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 The Right to Know, Then to Say ‘No’;slow medicine 
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Post The Right to Know, Then to Say ‘No’;slow medicine
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. Today's entry is about new legislation in California called the "Terminal Patients’ Right to Know End-of-Life Options Act." Many in our local support group have died after "voluntary stopping of eating and drinking" (VSED). Apparently if you are considered terminally ill, an MD is supposed to review VSED with you, upon request. In the author's case, her mother stopped eating and drinking after the author did considerable research to determine that her mother could die comfortably and that this approach was considered legal. The author indicates she will discuss her mother's decision in future posts.

Here's a link to the NYT article and the full text:

http://newoldage.blogs.nytimes.com/2008 ... to-say-no/

The New Old Age: Caring and Coping
The New York Times
October 21, 2008, 6:04 am

The Right to Know, Then to Say ‘No’
By Jane Gross

Terminally ill patients in California are the first in the nation to have a legal right to information from their doctors, upon request, about end-of-life options, including hospice, palliative care, refusing or withdrawing life-prolonging treatments, and making the choice to refuse food and hydration.

The new legislation, called the Terminal Patients’ Right to Know End-of-Life Options Act and championed by the advocacy group Compassion and Choices, was signed into law last month by Gov. Arnold Schwarzenegger with the backing of the California Medical Association (C.M.A.), which had staunchly opposed a 1992 state ballot measure and a 2005 bill that would have permitted physician-assisted suicide, which is currently legal only in Oregon. (Voters in Washington state will cast ballots on a measure comparable to Oregon’s on Nov. 4.)

The C.M.A.’s support of the new law came only after the legislation was tweaked so that physicians were not required to volunteer such information unless asked, lest raising the subject unbidden seem like undue influence. The association also insisted that health care providers who are not comfortable complying with a patient’s wishes — say, to refuse a ventilator, to abandon chemotherapy or antibiotics, or to stop eating and drinking — be able to recuse themselves from hands-on care, provided they see to it that the patient is assigned to another professional who will support their wishes.

“Too many patients make the most important decision of their lives without being fully informed of their legal rights,” said Barbara Coombs Lee, president of Compassion and Choices. “This law serves as a national model for patients to receive the necessary information and power to influence the manner of death. It shifts physician-patient communication from a paternalistic model to a cooperative one.”

The law’s most likely effect will be to increase participation in hospice and palliative care and to move Californians into such programs earlier, since at present they often are unaware or poorly informed about these options. More controversial will be a patient’s right to refuse or discontinue medical treatment, along with food and water, with the goal of hastening death.

As some blog readers already know, this is how my mother ended her life, first refusing various medical tests and procedures, then routine treatment like antibiotics. After surviving several untreated bouts of pneumonia, she ultimately stopped all nutrition and hydration. Her evolving choices about which medical treatment to accept and which to refuse were discussed with the nursing home staff at regular family meetings, and none of her decisions was ever challenged.

But the subject of refusing food and hydration was never formally presented to her as an option, nor did we ask the staff about it. Rather, she and I hatched this plan ourselves, over the course of many discussions and after researching what is formally known as V.S.E.D., for “voluntary stopping of eating and drinking.” Both of us wanted to know what the actual dying would be like, in terms of suffering and duration, and how my mother would be kept comfortable. We also wanted to know if it was legal. Our reading satisfied us on both counts.

It’s worth noting that my mother (and others in her situation) would not be guaranteed end-of-life information even under California’s new right-to-know law. Why? Because being 87 years old, paralyzed, incontinent, unable to speak and losing the ability to swallow (the result of many small strokes) did not make for a terminal diagnosis. Indeed, my mother conceivably could have lived for several more years, given her hardy constitution. But that wasn’t what she wanted, and so we found out what we needed to know about V.S.E.D. without the help of professionals.

Compassion and Choices would have provided that guidance. The group’s Web site says these end-of-life consultations are for those with terminal illnesses, but after ample discussion and evaluation, they told me they probably would have guided my family through the necessary steps. http://www.compassionandchoices.org/services/index.php

I would expect some readers to find such information valuable and reassuring, based on the volume of comments already received here from elderly people desperate for a dignified and legal way out when their bodies or minds have failed and they are totally dependent on others. I also expect some of you to be disturbed and disapproving of my mother’s choice, my support of it, and the nursing home’s cooperation.

In later posts I will describe the process, for my mother, for me and for the staff who provided hands-on care. I’ll also discuss the ethical debate, which I was unaware of at the time, about whether this manner of death is substantially different from the forms of physician-assisted suicide that remain illegal everywhere but in Oregon.


Last edited by robin on Sun Jun 27, 2010 12:21 am, edited 1 time in total.



Wed Oct 22, 2008 12:56 am
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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 “double effect” 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 “last resorts” in jurisdictions where it is a crime for physicians to assist in dying.

Dr. Quill’s views on physician-assisted death — a term preferred by many palliative care doctors and right-to-die organizations — are outlined in two essays published by the Hastings Center, the nation’s oldest bioethics research institute. One, entitled “Physician-Assisted Death in the United States: Are the Existing ‘Last Resorts’ Enough?” appeared in the center’s 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 center’s more recent “Bioethics Briefing Book.”

In these articles, Dr. Quill enumerated “last resort” 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 “a 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.”

He concludes with a cautious “yes” 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 patient’s 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 “last resorts,” 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 “double effect,” articulated by the U.S. Supreme Court’s decision in 1997 and relatively uncontroversial.

2. Rarely challenged, too, is a patient’s 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 “voluntarily stopping eating and drinking.” Dr. Quill believes this is “more morally complex” choice than the second option, because over the last decade the practice has expanded beyond those with end-stage cancer or Alzheimer’s disease — who often lose interest in food or forget how to eat and drink — to people who are not “actively dying” but nevertheless have had enough of disability or dependence. V.S.E.D. requires “considerable resolve,” Dr. Quill said, because thirst can be persistent and death can take as long as three weeks. Physicians do not “assist” these patients but support them with symptom relief for dry mouth or sedation in the event of delirium or other complicating discomforts.

4. The “last, last resort,” 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 Association’s 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. “Most patients will be reassured by the possibility of an escape,” Dr. Quill said, “and will never need to activate that escape.”

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 — 10 to 20 times the rate observed in Oregon since legalization of this practice.



This article is about "slow medicine," which includes hospice.

http://www.nytimes.com/2008/05/05/health/05slow.html

May 5, 2008
For the Elderly, Being Heard About Life’s End
By Jane Gross
New York Times

HANOVER, N.H. — 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 “slow medicine,” an approach that encourages less aggressive — and less costly — 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 husband’s 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 — even routine — for residents to say “No” 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 Alzheimer’s 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 “death by intensive care.”

Such fears are rarely shared among old people, health care professionals or family members, because etiquette discourages it. But at Kendal — which offers a continuum of care, from independent living apartments to a nursing home — 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 husband’s out-of-town consultation.

“I think that it is imperative that none of this be rushed!” Ms. Sandberg-Cook wrote in an e-mail message to Ms. Gieg. The doctor the Giegs had chosen, the nurse explained, “tends to be a ‘do-it-now’ kind of guy.” But the Giegs’ circumstances “demand the time to think about all the what-ifs.”

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 husband’s dementia?

“Those are the very questions on my mind, too,” 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 — and their boomer children — 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 — the elderly with chronic illnesses — 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 Clinic’s 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 “inhumane,” and that once a patient and family were drawn into that system, “it’s really hard to pull back from it.”

“The culture has a built-in bias that everything that can be done will be done,” Dr. Rosenthal said, adding that the pace of a hospital also discourages “real heart-to-heart discussions.”

Beginning that conversation earlier, as they do at Kendal, he said, “sounds like fundamentally the right way to practice.”

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.

“It’s almost an accident when someone gets what they want,” said Dr. Mark B. McClellan, a former administrator of Medicare and now at the Brookings Institution. “Personal control, quality of life and the opportunity to make good decisions is not automatic in our system. We have to do better.”

The term slow medicine was coined by Dr. Dennis McCullough, a Dartmouth geriatrician, Kendal’s founding medical director and author of “My Mother, Your Mother: Embracing Slow Medicine, the Compassionate Approach to Caring for Your Aging Loved One.”

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. “Everyone thinks they’ll be the lucky one, but we can’t go along with that myth,” Dr. McCullough said.

Ms. Sandberg-Cook agrees. “If you’re never again going to live independently or face an indeterminate period in a disabled state, you may have to reorganize your thinking,” she said. “You need to understand what you face, what you most want to avoid and what you most want to happen.”

Kendal begins by asking newcomers whether they want to be resuscitated or go to the hospital and under what circumstances. “They give me an amazingly puzzled look, like ‘Why wouldn’t I?’ “ said Brenda Jordan, Kendal’s 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. “They about fall out of their chairs when they find out the extent to which we’ll go to let people choose,” 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 “Do Not Resuscitate” order, said he regretted his “automatic reaction,” 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 — Brad Dewey, 92, who dismissed the statistics. “I want them to try anyway,” he said. “Our daughter saved a man on a tennis court. Who’s to say I won’t recover?”

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 parent’s 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.

“It wasn’t ‘Oh, you have to do this or do that,’ “ Ms. Brian said. “It was my father’s 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 that’s what he got.”


Here's a review of Dr. McCullough's book:
http://www.nytimes.com/2008/02/26/healt ... books.html


Sat Nov 08, 2008 2:25 am
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A long-ish article was in a recent New York Times Magazine about the author's mother deciding to have a pacemaker implanted in the demented father's chest....and the mother later regretting this decision. The author makes the point that the "system rewarded nobody for saying 'no' or even 'wait'."

See:
http://www.nytimes.com/2010/06/20/magaz ... ker-t.html


Sun Jun 27, 2010 12:25 am
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An excellent article, Robin. It makes me think back on the cardiologist who badgered--and I do not use the term lightly--my husband into consenting to a pacemaker implant two years ago when he was hospitalized for another condition. I asked the doctor privately in the hallway if he knew my husband had severe dementia. He did not. I don't even know if he had read his chart!!! He was certainly unconcerned with any ethical considerations. I must admit that I, too, was badgered into signing my consent, as well. In my sleep-deprived and stressed-out state, I was too worn out to resist the tactics they used. [In front of my husband, I was asked point blank if I wanted my husband to die!]

I was relieved that the procedure went well and I can't deny I have been glad to have my husband around these past two years but I will never forgive this doctor for consigning my husband to years of deterioration--and who knows how many more?--that he might have otherwise been spared. And I can't forgive myself for being intimidated into signing the consent.

Though we have several physicians in our family, I would still like to see people stand up to physicians and quit treating them like demi-gods.

Thanks for sharing the story. It literally made me weep. I hope it will inspire others to be braver than we were.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Jun 27, 2010 1:02 am
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Glad it worked out in your husband's case...


Sun Jun 27, 2010 1:11 am
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Quote:
Glad it worked out in your husband's case...
I guess my point was that it was a bad idea. :(

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Jun 27, 2010 9:31 am
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I should add to the above account that my husband had a complete cardiac workup by his cardiologist at home [we were away from home] just months prior to this 'necessary' pacemaker implant and his heart was found to be completely normal.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Jun 27, 2010 1:39 pm
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Right, you thought it was a bad idea but your husband doesn't seem to have suffered from having it done??


Sun Jun 27, 2010 3:55 pm
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Having the pacemaker implanted may or may not have made any difference in how long he will live with LBD. However, he does suffer from this horrible disease and it might enable him to suffer longer than necessary. My main point in the post was to tell people that there are physicians to whom any intervention is a good--and profitable--one regardless of whether it is necessary or helpful and they need to firmly resist the bullying employed by some of them.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Jun 27, 2010 4:04 pm
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Pat - I'm so sorry you felt bullied into having the pacemaker put in. That was so unethical on the dr's part to do and say what he did to you. Some drs. (and others) accuse those of us who support "slow medicine" and "death with dignity" with trying to "play God", but that is exactly what they do every day. And for the most part, I'm thankful for great healthcare. But until there is a cure for dementia, it is extremely unethical to me for drs. to want to pull out all the stops and continue keeping people alive whose lives will become worse, with no hope for any improvement. I think it is unconscionable.
I have a friend whose 93 year old dad had advanced Alz., had gone blind, could barely hear, and the dr. convinced my friend to have a new pacemaker or battery implanted in his dad! My friend was under the impression that he'd be arrested for elderly abuse if he didn't agree to the procedure. His dad died 6 years after the surgery, having NO quality of life, didn't even recognize his children or friends, and having gone through about $2 million in ALF and medical costs after about 15 years in an ALF. (He had 24/7 aids living in his room at the ALF for about the last 10 years.) I'm sure there are 10s of thousands of similar stories.
If he hadn't had his own money, it would have been on the taxpayers' dime. We treat our pets more humanely than we treat our LOs who are in pain or have no quality of life. We need to do better.
Thanks for posting these articles, Robin. Lynn


Mon Jun 28, 2010 12:06 pm
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