Now Dr. Smith, a palliative care specialist at the University of California, San Francisco, who also practices at the San Francisco Veterans Affairs Medical Center, and two co-authors are urging another change, one they acknowledge would "radically alter" the way health care professionals communicate with their very old patients. In a recent article¹ ... they suggested offering to discuss "overall prognosis," doctorspeak for probable life expectancy and the likelihood of death, with patients who don't have terminal illnesses. The researchers favor broaching the subject with anyone who has a life expectancy of less than 10 years or has reached age 85. "Advanced age itself is the greatest predictor of poor prognosis," Dr. Smith [said] in an interview. By age 85, the article points out, the average remaining life expectancy for Americans is six years. An 85-year-old has a 75 percent chance of living another three years, but only a one in four chance of surviving for 10. http://newoldage.blogs.nytimes.com/2011/12/29/the-unspoken-diagnosis-old-age/

1. "Discussing overall prognosis with the very elderly," New England Journal of Medicine, 2011; 365(26):2149-2151. http://www.nejm.org/doi/full/10.1056/NEJMp1109990

Few would argue with the merits of such an aim. Few also would argue that current evidence points to serious inequalities; at a global level, the lack of palliative care provision in many settings remains a fundamental issue. However, even within countries with well-developed palliative care, differential access has been reported for patients as a result of characteristics including age, ethnicity and socioeconomic status. This has led to the widespread assumption that there is inequitable provision of care. This may indeed be the case. However, for the presence of inequity to be determined, a few key theoretical concepts need to be understood. http://pmj.sagepub.com/content/26/1/5.extract

Men, for all our famed reluctance to discuss our feelings, are probably not much worse than women when it comes to handling the losses suffered by our friends. Both genders are liable to shun the bereaved person or to say things that are unhelpful. "Shun" may seem like an unfairly strong word, but if enough people avoid talking to a bereaved person because they don't know what to say, the effect can be that they feel shunned. I think that we want people to get over their grief because their grief upsets us. It reminds us of our own approaching death; it reminds us also that our whole world can be ruptured by the absence of another person; and the closest we can get to a return to normality is for the bereaved person to get over their loss and back to normality – our normality, that is, because for the grieving person the old normality is no longer possible. http://www.irishtimes.com/newspaper/health/2011/1213/1224308996677.html

When these decisions are concerned to [sic] palliative and end-of-life care, ethical dilemmas or problems may occur (e.g., decisions related to place of care and death, decisions regarding therapeutic interventions for symptom control, decisions about withholding and/or withdrawing treatments, decisions considering truth disclosure and communication, decisions considering patients' autonomy and self-determination, decisions related to the justice and resource distribution). Besides these problems, even though palliative care principles reject interventions in order to postpone or hasten death, issues such as medical futility, euthanasia and physician assisted suicide need to be reflected and discussed. http://omicsgroup.org/journals/JPCM/JPCM-1-e101.pdf (351 KB)

N.B. Footnoted are several recent articles on specific ethical and legal aspects of end of life care.

Earlier this year, a pair of influential bioethicists argued in an essay in The New Republic that the amount of money the country spends on Medicare is unsustainable.¹ With senior citizens the fastest-growing age group in the country, they say, the only way to control the ballooning costs is to try to bring the entire population up to a life expectancy of 80 and stop using most expensive technologies and medicines to extend life beyond that, even if some people will die. The Medicare program – unlike health plans in other countries – is not permitted to factor in the price of medical services, only the health benefit to the patient. No proposal is being discussed to change that. But Sherwin Nuland and Daniel Callahan believe there should be. "If you want to save all lives, you're in trouble," said Callahan, co-founder of The Hastings Center, a bioethics research institute in New York, and a faculty member at Harvard Medical School, in an interview. "And if you want to save all lives at any cost, you're really in trouble." Callahan and co-author Nuland, a retired professor of surgery at Yale School of Medicine who wrote the best-selling How We Die, were both 80 when the article was published. "We need to stop thinking of medicine as an all-out war against death, because death always wins," said Callahan. http://www.chicagotribune.com/health/ct-x-surgery-for-old-20111130,0,4147104.story

1. "The quagmire: How American medicine is destroying itself," The New Republic, 19 May 2011. http://www.tnr.com/article/economy/magazine/88631/american-medicine-health-care-costs?passthru=ZDY1YmFhOTg2YzhmMWE2Njg2MTMzNmM1OWUyYmUyMDQ

The survey posed a fictitious living will with and without additional clarification in the form of code status. An emergent patient care scenario was then presented that included medical history and signs/symptoms. Respondents were asked to assign a code status and choose appropriate intervention. Seven hundred sixty-eight faculty and residents at accredited training centers in 34 states responded. At baseline, 22% denoted "full code" as the code status for a typical living will, and 36% equated "full care" with a code status DNR. Adding clinical context improved correct responses by 21%. Specifying code status further improved correct interpretation by 28% to 34%. Treatment decisions were either improved 12-17% by adding code status ('Full Code,' 'Hospice Care') or worsened 22% ('DNR'). Misunder-standing of advance directives is a nationwide problem. Addition of code status may help to resolve the problem. Further research is required to ensure safety, understanding, and appropriate care to patients. http://www.jem-journal.com/article/S0736-4679(11)00853-5/abstract

Despite these sentiments, many physicians responded that they have some hesitations about palliative care and that there are barriers to its full adoption. Notably, the poll ... also found a dramatic "generation gap" in physicians' education and training on palliative care. Seventy-three percent of physicians age 39 or younger report "a great deal" or "some" exposure to palliative care during medical school compared to 36% of those age 40-49, 23% of those age 50-59, and only 6% of those age 60 or older. The poll found that 79% of physicians think the health care system spends too much trying to extend life while 21% believes the system should do whatever it takes. Many physicians also reported that they received little training on operational and financial aspects of palliative care and that they would like more on those topics. http://capsules.kaiserhealthnews.org/index.php/2011/11/physicians-push-for-more-palliative-care-despite-barriers/

This article proposes five desiderata [desired things] for laws at the end of life. It uses the emerging Australian jurisprudence of end-of-life decision making to test and examine the desiderata. The article also proposes that poorly drafted and confusing laws may have a deleterious effect on patient care. These nomoigenic (law-caused) harms can be avoided by adherence to the five desiderata of death law. http://www.publichealthjrnl.com/article/S0033-3506(11)00311-8/abstract

A leading textbook calls slow codes "dishonest, crass dissimulation, and unethical." A medical sociologist describes them as "deplorable, dishonest and inconsistent with established ethical principles." Nevertheless, the authors believe that slow codes may be appropriate and ethically defensible in situations in which cardiopulmonary resuscitation (CPR) is likely to be ineffective, the family decision makers understand and accept that death is inevitable, and those family members cannot bring themselves to consent or even assent to a do-not-resuscitate (DNR) order. In such cases, they argue, physicians may best serve both the patient and the family by having a carefully ambiguous discussion about end-of-life options and then providing resuscitation efforts that are less vigorous or prolonged than usual. http://www.tandfonline.com/doi/abs/10.1080/15265161.2011.603793

N.B. This issue of the American Journal of Bioethics includes several articles on the issue of "slow codes." Contents page: http://www.tandfonline.com/toc/uajb20/current

It will provide important information for the key services – the National Health Service, care homes and hospices – that care for people at the end of their lives, to help improve people's experiences at this sensitive time. The survey, which has been commissioned by the Department of Health is being sent to 49,000 people across England – one in seven of all those who registered a death between November 2010 and June 2011 – seeking their views on the care that their loved one received, as well as the care and support they were given themselves. This survey will provide an opportunity for those who have cared for a loved one at the end of their life to make a real contribution to improving services for others. http://www.ons.gov.uk/ons/rel/mro/news-release/national-survey-of-bereaved/index.html

Let's say this elixir were found to decrease the pain and nausea of cancer patients, improve the sleep and energy of heart failure patients, prolong the lives of people with kidney failure, drive down healthcare expenditures and ease the burdens of caregivers? Those are the promises of a fledgling medical specialty called palliative care – not a new drug but a new way of treating patients who are living, often for years, with acute or chronic Illnesses that are life-threatening. If palliative care were a pill, government regulators would very likely approve it for the U.S. market. Federal healthcare insurance programs would quickly agree to pay physicians and hospitals for treating patients with the new therapy. And patients would make it a blockbuster drug in no time flat. Yet uncertainties cloud the prospects for palliative care. Among the unanswered questions: Who will pay for these services, where will this new field's workforce come from, and what is it – cost savings or compassion – that drives this new branch of medicine? http://www.latimes.com/health/la-he-palliative-care-20111024,0,4249424.story

The Fine Gael leader made the remarks at the Dublin Forum on End of Life conference in the capital. Kenny urged delegates to "think about, prepare for and discuss" their eventual death in a keynote speech. He told the conference that: "Preparing for the end of life, difficult as it is to contemplate, helps avoid shock and confusion, and brings with it the capacity to reflect. Thinking ahead brings choice and a sense of dignity to death." http://www.irishcentral.com/news/Irish-Prime-Minister-urges-people-to-prepare-for-death---131778833.html

For patients with chronic kidney disease, a gruelling regime of dialysis three times a week was once the only treatment option. But thanks to an innovative approach being used in Leeds, those for whom the drawbacks may outweigh the benefits have another option. They can choose to have their condition managed without going onto lifelong dialysis, giving them a better quality of life in the time they have left. The project was started by Dr. Lynne Russon, who sees patients at St James's Hospital and works alongside medics specialising in kidney disease. http://www.yorkshireeveningpost.co.uk/news/news-features/consumer/health_taking_skills_beyond_the_hospice_1_3837352

But the judge found that the woman, identified only as "M," did have "some positive experiences" and crucially there was a "reasonable prospect" that those experiences could be extended. In a landmark 43,000 word judgment, he acknowledged that prior to her illness, "M" had told her family that she would not want to be kept alive in such circumstances, but said that such statements were "informal" and therefore not legally binding. The judge added: "The factor which does carry substantial weight, in my judgment, is the preservation of life. Although not an absolute rule, the law regards the preservation of life as a fundamental principle." http://www.telegraph.co.uk

Judges to hear applications to withdraw life-sustaining treatment in public

Solicitors Journal | Online report – 29 September 2011 – Cases concerned with the withdrawing of life-sustaining treatment from patients in a minimally conscious or vegetative state should all be heard by the Court of Protection and ... in public, a senior judge ruled. http://www.solicitorsjournal.com/

This article then examines two promising [Canadian] Charter [of Human Rights & Freedoms] challenges. The first based on section 15, argues that since palliative care is provided unevenly to those who require it, the equality provisions in the Charter could compel equitable provision of palliative care to Canadians with life-limiting illnesses. The second is based on section 7, and argues that failure to provide palliative care may impose an unacceptable level of psychological stress on those at the end of their life. The article concludes with a look at the limitations of a Charter challenging, including justification under section 1 of the Charter, and the lack of empirical evidence necessary to conclusively prove the arguments advanced under sections 15 and 7. http://works.bepress.com (621 KB)

How is a complete family health history and three-generation pedigree useful to hospice and palliative care nurses? All of these questions have the common thread of genetic and genomic factors that influence health. The purpose of this article [is to provide an] update on selected aspects in genetics and genomics that impact palliative care and provide resources such as the U.S. Surgeon General's Family History Initiative¹ including the online assessment program that results in an organized family pedigree. The selected topics are pharmacogenomics of morphine, family history, and palliative care for persons with genetic disorders. http://journals.lww.com/jhpn/Abstract/2011/09000/Palliative_Care_in_the_Genomic_Era.9.aspx

1. U.S. Surgeon General's Family History Initiative website: http://www.hhs.gov/familyhistory/

Brian Cuthbertson and Gordon Rubenfeld, physicians at the Sunnybrook Health Sciences Centre in Toronto, Ontario, sought leave to appeal from the Supreme Court in August to overturn lower court decisions that prohibit them from withdrawing mechanical ventilation from a 59-year-old mechanical engineer in a persistent vegetative state. The patient, Hassan Rasouli, has been in a coma since he contracted bacterial meningitis following brain surgery at Sunnybrook in October 2010. Cuthbertson and Rubenfeld want to withdraw life support to prevent Rasouli from dying a slow death from complications of being bedridden. But Rasouli's family has refused their consent, arguing that his religious beliefs should be respected and that, as a devout Shia Muslim, he should be kept alive on mechanical support "until all signs of life are gone." Ontario's Superior Court of Justice, and subsequently the Court of Appeal for Ontario, have ruled that the withdrawal of life support constitutes a form of "treatment" under the province's Health Care Consent Act and therefore, the consent of Rasouli's wife is required. "If her consent is not forthcoming, the appellants' proposal must be referred" to the province's Consent & Capacity Board, jointly wrote Justices Michael Moldaver and Janet Simmons. Cuthbertson and Rosenfeld argue the case raises several critical questions of law. http://www.cmaj.ca/site/earlyreleases/4theRecord.xhtml

He categorizes disagreements between doctors and patients in four ways. Groll's taxonomy shows that physicians can offer non-medical recommendations without violating patient autonomy. This simple concept sometimes gets lost in spirited defenses of autonomy that view doctors as inordinately powerful and patients as inordinately susceptible to authority. http://www.thehastingscenter.org/Publications/HCR/Detail.aspx?id=5492

1. "What health Care providers know: A taxonomy of clinical disagreement." Some assume that respecting patient autonomy means clinicians should refrain from expressing opinions about what's in a patient's best interests. But depending on the kind of medical decision the patient is making, a clinician may have expertise vital to the patient's best interests—and even if she doesn't, she may still know what is best. http://www.thehastingscenter.org/Publications/HCR/Detail.aspx?id=5503

They have been given official notice to do so before. In 2000, the Department of Health in England reminded local [health] trusts they must have appropriate policies. This followed warnings from doctors that junior staff lacked proper guidance and training, and from the charity Age Concern that older people were being written off. These warnings came after Jill Baker, 67, from Southampton, who had stomach cancer and was being treated for septicaemia, discovered after leaving hospital that a "do not resuscitate" order had been written in her notes by a junior doctor. Neither she nor her husband had been consulted. http://www.guardian.co.uk/society/2011/aug/26/do-not-resuscitate-medical-patient

The U.K.'s General Medical Council says there is no obligation to prolong life if doctors think treatment not in patient's best interests.

They shared a liver and a defective heart. If their mother elected to continue her pregnancy, they were likely to be stillborn or to live less than a day. Each day they survived would require aggressive, and expensive, intervention. The prognosis was unyieldingly poor. Their mother was determined to give them a chance, and their medical team did everything it could. The twins spent their entire lives – 16 months, 11 days – at the University of Illinois Medical Center at Chicago, where they died last Thursday. The bill for their medical care: $5.6 million. It was an extraordinary case, but the issues it raised are increasingly familiar. How much should be done, and at what cost, to prolong a life? Medical advances present doctors with that dilemma every day, whether they deal with critically ill infants or adults with end-stage cancer. When does the cost outweigh the medical benefit, and who decides? http://www.chicagotribune.com/news/opinion/editorials/ct-edit-twins-20110818,0,2528437.story

Seven out of ten people say they would like to die at home but more than half die in hospitals, even though many had no medical need to be there. Many people are not getting their end of life wishes met, it says, when end of life care should be seen as a must-get-right priority for every organisation involved. Although more than half of people (59%) are scared of dying in hospital, only a minority are able currently to die at home or elsewhere in the community. http://www.dailymail.co.uk/health/article-2024740/Final-wishes-dying-ignored-half-die-hospital-despite-needing-there.html?ito=feeds-newsxml

1. "No dress rehearsals: Four key priorities to ensure we get end of life care right first time," National Council for Palliative Care and the Dying Matters Coalition, August 2011. http://www.dyingmatters.org/news/ncpc-calls-new-deal-dying

Many consider themselves bridges between life and death, whichever way you are walking across the bridge. Because when it comes down to it, as they explain, the transitions of birth and death bring up the same concerns and needs: education, misconceptions, fears, changes in family dynamics, uncertainties, hope, faith, planning, rituals and the loss of control. And, while the popularity of home births continues to grow, so is the choice of home deaths – and even home funerals and burials, although this latter movement remains relatively rare. Both home-based options have battled legal hurdles, societal stigmas and safety concerns. http://www.dailycamera.com/health-fitness/ci_18623805

Caregivers who worked outside the home, those who cared for two parents concurrently, those with the least amount of outside assistance, and caregivers who spent a longer period of time caregiving reported the highest levels of health problems and overall burden. Caregivers stated a need for more support from hospice agencies, more education on caregiver training, and more public education about hospice services. Faith played a positive role in alleviating caregiver burden. Early identification, intervention, education and coordination of services may help to alleviate caregiver burden, which will improve quality of life for both patient and caregiver. http://ajh.sagepub.com/content/early/2011/07/22/1049909111416494.abstract

Students and patients both appear to benefit from the experience of bedside teaching. However, bedside teaching with medical students and palliative care patients presents a number of challenges for the patient, the learner and the educator. Key considerations for bedside teaching in the palliative care context include: sensitivity to "protection," of palliative care patients by colleagues in relation to their involvement in bedside teaching; consideration of the patient's carer/relative as they will often be present for prolonged periods at the bedside; a maximum of one or two students (not the "up to six" traditionally used in this type of teaching); multiple short encounters with several patients as opposed to a longer encounter with one patient; and sensitivity to the potential impact of the session on the learner as undergraduate medical students and junior doctors may find that while worthwhile and rewarding, the teaching session is also personally emotionally challenging. http://spcare.bmj.com/content/early/2011/07/18/bmjspcare-2011-000035.abstract

Without a DNR order, if the heart or breathing stops, caregivers will provide full resuscitation. If a DNR order is in place, they will keep patients comfortable and allow them to die naturally. The study found that when a surrogate had to evaluate whether or not to sign a DNR, the decision process took significantly longer than when patients decided for themselves. That's important because the patients who had designated a surrogate were sicker and the decision whether to resuscitate might arise sooner. Among the patients who died, those with a surrogate had a shorter time period between writing the DNR order and time of death compared to patients who made their own decisions. http://blogs.wsj.com/health/2011/07/11/delays-are-frequent-when-surrogates-make-dnr-decisions/?mod=google_news_blog

1. "Timing of do-not-resuscitate orders for hospitalized older adults who require a surrogate decision-maker," Journal of the American Geriatrics Society, online article published 7 July 2011. http://onlinelibrary.wiley.com/doi/10.1111/j.1532-5415.2011.03480.x/abstract

He was on a ventilator and in a coma, and further treatment would have done him more harm than good, the doctors believed. They thought it was time to let him go. The parents disagreed. And that disagreement guaranteed the family's place at the center of a decade-old fight pitting Texas doctors and hospitals against lawmakers and activists, over how long is too long to care for a patient who appears certain to die. The fight dates back to 1999, and focuses on a narrow but emotionally volatile and unique section of the Texas's advance-directives law. Under that law, doctors have the right to halt treatment when they no longer believe they're acting in a patient's best interest. If the patient's family disagrees, the case goes before a hospital ethics panel. It's a process unique to Texas, experts say, the only state to offer a "legal safe harbor" for doctors who end treatment to medically futile patients. http://blogs.dallasobserver.com/unfairpark/2011/07/how_long_should_texas_docs_tre.php

Although the benefit is intended for patients who have no more than six months to live, 19% now receive hospice services for longer, according to the Medicare Payment Advisory Commission, or MedPAC, an independent Congressional oversight panel. In 2009, 10% of patients remained in hospice beyond seven months. Once a patient is enrolled in hospice, Medicare pays a flat fee ranging from $147 to $856 a day, depending on the level of care, regardless of whether a hospice actually provides services. A primary concern of MedPAC is that this payment method encourages hospices to seek out patients likely to live longer. Commercial hospices in particular tend to have longer-staying patients. "The financial incentives do in fact dictate behavior," said Eugene Goldenberg, a research analyst. "It's a lucrative business, at least under the current reimbursement system." In response, Medicare has adopted a restriction: It won't pay for hospice beyond six months unless a physician or nurse practitioner visits the patient and attests that his or her condition is still terminal. But this requirement, part of the health care law passed last year, has provoked a backlash. http://www.nytimes.com/2011/06/28/health/28hospice.html?_r=1&ref=hospicecare