222 patients were included [in this study]: 80% (177/222) with lung cancer and 20% (45/222) with pancreas cancer. Medical oncology notes documented discussion of prognosis in 64% (142/222), palliative intent of therapy in 82% (182/222), magnitude of treatment benefit in 29% (64/222) and goals of care in 4% (9/222) of patients. An estimate of survival was documented in 36% (79/222) of cases. Across medical oncology providers there was substantial variation in the frequency of discussing prognosis (range 33-90%), treatment intent (range 55-100%), and goals of care (range 0-17%). In total, 41% (93/222) of patients were seen by palliative care (PC); substantial medical oncology provider variation was observed (range 27-58%). Referral rates to PC did not increase over time (41-44%). In this cohort of ambulatory patients with an estimated life expectancy of 1 year or less, medical oncology documentation of prognosis, treatment benefit and goals of care was poor. Less than half the patients were seen by PC. Initiatives to improve documentation and referral to PC are needed. view source »

"The tension for a cancer center to emphasize PC is profound," said Kathleen M. Foley, MD., a neurologist at the Memorial Sloan-Kettering Cancer Center in New York who specializes in pain management and palliative care. "A cancer center wants to be a cure center and to receive research funding for curative therapies. But my stance has always been that we can do both. Because the combination of potentially curative care together with alleviating symptoms and addressing a patient's quality of life – that is the best cancer care. Step by step, we are learning that we can care and cure at the same time." Jennifer S. Temel, MD., of the Massachusetts General Hospital in Boston, and colleagues carried out a keystone randomized study in metastatic lung cancer patients.¹ Patients who received PC in addition to chemotherapy had better quality of life and were less likely to be depressed and to receive aggressive treatment in the last few weeks of life. Most important, patients randomized to PC lived longer, with a median overall survival of 11.6 months, compared with 8.9 months in the standard therapy arm. view source »

1. 'Early palliative care for patients with metastatic non-small-cell lung cancer,' The New England Journal of Medicine, 2010;363(8):733-742. [Noted in Media Watch, 23 August 2010, #163 (p.8)] view source »

These approaches require different skills. The evidence is clear that in chronic, symptomatic illness a psychologically-informed approach is necessary to inform and motivate people to change established beliefs and habits, giving themselves the greatest chance of the best possible physical and psychological health in the longer term. This impact is going to be greatest in those overcoming the greatest disease burden, at the youngest age, to contain accumulating morbidity on morbidity. There are frequent policy restatements regretting that hospitals are still only designed to meet the needs of those with acute conditions where life-saving treatment or single interventions are required, but not suited to managing chronicity: little changes. The significant advances in the effective acute medical management of myocardial infarction, stroke, and chronic respiratory illness, the care of trauma patients, and the transition of cancer to a chronic illness for many, are impressive achievements. Sadly the quality of survival of people with chronic, progressive disease does not yet reliably match the standard of their acute care, with increasing evidence in the literature of hidden distress and blighted lives for both patient and family. view source »

The program consists of three workshops with a novel blend of art, science, and practical information, highlighting the need for interprofessional teamwork. Participants were surveyed before and after the workshops on their attitudes toward EOL care. Composite participant scores after workshops demonstrated increased comfort with and knowledge of EOL care topics. The results show that this program has had a positive impact on participants' knowledge, comfort, and collaboration in EOL settings. view source »

[In this mixed-methods study, the authors investigated] the interactions between organisation and culture as conditions for integrated PC in hospital and, if possible, to suggest workable solutions for the provision of generalist PC. Two overall themes emerged: 1) Generalist PC as a priority at the hospital, suggesting contrasting issues regarding prioritisation of PC at different organisational levels; and, 2) Knowledge and use of generalist PC clinical guideline, suggesting that the guideline had not reached all levels of the organisation. Contrasting issues in the hospital'€™s provision of generalist PC at different organisational levels seem to hamper the interactions between organisation and culture --€“ interactions that appear to be necessary for the provision of integrated PC in the hospital. The implementation of PC is also hindered by the main focus being on disease-oriented treatment, which is reflected at all the organisational levels. view source »

There are no international laws that include end-of-life care as part of a healthcare system, and there are no tested international clinical guidelines, and no globally approved best practices. Of most concern, there may be no political will to legislate the right of all persons to the highest-quality end-of-life care. But what would a global champion do? What would be better for individuals dying a cancer death, their families, and their governments? A global champion would commit to establishing a unified and worldwide plan that would include a shared vision, conceptual model and business plan, consensus priorities for care and the corresponding research and quality improvement strategies, and a common lexicon for use in administration, policy setting, education, care, research, and quality improvement efforts. view source »

On average, elderly cancer patients cost Medicare $51,273, $50,274, $62,815, and $50,941 in the last year for breast, prostate, colorectal and lung cancer, respectively. Rural patients cost Medicare about 10%, 6%, 8%, and 4% less on end-of-life care (EOLC) than their urban counterparts for breast, prostate, colorectal, and lung cancer, respectively. Rural cancer patients were less likely to use hospice and home health, more likely to use outpatient and SNF, and they cost Medicare less on inpatient and physician services and more on outpatient care conditional on service use. The lower Medicare spending on EOLC for the rural cancer patients suggests disparities based on place of residence. A future study that delineates the source of the rural-urban difference can help us understand whether it indicates inappropriate level of palliative care and find effective policies to reduce the urban-rural disparities. view source »

These include disease specific prognostic tools, measures of need both symptomatic and psychosocial, and clinical prompts such as "would I be surprised if this patient died in the next 6 months?" An alternative approach based on service use, such as increasing frequency of admissions, or the development of a nominated disease complication such as metastatic disease, may offer an administrative prompt that occurs routinely and requires a response, rather than initiation, by the physician. Once recognised, there remains the task of communicating with the patient and family around issues of worsening disease, disability and death. Yet, our society determinedly avoids discourse around dying, focusing instead on "staying positive" and "fighting hard." The media reinforces this language and focus, offering few stories of those whose illness progresses. This silence is also present in the clinic, and so instead we frequently find it easier to offer a further round of treatment rather than discuss the implications of failure of the last. By failing to engage patients and their families in such discussion until death is imminent, we limit opportunities of patients to realise choices in the final phase of life. view source »

This paper presents the discussion around a case study that demonstrates the evolving area of advanced practice: perinatal PC. Midwives in fact have an important collaborative role to play in ensuring that PC for the baby and family starts as soon as a life-limiting condition is recognised, thus ensuring best care and support are provided for those parents and families for whom pregnancy sadly leads to PC. view source »

This study of the development, implementation and evaluation of an ACP program in a tertiary hospital general medicine service shows that program components designed to overcome specific barriers to ACP discussions was associated with a 75% completion rate of advance care plans among ACP eligible patients who participated in ACP discussions. Dedicated staff training and resources in ACP, employment of an ACP facilitator and ready access to ACP documentation forms were important enabling strategies. Hospital units caring for significant numbers of older patients with limited life expectancy can implement ACP programs that help normalise ACP discussions within routine clinical care. view source »

However, to date, the exact nature of this partnership approach has not been well defined and debate exists about how to make such partnerships work successfully. The findings [of this study] indicate that participants' understanding of partnership working was informed by their identity as a generalist or specialist, their existing rules of engagement and the approach they took towards sustaining the partnership. Considerable commitment to partnership working was shown by all participating teams. However, their working relationship was based primarily on trust and personal liaison, with limited formal systems in place to enable partnership working. Tensions between the cultures of "generalism" and "specialism" also provided challenges for those endeavouring to meet PC need collaboratively in the community. view source »

Protocols from 331 institutions in 25 different states and the District of Columbia were reviewed. There was no mention of how to handle a family's objections in 77.9% (258) of the protocols. Of those that allowed for accommodation, reasons to defer brain death declaration or prolong organ support after brain death declaration included: 1) Religion; 2) Moral objection; 3) Non-specific social reasons; or 4) Awaiting arrival of family. Recommendations to handle these situations included: 1) Seek counsel; (2) Maintain organ support until cardiac cessation; (3) Extubate against the family's wishes; (4) Obtain a second opinion; or (5) Transfer care of the patient to another practitioner or facility. Protocols differed on indications and length of time to continue organ support, code status while support was continued, and time of death. The majority of protocols reviewed did not mention how to handle circumstances in which families object to determination of brain death or discontinuation of organ support after brain death. The creation of guidelines on management of these complex situations may be helpful to prevent distress to families and hospital staff. view source »

For example, more than two thirds of U.S. states have implemented Physician (or Medical) Orders for Life-Sustaining Treatment (POLST/MOLST) programs despite the absence of compelling evidence that they improve patient outcomes. Even less evidence is available to support such well-intentioned private initiatives as the Institute for Healthcare Improvement Conversation Project, the efforts of the Coalition to Transform Advanced Care, the Gundersen Health System's Respecting Choices program, the widely used Five Wishes advance directive of the Aging with Dignity organization, and the services provided by for-profit companies such as Vital Decisions and Common Practice. view source »

There are many reasons why patients may not wish to die at home. Death at home is not necessarily good, and just because a patient did not die at home does not necessarily mean their death occurred in the wrong place. It is important to recognise and accommodate the diversity of patient preferences for place of death, especially in the context of a cultural heterogeneity that is rarely researched or recognised. When home death becomes informatively prescribed there is a risk that it becomes increasingly difficult for patients to express alternative preferences. Patients may be offered choice but be expected to "choose wisely." Rather than reflecting prior and clearly articulated positions, patients' recorded preferences may become co-constructed artifacts of a discussion shaped by professional perspectives and agendas. However well intentioned, these are inevitably influenced by pressure to achieve performance indicators for quality of care. Normalizing home as the best and natural place to die promotes a sense of guilt and failure if death occurs elsewhere. The cultural script about death and dying risks being rewritten to promote ostensive choice as de facto obligation. Given the projected increase in institutional deaths, the hospital needs to be reinvented as a viable alternative and place of excellent care for dying patients and their families. view source »

Most right-to-try laws do not set qualifications for either the health care provider making attestation of terminal illness or the physician recommending experimental treatment. Worse, the door is left open for the unscrupulous or inept to prey on desperately ill patients and their families. Nothing is in place to stop the creation of research "mills" in which interventions with no scientific evidence are prompted as possible cures, which has happened in the field of stem cell-based treatments. Further, the laws absolve companies and physicians from legal liability should be the experimental product cause harm. view source »

In addition, these patients show increased satisfaction, spend less time in the hospital, exhibit markedly decreased rates of depression and spend less time in nursing homes. Currently there are fewer than 8,000 geriatricians in practice nationwide – and that number is shrinking. At the same time, the nation's fastest-growing age group is over 65. Government projections hold that in 2050 there will be 90 million Americans 65 and older, and 19 million people over age 85. The American Geriatrics Society argues that, ideally, the U.S. should have one geriatrician for every 300 aging people. But with the looming shortage of geriatricians, the society projects that by 2030 there will be only one geriatrician for every 3,798 older adults. Why such a growing gap between an increasing number of patients and a decreasing number of doctors required to treat them? Geriatrics is a low-paying field of medicine, even though it requires years of intensive specialization. view source »

Health Service experts gave MPs a withering account of end-of-term care in Britain after a report earlier this year revealed how many patients were dying in agony, without dignity and alone.¹ Professor Irene Higginson, a specialist in palliative care at King's College, London, told MPs that staff "shouldn't walk past the bed." "But one of the problems is that a lot of people don't know what to do or can't recognise that people are dying," she said. The academic warned of a "chronic under-investment" in palliative care training and services, calling the 20 hours tuition that undergraduates receive in five years at medical school "far too little." Professor Mike Richards, chief inspector of hospitals at the Care Quality Commission, said four fifths of hospitals – 80% – had no specialist staff "on hand" at evenings and weekends. Giving evidence to MPs on the public administration and constitutional affairs committee, he said: "The number of people dying in a hospital across different days of the week is exactly the same. I don't think this has been given sufficiently high priority by the Health Service as a whole." He added that some staff tended to "lose compassion" if they were very busy and wards were understaffed. view source »

1. 'Dying Without Dignity: Investigations by the Parliamentary & Health Service Ombudsman into complaints about end of life care,' 25 May 2015. [Noted in Media Watch, May 2015, #411 (p.6)] view source (4.8MB) »

It is provided in a community home, utilizing a network of volunteers and paid staff, in combination with traditional medical hospices, addressing the lack of resources and the burden often accompanying care of the dying. Cantor introduced the idea of social care with the elderly,^1,2 but recently, this concept has been expanded to include end-of-life care. Early research has shown caregiver well-being and bereavement are improved with utilization of a social model hospice. Grassroots, geographic expansion of this community-based model offers one solution to mitigating the growing caregiver crisis. view source »

1. 'Social care: Family and community support systems,' Annals of the American Academy of Political & Social Science, 1989;503;99-112. view source »

2. 'Family and community: Changing roles in an aging society,' The Gerontologist, 1991;31(3):337-346. view source »

Shocking reports of hospital complaints in the U.K. relate to care of the dying,¹ suggesting a real deficit of palliative care knowledge and attitudes nearly 50 years after Cicely Saunders established St Christopher's Hospice ... out of dismay for care in hospital. And why are half of those who die in Europe, America and much of Asia still ending their days in hospital,² when we keep hearing that so many want to spend their last weeks at home? The reasons are many, a toxic mix of culture, ambivalence and expectation. Society remains anxious about death, convinced of immortality and has developed huge expectations about the power of doctors and unlimited medicine. Care of the dying used to be the bread and butter of family doctors – why and where has that confidence gone? At the same time, families are not available or confident to care, community services are fragmented, we do not talk about dying and we do not prepare or plan ahead. The end result of these contextual factors is that thousands of people are admitted to hospital every day, and culture and systems make it very difficult to escape. Studies have suggested that many who are in hospital could be supported elsewhere – however, this depends on citizens, health services and social care working much more cohesively together. view source »

1. 'Dying Without Dignity: Investigations by the Parliamentary & Health Service Ombudsman into complaints about end of life care,' 25 May 2015. [Noted in Media Watch, May 2015, #411 (p.6)] view source » 4.8 MB

2. 'Where do people die? An international comparison of the percentage of deaths occurring in hospital and residential aged care settings in 45 populations, using published and available statistics,' International Journal of Public Health, 2013;58(2):257-267. [Noted in Media Watch, 17 August 2013, #300 (p.10] view source »

Results of the descriptive analysis indicated that patients strongly preferred their physicians to listen to their distress and concerns (96%), to assure them that their painful symptoms would be controlled (97.1%), and to explain the status of their illness and the physical symptoms that would likely occur in the future (95.1%). Multiple regression analyses identified the factors associated with these preferences: telling patients to prepare mentally and informing them of their expected life expectancy were associated with cancer site; sustaining hope was associated with cancer site and children; and, empathic paternalism was associated with duration since cancer diagnosis. view source »

This is not just about adding "family" to the list of those who need to be consulted about end-of-life care decision-making, although doing so may be relevant. Relational care is about finding ways to connect to people, and enabling them to continue to be part of and, perhaps, forge new, meaningful relationships. A focus on tools and protocols may help reframe how we think about caring for the dying, and even healthcare more broadly, but they in themselves are neither care nor valid indicators of end-of-life care, if we accept the importance that service users attribute to relational aspects of their care. view source »

When a professional guardian is faced with decisions concerning life-sustaining treatment, substituted judgment may be impossible, and reports have repeatedly suggested that guardians are reluctant to make the decision to limit care. Physicians are well positioned to assist guardians with these decisions and safeguard the rights of the vulnerable persons they represent. Doing so effectively requires knowledge of the laws governing end-of-life decisions by guardians. However, physicians are often uncertain about whether guardians are empowered to withhold treatment and when their decisions require judicial review. To address this issue, the authors analyzed state guardianship statutes and reviewed recent legal cases to characterize the authority of a guardian over choices about end-of-life treatment. They found that most state guardianship statutes have no language about end-of-life decisions. The authors identified 5 legal cases during the past decade that addressed a guardian's authority over these decisions, and only 1 case provided a broad framework applicable to clinical practice. view source »

The Institute became interested in the topic while researching the FDA's policy on emerging medical technologies. The institute heard stories about how time-consuming it was for physicians to complete the expanded access form, as well as the 2 to 4 months that it often took for such requests to be approved, explained Kurt Altman, the institute's director of national affairs and special counsel. Yet bioethicists question whether such laws offer anything more than "the creation of false hope."¹ Individual patients with a serious or life-threatening illness can already request investigational drugs through the FDA's expanded access program. view source »

1. 'Should patients in need be given access to experimental drugs?' Expert Opinion on Pharmacotherapy, 2015;16[9]:1275-1279. The authors discuss the impulse to rescue individual patients facing dire diseases and underscore the ethical questions that such rescue efforts raise. view source »

Institutional representatives appointed to the NCCN Palliative Care Guidelines Panel were asked to complete an online survey in the spring of 2014. The survey focused on availability of PC services, screening and referral practices for PC, PC education, and quality improvement programs. The survey was completed by representatives from 21 of 25 NCCN member institutions (84%). A majority routinely provides PC services via interdisciplinary teams; 52% routinely inform patients of the availability, elements, and benefits of PC. The guidelines are most often used to guide clinical practice; only 10% reported using the guidelines to formally screen for PC needs and/or make referrals to PC specialists. Among the 62% of institutions that screen any patients using any available criteria, when a patient screens positive for PC needs, a referral to a PC specialist is made less than half the time. Implementation of PC guidelines is incomplete and various aspects of the guidelines, such as the recommendation to screen all patients for PC needs, are applied inconsistently. Despite this, most institutions provide PC services in a manner consistent with the guidelines. Greater implementation of the guidelines' recommendations is needed. view source »

This study describes the place of death of people who died from diseases indicative of palliative care need in 14 countries [i.e., Belgium, Canada, the Czech Republic, England, France, Hungary, Italy, Mexico, the Netherlands, New Zealand, South Korea, Spain (Andalusia), the U.S. and Wales], the association of place of death with cause of death, socio-demographic and healthcare availability characteristics in each country and the extent to which these characteristics explain country differences in the place of death. 13% (Canada) to 53% (Mexico) of people died at home, and 25% (the Netherlands) to 85% (South Korea) died in hospital. The strength and direction of associations between home death and cause of death, socio-demographic and healthcare availability factors differed between countries. Differences between countries in home versus hospital death were only partly explained by differences in these factors. The large differences between countries in and beyond Europe in the place of death of people in potential need of palliative care are not entirely attributable to socio-demographic characteristics, cause of death or availability of healthcare resources, which suggests that countries' palliative and end-of-life care policies may influence where people die. view source »

They argue that while it would be ethically inappropriate to continue to devote scarce acute care resources to such patients in a hospital setting, it may not be ethically inappropriate for patients to receive these resources in certain other settings. Thus, if a family insists on continuing to care for their brain-dead loved at their home, we should not, from a policy perspective, interfere with the family's wishes. The author's also argue that healthcare professionals should make some effort to facilitate the transfer of brain-dead patients to these other settings when families insist on continued treatment despite being informed about the lack of any potential for recovery of consciousness. Their arguments are strengthened by the fact that patients in a persistent vegetative state, who, when correctly diagnosed, also have no potential for recovery of consciousness, are routinely transferred from hospitals to nursing homes or long-term care facilities where they continue to be ventilated, tube fed and to receive other supportive care. view source »

Mostly, we distract ourselves with things of the moment. But in our rational moments we make preparations. We write advance directives. We execute durable powers of attorney. We give instructions to loved ones: "No tubes, no machines." That's the wrong approach... All this stuff we put together doesn't guarantee what we say we want will actually happen or that we'll have what we'd call a "good death" – what you would think of as a good death for you. view source »

This descriptive, naturalistic phenomenological, qualitative study utilized in-person interviews to explore executives' opinions and beliefs. The sample consisted of 14 individuals in the roles of medical center directors, chiefs of staff, chief medical officers, hospital administrators, hospital risk managers, and regional counsel in Arkansas, Louisiana and Texas. Hospital executives acknowledged that EOL care was a very important issue, and more attention should be paid to it in the hospital setting. Their comments and suggestions for improvement focused on 1) Current EOL care; 2) barriers to changing EOL care; and, 3) enhancing provision of EOL care in the hospital setting. The findings of this study suggest that hospital executives, although key change agents, may have insufficient EOL information to implement steps toward cultural and infrastructural change and should therefore be included in any EOL discussions and education. view source » (280 KB)

Various approaches to capturing data on the financial costs of care-giving at the end of life were noted; however, no single tool was identified with the sole purpose of exploring these costs. The majority of approaches used structured questionnaires and were administered by personal interview, with most studies using longitudinal designs. Calculation of costs was most often based on recall by patients and family caregivers, in some studies combined with objective measures of resource use. While the studies in this review provide useful data on approaches to capturing costs of care-giving, more work is needed to develop methods which accurately and sensitively capture the financial costs of caring at the end of life. view source »

International experts ... rated a list of indicators on integration over three iterative rounds under five categories: 1) Clinical structure; 2) Processes; 3) Outcomes; 4) Education; and 5) Research. After three rounds of deliberation, the panellists reached consensus on 13 major and 30 minor indicators ... which may be used to identify centers with a high level of integration, and facilitate benchmarking, quality improvement and research. view source »

In analyses, self-reported presence of unfinished business and the severity of distress due to unfinished business were both found to be associated with poorer bereavement outcomes. However, after controlling for potential confounds, distress related to unresolved issues with the deceased emerged as a more robust correlate of these outcomes. Qualitative responses were categorized, and the type of reported unfinished business was not significantly related to the degree of unfinished business distress or other bereavement outcomes. These findings provide preliminary justification for bereavement interventions that aim to ameliorate distress related to unresolved relational issues with the deceased. view source »

The study found doctors tended to overestimate survival. The very measure of a doctor lies in their predictive abilities, their grasp of the crystal ball: "How long have I got, doctor?" The Corpus Hippocratum of early Greek medicine underlined just that: "I hold that it is an excellent thing for a doctor to practise forecasting. For indeed, if he discover and declare unaided by the side of his patients their present, past and future circumstances, he will be able to inspire greater confidence that he knows about illness, and thus people will decide to put themselves in his care." Why is it so difficult to prognosticate? Every patient is different, every disorder is different, every disorder within a disorder is different. People are unpredictable, their illness even more so. But there exist other subtleties that are harder to admit to. view source »

1. 'A systematic review of physicians' survival predictions in terminally ill cancer patients,' British Medical Journal, 24 July 2003. view source »

Important environmental factors external to the caregiver may contribute to a widowed person's bereavement adjustment. One such environmental factor is the end-of-life care that the patient receives. For example, research has shown that the rate of major depressive disorder increases significantly among bereaved caregivers following deaths that involve aggressive life-prolonging care compared with deaths that do not involve such care. Given caregivers' heightened vulnerability to psychological distress and their expanding role in the provision of care for terminally ill patients, there is a human, clinical, and public health interest in determining ways in which end-of-life care might improve the mental health of spousal caregivers. view source »

Three key themes emerged: 1) "lessons learned"; 2) "uncertainties and ambivalences"; and, 3) "the future." Critical care practitioners reported life after the LCP ... often involved various clinical ambivalences, uncertainties and inconsistencies in the delivery of end-of-life care (EOLC), especially for less experienced practitioners. They had "become accustomed" to the components of the LCP, which still guide them in principle to ensure quality EOLC. The LCP's format was perceived to be a useful clinical tool, but was criticized as a "tick-box exercise," and for lacking family involvement. Despite experienced practitioners being able to deliver quality EOLC without using the LCP, junior nursing and medical staff need clear guidelines and support from experienced mentors in practice. Evidence-based guidelines related to family involvement in EOLC planning in critical care settings are needed to avoid future controversies. view source »

1. 'Review of Liverpool Care Pathway for dying patients,' Department of Health, 2013. [Noted in Media Watch, 22 July 2013, #315 (p.6)] view source »

They argue patients should feel able to discuss whether there are simpler, safer options that are right for them. But experts warn they must not change treatment without medical advice. The Academy of Medical Royal Colleges says there is growing evidence that pressure for doctors to "do something" at each consultation has led to patients sometimes receiving treatments that are of little or no value. And the report suggests a culture of "more is better" means some individuals are being over-diagnosed – labelled with conditions that may in the end do them little harm. view source »

1. 'Choosing Wisely in the U.K.: the Academy of Medical Royal Colleges' initiative to reduce the harms of too much medicine,' British Medical Journal, 12 May 2015. The authors explain how and why a U.S. initiative to get doctors to stop using interventions with no benefit is being brought to the U.K. view source »

While these same imperatives and benefits exist for discussing goals of care and end-of-life, communicating with patients about these topics can be particularly daunting. While clinicians receive extensive training on how to identify and treat illness, communication techniques, especially those centering around emotion-laden topics such as end-of-life care, receive short shrift medical education. Fortunately, communication techniques can be taught and learned through deliberate practice, and in this article, we seek to discuss a framework, drawn from published literature and our own experience, for approaching goals-of-care discussions in patients with cardiovascular disease. view source »

A study showed that less than 25% of foundation year 1 doctors are aware that, after qualifying, they will be responsible for a dying patient and experience patient death in the course of their duties. Young doctors facing the death of a patient for the first time experience a similar range of negative feelings as senior doctors, such as sadness, guilt, disgust, and confusion, with a sense of self-blame because of a perceived professional failure to save lives. Trainees are not always effectively taught how to speak about a patient's death. Even more experienced doctors express the belief that showing negative feelings associated with patients is a sign of weakness. They are afraid to be perceived by their peers and supervisors as being too sensitive for this profession. view source »

Parents preferred indirect strategies when their child avoided talking or when they considered the conversation as threatening for the child, or for themselves. Even if the parents show an intense involvement in the care and support of their child; they can still have difficulty acknowledging the child's perspective. An inability to take into account the child's perspective was largely due to the parents' own struggle to cope with loss. Whether or not the voice of children approaching the end-of-life is heard, often depends on their parents' ability to give them a voice. Professional caregivers have a difficult task in supporting parents in giving their child his or her voice, while at the same time preserving their, and their parents' ability to cope. view source »

They have declined because the word "rationing," and unrelated concepts such as cost-effectiveness analysis, have been replaced by terms – "parsimony," "value," and "CER" [comparative effectiveness research] – that are not burdened by emotional and historical baggage. Sometimes the best way to promote healthy moral debate is to turn to new words that don't carry the burden of past debates. view source »

However, state laws won't allow non-immediate family members to make medical decisions on behalf of the patients, unless the patients have specifically named them in a living will or other legal document, said lead author Dr. Andrew Cohen, a postdoctoral fellow at the Yale University School of Medicine in New Haven, Connecticut. This could cause delays and confusion over crucial medical care needed to treat a personal health crisis, he said. And, under current laws, it's possible that a family member with little to no participation in a person's day-to-day life could end up responsible for making life-and-death medical decisions on that person's behalf, according to the researchers. view source »

1. 'Patients with next-of-kin relationships outside the nuclear family,' Journal of the American Medical Association, 2015;313(13):1369-1370. For patients who lose capacity and have no legally appointed surrogate decision maker, most states have laws that specify a hierarchy of persons who may serve as same. view source »

Management principles are the same whether the patient is at home or in a healthcare institution. However, death in an institution requires accommodations that may not be customary to ensure privacy, cultural observances, and communication. In anticipation of the event, inform the family and other professionals about what to do and what to expect. Care does not end until the family has been supported with their grief reactions and those with complicated grief have been helped to get care. view source »

Extract from Medscape feature
Many clinicians have little or no formal training in managing the dying process or death. Families usually have even less experience or knowledge about death and dying. From media dramatizations and vivid imaginations, most people have developed an exaggerated sense of what dying and death are like.

The results focus on the students' common themes that include 1) unknown territory; 2) support; 3) role of staff; 4) role of immersion learning in palliative and end-of-life care; 5) facing death and dying; and, 6) clinical pearls. This project humanizes dying and death, solidified student realization that dying is a part of life and what an honor it is to be a part of the care process that alleviates pain, increases comfort, values communication, and human connections. Students report new found skills in patient care such as the 1) importance of physical touch; 2) significance of communication at the end of life for the patient, family, and staff; 3) the value of authenticity and sincerity that comes from being comfortable with oneself, which allows silence to communicate caring; 4) connection with and awareness of the person (rather than their terminal illness) and their family; and, 5) the importance of speaking with patients and their families about end of life plans in advance. Although this is a time intensive experience for the faculty member and the hospice home staff, the depth of learning experienced by the students and opportunities to advance medical education in death and dying are well worth the efforts. view source »

First, traditional advance directives are often narrowly focused on treatment preferences that are difficult to apply in many clinical situations. The second approach, facilitated advance care planning, is resource intensive and thus difficult to scale up to meet increasing demand. The authors propose two interrelated strategies to create the next generation of advance care planning tools: 1) leveraging web-based technologies to create online interventions; and, 2) using the science of user-centered design to ensure that advance care planning meets the needs of patients, families, and clinicians. view source »

For instance, men will need personal supports and services in frail old age for an average of 18 months. Women typically will need such support for three years before they die. And younger people with disabilities may need some level of personal assistance for decades. None of these people are dying (at least no more than the rest of us). They are living. view source »

While specialist palliative services have their advocates, adding yet another element to an already fragmented, often complex care paradigm will be a challenge. Instead the authors propose a more holistic, patient-centred approach based on elements fundamental to palliative and best care practices generally and integrated as needed across the entire illness trajectory. To support this approach they review the concept of primary palliative care competencies, identify vulnerability specific to those living with advanced COPD (an exemplar of chronic lung disease), and describe the need for care plans shaped by patient-centred communication, timely palliative responsiveness, and effective advance care planning. A costly systemic issue in the management of chronic lung disease is patients' increasing dependency on episodic emergency room care to deal with preventable episodic crises and refractory dyspnea. The authors address this issue as part of a proposed model of care that provides pro-active, collaborative case management and the appropriate and carefully monitored use of opioids. view source »

Content analysis highlighted three main areas of stressors: 1) systematic challenges related to managing large, emotionally demanding caseloads within time constraints; 2) patient factors, such as addressing patients' mutable needs, managing family dynamics, and meeting patient and family demands and expectations; and, 3) personal challenges of delineating emotional and professional boundaries. Engaging in healthy behaviors and hobbies and seeking emotional support from colleagues and friends were among the most common methods of coping with stressors. In terms of programmatic topics, PCCs desired training in mind-body skills (e.g., breathing, yoga, meditation), health education about the effects of stress, and cognitive strategies to help reduce ruminative thoughts and negative self-talk. A majority of clinicians stressed the need for brief strategies that could be readily integrated in the workplace. view source »

The authors explore the views of professionals who, during the hospital implementation of the Italian version of the LCP), voiced or showed concerns towards it. A total of 12 categories were identified, referring to four topics: the Implementation Programme, the LCP clinical documentation, the hospital environment, and the educational and professional background of hospital healthcare staff. Issues raised by participants concerned both "real" characteristics of the LCP and a misinterpretation of the LCP approach and clinical documentation. Furthermore, difficulties were reported which were not linked to the programme but rather to end-of-life care. A more comprehensive approach to professional training in palliative care is needed and may envisage the development of new interventions aimed at improving the quality of care throughout the illness trajectory. view source »

They suggest how a do-not-escalate-treatment (DNET) order can be helpful in such situations when the usual approaches to withholding or withdrawing care are not acceptable to the surrogate. The authors define a DNET order, explain when it might be useful, and discuss how it can facilitate a humane, negotiated resolution of differences. view source »

And the number of people with depression in the last year of life increased by more than 26%. All that happened as guidelines and quality measures for end-of-life care were developed, the number of palliative care programs rose and hospice use doubled between 2000 and 2009. "We've put a lot of work into this and it's not yielding what we thought it should be yielding. So what do we do now?" asked Dr. Joanne Lynn, a study author who directs the Center for Elder Care & Advanced Illness at the Altarum Institute. The study looked at 7,204 patients who died while enrolled in the Health & Retirement study, a survey of Americans over age 50. view source »

1. 'Approaching Death: Improving Care at the End of Life,' Institute of Medicine, National Academy of Sciences, Washington, December 1998. view source »

2. 'Symptom Trends in the Last Year of Life from 1998 to 2010: A Cohort Study,' Annals of Internal Medicine, 3 February 2015. view source »

Such planning might include will making, advance care planning, enduring guardianship, organ donation and, for some, decisions about the where and the how of end-of-life care. People with intellectual disability, however, are not afforded similar opportunities to learn or plan for dying... The aim of this paper is to outline current thinking around the need for people with intellectual disability to learn about and understanding dying and death. view source »

"There was great angst among reviewers about medication discontinuation of any kind," she said of a commentary they eventually published...¹ "They felt it would be equivalent to saying to a patient, 'You're not worthy to be on this medication.'" view source »

1. 'Managing co-morbidities in patients at the end of life,' British Medical Journal, 2004; 329(7471):909-912. view source »

First, they show how clinicians can re-frame helplessness as a self-barometer indicating their level of engagement with a patient. Second, they discuss how to shift deliberately from hyper- or hypo-engagement toward a constructive zone of clinical work, using an approach summarized as "RENEW" – recognizing, embracing, nourishing, embodying, and weaving – to enable clinicians from all professional disciplines to sustain their service to patients and families. view source »

Sixty-two per cent (770/1234) had no concerns regarding the use of ICPs. Areas of concern included incorrect use and implementation of the ICP, poor communication with families, junior level staff making decisions and insufficient education and support. There was strong support for using ICPs for caring for people in the last days to hours of life. ICPs were viewed as supporting high-quality patient-centred holistic care. Given the recommendations of the More Care Less Pathway report,¹ those that develop the guidance and support that replace the LCP need to incorporate the aspects of this that have resulted in the benefits seen by professionals within this survey, but also learn from the instances where ICPs have failed to prevent poor care, or worse, have contributed to it. view source »

1. 'More Care, Less Pathway: Review of Liverpool Care Pathway for Dying Patients,' Department of Health, July 2013. [Noted in Media Watch, 22 July 22 2013, #315 (p.6)] view source »