One of them was from Daniel Callahan, cofounder of the Hastings Center, who was interviewed in the article. Callahan, who has been writing about end-of-life issues for more than 40 years, was so impressed by the article that he proposed to Krieger that they "reverse roles" – he would interview her about her article and, particularly, the response that it got. "I would like to ask you, on looking back, at what point should the life-sustaining efforts have been stopped," he told her. "It was as if people just wanted permission to talk about dying," she told Callahan. "I opened the door." The interview, which includes Krieger's advice to people in a situation similar to the one she described, appears in Bioethics Forum.² http://www.thehastingscenter.org/News/Detail.aspx?id=5734

1. "The cost of dying: It's hard to reject care even as costs soar," San Jose Mercury News, 6 February 2012 (noted in Media Watch dated 13 February 2012). http://www.mercurynews.com/health/ci_19898736?source=rss

2. "The trial of 'Death by Medicine': An interview with Lisa Krieger," Bioethics Forum, The Hastings Center, 13 February 2012. http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=5730&blogid=140

That's the price of a home for a struggling family. Enough to put a future doctor through medical school. Hundreds of prenatal visits. Thousands of vaccinations. My father's story – the final days of a frail 88-year-old with advancing dementia at the end of a long and rewarding life – poses a modern dilemma: Just because it's possible to prolong a life, should we? It's a story of people doing their best in a system that's built to save our loved ones. And it's a reminder of the impossibility, during a crisis, to assess costs and benefits that aren't at all obvious. This was the lesson of my father's passing: It is easy to get quick access to world-class treatment. It's much harder to reject it. http://www.mercurynews.com/health/ci_19898736?source=rss

In contrast, when families stated that referral was "too late," their reasons were centered on concerns with the health care providers' role in decision making, with the leading concerns being inadequate physician communication, not recognizing the patient as dying, or problematic hospice delays in referral from the nursing home or home health agency. Despite the patient refusing an earlier hospice referral, five family members believed the referral was "too late." Whereas family members identified expected concerns with communication, more than one in three stated an earlier hospice referral was not possible. http://www.jpsmjournal.com/article/S0885-3924(11)00766-4/abstract

And after struggling for several years with determining their own patients' prognoses, a group of physicians at the University of California in San Francisco set out to collect and study all the research that had been done on so-called prognostic indexes, tools that help with determining general prognosis in older patients.¹ Given the growing use of age-based treatment and preventive care guidelines, the doctors assumed there would be plenty of data to help decide whether, for example, an 80-year-old patient might live long enough to benefit from a colonoscopy, a cancer screening procedure that can have its own set of complications. But they found little. Prognosis was rarely, if ever, alluded to in the most popular medical textbooks and on clinical Web sites used by practicing physicians. Even the widely used medical database PubMed, maintained by the National Library of Medicine, had no specific indexing category for prognosis, making finding any published study on the subject like searching for a book in a library before the Dewey Decimal System. While the researchers were finally able to single out 16 indexes that hold promise in helping doctors predict how long a patient might live, there was "insufficient evidence at this time" to recommend any of them for widespread clinical use. http://well.blogs.nytimes.com/2012/01/19/why-doctors-cant-predict-how-long-a-patient-will-live/

1. 'Prognostic indices for older adults,' American Medical Association Journal, 2012;307(2):182-192 (noted in Media Watch dated 16 January 2012) http://jama.ama-assn.org/content/307/2/182.short

Executive director of Palliative Care Council, South Australia, Tracey Watters, believes that the recently announced ... Senate inquiry presents the sector with a "once in a lifetime" opportunity to tell the government all that is good, bad and ugly about the current state of palliative care services. But, she said, if this opportunity is not seized and the government does not hear the real life stories of older people, their families and friends who have been denied access to vital, quality and timely palliative care services – and the sad tales about the consequences – then the palliative care sector will be at a loss. "From a consumer's point of view, there seems to be an inordinate number of barriers to accessing specialist palliative care services," Ms. Watters said. "My worry is that in the growth and development of palliative care as a specialty is almost taking it away from its grass-roots [objective], which is to care for people with a terminal illness and help them make use of their time until they die." http://www.australianageingagenda.com.au/2012/01/19/article/The-good-bad-and-the-ugly/FIPNYKFJUZ.html

Patients often do not understand their decisions or they may change their mind without changing their advance care directives. Likewise, concordance between patients' wishes and the understanding of the physicians and surrogate decision makers who need to represent these wishes is disappointingly poor. A few recent reports show encouraging outcomes from advance care planning, but most studies indicate that the procedure is ineffective in protecting patients from unwanted treatments and may even undermine autonomy by leading to choices that do not reflect patient values, goals, and preferences. Safeguards for advance care planning should be put in place, such as encouraging physicians to err on the side of preserving life when advance care directives are unclear, requiring a trained advisor to review non-emergent patient choices to limit life-sustaining treatment, training of clinicians in conducting such conversations, and structured discussion formats that first address values and goals rather than particular life-sustaining procedures. http://www.ncbi.nlm.nih.gov/pubmed/22237664

Providers believed that concerns about medicolegal issues impaired their ability to forgo treatments where risks outweigh benefits. Additionally, the culture of emergency medicine – to provide stabilization of acute medical emergencies – was sometimes at odds with the culture of palliative care, which balances quality of life with the burdens of invasive treatments. Some providers also felt it was the primary physician's responsibility, and not their own, to address goals of care. Finally, some providers expressed concern that palliative care consultation was only available on weekdays during daytime hours. Automatic consultation based on pre-determined criteria was suggested as a way to avoid conflicts with patients and family. http://www.jpsmjournal.com/article/S0885-3924(11)00272-7/abstract

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

DNR discussions do not occur frequently enough and occur too late in the course of patients' illnesses to allow their participation in resuscitation decisions. Furthermore, many physicians fail to provide adequate information to allow patients or surrogates to make informed decisions and inappropriately extrapolate DNR orders to limit other treatments. Because these failings are primarily due to systemic factors that result in deficient physician behaviors, the authors propose strategies to target these factors including changing the hospital culture, reforming hospital policies on DNR discussions, mandating provider communication skills training, and using financial incentives. http://www.springerlink.com/content/1175n7538010103m/

The NEoLCIN aims to improve the collection and analysis of data about end of life care services. It provides valuable information to government, service providers, commissioners and researchers on adults approaching the end of life and on the quality, volume and costs of care provided to them. Such intelligence will help drive improvements in the quality and productivity of services. This document highlights what the network has achieved in its first year of operation. http://www.endoflifecare-intelligence.org.uk/news/default.aspx

An evidence-based approach is provided for the clinician by breaking this complex clinical problem into a series of more focused clinical questions and subsequently answering them through a critical appraisal of the existing medical literature. Belief in miracles is found to be common in the U.S. and is an important determinant of how decisions are made for those with advanced illness. There is a growing amount of evidence that suggests end-of-life outcomes improve with the provision of spiritual support from medical teams, as well as with a proactive approach to medical decision making that values statements given by patients and family members. http://www.jpsmjournal.com/article/S0885-3924(11)00243-0/abstract

An informal survey of Canadian case law indicates that courts have been all over the map on the issue, which has recently resurfaced in the headlines as part of a dispute between two physicians at the Sunnybrook Health Sciences Centre in Toronto, Ontario, and the family of a comatose man. The decision, which could radically alter how end-of-life decisions must be made in Ontario, pivots on the question of who should call the shots at end-of-life, an issue that has divided physicians, ethicists and legal minds for decades. The Ontario Court of Appeal is now deliberating whether to overturn a Superior Court ruling in April that would require doctors to obtain consent from patients or their substitute decision-makers to withdraw life-sustaining treatment, or failing that, take all disputed cases to the province's Consent & Capacity Board for mediation. The physicians believe that the lower court ruling would effectively force doctors to continue treatment as long as a patient or patient's surrogate desires, even in cases where it may not provide medical benefit or may even harm the patient, explains Mark Handelman, a Toronto lawyer intervening in the case and former adjudicator for the Consent & Capacity Board. "The fear is they'll end up with an intensive care unit full of people whose wishes, values or beliefs mean they have to be kept alive to suffer." Conversely, if ... [the] ... appeal is successful, it will set a major precedent that will allow Ontario doctors to make unilateral decisions about treatment at end-of-life, with or without consideration for patients' wishes, values or religious beliefs, Handelman argues. "I would be astonished to ever see another end-of-life case go before the Consent & Capacity Board. Why bother?" http://www.cmaj.ca/content/183/10/E617.short?rss=1 (Open Access)

Lauren Vogel. Legal ambiguities surround authority to make end-of-life decisions. CMAJ July 12, 2011 vol. 183 no. 10 First published June 6, 2011. Download PDF http://www.cmaj.ca/content/183/10/E617.full.pdf+html

This medical focus often over-rode other important aspects of the consultations, especially existential elements. The doctors actively directed the focus away from their patients' existential concerns onto medical facts and rarely addressed the personal aspects of a patient's condition, treating them in a biomechanical manner. At the same time, however, the doctors attended to their patients with courteousness, displaying a polite and friendly attitude and emphasizing the relationship between them. The study suggests that the main failing of patient-doctor encounters is not a lack of courteous manners, but the moral offence patients experience when existential concerns are ignored. Improving doctors' social and communication skills cannot resolve this moral problem, which appears to be intrinsically bound to modern medical practice. http://jme.bmj.com/content/early/2011/05/24/jme.2010.041988.abstract

Hassan Rasouli's doctors at Sunnybrook Heath Sciences Centre believe he is in a persistent vegetative state and are appealing a Superior Court ruling last month that said if they can't get permission from Rasouli's family to remove him from a ventilator, they must seek consent from Ontario's Consent & Capacity Board. If the court rules in favour of the doctors, it's unlikely other end-of-life cases would go before the Board, says a lawyer involved with the case. "The underlying issue is whether or not doctors have the right to withdraw treatment that they view to be of no benefit to the patient, or in other words, at end of life, futile," said Mark Handelman, who spent a decade adjudicating on the Board. http://www.breitbart.com/article.php?id=cp_iqul541au5&show_article=1

N.B. Ontario is the only province in Canada with a Consent & Capacity Board, which usually hears a case and issues a ruling in about a week.

The main task of those who worked to improve the situation centered on changing each of those variables, assuming that would do the job. But it has worked to a moderate extent only and the problem is not fully solved. The main omission has been a failure to confront the medical enterprise itself, which believes in endless progress and conducts a war against death. Only a change in those underlying values can bring about further significant change. http://onlinelibrary.wiley.com/doi/10.1111/j.1748-720X.2011.00581.x/abstract

Journal of Law, Medicine & Ethics, 2011;39(2):215-223. "The value of life at the end of life: A critical assessment of hope and other factors." Low opportunity cost, weak influence of quality of life in the face of death, the social value of life extension to others, shifting psychological reference points, and hope have been proposed as factors to explain why people apparently perceive marginal life extension at the end of life to have disproportionately greater value than its length. http://onlinelibrary.wiley.com/doi/10.1111/j.1748-720X.2011.00590.x/abstract

The influence of the family on the decisions of the competent adult patient has scarcely been discussed in English medical law. Dominated by the bioethical principle of individual autonomy, the law concentrates on the patient and takes an exclusionary stand regarding relatives. The aim of this article is to examine the attitude of English law towards the involvement of relatives when patients make decisions, and to investigate the views and experiences of patients and their relatives in reality. The findings [of this qualitative study] reflect a relational approach to patient autonomy. When making decisions about treatment, patients needed to know that their relatives would support them no matter what they decided. However, exceptional cases which demonstrated substantial familial influence suggest that the law should secure the patient's interest in making their own decisions. http://medlaw.oxfordjournals.org/content/early/2011/05/03/medlaw.fwr008.abstract

Most family caregivers will adequately respond to their role and even identify positive aspects associated with their experience. However, a considerable proportion of family caregivers will experience poor psychological, social, financial, spiritual and physical well-being and some will also suffer from prolonged grief. It is clear that many family caregivers have unmet needs and would like more information, education, preparation and personal support to assist them in the caregiving role. There is also a shortage of evidence-based strategies to guide health professionals to provide optimal support whilst the caregiver is providing care and after the patient's death. [The] research team [at the Centre for Palliative Care] ... has developed Clinical Practice Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients. The guidelines were developed for multidisciplinary health care professionals and clinical services commonly involved in caring for adult patients receiving palliative care in a variety of care sites throughout Australia. The guidelines may also prove valuable for the international palliative care community and for generalist health care providers who may occasionally care for palliative care patients. Download the guideline from http://www.centreforpallcare.org/assets/uploads/CP-Guidelines_web.pdf (630 KB)

About seven in 10 Americans die with such an order, which instructs healthcare workers not to use life-prolonging treatment if a patient's heart or breathing stops. But other situations that aren't necessarily covered in the do-not-resuscitate [DNR] ... orders may also be worth considering, researchers say. Read more…

1. 'High mortality in surgical patients with do-not-resuscitate orders,' Archives of Surgery, published online 18 April 2011. http://archsurg.ama-assn.org/cgi/content/short/archsurg.2011.69

The study, which looked at federal data from 2007, the most recent year available, found that 46% of chronically ill patients in the Manhattan hospital region, which also covers most of Brooklyn and Staten Island, were being treated at hospitals when they died, as opposed to dying at home or in hospices or nursing homes. That rate was the highest in the country. The region covering Long Island and Queens was second, with 42%; the Bronx region was third, at 40%; and the New Brunswick, N.J., region was fourth, at 39%. Nationally, 28% of hospitals' chronic patients were being treated at hospitals when they died. Dr. Elliott S. Fisher, a co-author of the new study, said that some of the disparity might be driven by financial incentives for keeping patients in New York-area hospitals while neglecting the true wishes of the patients. Read more…

1. Trends and Variation in End-of-Life Care for Medicare Beneficiaries with Severe Chronic Illness, A report of the Dartmouth Atlas Project, Dartmouth Institute for Health Policy & Clinical Practice, April 2011. http://www.dartmouthatlas.org/downloads/reports/EOL_Trend_Report_0411.pdf

The guidelines, shared exclusively with Nursing Times, outlines how bodies should be treated, how to communicate with bereaved families, and legal requirements following a patient's death. They have been developed by specialist nurses working with the National Health Service National End of Life Care Programme in response to a lack of training and guidance for the profession on the emotionally challenging work of caring for patients after death. An investigation by Nursing Times last year suggested procedures ... were not carried out properly for more than half of deceased hospital patients. Read more…

The father lamented their final hours together were tainted by the medical team's vigorous attempts to keep the woman alive. "He said, 'Those buggers were poking and prodding her with needles the day before she died," recalled Prof. Fassbender... "He was very bitter about that." A growing body of thought suggests such assertive treatment is, in fact, often inappropriate for patients facing imminent death from cancer or other terminal diseases. A new Ontario study reveals, however, that cancer patients are increasingly undergoing emergency-department treatment, chemotherapy and other "aggressive" care in the last few weeks of their lives.¹ Close to one in four patients studied received potentially aggressive care in their last month... Care of all kinds in the last months of life generally costs the health-care system billions of dollars a year, other research has suggested. The oncologist who led the Ontario study, Dr. Craig Earle ... said hospice beds and palliative services in patients' homes are often not available. He and other experts advocate new government spending on palliative care, designed to lessen pain and discomfort and address psychological and spiritual issues for patients whose illness can no longer be treated. Resources are not the only issue...read more…

1. Journal of Clinical Oncology | Online article – 14 March 2011 – 'Trends in the aggressiveness of end-of-Life cancer care in the universal health care system of Ontario, Canada.' Among 227,161 patients, 22.4% experienced at least one incident of potentially aggressive EOL [end of life] cancer care. Multivariable analyses showed that with each successive year, patients were significantly more likely to encounter some aggressive intervention. Aggressiveness of cancer care near the EOL is increasing over time in Ontario, Canada, although overall rates were lower than in the U.S. N.B. Noted in Media Watch dated 21 March 2011.

It is unique in that the approach has a strong counseling base in providing the palliative service, rather than major reliance on advance practice nurses or palliative physicians. The Medical Center of Central Georgia employs master's prepared counselors who spend the hours needed to assist families in making difficult end-of-life decisions. The growth of the program over seven years is staggering with the outcomes far exceeding even the predicted volume from the Center to Advance Palliative Care. http://www.liebertonline.com/doi/abs/10.1089/jpm.2010.0432

The home – in all its varying forms – is a place considered 'normal' by its occupants, where ownership of, and control over, its boundaries rests with those considered as subject to the paternalistic practices of conventional approaches to palliative care. By extension, the networks formed by the linking of these homes and their occupants create a community that 'owns' the business of dying amongst its numbers. A model of palliative care that integrates the principles and practices of health promotion and public health is proposed as one approach to normalising the conceptualisation of dying and the responses of communities to their dying members. Whose business is dying? http://epress.lib.uts.edu.au/ojs/index.php/csrj/article/viewFile/1971/2159

The increased use of palliative care services saved the hospital about $700,000 in fiscal year 2008, because of shorter lengths of stay and patients opting for less-heroic care, among other factors. St. John Providence Health System now screens patients admitted to St. John and its other four hospitals for palliative care needs, and is incorporating screening into its electronic health record system. A multi-disciplinary working group developed [and tested] a ... checklist... After a year, they streamlined the checklist down to nine items, any one of which triggered a consult. In 2006, before it was implemented, there were 444 palliative care consults; the number increased to 742 in 2007 and to 952 in 2008. The time from admission to consult dropped from about 9 days to about 6. The success led to a system-wide rollout of palliative care screening, with the nine triggers ... now assessed in patients admitted to the health system's five hospitals. http://www.internalmedicinenews.com

As a sector, we need to do better, be smarter, and ensure we are delivering a handful of key messages on behalf of the people who benefit from our services. To date, no one single outcome measure has been developed that captures the net benefit of involving hospice or palliative care services. Yet funders are looking for reasons to justify the investment in these services (or, more frighteningly, to disinvest). The benefits from provision and receipt of palliative care should be captured from the four main stakeholders: patients, their caregivers, involved clinical staff, and the health system(s) through which that care is provided. Smith and colleagues explore the issues which are important to caregivers when reflecting back on the death of a loved one.¹ Although 14 domains were explored covering the last month of the person's life and one global rating was subsequently assessed, the data make things clear. First, there is wide variation even among bereaved family members about what constitutes quality care at the end of life. Second, the factors identified by caregivers may differ from those identified by patients and health professionals; such differences have been reported before.² The important contribution by the work of Smith and associates is that it begins to quantify and to weight the relative importance of key aspects of care at the end of life by people who have experienced (as recipients of care themselves from hospice and palliative care services) and provided that care (as caregivers for people who are dying). http://www.liebertonline.com/doi/pdfplus/10.1089/jpm.2011.9722

1. 'Can we make reports of end-of-life care quality more consumer-focused? Results of a nationwide quality measurement program,' Journal of Palliative Medicine, 2011;14(3):301-307. http://www.liebertonline.com/doi/abs/10.1089/jpm.2010.0321 N.B. Noted in Media Watch dated 7 February 2011.

2. 'Factors considered important at the end of life by patients, family, physicians, and other care Providers,' Journal of the American Medical Association, 2000;284(19):2476-2482. http://jama.ama-assn.org/content/284/19/2476.abstract

While medical, legal and ethical support for the best interests of "Baby Joseph" is widespread, the hospital believes that since this has become a public issue, the public has a "right to know" the truth so they can form their opinions based on fact, not innuendo, speculation or untruths. http://www.newswire.ca/en/releases/archive/February2011/27/c6400.html N.B. The Ontario Consent & Capacity Board ruling and report regarding "Baby Joseph" can be found at: http://www.canlii.org/en/on/onccb/doc/2011/2011canlii7955/2011canlii7955.html

The relative told Moules the woman was carrying an urn full of her daughter's ashes everywhere she went; that if you met her for lunch she'd get a table for three; that, in a nutshell, the family was concerned about how she was coping. Sure enough, when Moules later met the client for lunch, they ate with the ashes at the table. "So, are you wondering why I invited you out?" Moules asked. "Oh no, I know," the woman said. "Somebody phoned you, they're worried about me. They think I'm crazy." Moules probed further: "Do you think it's crazy?" she asked. "No," said the woman. "F–k them. This is the last human, physical connection that I have to her and I'll put her down when I'm ready to put her down." For Moules, who now lectures on grief as a nursing prof[essor] at the University of Calgary, the young mother's story helps illustrate the sometimes paradoxical relationship many of us have with the emotions accompanying a loved one's death. "There's all these cultural expectations of grief that are contradictory," she says. "One is, 'Get over it, you should be over it by now!' And the other is, 'What's wrong with you that you aren't continuing to feel it? Didn't you love the person?' And we turn all those judgments inward." read more…

Volunteers were asked to indicate whether or not they considered each item (e.g., "lend personal belongings to a patient or family," "agree to be a patient's power of attorney," "attend/go into a patient's medical appointment") to be something they should not do and to indicate whether or not they have ever done it. On the basis of the responses, the authors distinguished between "definite boundary issues" (things volunteers should never do, for example, "accept money from a patient or family"), "potential boundary issues" (things volunteers should stop and think twice about doing, for example, "accept a gift from a patient or family"), and "questionable boundary issues" (things volunteers should be aware of doing, for example, "give your home phone number to a patient or family"). The implications of these findings for training volunteers are discussed and the need for clear and unambiguous organizational policies and procedures to preserve boundaries is stressed. Without clear policies, etc., community-based hospice programs may be putting themselves at legal risk. read more…

Medics use the sedative midazolam as part of a highly controversial "pathway to death" care plan for people judged by doctors to be in the last hours of their lives. But patients' leaders warned ... that the widespread use of the Liverpool Care Pathway (LCP) in Scotland's NHS [National Health Service] is robbing pensioners of the chance of life. They claim that, for some old folk, being put on the LCP is effectively a death sentence. Supporters of the LCP, including the Scottish Government, argue that it is a humane and well thought-out way to make the dying comfortable at the end of life. Crisis Ministers told all Scotland's health boards in 2008 that use of LCP was "good practice." But some senior doctors fear that patients who could recover are wrongly being put on LCP. And they say that once people are on the "pathway to death," the drugs they are given will mask any signs that they are getting better. read more…

It is argued that effective team functioning can be enhanced through the development of interdisciplinary team training programs and policies, resources and structures that provide support for the interdisciplinary team model. read more…

In a study of advance directive laws across all U.S. states, researchers found that the documents used in end-of-life planning were written in legalese that the average American would be hard-pressed to understand. And most states, the study found, had practical restrictions that could make it difficult for many people to complete an advance directive. The study comes as Congress debates the future of health care reform, a debate that has included false rumors about "death panels" that would determine which Americans would receive care at the end of life. Among the most affected by existing laws would be people with limited literacy and those in nursing homes or other institutions who do not have family or friends, the researchers report in the Annals of Internal Medicine [see sidebar].1 Advance directives are legal documents that allow people to state their wishes for end-of-life care, in the event they become too sick to make their own medical decisions. One example is a "living will," which spells out the types of life-prolonging measures a person does or does not want – whether, for instance, you want to be put on a ventilator if you cannot breathe on your own, or if you want doctors to attempt resuscitation if your heart stops. A 2007 Harris poll found that about two in five Americans have such living wills. Another type of advance directive is medical power of attorney, where people choose a "proxy" who will make healthcare decisions for them if they cannot do so themselves. In the U.S., states each have their own laws on advance directives. But a common thread is that the laws set up obstacles that could deter people from end-of-life planning, according to the researchers on the new study. read more…

One in 10 people across the community provided hands-on care for someone close to them dying an expected death in the five years before being interviewed. One in 13 former caregivers indicated that they would not provide such care again irrespective of time since the person's death and despite no reported differences identified in unmet needs between those who would and would not care again. A further one in six would only "probably care again." These data suggest that assessment of willingness to care needs to be considered by clinical teams, especially in the elderly. Despite most active caregivers being willing to provide care again, a proportion would not. read more…

The Geelong Hospital senior intensive care doctor put it succinctly when he said: "We can prolong life but [for these people] we cannot restore health." At the risk of appearing to be unfeeling, there's also the issue of cost. Not surprisingly, hospital costs increase proportionately with proximity to death, although it's not as simple as that. Lesley Russell of the Menzies Centre for Health Policy at the University of Sydney and the Centre for American Progress in Washington, DC, reported in early 2009 that in Australia in 2007, end-of-life hospital care averaged about $13,500 per person, with about 40% spent in the last month of life. The biggest costs are incurred caring for people aged 65 to 74. As people age further, hospital costs fall, so for people aged 95 or older hospital costs are less than half those of their younger counterparts. This is because a large majority of people aged 95 or more die outside of hospitals. A critical cost consideration, however, is the estimate that about 10% of all health costs in Australia go to providing procedures that people nearing the end of life don't want. While this shouldn't be seen solely as an economic issue, extending inappropriate care to one person generally delays or denies care to another. It's particularly difficult to accept this when many patients don't want the treatment they're getting. Any ethical assessment of these issues must therefore take this reality into account. People plan for so much in life but when it comes to addressing issues of end-of-life medical treatment and care, they shy away from doing so, either because they don't know how or because they'd rather put it off. But putting it off often results in treatment or heroic medical enterprise, which, given a choice, the patient probably wouldn't want. read more…

The 85-year-old died ... before a court could resolve whether the elderly man's Orthodox Jewish beliefs trump guidelines that give doctors the final say on withdrawing life-support. A long-awaited report, slated for release next year, may shed light on that question and put to rest how doctors and patients should resolve conflicts over end-of-life care. Officials [of the Winnipeg Regional Health Authority] launched the review after Golubchuk's eight-month fight to remain alive pitted a patient's right to continue treatment against Winnipeg physicians who argued continuing to care for the elderly man was "tantamount to torture." It's unclear whether the WRHA report will include new guidelines that supersede existing end-of-life guidelines that give doctors the final say. read more…