In 2011, and as a result of participant feedback on the length of the course and increasing pressures on budgets and clinical time, the 'Connected' team developed and piloted an alternative 2-day training course. Birmingham City University was commissioned to evaluate the effectiveness and quality of the 2-day course vis-à-vis the "traditional" 3-day one. This article is written by the two evaluators and it discusses some of the issues that emerged during the evaluation. They broadly grouped these issues into two overlapping categories: 1) the mandatory nature of the course and the different professional background; and, 2) seniority of participants. In their discussion they consider the implications these issues have for communication skills training policy and practice and put forward suggestions for further research. view source »

This is not to imply that nothing is being done already, to undermine current initiative where it is to be found, nor to pre-empt the engagement work being undertaken by the Leadership Alliance for the Care of Dying People. (This is an expert group being led by Dr. Bee Wee, National Clinical Director of End of Life Care charged by the Minister & National Health Service (NHS) England to respond to Baroness Neuberger's Review of the LCP.) So we intend through hyperbole to catalyse constructive self-examination and criticism. Disagree, of course, but reflect as you do on why that may be. Metaphorically, it has turned out to be a story about elephants, and in the end, also about a horse. Come the 21st century in the U.K., palliative care was almost mainstream from its birth in the hospice movement. Medicine, generally, was beginning also to assert its clumsy footprint with mixed effect. On the positive side, the specialist palliative medicine training programme had produced a healthy and growing crop of consultants, and many hospitals had palliative care teams. view source »

Signing into a binding written commitment for their financial future has been a bitter experience for this large group of people: how much more painful might it be if they had signed into unhappy binding agreements about their future healthcare? The illusion that the future healthcare can be tightly defined is typified by the case for advance directives, an idea for which enthusiasm has unhappily out-stripped an increasingly critical biomedical literature. This ranges from their description by the majority of ICU staff in one U.S. study as "useless" to clear problems which arise when advance directives are patently in conflict with the patient’s best interests. http://www.imj.ie//ViewArticleDetails.aspx?ArticleID=13066view source »

Extract from Irish Medical Journal article

The illusion that the future healthcare can be tightly defined is typified by the case for advance directives, an idea for which enthusiasm has unhappily out-stripped an increasingly critical biomedical literature.

The ACLU is suing the U.S. Conference of Catholic Bishops for issuing guidelines the group claims led to substandard medical care for the pregnant woman in Michigan. The guidelines are called the Ethical & Religious Directives for Catholic Health Care Services and every Catholic hospital and Catholic healthcare institution must adhere to them or risk losing their classification as a Catholic institution. The guidelines cover such issues as end-of-life care to merging with secular organizations to the kind of patient who should be prescribed birth control. Medical ethicists say patients should be made aware of how the directives can affect their treatment at Catholic hospitals compared with secular hospitals especially in terms of abortion options or end of life care. view source »

Instead, every patient would receive individual end-of-life care plans, following the review led by Baroness Julia Neuberger.¹ However, doctors who led criticism of the pathway say new draft guidance, seen by The Daily Telegraph, outlining a replacement scheme will perpetuate many of its worst practices, allowing patients to suffer days of dehydration, or to be sedated, leaving them unable to even ask for food or drink. Professor Patrick Pullicino, a consultant neurologist ... said the new plan "lacks essential key components of the Neuberger report and perpetuates errors that were central to the dysfunction of the pathway." view source »

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

The most frequently reported unmet need was effective communication with health-care professionals, the lack of which negatively impacted on the care received by patients and carers. Physical care needs were met, which indicates that the examined palliative home care services were delivering satisfactory care in this domain, but lacking in other areas. The focus ... should be on improving other aspects of patient care, including communication by health professionals to prevent or reduce suffering in areas such as psychosocial domains. Valid and reliable quantitative measures of unmet needs in palliative care are needed to examine this area more rigorously. view source »

The Neuberger Report highlighted the complexity of various ethical, safety, clinical practice and negligence issues associated with pathway usage and how, despite technological advances, diagnosing dying continues to be challenging.¹ The U.K. Government's decision to phase out the LCP as policy following these findings, has generated considerable debate both within and beyond the U.K. However, another key issue raised by the Neuberger's report is the issue of the palliative care community's perceived willingness to readily adopt new clinical practices in the absence of evidence. It is this translational issue that this editorial explores. view source »

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

Of related interest:

Cochrane Database of Systematic Reviews | Online – 18 November 2013 – 'End-of-life care pathways for improving outcomes in caring for the dying.' With sustained concerns about the safety of the pathway implementation and the lack of available evidence on important patient and relative outcomes, recommendations for the use of end-of-life pathways in caring for the dying cannot be made. No new studies met criteria for inclusion in the review update. With recently documented concerns related to the potential adverse effects associated with Liverpool Care Pathway (the most commonly used end-of-life care pathway), the authors do not recommend decision making based on indirect or low-quality evidence. All health services using end-of-life care pathways are encouraged to have their use of the pathway, to date, independently audited. Any subsequent use should be based on carefully documented evaluations. view source »

Dr. Tony O'Brien, Palliative Care Consultant, Cork University Hospital and Marymount Hospice, Cork, said he supported "the process" of advance care directives, such that people should engage with family members and doctors, "and speak in general terms about what they believe their wishes might be." However, he advised that people "change over time" and could come to enjoy a "good quality of life" in circumstances that may have previously surprised them. Dr. O'Brien also expressed concern over the fact that legally-binding advance care directives would be "open to legal challenge" and the courtroom was "the very last place you want these kinds of sensitive, delicate issues addressed." He foresaw that issues would arise regarding definitions of conditions and states of illness. Advance care directives are legally binding in Irish law, but there is currently no legislation covering this area, with the Assisted Decision Making (Capacity) Bill due to incorporate provisions. According to a Medical Council discussion document, it is presently difficult to state the legal position in Ireland "as there have been no cases directly in point in this jurisdiction, nor are there any relevant statutory provisions." view source »

There are recommendations to increase funding through a national tariff for palliative care services, address inconsistencies, and replace the Liverpool Care Pathway with individual end-of-life care plans. This paper explores the economic implications of the review's recommendations and links these to inadequacies with the current economic framework currently recommended for use in the U.K. by the National Institute for Health and Care Excellence, before highlighting aspects of ongoing research aimed at addressing these inadequacies. While there is a need for increased funding in the short term (highlighted in recent reviews), increasing funding to services that have little evidence base appears to be an irresponsible long-term strategy. Hence there should also be increased investment in research and increased emphasis in particular on developing economic tools to evaluate services. view source »

Key themes identified: 1) getting involved 2) living the role; and, 3) transforming self through caring for others. As well, contextual features at the organizational, peer, and personal levels were identified, which either facilitated or impeded inmate caregiving. Provision of enhanced EOL care by inmate peers shows promise for improving prison community relations and morale, reducing suffering, and demonstrating care and compassion within the harsh prison environment. Implications for correctional nursing practice include providing training for inmate caregivers, including them in team meetings, and implementing grief support programs. Also, upholding nursing's code of ethics and watching for predatory behavior are critical. view source »

Extract from Journal of Forensic Nursing article

This study provides clear evidence that providing compassionate care for dying peers may result in transformative experiences for inmate caregivers.

However, according to the latest report from the Irish Hospice Foundation,¹ just "just two regions – the midwest and northwest – come close to fulfilling government policy." The report found that a number of regions of the country – including the northeast (comprising Louth, Meath, Cavan, Monaghan) and the southeast (Waterford, Wexford, Kilkenny and Carlow) – as well as Wicklow, Mayo, and Kerry – have no hospice inpatient unit. According to the report, "while 67% of Irish people express a preference to die at home, in reality only 26% of the circa 28,000 deaths that occur in Ireland each year take place in the home, and 43% occur in hospital. In contrast, 40% of all patients cared for by hospice home care teams die at home." The report revealed: "The midwest and northwest have very good access to hospice services and much lower percentages of cancer patients dying in acute hospitals. Patients approaching death in the "resource-poor" regions of the southeast, midlands and northeast suffer significant inequity in access to hospice services, with a consequential higher proportion of cancer deaths in acute hospitals." view source »

1. 'Access to Specialist Palliative Care Services and Place of Death in Ireland: What the data tells us,' Irish Hospice Foundation, Perspectives No. 2, May 2013. download source » (842 KB)

The white paper Equity & Excellence: Liberating the NHS sets out the government's vision for the NHS and proposes placing patients at the heart of the health service, giving them greater choice and control over services while empowering doctors. For this to occur, an understanding of patients' and doctors' healthcare priorities is required. The aim of this study was to evaluate the views of patients and junior doctors towards rationing and prioritisation of healthcare services in the NHS. Patients favour a doctor-led approach to rationing but also have strong opinions on which treatments and patient groups should be prioritised. The views of junior doctors, however, generally overlap with those of patients. If healthcare is to be patient-led but guided by doctors, doctors will need to be aware of patient healthcare priorities. view source »

Extract from Bulletin of the Royal College of Surgeons of England article

In terms of the types of treatments that should be prioritised, both patients and doctors supported those that would prolong or extend life and improve quality of life. This suggests that when assessing cost effectiveness of treatments, not only should there be an emphasis on survival benefits but improvements in quality of life should also be evaluated and regarded with a degree of importance.

1) questions over providing universal versus targeted support; 2) a lack of clear evidence driving service delivery; 3) informal or no risk assessment; and, 4) limited or no evaluation of services. Bridging the gaps between the policy and practice ... [and] ... support requires acknowledging the challenges of medical and public health models, improving bereavement need assessment processes, enhancing the role of primary care providers, and extending research to provide an evidence-base for interventions. view source »

That includes spontaneous remissions from cancer and recovery from illnesses everyone thought was impossible. Are these miracles? I am not sure, but 76% of Americans believe in miracles and herein lies the problem. Do we build a health care system that plans for miracles? How much time and money should we invest in waiting for a medical miracle to occur at the bedside? Medical futility is a term that implies experts, often from different specialties, agree there is no reasonable chance of success from a given treatment. While futility does not include a numerical part of the definition, we might agree that something is medically futile if the chance of recovery is, say, more than 1 in a million. So, when a person is in intensive care and the only treatments are those considered "medically futile," should families be allowed to insist that hospitals continue to provide all life-sustaining therapies because "there is always a chance that a miracle will take place"? view source »

Ten years ago, the American Bar Association's Commission on Law & Aging looked into the problem and cited estimates that 4% of older adults are "unbefriended elderly,” a chilling phrase referring to those who can't make decisions for themselves, have no advance directive or surrogate decision makers, and have no family or friends able to assist. Most of them aren't computer literate Times subscribers trying to plan ahead... They're primarily lifelong loners in hospitals and nursing homes, the report found. But it's an important question: If you don't have relatives or close friends who can serve as your health proxy or hold your power of attorney ... are you supposed to resign yourself to whatever the emergency room physician or intensive care staff member decides to do, or not do, when you can't direct your own care? view source »

Integration is a perfect example of this truism. When some people talk about integration they actually mean organisational and provider integration – creating single accountable care organisations or lead providers. Others mean integrating commissioning – bringing local authority and health commissioning together into a single place. Some mean improving collaboration and co-ordination with the voluntary and other sectors. Yet others mean integrating governance – for example, creating health and wellbeing boards. And there are yet more who mean integrating finance – for example by pooling budgets or creating integrated health and social care funds. They're all integration, they're all important steps, but none of them, by and of themselves, directly improves patient outcomes. Let's please ensure that the move to integration improves patient outcomes and doesn't just end up making organisational, governance, budgetary or structural changes that do little to change patient pathways. view source »

However, intensive care interventions often sustain life under circumstances that will not achieve an outcome that patients can meaningfully appreciate. Such treatments are often perceived to be "futile" by health care providers. A survey of ICU physicians in Canada found that as many as 87% believed that futile treatment had been provided in their ICU in the past year. In a single-day cross-sectional study performed in Europe, 27% of ICU clinicians believed that they provided "inappropriate" care to at least one patient, and most of the inappropriate care was deemed such because it was excessive. In the U.S., critical care accounts for 20% of all health costs and 1% of the gross national domestic product. Because approximately 20% of deaths in the U.S. occur during or shortly after a stay in the ICU, critical care is scrutinized for the provision of potentially futile resource-intensive treatment. However, information is lacking on the prospective identification of patients who are perceived as receiving futile treatment, factors associated with these perceptions, and the outcomes and costs of the care. Treatment that cannot achieve a patient's goals or that simply maintains a state such as ICU dependence or permanent coma is contrary to professional values, inappropriately uses health care resources, and creates moral distress. Nonetheless, the determination of futility is often value laden. We convened a focus group of critical care physicians to establish reasons why treatment might be considered futile. Using these reasons, we surveyed critical care physicians daily during a 3-month period to identify patients whom they perceived to be receiving futile treatment. view source »

N.B. Commentary of this article: view source »

[In a recent study] Dr. [Alexia] Torke and her colleagues talked to 35 surrogates who had made major decisions – about life-sustaining treatments, surgery or other procedures, or about where the patient would go when discharged – on behalf of incapacitated seniors admitted to two Indianapolis hospitals.² These were not legally designated health care proxies, for the most part, because most patients had no advance directive and hadn't chosen a decision maker. The surrogates were simply the family members – mostly daughters – to whom the doctors turned for guidance. What these relatives disclosed ... in face-to-face interviews ... mirrored what several other studies have found: surrogates often base their judgements on considerations other than what the patients want. view source »

1. 'Prevalence of mental incapacity in medical inpatients and associated risk factors: Cross-sectional study,' The Lancet, 2004;364(9443):1421-1427. view source »
2. 'Making decisions for hospitalized older adults: Ethical factors considered by family surrogates,' Journal of Clinical Ethics, 2013;24(2). view source »

Given that accuracy in surrogate decision making is an important goal in end-of-life decision making, and in light of that previously seen levels of accuracy reflect substantial disagreement, error, or both, this study examined both relationship and individual factors that potentially affect surrogate accuracy. Specifically, this study examined similarity, agreement, and assumed similarity – a process whereby raters use their own traits and preferences to rate another person – in spousal ratings of end-of-life treatment. This study expands on previous research by examining the potential influence of relationship factors and assumed similarity on end-of-life decision making among a sample of newlyweds. Results indicate a moderate level of similarity on husband and wife self-rated end-of-life treatment preferences and a moderate level of agreement between self and proxy ratings. The largest correlations were seen between self ratings and proxy ratings reflecting strong assumed similarity in proxy ratings. For wives, similarity with husbands on a few attitudinal variables (i.e., spirituality, moral strictness, and conservatism) influenced proxy accuracy. Recognizing the potential impact of personal preferences on proxy ratings, as well as the potential influence of relationship factors, may help improve proxy accuracy and end-of-life care for patients and families. view source »

The authors highlight key findings by its team at the Cicely Saunders Institute that have informed policy in the U.K., Europe, and beyond, influencing clinical practice and training. They also share the lessons learnt in the process of conducting research on aspects related to home palliative care over the last 15 years. The authors conclude by presenting priorities for future research, expressing their commitment as the WHO Collaborating Centre for Palliative Care, Policy & Rehabilitation to continue helping the development of quality, accessible, and cost-effective home palliative care for the generations to come. view source »

The ACS CAN awarded top scores ... to Connecticut, Maryland, Massachusetts, and Rhode Island using a scoring system that combines grades from the Center to Advance Palliative Care's national palliative care report card with actions on model legislation.² The four states passed laws "this session that focus on improving patient quality of life through palliative care," the ACS CAN noted, with Maryland finally crossing "the finish line with a palliative care bill after a 3-year effort." The six states on the low end of the scoring range ... were Alabama, Alaska, Arkansas, Delaware, Mississippi, and Oklahoma. view source »

1. How do you measure up? A Progress Report on State Legislative Activity to Reduce Cancer Incidence and Mortality, American Cancer Society Cancer Action Network, August 2013. view source » (1.9 MB)

2. America's Care of Serious Illness: A State-by-State Report Card on Access to Palliative Care in Our Nation's Hospitals, Center to Advance Palliative Care, May 2011. [Noted in Media Watch, 19 September 2011, #219 (p.9). view source » (760 KB)

Their feelings, habits, fears, beliefs and concerns – can play a role in illness or injury and are proved scientifically to affect the perception of pain and treatment outcomes. Doctors do take a medical history – a patient's medical condition, including tests, treatments and medication that may have been prescribed, says Dr. Browde. They are not, however, properly trained to listen to patients' narratives, even if they have the time or inclination to do so. But pan-palliative care goes beyond doctors listening attentively to patients and the conventional definition of palliative care – a term closely associated in the minds of many people (and many doctors) with the pain of terminal illness and so-called end-of-life care, especially in the case of people with cancer, and in this country, Aids-related illnesses. view source »

It was always about pain! Here was someone crouched in a corner on the floor, there was someone else banging his head against the wall, and yet another being held down by distraught relatives as he thrashed about like a fish on a hook. Small wonder then that as they went about their tasks, our teams began to suffer burnout born out of a sense of helplessness in the face of such great suffering. All of this changed after we got our licence for oral morphine and could now assure our patients that their physical pain would no longer hold them captive. Sadly, there are millions in India today who are not as lucky. They have been denied freedom from pain because of out-dated and onerous regulations which were brought in by the British and continue to this day in spite of advances in medicine. This is the state of affairs that shames all of us who work in the field of palliative care in this country. We, too, cannot hold our heads up high anywhere. A few months ago we were so hopeful that this would finally change. The Revenue Ministry ... amended the Narcotic Drugs & Psychotropic Substances Bill so that access to oral morphine for pain control would no longer be the prerogative of a lucky few. But I am afraid that our hopes were belied when the amended Bill in its latest version was not passed in the last session of Parliament... It has left us wondering whether the Bill will be tabled and passed in the coming session or not so that India can finally join the comity of civilized nations and can show through its actions that it cares for the well-being of its citizens. view source »

But a forthcoming study by American Association of Retired Persons finds that huge demographic changes threaten to undermine that bedrock. Today, Baby Boomers – now in their 50s and 60s – are caring for their parents. Because there are so many Boomers, there is a relatively big pool of potential caregivers. In technical terms, the ratio of caregivers to those needing assistance is high. In human terms, there are lots of 50-somethings who are taking time off work and lots of 60-somethings spending their early retirement caring for their 80-something parents. But that pool of family caregivers will soon dry up. In a couple of decades, when all those Boomers who are now providing care will need assistance themselves, there will be many fewer adult children to help them out. view source »

A Halifax wife, meanwhile, pleaded that her husband should be prevented from dying long enough for a traditional Chinese healer to try to cure his cancer. A string of legal disputes related to the treatment of horribly sick patients has drawn increasing interest, but one compelling aspect of the quarrels has been largely overlooked. Most of the battles involve patients from ethnic and religious minorities – frequently first-generation immigrants – and point to a cultural clash in Canada's intensive-care units. Chinese, south Asian, Muslim, Middle East Christian and orthodox Jewish families have struggled to have hospitals keep their loved ones alive – often citing an abiding belief in the sanctity of life – when physicians rooted in more pragmatic, scientific values have called further care futile. The bitter conflicts can be triggered by cultural misunderstanding, suspicion of racism or, perhaps most significantly, religious belief not yet tempered by Canada's relatively secular culture, say doctors, lawyers and ethicists familiar with the disputes. view source »

Researchers found 78% said their main priority at the end of their lives was a pain-free death. This was followed by being surrounded by loved ones (71%) having privacy and dignity (53%) and being in familiar, peaceful surroundings (45%). However, while 63% of people wanted to die at home, only 27% felt that home was a place where they would be free from pain during their final days. The report concluded: "This focus on where people die – rather than what they want at the end of life – has inhibited personalisation and informed choice for patients and their families. It has led to a lack of proper scrutiny of the experience of dying at home and left other settings neglected when it comes to developing them as good places for people to die." view source »

1. A Time and a Place: What People Want at the End of their Life, Sue Ryder, July 2013. view source »

There was immediate and full consensus on the following eight domains, including the recommendations: person-centred care, communication and shared decision-making; optimal treatment of symptoms and providing comfort (these two identified as central to care and research); setting care goals and advance planning; continuity of care; psychosocial and spiritual support; family care and involvement; education of the health care team; and societal and ethical issues. After revision, full consensus was additionally reached for prognostication and timely recognition of dying. Recommendations on nutrition and dehydration (avoiding overly aggressive, burdensome or futile treatment) and on dementia stages in relation to care goals (applicability of palliative care) achieved moderate consensus. view source »