As modern medicine has produced some spectacular interventions, including antibiotics for infections, antiretroviral agents for persons with human immunodeficiency virus infection, detailed imaging through computed tomography, and magnetic resonance imaging to obviate the need for diagnostic surgery, it is not surprising that physicians and our patients think that more diagnostic tests and treatments are always better. http://archinte.jamanetwork.com/article.aspx?articleid=1485993

Mrs. Justice Nicola Davies said a judicial review involving the health secretary, Jeremy Hunt, on the legal issues in the case of 63-year-old Janet Tracey, who had a DNR notice put on her file without her knowledge, would be neither "appropriate nor proportionate." Tracey was admitted to hospital with a broken neck following a car accident two weeks after she had been diagnosed with terminal lung cancer. Eight days later, after she was transferred to Addenbrooke's Hospital in Cambridge, a DNR notice was put on her medical record without either Tracey or her family being consulted. When the family objected, it was removed. A second DNR notice went on the file three days later, after talks with the family, but not with the patient, who they felt Tracey too ill to discuss it. The family sought a judicial review to obtain a clear and consistent policy across the National Health Service on DNR orders, and wanted Hunt to give evidence. http://www.guardian.co.uk/society/2012/dec/21/court-blocks-judicial-review-dnr

Research shows that 70% of adults would like to be cared for and die in their own home. But the great majority of us still die in hospital; today, two out of 10 are able to fulfil this final wish. Progress has certainly been made since the Department of Health's publication of an end-of-life care strategy in 2008, but recent reports show that this progress has been patchy across the country. Working with Home Group, the Local Government Information Unit [LGIU] surveyed 91 upper tier councils to ask them about their arrangements for end of life care. Housing is an essential piece of the jigsaw when it comes to helping people die in their own homes. The Good Death project,¹ established by Public Health North East and managed by Home Group, has brought together housing, health and social care services to make practical arrangements for residents to enable them to remain in their own homes for as long as possible at the end of life. http://www.guardian.co.uk/local-government-network/2012/dec/10/good-death-local-government-end-of-life-care

1. 'A good death: The role of the local authority in end of life care,' Local Government Information Unit, November 2012. [Noted in Media Watch, 3 December 2012.] http://www.lgiu.org.uk/wp-content/uploads/2012/11/A-Good-Death-the-role-of-the-local-authority-in-end-of-life-care.pdf (600 KB)

The LGIU survey found

• Six out of 10 councils thought that their existing end-of-life care arrangements would not be sufficient in future.
• Four out of 10 thought that health and wellbeing boards should lead on end-of-life care in future.
• However, only three out of 10 said that their shadow health and wellbeing boards had identified end-of-life care as a priority.
• Only a quarter of respondents said that housing departments were engaged with social care on end-of-life care issues, despite the often crucial role of housing in supporting quality of life outcomes.

It claimed that the BMJ personal view² ... was evidence that sick children in the National Health Service were being put on the Liverpool Care Pathway. It added, "The Mail can reveal the practice of withdrawing food and fluid by tube is being used on young patients as well as severely disabled newborn babies." However, in a letter to the Mail , which had not been published when the BMJ went to press, Godlee pointed out that "the doctor who wrote the BMJ article does not practise in the U.K. Nor does the article mention the Liverpool Care Pathway." The Daily Telegraph ran a similar news item based on the Mail's story and that has been shared many hundreds of times on social media. That story has been deleted from the newspaper's website after a BMJ reader pointed out its inaccuracies, although the Telegraph has refused to post a retraction. http://www.bmj.com/content/345/bmj.e8240

1. "Now sick babies go on death pathway: Doctor's haunting testimony reveals how children are put on end-of-life plan," Daily Mail, 28 November 2012, http://www.dailymail.co.uk/news/article-2240075/Now-sick-babies-death-pathway-Doctors-haunting-testimony-reveals-children-end-life-plan.html

2. "How it feels to withdraw feeding from newborn babies," British Medical Journal, 1 November 2012. http://www.bmj.com/content/345/bmj.e7319

A reader's response to BMJ personal view

I expect when the anonymous doctor wrote this heartfelt and thought provoking letter, the furthest thing from her/his mind was what the American media might make of it. But last night, under the shocking headline "Will sick babies be starved to death under Obamacare? Doctor describes "horror" of British socialist healthcare system," the right-wing media stormed into action to use this doctor's concern and appeal for open discourse around questions of neonatal end-of-life and palliative care practices to rail against "socialism" which, as we Americans are repeatedly told, you Brits hate (so much so, in fact, that no government since Clement Attlee's has dared dismantle the National Health Service [founded in 1948], despite its shortcomings). http://www.bmj.com/content/345/bmj.e7319/rr/618091

This metaphysics of efficient causation is also what drives modern liberal governments bent on efficient control of bodies, living and dying. It reduces life to its mechanisms of control, at both the level of the body and at the level of the body politic. Since in this metaphysics, life comes from nowhere (no meaningful formal causation), is headed nowhere, and has no particular purpose (no final causation), we are left with bodies caught in the social apparatuses of liberalism. On this Western metaphysics of efficient causation, we are little more than corpses figuring out when to embrace death.

Link: http://www.abc.net.au/religion/articles/2012/11/27/3642313.htm

Medics sometimes let the cancer diagnosis "cloud other considerations in their management," leading to substandard care, according to the Royal College of Physicians [and the Royal College of Radiologists].¹ Members of the college have written a report highlighting problems with the care of cancer patients with "urgent" medical needs and making recommendations for improving their care. The care patients receive in such circumstances is often excellent, the report notes. But it cautions doctors who are not cancer specialists think patients with cancer who develop unexpected complications "are sometimes given an over-optimistic picture of their outlook." This can lead to "inappropriate or unhelpful interventions" in those in their last weeks of life. http://www.telegraph.co.uk/health/healthnews/9690683/Terminal-cancer-patients-given-pointless-treatment.html

1. 'Cancer patients in crisis: Responding to urgent needs,' a Report of a Working Party of the Royal College of Physicians and the Royal College of Radiologists, November 2012. http://www.rcplondon.ac.uk/sites/default/files/documents/cancer-patients-in-crisis-report.pdf (PDF 1.5 MB)

While medical specialists are expected to break 'bad news' to their patients and ease their transitions to specialist palliative care if required, few have received formal training in such interpersonal complexities. Furthermore, there also often exists clinical ambiguity around whether to continue active treatment vis-à-vis refocusing on quality of life and palliation. In this paper the authors explore the experiences of twenty Australian medical specialists, focusing on issues such as: dilemmas around when and how to talk about dying and palliation; the art of referral and practices of representation; and, accounts of emotion and subjective influences on referral. The results illustrate how this transitional realm can be embedded in emotions, relationships and the allure of potentially life-prolonging intervention. http://www.sciencedirect.com/science/article/pii/S0277953612007575?v=s5

Some recent cases give ample reason why a society increasingly committed to respecting patient autonomy and family wishes at the end of life will find little role for futility determinations, no matter how sound and deliberative they may be. Further, gaps in medical records and a lack of continuity in patient care often prevent the most sound assessments of appropriateness when patients or their family members are motivated to seek futile care. If futility assessment has no future, then what are physicians to do? They may seek to improve end-of-life care to make it less stressful for patients, family, and staff. They may enhance efforts at early communication and mediation with families as soon as they perceive a gap between hope and medical reality. They may seek another somewhat neglected strategy – creating ways of more clearly framing care and communicating about it – that makes it less likely that futility will ever be reached. These ... issues are addressed in this issue of Mayo Clinic Proceedings.^1,2 http://www.mayoclinicproceedings.org/article/S0025-6196(12)00905-6/fulltext

1. 'End-of-life care decisions: Importance of reviewing systems and limitations after two recent North American cases,' Mayo Clinic Proceedings, 2012;87(11):1098-1105. Two recent and unfortunate North American cases involving end-of-life treatment highlight the difficulties surrounding medical futility conflicts. As countries have explored the greater influence that patients and their representatives may play on end-of-life treatment decisions, the benefits and struggles involved with such a movement must be appreciated. These two cases are used to examine the present systems existing in the U.S. and Canada for resolving end-of-life decisions, including the difficulty in defining medical futility, the role of medical ethics committees, and controversies involving surrogate decision making.http://www.mayoclinicproceedings.org/article/S0025-6196(12)00850-6/fulltext?refuid=S0025-6196(12)00905-6&refissn=0025-6196

2. 'Clinical pearls in palliative medicine,' Mayo Clinic Proceedings, 2012;87(11):1118-1123. http://www.mayoclinicproceedings.org/article/S0025-6196(12)00815-4/fulltext?refuid=S0025-6196(12)00905-6&refissn=0025-6196

The nation's 23 top academic medical centers also vary quite a bit in what researchers say is the intensity of care they provide patients at the end of life, according to an analysis from the Dartmouth Atlas Project.^1,2 More intense care can translate into worse, and more expensive, care at the end of life, according to the authors. So, the thinking goes, physicians who train at hospitals with better and more efficient care will be in better shape to become leaders in changing how health care is delivered. The authors of the report call it the "hidden training curriculum." "Learning how to use health care resources wisely, provide high-quality care, and incorporate patient preferences into a care plan is just as important as learning to work up a patient," said Alicia True, a co-author of the report and a med student at the Geisel School of Medicine at Dartmouth. The report tracks variations in end of life care and chronic illness management, surgical procedures, and quality and patient experience using data from Medicare and published on the Hospital Compare website.³ http://www.wbur.org/npr/163941693/hidden-curriculum-shapes-how-med-students-learn-end-of-life-care

1. 'What Kind of Physician Will You Be? Variation in Health Care and Its Importance for Residency Training,' The Dartmouth Institute for Health Policy & Clinical Practice, October 2012. http://www.dartmouthatlas.org/downloads/reports/Residency_report_103012.pdf (3 MB)

2. 'Hospital Care Intensity Index, Last Two Years of Life,' The Dartmouth Atlas of Health Care. http://www.dartmouthatlas.org/

3. Hospital Compare, U.S. Department of Health & Human Services. http://hospitalcompare.hhs.gov/(X(1)S(feakoi1voslldaij2oid4o4a))/hospital-search.aspx?AspxAutoDetectCookieSupport=1

But there's new evidence that a surprisingly large majority of patients who receive this news don't fully comprehend it, or perhaps willfully choose to ignore it. Almost three out of every four patients diagnosed with stage IV lung or colon cancer believe that chemotherapy can cure them of their disease, according to a survey of more than 1,100 cancer patients by the Dana-Farber Cancer Institute.¹ And yet for cancers diagnosed at that late of a stage, chemotherapy has been definitively shown to extend lifespan by only a few months at best. The survey ... also found that patients who rated their doctor as being a good communicator were more likely to hold mistaken beliefs about their prognosis. This indicates that some doctors may be trying to tell their patients what they think they want to hear, rather than the truth. http://www.npr.org/blogs/health/2012/10/25/163572138/many-terminal-cancer-patients-mistakenly-believe-a-cure-is-possible

1. "Patients' expectations about effects of chemotherapy for advanced cancer," New England Journal of Medicine, 2012;367(17):1616-1625. http://www.nejm.org/doi/full/10.1056/NEJMoa1204410

Reductions in Health Services Executive budgets mean older people have less say in how their care is provided, with the time available increasingly determining how the care is given. A separate report on end-of-life care in hospitals highlights the impact of spending cutbacks on such care. Staff have less time to implement improvements in end-of-life care, it is more difficult to release staff from day-to-day work for training and staff have less time to spend with those who are dying. "Cuts in capital budgets are likely to have a negative impact on the prospect of more single rooms in hospitals, or viewing rooms in mortuaries – both issues that need to be addressed to improve the quality of end-of-life care and the experience of the bereaved." Almost 30,000 people die in Ireland each year, 75% of them in hospitals, but end-of-life care is not seen as a core hospital activity, says the report. http://www.irishtimes.com/newspaper/health/2012/1016/1224325290794.html

1. "Quality and Standards in Human Services in Ireland: Home Care for Older People," National Economic & Social Council, October 2012. http://www.nesc.ie/en/publications/publications/nesc-reports/quality-and-standards-in-human-services-in-ireland-home-care-for-older-people/

A content analysis of opinion pieces in medical and nursing literature was conducted to examine how clinicians define and describe CSD, and how they justify this practice morally. Most publications were written by physicians and published in palliative or general medicine journals. 'Terminal sedation' and 'palliative sedation' are the most frequently used terms to describe CSD. Seventeen definitions with varying content were identified. CSD was found to be morally justified in 73 % of the publications using justifications such as 'last resort,' 'doctrine of double effect,' 'sanctity of life,' 'autonomy,' and 'proportionality' The debate over CSD in the opinion sections of medical and nursing journals lacks uniform terms and definitions, and is profoundly marked by 'charged language,' aiming at realizing agreement in attitude towards CSD. Not all of the moral justifications found are equally straightforward. To enable a more effective debate, the terms, definitions and justifications for CSD need to be further clarified. http://www.springerlink.com/content/w230263533787119/

They said the most senior staff available must be involved because "it is not always easy to tell whether someone is very close to death." The demand for the highest possible level of supervision of patients on the Liverpool Care Pathway follows allegations that the system is being used to kill off sick people before their time – effectively officially sanctioned euthanasia. Under the pathway, patients judged to be days or hours from death can be denied water or nutrition through a tube, may be heavily sedated, denied treatment that could prolong life and not given any unnecessary tests or treatment. http://www.dailymail.co.uk/news/article-2211484/Two-doctors-agree-use-controversial-death-pathway-patients-final-days.html

A study, carried out by researchers from the Cicely Saunders Institute ... found that 42% of patients with advanced non-malignant conditions reported a preference for home death, yet only 12% of deaths from respiratory and neurological conditions occur at home, and only 6% for dementia. Research ... also found that living alone consistently reduced the chance of home death. Support at home from family carers without professional care made the chance of hospital death three times more likely than when professional carers were also involved. In these cases, the provision of professional home care support, either to support family carers or to provide direct care, would ensure that more patients with advanced non-malignant conditions die at home. Improving care towards the end of life is an important priority for the public and for health professionals, with 10-20% of all healthcare expenditure spent on this area. http://www.eurekalert.org/pub_releases/2012-09/kcl-pce092512.php

The country faces a growing crisis in its ability to care for people suffering cancer, dementia and other long-term ailments, according to specialists who say that supply is not keeping pace with demand.¹ Better health care, and to some extent a fitter older population, means fewer people are experiencing "sudden" deaths... While increased longevity is to be welcomed, doctors say not enough resources are being devoted to making the last days of the elderly as comfortable as possible. Gradual deaths from cancer and other chronic diseases are already "a considerable burden" for European countries. Health planners need to look at improving end-of-life care, particularly for those not suffering from cancer. http://www.telegraph.co.uk/health/healthnews/9549432/More-hospices-needed-to-care-for-people-dying-gradually.html

1. "The burden of non-acute dying on society: Dying of cancer and chronic disease in the European Union," BMJ Supportive & Palliative Care, published online 28 August 2012.

We are currently living in the "Internet age" and many people have integrated social media into all aspects of their lives. As use becomes more prevalent, and as users age, social media are more likely to be viewed as a source of information regarding medical care preferences. This article explores the ethical and legal issues raised by the use of social media in surrogate decision making. http://www.tandfonline.com/doi/full/10.1080/15265161.2012.708088

Figures obtained by IMT ahead of a major palliative care conference in the Royal College of Physicians Ireland show that in the case of dementia patients, 70% of staff had not had any palliative care training in the past two years and 66% of healthcare assistants and 42% of nurses did not feel that they were competent to address death and dying with patients. In cases of severely-ill heart disease patients – with the research being conducted by the Cardiology Departments at the Mater and Connolly Hospitals and St Francis Hospice and Fairview Family Practice – 98% had not received any palliative care training in the past two years. Furthermore, 69% were "not familiar" with the principles of palliative care. In advanced respiratory disease patients with life-limiting disease, only 7% had received education in palliative care, while 76% were not familiar with the principles of palliative healthcare. http://www.imt.ie/news/latest-news/2012/09/huge-gaps-in-hospital-palliative-care-training.html

Whereas adult palliative care has traditionally focused on patients with cancer, paediatric services look after children with a diverse range of life-limiting conditions, most commonly genetic/congenital diseases (41%) and neuromuscular conditions (39%). Disease trajectories tend to be long and particularly unpredictable. Emergencies, often respiratory crises, occur relatively frequently and usually respond to active intervention. Prescribing for children is influenced by many factors, including body weight and low acceptability of the subcutaneous route of drug administration. Families carry a particularly heavy burden, as long-term primary care givers. Related psychosocial morbidity, such as depression, divorce and unemployment, is prevalent. Children, unlike adults, tend to continue to develop physically and cognitively throughout their illness, and families expect flexible, responsive support at the location of the child, whether at home, school or hospital. Paediatric hospice admission usually occurs for planned respite care or for symptom management, at any time from diagnosis to death. The dual approach, combining palliation with disease modification, cuts across the conventional transition from active treatment to palliative care. http://pmj.sagepub.com/content/26/6/777.full.pdf+html

More recently, the argument has shifted away from the difficult project of definitions, to outlining institutional policies and procedures that take a measured and patient-by-patient approach to deciding if an existing or desired intervention is futile. The prototype is the Texas Advance Directives Act,² but similar procedures have been widely implemented both with and without the protection of the law. While this method has much to recommend it, there are inherent moral flaws that have not received as much discussion as warranted. Because these strategies adopt a semblance of procedural justice, it is assumed that the outcomes of such proceedings will be both correct and fair. The author argues there are three main irremediable defects in the policy approach: there is the potential for arbitrary decision-making about futility in specific cases; there are structural, pre-ordained consequences for ethnic minorities who would be disproportionately affected by the use of these procedures; and the use of rationing justifications to support the use of these policies. http://www.springerlink.com/content/q033k26474v2m877/

1. HealthCare Ethics Committee Forum

2. "The courts, futility, and the ends of medicine," Journal of the American Medical Association, 2012;307(2):151-152. http://jama.ama-assn.org/content/307/2/151.extract

New draft guidelines drawn up by the NHS [National Health Service] watchdog NICE [National Institute for Health & Clinical Excellence] will require local authorities and health trusts to give people diagnosed with dementia an opportunity to discuss options for care at the end of their life as early as possible while they still have the capacity. It follows research showing that only a tiny minority of people have communicated their wishes for how they would like to be treated if they were terminally ill. Doctors, campaigners and church leaders have warned that up to 100,000 people a year are denied the chance of dying at home surrounded by friends and family rather than in hospital, often because their wishes were never recorded.http://www.telegraph.co.uk/health/healthnews/9477623/Dementia-patients-given-right-to-say-on-end-of-life-care.html

The debate appears to be based on a misunderstanding of palliative care. By definition, it intends neither to hasten nor postpone death. Instead, it helps people live well before they die by meeting the physical, emotional, practical and spiritual needs of each individual. Its power to transform someone's quality of life, and the effect this has on their friends and family, should never be underestimated. It is dangerous to consider palliative care as an expendable luxury. A dying person is still a living person, and we would all want our loved ones to live comfortably and with dignity, with their physical and emotional pain under control, if they were to have a terminal illness. Hospices make a huge contribution to supporting people at the end of life and their families, caring for 360,000 people a year. Most hospices are independent local charities, only receiving a minority of their funding from the NHS. Together, hospices must raise £1.5 million every day, making them collectively the biggest fundraising cause in the U.K. http://www.scotsman.com/news/jonathan-ellis-palliative-care-is-a-human-right-to-be-protected-1-2456653

1. NHS funds "better spent on obesity," The Scotsman, 4 August 2012. http://www.scotsman.com/news/nhs-funds-better-spent-on-obesity-1-2451782

The wishes and preferences of the person concerned must be identified before they are too unwell to be involved in decision making. However, insufficient research and guidance exist on involving children and adolescents in advance care planning. Retrospective interviews with the parents of children who had an advance care plan found the process helpful in assuring that the best care was obtained for their child, and in avoiding unnecessary suffering and preserving quality of life. Perhaps unsurprisingly, these plans focused exclusively on medical interventions, covering decisions around resuscitation, artificial feeding, intubation and ventilation, antibiotic use, and admission to hospital. Parents reported "having peace of mind" and retaining a sense of control once they had signed the plan, but it is unclear whether their children...

http://www.bmj.com/content/345/bmj.e5111?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+bmj%2Fcomment+(Latest+BMJ+Comment)

The "advance refusal" notices operate like an organ donor card, enabling people approaching the end of their life to make their wishes clear to while they still have capacity. It comes amid a growing backlash against overuse of the "Liverpool Care Pathway," which allows medical staff to withhold fluid and drugs from a patient while they are heavily sedated, actively speeding their end. Supporters of the technique say that it is the kindest way of letting people slip away rather than die in pain. But leading doctors have voiced fears that hospitals are hastening the deaths of elderly patients to cut costs and free up bed space amid claims it has become a "standard" alternative to euthanasia. The number of patients put on the pathway has risen sharply in recent years... http://www.telegraph.co.uk/health/elderhealth/9420794/Advance-refusal...

That was the conclusion from a guide ... designed to improve the quality and impact of social work at the end of life. Social workers' skills in advocacy, listening, helping people adjust to changing circumstances and working with the whole family and their human rights value base made them a vital ingredient in good end-of-life care. Council social workers' contribution to end-of-life care was often lacking and it was seen as a luxury. http://www.communitycare.co.uk/Articles/19/07/2012/118394/Social-work-39too-often-missing-from-end-of-life.htm

1. 'The route to success in end of life care – achieving quality for social work,' National End of Life Care Programme, The College of Social Work & National Health Service, July 2012. http://www.endoflifecareforadults.nhs.uk/assets/downloads/EoLC_Social_Work_Route_to_Success_web.pdf (2.3 MB)

To the authors' knowledge, a patient-held fear to voice disagreement has not been found or examined in previous research, and yet it is a major challenge to making progress toward shared decision making. Reluctance to express disagreement in the office may correlate with poor adherence outside the office. Limitations of this study include the use of a large convenience sample and a hypothetical scenario. The findings [of this study] point to the need to test interventions that explicitly allow patients to voice disagreement with their physicians. http://archinte.jamanetwork.com/article.aspx?articleid=1212630

However, that is not the case. Palliative care patients can donate various tissues, including corneal tissue, and in some cases organs. Donation rates from palliative care patients are low as a result of a variety of factors, e.g. the family not knowing the deceased's wishes, negative attitudes to organ/tissue transplantation among relatives and clinicians, fears of disfiguring the body and wanting to protect the deceased person from further harm. Health professionals can be reluctant to broach the topic of tissue donation with patients and/ or their families/next of kin. This article will explore the involvement of palliative care patients in decisions about donating their tissues, why families may be reluctant to consent to donating organs/tissues of deceased loved ones and reasons why nurses are wary of discussing the possibility of donation with patients and/or their next of kin. Recommendations for practice will also be made. http://endoflifejournal.stchristophers.org.uk/clinical-review/the-barriers-to-organ-and-tissue-donation-in-palliative-care

With the increase in discussion about euthanasia, there has also been confusion around the ethical principles of withholding and withdrawing care. Any treatment that we offer should be medically indicated and based on the clinical situation and knowledge of the patient's values and preferences. A treatment may be withheld or not initiated if it is not medically indicated. While we are not obliged to offer treatments, it is always helpful for the family to understand why that treatment is not being offered. If the treatment is medically indicated the patient or substitute decision-maker who has an understanding of the benefits and risks of this and other options can make an informed decision. http://www.bcmj.org/sites/default/files/BCMJ_54_Vol6_cohp.pdf