As more jurisdictions across different countries begin to consider using cannabis and cannabinoids as a therapy during end-of-life care, it is important to evaluate the current evidence for the effectiveness, tolerability, and safety of cannabinoids. The aim of this study is to evaluate the efficacy, tolerability, and safety of cannabinoids as an adjunct or complementary therapy in palliative medicine. Following the Grading of Recommendations Assessment, Development & Evaluation methodology, no recommendations can be made for the use of cannabinoids in PC treatment for cancer, HIV-AIDS, or dementia. In view of this finding, further research is urgently needed to identify the efficacy and safety of cannabinoids as adjunctive or complementary therapies and to provide evidence‐based recommendations on their clinical utility in PC. Full text: view source »

Cancer Council New South Wales – policy & advocacy: "I Care for Palliative Care" campaign to increase government investment in specialist palliative care services

JOURNAL OF GLOBAL ONCOLOGY | Online – 1 October 2018 – The campaign was developed and delivered between November 2015 and July 2017 in recognition of the fact that the state had fewer palliative care (PC) physicians and nurses than were needed to meet demand. This meant that some people with life-limiting cancer were being denied quality of life and were unable to die in the place of their choosing. Moreover, Aboriginal people remained disadvantaged by limited access to specialist PC that fits with their community values, beliefs, rituals, heritage and place. Various tactics were used, including collection and sharing of engaging community stories via media and online channels, mobilizing community support via training and events, and targeted engagement of decision-makers and members of parliament (MPs), which took into consideration marginal electorates, personal experiences with cancer, and geography, noting the issue disproportionally impacts regional and rural communities. An online and offline "pledge" activity was also used, providing the public and MPs with an opportunity to support the campaign. An independent qualitative evaluation confirmed that the campaign was undoubtedly a success. It noted that the campaign created an environment in which the New South Wales government made a historic decision to provide an additional $100 million in funding for PC services over four years. Without the campaign, PC could well have lost out to other healthcare and government spending priorities. Abstract: view source »

However, recent data suggest that the human lifespan probably has an unalterable biological limit of approximately 115 years and that virtually all humans will die before age 90 years. Advances in medical treatment – especially for cancer – are thus increasingly unlikely to provide substantial gains in healthy human longevity, and whatever increase in population lifespan was due to medical advances in the second half of the 20th century is unlikely to be replicated. As such, it is time to stop putting almost all of our resources into the search for life-extending therapies. Instead, we should shift our focus and investments toward identifying strategies that improve quality of life overall and compress illness at the end of life. Three arguments support this conclusion. Abstract: view source »

The doll is dead: Simulation in palliative care education

BMJ SUPPORTIVE & PALLIATIVE CARE | Online – 25 September 2018 – Both simulation and high-fidelity simulation involving manikins, clinical training suites, wards, computer programs and theatres have established themselves in medical undergraduate and postgraduate education. Popular among students, they have been shown to be effective learning tools. Contrasted with this is the potential risk to patients and their proxy associated with learning "at the bedside," which can pose a real challenge in medical and palliative settings. The need for education and training methods that do not expose the patient to preventable communication blunders from less experienced practitioners is a priority. The authors provide a summary review on the current literature and evidence for simulation and high-fidelity simulation in palliative and end-of-life care settings, and discuss potential uses of technologies including virtual and augmented reality in future training. Palliative medicine has been slow to adapt to an educational method and environment that now is widely used across other areas of healthcare. There has been less emphasis on training with manikins and even less on using computer simulation and virtual reality environments to recreate challenging end-of-life care scenarios. The authors provide some examples of where this could benefit the curriculum. Abstract: view source »

White Paper for Global Palliative Care Advocacy: Recommendations from a Pontifical Academy for Life Expert Advisory Group...

JOURNAL OF PALLIATIVE MEDICINE | Online – 27 September 2018 – Thirteen experts in palliative care (PC) advocacy participated in an online Delphi process. In four iterative rounds, participants were asked to identify the most significant stakeholder groups and then propose for each, strategic recommendations to advance PC. Each round incorporated the feedback from previous rounds until consensus was achieved on the most important recommendations. In a last step, the ad hoc group was asked to rank the stakeholders' groups by order of importance on a 13-point scale and to propose suggestions for implementation. A cluster analysis provided a classification of the stakeholders in different levels of importance for PC development. In summary, this White Paper emphasizes the responsibility of healthcare systems and stakeholders to recognize access to pain relief and PC as a basic right of the person and the family and the responsibility of all elements of the healthcare system. For this, it is necessary to recognize health as not only an absence of disease but also as physical, emotional, social, and spiritual well-being, which can be optimized only by making essential PC medicines available, governments integrating PC into their healthcare plans and universal health coverage, and developing public and professional education, as well as clear frameworks for implementing this care to prevent needless suffering. The support of faith-based and philanthropic organizations, non-governmental and governmental actors, and human rights organizations is needed to support PC integration. In short, a civil society response is needed. Full text: view source »

When professionals do not use a shared language about PC, offer toned-down language or avoid direct discussion about death and dying, they are not supporting their patients. Instead, they are encouraging misunderstanding and false hope which can be a major barrier to patient well-being and the uptake of supportive services. Successful communication in this context involves baring witness, supporting patients in their distress and discussing ways to optimise the life that they have yet to live. Although we already have checklists, guides and communication training, more engaged therapeutic approaches are needed, mindful of the very delicate space these communicative needs occupy. There is also a broader issue highlighted here, a total focus on disease negates the patients' experience of the illness. Having knowledge of how that illness experience is being lived is helpful for professionals to provide compassionate and patient centred care. Full text: view source »

Access to palliative care in Canada

INTERNATIONAL JOURNAL OF POPULATION DATA SCIENCE | Online – 6 September 2018 – The authors present the findings of a study on whether Canadian decedents had access to palliative care (PC) in the last year of life. Data from physician billings, drug claims, home care, long-term care and acute care were linked to identify decedents and PC service use. These data were also used to examine how PC may affect, or be affected by other interactions with the health system, including inpatient alternate level care days, admissions from long-term care, emergency department visits and stays in intensive care units. About 70% of decedents were identified using administrative health data, although there were variations across jurisdictions due to differences in data availability and quality (9%-81%). For decedents identified across care settings, few received PC in the community in their last year of life, ranging from 4% in long-term care to 12% in home care. More decedents were identified as palliative in acute care (44%) but only one-third received PC in another setting despite multiple interactions with the health system in the last year of life. Those who had integrated, community-based PC were less likely to have a stay in an intensive care unit, and more likely to die in the community. However, few Canadian decedents had access to this type of care. Abstract: view source » (185 KB)

Rethinking end-of-life care and palliative care: Learning from the illness trajectories and lived experiences of terminally ill patients and their family carers

QUALITATIVE HEALTH RESEARCH | Online – 20 September 2018 – Lynn conceptualized end-of-life care (EoLC) for patients with advanced chronic-progressive illnesses as a combination of life-preserving/ palliative care (PC), the palliative aspect gradually becoming the main focus as death approaches. The authors checked this concept by exploring the advanced-terminal illness trajectories of 50 patients. Strategies heralding active therapy exhaustion were the catalyst for a participant's awareness of terminality, but were not a decisive factor in the divergent EoLC pathways detected. The terms life-preserving and palliative do not adequately capture EoLC pathways due to their conceptual ambiguity. Conversely, the concept of EoLC encompassing three PC modalities (life-prolonging palliative therapy, restorative PC, and symptom-oriented [only] PC), each harboring a different blend of life-preserving and symptom-comforting aspects, proved adequate. These modalities could run serially, oscillatorily, or parallelly, explaining the divergent EoLC pathways. The authors suggest an adjustment of the model of Lynn and reconsider the traditional PC concept. Abstract: view source »

Then, conceptual models are provided to support team‐based, timely, and targeted PC. Team‐based PC allows the interdisciplinary members to address comprehensively the multidimensional care needs of patients and their caregivers. Timely PC, at its best, is preventive care to minimize crises at the end of life. Targeted PC involves identifying the patients most likely to benefit from specialist PC interventions, akin to the concept of targeted cancer therapies. Finally, the strengths and weaknesses of innovative care models, such as outpatient clinics, embedded clinics, nurse‐led PC, primary PC provided by oncology teams, and automatic referral, are summarized. Moving forward, more research is needed to determine how different health systems can best personalize PC to provide the right level of intervention, for the right patient, in the right setting, at the right time. Full text: view source »

Managing medicines for patients dying at home: A review of family caregivers' experiences

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 11 September 2018 – This review highlights a number of potential implications for practice alongside an underlying concern about whether family caregivers (FCGs) have any "choice," in practice, about whether or not they take on this caring role. There are a number of moral consequences for FCGs if they choose not to take on this role, and practical implications for services if FCGs do not want to, or are not able to, administer medications. Therefore, there is a broader question for policy and practice concerning whether we should continue to place this expectation on FCGs. Implications for practice, therefore, might be to take on effective training and ongoing support of FCGs alongside a greater emphasis on enabling health care professionals (HCPs) to effectively administer medication to people who want to remain at home, thereby reducing the expectations on FCGs. This review also demonstrates that when FCGs do want to take on a role of administering medications at the end of life (EoL) access to written and telephone information, and advice and home visits from HCPs, is essential for appropriate information and support. Further to this, medications management at the EoL may need to be simplified by health professionals actively rationalising all unnecessary medications. In addition to such practical issues discussions about the ethical implications FCGs may face and the potential to "debrief" with HCPs after medications have been given and/or the death has occurred may be required. Full text: view source »

Journal Watch

Beware of predatory journals: A caution from editors of three family medicine journals

JOURNAL OF THE AMERICAN BOARD OF FAMILY MEDICINE, 2018;31(5):671-676. We all share responsibility for addressing the threats of predatory publishing. Authors can avoid submitting work to such journals, even if promised sure acceptance and prompt publication. Readers can be vigilant when assessing the sources of published reports. Journal editors can check submitted manuscripts for duplicate publication, refuse to consider work already published in predatory journals, and carefully review article references before publication. Reviewers should be suspicious of requests from unfamiliar journals and refuse involvement with predatory journals and publishers. Professional organizations that sponsor journals can renew their commitments to quality, control, and access. Investigators can write grant budgets to include processing fees for publication in reputable journals. Academic institutions can restructure their criteria for academic advancement to favor quality over quantity of scholarly publications. What is at stake is the soundness of our science, the quality of our scholarly literature, and the public's trust in our work. Full text: view source »

Despite the soft groan of the bilevel positive airway pressure machine and the occasional chirps from four continuous intravenous drips, he seems settled, arms open, hands unfolded to the fluorescent overhead lighting. Even in this state of unconsciousness, he seems to be preparing to die. First page view: view source »

Navigating the intangible: Working with non-physical suffering on the front lines of palliative care

Omega – Journal of Death & Dying | Online – 5 September 2018 – While relieving suffering is palliative care's primary aim, how palliative care (PC) providers navigate patients' non-physical suffering in their day-to-day work and the impact of working with non-physical suffering on the clinician have been understudied. Results of this study revealed that PC clinicians face several challenges in their efforts to navigate patients' non-physical suffering in their day-to-day work, including: 1) The intangible nature of non-physical suffering; 2) Systemic barriers (e.g., lack of time and adequate resources); 3) Clinician helplessness or suffering; and, 4) A lack of education, training, and support for clinicians specific to their work with patients' non-physical suffering. Study outcomes have the potential to improve frontline clinical care with patients and support and education for clinicians. Abstract: view source »

In the lay press

Life in nursing homes and assisted living means waking to a neighbor's death

The Washington Post | Online – 3 September 2018 – Death and its companion, grief, have a profound presence in long-term-care (LTC) facilities. Residents may wake up one morning to find someone they saw every day in the dining room gone. Nursing aides may arrive at work to find an empty bed, occupied the day before by someone they'd helped for months. But the tides of emotion that ripple through these institutions are rarely acknowledged openly. "LTC administrators view death as something that might upset residents," said physician Toni Miles, a professor of epidemiology and biostatistics at the University of Georgia. "So when someone passes away, doors are closed and the body is wheeled discreetly out the back on a gurney. It's like that person never existed." Miles wants to see bereavement freely recognized to end what she calls "the silence surrounding loss and death in LTC." Fraught reactions to loss and death are common among nursing assistants and other staff members in LTC facilities, research shows.1 When feelings aren't acknowledged, grief can lead to a host of physical and psychological symptoms, including depression, distancing and burnout. view source »

System-level change and interdisciplinary approaches are also needed. Using task shifting as a guiding principle, the authors propose a new workforce framework (the Palliative care Redistribution Integrated System Model, or PRISM), which utilizes physician and non-physician providers and resources to their maximum potential. The authors highlight the central role of hospitalists in this model and provide examples of innovations in screening, workflow, quality, and bench-marking to enable hospitalists to be purveyors of quality PC. Abstract: view source »

Improving value of care for older adults with advanced medical illness and functional decline: Cost analyses of a home-based palliative care program

Journal of Pain & Symptom Management | Online – 27 August 2018 – This retrospective cohort study involved 50 participants enrolled in a palliative care (PC) home-bound program and 95 propensity-matched control patients at Mayo Clinic in Rochester, Minnesota, between 1 September 2012 and 31 March 2013. Total Medicare reimbursement was compared in the year before enrollment with the year after enrollment for participants and controls. No significant differences were observed in demographic characteristics or prognostic indices between the 2 groups. Total Medicare reimbursement per program participant the year before program enrollment was $16,429 compared with $14,427 per control patient, resulting in $2,004 higher charges per program patient. In 12 months following program enrollment, mean annual payment was $5,783 per patient among participants and $22,031 per patient among the matched controls. In the second year, the intervention group had a decrease of $10,646 per patient; the control group had an increase of $7,604 per patient. The difference in differences between the participant group and control group was statistically significant and favored the PC home-bound program enrollees by $18,251. Abstract: view source »

"Same same or different?" A review of reviews of person-centered and patient-centered care

Patient Education & Counseling | Online – 26 August 2018 – The authors' analysis resulted in nine themes present in person-centered as well as in patient-centered care: 1) Empathy; 2) Respect; 3) Engagement; 4) Relationship; 5) Communication; 6) Shared decision-making; 7) Holistic focus; 8) Individualized focus; and, 9) Coordinated care. The analysis also revealed that the goal of person-centered care is a meaningful life while the goal of patient-centered care is a functional life. While there are a number of similarities between the two concepts, the goals for person-centered and patient-centered care differ. The similarities are at the surface and there are important differences when the concepts are regarded in light of their different goals. Clarification of the the concepts may assist practitioners to develop the relevant aspects of care. Person-centered care broadens and extends the perspective of patient-centered care by considering the whole life of the patient. Abstract: view source »

In my conversations with researchers who wish to analyse SM trends in medicine, there is often mention of ethics and research committees baffled by SM proposals and how such research should be properly conducted. It is worth exploring the many potential uses. When I speak to prospective researchers, I am often asked how they might use SM to inform research. As a starting point, I generally tell them that the first part to a dissertation or any other research project is to define the exact research question from the outset. If they struggle to define that question, or if they fear it has already been asked elsewhere, and comprehensively answered, then SM can be a great pointer… Introductory paragraphs: view source »

Patient, caregiver and taxpayer knowledge of palliative care and views on a model of community-based palliative care

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 24 August 2018 – Across 10 interviews and 4 focus groups ... there was varying knowledge of palliative care (PC). Gaps in interview and focus group participants' knowledge related to knowing the services available in PC, how PC is paid for, how to initiate PC, and how PC effects the patient's relationship with existing providers. Regarding the model, negative feedback from interview participants included not having PC explained adequately and PC providers seen as consultants, not full-time providers. Focus group participants indicated the model sounded promising, but noted the likely difficulty in enacting it in our current healthcare system. Positive feedback from interview participants included the perception that clinicians spent more time and provided more support for patients and families, and the developing ability of PC services to provide care more broadly than at the very end of life. Focus group participants had similar observations related to perceived attention to care and broader application of PC. Perceptions of time-constrained care delivery and sub-optimal provider-patient communication persist for some patients getting PC services. Abstract (w. link to list of references): view source »

How we should assess the delivery of end-of-life care in general practice? A systematic review

JOURNAL OF PALLIATIVE MEDICINE | Online – 21 August 2018 – The majority of end-of-life care (EoLC) care occurs in general practice. However, we still have little knowledge about how this care is delivered or how it can be assessed and supported. A total of 43 studies representing nine evaluation tools were included. A relatively restricted focus and lack of validation were common limitations. Key general practitioner (GP) activities assessed by the evaluation tools were summarized and the main issues in current GP EoLC practice were identified. The review of evaluation tools revealed that GPs are highly involved in management of patients at the end of life, but there are a range of issues relating to the delivery of care. An EoLC registration system integrated with electronic health records could provide an optimal approach to address the concerns about recall bias and time demands in retrospective analyses. Such a system should ideally capture the core GP activities and any major issues in care provision on a case-by-case basis. Abstract: view source »

The law additionally exempts eligible investigational drugs provided to eligible patients from compliance with other FDA requirements for investigational use, such as strict standards for informed consent and adverse event reporting, but does mandate compliance with provisions regarding investigational labeling and restrictions on promoting and charging for investigational products. Further, the Right-to-Try Act grants various expansive immunities from liability not applicable to clinical trial participation or Expanded Access. As described by its primary Congressional sponsor, the law "intends to diminish the FDA's power over people's lives." The recommendations suggested here are not intended to render Right-to-Try indistinguishable from Expanded Access; it is clear that lawmakers intended to create a new, distinct pathway. Instead, these recommendations may help prevent the rise of a market in unproven therapies and preserve the ability to collect critical information about investigational drugs, while enabling access as the law intended (but did not guarantee). Additionally, these recommendations are not intended to be exhaustive. For example, rigorously monitoring and enforcing the statutory requirement that manufacturers may charge only for the direct costs of their drugs under Right-to-Try also may help to deter those who would seek to exploit vulnerable patients. Full text: view source »

How do expatriate health workers cope with needs to provide palliative care in humanitarian emergency assistance? A qualitative study with in-depth interviews

PALLIATIVE MEDICINE | Online – 16 August 2016 – Given the worldwide increase of chronic diseases, expatriate health workers on assignment with humanitarian emergency organisations can face more clinical situations that require advanced pain control or palliative care (PC). Multiple reasons can prevent the provision of this care. Fifteen expatriate health workers took part in individual in-depth interviews after their assignment with the organisation Médecins sans Frontières. Clinical situations requiring advanced pain control or PC do occur during assignments. Expatriate health workers have different levels of knowledge of pain control and PC. Lacking opioids were a main reason for inadequate pain control. The expatriates felt helpless, distressed and frustrated in such situations. Peer support was sometimes helpful. Guidelines for PC in emergency settings would have been useful. Humanitarian organisations should strengthen their capacity to provide pain control and PC by developing and applying adapted guidelines. Abstract: view source »

Overall, 43.4% of clinicians screened positive for burnout syndrome, 7.8% screened positive for depression, and 35.5% reported thoughts of leaving their job as a result of futile/PIC. A large majority of clinicians [i.e., survey respondents] report providing futile/PIC, and such care is associated with measures of clinician well-being, including burnout and intention to quit. Abstract: view source »

Use of palliative care earlier in the disease course in the context of the opioid epidemic: Educational, research, and policy issues

JOURNAL OF THE AMERICAN MEDICAL ASSOCIATION | Online – 9 August 2018 – Historically, the majority of patients seen by palliative care (PC) specialists have been near the end of life, and the field of PC has emphasized the efficacy of opioids for alleviating pain in this context. Likewise, much of hospice and palliative medicine training focuses on the inpatient setting, and clinicians trained in this tradition are often most comfortable treating hospitalized patients with pain due to advanced cancer and other life-limiting illnesses. However, in some settings PC is now recommended earlier in the disease course. For example, recent guidelines from the American Society of Clinical Oncology recommend that patients with advanced cancer receive dedicated PC services within 8 weeks of diagnosis. Modern definitions of PC focus on improving quality of life for patients and their families at any stage of serious illness, and many PC programs are expanding to provide care outside the hospital. A survey of PC in California found that the number of community-based PC programs delivering care in clinics or patient residences doubled from 189 in 2014 to 380 in 2017. Because of this rapid increase, PC clinicians are increasingly treating patients who not only have serious illnesses that are accompanied by moderate or severe pain, but also may have longer life expectancies, ill-defined illness trajectories, and risk factors for opioid misuse, including concomitant mood and substance use disorders. At the same time, the U.S. is in the midst of a national epidemic of opioid use disorder and overdose, driven in some part by an increase in opioid prescribing. Among 42,249 opioid related deaths in the U.S. in 2016, 17,087 involved prescription opioids. The opioid crisis has not spared patients with serious illness. Full text: view source »

Ethical, palliative, and policy considerations in disorders of consciousness

NEUROLOGY | Online – 8 August 2018 – This essay complements the scientific and practice scope of the 'American Academy of Neurology Guideline on Disorders of Consciousness' by providing a discussion of the ethical, palliative, and policy aspects of the management of this group of patients. The authors endorse the renaming of "permanent" vegetative state to "chronic" vegetative state given the increased frequency of reports of late improvements, but suggest that further refinement of this class of patients is necessary to distinguish late recoveries from patients who were misdiagnosed or in cognitive-motor dissociation. Additional nosologic clarity and prognostic refinement is necessary to preclude overestimation of low probability events. They argue that the new descriptor "unaware wakefulness syndrome" is no clearer than "vegetative state" in expressing the mismatch between apparent behavioral unawareness when patients have covert consciousness or cognitive motor dissociation. The authors advocate routine universal pain precautions as an important element of neuropalliative care for these patients given the risk of covert consciousness. In medical decision-making, they endorse the use of advance directives and the importance of clear and understandable communication with surrogates. They show the value of incorporating a learning health care system so as to promote therapeutic innovation. Abstract: view source »

Which parts of dying, if any, should be medicalized and why? What do patients and clinicians need to know about dying and why? This issue of the journal explores these and other questions. Contents page: view source »

State of advance care planning research: A descriptive overview of systematic reviews

PALLIATIVE & SUPPORTIVE CARE | Online – 30 July 2018 – Eighty systematic reviews, covering 1,662 single articles, show that advance care planning (ACP) related research focuses on nine main topics: 1) ACP as part of end-of-life or palliative care interventions; 2) Care decision-making; 3) Communication strategies; 4) Factors influencing ACP implementation; 5) ACP for specific patient groups; 6) ACP effectiveness; 7) ACP experiences; 8) ACP cost; and, 9) ACP outcome measures. The majority of this research was published since 2014, its quality ranges from moderate to low, and reports on documentation, concordance, preferences, and resource utilization outcomes. Despite the surge of ACP research, there are major knowledge gaps about ACP initiation, timeliness, optimal content, and impact because of the low quality and fragmentation of the available evidence. Research has mostly focused on discrete aspects within ACP instead of using a holistic evaluative approach that takes into account its intricate working mechanisms, the effects of systems and contexts, and the impacts on multilevel stakeholders. Higher quality studies and innovative interventions are needed to develop effective ACP programs and address research gaps. Abstract (inc. list of references): view source »

In the lay press:
U.K. Supreme Court backs agreed end-of-life decisions

U.K. (England, Northern Ireland, Scotland & Wales) | BBC News (London) – 30 July 2018 – Legal permission will no longer be required to end care for patients in a long-term permanent vegetative state, the Supreme Court has ruled. It will now be easier to withdraw food and liquid to allow such patients to die. When families and doctors are in agreement, medical staff will be able to remove feeding tubes without applying to the Court of Protection. [Justice] Lady Black ruled there was no violation under the Human Rights Convention. The Court of Protection has ruled on cases for 25 years, but the process can take months or years, and it costs health authorities about £50,000 in legal fees to lodge an appeal. The ruling could have an impact on the thousands of families whose loved ones are in a vegetative state. It is estimated about 24,000 people in the U.K. are in a persistent vegetative state or a minimally conscious state. In the Supreme Court judgement, Lady Black said an agreement between families and doctors was sufficient safeguarding to ensure "public confidence." But she urged families to apply to court "where there are differences of view" between relatives or medical professionals. view source »

Prior to the judgement the most frequently documented reason for not discussing was to avoid distress (23%), whereas after judgement it was patients lacking capacity to engage in such a discussion (40%). There was a lack of consistency and clarity in defining the concept of "physical or psychological harm." Future research must examine whether the judgement is delaying or preventing DNACPR decisions being made. Abstract: view source »

A systematic review of the use of the electronic health record for patient identification, communication, and clinical support in palliative care

JAMIA OPEN | Online – 6 July 2018 – The results of the studies presented in this system review contributed to the relevant understanding of the importance of early patient identification for palliative care (PC), patient reporting, PC summaries, advance care planning (ACP), communication, and electronic health record (EHR) enhancement for PC. The variation of methodology used in these studies resulted in one common and consistent theme, which is the EHR has yet to be optimized for its potential contributions to PC. Nevertheless, recent approaches of clinical decision support (CDS) and patient-reported outcome measures (PROMs) demonstrated the EHR can be used to facilitate PC and to potentially result in improved PC, as well as a better quality of life for patients and their families. Patient-reported outcomes, such as pain levels and discomfort benefit the care team, helping to change treatment course and improve patient comfort. Further studies of the role of CDS and PROMs to identify appropriate patients, establish care goals earlier in their illness as well as the potential to reduce provider discomfort when introducing the topics of PC, ACP, death, and dying are needed. Earlier and more effective PC identification can also help providers, patients, and families to discuss end-of-life (EoL) options to match with the best type of care according to patient goals and EoL stage, improving comfort care and allowing provider to focus on offering the best intervention. Full text: view source »

Should emergency department patients with end-of-life directives be admitted to the ICU?

JOURNAL OF EMERGENCY MEDICINE | Online – 24 July 2018 – The authors discuss the interplay between clinical indications, patient preferences, and advance care directives, and make recommendations about what the emergency physician must consider when deciding whether a patient with an advance care planning document should be admitted to the ICU. Although some patients may wish to avoid certain aggressive or invasive measures available in an ICU, there may be a tendency, reinforced by recent Society of Critical Care Medicine guidelines, to presume that such patients will not benefit as much as other patients from the specialized care of the ICU. The ICU still may be the most appropriate setting for hospitalization to access care outside of the limitations set forward in those end-of-life care (EoL) directives. On the other hand, ICU beds are a scarce and expensive resource that may offer aggressive treatments that can inflict suffering onto patients unlikely to benefit from them. Goals-of-care (GoC) discussions are critical to align patient EoL preferences with hospital resources, and therefore, the appropriateness of ICU disposition. EoL care directives should not automatically exclude patients from the ICU. Rather, ICU admission should be based upon the alignment of uniquely beneficial treatment offered by the ICU and patients' values and stated GoC. Abstract (w. link to references): view source »

Yet both dimensions of the story are flawed because the savings from altering EoLC are more modest than conventional wisdom suggests, and many people actually prefer lower-cost, at-home options to dying in a hospital. First, on the potential for cost savings, historical figures showed that more than 25% of total Medicare expenditures occurred in the last year of a beneficiary's life. That suggested significant opportunity to wring out costs from the care delivered near the end of life. The share of Medicare spending on those at the end of their lives has, however, declined somewhat over time. More importantly...about 5% of Medicare beneficiaries die each year, compared with about 1% of the total population. As a result, EoLC represents a smaller share of total health-care spending than of Medicare spending. Indeed, the most recent estimates suggest that less than 9% of total U.S. health-care spending occurs in the final year of life. And that share is actually lower than in many other developed countries. A new study points to an even more challenging issue: We have little idea who is on the verge of death, so knowing after the fact that a certain amount of spending occurred in the last year of life doesn't provide much insight to practitioners or policy makers. view source »

Demystification of palliative care: What palliative care teams don't want you to think about them

MEMO – MAGAZINE OF EUROPEAN MEDICAL ONCOLOGY | Online – 17 July 2018 – There is robust data that palliative care (PC) is prolonging life while there are still prejudices towards this discipline that have to be demystified. Patients, relatives and caregivers benefit from the concept of early integration of PC and therefore, PC should not be mainly regarded as end-of-life care. The primary goal of PC is to consider the individual priorities and values of patients through specialized, interdisciplinary care and communication . The "pallium" stands as a synonym for a coat in which the patients can slip into and that consists of individual, medical and psychosocial care, as well as spiritual care. This multi-modal treatment should help patients and their relatives to gain a better understanding of the disease, its prognosis and possible treatment options. PC should not be understood as a discontinuation of therapy, but more as a change in therapy goals. Although there are many non-malignant, chronic palliative disorders, the majority of patients receiving PC suffer from advanced oncological diseases. There are still prejudices against the concept of PC that can be mitigated by well-published scientific studies. The authors of this article report upon some common myths towards PC: 1) PC only deals with dying; 2) PC mainly deals with talking; and, 3) PC is demoralizing. Full text: view source »

In the Canadian lay press:

In an era of assisted death, we need palliative care more than ever

ONTARIO | The Ottawa Citizen – 16 July 2018 – Based on recent news reports, there is a strong, arguable case that, only two years after federal assisted dying legislation was passed, the lack of palliative care (PC) is influencing people to choose assisted death when they would have chosen PC had it been available. If we allow the most vulnerable among us to choose assisted death because they lack PC, what kind of society will we have built? What kind of people will our children say we were? What about compassion and love by accompaniment on the journey towards a chosen natural death? We need to give people the option of strong PC so that they can choose to live until their last dying breath, instead of taking their last dying breath while living. view source »

Extract from The Ottawa Citizen article

Of those who have already died by assisted death, did they opt for assisted death to relieve them of the shame they felt at seeing themselves as a burden to others, i.e., "shame relief"? This information should be publicly available; otherwise how will we ever know if the absence of palliative care was an overriding and undue influence?

Sixty-three percent had more than 20 years of experience as a registered nurse yet were newer to practice as a hospice and PC advanced practice nurse, with 53.8% having 0 to 5 years of experience in this role. Forty-one percent indicated that their traditional graduate educational preparation was insufficient in preparing them for their specialty role. Most indicated that they did not experience barriers to practice in their current position, but 7.3% identified significant issues. These results can inform future professional, educational, and regulatory efforts to support and develop the PC advanced practice registered nurse workforce. Abstract: view source »

How do experienced professors teach palliative medicine in European universities? A cross-case analysis of eight undergraduate educational programs

JOURNAL OF PALLIATIVE MEDICINE | Online – 9 July 2018 – In Europe in recent decades, university teaching of palliative medicine (PM) has evolved. In some countries it has been introduced as a compulsory subject in all medical schools, but in a majority of countries it remains an isolated subject at few universities. An intentional sample of eight university professors from Spain, France, U.K., Italy, Hungary, Sweden, Germany, and Poland was chosen. The introduction of PM in the universities depends on the existence of a favorable social and political context in relation to palliative care and the initiative of pioneers, trusted by students, to push this education forward. A PM curriculum frequently starts as an optional subject and becomes mandatory in a short period. In the reported universities, PM uses a wide variety of teaching methods, such as lectures, workshops, role-plays, and discussions. PM assessment included tests, discussions, reflections, portfolios, and research works. According to respondents' opinions, lack of recognition, funding, and accredited teachers, along with competition from other curricula, are the main barriers for PM teaching development at universities. The described cases may shed light on other medical schools to develop PM curricula. Abstract: view source »

Content validity of a conceptual model of a palliative approach

JOURNAL OF PALLIATIVE MEDICINE | Online – 9 July 2018 – The term "palliative approach" has emerged to connote healthcare activities provided consistent with the philosophy of palliative care (PC), but not limited to specialized care providers or settings. A rigorous understanding of the palliative approach requires a conceptual model, which links the philosophy of PC to specific actions of practitioners, and is applicable to patients with any life-threatening illness, at any point on the disease trajectory, and provided by any care provider in any setting. The authors propose a conceptual model asserting that a palliative approach exists when care simultaneously addresses whole-person needs, enhances quality of life, and acknowledges mortality. Nineteen definitions are identified [in a literature search]. The three domains were represented in the majority: 1) Whole-person care (17/19); 2) Quality-of-life focus (17/19); and, 3) Mortality acknowledgement (15/19). Published definitions also included other concepts, but only one of these (family within the unit of care) appeared in more than a few definitions. The proposed conceptual model bridges philosophical definitions and clinician behavior and has potential to inform broad implementation of a palliative approach, at both clinic and system levels. Abstract: view source »

Despite the acknowledged organisational pressures, the interviews with the patients in this study highlight the importance of concepts such as kindness, compassion and dignity; taking the time to "care for patients" rather than time to "do to patients," taking the time to listen to what is most important and taking the time to respond to the patient as an individual. When the patients' voice is heard and healthcare professionals "see the person behind the name" rather than the illness, this provides opportunities for relationships to be built based on trust, confidence and mutual respect. This ultimately impacts on the patients' experience of care, and their perception of self-worth and identity and sense of dignity. The palliative nature of illness reinforced the "preciousness" of time, underlining there is "one chance to get it right." Full text: view source »

How might organisational institutionalism support the challenges of the modern hospice?

INTERNATIONAL JOURNAL OF HEALTH PLANNING & MANAGEMENT | Online – 28 June 2018 – The external environment within which U.K. charitable hospice care operates is changing. More people are dying with conditions other than cancer; however, this disease still dominates modern hospice care. Organisational institutionalism offers a theoretical lens through which to consider the challenges facing the hospice movement. Concepts such as legitimacy, decoupling, deinstitutionalisation, and reinstitutionalisation can help hospice leaders understand the challenges of change and some of the strategies that can be employed at local and national levels. The authors outline a number of environmental and influencing factors driving and impacting change. A model of institutional change is introduced, explored, and considered from the context of hospice. When it comes to understanding change, legitimacy is a major concept introduced to challenge and pose questions for hospices to address. The authors propose a model demonstrating a perspective regarding the current structure of services within hospice organisations. Summary: view source »

Responding to urgency of need: Initial qualitative stage in the development of a triage tool for use in palliative care services

PALLIATIVE MEDICINE, 2018;32(7):1246-1254. Palliative care (PC) services face the challenge of a workload increasing in volume and diversity. An evidence-based triage method to assess urgency of PC needs is required to ensure equitable, efficient and transparent allocation of specialist resources when managing waiting lists. Twenty PC providers were purposively sampled to ensure representation across disciplines (primary, specialist; medicine, nursing and allied health), service types (inpatient, hospital liaison and community) and locations (metropolitan and rural). A series of markers of urgency were identified, including physical and psychological suffering, caregiver distress, discrepancy between care needs and care arrangements, mismatch between current site of care and desired site of death when in terminal phase and complex communication needs. Performance status and phase of disease were reported to be less informative when considered in isolation. Interpersonal and system-based barriers to the implementation of a PC triage tool were highlighted. Abstract: view source »

Based on these results, the authors developed a consensus list of adequate, questionable, and inadequate drugs for older adults near the end of life (EoL). The expert panel reached consensus on a set of 14 drug classes deemed as "often adequate," 28 drug classes deemed "questionable," and 10 drug classes deemed "often inadequate" for continuation during the last 3 months of life. Regarding the initiation of new drug treatments, the panel reached consensus on a set of 10 drug classes deemed "often adequate," 23 drug classes deemed "questionable," and 23 drug classes deemed "often inadequate." Consensus remained unachieved for some very commonly prescribed drug treatments (e.g., proton-pump inhibitors, furosemide, haloperidol, olanzapine, zopiclone, and selective serotonin reuptake inhibitors). In the absence of high-quality evidence from randomized clinical trials, these consensus-based criteria provide guidance to rationalize drug prescribing for older adults near the EoL. Full text: view source »

Using simulation modelling to test the impact of future demand for end-of-life care

HEALTHCARE MANAGEMENT FORUM | Online – 28 June 2018 – Health systems globally are exploring new models of care to address the increasing demand for palliative, hospice and end-of-life care (EoLC). Yet few tools exist, however, at the population level to explore "what if" scenarios and test, in a "cost avoidance environment," the impact of these new care models on policy, workforce, technology, and funding. This article introduces the application of scenario-based "what if" thinking and discrete event simulation in strategic planning for a not-for-profit hospice organization. The authors describe how a set of conceptual models was designed to frame discussions between strategic partners about the implications and alternatives in implementing a new, integrated service model for palliative and EoLC. Abstract: view source »

Re-framing global palliative care advocacy for the sustainable development goal era: A qualitative study of the views of international palliative care experts

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 25 June 2018 – The World Health Assembly Palliative Care Resolution in 2014 and the inclusion of palliative care (PC) within the Sustainable Development Goals raised optimism that PC would no longer be a peripheral aspect of global health. However, no funding, accountability measures or indicators for PC development accompanied these policy developments. This risks health actors continuing to prioritize the attainment of better known, target-driven aspects of healthcare. Sixteen international PC experts were interviewed for their epistemic expertise. Participants were interviewed face-to-face or via Skype. Participants strongly supported the roll-out of national PC policies around the world for two reasons: 1) To ensure PC attracts national funding streams; and, 2) To attract global funding for PC. The absence of a global indicator for PC development was considered a severe impediment to the inclusion of PC within global efforts towards universal health care. Advocacy partnerships, using human rights approaches with economic "frames," were considered the most effective methods of influencing policymakers. PC represents a value proposition which is not currently being maximized by advocacy. Advocates should consider PC developmentally, focusing upon "key asks" for development and consider how PC can contribute to other international development priorities, in particular poverty reduction. Abstract: view source »

An exception is made for patients enrolled in hospice for a different diagnosis for which kidney failure is not thought to be contributing to the 6-month prognosis. In this circumstance, the Medicare beneficiary is eligible for both the Medicare Hospice Benefit and the Medicare end-stage renal disease (ESRD) Benefit to reimburse hospice services and dialysis care, respectively. Patients with ESRD carry a tremendous burden of symptoms and high mortality, but usually die without the benefit of symptom, psychological, and planning support of hospice services. A change in policies governing hospice programs is needed for the lives of patients with kidney failure to end better. Full text: view source »

Do medical students expect palliative care will be satisfying?

BMJ SUPPORTIVE & PALLIATIVE CARE | Online – Accessed 19 June 2018 – During their careers, all doctors will be involved in the care of the dying, and this is likely to increase with current demographic trends. Future doctors need to be well-prepared for this. Little is known about medical students' expectations about providing palliative care (PC). Fifteen U.K. medical schools participated in this study, with 1,898 first and final year students completing an online questionnaire which investigated how satisfying they expect providing PC to be and their attitudes towards PC. At both the beginning and end of their training, a significant proportion of students expect PC to be less satisfying than other care (19.3% first year, 16% final year). Students expecting PC to be less satisfying were more likely to be men, and their attitudes suggest that while they understand the importance of providing PC they are concerned about the potential impact of this kind of work on them personally. Medical student education needs to address not only why PC is important and how to deliver it effectively, but also strategies for dealing positively with the impact of this work on future clinicians. Abstract: view source »

Advance decisions to refuse treatment: What GPs need to know

GP | Online – 19 June 2018 – Since the introduction [in England & Wales] of the Mental Capacity Act 2005 the concept of a living will or advanced directive (AD) has been replaced by an advance decision to refuse treatment. This allows a person to state that a particular treatment should not be carried out or continued if, at a later time and in specified circumstances, the patient lacks capacity to make that decision for themselves. Any AD that was made prior to the Mental Capacity Act coming into force may still be valid under the Act, but no new directives can be made following its introduction. Patients wishing to set out what care they would want, or not want, to receive in the future, will need to make an advance decision. Advance decisions can only be made by a person aged 18 or older and the patient must have the appropriate mental capacity. If you are asked by a patient to assist them in preparing such a decision, you must have assessed capacity and be satisfied the patient has the necessary ability to make the decision. However, the patient must also understand the limitations of any decision they make. Under the advance decision, treatment can be refused except for actions needed to keep a patient comfortable, such as offering food or water by mouth and providing warmth and shelter. A patient can refuse life-sustaining treatment providing this is in writing and signed by them and a witness, whereas other refusals can be made verbally. Full text: view source »

He asks the question whether religious belief can justify providing treatment that has either no or a small chance of restoring meaningful function. The author concludes that non-beneficial therapy by its very definition cannot be helpful, and indeed is often harmful, to patients and hence cannot be justified no matter what the source or kind of reasons used to support its use. Therefore, doctors may legitimately refuse to provide such treatments, so long as they do so for acceptable clinical reasons. Abstract (inc. list of references): view source »

Palliative care: Who is responsible?

JOURNAL OF THE NATIONAL COMPREHENSIVE CANCER NETWORK, 2018;16(6): 791-792. In a time when medicine has been fairly criticized as producing too many subspecialists, a positive movement toward multidisciplinary care teams has begun. Oncology programs are no exception. Although many cancer centers have dedicated teams based on the primary cancer, individual members within these teams represent multiple disciplines. For example, at minimum, a head and neck cancer team should include a medical oncologist, radiation oncologist, surgical oncologist, nurse, dietitian, speech language pathologist, and social worker. For patients with advanced cancer, multiple randomized studies have shown that early palliative care (PC) improves patient quality of life, and in some instances quantity of life. Therefore, an oncology program is not complete without PC. Feldstain et al skillfully demonstrate not only the statistical but also the clinical benefits of interdisciplinary specialist PC in reducing symptom burden and detecting distress in patients with high intensity scores.¹ Their team consistently used two validated tools at patient encounters: the Edmonton Symptom Assessment System (ESAS) and the Canadian Problem Checklist (CPC). The ESAS is a questionnaire that asks patients to rate the severity of 9 common symptoms – pain, fatigue, tiredness, nausea, appetite, shortness of breath, depression, anxiety, and well-being – on a visual analogue scale ranging from 0 to 10. The CPC is a checklist of the most commonly reported problems, divided into the following domains of functioning: physical, emotional, social/family, spiritual, informational, and practical, although the version used by Feldstain and colleagues also included mobility. Full text: view source »

Open access journals and predatory publishing in palliative care

MEDICINA PALIATIVA, 2018;25(3):184-190. The authors found 32 open access journals in the field of palliative care (PC) with full or partial open access option; three of them were not active. The median original publication fee was 1,389€. Globally, three types of journal could be distinguished: 9 journals of recognized publishers, indexed and even with impact factor, that allow the possibility of publishing with open access; 7 open access scholarly journals, some indexed and with impact factor, that only publish open access, and 16 suspected predatory journals. The authors found an association between the presence of the journal on Beall's list and some suspicion criteria for predatory publishing such as: absence of impact factor or PubMed indexation; no Open Access Scholarly Publishers Association registration; e-mails requesting works; option of payment per time period; and flexibility in payment according to type of article. Abstract: view source »

1. 'Outcomes from a patient-centered, interprofessional, palliative consult team in oncology,' Journal of the National Comprehensive Cancer Network, 2018;16(6):719-726. Abstract: view source »

It is merely the case that each has a different emphasis. Some of the values, norms and principles that we find in the forefront of curative medical practices do not receive the same emphasis in palliative contexts. There is then, a certain degree of commonality between palliative and curative medicine, as a result there should be room for an appreciation of the shared aspects of their respective ethos. Nevertheless, one should acknowledge that PC is a subaltern medical culture. Whilst this may cause it to be somewhat neglected, or to be relegated to "Cinderella" status, this does provide its practitioners with opportunity for moral, ethical and educational leaderships. Particularly in the context of an aging population, and increasing levels of chronic, and often terminal, illnesses amongst that population, it is becoming increasingly clear that what PC has to offer is what many patients require. Furthermore, at its best, PC can both improve patient's quality of life and its quantity or length. Whilst any number of editorials and OpEd pieces can state these claims, the best proof is to be found by demonstrating the benefits of PC; displaying the contribution PC can make to patients is the best route to being involved in the orchestration of treatment more generally. Over the past few decades PC has established itself as a legitimate medical speciality. The challenge it now faces is to maintain this status whilst also become embedded in, or available to, medical practice more generally. One route to meeting this challenge is through providing the moral, ethical and educational leadership considered above. Full text: view source »

False hope with the Right to Try Act

THE LANCET, 2018;391(10137:2296. Critics – including the American Cancer Society and the American Society of Clinical Oncology, among many others – contend that right-to-try laws add little benefit over the existing Food & Drug administration (FDA) "expanded access/compassionate use" programme (active since the 1970s) that allows applicants to be granted access to experimental drugs and approves applications at a rate greater than 99%. The law also lowers the bar from terminal illness to "a life-threatening illness or condition." Diabetes and heart disease are both life-threatening, but do they justify access to unproven, perhaps harmful or even deadly, experimental drugs? Scott Gottlieb, Trump's FDA commissioner, criticised that change, and it is unclear how the FDA will interpret the new law. Republican Senator Ron Johnson, author of the law, has said bluntly that it is intended to weaken the FDA. Pharmaceutical companies decide who gets access to experimental drugs, and it is not clear the new law would make them any more inclined to accede. The new law offers little benefit in marshalling new drugs through the FDA's approval process. Patients given access to the drugs will be outside randomised controlled trials (RCT). Their data will not advance approval, and any adverse effects they might suffer could potentially damage a drug's approval chances. Patients might also intentionally try to circumvent the RCT system entirely, due to fears of receiving a placebo. The Right to Try Act removes a barely existent barrier. It is a political gesture, aimed at diminishing the power of the FDA over drug regulation, and intended to force critics to appear to stand between the dying and hope. The changes it offers will do little to help, and might do an unknowable amount of harm. Full text: view source »

The omission of discussion and learning objectives related specifically to aged care is deeply unfortunate for a PC training document. PC is not solely terminal cancer care. The clinical and policy demands for a broader involvement in ageing-related disease such as neurological disorders, organ failure, dementia, and even frailty have been debated and argued for over a decade now. The exponential rise in demographic ageing trends makes this attention even more urgent. Collaboration with gerontology can only strengthen the relevance and value of future PC learning and practice. Second, it will be important to consult the established academic literature on health-promoting PC and to closely examine the existing PC policy documents for their stipulations and recommendations for social forms of support and care. Leadership and partnership are crucial new roles for palliative medicine in an age of the "new" PH. Psychosocial approaches to care affirm the dominant direct service culture of palliative medicine and fail to direct attention to the crucial partnership challenges of working with community. These limits to psychosocial care are invitations to a greater understanding of health promotion and community development. Finally, PH insights must be applied understandings for PC and not solely abstract epidemiological information bereft of practice guidance. Full text: view source »

End-of-life decision making by family caregivers of persons with advanced dementia: A literature review of decision aids

SAGE OPEN MEDICINE | Online – 21 May 2018 – Few decision aids exist for caregivers' end of life (EoL) decision making for persons with dementia. Existing studies lacked a focus on caregivers' preferences for different types and amounts of information necessary to ensure decision making consistent with patients' values. Advance care planning (ACP) for persons with dementia is a major challenge for caregivers. Ideally, the demands of an advance directive or any kind of ACP would have been discussed with the person with dementia while he or she was still able to express such wishes. Yet, this is often not the case. Developers of decision aids should strive to find ways to incorporate values and preferences in decision making. None of the studies[reviewed] mentioned any tailoring or acknowledged the need for specific tailoring of information to the individual situations of patients or caregivers. Important variables for tailoring such as values and information preferences were typically not assessed before or during the implementation of decision aids. While recent technological developments enable great tailoring of information, existing decision aids have largely underutilized such tailoring potential. Existing studies involved samples predominantly of non-Hispanic Caucasians. Since EoL decision making is culturally sensitive, future research should place special emphasis on ethnically and racially diverse samples and develop tailored and interactive decision aids for underrepresented groups. Full text: view source »

In the lay press:

We spend generously to extend lives of people with terminal illnesses – against the public's wishes

U.K. (England, Scotland & Wales) | The Conversation – 31 May 2018 – When deciding which treatments publicly funded healthcare systems should provide, medicines that extend terminally ill patients' lives are among the most hotly debated – particularly for advanced cancer. The National Health Service spent an estimated £17 billion on medicines in England in 2016-2017, roughly 13% of its budget. This was up from £13 billion in 2010-2011, with the medicine bill currently increasing at over 5% a year as new drugs get ever more expensive. Underlying this is a controversy many people probably aren't aware of. The relevant authorities – the National Institute for Health & Care Excellence in England & Wales, and the Scottish Medicines Consortium – take a more generous approach to approving end of life (EoL) drugs than all other drugs. Yet according to research, most people are not in favour. Previous studies show mixed results on public values in this context... This much is clear: there is a gap between what the public thinks and the official approach to EoL medicines. view source »

Proxies reported more centenarian EoL planning than centenarians themselves. Even though enrolled proxies were mostly persons very close to the centenarian, many of them did not seem to be well informed about the centenarians' thoughts and plans regarding the EoL, suggesting a lack of communication between centenarians and social network members in this respect. Healthcare professionals should be aware that, even for very old adults approaching the end of their lives, discussions about EoL and EoL planning may need to be actively encouraged and supported. Abstracts: view source »

Language used by health care professionals to describe dying at an acute care hospital

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 22 May 2018 – The authors conducted a retrospective chart review of the final admission of 150 patients who died on an inpatient internal medicine unit. Conventional and summative content analysis was performed of the language used to describe, either directly or indirectly, that the patient's death was imminent. A total of 45% of 150 deaths were from cancer, and 66% occurred with prior palliative care (PC) team involvement. There was no documentation of the dying process in 18 (12%) of charts. In the remainder, clinicians' documentation of imminent death fell into three categories: 1) Identification of the current state using specific labels, e.g., "dying" (24.7%), or "end of life" (15.3%), or less specific language, "unwell" or "doing poorly" (6.0%); 2) Predicting the future state using specific or more vague predictions: e.g., "hours to days" (7.3%) or "poor or guarded prognosis" (26.0%); 3) Using care provided to the patient to imply patient status: e.g., PC (49.3%) or comfort care (28.7%). PC involvement, but not a malignant diagnosis, was associated with more frequent use of specific language to describe the current or future state. Death and dying in hospital is inadequately documented and is often described using unclear and vague language. PC involvement is associated with clearer language to describe this process. Abstract (w. link to references): view source »

The colours and contours of compassion: A systematic review of the perspectives of compassion among ethnically diverse patients and healthcare providers

PLOS ONE | Online – 17 May 2018 – Synthesis of the literature identified the perspectives, facilitators and barriers of compassion in healthcare within different ethnic groups. Compassion was described as being comprised of healthcare provider virtues (honesty, kindness, helpful, non-judgment) and actions (smile, touch, care, support, flexibility) aimed at relieving the suffering of patients. The importance and impact of providing compassion to ethnically diverse patients was also identified which included overcoming cultural differences, alleviating distress at end-of-life, promoting patient dignity and improving patient care. This review also identified the need for more contextual studies directly exploring the topic of compassion from the perspectives of individuals within diverse ethnic groups, rather than superimposing a predefined, enculturated and researcher-based definition of compassion. Full text: view source »

Ten studies were identified through a database search. Seven of the 10 studies found significant improvement in at least 1 pain marker. Of the 7 studies that looked at changes in pain knowledge, 5 had significant improvements in at least 1 knowledge sub-scale. The 2 studies that looked at adherence to pain management found significant improvements. One limitation of the reviewed studies was that the delivery of them would not be efficient across all health-care settings, and, as a consequence, more technologically sophisticated delivery methods are needed. Therefore, while it is clear from the review that effective pain management interventions have been developed for hospice and PC patients, it is also clear that future research needs to focus on providing these same interventions through a more technologically sophisticated delivery method. Abstract: view source »

A new frontier in palliative medicine research is needed

JOURNAL OF PALLIATIVE MEDICINE, 2018;21(5):580. If our scientists are to help us, they must have the courage to perform research across a boundary that heretofore has not been crossed. As we face the certain prospect of limited resources available for healthcare, I think we need more than "it's her choice" models of healthcare delivery. The emerging consumerism of "give them what they want at a price they can afford" is worse. I would rather be guided by medical science about this common but perplexing feature of human beings. What might this research look like? The development of validated tools that help us distinguish differences. Clinical trials, such as those testing communication algorithms, enroll an arm of patients and family members who believe in supernatural action and an arm of people who do not. Determining functional MRI patterns in people who believe in the supernatural versus those who do not when considering a serious health situation. What are the patterns of stress hormones? Outcomes of palliative care consultation teams are stratified by whether the patients and families (and clinicians) believe in a supernatural world. Those outcomes are not just "satisfaction," but also symptom and economic outcomes. Patient/family satisfaction surveys are stratified by the belief in the supernatural. What helps? What hurts? As a clinician, I need better tools for this group of people I am asked to help. Currently, I have nothing better than my ability to be "diplomatic" or "culturally competent." I fervently wish our next cohort of bright young clinician scientists take on this methodologically challenging frontier. Access at: view source »

A snapshot of Australian social workers in palliative care and their work with estranged clients

SOCIAL WORK IN HEALTH CARE | Online – 14 May 2018 – The authors describe a mixed method survey that was administered to a group of Australian palliative care social workers. Specifically, it aimed to investigate the ways that social workers understood and worked with clients who were estranged from family at the end of life. Respondents suggested that estrangement potentially impacted clients emotionally, practically, and existentially. They were challenged to make clear assessments, provide emotional support, encourage new ways of thinking about estrangement, to manage practical issues, work with the client's family, and monitor their own professional role. Theories and models of intervention and levels of training are discussed. Abstract: view source »

The programme demonstrated the importance of person-centred cultures for sustainable person-centred care; the creation of such cultures is imperative if sustainable person-centred care is to be made a reality. Human flourishing is a desirable moral goal in organisations, recognising the need for the personhood of all persons to be respected. If we are to move beyond the rhetoric of person centredness and truly embrace its values, then the continuous articulation of "patient-centredness disguised as person-centredness" needs to end. Full text: view source »

Palliative care in the global setting: American Society of Clinical Oncology resource-stratified practice guideline

JOURNAL OF GLOBAL ONCOLOGY | Online – 8 May 2018 – The purpose of this new resource-stratified guideline is to provide expert guidance to clinicians and policymakers on implementing palliative care (PC) of patients with cancer and their caregivers in resource-constrained settings and is intended to complement the Integration of Palliative Care Into Standard Oncology Care: American Society of Clinical Oncology (ASCO) Clinical Practice Guideline Update of 2016. The recommendations help define the models of care, staffing requirements, and roles and training needs of team members in a variety of resource settings for PC. Recommendations also outline the standards for provision of psychosocial support, spiritual care, and opioid analgesics, which can be particularly challenging and often overlooked in resource-constrained settings. The guideline is intended to complement but not replace local guidelines. Full text: view source »

Measuring the impact of the home health nursing shortage on family caregivers of children receiving palliative care

JOURNAL OF HOSPICE & PALLIATIVE NURSING, 2018;20(3):260-265. The national nursing shortage [in the U.S.] translates into a gap in home nursing care available to children with complex, chronic medical conditions and their family caregivers receiving palliative care (PC) consultations. A total of 38 home health nursing surveys were completed by families receiving pediatric PC consultation services at a freestanding children's hospital in the Midwest. The gap in the average number of nursing hours allotted versus received was 40 h/wk per family, primarily during evening hours. Parents missed an average of 23 hours of employment per week to provide hands-on nursing care at home, ranking stress regarding personal employment due to nursing shortage at 6.2/10. Families invested an average of 10 h/mo searching for additional nursing coverage and often resorted to utilizing more than 6 different home nurse coverage personnel per month. Families reported multiple delays to hospital discharges (mean, 15 days per delay) due to inability to find home nursing coverage. Abstract: view source »

These approaches were effective to time-dependently increase the home death rate as a clinical outcome. In previous studies, difficulty in appropriately performing procedures not covered by home care physicians, such as catheter management and expensive drug administration, tended to be a barrier to home care. Based on this, the outreach approach provided in this study may have contributed to the increase in the home death rate. Furthermore, it has been reported that once patients are hospitalized due to deterioration, the probability of discharge decreases, consequently increasing hospital deaths. Prompt consultation and management provided by PC specialists are needed to prevent such situations. The outreach approach may have contributed to this. Full text: view source »

Cannabis in end-of-life care: Examining attitudes and practices of palliative care providers

JOURNAL OF PSYCHOACTIVE DRUGS | Online – 1 May 2018 – Medical cannabis research has become quite extensive, with indications ranging from glaucoma to chemotherapy-induced nausea. Despite increased interest in cannabis' potential medical uses, research barriers, cannabis legislation, stigma, and lack of dissemination of data contribute to low adoption for some medical populations. Of interest, cannabis use appears low in palliative care (PC) settings, with few guidelines available to PC providers. The authors sought to examine the attitudes, beliefs, and practices of PC providers regarding the use of cannabis for terminally ill patients. Results [of an online survey] demonstrated that PC providers endorse cannabis for a wide range of symptoms, end-of-life care generally, and as an adjuvant medication. Nevertheless, the gap between these beliefs and actual recommendation or prescription appears vast. Many who support the use of cannabis in PC do not recommend it as a treatment. These data suggest recommendations for healthcare providers and PC organizations. Abstract: view source »

Religious preference and hospice choice

OMEGA – JOURNAL OF DEATH & DYING | Online – 3 May 2018 – The authors employed a database from a large hospice provider with offices in 16 states to examine the impact of religious preference on hospice choice. Little work has been done on this issue, even though religion is the only social institution that specifically addresses the end of life (EoL). Hospice work, in particular, has drawn little attention despite it effecting millions of patients and their families. Of all the medical sub-specialties, hospice is one of the most effected by society's views on death and religious views of dying. It is also the only government-funded medical service that requires religious support be made available to patients. The authors' hypothesis is that certain religious groups have a predisposition against EoL interventions and will be less likely to utilize hospice. This impacts a multi-billion dollar a year industry that supplies hospice service to millions of patients, and this research points to one major religious group not accessing their hospice benefit at the same rate as other denominations. Full text: view source »

They provide a taxonomy of miracle-invocations that assist the ethicist in analyzing the invocator's conceptions of God, community, and self. After the ethicist appreciates how these concepts influence the invocator's worldview, she can begin responding to this hope with specific practices. The authors discuss these practices in detail and offer concrete recommendations for a justified response to the hope for a miracle. Abstract: view source »

Palliative care in humanitarian crises: A review of the literature

JOURNAL OF INTERNATIONAL HUMANITARIAN ACTION | Online – 20 April 2018 – The authors presents findings from a review of the literature (2005-2017) on palliative care (PC) in humanitarian crises (e.g., disasters, armed conflicts, epidemics). This review set out to describe PC needs, practices, barriers, and recommendations in humanitarian crisis settings. It contributes to current discussions within the field of humanitarian healthcare aimed at clarifying whether or not and how best to respond to PC needs in humanitarian crises. Analysis of 95 peer-reviewed and gray literature documents reveal a scarcity of data on PC needs and interventions provided in crises, challenges of care provision particularly due to inadequate pain relief resources and guidelines, a lack of consensus on the ethics of providing or limiting PC as part of humanitarian healthcare response, and the importance of contextually appropriate care. These findings suggest more research and open discussion on PC in humanitarian crises are needed. This review contributes to defining PC needs in humanitarian crises, building consensus on humanitarian healthcare organizations' ethical responsibilities towards individuals and families with PC needs, and developing realistic and context-appropriate policies and guidelines. Full text: view source »

Of special note

Barbara Bush and the problem with "comfort care"

U.S. (Pennsylvania) | The Inquirer (Philadelphia) – 24 April 2018 – Two days before she died, former first lady Barbara Bush announced through a family spokesman that, in light of her failing health, she would not seek additional medical treatment, opting instead for "comfort care." Scouring Twitter after the announcement, I found that most tweets expressed sorrow, largely because Mrs. Bush was electing comfort care and that meant that she would die imminently. Many other tweets lauded her choice of comfort care, noting how brave she was to stop treating her illness. Both of these sentiments reflect the language problem that doctors and patients have at the end of life. When physicians such as me divide care into "medical treatment" and "comfort care," we ignore that we should focus on both comfort and medical treatment at the same time. Medicare policy reinforces the divide between medical care and comfort care. For example, patients must forgo curative treatment (such as chemotherapy) if they choose to enroll in hospice. As an oncologist, I see on a daily basis how this language problem makes it harder for doctors to do what's best for our patients. view source »

This experimental study was conducted at a major U.S. hospital serving a diverse population. Patients visiting a cancer clinic encountered opportunities to learn more about cancer care. They were offered health materials that were described as reporting on "palliative," "supportive," or "hospice" care and the primary outcome was whether a patient decided to select or reject each. As a secondary outcome, the study measured the patient's level of interest in receiving each. In this study, the terminology used had a large effect and, compared with alternatives, the information labeled as being about "supportive" care was significantly more likely to be selected. If these effects are supported by additional research, there may be low-cost, highly feasible changes in language choice that increase the dissemination of relevant health information. Abstract: view source »

Medical assistance in dying: A paediatric perspective

PAEDIATRICS & CHILD HEALTH, 2018;23(2): 125-130.
In June 2016, [Canada's] Bill C-14 was enacted, allowing medical assistance in dying (MAiD) for an eligible adult whose death is "reasonably foreseeable." An independent report on the status of "mature minors" (who are currently excluded under federal legislation), with focus on their potential eligibility for MAiD, was required by the 2016 Act and is expected to be presented to Parliament by December 2018. Ensuring that newborns, children and youth receive the highest possible standard of care as they are dying is a privilege and a responsibility for physicians and allied professionals. Bringing a thoughtful, respectful and personal approach to every end-of-life situation is an essential and evolving duty of care, and the process should meet each patient's (and family's) unique social, cultural and spiritual needs. This statement describes the current Canadian legal and medical context of MAiD and articulates a paediatric perspective that has emerged from – and been informed by – the broad, structured consultation process unfolding in Canada and elsewhere. Although "mature minors" are the only youth currently mandated for further legislative consideration in Canada, the need to examine requests for and attitudes around MAiD for minors of all ages remains compelling for two main reasons: Canadian health care professionals are increasingly being approached by the parents of "never-competent" infants and children, including those too young to make a reasoned decision, and by youth themselves, to discuss MAiD related issues; and, the discussion of MAiD policy in Canada has been framed as much by the issue and context of suffering as by considerations of autonomy. While current legislation clearly prohibits MAiD for incapable persons at the request of any other person, it is possible that parents may request MAiD on behalf of their dying child. Full text: view source »

Extract from the Paediatrics & Child Health article: The role of palliative care

Palliative care (PC) and medical assistance in dying (MAiD) provide philosophically and clinically distinct – though interconnected – medical services. Some parents and clinicians fear PC as being focused on death rather than on life, and education around PC often involves explaining its essential role in optimizing quality of life for as long as possible. If PC physicians were also to engage in the MAiD process, some practitioners believe that fear and apprehension might intensify. At the same time, however, PC practitioners have acquired invaluable wisdom and experience caring for individuals and families living with advanced illness. Requests for MAiD may still arise in the context of excellent PC, and the expertise and experience of PC specialists must remain available to families considering MAiD. Furthermore, paediatric PC physicians may also wish to participate in MAiD, if and when legislative changes extend MAiD to some paediatric patients. Irrespective of personal beliefs, access to high quality PC must be seamless for those in need, whatever end-of-life options are being contemplated.

The involvement of cancer patients in the four stages of decision-making preceding continuous sedation until death: A qualitative study

PALLIATIVE MEDICINE | Online – 18 April 2018 – Professional guidelines emphasize that the decision to initiate continuous sedation should be made in accordance with the wishes of the dying person and be preceded by their consent. Interviews were conducted with 26 physicians, 30 nurses and 24 relatives caring for 24 patients with cancer who received continuous sedation until death in Belgium, the U.K. and The Netherlands. The authors distinguished four stages of decision-making: initiation, information exchange, deliberation and the decision to start continuous sedation until death. There was wide variation in the role the patient had in the decision-making process. At one end of the spectrum (mostly in the U.K.), the physician discussed the possible use of sedation with the patient, but took the decision themselves. At the other end (mostly in Belgium and The Netherlands), the patient initiated the conversation and the physician's role was largely limited to evaluating if and when the medical criteria were met. The authors recommend building into clinical practice regular opportunities to discuss the goals and preferences of the person who is dying for their future medical treatment and care. Abstract: view source »

This consequently warrants the underlying importance of palliative care (PC) and integrating it into the patients' health care plans earlier. There is increasing evidence from recent trials that supported implementing national policies regarding the early integration of PC and its role in improving the quality of life, increasing survival, and supporting patients' and caregivers' values when making decisions about their health care while possibly minimizing the burden of illness. Full text: view source » (90 KB)

Raise the bar, not the threshold value: Meeting patient preferences for palliative and end-of-life care

PHARMACOECONOMICS | Online – Accessed 8 April 2018 – Despite increasing interest in economic evaluation of palliative and end-of-life care (P&EoLC), research on patients' preferences and values to robustly inform such analysis in this setting is relatively scarce. In a special issue of Palliative Medicine on the economics of P&EoLC just one article focused on this controversial topic.¹ In large part this may be due to the complexities of palliative care (PC), which aims to improve "the quality of life of patients and families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual." Clearly, PC is multidimensional and people value domains above and beyond health status. There is utility from the dying process; people have preferences for their place of care and place of death along the dying trajectory and derive benefit from preparing themselves and others for their impending death. Further, reducing families' and carers' distress and improving their well-being are integral aspects of care. People also value aspects such as not being a burden on family and friends, and receiving high-quality healthcare as much as, or even more than, improvements in health status or extension of life when receiving PC. Yet, clinicians and decision makers don't always accord the same value to these patient preferences. Full text: view source »

1. 'An economic view on the current state of the economics of palliative and end-of-life care,' Palliative Medicine, 2017;31(4):291-292. [Noted in the 20 March 2017 issue of Media Watch (#504, p.13] Full text: view source »

At both the beginning and end of their training, a significant proportion of students expect PC to be less satisfying than other care (19.3% first year, 16% final year). Students expecting PC to be less satisfying were more likely to be men, and their attitudes suggest that while they understand the importance of providing PC they are concerned about the potential impact of this kind of work on them personally. Medical student education needs to address why PC is important and how to deliver it effectively, and the strategies for dealing positively with the impact of this work on future clinicians. Abstract: view source »

Perhaps quality of life should not be used as a trigger for discussing resuscitation and advance care plans

EMERGENCY MEDICINE AUSTRALASIA | Online – 2 April 2018 – As a subjective measure, quality of life (QoL) should not be used as a trigger for discussing resuscitation, goals of care or advanced care plans. Limitations and challenges in measurement and assessment of QoL have been recognised. It is a fluid construct and subject to changes and response shifts. Surrogate QoL estimations may misrepresent individual worth and self-perceived QoL. Disagreement over QoL statements may cause harm. Abstract: view source »

Ten tips nephrologists wish the palliative care team knew about caring for patients with kidney disease

JOURNAL OF PALLIATIVE MEDICINE | Online – 1 April 2018 – Many patients with chronic kidney disease (CKD) and end-stage renal disease have unmet palliative care (PC) needs. Physical and emotional symptoms are common. Some, like uremia and fluid overload, improve with dialysis, but the increasing age of patients initiating renal replacement therapy leaves many untreatable comorbidities like dementia and frailty to negatively impact quality of life. Written by nephrologists and PC clinicians, this article will help PC providers to have a richer understanding of kidney disease-related symptom burden, disease trajectory, prognosis, and barriers to hospice enrollment for patients with CKD and end-stage renal disease. Abstract: view source »

They suggest as a hypothesis that healthcare providers' decision making is sometimes affected by value-impregnated factual claims or assumptions. If such claims influence e.g., doctor-patient encounters, this will likely have a negative impact on the provision of correct information to patients and on patients' influence on decision making regarding their own care. The authors explore the idea that value-impregnated factual claims influence healthcare decisions through a series of medical examples. Full text: view source »

Nudge or grudge? Choice architecture and parental decision‐making

THE HASTINGS REPORT, 2018;48(2):33-39. Much has been written about the ethics of nudging competent adult patients. Less has been written about the ethics of nudging surrogates' decision‐making and how the ethical considerations and arguments in that context might differ. Even less has been written about nudging surrogate decision‐making in the context of pediatrics, despite fundamental differences that exist between the pediatric and adult contexts. Yet, as the field of behavioral economics matures and its insights become more established and well‐known, nudges will become more crafted, sophisticated, intentional, and targeted. Thus, the time is now for reflection and ethical analysis regarding the appropriateness of nudges in pediatrics. The authors argue that there is an even stronger ethical justification for nudging in parental decision‐making than with competent adult patients deciding for themselves. They give three main reasons in support of this: 1) Child patients do not have autonomy that can be violated (a concern with some nudges), and nudging need not violate parental decision‐making authority; 2) Nudging can help fulfill pediatric clinicians' obligations to ensure parental decisions are in the child's interests, particularly in contexts where there is high certainty that a recommended intervention is low risk and of high benefit; and, 3) Nudging can relieve parents' decisional burden regarding what is best for their child, particularly with decisions that have implications for public health. Abstract: view source »

Of special interest

Caring for the chronically ill in Bangladesh's Rohingya camps

BANGLADESH | IRIN Association (Formerly the UN's Integrated Regional Information Network) – 28 March 2018 – Along with the [Rohingya] refugees, medical workers flooded into Cox's Bazar [a town on the southeast coast of Bangladesh]. They treated traumatic injuries, raced to reverse severe malnutrition exacerbated by displacement and disease, and set up an emergency medical care system in the chaotic first weeks of the influx. But despite the scale of the response, healthcare advocates say thousands of people with incurable diseases are still ignored by a system that overlooks the needs of the dying or gravely ill. "I saw people were treating only acute patients and palliative care (PC) was being neglected," said Farzana Khan, a doctor who founded the Bangladesh-based Fasiuddin Khan Research Foundation, a private group that set up the programme that helps Sanjida and 200 other severely ill patients. Advocates of PC say it's the first programme to offer dedicated help for people with chronic or life-threatening illnesses during a humanitarian response. "There's absolutely no reason why PC can't be there as part of the health system," said Joan Marston, co-founder of PalCHASE (Palliative Care in Humanitarian Aid Situations & Emergencies Network), a U.K.-based organisation that advocates for such assistance to be included in responses to disasters and conflict. "It really is about the dignity of the individual. There's enough indignity within these humanitarian situations." There's no allotment for PC in the recently released $950-million Rohingya [international] response plan, which outlines the aid sector's priorities through the end of the year. But Marston said the scarcity of this kind of care during humanitarian emergencies reaches far beyond the current crisis in Bangladesh. view source »

Five main themes were generated from 266 YouTube video comments analyzed. The most common was emotionality, of which 91% were positive statements. Facebook and Twitter were mostly used by health-care professionals and not the public. PC resources are mostly positive and consistent with the current definition of PC. Major Internet search engines such as Google and YouTube provide valuable insight into information the public receives about PC. Future development of Internet resources on PC should consider including children and emphasizing PC for all life-limiting illnesses. Abstract: view source »

Ethical challenges for an understanding of suffering: Voluntary stopping of eating and drinking and the wish to hasten death in advanced patients

FRONTIERS IN PHARMACOLOGY | Online – 14 March 2018 – Some persons with advanced disease but no significant cognitive impairments consciously decide to stop taking food and fluids orally, even though they remain physically able to do so. The question is to what extent voluntarily stopping eating and drinking (VSED) may be considered an expression of a wish to hasten death, in the sense that the latter has been defined recently. The authors analyze the data reported in some studies in relation to primary care patients who died as a result of VSED and examine their results in light of the qualitative findings of patients that expressed a wish to die. In their view, VSED can be understood as a response to physical/psychological/spiritual suffering, as an expression of a loss of self, a desire to live but not in this way, a way of ending suffering, and as a kind of control over one's life. Thus, VSED is consistent with the wish to hasten death. Prior to interpreting this act as a deliberate expression of personal autonomy, it is important to explore all possible areas of suffering, including physical symptoms, psychological distress, existential suffering and social aspects. Failure to do so will mean that we run the risk of abandoning a fellow human being to his or her suffering. Abstract: view source »

The voice is as mighty as the pen: Integrating conversations into advance care planning

JOURNAL OF BIOETHICAL INQUIRY | Online – 17 March 2018 – Advance care planning (ACP) allows patients to articulate preferences for their medical treatment, lifestyle, and surrogate decision-makers in order to anticipate and mitigate their potential loss of decision-making capacity. Written advance directives are often emphasized in this regard. While these directives contain important information, there are several barriers to consider: veracity and accuracy of surrogate decision-makers in making choices consistent with the substituted judgement standard, state-to-state variability in regulations, literacy issues, lack of access to legal resources, lack of understanding of medical options, and cultural disparities. Given these issues, it is vital to increase the use of patient and healthcare provider conversations as an ACP tool and to increase integration of such discourse into ACP policy as adjuncts and complements to written advance directives. The authors reviews current legislation about written advance directives and dissects how documentation of spoken interactions might be integrated and considered. They discuss specific institutional policy changes required to facilitate implementation. The authors explore the ethical issues surrounding the increased usage and recognition of clinician-patient conversations in ACP. Abstract (inc. list of references): view source »

This paper examines how the application of shared decision-making may contribute to the experience of moral distress for physicians and why such distress may go under-recognized. Appreciation of these dynamics may assist in cross-discipline sensitivity, enabling more constructive dialogue and collaboration. Abstract (w. list of references): view source »

Spiritual distress within inpatient settings: A scoping review of patient and family experiences

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 13 March 2018 – Within the 37 articles meeting inclusion criteria, the authors identified six themes: 1) Conceptualizing spiritual distress (SD); 2) Diagnosis and prevalence; 3) Assessment instrument development; 4) Experiences; 5) Associated variables; and, 6) Barriers and facilitators to clinical support. The majority of studies focused on patients; two studies focused on family caregivers. The most common clinical settings were oncology and advanced disease. Terminology to describe SD varied amongst studies. The prevalence of at least moderate SD in patients was 10-63%. SD was experienced in relation to self and others. Associated variables included demographic, physical, cognitive and psychological factors. Barriers and facilitators were described. Patient and family experiences of SD in the inpatient setting are multifaceted. Important gaps in the literature include a narrow spectrum of populations, limited consideration of family caregivers, and inconsistent terminology. Research addressing these gaps may improve conceptual clarity and help clinicians better identify SD. Abstract (w. list of references): view source »

Palliative sedation: The end of heated debate?

PALLIATIVE MEDICINE | Online – 13 March 2018 – The long list of publications on palliative sedation (PS) in this journal demonstrates that research in the past decades has come a long way in describing and comparing its practice. However, several questions remain. How can we explain its rather high frequency in some countries? Also, in an era of increased emphasis on shared decision-making, how can patients or their representatives be adequately involved in the decision-making process? How should we deal with patients who suffer unbearably from refractory symptoms, but have a life expectancy of more than 1-2  weeks? Future work should critically evaluate whether PS guidelines still reflect and support current clinical and societal views on a good death. It should also focus on education about PS in medical and nursing curricula and informing the general public about what PS is and when it can be used. Such education would facilitate informed debates about the circumstances in which PS can be an acceptable procedure to support a good death. Full text: view source »

The findings [of this study] appear to show a high satisfaction with quality of dying and death as rated by ICGs and HCPs, but the authors suspect this might be indicative of a methodological challenge, that is, a ceiling effect in both assessments. Single low scoring items may provide important clues for improvement in end-of-life care. Although descriptive data show comparable mean values and standard deviations, the actual congruence of ratings is low. Replacing one rating by another cannot be recommended. Abstract: view source »

No one said he was dying: Families' experiences of end-of-life care in an acute setting

AUSTRALIAN JOURNAL OF ADVANCED NURSING, 2018;35(3):21-31. This study identified key actions for nurses and doctors in providing a best practice approach to caring for the dying person. Firstly, allowing families time to prepare for their loved ones death by identifying that the person is dying and family as soon as possible. Families need to be involved in the conversations, and have information, including prognosis, explained to them. Clinicians should be sensitive, use plain language and avoid euphemisms, with follow up to ensure the family understands. Secondly, there is potential for ambiguity and uncertainty at the end of life. Clinicians should explain the prognosis and that the dying process varies between individuals. This must be honestly and openly acknowledged, and discussed with patients, substitute decisionmakers, families and carers. Finally, families of people who are dying also need care from the treating team, both during the dying process and following the death. There is a need to ensure there is support for the family with their grief responses and to identify those that are at risk of complicated grief. In order to address these priorities all members of the interdisciplinary team should receive education and training to prepare them for having conversations about end-of-life care. To access the full text, click on the journal contents page and scroll down to the article: view source »

Barriers to advance care planning in end-stage renal disease: Who is to blame, and what can be done?

THE NEW BIOETHICS | Online – 7 March 2018 – Patients with end-stage renal disease experience significant mortality and morbidity, including cognitive decline. Advance care planning has been emphasized as a responsibility and priority of physicians caring for patients with chronic kidney disease in order to align with patient values before decision-making capacity is lost and to avoid suffering. This emphasis has proven ineffective, as illustrated in the case of a patient treated in the authors' hospital. Is this ineffectiveness a consequence of failure in the courtroom or the clinic? Through the authors' own experience they affirm what has been written before: that legal precedent favors intensive treatment in virtually all cases without "clear and convincing evidence" of a patient's previously declared wishes to the contrary. Equally clear is that more than 20 years of support in the clinical literature suggesting ACP early in the course of disease can address challenges in the legal system for those lacking capacity. However, many physicians fail to recognize the need for ACP in a timely manner and lack the necessary training to provide it. The need for more training and new tools to recognize opportunities for ACP in daily practice remains unmet. Abstract: view source »

Patients were subsequently asked their opinion about this assessment. Correlation between scores on the SAHD-5 and the DDRS was moderate. The SAHD-5 identified 13 patients at risk of the WTHD, and the DDRS identified 6 patients with a moderate-high WTHD. Concordance between the DDRS and SAHD-5 in identifying individuals with an elevated WTHD was poor when using recommended cut-off scores..., but could be improved by using different thresholds. Only 4 patients regarded the assessment questions as bothersome, and 90.6% considered it important that healthcare professionals inquire about the WTHD. Abstract: view source »

The Liverpool Care Pathway for the Dying Patient: A critical analysis of its rise, demise and legacy in England

WELLCOME OPEN RESEARCH | Online – Accessed 27 February 2018 – The Liverpool Care Pathway for the Dying Patient ("the LCP") was an integrated care pathway (ICP) recommended by successive governments in England & Wales to improve end-of-life care (EoLC), using insights from hospice and palliative care (PC). It was discontinued in 2014 following mounting criticism and a national review. The ensuing debate among clinicians polarised between "blaming" of the LCP and regret at its removal. The authors aimed to address three questions: 1) Why and how did the LCP come to prominence as a vehicle of policy and practice; 2) What factors contributed to its demise; and, 3) What immediate implications and lessons resulted from its withdrawal? The rapidity of transfer and translation of the LCP reflected uncritical enthusiasm for ICPs in the early 2000s. The subsequent LCP "scandal" demonstrated the power of social media in creating knowledge, as well as conflicting perceptions about end-of-life interventions. While the LCP had some weaknesses in its formulation and implementation, it became the bearer of responsibility for all aspects of National Health Service (NHS) EoLC. This was beyond its original remit. It exposed fault lines in the NHS, provided a platform for debates about the "evidence" required to underpin innovations in PC and became a conduit of discord about "good" or "bad" practice in care of the dying. It also fostered a previously unseen critique of assumptions within PC. In contrast to most observers of the LCP story who refer to the dangers of scaling up clinical interventions without an evidence base, the authors call for greater assessment of the wider risks and more careful consideration of the unintended consequences that might result from the roll out of new end-of-life interventions. Full text: view source »

Even if PTSD is properly diagnosed, traditional evidence-based trauma-focused treatments may not be feasible or advisable with this group as many patients at EoL often lack the physical and mental stamina to participate in traditional psychotherapy. This article reviews the clinical and empirical literature on PTSD at EoL, as well as discusses assessment and psychotherapy treatment issues with this neglected population. Abstract: view source »

Palliative medicine: Has there been mission rift?

EUROPEAN JOURNAL OF PALLIATIVE CARE, 2018;25(1):6-8. With its new-found status, one of palliative medicine's first challenges was to confront the prospect of evidence-based medicine. This new paradigm suggested tradition, anecdote and theoretical reasoning be replaced by evidence from high-quality randomised control trials and observational studies. In combination with "clinical expertise," these were to provide clinicians with the knowledge to drive healthcare into the new millennium. Thirty years later, other specialties have amassed an evidence base that stands tall over that of palliative medicine (PM). However, somewhat contradictorily, PM is widely regarded as offering a standard of care second to none. Within this paradox lies the answer to what really matters to people. Evidence-based medicine has its limitations. It has become distorted by vested interests, uses surrogate outcomes to establish efficacy, is a poor fit for frailty and multi-morbidity, and there are huge problems with publication bias. Despite this, we have created a volume of research and guidelines that has left us at saturation point. Compulsive reliance on evidence has created a breed of clinician trained in following a template driven approach that stifles development of the subtleties of clinical expertise. What lies beyond evidence-based medicine?

A framework for complexity in palliative care: A qualitative study with patients, family carers and professionals

PALLIATIVE MEDICINE | Online – 19 February 2018 – Palliative care (PC) patients are often described as complex, but evidence on complexity is limited. We need to understand complexity, including at individual patient-level, to define specialist PC, characterise PC populations, and meaningfully compare interventions/outcomes. Semi-structured interviews [were conducted] across six U.K. centres with patients, family, professionals, managers and senior leads, sampled by experience, background, location and setting (hospital, hospice and community). Participants provided an understanding of complexity, which extended far beyond the commonly used physical, psychological, social and spiritual domains. Complexity included how patients interact with family/professionals, how services respond to needs and societal perspectives on care. "Pre-existing," "cumulative" and "invisible" complexity are further important dimensions to delivering effective palliative and end-of-life care. The dynamic nature of illness and needs over time was also profoundly influential. Stakeholders found it acceptable to capture complexity at the patient-level, with perceived benefits for improving PC resource allocation. Full text: view source »

The Theory of Change map provides the first comprehensive rationale of how ACP is expected to work in nursing homes, something that has not been shown by research before, but for which repeated calls have been made. We will use these insights in the further design of the ACP intervention and its evaluation to explore in greater depth how, why and in what circumstances ACP works best in routine nursing home care in Belgium. Full text: view source »

Research involving dying persons: Time to reconsider?

COLLEGIAN (Australian Journal of Nursing Practice, Scholarship & Research), 2018;25(1):1-2. Using research to generate evidence to inform clinical practice is a position adopted almost universally in healthcare, with health care organisations, policymakers and clinicians using research evidence to improve the quality of care. Yet, when it comes to palliative and end-of-life (EoL) care, the situation may be different. Research involving the dying, whether conducted in palliative care settings or elsewhere, is often considered ethically challenging and controversial. This is because of concern about the actual or potential vulnerability of persons approaching the EoL and whether the dying person can or should be involved in research. Yet, the caution associated with research participation for those who are dying, might need to be reconsidered. Despite concern from ethical review boards, researchers, clinicians and consumers that research involving dying persons might be intrusive, inappropriate or unethical, the research evidence suggests that dying persons who have participated in research did so with very good reason. Full text: view source »

A moment for compassion: Emerging rhetorics in end-of-life care

Medical Humanities | Online – 10 February 2018 – "Compassion" has become the flagship concept to be fostered in the delivery of end-of-life care (EoLC), and a rallying call for social action and public health intervention. The authors examine the emerging rhetorics of compassion as they relate to EoLC and offer a critique of the expanding discourse around it. They argue, even where individuals "possess" compassion or are "trained" in it, there are difficulties for compassion to flow freely, particularly within Western society. This relates to specific sociopolitical structural factors that include the sense of privacy and individualism in modern industrialised countries, highly professionalised closed health systems, anxiety about litigation on health and safety grounds, and a context of suspicion and mistrust within the global political scenario. We must then ask ourselves whether compassion can be created intentionally, without paying attention to the structural aspects of society. One consequence of globalisation is countries in the global South are rapidly trying to embrace the features of modernity adopted by the global North. The authors argue unrealistic assumptions have been made about the role of compassion in EoLC and these idealist aspirations must be tempered by a more structural assessment of potential. Compassion that is not tied to to realistic action runs the risk of becoming empty rhetoric. Full text: view source »

Today, there are 49,000 infants, children and young people (0-18 years) living with life-limiting conditions in the U.K. The recommendations aim to support a wide variety of professionals, and infants, children and young people with life-limiting conditions and their families, with issues regarding end-of-life and palliative care. Guidance on basic symptom management, communication, advance care planning and service delivery is included. This is the first U.K. published guideline on this subject, but there have been several published frameworks, care pathways, drug formularies and symptom management guidelines in this. Abstract: view source »

Integrated palliative care networks from the perspectives of patients: A cross-sectional explorative study in five European countries

PALLIATIVE MEDICINE | Online – 5 February 2018 – Although examining perspectives of patients on integrated palliative care (PC) organisation is essential, available literature is largely based on administrative data or healthcare professionals' perspectives. The authors recruited 157 patients from 23 integrated PC initiatives in Belgium, Germany, the U.K., Hungary and The Netherlands. About 33% reported contact with a PC specialist and 48% with a PC nurse. Relationships with PC specialists were rated significantly higher than other physicians. Compared to patients with cancer, patients with chronic obstructive pulmonary disease and chronic heart failure had significantly lower odds of reporting contact with PC specialists and patients with chronic obstructive pulmonary disease had significantly lower odds of reporting contact with PC nurses. Perceptions of main responsible healthcare professionals or caregivers in patient's care networks varied across countries. Perceived integration was significantly associated with overall satisfaction. Expert PC involvement needs to be explicated especially for non-cancer patients. One healthcare professional should support patients in understanding and navigating their PC network. Patients seem satisfied with care provision as long as continuity of care is provided. Full text: view source »

Family meetings in in-patient specialist palliative care: A mechanism to convey empathy

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 5 February 2018 – Families [i.e., study participants] reported more empathy from staff following a family meeting... Some families with relatives who do not speak with each other reported that meeting facilitators were unable to manage the pre-existing dynamics. It would be beneficial to have more specific preparation and planning by the clinical team for meetings with people who have a history of familial conflict, and those where the staff's agenda is around discharge planning. Published guidelines could be adapted to better support staff to run meetings where there are complex family dynamics. Adoption of family meetings in outpatient settings has the potential to improve perceptions of empathy with a larger patient group. Abstract: view source »

Paediatricians learn to live with uncertainty and similarly have to support parents and young people to accept this uncertainty. Sometimes we have to wait for nature to reveal itself or for the future to unfold as it should. Herein lies the art of paediatrics: the ability to watch and wait, intervening in a timely fashion when required to do so and recognising the sad eventuality of having to let go of life at times. This is our craft: to do what is in the child's best interests and use therapies that will help with life's quality but not unnecessarily prolong inevitable death. However there are competing interests in this delicate balance in doing what is right for the child. Abstract: view source »

Surveying care teams after in-hospital deaths to identify preventable harm and opportunities to improve advance care planning

THE JOINT COMMISSION JOURNAL ON QUALITY & PATIENT SAFETY, 2018;44(2):84-93. As part of a quality improvement initiative, a post-death care team survey was developed to explore how it might augment the existing process for learning from deaths. A survey was sent to the care team for all inpatient deaths on the hospital medicine and medical ICU services at one institution. Survey responses were reviewed to identify cases that required further investigation. During the distribution period ... 82 patients died, and 191 care team members were surveyed. Based on the survey responses, 5 patients (6.1%) not identified by other review processes were investigated further, resulting in the identification of several important opportunities for improvement. The free-text comment analysis revealed themes around the importance of advance care planning in seriously ill patients, as well as evidence of the emotional and psychological strain on clinicians who care for patients who die. Abstract: view source »

The growing demand for hospice and palliative medicine physicians: Will the supply keep up?

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 2 February 2018 – The need for hospice and palliative care is growing rapidly as the population increases and ages and as both hospice and palliative care become more accepted. Hospice and palliative medicine (HPM) is a relatively new physician specialty, currently training 325 new fellows annually. Given the time needed to increase the supply of specialty trained physicians, it is important to assess future needs to guide planning for future training capacity. The current U.S. supply of HPM specialists is 13.35 per 100,000 adults 65 and over. This ratio varies greatly across the country. Using alternate assumptions for future supply and demand, the authors project need in 2040 will range from 10,640 to almost 24,000 HPM specialist physicians. Supply will range from 8,100 to 19,000. Current training capacity is insufficient to keep up with population growth and demand for services. HPM fellowships would need to grow from the current 325 graduates annually to between 500 to 600 per year by 2030 to assure sufficient physician workforce for hospice and palliative care services given current service provision patterns. Abstract: view source »

The authors explored current processes, role perceptions and expectations, and perceived barriers to developing the model, which is now the standard of care and an example of interprofessional team collaboration across the healthcare system. This model for delivering bad news can be easily adapted to meet the needs of other clinical units. Abstract: view source »

Law as clinical evidence: A new constitutive model of medical education and decision-making

JOURNAL OF BIOETHICAL INQUIRY | Online – 18 January 2018 – Over several decades, ethics and law have been applied to medical education and practice in a way that reflects the continuation during the twentieth century of the strong distinction between facts and values. The authors explain the development of applied ethics and applied medical law and report selected results that reflect this applied model from an empirical project examining doctors' decisions on withdrawing/withholding treatment from patients who lack decision-making capacity. The model is critiqued, and an alternative "constitutive" model is supported on the basis that medicine, medical law, and medical ethics exemplify the inevitable entanglement of facts and values. The model requires that ethics and law be taught across the medical education curriculum and integrated with the basic and clinical sciences and that they be perceived as an integral component of medical evidence and practice. Law, in particular, would rank as equal in normative authority to the relevant clinical scientific "facts" of the case, with graduating doctors having as strong a basic command of each category as the other. The normalization of legal knowledge as part of the clinician's evidence base to be utilized in practice may provide adequate consolation for clinicians who may initially resent further perceived incursions on their traditional independence and discretion. Abstract (w. list of references): view source »

Spiritual care training in healthcare: Does it really have an impact?

PALLIATIVE & SUPPORTIVE CARE | Online – 23 January 2018 – Spiritual care has formed an integral part of palliative care (PC) since its inception. People with advanced illnesses, however, frequently report their spiritual needs are not attended to by their medical care team. This study examined and describes the impact of a spiritual care training program on practice and cultural change in a Canadian hospice. The authors' data suggest the program had a profound personal impact on attendees and contributed to a slight shift in practice patterns in their organization. Using a program not specifically tailored to local and organizational cultural contexts resulted in some unanticipated challenges such as the range of tensions between personal and cultural boundaries. Although some people criticized parts of the program or questioned the program's value, a general agreement suggests the program had a positive impact and meaningfully benefited the hospice. "What will happen next?" was the question most frequently voiced by interviewees. The present study suggests a systematic approach to spiritual care training that includes the concepts of workplace spirituality and sensitive practice offer useful frameworks for the development and implementation of spiritual care training in other institutions. Abstract: view source »

Three themes describing hope emerged: "assessing hope," "fostering and sustaining hope," and "attributes and outcomes of hope." The findings show how physicians conceptualize hope and how these conceptions differ in the empirical light of the study. Physicians' perceptions of "hope" may evolve when entering into a therapeutic relationship exploring the needs and desires of patients. Physicians' perspectives about "hope" may at times not be solely their own, but are those of their patients and thus resulting in an amalgamation, or a rebuilding/rekindling of hope amidst hopelessness, that suits a particular relationship. Abstract: view source »

Forgoing life-sustaining treatments in the ICU. To withhold or to withdraw: Is that the question?

MINERVA ANESTESIOLOGICA | Online – 17 January 2018 – In the last decades, mortality from severe acute illnesses has considerably declined thanks to the advances in intensive care medicine. Meanwhile, critical care physicians realized that life-sustaining treatments (LST) may not be appropriate for every patient, and end-of-life care in the intensive care unit (ICU) started to receive growing attention. Most deaths occurring in the ICU now follow a decision to forgo life-sustaining treatments (DFLST), which can be implemented either by withdrawing (WDLST) or withholding (WHLST) life-sustaining treatments. Despite the broad consensus about the equivalence of the two practices from an ethical point of view, the issue of the best option between WDLST and WHLST constantly gives rise to controversies in clinical practice. This review is not intended to take a stand for or against WDLST or WHLST. Based on available evidence, the definitions of the two practices are first presented. Secondly, the preferences of ICU physicians towards WDLST and WHLST are examined. Finally, some arguments are offered outlining pros and cons of WDLST and WHLST, stressing that the clinician's attention should focus on an early and thorough recognition of patients in need of a DFLST, rather than on the theoretical strength and weakness of the two practices. This approach will enable physicians to make informed decisions on how to implement the limitation of LSTs, considering the patients' clinical conditions and preferences, the circumstances and needs of their families. Abstract: view source »

The authors argue that one common, fact-oriented patient education strategy may in practice easily tend to take a destructive form that they call error trawling. They argue on independent grounds that this strategy not only risks to overlook significant weaknesses in patient decision competence, but also to undermine patient capacity for decision-making and implementing care. In effect, this strategy for clinically monitoring and addressing the problem of fragile decision-making capacity brings hazards in need of address. The authors close by suggesting complementary and alternative strategies, and comment on how these may call for broadened competency among clinical health professionals. Abstract: view source »

Voluntarily stopping eating and drinking: A normative comparison with refusing lifesaving treatment and advance directives

JOURNAL OF LAW, MEDICINE & ETHICS | Online – 10 January 2018 – Refusal of lifesaving treatment, and such refusal by advance directive, are widely recognized as ethically and legally permissible. Voluntarily stopping eating and drinking (VSED) is not. Ethically and legally, how does VSED compare with these two more established ways for patients to control the end of life? Is it more questionable because with VSED the patient intends to cause her death, or because those who assist it with palliative care could be assisting a suicide? In fact the ethical and legal basis for VSED is virtually as strong as for refusing lifesaving treatment and less problematic than the basis for refusing treatment by advance directive. VSED should take its proper place among the accepted, permissible ways by which people can control the time and manner of death. Abstract: view source »

Patients' and oncologists' views on family involvement in goals-of-care conversations

Psycho-Oncology | Online – 5 January 2018 – Research on patient and physician perspectives about family involvement and influence on goals-of-care conversations is limited. The authors conducted semi-structured interviews at academic, community and municipal hospitals with patients with advanced cancer and their oncologists. They identified four themes: 1) Presence and duration of family involvement; 2) Family expectations; 3) Protecting patients'/family members' feelings; and, 4) Patient-family disagreement. For patients, the authors identified two additional themes: 1) Family and oncologist relationship; and, 2) Effects of cancer on family. Both patients and oncologists emphasized the importance of family support for the patient's understanding of their illness and on patients' emotions. The authors also identified ways in which family involvement may benefit or prove challenging to goals-of-care conversations. Abstract: view source »

I trust experts to tell me what to do when I am lost in a maze that they can get out of. Likewise, we are called to help patients see through the misinformation, denial, overconfidence, distrust, and confusion that clouds their reasoning. When patients have metastatic cancer, they frequently do not know their prognosis, nor do they always understand the palliative intent of our treatment. This misconception holds for oncologists as well, who tend to overestimate survival time. Another major cause of over-treatment is that both physicians and patients tend to overvalue the end of life (EoL) and make irrational decisions. A life's ending is weighted especially heavily when quality of life (QoL) is judged. If you ask people to judge how desirable their life was, they overweight their life's quality at the end and ignore the duration. Physicians grasp this fact, preferring to avoid high-intensity EoL care more than non-physicians. However, we do not effectively communicate this skepticism to patients. Supportive care often yields a better QoL than active treatment, but it is underused and undervalued. Extending a poor QoL is considered a success due to biased thinking shaped by having extended lives of good quality. This misconception holds for oncologists, who tend to overestimate survival time... First page view: view source »

We're the eyes and the ears, but we don't have a voice: Perspectives of hospice aides

JOURNAL OF HOSPICE & PALLIATIVE NURSING, 2018;20(1):47-54. Hospice aides (HA) are integral to the delivery of home hospice care and play an essential role in the effective communication and collaboration of the hospice interdisciplinary team. Despite their critical role, little is known about their perceptions of their role in providing hospice services. This qualitative study explores HA's perspectives of their work; their relationships with patients, families, and interdisciplinary team members; and, their contributions to end-of-life care. Two focus groups of HAs and 16 hours of observation of in-home caregiving were conducted. Three themes were identified: 1) "We're the eyes and ears"; 2) "We're kept out of the loop"; and, 3) "We have no voice." HAs described themselves as frontline providers based on the close relationships they formed with patients and family members yet felt under recognized by members of the hospice team. Better understanding of their role could enhance the integration of HA into patient- and family-centered team interactions, leading to both improved patient and family outcomes and retention and support of this critical component of the hospice workforce. Abstract: view source »

"I'd recommend ..." How to incorporate your recommendation into shared decision making for patients with serious illness

JOURNAL OF PAIN & SYMPTOM MANAGEMENT | Online – 2 January 2018 – Patients and families facing serious illness often want and need their clinicians to help guide medical decision making by offering a recommendation. Yet clinicians worry that recommendations are not compatible with shared decision-making, and feel reluctant to offer them. The authors describe an expert approach to formulating a recommendation using a shared decision-making framework. They offer three steps: 1) Valuate the prognosis and treatment options; (2) Understand the range of priorities that are important to your patient given the prognosis; and, 3) Base your recommendation on the patient's priorities most compatible with the likely prognosis and available treatment options. Abstract: view source »