Most reported behaviours regarding starting PC were related to communicating with the seriously ill person, other family members and professional carers; seeking information and helping the seriously ill person process information from professional carers; and, organising and coordinating care. Determinants facilitating and hindering these behaviours included awareness (e.g., of poor health), knowledge (e.g., concerning PC), attitudes (e.g., negative connotations of PC) and social influences (e.g., important others' opinions about PC). This study identified relevant family carers' behaviours and related determinants that can contribute to starting PC. As these determinants are changeable, the PC behavioural model that resulted from this study can serve as a basis for the development of behavioural interventions aiming at supporting family carers in performing behaviours that might contribute to starting PC. Abstract: view source »

Italy

How palliative care professionals deal with predicting life expectancy at the end of life: Predictors and accuracy

SUPPORTIVE CARE IN CANCER | Online – 31 August 2020 – In this study, physicians' and nurses' accuracy of survival of the patients was 46% and 40%, respectively. Survival was underestimated in 20% and 12% and overestimated in 34% and 48% of subjects. Both physicians and nurses considered metastases, comorbidities, dyspnea, disability, tumor site, neurological symptoms, and confusion very important in predicting patients' survival with nurses assigning more importance to intestinal symptoms and pain too. All these factors, with the addition of cough and/or bronchial secretions, were associated with physicians' greater accuracy. In the multivariable models, intestinal symptoms and confusion continued to be associated with greater predictive accuracy. No factors appreciably raised nurses' accuracy. Some clinical symptoms rated as relevant by the hospice staff could be important for predicting survival Abstract (w. list of references): view source »

U.S.

Will you hear me? Have you heard me? Do you see me? Adding cultural humility to resource allocation and priority setting discussions in the care of African American patients with COVID-19

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 1 September 2020 – The COVID-19 pandemic has refocused our attention on healthcare disparities affecting patients of color, with a growing body of literature focused on the etiology of these disparities and strategies to eliminate their effects. In considering the unique impact COVID-19 is having on African American communities, added measure must be given to ensure for sensitivity, empathy, and supportive guidance in medical decision-making amongst African American patients faced with critical illness secondary to COVID-19. The authors explore the applications of cultural humility over cultural competency in optimizing the care provided to African American patients faced with critical healthcare decisions during this pandemic. In turn, they charge one another as healthcare providers to consider how ethical principles and guidance can be applied to honor African American patients' unique stories and experiences. Full text: view source »

This enables the parent-clinician connection to then create a path forward in caring for the child and the family that is centered on underlying knowledge, values, and support through the trajectory of the illness. As outlined, determining goals of care and decision-making is not a one-off conversation. The use of the guide and components of the guide assist with revisiting understanding, hopes and fears within the context of the clinical picture shared through sensitive prognostications. Notably, parents who had the opportunity to engage in advance planning for their child reported that they felt more likely to be prepared for the child's last day and better able to plan for their child's location of death and rated their child's quality of life during end-of-life care as good to excellent. Full text: view source »

U.S.

Pediatric palliative care when COVID-19 positive adults are dying in a children's hospital

PEDIATRICS | Online – 27 August 2020 – The presence of a pandemic does not mean that a children's hospital needs to halt or cut back services. In <3 weeks, the Children's Hospital at Montefiore, a 130-bed facility attached to an adult hospital, admitted >150 COVID-19 positive adults to our hospital. All received the services of the deployed pediatric palliative care (PC) team. Before 30 March, there was only 1 PC pediatrician providing service to an entire children's hospital. In the model the authors describe, one specialist was able to provide training and oversight to an entire deployed team and quickly expand services. The team completed >150 new consultations, 700 supportive calls were made, and 38 families received bereavement counseling over 6 weeks. During calls, families often expressed gratitude for our services. The team worked to combat the isolation caused by visitor restrictions, the fear created by an incompletely understood illness, and the heightened demands placed on the standard system of care. This approach may be useful for other children's hospitals that may have similar situations in the near or distant future. PC remains essential to alleviate the suffering of our patients, their families, and frontline providers during this time of great uncertainty and loss. Full text: view source »

Diagnosis to death: Family experiences of paediatric heart disease

CARDIOLOGY IN THE YOUNG | Online – 24 August 2020 – Coronary heart disease (CHD) remains one of the leading causes of mortality of children in the U.S. There is limited research about the experience of parents from the diagnosis of their child with CHD through the death of their child. A prior study has shown that adults with heart failure go through a series of four transitions: 1) Learning the diagnosis; 2) Reframing the new normal; 3) Taking control of the illness; and, 4) Understanding death is inevitable. In this qualitative study, the author's performed semi-structured interviews with parents who have a child die of CHD to determine whether the four transitions in adults apply to parents of children with CHD. They found that these four transitions were present in the parents interviewed and that there were two novel transitions, one that proceeded the first Jones et al transition ("prenatal diagnosis") and one that occurred after the final Jones et al transition ("adjustment after death").¹ It is the authors' hope that identification of these six transitions will help better support families of children with CHD. Abstract (w. list of references): view source »

1. 'The future as a series of transitions: Qualitative study of heart failure patients and their informal caregivers,' Journal of General Internal Medicine, 2015;30(2):176-182. Full text: view source »

Patients in their final months of life need around-the-clock care. Sadly, only one in five Ontarians receive end-of-life (EoL) care through the province's publicly funded home care program in their last year of life. The COVID-19 pandemic has further limited access through staffing shortages, cancellation of visits and a lack of personal protective equipment. How can we, as a society, improve access to this essential care both now and in a post-pandemic period? Stated bluntly, what is the cost to support a good death? Through the provincial home care program, Ontarians have access to care provided by registered nurses, personal support workers and other healthcare professionals trained in palliative and EoL care. Patients can receive up to 24-hour nursing support at home in their final weeks of life. This results in better patient outcomes. Patients who receive EoL home care spend fewer days in hospital in their last three months of life and are three times more likely to die at home. A study of 50,000 deceased older adults in Ontario found the cost to enable people to die at home by providing EoL care is an additional $995 per person over the last three months of life, less than the average cost for one day in a hospital.¹ So, why aren't all Ontarians at the EoL receiving home care? Why is the bulk of EoL care in Ontario still provided in hospitals? view source »

1. 'Cost-effectiveness of investment in end-of-life home care to enable death in community settings,' Medical Care, 2020;58(8):665-673. Abstract: View Source »

New Zealand

Palliative care delivery in residential aged care: Bereaved family member experiences of the Supportive Hospice Aged Residential Exchange (SHARE) intervention

BMC PALLIATIVE CARE | Online – 17 August 2020 – SHARE is a new model of palliative care (PC) education that has been designed for residential aged care. The goal of SHARE is to help clinical staff improve PC within residential aged care facilities and to improve specialist PC nurses' knowledge and skill to care for frail older people. The experiences of 18 bereaved families concerning the PC journey (both at the start and finish of a one-year implementation of SHARE) were explored using semi-structured interviews. Three themes were important to bereaved families' experience: communication with staff, systems of care, and hospice involvement. Sub-themes indicating changes in these three components of care between the start and finish of SHARE was identified. A fourth theme highlighted challenges (relationship with GP, staff shortages, and turnover) that continued across SHARE. Findings indicated that SHARE benefited families (improved communication and support) through the end of life journey of their relatives, but challenges remained. Full text: view source »

Sweden

Toward a consensus on the nature of empathy: A review of reviews

Patient Education & Counseling | Online – 19 August 2020 – This study addresses the existing gap and confusion regarding the concept of empathy in the literature. While most articles and books on empathy start out by stating that there is far from a consensus on how empathy should be defined, this article reveals a movement toward four themes in empathy upon which most authors tend to agree. Although definitions of empathy do vary, it seems that they share the view that it involves understanding, feeling, sharing, and maintaining self-other differentiation. Based on these four themes, empathy can be defined as follows: "Empathy is to understand, feel, and share what someone else feels, with self-other differentiation." The clarification of the content of empathy that the authors' analysis has generated may assist practitioners and researchers in avoiding confusion regarding the meaning of the concept, as well as in avoiding misunderstandings when discussing empathy. The results of this study may guide practitioners and researchers in developing and measuring the relevant aspects of the concept. The findings may also inspire practitioners and researchers to reflect on the relationship between closeness and distance, feeling and cognition, and body and mind in empathy. Full text: view source »

Their findings suggest that a strategy in which ACP is provided following good practice in England has a probability of 55% (70%) of being cost‐effective when compared with standard care at a cost per quality adjusted life years threshold of £20,000 (£30,000). The authors' findings are highly sensitive to the duration of ACP (which was substantially longer in their study because experts estimated the costs of ACP as an ongoing, personalised and multidisciplinary process), and to the effectiveness of ACP in terms of carer's quality‐of‐life. Model structure and parameters were done in comprehensive consultation with recognised experts in the field. This ensured that the model was relevant to current practice. In addition, by carefully evaluating the resource inputs and costs of ACP, this study addressed an important gap in the evidence. Full text: view source »

COVID-19 and hospital palliative care: A service evaluation exploring the symptoms and outcomes of 186 patients and the impact of the pandemic on specialist hospital palliative care

PALLIATIVE MEDICINE | Online – 14 August 2020 – The findings of this study contribute to the emerging evidence base on patient demographics, clinical profiles and palliative care (PC) requirements in end stage COVID-19. The study demonstrates a short dying phase in deaths from COVID-19, with a median of 6 days from diagnosis to death and a median of just 2 days from referral to PC to death. The replacement of "typical" PC patients raises the question as to the location of these patients and the implications, for patients and services, if they present at a later stage of their illness instead. It may also suggest a need for directing more services into community management of patients in a pandemic situation. This would be an interesting area for further evaluation and research. Pandemics characteristically have peaks of infection across disparate nations at different times and can also have multiple peaks of infection and death across time. In a globalised and connected healthcare community, the authors' findings provide important information to other clinicians managing patients with end-stage COVID-19 disease, both during the current and likely future waves of the disease. Full text: view source »

In the Lay Press

Grief from Covid-19 death: Toll on bereaved family members runs deep, study says

U.S. | CNN HEALTH – 10 August 2020 – Every day, the nation is reminded of COVID-19's ongoing impact as new death counts are published. What is not well documented is the toll on family members. New research suggests the damage is enormous. For every person who dies of COVID-19, nine close family members are affected, researchers estimate based on complex demographic calculations and data about the Coronavirus. Many survivors will be shaken by the circumstances under which loved ones pass away – rapid declines, sudden deaths and an inability to be there at the end – and worrisome ripple effects may linger for years, researchers warn. If 190,000 Americans die from COVID-19 complications by the end of August, as some models suggest, 1.7 million Americans will be grieving close family members, according to the study. Most likely to perish are grandparents, followed by parents, siblings, spouses and children. Because of family structures, Black families will lose slightly more close family members than white families, aggravating the pandemic's disproportionate impact on African Americans. view source »

Other studies perceive communication problems with care providers as barriers to family involvement in decisions and EoLC. By explicating just how physicians respond to communication problems with families, this study revealed communication problems as opportunities to enable family involvement and conversations about advance care planning. What we do not know is how residents and families use communication problems with providers to accomplish their goals, how care providers respond or the effects on EoLC costs and outcomes. Policymakers and administrators should consider re-design of the physical and social environment within LTC facilities to better support the care needs of residents. Clinical researchers should develop and evaluate pain and symptom assessment tools for use in LTC for people with frailty, including among those with cognitive impairment. Health administrators and clinical leaders should also support LTC staff and physician involvement in PC education, mentorship and skills training programmes. Full text: view source »

Palliative care needs-assessment and measurement tools used in patients with heart failure: A systematic mixed-studies review with narrative synthesis

HEART FAILURE REVIEWS | Online – 3 August 2020 – Six palliative care (PC) needs-assessment/measurement tools used in patients with heart failure (HF) were identified and compared according to their content and context of use, development, psychometrics and practicality, and applications in identifying PC patients and needs. The tools are not necessarily mutually exclusive as they may serve different purposes including patient identification, needs identification, needs-measurement, and needs-assessment (decision aids). Comparison results suggested that the Needs Assessment Tool: Progressive Disease – Heart Failure (NAT:PD-HF) is the most appropriate PC needs-assessment tool for use in HF populations. It covers most of the patient needs and has the best psychometric properties and evidence of identification ability and appropriateness. However, this conclusion is based on limited evidence. Four retrieved tools lack studies on their psychometric and practicality properties in HF populations, and one of these…even lacks a research development paper. Nevertheless, NAT:PD-HF is preliminarily recommended for use in patients with HF, but it requires further testing and validation. The Integrated Palliative Care Outcome Scale has some similar advantages to NAT:PD-HF, but less evidence is available on its use in HF populations. Full text: view source »

MVP (Medical situation, Values & Plan): A memorable and useful model for all serious illness conversations

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 29 July 2020 – Serious illness conversations (SIC) are integral to the optimal care of the vast and growing population of seriously ill patients, but they are under-taught in health professions training and widely feared, delayed or altogether avoided by clinicians. To redress this predicament, medical communication experts have published a variety of communication models designed to aid and promote SIC facilitation. The authors of this article, as three clinician-educators, are among their many beneficiaries. Yet despite their value, their experience in communication education and clinical encounters has revealed three recurring impediments to their instruction, retention and usefulness. Although to the authors' knowledge they have not been empirically evaluated, these pedagogic and practical weaknesses are potentially explained by both learning theory and mnemonics scholarship: 1) Different models for different types of SICs demand multiple rounds of information recoding and consolidation into long-term memory, which may overwhelm learners' cognitive load capacity; 2) Ostensibly sequential mnemonics (e.g., acronyms) that incorporate non-sequential components may burden working memory, compromise incorporation into long-term memory, and if recalled, muddle the very communication process they are designed to simplify; and, 3) Content that is selected to conform to a memorable mnemonic, rather than vice versa, often strains the language, increases the number and complexity of elements to be encoded and decoded, and hence may challenge retention and recall. The authors introduce MVP, a unified model for all SICs. It is designed to be readily teachable by medical educators, and memorable and useful for clinicians. Full text: view source »

While some experts advocate that advance care planning (ACP) may be a solution to the problem, the author argues that the prevailing understanding and current practice of ACP perpetuates the problem and results in patients not receiving optimal patient-centered care. Much of the problem centers on the framing of ACP around end-of-life care, the lack of use of decision support tools, and inadequate language that does not support shared decision-making. A new approach and new terminology is needed. Advance Serious Illness Preparations & Planning consists of discrete steps using evidence-based tools to prepare people for future clinical decision-making in the context of shared decision-making and informed consent. Full text: view source »

We will all be changed: Palliative care transformation in the time of COVID-19

JOURNAL OF PALLIATIVE MEDICINE | Online – 27 July 2020 – Transformation began in early 2020. In December of 2019, a novel respiratory illness was described in China, and the era of the global pandemic caused by severe acute respiratory syndrome Coronavirus 2 began. Coronavirus disease 2019 (COVID-19) has expanded globally to infect millions of people and to cause over half a million deaths – and these numbers are underestimates due to lack of widespread testing. By the time this article is published, this epidemiology will be far out of date, since the number of cases and deaths per day continues to rise globally and in the U.S. People who are presymptomatic and minimally symptomatic will shed and share this virus that is so adapted to our human desire to touch, to interact, and to live in proximity to one another. Although most people who are infected will recover, a significant percentage will die or live on with major chronic effects on lung, renal, or neurologic function. Every facet of ordinary life is affected, from celebrations to funerals, from grocery shopping to employment, from household cleaning to visiting older relatives. And frankly, although research is progressing on treatment and vaccines, we all know this new normal will be sustained for an indefinite amount of time. Full text: view source »

Social justice and palliative care policy

SOCIAL WORK HOSPICE & PALLIATIVE CARE NETWORK | Online – Accessed 27 July 2020 – In an effort to engage in social action to address racial inequity, the network's 'Statement on Racism and Structural Inequities in Hospice and Palliative Social Work' is suggesting the bold and necessary step of asking us to critically question how we, as hospice and palliative care (PC) social workers, are contributing to maintaining systems of inequity in the work that we do. These are hard conversations to have, but needed to do the work necessary to correct racial and ethnic disparities inherent in end-of-life care (EoLC). To be anti-racist PC and hospice social workers, we need to examine our own personal biases and the systems of care that pay our salaries and contribute to poorer care provision for people who are not white. Using a lens of intersectionality to examine the market based economy of healthcare in the U.S., having a life-threatening illness and being black or Hispanic unfortunately, leads to poorer EoLC outcomes. As our healthcare system struggles to care for those impacted by COVID-19, we have seen that higher rates of infection and death have occurred in nonwhite communities. PC research also tells us that racial and ethnic minorities experience a higher likelihood of difficulties in managing symptoms from all illnesses, including higher rates of experiences with pain, a higher likelihood of hospitalization in final stages of life, and a higher likelihood of discharge from hospice. Download/view statement at: view source »

In response to the developing pandemic, the authors' Geriatrics & Palliative (GAP) Medicine team formulated a 2-team approach which includes triage algorithms for palliative consults as well as acute symptomatic management for both patients diagnosed with or under investigation for COVID-19. These algorithms provided a delineated set of guidelines to triage patients in need of palliative services and included provisions for acute symptoms management and the protection of both the patient care team and the families of patients with COVID-19. These guidelines helped with streamlining care in times of crisis, providing care to those in need, supporting frontline staff with primary-level palliative care, and minimizing the GAP team's risk of infection and burnout during the rapidly changing pandemic response. Full text: view source »

Teach me about death

BRITISH MEDICAL JOURNAL | Online – 22 July 2020 – Medicine has come on leaps and bounds and, as a result, in the U.K. we have become what has been called a "death free generation." Many people are largely unaffected by deaths from war, childbirth, or infection and can live for decades without experiencing the death of a loved one. It has almost become an expectation that we will all live well into old age. However, death is inevitable and plays some part in every clinical specialty. Public health figures indicate that 46.9% of people in England will die in hospital, making death an important part of hospital life that both medical students and doctors will be exposed to and required to address. Junior doctors, who commonly staff inpatient wards, are likely to be involved in prognosis counselling and end-of-life (EoL) conversations with patients, carers, and loved ones from the very beginning of their careers. However, medical schools aren't preparing us for the reality of having these conversations. A U.K. survey of medical schools found that on average only 20 hours of the curriculum were dedicated to palliative care, with a large proportion of these occurring in the later years of training. A study by the Royal College of Physicians of Edinburgh admitted that it was "unrealistic" to expect any graduating medical student to be fully prepared for palliative medicine. Yet this failure to equip junior doctors with adequate knowledge of EoL care risks patients and their loved ones being left without the support they require. Full text: view source »

The open-ended questions or qualitative findings elaborated on these responses by describing how PC conferences improved communication with healthcare providers and allowed them to feel "all on the same page." Given these findings, it is quite likely that by attending a PC conference, families were able to address their questions and concerns and become informed so that they could feel more comfortable making decisions about EoL issues which contributed to the reductions in emergency department use and hospital death, allowing residents to remain in LTC until their death. Full text: view source »

Children's views are not taken into account in accordance with Article 12 of the United Nations Convention on the Rights of the Child in the Family Talk Intervention when a parent is cared for in palliative care

OMEGA – JOURNAL OF DEATH & DYING | Online – 12 July 2020 – Having a parent with a life-threatening illness is challenging throughout the illness trajectory, and for some also in bereavement. Article 12 of the United Nations Convention on the Rights of the Child states a child's right to express their opinion and have it respected in processes that affect them. The aims of this article were to explore the child's active participation in a family support programme, the Family Talk Intervention, in accordance with Article 12, when having a parent cared for in palliative care (PC). Twenty families with 50 children participated. Field notes were taken during the programme and later analysed with interpretive descriptions. The study shows that all children were listened to, but only a quarter reached the minimum point required in Article 12, where their views were taken into account. The Family Talk Intervention in PC would benefit from implementing a child-centred approach in order for all children to be active participants. Abstract (w. list of references): view source »

What would people think? Perceived social norms, willingness to serve as a surrogate, and end-of-life treatment decisions

PALLIATIVE & SUPPORTIVE CARE | Online – 15 July 2020 – The authors investigated how intrapersonal and social-contextual factors predicted two components of the surrogate decision-making process: individuals' willingness to serve as a surrogate and their tendency to select various end-of-life (EoL) treatments, including mechanical ventilation and palliative care options. Viewing service as a surrogate as a more typical practice in healthcare was associated with greater willingness to serve. Greater decision-making confidence, greater willingness to collaborate with patients' physicians, and viewing intensive, life-sustaining EoL treatments (e.g., mechanical ventilation) as more widely accepted were associated with choosing more intensive EoL treatments. This study's consideration of both intrapersonal and social-contextual factors advances knowledge of the two key aspects of surrogate decision-making… Providers can use information about the role of these factors to engage with surrogates in a manner that better facilitates their decision-making. For instance, providers can be sensitive to potential cultural differences in surrogate decision-making tendencies or employing decision aids that bolster surrogates' confidence in their decisions. Abstract (w. list of references): view source »

Critical discourse analysis of 54 documents found that rather than just being an outcome or event, descriptions of what makes a death good also include many processes. A more extended definition includes: the person receives holistic EoLC; the dying person is treated with dignity and respect; the death is not sudden and unexpected; people are prepared and have ideally done some advance care planning; people are aware that someone is dying and openly discuss this; on knowing the dying person's preferences, all involved are to work towards achieving these; the place of death is important; the person's family are involved and the needs of the bereaved are considered. This analysis indicates the complex nature of the current discourses around good death in EoLC policy, which often focuses on care rather than death. Policy should focus on outlining what quality EoLC looks like, rather than assume "good death" is a suitable outcome statement. Abstract: view source »

Experience of caregivers supporting a patient through voluntarily stopping eating and drinking

JOURNAL OF PALLIATIVE MEDICINE | Online – 9 July 2020 – Voluntarily stopping eating and drinking (VSED) is an ongoing voluntary choice to forego food and hydration in an effort to hasten death. Ongoing caregiving is necessary as patients become weak and lose focus as a result of dehydration, but little is known about the process of supporting a patient through VSED. Interviews with 24 U.S. caregivers for 20 individuals who had attempted VSED produced four themes: 1) Caregivers believe that VSED is the best death available to the patient; 2) Caregivers act as advocates and worry that the patient's goals will be challenged by healthcare professionals, the community, or legal authorities (obtaining support from a hospice is an important way to legitimize VSED); 3) Through the VSED process itself, caregivers carry the responsibility for the patient's success as the patient becomes weaker and loses focus; and, 4) Because there is no social script to guide the VSED process, caregivers choose what roles to play during VSED, such as focusing on physical care or being emotionally present as the patient's spouse or child. Caregivers face unique challenges in helping patients undertake VSED. Many are uncertain about whether they will receive support from clinicians or the community. Support from health professionals may improve caregiver confidence and reduce worry. Abstract: view source »

The Compassionate Communities Connectors model for end-of-life care: A community and health service partnership in Western Australia

PALLIATIVE CARE & SOCIAL PRACTICE | Online – 2 July 2020 – With the number of Australians dying annually expected to double in the next 25 years, the end-of life (EoL) sector and Australian communities are looking for alternative, sustainable options for supporting positive EoL experiences for dying people, their carers and society more broadly. Many Australians currently die in a way and a place that does not reflect their values or their choice, and their EoL journey is interrupted with preventable or unnecessary admissions to hospital. Compassionate Communities is an international strategy for implementing the public health palliative care (PC) approach to EoL care. It recognises that sickness and health, death and loss are a natural part of life, and that care is not only a task for health and social services but is a community responsibility. While professional services are part of the mix, they need to recognise that their role is to work in partnership with civic and personal networks to support social connections and co-design EoL support. Hence, there is an international drive towards increasing provision of community-led models of social, psychological and practical support for people living with advanced illness and their families. These models differ in terms of duration of support, contact time, focus and range of activities, raising questions about their comparative effectiveness. There is limited but growing base of evidence concerning existing public health models in PC. Full text: view source »

In the experience of many African American patients struggling against terminal illness, healthcare providers have denied them a say in their own medical decision‐making. In the midst of the COVID‐19 pandemic, African Americans have once again been denied a say with regard to the rationing of scarce medical resources such as ventilators, in that dominant and ostensibly race‐neutral algorithms sacrifice black lives. Is there such thing as a "good" or "dignified" death when African Americans are dying not merely of COVID‐19 but of structural racism? Full text: view source »

Creating a resilient research program: Lessons learned from a palliative care research lab

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 1 July 2020 – While limitations in funding and training opportunities are well-described, a less recognized barrier to successful palliative care (PC) research is creating a sustainable and resilient team. In this special report, the authors describe the experience and lessons-learned in a single PC research lab. In the first few years of the program, 75% of staff quit, citing burnout and the emotional tolls of their work. To address sustainability, the authors translated resilience theory to practice. First, they identified and operationalized shared mission and values. Next, they conducted a resilience resource needs assessment for both individual team-members and the larger team as a whole, and created a workshop based curriculum to address unmet personal and professional support needs. Finally, the authors changed the leadership approach to foster psychological safety and shared mission. Since then, no team-member has left and the program has thrived. As the demand for rigorous PC research grows, the authors hope this report will provide perspective and ideas to other established and emerging PC research programs. Abstract (w. list of references): view source »

Public perceptions of advance care planning, palliative care, and hospice: A scoping review

JOURNAL OF PALLIATIVE MEDICINE | Online – 2 July 2020 – Although access to advance care planning (ACP), palliative care (PC) and hospice has increased, public attitudes may still be barriers to their optimal use. A limited number of studies met the authors' inclusion criteria... The studies reflect public perceptions pre-COVID-19. Twelve studies met inclusion criteria and included >9,800 participants. For ACP, 80% to 90% of participants reported awareness, and a similar proportion considered it important, but only 10% to 41% reported having named a proxy or completed a written document. 66% to 71% of participants reported no awareness of PC, and those who reported awareness often conflated it with end-of-life care. However, after being prompted with a tested definition, 95% rated PC favorably. For hospice, 86% of participants reported awareness and 70% to 91% rated it favorably, although 37% held significant misconceptions. Consumer perceptions of ACP, PC, and hospice each have a distinct profile of awareness, perceptions of importance, and reports of action taking, and these profiles represent three different challenges for public messaging. Abstract: view source »

This issue is prohibitive to the implementation and development of PC policies worldwide. It is imperative to identify what message PC professionals are relaying to patients and other healthcare specialists and how that message may condition understandings of the right to access PC. The findings of this study reinforce the complexity of professional messaging. It seems that there is a common culture, based on the same values, on what messages PC professionals transmit to patients and their families. The PC health professionals sacrifice being identified more readily by their profession for the sake of what they perceive as their patients' wellbeing. PC professionals forgo self-interest to care for the patient in order throughout the trajectory of their illness, to alleviate suffering and to support the patient's family. These messages are transmitted through availability, disposition and acceptance towards the ill person. However, not naming and not openly discussing the purpose of PC and its usefulness to patients and their families can perpetuate the myths, misunderstanding and lack of awareness of PC. The conclusions of this study are potentially transversal to other European countries. Full text: view source »

Dying individuals and suffering populations: Applying a population-level bioethics lens to palliative care in humanitarian contexts: Before, during and after the COVID-19 pandemic

JOURNAL OF MEDICAL ETHICS | Online – 19 June 2020 – Humanitarian crises and emergencies, events often marked by high mortality, have until recently excluded palliative care (PC)... In the COVID-19 pandemic, PC received unprecedented levels of societal attention. Unfortunately, this has not been enough to prevent patients dying alone, relatives not being able to say goodbye, and PC being used instead of intensive care due to resource limitations. Yet global guidance was available. In 2018, the World Health Organization (WHO) released a guide on 'Integrating palliative care and symptom relief into the response to humanitarian emergencies and crises' – the first guidance on the topic by an international body. The authors of this article argue that while a landmark document, the WHO guide took a narrowly clinical bioethics perspective and missed crucial moral dilemmas. They argue for adding a population-level bioethics lens, which draws forth complex moral dilemmas arising from the fact that groups having differential innate and acquired resources in the context of social and historical determinants of health. The authors discuss dilemmas concerning: limitations of material and human resources; patient prioritisation; euthanasia; and legacy inequalities, discrimination and power imbalances. Implications In parts of the world where opportunity for preparation still exists, and as countries emerge from COVID-19, planners must consider care for the dying. Immediate steps to support better resolutions to ethical dilemmas of the provision of PC in humanitarian and emergency contexts will require honest debate, concerted research effort, and international, national and local ethical guidance. Full text: view source »

Through local campaigns, patients should be encouraged to ask HCPs to have these discussions and feel empowered to take control of the remainder of their lives. In summary, the simple interventions used in this project increased ACP within the secondary care setting, embedded it within geriatric ward practice and ensured more patients were provided with the opportunity to have their preferences at the end of life achieved. Full text: view source »

A scoping research literature review to identify contemporary evidence on the incidence, causes, and impacts of end-of-life intra-family conflict

HEALTH COMMUNICATION | Online – 10 June 2020 – When someone is terminally ill, it is often a very stressful time for the dying person and their family. It would not be unusual for intra-family conflict, involving one or more family members and even the dying person, to occur. However, this type of conflict has not been identified as an end-of-life (EoL) issue needing to be noticed and addressed or prevented when possible. This lack of attention could be because it is not known how common or how impactful this type of conflict is. A scoping research literature review was conducted for available 2004-2019 evidence on the incidence or prevalence of intra-family conflict, factors contributing to it or causing it, and the outcomes or impact of it. A search for published peer-review articles identified 18 research reports for a scoping review. The 18 studies, all conducted in developed countries, revealed intra-family conflict is often present; and with a range of harmful effects for the dying person, the family as a whole or individual family members, and other persons and organizations. The identified factors contributing to or predisposing intra-family conflict were grouped into three categories: 1) Family disagreements over curative treatment and/or EoL care and decisions; 2) Previous family conflict and other family dynamic matters; and, 3) The dying process itself. The evidence identified through this scoping review, although relatively minimal, should be useful for planning future research and for raising awareness of EoL intra-family conflict to improve social services and palliative programs or services. Abstract: view source »

A randomised phase II trial testing the acceptability and feasibility of a narrative approach to public health communication to increase community engagement with palliative care

PALLIATIVE MEDICINE | Online – 19 June 2020 – Communities have limited understanding of palliative care (PC), creating barriers to informed choice around consideration of a full range of care options in the event of serious illness. Few empirically tested interventions are available to educate community about PC, and ultimately improve timely access to these services. In this study, a narrative approach to public health communication was found to be acceptable to community members, and feasible to deliver online. Exploratory data suggested it immediately improved attitudes towards possible access to PC in the event of serious illness, with the narrative detailing a description of the evidence delivered by a healthcare professional appearing to be the most promising strategy. This study provides preliminary data to inform a future, longitudinal trial evaluating effectiveness and ultimately other evidence-based, public health approaches to improve community engagement with PC. Further studies are required to confirm the generalisability of findings to a broader representative sample and other settings including internationally. Abstract (w. list of references): view source »

In this review, the authors describe some of the important palliative care (PC) considerations that need to be incorporated into COVID-19 pandemic planning. The main aspects to be considered include decision algorithms for rationing care, training on effective symptoms management, alternative delivery methods of PC services such as telemedicine and finally death and bereavement support for surviving family members who are likely to be isolated from their loved one at the moment of death. Full text: view source »

Human touch via touchscreen: Rural nurses' experiential perspectives on telehealth use in pediatric hospice care

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 7 June 2020 – Telehealth, through its utilization of technology to connect medical professionals with patients and family caregivers, has been recognized as one potential solution to address critical access issues in hospice care. As the COVID-19 pandemic has necessitated the rapid incorporation of screen modalities into palliative care (PC), that suddenness warrants pause to consider the baseline barriers or discomforts with telehealth, particularly as they relate to the provision of palliative or hospice care. Prior studies have revealed reasons for PC providers' tangible concerns about telehealth: lack of training and lack of incentives, lack of equipment availability or lack of perceived ease of equipment use, concern about technology functionability and uncertainty about patient eligibility criteria for telehealth. User-friendly, reliable, accessible, secure technologies, and clear connectivity are well-established requirements for successful telehealth, as is provider training. The deeper concern with telemedicine use in palliative and hospice care is the concern with whether this communication modality is a facilitator or a barrier for the relationality so core to the profession. A fear about virtual interaction is whether the communication format depersonalizes the team or family experience, particularly when discussing the sensitive topics relevant to pediatric end-of-life care. Palliative and hospice teams have shared concerns about the way telehealth impacts professional roles: telehealth's impact to professional autonomy, fear of decay in the quality of care provided, and concern for risk of not being present to assist the patient such as in adverse medication reactions. Full text: view source »

The authors discuss the status of PC delivery for African American patients within the structure and framework of the clinical practice guideline domains established by the National Consensus Project for Palliative Care. This perspectives paper describes the different aspects of PC and the interplay with African American culture. The authors also attempt to identify the multi-level barriers (healthcare system and provider level) to PC among African Americans as a required step toward decreasing the disparities in access, coverage, utilization, and benefit of PC. Furthermore, this paper may serve as an educational guide for healthcare workers who care for African American patients with cancer. Abstract (w. list of references): view source »

Outcomes associated with a nurse-driven palliative care screening tool in the intensive care unit

CRITICAL CARE NURSE, 2020;40(3):23-29. Access to specialty palliative care (PC) delivery in the intensive care unit is inconsistent across institutions. The intensive care unit (ICU) at the study institution uses a screening tool to identify patients likely to benefit from specialty PC, yet little is known about outcomes associated with the use of screening tools. Records of 112 patients with positive results on PC screening were retrospectively reviewed to compare outcomes between patients who received a specialty PC consult and those who did not. Primary outcome measures were length of stay, discharge disposition, and escalation of care. Sixty-five patients (58%) did not receive a PC consult. No significant differences were found in length of hospital or ICU stay. Most patients who experienced mechanical ventilation did not receive a PC consultation. Patients who were discharged to home were also less likely to receive a consult, whereas patients who were discharged to hospice were more likely to receive a consult. Unmet needs exist for specialty PC. Understanding the methods of identifying patients for specialty PC and providing them with such care is critically important. Future research is needed to elucidate the factors providers use in their decisions to order or defer specialty PC consultation. Abstract: view source »

COVID-19

Coronavirus changes how doctors deal with death

U.K. | BBC News – 1 June 2020 – During the COVID-19 pandemic, doctors have had to deal with death more often than many are used to, and due to restrictions in place over hospital visitors, they are often the last person to spend time with a terminally ill patient. Filmmaker Paul Myles spoke to five doctors administering end-of-life care during the crisis. view source »

Worth Repeating

Palliating a pandemic: "All patients must be cared for"

JOURNAL OF PAIN & SYMPTOM MANAGEMENT, 2010;39(2):291-295. In the event of an overwhelming influenza pandemic, many healthcare systems will implement a triage system that would potentially deny critical care treatment to some seriously ill patients. Although all triage systems have guaranteed palliative care (PC) for those who are denied critical care, no jurisdiction has yet developed a plan to accommodate the anticipated "surge" in demand for PC. The authors present a mathematical and ethical justification for a PC surge plan and outline some of the key elements that should be included in such a plan. PC may have a large role to play in an influenza pandemic, but our scarce resources could easily be overwhelmed, with potentially dire consequences. Although we hope that the present H1N1 influenza pandemic will be less severe than some experts predict, we must plan for the worst. By developing a plan that addresses our "stuff," staff, space, and systems needs, we can go a long way toward fulfilling our responsibility toward those who are not expected to survive. Full text: view source »

Advance care planning (ACP) increased through the first three years of the service (from 45% to 83%) and on average 74% of patients achieved preferred place of death. More than 70% of patients avoided an emergency or unplanned hospital admission in their last month of life. The mechanisms and context identified as driving forces of the service included: 7/7 single point of contact; coordinating services across providers; recruiting and developing the workforce; understanding and clarifying new roles; and, managing expectations. This paper provides an evaluation of a novel approach to EoLC and creates a set of hypotheses that could be further tested in similar services in the future. Abstract: view source »

Palliative care utilization among patients with COVID-19 in an underserved population: A single-center retrospective study

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 23 May 2020 – There was a low utilization rate of palliative care (PC) in patients with COVID-19. This can be due to the hostile atmosphere created by the pandemic, infection control measures, and extreme pressure on services. Evidence has shown that growing healthcare demands in the setting of COVID-19 has overwhelmed and overburdened the capacity of U.S. hospitals. In that context, most hospital resources were allocated toward direct patient care with some services prioritized over others. However, provision of relief from suffering, support in complex decision making, and management of clinical uncertainty, as the foundational features of PC, should be essential responses to the pandemic crisis. Addressing patients' and families' sufferings, and supporting their decision making in clinical uncertainty are as important as medical management since there is still no definitive treatment for COVID-19. The standard humanitarian response in this pandemic crisis should be re-imagined encompassing both saving lives and minimizing suffering. Palliative trained specialists deliver holistic care by ensuring symptom management and psychological support to both patients and their families. Even though critical care physicians and hospitalists can render some degree of palliative services, they are already overburdened with their increased workloads, hence making PC services indeed invaluable. Full text: view source »

Global development of children's palliative care: The picture in 2017

WELLCOME OPEN RESEARCH | Inprint – 20 May 2020 – The authors were able to identify a total of just 21 countries in the highest categories of development for children's palliative care (PC); these countries contain 232 million children and young people age 19 and under (9.2% of the global total). In addition, 778 million children (30.7%) live in 55 countries with only isolated and patchy provision. Meanwhile, 610 million children (24.1%) live in 77 countries that only have capacity building activity in place. A further 265 million children (10.4%) live in 106 countries where no known children's PC activity is taking place, or it has proved impossible to gather any evidence on it. An even greater number, 646 million children (25.5%), live in 29 countries where the available evidence on the level of children's PC development is contradictory. Accordingly, less than 10% of those under 20 years old live in countries where PC for children is of the highest current standards. Almost a third of children live in countries where such care is highly limited in provision, and incommensurate with need. One quarter of all children live in countries that are only beginning to mobilise efforts for children's PC. The rest live in countries where it is proving difficult even to assess available levels of children's PC. The authors have previously shown that the overall development of PC, despite some gains over time, is incapable of meeting existing need. For the world's children who could benefit from PC, the situation is even more serious and requires a global intervention of massive scale for its rectification. Full text: view source »

Costs can be broadly categorised into three main areas: 1) Work related costs (costs related to changes in employment); 2) Carer time costs (cost related to time investment required by carers); and, 3) Out-of-pocket costs (direct outlays of money). A 2015 qualitative study of bereaved carers confirmed that the costs of caring at the EoL are significant and include a range of both direct (e.g., transport, food, medication) and indirect costs (e.g., related to employment, carer time, carer health). The palliative care context was also found to increase costs, as meeting the ill person's needs was prioritised over cost. Over recent years a growing number of international studies have confirmed that the financial costs of caring are a serious issue across the developed world. Furthermore, evidence suggests that informal carers make a huge financial contribution to the wider healthcare system, with studies estimating that informal caregiving accounts for up to 70% of total health care costs. Full text: view source »

The healthcare cost of palliative care for cancer patients: A systematic review

SUPPORTIVE CARE IN CANCER | Online – 21 May 2020 – Several delivery models of palliative care (PC) are currently available: hospital-based, outpatient-based, home-based, nursing home-based, and hospice-based. Weighing the differences in costs of these delivery models helps to advise on the future direction of expanding PC services. The objective of this review is to identify and summarize the best available evidence in the U.S. on cost associated with PC for patients diagnosed with cancer. The initial search identified 748 articles, of which 16 met the inclusion criteria. Eight studies (50%) were inpatient-based, four (25%) were combined outpatient/inpatient, two (12.5%) reported only on home-based palliative services, and two (12.5%) were in multiple settings. Most included studies showed that PC reduced the cost of healthcare by $1,285-$20,719 for inpatient PC, $1,000-$5,198 for outpatient and inpatient combined, $4,258 for home-based, and $117-$400 per day for home/hospice, combined outpatient/inpatient PC. Receiving PC after a cancer diagnosis was associated with lower costs for cancer patients, and remarkable differences exist in cost saving across different PC models. Abstract (w. list of references): view source »

Pediatric advance care planning

Congruence gaps between adolescents with cancer and their families regarding values, goals, and beliefs about end-of-life care

JAMA NETWORK OPEN | Online – 19 May 2020 – Families had a poor understanding of their adolescent's values regarding their own end-of-life (EoL) care with respect to when to initiate EoL conversations and preference for being off machines that extend life, if dying. Pediatric advance care planning could minimize these misunderstandings, potentially affecting the broader domain of clinical practice guidelines for quality palliative care. Access to pediatric advance care planning to increase congruence for interested and ready adolescent-family dyads may be more beneficial than simply asking adolescents about their EoL treatment preferences by helping families with the burdens of making EoL decisions, ensuring that adolescents' preferences are heard, and opening up conversations on topics that both the adolescent and family member may be thinking about, but avoiding. Ultimately, what is at stake here is excessive and unwanted treatment, leading to unnecessary and avoidable suffering. Full text: view source »

Since this important issue can actually be considered part of a widespread conspiracy of silence (even inside healthcare contexts), the main element on which it would be fundamental to take action is the professional curricula useful in understanding and approaching death and dying in health profession degrees. It appears fundamental to adopt a completely new attitude toward death and dying, especially while dealing with terminally ill patients. Extract: view source »

Improvements needed in palliative care services

CA: A CANCER JOURNAL FOR CLINICIANS | Online – 8 May 2020 – A new study in Cancer that compared data from a 2009 national study with a similar study conducted in 2018 investigated trends in palliative care (PC) facilities at cancer centers in the U.S. PC program leaders reported some significant improvements in the structures and processes for their outpatient clinics. However, according to senior author Dr. Eduardo Bruera, chair of the palliative, rehabilitation, and integrative medicine department at The University of Texas MD Anderson Cancer Center in Houston, says the study also reported some alarming results. For example, although there has been significant growth in the number of outpatient PC programs, "The vast majority of community cancer centers and a considerable proportion of the National Cancer Institute (NCI) elite cancer centers in the nation do not have inpatient PC units," he says. In addition, Dr. Bruera notes that the growth of inpatient PC beds has been much slower than the growth of outpatient programs. "This raises concerns about the quality of care when an inpatient dies in many cancer centers." Another disturbing observation was that the recommended early integration of supportive and PC is not taking place in the majority of cancer centers. Moreover, says Dr. Bruera, "We found that oncology fellows in most cancer centers do not have access to mandatory rotations in supportive and PC and are therefore unable to acquire the necessary training on how to manage physical and psychosocial suffering in their patients." Perhaps the most concerning finding, according to Dr. Bruera, was the lack of supportive and PC research by most cancer centers, including comprehensive NCI cancer centers, "since better medical care is associated with active research on how to assess and manage the different aspects of suffering associated with cancer." Full text: view source »

In the lay-press

The pandemic is changing how we die – and not just for COVID-19 patients

TIME MAGAZINE | Online – 13 May 2020 – Hospitals today face an impossible predicament regarding visitors for terminally ill patients. On one hand, a visitor might spread the virus within the hospital or become exposed and bring it home. On the other, depriving people of the chance to make life-and-death decisions and say goodbye in person is cruel and may even influence the choices they make. Many hospitals seek to walk this line by allowing visitors for dying patients, with stringent restrictions. For example, the New York State department of health recommends hospitals permit one visitor for patients expected to die within 24 hours. Some hospitals allow only a single hour-long visit. And even generous policies have unintended consequences: though medical teams don't intend to coerce families into transitioning patients to comfort-focused care before they feel ready, the fact that they cannot visit until their loved one is dying can seem like an incentive. For families that opt to discontinue ventilators, the calculus becomes more brutal. COVID-19 is especially contagious during the removal of a breathing tube, so many hospitals prohibit visitors during this procedure. If a hospital allows just one visit, families must choose between seeing their loved one before the tube is removed, while she is guaranteed to be alive, and waiting until after – with the uncertain hope of witnessing her final moments. Physicians are also notoriously inaccurate at predicting when patients will die. When visits are allowed only for an hour, it may be impossible to time a visit with the moment of death. view source »

Developing a consensus-based definition of PC required extensive deliberation, rigorous examination and thorough testing. It was challenging to find common ground among individuals with longstanding experience in the field of PC who had firmly held positions. Although the consensus-based definition is not perfect, it creates practice and policy value beyond its intended purpose of defining PC comprehensively and clearly. It provides an opportunity to examine international developments in the conceptualization and practice of PC and to achieve an explicit and shared understanding of that practice across the global community. The new definition is inclusive, encompasses health-system advances, and reflects the opinions and perceptions among a global community of professional health care providers. The new definition is aligned with the recommendations of The Lancet Commission, allowing for future synergy with efforts to implement the recommendations of its report and future implementation activities. Future research is needed to evaluate the uptake, benefits and challenges faced by those who use this new definition. This consensus-based definition must be open to critical discussion that includes patients and caregivers as well as providers. To this end, the IAHPC continues to collate all feedback in what will be a continuous process of adapting the definition of PC to the ever-changing realities of patient needs. Full text: view source »

The more who die, the less we care: Confronting the deadly arithmetic of compassion

MEDICAL DECISION MAKING | Online – 6 May 2020 – We are inconsistent and sometimes incoherent in our valuation of human life. We value individual lives greatly, but these lives lose their value when they become part of a larger crisis. As a result, we do too little to protect human lives in the face of catastrophic threats from violence, natural disasters, and other causes. In medicine, this may pose difficult choices when treating individual patients with expensive therapies that keep hope alive but are not cost effective for the population, for example with end-of-life care. Lifesaving judgments and decisions are highly context-dependent, subject to many forms of response mode and framing effects and affective biases. This has implications for risk communication and the concept of shared decision-making. Slower, more introspective decision-making, as in the cleft palate example, may reduce some of the affective biases associated with fast, intuitive decisions. But slow thinking can also induce serious biases as can occur with the prominence effect. Understanding the strengths and weaknesses of fast and slow thinking is a necessary first step toward valuing lives humanely and improving decisions. Full text: view source »

"Everybody in this community is at risk of dying.": An ethnographic exploration on the potential of integrating a palliative approach to care among workers in inner-city settings

PALLIATIVE & SUPPORTIVE CARE | Online – 7 May 2020 – At the end of life, the need for care increases. Yet, for structurally vulnerable populations (i.e., people experiencing homelessness and poverty, racism, criminalization of illicit drug use, stigma associated with mental health), access to care remains highly inaccessible. Emerging research suggests that enhancing access to palliative care (PC) for these populations requires moving care from traditional settings, such as the hospital, into community settings, like shelters and onto the street. Thus, inner-city workers (ICWs) (e.g., housing support and community outreach) have the potential to play pivotal roles in improving access to care by integrating a "palliative approach to care" in their work. Findings of this study reveal three themes: 1) Approaches, awareness, and training; 2) Workplace policies and filling in the gaps; and, 3) Grief, bereavement, and access to supports. In brief, ICWs who draw upon harm reduction strategies strongly parallel palliative approaches to care, although more knowledge/training on palliative approaches was desired. In their continuous work with structurally vulnerable clients, ICWs have the opportunity to build trusting relationships, and over time, are able to identify those in need and assist in providing palliative support. However, despite death and dying is an everyday reality of ICWs, many described a lack of formal acknowledgement by employers and workplace support as limitations. These findings contribute promising practices for enhancing equitable access to PC for society's most vulnerable populations by prioritizing front-line workers' perspectives on how best to integrate a palliative approach to care where structurally vulnerable populations live and die. Abstract (w. list of references): view source »

Although lay-people are acknowledged as important stakeholders, their perceptions and understanding of the terms "potentially inappropriate" or "futile" treatment have received little formal evaluation. When asked to describe "futile," or "inappropriate" treatment, community members [i.e., study participants] found the concept difficult to understand and the terminology inadequate, though when presented with a case describing inappropriate treatment, most participants recognized it as the provision of inappropriate treatment. Several themes emerged regarding participant difficulty with the concept, including inadequate physician-patient communication, lack of public emphasis on end-of-life (EoL) issues, skepticism that medical treatment can be completely inappropriate, and doubts and fears that medical futility could undermine patient/family autonomy. Participants also firmly believed that in situations of conflict, families should be the ultimate decision-makers. Public engagement in policy development and discourse around medical futility will first require intense education to familiarize the lay-public about use of inappropriate treatment at the EoL. Abstract: view source »

"A good death" during the COVID-19 pandemic in the U.K.: A report on key findings and recommendations

LONDON SCHOOL OF ECONOMICS & POLITICAL SCIENCE | Online – 28 April 2020 – Dealing with death and bereavement in the context of the COVID-19 pandemic will present significant challenges for at least the next three months. The current situation does not allow for families and communities to be involved in the process of death in ways in which they would normally hope or expect to be. In addition, mortality rates will disproportionately affect vulnerable households. The government has identified the following communities as being at increased risk: single parent households; multi-generational Black and minority ethnic groups; men without degrees in lone households and/or in precarious work; small family business owners in their 50s; and elderly households. This report presents a summary of findings and key recommendations by a team of anthropologists who conducted a public survey and 58 cross-community interviews... It explores ways to prepare these communities and households for impending deaths with communications and policy support. Research was focused on "what a good death looks like" for people across all faiths and for vulnerable groups. It examined how communities were already adapting how they dealt with processes of dying, burials, funerals and bereavement during the pandemic, and responding to new government regulations. It specifically focused on five transitions in the process of death, and what consultation processes, policies and communications strategies could be mobilised to support communities through these phases. Download/view at: view source »

Hastened death due to disease burden and distress that has not received timely, quality palliative care is a medical error

MEDICAL HYPOTHESES, 2020;142:109727. Measuring the quality of palliative care (PC) has many challenges due to its presence across multiple health sectors, variable skill and experience of providers and lack of defined processes for providing services. In Canada there is screening for symptoms and distress in most cancer centers, but not in non-cancer diseases. Screening for distress and disease burden can identify suffering, that when properly addressed, improves quality of life (QoL) and reduces depression and hopelessness that can lead to requests for hastened death. The authors' hypothesis is that some requests for hastened death (known as Medical Assistance in Dying or MAiD in Canada) are driven by lack of access to PC or lack of quality in the PC attempting to address disease burden and distress such that the resulting provision of hastened death is a medical error. The root cause of the error is in the lack of quality PC in the previous weeks, months and years of the disease trajectory – a known therapy that the system fails to provide. The evidence for PC addressing symptoms and improving QoL and mood as well as providing caregiver support is established. Early evidence supporting the use of psycho-therapeutics in emotional and existential distress is also considered. The authors present three cases of request for assisted death that could be considered medical error. The paper references preliminary evidence from a review of previous access to PC in a limited number of MAiD cases showing that only a minority were identified as having PC needs prior to the admission where MAiD was provided. The evidence linking disease burden to hopelessness, depression and hastened death is provided. The many studies revealing the inequity or under-servicing of the Canadian population with regards to PC are reviewed. The authors examine a recent framework for PC in Canada and point out the need for more aggressive use of standards, process and policies to ensure that Canadians are receiving quality PC and that it is equitably accessible to all. Full text: view source »

Also, treatments for symptoms in severe COVID-19 will be needed for patients whose advance care plan or advance decision to refuse treatment includes a decision not to escalate treatment beyond home based care. This article summarises key points from the National Institute for Health & Care Excellence (NICE) COVID-19 rapid guideline on managing symptoms (including at the end of life) in the community.¹ The guideline is part of a series of rapid guidelines on COVID-19, developed in collaboration with National Health Service (NHS) NHS England and NHS Improvement using interim process and methods. Recommendations are based on evidence and expert opinion, and have been verified as far as possible by NICE. Full text: view source »

1. 'COVID-19 rapid guideline: Managing symptoms (including at the end of life) in the community,' National Institute for Health & Care Excellence, 2020. Download/view at: view source »

Creating a seat at the table: How family meetings elucidate the palliative care social work role

JOURNAL OF PALLIATIVE MEDICINE | Online – 23 April 2020 – Palliative care social workers (PCSWs) play a crucial role in optimizing communication and family-centered care for seriously ill patients. However, PCSWs often struggle to demonstrate and receive open acknowledgment of their essential skill set within medical teams. This case discussion focuses on the care of patients and families surrounding family meetings to highlight the crucial role of the PCSW in: 1) Preparing the family; 2) Participating in the provider meeting; 3) Participating in the family meeting; and, 4) Following up after the meeting. The aim is to illuminate how the PCSWs can demonstrate their unique and essential skill set to medical teams and as a means of furthering the work of psychosocial clinicians throughout medical systems. As the medical model continues to shift toward family-centered care, it is crucial for medical teams to optimize their partnership with patients and families. PCSWs can offer a trauma-informed bio-psycho-social-spiritual lens that is instructed by continuity of care and exemplary clinical and rapport-building skills. PCSWs can play a critical role in optimizing communication, support, collaboration, and family-centered whole-person care. Abstract: view source »

Advances and challenges in European paediatric palliative care

MEDICAL SCIENCES | Online – 17 April 2020 – Advances in both public health and medical interventions have resulted in a reduction in childhood mortality worldwide over the last few decades; however, children still have life-threatening conditions that require palliative care (PC). Children's PC is a specialty that differs from PC for adults in many ways. The authors discuss some of the challenges, and some of the recent advances in paediatric PC. Developing responsive services requires good epidemiological data, as well as a clarity on services currently available and a robust definition of the group of children who would benefit from PC. Once a child is diagnosed with a life-limiting condition or life-limiting illness, parents face a number of complex and difficult decisions; not only about care and treatment, but also about the place of care and ultimately, place of death. The best way to address the needs of children requiring PC and their families is complex and requires further research and the routine collection of high-quality data. Although research in children's PC has dramatically increased, there is still a dearth of evidence on key components of PC notably decision making, communication and pain and symptom management specifically as it relates to children. This evidence is required in order to ensure that the care that these children and their families require is delivered. Full text: view source »

Previous mass casualty events have taught us much about how best to triage patients requiring care, and some of this work can be adapted to PC; but little has been written on how to manage those who are not offered life-sustaining measures. The authors advise acting now to stockpile medications and supplies used in PC, train staff to meet PC needs, optimize our space, refine our systems, alleviate the effects of separation, have critical conversations and focus on marginalized populations to ensure that all patients are cared for equitably. The SARS-CoV-2 pandemic has been tragic for many people worldwide. Failing to provide Canadians with effective PC would compound that tragedy. Full text: view source »

N.B. The International Association for Hospice & Palliative Care has compiled a list of resources relevant to palliative care and COVID-19 published by academia, civil society organizations, member states and special agencies of the United Nations, with links to all of the websites and documents listed. view source »

The desire to die in palliative care: A sequential mixed methods study to develop a semi-structured clinical approach

BMC PALLIATIVE CARE | Online – 15 April 2020 – As health professionals are frequently confronted with desire to die, a semi-standardized communication guide for dealing with desire to die has great potential for clinical practice. The fact that more practitioners participated in the Delphi survey than originally planned shows their great interest in the topic and its particular relevance in palliative care. The semi-structured clinical approach thus became a tool tailored directly towards everyday practice of people working in the field. This can include all professions directly in contact with palliative patients provided they have partaken in the mandatory training course: physicians, nurses, psychologists, social and spiritual care workers as well as volunteers. The authors expect the semi-structured clinical approach in conjunction with their training program to foster multi-professional competencies across all healthcare structures, especially on dealing with desire to die in patients with serious health-related suffering due to severe illness. The major achievement of this study is the creation of the first consensus-based semi-standardized approach for (proactively) assessing and optimally responding towards desire to die based on literature review, patient interviews and expert consent. Full text: view source »

Building a medical undergraduate palliative care curriculum: Lessons learned

JOURNAL OF PALLIATIVE CARE | Online – 13 April 2020 – Previous literature demonstrates that current palliative care (PC) training is in need of improvement for medical students in global, European and Canadian contexts. The training of medical undergraduates is key to ensure that the ongoing and increasing need for enhanced access to PC across all settings and communities is met. The authors describe building a comprehensive palliative and end-of-life care (EoLC) curriculum for medical undergraduates at their university. As with recent European and U.S. studies, they found that the process of university curriculum renewal provided a critical opportunity to integrate PC content, but needed a local PC champion already in place as an energetic and tireless advocate. The development and integration of a substantive bilingual (English and French) palliative and EoLC curriculum over the 4-year medical undergraduate program at the authors' university has occurred over the course of 14 years, and required multiple steps and initiatives. Subsequent to the development of the curriculum, there has been a 13-fold increase in students selecting our PC clinical rotations. Critical lessons learned speak to the importance of having a team vision, interprofessional collaboration with a focus on vision, plans and implementation, and flexibility to actively respond and further integrate new educational opportunities within the curriculum. Future directions for our PC curriculum include shifting to a competency-based training and evaluation paradigm. Findings and lessons learned may help others who are working to develop a comprehensive undergraduate medical education curriculum. Abstract (w. list of references): view source »

The authors conclude that hospice and PC services have an essential role in the response to COVID-19 by: 1) Responding rapidly and flexibly; 2) Ensuring protocols for symptom management are available, and training non-specialists in their use; 3) Being involved in triage; 4) Considering shifting resources into the community; 5) Considering redeploying volunteers to provide psychosocial and bereavement care; 6) Facilitating camaraderie among staff and adopt measures to deal with stress; 7) Using technology to communicate with patients and carers; and, 8) Adopting standardised data collection systems to inform operational changes and improve care. Full text: view source »

Palliative care and oncology

The case for focused palliative care education in oncology training

JOURNAL OF CLINICAL ONCOLOGY | Online – 9 April 2020 – In oncology, we often do not consider the importance of person-centered care in our daily clinical practice and how it relates to our training. Every day, in every oncology clinic, we make innumerable decisions on how to deliver bad news. Like most oncologists, we struggle with the words we choose. Do we begin by validating emotions, or asking how the patient and caregiver are coping? Is it necessary to ask permission: "Would you like to discuss what this means?" Is this the appropriate visit to discuss prognosis? Do we focus on the progression of the tumor or investigate for new symptoms? How long do we stay silent when our patients cry? Some of these difficulties are a consequence of our limited education in palliative care during oncology fellowship. In the scenario described, the subsequent words we choose will have a great impact on both the patient and his caregivers and how they process information and make decisions. Does the training of oncologists reflect the gravity of these clinical situations? Full text: view source »

Palliative care in long-term care

Current issues with implementing a palliative approach in long-term care: Where do we go from here?

PALLIATIVE MEDICINE | Online – 10 April 2020 – Given the aging population and its demands on healthcare systems worldwide, the long-term care (LTC) sector is being particularly challenged. Most countries are witnessing a changing profile of LTC residents, with residents entering LTC very frail with multiple comorbidities, resulting in more complex care for staff to manage. Moreover, the length of stay for residents are shorter than ever before, and LTC homes are becoming more hospice-like; but unlike hospices, they are heavily regulated with little flexibility to provide person-centered care. Even more troubling is the fact that capacity within LTC homes has not progressed at the same pace to meet the acuity level of this growing population, nor are they equipped to implement a palliative approach to care, which is evidenced by numerous reports of poor outcomes and costly reliance on hospitals to manage care for residents at end of life. Fortunately, both researchers and national funding agencies are beginning to recognize and respond to this emerging "crisis" within healthcare systems across countries with some large initiatives being implemented and evaluated… Full text: view source »

Oncologists can develop new communication skills that were not included in their fellowship curricula, skills that integrate into their visits the subjects that PC clinicians discuss routinely with patients referred to them. This review offers three questions matched to communication skills that can help oncologists explore key areas: 1) What is happening?; 2) How do you (and I) feel?; and, 3) What is important? … and discusses the "REMAP" strategy for making urgent medical decisions. The authors review the impact of community-based PC resources and telehealth on care quality, patient centeredness, and reducing costs. Full text: view source »

COVID-19: End-of-Life Care

Pandemic palliative care: Beyond ventilators and saving lives

CANADIAN MEDICAL ASSOCIATION JOURNAL | Online – 31 March 2020 – The severe acute respiratory syndrome Coronavirus 2 (SARSCoV-2) pandemic will likely strain our healthcare system beyond capacity, and palliative care (PC) services will be needed across many different care settings, including intensive care units, hospital wards, emergency departments and long-term care. Shared decision-making between clinicians and patients is a core process in planning for the end of life (EoL); however, in a pandemic, patient autonomy to choose life-prolonging measures or location of death could be severely restricted as a result of public health directives and resource availability, and some patients may necessarily be isolated at EoL. Previous mass casualty events have taught us much about how best to triage patients requiring care, and some of this work can be adapted to PC; but little has been written on how to manage those who are not offered life-sustaining measures. The authors advise acting now to stockpile medications and supplies used in PC, train staff to meet PC needs, optimize our space, refine our systems, alleviate the effects of separation, have critical conversations and focus on marginalized populations to ensure that all patients are cared for equitably. The SARS-CoV-2 pandemic has been tragic for many people worldwide. Failing to provide Canadians with effective PC would compound that tragedy. Full text (click on pdf icon): view source »

In the lay press

It's time to get serious about end-of-life care for high-risk Coronavirus patients

TIME MAGAZINE | Online – 30 March 2020 – According to a report … published in 2017, in the U.S. just 58% of people have had a conversation with their loved ones about end-of-life (EoL) wishes.¹ Only 25% have documented their EoL wishes in the form of an advance directive (AD), and less than 20% discussed those wishes with their healthcare provider. This often leaves families in the incredibly difficult position of making life and death decisions on behalf of their sick loved ones. Ideally, one engages in advance care planning early in life, before a serious illness or medical crisis ensues. But, the reality is, COVID-19 has taken away our control over many things, including, possibly, our final days. In the absence of an AD, an established healthcare proxy or available next of kin, the default approach is aggressive, invasive treatment in the intensive care unit. This traditionally can include placing a thick, hard, plastic tube down your windpipe, inserting needles into your blood vessels, and using machines to maintain your regular bodily functions (a ventilator to help you breathe, a dialysis machine that filters your blood when your kidneys are damaged). In the new era of COVID-19, the protocols aren't as clear. Some hospitals are considering a do-not-resuscitate policy for all infected patients. Bioethicists have weighed in on the need for hospitals to create triage committees, a team of nurses and doctors that evaluate COVID-19 cases and remove the burden of rationing care from the individual providers. Given that we know only a minority of elderly people and those living with serious illnesses who are put on ventilators will survive this pandemic to leave the hospital, this is a reality that must be discussed now. view source »

1. 'Views and Experiences with End-of-Life Medical Care in the U.S.,' Kaiser Family Foundation and The Economist, April 2017. [Noted in 1 May 2017 issue of Media Watch (#510, p.3)] Download/view at: view source »

Concerns included scarcity of personal protective equipment, a lack of hospice-specific guidance on COVID-19, anxiety about needing to care for children and other relatives, and poor integration of palliative care (PC) in the acute setting. The hospice sector is capable of responding flexibly and rapidly to the COVID-19 pandemic. Governments must urgently recognise the essential contribution of hospice and PC to the COVID-19 pandemic, and ensure these services are integrated into the healthcare system response. Abstract: view source »

N.B. Dr. Danila Valenti, Medical Director of UO Rete delle Cure Palliative, a palliative care unit in Bologna, northern Italy, explains some of the main challenges facing healthcare professionals during the Coronavirus crisis and shares advice for others who are approaching a similar situation in their country. European Association for Palliative Care blog: view source »

End-of-life care in the emergency department for the patient imminently dying of a highly transmissible acute respiratory infection (such as COVID-19)

CANADIAN JOURNAL OF EMERGENCY MEDICINE | Online – 26 March 2020 – This document provides a framework for healthcare providers caring for Emergency Department patients with confirmed or suspected COVID-19 who are nearing end of life (EoL). Care of the imminently dying patient should not differ significantly from standard best palliative care practices, but there are some pertinent modifications to consider with respect to: 1) Non-pharmacological management; 2) Pharmacological management; 3) Withdrawal of life sustaining treatments; and, 4) Support for staff who are providing EoL care. Download/view at: view source »

Dr. Iain Lawrie, president of The Association for Palliative Medicine of Great Britain & Ireland, told the BBC that PC teams around the country were working together to create the guidance. He said the impact of the virus was likely to change how PC would be delivered in future. view source »

Also of particular interest:

Stringent control of opioids: Sound public health measures, but a step too far in palliative care?

CURRENT ONCOLOGY REPORTS | Online – 13 March 2020 – Opioids are the only class of drug with the proven ability to control severe pain. The introduction of stringent opioid prescribing restrictions has inevitably impacted upon the ability of those prescribing opioids for advanced life-limited disease to practice as previously and could limit the supply of adequate pain relief to patients with cancer. This review considers the evidence that symptom management of patients with advanced cancer contributes to the "opioid problem" and whether there is adequate recognition of the risks involved. The literature suggests that the risk of opioid abuse is low in the palliative care (PC) population as is the risk of legal consequences for doctors prescribing opioids at the end of life. However, as many patients with cancer are living longer or surviving with chronic pain, PC physicians must be cognisant not only of the risks of long term opioid use but also of the risk of opioid misuse. Adherence to evidence or consensus-based guidelines is necessary to avoid inappropriate prescribing. In PC, it is appropriate not only to exercise a reasonable degree of opioid control and surveillance, primarily for the good of society, but also to ensure that the ability to treat pain in patients with advanced malignant disease is not compromised. Abstract (w. list of references): view source »

Early impact of the 2014 World Health Assembly resolution on palliative care: A qualitative study using semi-structured interviews with key experts

JOURNAL OF PALLIATIVE MEDICINE | Online – 19 March 2020 – In 2014, the World Health Assembly (WHA) approved the Resolution "Strengthening of palliative care (PC) as a component of comprehensive care throughout the life course" (WHA67.19), urging national governments to carry out actions to develop PC. Although we lack a set of indicators to assess the global impact of Resolution WHA67.19, the authors identified several efforts made to explore and to describe cognate actions carried out at different levels.In 2015, the World Health Organization (WHO) Non-Communicable Disease Country Capacity Survey showed that a minority of countries include PC in their national policy for non-communicable diseases, and reported that PC is least likely to have funding, compared with other non-communicable disease services. In 2016, a civil society report pointed out that donor countries had not yet given adequate provision to facilitate the implementation process for the Resolution, although examples of progress on the integration of PC into the health policy were cited (India, Colombia, Romania); progress in PC education was illustrated (Jordan, Panama, Morocco); and improvements in drug availability (Mexico) and in rolling out PC services (Ethiopia) were presented. Also in 2016, the WHO Secretariat reported a range of actions by Member States, the WHO headquarters, and regional and country offices focused on access to oral morphine and essential medicines; the integration of PC into global disease control and health system plans; and information about guidance, tools, and training programs on PC. The same year, the WHO published a practical manual on how to plan and implement PC services integrated into existing health care services. In 2017, an edited collection Building Integrated Palliative Care Programs & Services was published by a group of activists aiming to assist governments and providers to build and strengthen PC provision. However, a global survey of PC in 2017 concluded that a mere 14% of the world population has access to the highest levels of PC provision, while 53% live in countries where PC delivery is localized to a significant degree and lacks sufficient integration with the wider health and social care system to achieve high coverage.Since the approval of the Resolution, PC has been integrated in subsequent WHO or WHA resolutions, but these are non-binding in character, making for difficulties in global implementation and in the assessment of impact on national policies. Full text: view source »

Four themes characterised challenges in delivering support for families: 1) Emotional difficulties for families; 2) Practical and social difficulties for families; 3) Funding/resources; and, 4) Staff training/numbers. U.K. national end-of-life guidance for adults repeatedly acknowledges families should have honest, sensitive and well-informed conversations about dying, death and bereavement. Specifically, guidance states that dependent children require tailored support and, if patients with children want support, healthcare professionals should offer information and encourage family communication. To meet guideline requirements, this survey suggests support for children and families within service models needs to be more proactive; hospices appear more attuned to addressing needs of children once they arise, rather than preventing them from arising. Although this was a survey of U.K. hospices it has relevance in an international context. The hospice movement is developing globally and shared understanding of support delivery in the context of families with dependent children can help meet emerging and growing service requirements across different countries. Full text: view source »

Palliative care advocacy: Why does it matter?

JOURNAL OF PALLIATIVE MEDICINE | Online – 9 March 2020 – Widespread unfamiliarity with the palliative care (PC) approach to serious health-related suffering challenges PC advocacy at all levels. Misunderstandings are pervasive throughout the United Nations system, national healthcare systems, the media, and the general public. Policymakers and providers who are somewhat familiar with PC stigmatize this relatively new public health approach as only appropriate for end of life, or only for cancer, etc. Such misunderstandings undercut public policy and limit service delivery to the private and charitable sectors, which can only meet a fraction of the growing global need. Evidence-based testimony by providers trained in basic PC, and service users who have benefited, can support recognition of the universal nature of the right. Success stories can assuage uninformed concerns about additional costs of integrating PC services in the context of hospital-based systems and allay widespread fears that associate essential PC medicines with illegal "drugs." The International Association for Hospice & Palliative Advocacy Program and the organization, its board, and staff members will continue to provide support and guidance to all its stakeholders, including global, regional, and national PC organizations, members, policy makers, patients, caregivers, and professionals working to relieve suffering and improve the quality of life of millions of patients around the globe. Full text: view source »

In the lay press

Fraser Health vs. the Delta Hospice Society: The usurpation of personal responsibility and…

CANADA (British Columbia) | The Delta Optimist (Ladner) – 8 March 2020 – Last month, Fraser Health followed through on an ultimatum to the Delta Hospice Society: provide Medical Assistance in Dying or lose funding. The Delta Hospice Society refused to compromise their principles that palliative care (PC) "intends neither to hasten or postpone death." This definition of PC is not specially crafted by the Delta Hospice Society; it is part of the World Health Organization's definition of PC. The story of the Delta Hospice Society is the story of private citizens who want to give back to their community by caring for their neighbours. Over the course of almost 30 years, hundreds of people have donated time and/or money to the hospice. In 2007, Fraser Health and the provincial government partnered with the hospice, recognizing the excellent work it was already doing and assisting the hospice to build and operate a new 10-bed facility. This illustrates Canadian society at its finest; people from all walks of life coming together to help care for their fellow citizens, with those actions supported by local governments. Fraser Health's withdrawal of funding shatters this model of cooperation. Instead of enabling a compassionate citizenry to take initiative to care for their neighbours, Fraser Health is squashing this personal initiative. view source »

These harms arise on both individual and communal levels and cannot be ignored. The aim of this article is not to offer a definition of false hope, because the phenomenon of false hope is too complex for any simple definition. The author makes four points while outlining the FHH argument: 1) Consumer medicine and false hope are connected; 2) Providers and patients are very vulnerable in the system of consumer medicine; 3) Providers have a responsibility to stand up against false hope; and, 4) How the FHH argument could perhaps offer a footing to resist giving in to false hope. Full text: view source »

Wish to die in older patients: Development and validation of two assessment instruments

JOURNAL OF THE AMERICAN GERIATRICS SOCIETY | Online – 29 February 2020 – The wish to die may be different in geriatric patients than in younger terminally ill patients. This study aimed to develop and validate instruments for assessing the wish to die in geriatric patients. The Schedule of Attitudes Toward Hastened Death (SAHD) was adapted to the older population (SAHD‐Senior). A second tool was developed based on qualitative literature, the Categories of Attitudes Toward Death Occurrence (CADO). After cognitive pretesting, these instruments were validated in a sample of patients admitted to a geriatric rehabilitation unit. The SAHD‐Senior showed good psychometric properties and a unifactorial structure. In the studied sample, 12.9% had a SAHD‐Senior score of 10 or higher, suggesting a significant wish to die. Associations were observed between high levels of the SAHD‐Senior and advanced age, high levels of depressive symptoms, lower quality of life, and lower cognitive function. The CADO allowed for passive death wishes to be distinguished from wishes to actively hasten death. According to the CADO, 14.9% of the sample had a wish to die. The two instruments showed a concordance rate of 90.1%. The wish to die in older patients admitted to rehabilitation can be validly assessed with two novel instruments. The considerable proportion with a wish to die warrants investigation into concept, determinants, and management of the wish to die. Abstract: view source »

Palliative care and the tragedy of the commons

JOURNAL OF PALLIATIVE CARE | Online – 5 March 2020 – Many of the paradoxes of end-of-life care (EoLC), including the combination of overtreatment and low quality of life (QoL), can be explained in part by the fact that the structure of EoLC is a tragedy of the commons, where no one provider "owns" the patient or is responsible for the outcomes of treatment. This article outlines the way in which applying frameworks from economics to EoLC can contribute to conversations about reform, particularly in terms of how to reform palliative care to harness its full potential to limit overtreatment, improve QoL, and lower costs. The authors use principles from economics and political science to propose a series of possible reforms to EoLC, starting with reimbursement bundling and ending with pause points and more conscious ownership of care decisions by patients and their teams of providers. Abstract (w. list of references): view source »

At the between-person level, results from this study were in line with previous research that showed how emotionally demanding jobs entail a higher frequency and intensity of daily interactions with patients and families that in turn requires regular use of emotional labour regulation. In this sense, on days where HCPs witness suffering patients frequently, they will regulate their positive emotional display. In this sense, regular use of emotional labour regulation strategies can expose HCPs to reduced well-being. The results of this study are in line with traditional studies that demonstrate how emotional connections are a vital component of the therapeutic relationship in the hospice context, expressing their feelings when healing suffering is a fundamental part of this relationship. Additionally, in relation to the cross-sectional moderation effect, the authors found that burnout moderated the within-person relationship between seeing patients suffering, and daily emotion work display such that this relationship was stronger for those high in burnout. Full text: view source »

Power and perils of prediction in palliative care

THE LANCET, 2019;395(10225):680-681. As artificial intelligence (AI) spreads across clinical specialties, its potential to revolutionise healthcare at the individual and population levels has placed it alongside genomics as one of the frontiers in medicine. The promise that AI could help health systems and clinicians optimise patient care in core domains of diagnosis, prognosis, and treatment drives widespread interest and investment. Palliative care (PC) dedicates itself to improving the quality of life and experiences of people dealing with serious illness. Interprofessional teams work to alleviate symptoms, facilitate communication, prioritise psychological care, and mitigate distress. At its core, PC is both motivated and challenged by irreducible uncertainty and contextual variability. Machine learning technologies can be useful in PC, especially as clinicians and health systems seek to allocate and improve access to scarce PC resources. The potential of machine learning models in PC is their capacity to rapidly analyse data from various sources to predict who is likely to progress to unacceptable functional dependence or even die. Such predictions can signal who might need additional support, such as targeted communication or a palliative care consult. Appropriately timed introduction of PC services improves outcomes such as quality of life, patient and caregiver satisfaction, and healthcare spending efficiency. Figuring out who should get specialty PC and when is one of the field's most pressing questions. Full text: view source »

In the Lay Press

British Columbia cuts funding for hospice operator that won't provide medically assisted death

CANADA (British Columbia) | CTV News (Vancouver) – 25 February 2020 – A hospice operator in Metro Vancouver is losing out on roughly $1.5 million in annual funding after refusing to provide patients access to medically assisted death. Every hospice in British Columbia that receives more than half its funding from the government is required to provide assisted dying service for patients who request it – but the Delta Hospice Society has dug in its heels, arguing that doing so would go against its principles. That standoff resulted in an ultimatum from the Fraser Health Authority late last year, and on Tuesday the provincial government announced plans to terminate its contract with the hospice operator. The government said funding for the society will dry up on 25 February 2021, which gives the operator the 365 days' notice required to end its agreement "without cause." The society runs a small, 10-bed facility called the Irene Thomas Hospice on a parcel of land in Delta that's owned by Fraser Health. The government promised the health authority will continue to ensure local residents "continue to have access to those beds" after the society's contract is up. view source »

The developed data collection process consisted of three questionnaires: 1) Basic practice descriptors (32 items); 2) Clinical data query (32 items); and, 3) GP-completed questionnaire (21 items). Data extraction from general practice software was performed for 97 decedents of 10 GPs and gathered data on prescriptions, investigations and referral patterns. Reports on care of 272 decedents were provided by 63 GPs. The GP-completed questionnaire achieved a satisfactory level of validity and reliability. The data collection process developed and tested in this study is feasible and acceptable for Australian GPs, and comprehensively covers the major components of EoLC. Future studies could develop an automated data extraction tool to reduce the time and recall burden for GPs. These findings will help build a nationwide integrated information network for primary EoLC in Australia. Abstract: view source »

Physician Orders for Life-Sustaining Treatment and limiting overtreatment at the end of life

JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION | Online – 16 February 2020 – Lee and colleagues examine the association between Physician Orders for Life-Sustaining Treatment (POLST), which involve portable medical orders that document treatment limitations for out-of-hospital emergency care and for limiting overtreatment at the end of life (EoL).¹ The authors studied adults with chronic life-limiting illnesses who were hospitalized within the last 6 months of life and who had completed a POLST before their last inpatient admission. Among 1,818 patients enrolled, 656 (36%) had POLST orders for "full treatment" and 1,162 had orders for either "limited additional interventions" (42%) or "comfort measures only" (22%). Among the combined latter 2 groups, 472 (41%) were admitted to the intensive care unit (ICU), 436 (38%) received POLST-discordant intensive care, and 204 (18%) received POLST-discordant life-sustaining treatments, defined as mechanical ventilation, vasoactive infusions, new renal replacement therapy, or cardiopulmonary resuscitation. Patients with cancer or dementia were less likely to receive POLST-discordant intensive care, whereas patients hospitalized for traumatic injuries were more likely to receive POLST-discordant intensive care. These results are sobering. The authors conclude that patients with treatment-limiting POLSTs hospitalized near the EoL often receive care that seems inconsistent with their preferences. Full text: view source »

Bereaved families' perspectives of end-of-life care. Towards a bicultural Whare Tapa Whā older person's palliative care model

JOURNAL OF CROSS-CULTURAL GERONTOLOGY | Online – 20 February 2020 – The authors conducted a bicultural study with bereaved New Zealand Māori (indigenous) and non-indigenous family carers who, on behalf of their older family member, reflected on the end of life (EoL) circumstances and formal and informal care experienced by the older person. Interviews were undertaken with 58 people (19 Māori and 39 non-Māori), who cared for 52 family members who died aged over 80 years. A Kaupapa Māori thematic analysis of family/whānau perspectives identified examples of good holistic care as well as barriers to good care. These are presented in a proposed Whare Tapa Whā Older Person's Palliative Care model. Good healthcare was regarded by participants as that which was profoundly relationship-oriented and upheld the older person's mana (authority, status, spiritual power) across four critical health domains: Whānau (social/family), Hinengaro (emotional/mental), Wairua (spiritual) and Tinana (physical) health domains. However, poor healthcare on one level impacted on all four domains affecting (reducing) mana (status). The "indigenous" model was applicable to both indigenous and non-indigenous experiences of EoL care for those in advanced age. Thus, Indigenous perspectives could potentially guide and inform EoL care for all. Abstract (w. list of references): view source »

In the lay Press

OP-Ed: Think you want to die at home? You might want to think twice about that

CALIFORNIA | The Los Angeles Times – 16 February 2020 – Nathan Gray, an assistant professor of medicine and palliative care at Duke University School of Medicine collaborated with an artist who draws comics on medical topics to "illustrate" Dr. Gray's perspective on dying at home. Download/view at: view source »

1. 'Association of Physician Orders for Life-Sustaining Treatment with ICU admissions among patients hospitalized near the end of life,' Journal of the American Medical Association, published online 16 February 2020. Full text: view source »

A multitude of definitions now exists, with varying emphasis on early intervention versus EoLC. In addition, a new nomenclature has emerged to conceal the end-of-life component of PC despite its continued importance, adding further to the confusion. Uncertainty within the specialty about the definition of PC will not reassure referring physicians and policymakers about its meaning nor convince them of its importance. Accuracy and clarity in the form of an established definition of PC are required to reduce misconceptions, facilitate clinical and academic development, and promote effective communication. This definition should acknowledge both expertise in EoLC and its relevance for improving outcomes early in the course of advanced cancer, and should be disseminated widely and practiced consistently. Abstract: view source »

Looking back, and ahead: A call to action for increasing the hospice and palliative medicine specialty pipeline

JOURNAL OF PALLIATIVE MEDICINE | Online – 13 February 2020 – Thanks to the efforts of many individuals and organizations, the field of hospice and palliative medicine (HPM) has undergone unprecedented growth over the last two decades. To meet the needs of seriously ill patients and families in inpatient, outpatient community setting in the future, the field of HPM must develop innovative strategies to expand the specialist workforce pipeline. With 148 programs participating in the National Residency Matching Program and 285 matched applicants in 2019, the specialty of HPM can barely replace those who are retiring or leaving the field. The authors call for a renewed and coordinated effort to increase the applicant pool for HPM fellowship positions, as well as greater access to specialist HPM training through expanded traditional fellowship programs and innovative specialist training pathways. Without such an expansion, our specialty will struggle to serve those patients and families who need us most. Abstract: view source »

In the Lay Press

Medical aid in dying not driven by lack of access to palliative care: New study

CANADA (Ontario) | The Canadian Press – 12 February 2020 – Medical aid in dying is not being driven by factors such as poverty, isolation, or lack of access to proper palliative care (PC), according to a new study by Canadian researchers.¹ The study dispels concerns that vulnerable people were being pushed into requesting medical aid in dying because they had few other options, says lead author James Downar, PC specialist at The Ottawa Hospital and the University of Ottawa. "When I look at this data…it tells me that (medical aid in dying) is really not being driven by a lack of access of to PC," Downar said in an interview. He added that the data also shows the procedure is not being driven by "socioeconomic vulnerability." Medical aid in dying was legalized in Quebec in 2014 and then across Canada in June 2016. The study analyzed clinical and socioeconomic data from 2,241 Ontarians who received the procedure between June 2016 and October 2018. Researchers compared the data to those of 186,814 Ontario residents who died during the same time period. Downar said the study is the first of its scale to be conducted on medical aid in dying and benefited from Canadian data. He said he wasn't surprised by the results because studies in the U.S. and in Switzerland produced similar findings. view source »

1. 'Early experience with medical assistance in dying in Ontario, Canada: A cohort study,' Canadian Medical Association Journal, published online 11 February 2020. Abstract: view source »

Findings of this review provide an initial blueprint for PC research funders and policymakers to contribute to the future research agenda for PC from a patient and healthcare professional perspective. Given that funding resources are limited, the importance of collaboration and international approaches to PC is growing, these findings may help to inform this debate. Methodologically, a standardised approach and reporting for priority setting is advocated allowing for increased validity and comparability of findings from across PC settings. Due to varied methods and analytical techniques, an additional challenge was presented for the authors of this review when trying to compare and weigh studies. Future attempts to set research priorities should involve a multidisciplinary representation of stakeholders, such inclusion will provide credibility and enhance the feasibility of the developed priorities. Whilst it is outside the remit of this review to specify an appropriate priority setting methodology, the conduct of any such exercises should be governed by methodological guidelines, clear objectives and defined criteria and concepts, for identifying and ranking priorities. Doing so, will aid the transparency of the process and credibility of the results. Full text: view source »

The overlap between geriatric medicine and palliative care: A scoping literature review

JOURNAL OF APPLIED GERONTOLOGY | Online – 2 February 2020 – With an increasing aging population worldwide, there is a growing need for both palliative care (PC) and geriatric medicine (GM). It is presumed in medical literature that both specialties share similar goals about patient care and could collaborate. To inform future service development, the objective of this review was to identify what is currently empirically known about overlapping working practices. This article provides a scoping literature review on the relationship between GM and PC within the U.K.. The review encompassed literature written between 1997 and 2019… Three themes were identified: 1) Unclear boundaries between specialties; 2) Communication within and between specialisms; and, 3) Ambiguity of how older people fit in the current healthcare system. The authors suggest that more empirical research is conducted about the overlap between PC and GM to understand how interprofessional working and patient care can be improved. Abstract: view source »

Drivers of care costs and quality in the last 3 months of life among older people receiving palliative care: A multinational mortality follow-back survey across England, Ireland and the U.S.

PALLIATIVE MEDICINE | Online – 3 February 2020 – This large international study of older people known to palliative care (PC) services found that in the last three months of life, hospital care accounts for over 80% of total health and social care costs. Community and PC costs were low... Care costs differed between countries, being the lowest and most homogeneous in England. The 10% highest cost patients accrued four times the care costs of the remaining 90%. Being aged ⩾ 80 years and having difficulty living on current income (indicating poverty) were significantly associated with higher total costs across all three countries. Clinical factors were not or only marginally influential. Care quality was highest in PC unit/in-patient hospices. Poor home care was associated with higher hospital costs. The findings of this first major study to compare costs and experiences of people in different countries near the end of life (EoL) suggest that improving PC access and intensity is an essential priority for healthcare policy, especially for non-cancer patients who had least access. Cost distributions in England (London) were more homogeneous and with lower mean costs than in the U.S. (New York, San Francisco) and Ireland (Dublin), which warrants further investigation. Poverty, increased age and poor home care were drivers of high costs and should be a target for future interventions to improve care quality and value at the EoL. Full text: view source »

During the 6-month study period, the hospice agency received 1,596 after-hours calls. The number of calls averaged 10.3 per night. Common clinical-related calls included consultations about the shortness of breath (10.2%) and pain (9.5%). A total of 37.7% of the calls were non-clinical, non-emergency in nature, including requests for supplies (29.6%) and medication refills (8.1%). There were statistically significant differences between teams in the numbers of supply request calls, medication refill request calls, and calls associated with clinical-related issues. Also, there was a statistically significant difference in the after-hours calls across teams that resulted in dispatching staff to a home. These findings suggest that many after-hours calls would be more appropriately addressed during regular daytime hours. There are significant across-team differences that are not yet well understood. Further studies are needed to determine how to reduce the number of after-hours calls. Abstract: view source »

How cancer supportive and palliative care is developed: Comparing the policy-making process in three countries from three continents

INDIAN JOURNAL OF PALLIATIVE CARE, 2020;26(1):72-79. Several factors are involved in how cancer palliative care (PC) policy is included in policymakers' agenda. First, understanding a necessity as a result of an increase in the number of chronic patients in need of care; second, raising public awareness and acceptance as a result of sensing the physical and non-physical care outcomes, such as physical and financial access; and, third, attracting the attention of policymakers and other providers of financial and non-financial resources, including the private and charity sectors. In the formulation of policies, the main issue is the government's protective role, which in the U.K. includes all supportive duties, while in Malaysia and South Africa the government only fulfills some of these tasks, with the non-governmental sector sometimes taking them over. In the field of policy implementation, it seems that there are three different methods of providing supportive and PC: government and non-government provision of care through collaborative policy-making and planning in the U.K., potent non-government and limited government care provision with a feeble government policy-making in Malaysia, and non-government care provision through centralized and imperative government policy-making and planning in South Africa. Finally, three types of evaluations are involved, proportional to the systems of care provision: a government and internal evaluation in the U.K., a non-governmental internal evaluation in Malaysia, and a combination of internal and external evaluations in South Africa. Full text: view source »

In the Lay Press

"We must act now to save our hospices – or children will go without care"

U.K. | The Daily Mirror – 30 January 2020 – One of many hospices across the country threatened with closure as Britain faces an end-of-life care crisis, Acorns' shortage of National Health Service (NHS) funding means it is increasingly reliant on donations and charity shops. It needs to raise £2 million to continue to support families across the Black Country. As part of its long-term plan, NHS England has pledged to raise funding for children's hospices to £25 million in 2023-2024, and the Conservative Party pledged to "support our precious hospices" in its election manifesto. But hospice and healthcare charity Sue Ryder says this is a "sticking plaster" and that "warm words do not begin to address the underlying problems". A report [sic] from Together For Short Lives, a group which represents hospice users, warns of a "children's palliative care (PC) workforce crisis." It says services are at "breaking point" because of a growing shortage of PC doctors and nurses. The report shows there are just 15 children's PC consultants in the U.K. when there should be 40 to 60. view source »

This study also makes clear that counselling entails more than just providing information on (collecting) medication. Counsellors can play an important role for people who wish to self-determine the timing and manner of their end of life, by having an open non-judgemental attitude, providing trustworthy information and being available. These positively valued aspects of demedicalised assistance in suicide can provide recommendations for physicians taking care of patients who wish to self-determine the timing and manner of their EoL. Full text: view source »

In the Lay Press

New Jersey legislation to expand hospice and palliative care

U.S. (New Jersey) | Hospice News – 22 January 2020 – New Jersey Governor Phil Murphy recently signed into law a piece of legislation designed to raise public awareness of hospice and palliative care (PC). The state's legislature is currently mulling two additional bills intended to boost awareness and utilization of those services. The new law, designated S-3118, requires the state's Commissioner of Health to establish a public awareness campaign to foster community-wide discussions and to promote early conversations about advance care planning (ACP) and patient preferences to improve decision-making at the end-of-life (EoL). The additional bills still under consideration include S-3116 and S-3117, which would require certain healthcare facilities to train all administrative and professional staff to complete annual training on ACP and EoL care, the use of advance directives and Physician Orders for Life-Sustaining Treatment forms, as well as provide patients with information about these services and hospice and PC. S-3116 would apply to assisted living facilities, dementia care facilities, nursing homes, comprehensive personal care homes, residential healthcare organizations, hospitals and long term care providers. Bill S-3117 would establish similar requirements for hospital emergency departments. view source »

Publishing Matters

Do journals contribute to the international publication of research in their field? A bibliometric analysis of palliative care journal data

PALLIATIVE MEDICINE | Online – 23 January 2020 – Research is important internationally, impacting on health service provision and patient benefit. Journals play an important dissemination role, but there may be geographical bias, potentially affecting access to evidence. To understand if there is a relationship between the continent of journals and that of contributing authors, the authors of this study analyzed five journals: three published in Europe (Palliative Medicine, BMJ Supportive & Palliative Care, and BMC Palliative Care) and two in North America (Journal of Pain & Symptom Management and Journal of Palliative Medicine). Authors were from 30+ countries, but mostly North America (54.18%) or Europe (27.94%). The odds of an author being from a North American institution increase 16.4 times … if the region of journal publication is North America. The odds of an author being from a European institution is 14.0 times … higher if the region of journal publication is Europe. Publishers, editors and authors are concentrated in North America or Europe. North American authors are more present in North American journals and European authors in European journals. This polarised approach, if replicated across readerships, may lead to research waste, duplication, and be sub-optimal for healthcare development. Abstract (w. list of references): view source »

Alternatively, set point(s)-of-entry to end-of-life services could be identified, e.g., harm-reduction service or hospitalization for acute exacerbations. Furthermore, an increased attention to advance care planning for this patient group might be an option. Despite patient's denial of disease and dying, it may, for example, be revealing to confront them by asking the surprise question in an opposite way: "would you be surprised if you died in the next 12 months?" Such a question could be the start of exploring attitudes on and acceptance of death, dying and disease for both patients, their proxies and healthcare professionals, volunteers and experts-by-experience. From this study it appeared that many elements of the World Health Organization definition of PC seem a bit too ideal or are challenged within the actual care practice for patients with SUD. Full text: view source »

Mental healthcare and palliative care: Barriers

BMJ SUPPORTIVE & PALLIATIVE CARE | Online – 13 January 2020 – Psychological symptoms are common among palliative care (PC) patients with advanced illness, and their effect on quality of life can be as significant as physical illness. The demand to address these issues in PC is evident, yet barriers exist to adequately meet patients' psychological needs. This article provides an overview of mental health issues encountered in PC, highlights the ways psychologists and psychiatrists care for these issues, describes current approaches to mental health services in PC, and reviews barriers and facilitators to psychology and psychiatry services in PC, along with recommendations to overcome barriers. Patients in PC can present with specific mental health concerns that may exceed PC teams' available resources. PC teams in the U.S. typically do not include psychologists or psychiatrists, but in PC teams where psychologists and psychiatrists are core members of the treatment team, patient well-being is improved. Psychologists and psychiatrists can help meet the complex mental health needs of PC patients, reduce demands on treatment teams to meet these needs and are interested in doing so; however, barriers to providing this care exist. The focus on integrated care teams, changing attitudes about mental health, and increasing interest and training opportunities for psychologists and psychiatrists to be involved in PC, may help facilitate the integration of psychology and psychiatry into PC teams. Abstract: view source »

Bereavement support: From the poor cousin of palliative care to a core asset of compassionate communities

PROGRESS IN PALLIATIVE CARE | Online – 12 January 2020 – The negative consequences of bereavement and the disruption of social relationships put the impact of bereavement squarely into a public health perspective. Adopting and strengthening a compassionate communities approach is necessary, not only for end-of-life care for dying people but also for providing bereavement support. Many palliative care services continue to adopt an unhelpful standardised approach in offering bereavement support. So, who provides support to the bereaved? Who needs support and to what extent? Importantly, who is perceived by bereaved people to have offered them support and was it helpful? Based on reported experiences of the bereaved in a national Australian survey, the majority of this support is provided in informal and other community settings by a range of people already involved in the everyday lives of those recently bereaved. A public health approach to bereavement care is needed to support "everyday assets" in the community without over-reach from professional services. Findings provided empirical evidence for building a community's capacity to provide the type of social and practical support advocated by the compassionate communities approach. This body of work, innovative in content, conceptual model and recruitment approach, challenged the existing bereavement support structure and provision and has influenced practice and policy. Abstract: view source »

Studies indicate that people with substance use disorders often divert pain medication from their friends or relatives, a complication in the outpatient palliative setting where family or friends frequently serve as caregivers for the patient. Chronic pain management thus becomes a balancing act for the care team; PC professionals question how to ensure end-stage or chronic patients receive the pain-relieving medication they need while not contributing to the possibility of drug diversion. First page view (w. link to references): view source »

Life, love, hope, faith, and death – too complex for Likert

JOURNAL OF PALLIATIVE CARE | Online – 7 January 2020 – More research to examine factors contributing to healthcare disparities at the end of life (EoL) is greatly needed. This article outlines a failed attempt to quantify some of the motivators in medical decision-making for African American families faced with a decision to pursue or forego a percutaneous endoscopic gastrostomy in a loved one at the EoL. It explores the complexities of spirituality, history, culture, and death in the authors' patient population in Charleston, South Carolina, where healthcare disparities are well-documented, and distrust has deep historical roots. It outlines the need for qualitative research, where the defining role of the researcher is to practice the paramount palliative skill of listening. Abstract: view source »

Community participation in palliative care: Reflections from the ground

PROGRESS IN PALLIATIVE CARE | Online – 5 January 2020 – Community participation is a frequently mentioned theme in palliative care projects. Yet most of the projects claiming to be community-led have only minimal participation from the community, usually in the form of resource mobilization. Achieving higher levels of participation, the process of involving community collectives as partners in running, and later taking responsibility to sustain and own the program, is more complex and more difficult to achieve. Common barriers include lack of the mandatory preparatory work to understand the social and political dynamics of the community, facilitators' values and agenda assuming the dominant role in the project, unwillingness on the part of facilitators to give up control and problems with the "political process" that should go with capacity building. Another issue is that community mobilization, being a dynamic cascading process, does not yield to conventional methods of evaluation. Abstract: view source »

The four key decisional themes highlighted in this article – 1) What is hospice care?; 2) Why might hospice care be helpful?; 3) Where is hospice care provided?; and, 4) How is hospice care paid for? – offer tangible touch points that hospice providers can focus on when initiating conversations and shared decision-making around hospice care. These themes may provide a framework to design patient-centered interventions designed to improve communication around hospice decision-making. Full text: view source »

The effect of early and systematic integration of palliative care in oncology on quality of life and health care use near the end of life: A randomised controlled trial

EUROPEAN JOURNAL OF CANCER, 2019;124(1):186-193. To the authors' knowledge, this is the first European study that examined the effect of early integration of palliative care (PC) in oncology on QoL near the end of life (EoL) of cancer patients. They found statistically significant beneficial effects in QoL at the EoL by providing patients with monthly semi-structured consultations with a specialised PC nurse, starting early in the disease trajectory and continuing until death. The plausible mechanism of the long-term benefit of early integrated PC versus on-demand PC could be related to the fact that patients and PC professionals have more time to build a relationship, to focus on coping with the progressive and worsening illness, to address decision-making in relation to cancer treatment and EoL care, and to enhance symptom assessment and management. Research has shown that adequate symptom management, effective communication, and a strong therapeutic bond contribute to quality EoL care. Full text: view source »

Meaningful deaths: Home health workers' mediation of deaths at home

MEDICAL ANTHROPOLOGY | Online – 23 December 2019 – After several generations in the U.S. in which medicalized deaths have become normal, more people are seeking to die at home. However, home deaths lead to emotional uncertainty and practical confusion, in which kin lack a cultural script. In this article the author draws on interviews with patients' kin and their African immigrant home health workers, and show that the care workers helped create a more meaningful death through their knowledge of death, familiarity with the physical processes of death, and their presence, which they used to create pathways for their patients and their kin. Abstract: view source »