I've been reading the "New Old Age" blog in the New York Times for a couple of months now. It covers issues of care for the elderly.
Two blog postings are included below. First, Thursday's entry provides a list of end-of-life "last resorts" from Dr. Timothy Quill, director of the palliative care program at the University of Rochester. Some local support group members, facing the end of life, have used the four "last resorts" on the list. Second, is a post about the "slow medicine" movement from May 2008.
http://newoldage.blogs.nytimes.com/2008 ... -calculus/
(you may have to register to read this article on the New York Times; registration is free)
The New Old Age: Caring and Coping
November 6, 2008, 1:50 pm
At the End of Life, a Delicate Calculus
By Jane Gross
On Tuesday, Washington state joined Oregon as the second in the nation where physicians are allowed to prescribe lethal doses of medication to terminally ill men and women who want to hasten their own deaths. But the remedies available to suffering patients have expanded dramatically in the 11 years since the Oregon measure took effect, one expert recently noted, and the question of whether doctors should help patients die is far more nuanced than it once was.
The Washington State proposition, Initiative 1000 (PDF), passed by a margin of 59 to 41 percent, and like the Oregon measure, which withstood several legal challenges, contains many safeguards intended to prevent hasty and ill-considered decisions. Patients requesting this assistance must be mentally competent, residents of the state, have six months or less to live according to two physicians, wait 15 days after their initial request and then repeat that request both orally and in writing. They must be capable of administering the lethal medication themselves and agree to counseling if their physicians request it. In addition, these patients also must be informed by their health care providers of other feasible alternatives.
In the view of Dr. Timothy E. Quill, director of the palliative care program at the University of Rochester, these options have expanded and gained acceptance in medical circles over the past decade. In 1997, in two important cases (Dr. Quill was a plaintiff in one), the U.S. Supreme Court ruled there was no constitutional right to physician-assisted suicide and upheld a prohibition against it. But in the same ruling, the justices conceded that terminally ill patients are entitled to aggressive pain management, even if high doses of opiates or barbiturates have the âdouble effectâ of hastening death.
That seemed a footnote at the time to the larger issue, but it arguably cracked open the door to those other feasible options, which Dr. Quill and other end-of-life experts refer to as âlast resortsâ in jurisdictions where it is a crime for physicians to assist in dying.
Dr. Quillâs views on physician-assisted death â a term preferred by many palliative care doctors and right-to-die organizations â are outlined in two essays published by the Hastings Center, the nationâs oldest bioethics research institute. One, entitled âPhysician-Assisted Death in the United States: Are the Existing âLast Resortsâ Enough?â appeared in the centerâs bimonthly report this fall. The other, intended to be a resource for policymakers, political candidates and journalists, is one of 36 topics framed and amplified in the centerâs more recent âBioethics Briefing Book.â
In these articles, Dr. Quill enumerated âlast resortâ options in the order he advises they be considered, both because of what is involved in each practice and because of the degree of acceptance among ethicists, legal experts and the general public. The essays were written, obviously, before the voting in Washington State. Dr. Quill considered it âa good time to review areas of progress in palliative and end-of-life care and consider whether [laws or ballot measures of this type] are either necessary or desirable.â
He concludes with a cautious âyesâ but makes a compelling case that adding physician-assisted death to the repertoire is not, for him, the singular solution it was when he made history by publishing an account in a medical journal about his own role in a patientâs death.
First and foremost, Dr. Quill and others say, all terminally ill patients should have access to state-of-the art palliative care, both to relieve pain and other symptoms and to provide emotional support to patients and families. Often delivered as part of hospice, palliative care has come of age in the last decade: it is now a board-certified sub-specialty, Dr. Quill noted, offered in a growing number of teaching and community hospitals.
Dr. Quill recommended that a palliative care consultation be mandatory before anyone considers the following âlast resorts,â which he listed from least controversial to most:
1. In the rare cases where pain and suffering remain intractable, despite top-notch palliative care, the next option should be pain management so aggressive that it may well hasten death, although that is not the primary intention. This is the doctrine of âdouble effect,â articulated by the U.S. Supreme Courtâs decision in 1997 and relatively uncontroversial.
2. Rarely challenged, too, is a patientâs right to forgo life-sustaining therapies or discontinue them once begun. This likely would include feeding tubes, ventilators and other life-support machinery. But it could also include chemotherapy, blood pressure medication, insulin or garden-variety antibiotics. The legal and ethical argument here is that we all have the right to autonomy and bodily integrity, and to control what is done or not done to us.
3. Also considered by some to be a matter of bodily integrity is V.S.E.D., short for âvoluntarily stopping eating and drinking.â Dr. Quill believes this is âmore morally complexâ choice than the second option, because over the last decade the practice has expanded beyond those with end-stage cancer or Alzheimerâs disease â who often lose interest in food or forget how to eat and drink â to people who are not âactively dyingâ but nevertheless have had enough of disability or dependence. V.S.E.D. requires âconsiderable resolve,â Dr. Quill said, because thirst can be persistent and death can take as long as three weeks. Physicians do not âassistâ these patients but support them with symptom relief for dry mouth or sedation in the event of delirium or other complicating discomforts.
4. The âlast, last resort,â and by far the most controversial of the legal methods, is sedation to the point of unconsciousness, also known as palliative or terminal sedation. Endorsed earlier this year by the American Medical Associationâs Council on Ethical and Judicial Affairs, it involves an explicit decision to render a patient unconscious if pain can be controlled no other way. Food and fluid may be discontinued, and in one to three days the patient dies of dehydration.
According to data from Oregon, 341 people have died in 11 years as a result of lethal doses of medication provided by a physician. That amounts to 1 in 1,000 deaths overall per year, according to the state health department, although 1 in 50 dying patients have discussed the possibility with their doctors and one in six with their families. âMost patients will be reassured by the possibility of an escape,â Dr. Quill said, âand will never need to activate that escape.â
By contrast, when physician-assisted death is a covert operation, far more people seem to grab the chance. Data on this secret but apparently widespread practice is hard to collect, because physicians can be charged and prosecuted for a crime. But in the mid-1990s a team of researchers, Dr. Quill among them, tried to research the question using techniques that protected anonymity. The researchers found that between 1 and 2 percent of deaths per year had been aided, illegally, by physicians through assisted suicide or euthanasia â 10 to 20 times the rate observed in Oregon since legalization of this practice.
This article is about "slow medicine," which includes hospice.
May 5, 2008
For the Elderly, Being Heard About Lifeâs End
By Jane Gross
New York Times
HANOVER, N.H. â Edie Gieg, 85, strides ahead of people half her age and plays a fast-paced game of tennis. But when it comes to health care, she is a champion of âslow medicine,â an approach that encourages less aggressive â and less costly â care at the end of life.
Grounded in research at the Dartmouth Medical School, slow medicine encourages physicians to put on the brakes when considering care that may have high risks and limited rewards for the elderly, and it educates patients and families how to push back against emergency room trips and hospitalizations designed for those with treatable illnesses, not the inevitable erosion of advanced age.
Slow medicine, which shares with hospice care the goal of comfort rather than cure, is increasingly available in nursing homes, but for those living at home or in assisted living, a medical scare usually prompts a call to 911, with little opportunity to choose otherwise.
At the end of her husbandâs life, Ms. Gieg was spared these extreme options because she lives in Kendal at Hanover, a retirement community affiliated with Dartmouth Medical School that has become a laboratory for the slow medicine movement. At Kendal, it is possible â even routine â for residents to say âNoâ to hospitalization, tests, surgery, medication or nutrition.
Charley Gieg, 86 at the time, was suffering from a heart problem, an intestinal disorder and the early stages of Alzheimerâs disease when doctors suspected he also had throat cancer.
A specialist outlined what he was facing: biopsies, anesthesia, surgery, radiation or chemotherapy. Ms. Gieg doubted he had the resilience to bounce back. She worried, instead, that such treatments would accelerate his downward trajectory, ushering in a prolonged period of decline and dependence. This is what the Giegs said they feared even more than dying, what some call âdeath by intensive care.â
Such fears are rarely shared among old people, health care professionals or family members, because etiquette discourages it. But at Kendal â which offers a continuum of care, from independent living apartments to a nursing home â death and dying is central to the conversation from Day 1.
So it was natural for Ms. Gieg to stay in touch with Joanne Sandberg-Cook, a nurse practitioner there, during her husbandâs out-of-town consultation.
âI think that it is imperative that none of this be rushed!â Ms. Sandberg-Cook wrote in an e-mail message to Ms. Gieg. The doctor the Giegs had chosen, the nurse explained, âtends to be a âdo-it-nowâ kind of guy.â But the Giegsâ circumstances âdemand the time to think about all the what-ifs.â
Ms. Sandberg-Cook asked whether Mr. Gieg would want treatment if he was found to have cancer. If not, why go through a biopsy, which might further weaken his voice? Or risk anesthesia, which could accelerate her husbandâs dementia?
âThose are the very questions on my mind, too,â Ms. Gieg replied. The Giegs took their time, opted for no further tests or treatment, and Charley came back to the retirement community to die.
Such decisions are not made lightly, and not without debate, especially in an aging society.
Many in their 80s and 90s â and their boomer children â want to pull out all the stops to stay alive, and doctors get paid for doing a procedure, not discussing whether it should be done. The costliest patients â the elderly with chronic illnesses â are the only group with universal health coverage under Medicare, leading to huge federal expenditures that experts agree are unsustainable as boomers age.
Most of that money is spent at certain academic medical centers, which offer the most advanced tests, the newest remedies, the most renowned specialists. According to the Dartmouth Health Atlas, which ranks hospitals on the cost and quantity of medical care to elderly patients, New York University Medical Center in Manhattan, for instance, spends $105,000 on an elderly patient with multiple chronic conditions during the last two years of life; U.C.L.A. Medical Center spends $94,000. By contrast, the Mayo Clinicâs main teaching hospital in Rochester, Minn., spends $53, 432.
The chief medical officer at U.C.L.A., Dr. Tom Rosenthal, said that aggressive treatment for the elderly at acute care hospitals can be âinhumane,â and that once a patient and family were drawn into that system, âitâs really hard to pull back from it.â
âThe culture has a built-in bias that everything that can be done will be done,â Dr. Rosenthal said, adding that the pace of a hospital also discourages âreal heart-to-heart discussions.â
Beginning that conversation earlier, as they do at Kendal, he said, âsounds like fundamentally the right way to practice.â
That means explaining that elderly people are rarely saved from cardiac arrest by CPR, or advising women with broken hips that they may never walk again, with or without surgery, unless they can stand physical therapy.
âItâs almost an accident when someone gets what they want,â said Dr. Mark B. McClellan, a former administrator of Medicare and now at the Brookings Institution. âPersonal control, quality of life and the opportunity to make good decisions is not automatic in our system. We have to do better.â
The term slow medicine was coined by Dr. Dennis McCullough, a Dartmouth geriatrician, Kendalâs founding medical director and author of âMy Mother, Your Mother: Embracing Slow Medicine, the Compassionate Approach to Caring for Your Aging Loved One.â
Among the hard truths, he said, is that 9 of 10 people who live into their 80s will wind up unable to take care of themselves, either because of frailty or dementia. âEveryone thinks theyâll be the lucky one, but we canât go along with that myth,â Dr. McCullough said.
Ms. Sandberg-Cook agrees. âIf youâre never again going to live independently or face an indeterminate period in a disabled state, you may have to reorganize your thinking,â she said. âYou need to understand what you face, what you most want to avoid and what you most want to happen.â
Kendal begins by asking newcomers whether they want to be resuscitated or go to the hospital and under what circumstances. âThey give me an amazingly puzzled look, like âWhy wouldnât I?â â said Brenda Jordan, Kendalâs second nurse practitioner.
She replies with CPR survival statistics: A 2002 study, published in the journal Heart, found that fewer than 2 percent of people in their 80s and 90s who had been resuscitated for cardiac arrest at home lived for one month. âThey about fall out of their chairs when they find out the extent to which weâll go to let people choose,â Ms. Jordan said.
Kendal, where the average age is 84, is generally not a place where people want heroics. Dr. George Klabaugh, 88, a resident and retired internist, found himself at the center of controversy a few years back when he tried to revive a 93-year-old neighbor who had collapsed from cardiac arrest during a theatrical performance. Dr. Klabaugh, who was unaware that the man had a âDo Not Resuscitateâ order, said he regretted his âautomatic reaction,â a vestige of a professional training that predisposes most physicians to aggressive care.
Ms. Jordan surveyed Kendal residents and found only one that wanted CPR â Brad Dewey, 92, who dismissed the statistics. âI want them to try anyway,â he said. âOur daughter saved a man on a tennis court. Whoâs to say I wonât recover?â
Some of the 400 residents, who pay $120,000 to $400,000 for an entry fee, and monthly rent from $2,000, which includes all health care, pursue no-holds-barred treatment longer than others. One woman, for example, arrived with cardiac and pulmonary disease but was still capable of living in her own apartment. First, she had cataract surgery that left her vision worse. Next, during surgery to replace a worn-out artificial hip, her thigh bone snapped. She spent a year in bed and wound up with blood clots. Then she broke the other leg.
Only then, Ms. Jordan said, did the woman decide to forgo further surgery or hospitalizations. The woman was too ill to be interviewed.
Some of those most in tune with slow medicine are the adult children who watch a parentâs daily decline. Suzanne Brian, for one, was grateful that her father, then 88 and debilitated by congestive heart failure, was able to stop medications to end his life.
âIt wasnât âOh, you have to do this or do that,â â Ms. Brian said. âIt was my fatherâs choice. He could have changed his mind at any time. They slowly weaned him from the meds and he was comfortable the whole time. All he wanted was honor and dignity, and thatâs what he got.â
Here's a review of Dr. McCullough's book:
http://www.nytimes.com/2008/02/26/healt ... books.html