To better understand why PC is an important issue in the current debate about health care reform, the authors review landmark legal cases in the area of end-of-life care. They also discuss the role of PC in conversations in the current health care climate and conclude by emphasizing the importance of integrating PC into the standard medical curriculum. The authors predict that PC will be accepted in the U.S. as a much-needed and desirable field of medicine. Getting there, however, will require a multifaceted approach including payment reform, encouraging an open conversation among the U.S. public and training physicians to offer the best possible care and guidance until a patient's last breath. view source »

"Advance planning, management of emotional distress, counseling the patient and caregivers, attention to psychological and social needs, personalized revision of care plans – all of this involves hearing," said Barbara E. Weinstein ... of Health Sciences Doctoral Programs at the City University of New York Graduate Center. "Hearing and communication are so critical at the end of life because at this stage, what people are left with is the need to communicate with family, physicians, and other caregivers. Doctors are so concerned with patient-centered care, but they often have not been educated to appreciate the role that better hearing can play in that care." view source »

126 participants (66 patients; 60 family members) responded to the PDQ; 99% indicated the summaries were accurate; 97% permitted the summary to be placed in the chart; 93% felt the information was important for health care providers to know; and 99% would recommend the PDQ for others. 137 health care providers completed 293 evaluations of individual PDQs; 90 % indicated that they learned something new from it; 64% that they were emotionally affected by it; 59% that it influenced their sense of empathy; and 44% that it influenced their care. view source »

The literature expresses concerns about the varied and non-uniform approach to palliative care training across medical schools. The authors recommend the development of more palliative training assessment tools in order to aid in the standardization of curriculum involving end-of-life care. In addition, increased exposure to dying patients will aid students in building comfort with palliative care issues. Such a goal may be accomplished through required clerkships or other similar programs. view source »

An overarching theme was of continuity of care that divided into personal, organisational, and informational continuity. Large numbers and changes in care staff diluted personal continuity and failure of the GPs to visit was viewed negatively. Family carers had low expectations of informational continuity, finding information often did not transfer between secondary and primary care and other care agencies. Organisational continuity when present provided comfort and reassurance, and a sense of control. The requirement for continuity in delivering complex end-of-life care has long been acknowledged. Family carers in this study suggested that minimising the number of carers involved in care, increasing or ensuring personal continuity, and maximising the informational and organisational aspects of care could lead to a more positive experience. view source »

The controversy exists, partly, in disagreements between families and physicians about the patient's best interests, the goals of treatment and the ends of medicine. In everyday clinical practice, physicians are under pressure to make decisions whether or not to offer futile treatment and how to communicate their decisions with the family. However, in some cases there are disagreements between healthcare providers and patients' family about the course of action. The inevitability of human death, limitations of medical science, the scarcity of health resources, and various socio-cultural issues shape decisions regarding end-of-life care in general and medical futility in particular. In an era with an aging population and escalating healthcare costs, the futility debate has become the object of extended critical attention. Currently, except in some hospitals in the U.S., there is a lack of policy or regulation in dealing with medical futility. It is crucial to develop futility policies which guide healthcare professionals on the process for decision making on the treatment options, and when it is morally permissible to withhold or withdraw life-sustaining treatment. Such policies would be very instrumental in decreasing disagreement. view source » 240 KB

…developed by the Robert Wood Johnson Foundation's critical care end-of-life peer work group. The authors determined 90 barriers, of which 46 related to physician attitudes, 24 to physician knowledge and 20 to physician practice. Stronger evidence was found for physicians' lack of communication training and skills, their attitudes towards death in the ICU and their focus on clinical parameters and lack of confidence in their own judgment of the patient's true condition. view source » 360 KB

However, the guidelines state that end-of-life decisions should be made for patients who do not improve with neuro-rehabilitation within a finite period, and they recommend withdrawal of clinically assisted nutrition and hydration (CANH). This withdrawal is deemed necessary because patients in PDOC can survive for years with continuation of CANH, even when a ceiling on medical care has been imposed, i.e., withholding new treatment such as cardiopulmonary resuscitation for acute life-threatening illness. The authors conclude that these guidelines are not only harmful to patients and families, but they represent the means of non-consensual euthanasia. The latter would constitute a gross violation of the public's trust in the integrity of the medical profession. view source » (350 KB)

1. 'Prolonged disorders of consciousness: National clinical guidelines,' The Royal College of Physicians, December 2013. Endorsed by the Association of British Neurologists, Association for Palliative Medicine, British Society of Rehabilitation Medicine, Chartered Society of Physiotherapy, College of Occupational Therapists, Society of British Neurological Surgeons, and Society for Research in Rehabilitation. [Noted in Media Watch, 16 December 2013, #336 (p.6)] view source » (1 MB)

Approximately 35% of newspaper reports referred to do not attempt cardiopulmonary resuscitation [DNACPR] decisions apparently made without adequate patient and/or family consultation. "Ageism" was referred to in 9% of articles (mostly printed 2000-2002); and, "discrimination against the disabled" in 8% (mostly from 2010-2012). Only five newspaper articles (2%) discussed patients receiving CPR against their wishes. Eighteen newspaper reports (5%) associated DNACPR decisions with active euthanasia. Regarding DNACPR decision-making, the predominant theme was perceived lack of patient involvement, and, more recently, lack of surrogate involvement. Negative language is common, and especially when decisions were presumed unilateral. view source »

Understanding the transition from the point of view of patients and family members is critical in increasing use of hospice care and decreasing "late referrals." Examining narratives about transitioning to hospice reveals two insights. First, the referral is one highly variable element of a more complex process better conceptualized as a transition. Transitions may be 1) provider-driven or 2) patient/family-driven. Some patients and families play a very active role in this transition, including self-referring to hospice. Second, the style of provider referrals is commonly remembered as being very negative. Negative referrals tend to draw on a cultural meaning of hospice as "giving up" or "choosing dying," while positive referrals conceptualize hospice as a medical and psychosocial strategy that is advantageous for patients and families. Understanding referral as a discrete, but critical component of a longer strategy for transitioning to hospice care, should lead providers to carefully plan when and how they present hospice care to patients. Understanding the spectrum of patient and family perspectives can also improve providers' ability to customize their referrals and the likelihood that patients will transition to hospice care if and when it would benefit them. view source »

As part of a larger study examining preferences and priorities for end of life care, the authors investigated the extent to which care homes are chosen as the least preferred place of death, and the factors associated with this negative preference. Their results suggest it might be difficult to promote care homes as a good place to die. This is an urgent research area in order to meet needs and preferences of a growing number of older people with chronic, debilitating conditions across Europe. view source »

Specifically, they describe a deliberative process that resulted in a charter for a public health approach to dying, death, and loss. Modeled after the World Health Organization's 1986 Ottawa Charter, their charter includes a call to action. It has the potential to bring about significant change on local, societal, and global levels as exemplified by four projects from three countries. Public health and end-of-life services and organizations need to form partnerships with the community to develop a public health approach to dying, death, and loss. view source »

The high-level ethical principles are the same for all people, in all settings, but differences in clinical and personal circumstances make it essential that all CPR decisions are made on an individual basis. How these individual decisions are made is also guided by law, which differs between adults and children, and differs in England & Wales, in Scotland, and in Northern Ireland. For example, a central tenet of the mental capacity legislation in England & Wales is "best interests" and in Scotland it is "benefit." These terms ... for the purposes of this guidance ... are used interchangeably in parts... This guidance also provides a framework to support decisions relating to CPR and effective communication of those decisions. It also highlights relevant legal requirements and differences. view source (600 KB) »

This study aimed to systematically explore hospital-based nurses' accounts of the transition to palliative care, and the potential role of nurses in facilitating more effective palliative care transitions. Four significant themes emerged: 1) professional dynamics and the roles played by nurses in initiating the transition to palliative care; 2) the value of nurses' informal interactions in timely and effective transitions; 3) the emerging challenge of managing task-oriented nursing versus intense emotional nursing work at the point of medical futility; and, 4) the emotional burden experienced by nurses within this clinical context. view source »

The results suggest that cost savings might be available if community-based support were made more widely available to help people to die in their own homes, where that was their preference. Given the finite resources available for health care, it is important that there is an understanding of the costs of end-of-life care. However, acquiring good-quality data surrounding costs for palliative care is challenging, especially as care services for those at the end of life are fragmented across many different providers. "This work demonstrates how crucial it is that we develop better ways to understand resource use in everyday care. This would help care services to be responsive to the needs of those near to death, so they can provide support and care in the most appropriate setting for the individual." Theo Georghiou, Senior Research Analyst, Nuffield Trust and report author. view source »

Extract from Nuffield Trust report

A key message of this work is that it is essential that we develop better ways to understand resource use in everyday care. National Health Service England's palliative care funding projects are an important manifestation of this aim with respect to end-of-life care.

In total over 60 initiatives across 13 European countries were identified. These initiatives were mapped by level of change – that is at the national, regional, organisational, team or individual level, with many targeting more than one level. Unfortunately not possible as part of this mapping activity, was an evaluation to examine if any of these initiatives successfully translated into sustained knowledge or practice change. What is vital for improving end-of-life care for residents and families in long term care is for clinicians, researchers and policy makers to engage, not only in the generation of knowledge by engaging in research and knowledge dissemination from the publication of results in academic journals, but also the transfer of research-based knowledge into a form that can be used. view source »

1. 'European Association of Palliative Care Taskforce on Palliative Care in Long Term Care Settings for Older People,' European Journal of Palliative Care, 2013;20(5):251-253. [Noted in Media Watch, 16 September, 2013, #323 (p.11)] view source »

This has now become demographically imperative. When considering these basic and more complex needs of socially diverse populations in the provision of care at the end of life, and during bereavement, we must hold two lenses at the same time; to understand and serve the needs of specific communities requires us to apply a framework of equity of provision. At the same time, however, it is important we do not lose sight of the individuals and families in front of us, whose needs and concerns may not conform to our conscious or unconscious biases. Cross-cultural experiences may also enhance the rich repertoire of the healthcare professional with different and creative ways to ease the dying process for patients, families and staff. Accepting this invitation enables the growth that is the cornerstone of cross-cultural competence and communication skills. At the end of life, an individualised approach to care with a focus on quality is paramount for any patient, regardless of their ethnic or cultural background. At the end of life, an individualised approach to care with a focus on quality is paramount for any patient, regardless of their ethnic or cultural background. view source »

On the basis of recent attendance patterns we are meant to identify patients at high risk of being admitted and work out a plan, as the NHS [National health Service] specification puts it, to "identify factors which could have avoided the admission or future A&E (accident and emergency) attendance with a view to taking appropriate action to prevent future episodes." The bias is obvious: no equivalent specification pays doctors for admitting patients to hospital when it is the best place for them. But millions of pounds are being spent on the illusory idea that millions more pounds can be saved if GPs make a plan for patients that avoids admitting so many to hospital. This is patently nonsense; evidence has shown that this kind of "case management" doesn't reduce admissions. And where is the evidence of safety or the search for harms? How do we know that GPs’ time is being well used? We don’t. We are all living longer, with more long term conditions, but (as if planned in a parallel universe) the number of NHS beds is going down. We need what we've always needed: highly trained GPs with the professional freedom to listen and respond tactfully when people want or need to talk about death. view source »

Extract from British Medical Journal article

Tickbox forms always insist on binary answers. But life is complicated and messy, and being ill, alone, or scared can make us vulnerable. Talking about death is not a bad thing to do, but when health professionals are driven by a policy designed to save money rather than serve patients, we hardly deserve our patients' trust.

1. 'Elderly patients asked during home visits by nurses: Would you want to be resuscitated?' The Daily Telegraph, 20 August 2014. [Noted in Media Watch, 25 August 2014, #372 (p.9)] view source »

The objectives of this paper are to: describe the development of the International Charter for Human Values in Healthcare, which delineates core values, articulate the role of skilled communication in enacting these values, and provide examples showing translation of the Charter's values into action. The authors' identified five fundamental categories of human values for every healthcare interaction – compassion, respect for persons, commitment to integrity and ethical practice, commitment to excellence, and justice in healthcare – and delineated sub-values within each category. They have disseminated the Charter internationally and incorporated it into education/training. view source »

Patients are entitled to choose for themselves, and respect for patient autonomy (self-determination) is now dominant. Shared decision-making, an approach whereby doctors and patients make decisions together using the best available evidence, extends the respect for patient autonomy beyond the narrow legalistic confines of informed consent. Patient autonomy is respected and patients have the opportunity to engage with the healthcare process. Shared decision-making has become more prominent partly because there is an ethical imperative to involve patients properly in decisions about their care, and partly because there is increasing evidence that this approach has benefits. view source »

This philosophical departure from curative or life-prolonging care means that transitioning patients can be problematic, with recent work suggesting a wide range of potential emotional, communication and relational difficulties for patients, families and health professionals. Yet, we know little about terminally ill patients' lived experiences of this complex transition. [In this article] ... the authors explore their embodied and relational experiences of the transition to inpatient care, including their accounts of an ethic of resilience in pre-palliative care and an ethic of acceptance as they move towards specialist palliative care. Exploring the relationship between resilience and acceptance reveals the opportunities, as well as the limitations, embedded in the normative constructs that inflect individual experience of this transition. This highlights a contradictory dynamic whereby participants' experiences were characterised by talk of initiating change, while also acquiescing to the terminal progression of their illness view source »

More emphasis on incorporating family caregivers in EOL [end-of-life] communication is needed from clinical, research, and training perspectives. While patients and family caregivers [i.e., study participants] had wide spectra of preferences, patients significantly preferred disclosure, direct disclosure by a physician, and palliative care options. Family caregiver predictions were similar to PP with regard to terminal disclosure, but significantly different with regard to family involvement in the disclosure process and EOL choices. The concordances of PP and FCP [family caregiver preferences], and those of PP and FCPPP [family caregiver predictions of patient preferences], were poor. The concordances of FCP and FCPPP were fair to moderate. Discrepancies between PP and FCP and between PP and FCPPP were associated with dysfunctional family communication. view source »

ADs [advance directives] are not uniformly perceived to be helpful... To improve EoL quality, these factors need to be considered. Of [survey] respondents, 65.8% rely on family to make EoL decisions most or all of the time, while 80.7% feel family members are rarely or only sometimes in appropriate emotional states to make such choices. A significant number of practitioners felt comfortable making decisions without family input at all, more so with experienced practitioners as compared with those in practice for less than 15 years. Of the practitioners [who responded], 59.6% rely on ADs most or all of the time, only 61.1% agree or strongly agree that ADs are useful, and only 56.3% feel families follow their loved one's ADs most or all of the time. A patient's family support or ability to pay for aftercare was rarely or never considered important by 80.1% of the practitioners, despite 85.1% reporting that quality of life post-illness/injury was important most or all of the time. view source »

In fact, continuous messaging of the value of palliative care services is needed to sustain our discipline; this requires regularly evaluating the quality of our care. As the reimbursement mechanisms for health care in the U.S. shift from fee-for-service to fee-for-value models, palliative care will be expected to report robust data on quality of care. We must move beyond demonstrating to our constituents (including patients and referrers), "here is what we do," and increase the focus on "this is how well we do it" and "let's see how we can do it better." It is incumbent on palliative care professionals to lead these efforts. This involves developing standardized methods to collect data without adding additional burden, comparing and sharing our experiences to promote discipline-wide quality assessment and improvement initiatives, and demonstrating our intentions for quality improvement on the clinical frontline. view source »

However, the application of the "best interests" test, and its meaning, remains unclear in this context. To shed light on this emerging body of jurisprudence, this article analyses the Australian superior court decisions that consider an adult's best interests in the context of decisions about life-sustaining treatment. The authors identify a number of themes from the current body of cases and consider how these themes may guide future decision-making. After then considering the law in the U.K., they suggest an approach for assessing best interests that could be adopted by Australian Supreme Courts. The authors argue that the suggested approach will lead to a more structured and systematic decision-making process that better promotes the best interests of the patient. view source »

In this article, the authors aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions 1) What is palliative care and what is hospice care? 2) What are the palliative care needs of neurology patients? 3) Do neurology patients have unique palliative care needs? (4) How can palliative care be integrated into neurology practice? They cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. The authors conclude by suggesting areas for future educational efforts and research. view source »

While these concepts have been recognized and included in practice guidelines – for example, those established by the [U.S.] National Consensus Project on Palliative Care¹ – they are often more an ideal than a reality. But the practice arena is far ahead of the policy world. Support for family caregivers has largely been absent from policy discussions of palliative care, which focus on professional, clinical, regulatory, and financial issues. As palliative care moves "upstream," that is, earlier in the course of illness, and into the "mainstream," as part of standard medical care, it is essential to bring family caregivers into the discussion, hear their concerns, and develop meaningful policy responses. view source »

1. 'National Consensus Project on Palliative Care: Clinical Practice Guidelines for Quality Palliative Care,' 3rd Edition, 2013. view source » 47 MB