Category: End of Life Care

End-of-Life Health Care – NYTimes.com

Fortunately, advance planning for end-of-life decisions has been going on for years and is continuing to spread despite the demagogy on the issue in 2009. There is good evidence that, done properly, it can greatly increase the likelihood that patients will get the care they really want. And, as a secondary benefit, their choices may help reduce the cost of health care as well.

Many people sign living wills that specify the care they want as death nears and powers of attorney that authorize relatives or trusted surrogates to make decisions if they become incapacitated. Those standard devices have been greatly improved in recent years by adding medical orders signed by a doctor — known as Physician Orders for Life Sustaining Treatment, or POLST — to ensure that a patient’s wishes are followed, and not misplaced or too vague for family members to be sure what a comatose patient would want.

Fifteen states, including New York, have already enacted laws or regulations to authorize use of these forms. Similar efforts are under development in another 28 states. The laws generally allow medical institutions to decide whether to offer the forms and always allow patients and families to decide voluntarily whether to use them.

With these physician orders, the doctor, or in some states a nurse practitioner or physician assistant, leads conversations with patients, family members and surrogates to determine whether a patient with advanced illness wants aggressive life-sustaining treatment, a limited intervention or simply palliative or hospice care.

Taking Responsibility for Death – NYTimes.com:

My mother drew up her directives in the 1980s, when she was a volunteer in the critical care lounge of her local hospital. She once watched, appalled, as an adult daughter threw a coffeepot at her brother for suggesting that their comatose mother’s respirator be turned off. Because the siblings could not agree and the patient had no living will, she was kept hooked up to machines for another two weeks at a cost (then) of nearly $80,000 to Medicare and $20,000 to her family — even though her doctors agreed there was no hope.

The worst imaginable horror for my mother was that she might be kept alive by expensive and painful procedures when she no longer had a functioning brain. She was equally horrified by the idea of family fights around her deathbed. “I don’t want one of you throwing a coffeepot at the other,” she told us in a half-joking, half-serious fashion.

There is a clear contradiction between the value that American society places on personal choice and Americans’ reluctance to make their own decisions, insofar as possible, about the care they will receive as death nears. Obviously, no one likes to think about sickness and death. But the politicization of end-of-life planning and its entwinement with religion-based culture wars provide extra, irrational obstacles to thinking ahead when it matters most.

As someone over 65, I do not consider it my duty to die for the convenience of society. I do consider it my duty, to myself and younger generations, to follow the example my mother set by doing everything in my power to ensure that I will never be the object of medical intervention that cannot restore my life but can only prolong a costly living death.

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‘How Many of You Expect to Die?’ – NYTimes.com:

The third option, death following extended frailty and dementia, is everyone’s worst nightmare, an interminable and humiliating series of losses for the patient, and an exhausting and potentially bankrupting ordeal for the family. Approximately 40 percent of Americans, generally past age 85, follow this course, said Dr. Lynn, and the percentage will grow with improvements in prevention and treatment of cancer, heart disease and pulmonary disease.

These are the elderly who for years on end must depend on the care of loved ones, usually adult daughters, or the kindness of strangers, the aides who care for them at home or in nursing facilities. This was my mother’s fate, and she articulated it with mordant humor: The reward for living past age 85 and avoiding all the killer diseases, she said, is that you get to rot to death instead.

Those suffering from physical frailty, as she was, lose the ability to walk, to dress themselves or to move from bed to wheelchair without a Hoyer lift and the strong backs of aides earning so little that many qualify for food stamps. These patients, often referred to as the old-old, require diapers, spoon-feeding and frequent repositioning in bed to avoid bedsores. Those with dementia, most often Alzheimer’s disease, lose short-term memory, fail to recognize loved ones, get lost without constant supervision and eventually forget how to speak and swallow.

What all of these patients need, Dr. Lynn said, is custodial care, which can easily cost $100,000 a year and is not reimbursed by Medicare. The program was created in 1965 when hardly anyone lived this long.

“We’re doing this so badly because we’ve never been here before,” Dr. Lynn said. “But the care system we’ve got didn’t come down from the mountain. We made it up, and we can make it up better.”

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Palliative Care May Trump Heroic Measures in Life Expectancy | Miller-McCune Online

Another commentary regarding the NEJM Palliative Care article, health reform and a quote or two from me (Thanks, Joanne!)

Early palliative care may prolong survival, enhance quality of life in patients with advanced lung cancer.

The New York Times (8/19, A15, McNeil) reports that a trial “paid for by the American Society of Clinical Oncology and private philanthropy” appears to “shed new light on the effects of end-of-life care.” In fact, it “confirmed what…specialists had long suspected,” that is, patients with “terminal lung cancer who began receiving palliative care immediately upon diagnosis not only were happier, more mobile, and in less pain as the end neared, but they also lived nearly three months longer.” The paper appears in the New England Journal of Medicine.

Notably, “palliative care specialists lament that their image as the medical world’s grim reaper deprives patients and their families of care and support that can ease the burden of serious illnesses that exact a steep physical, psychological, and social toll,” the Boston Globe (8/19, A1, Smith) reports on its front page. “All too often, they said, patients and doctors outside their field equate palliative medicine with hospice care, even though hospice is the refuge for people who have stopped aggressive treatment and whose death is imminent.” But, “palliative care…is available at any juncture during a life-threatening illness and, at its core, is designed to make living with a serious ailment more comfortable, incorporating everything from exercise to counseling to pain medication.”

The current study illustrates that and is “one of the best tests yet of palliative care,” the AP (8/19, Marchione) reports. It should also “ease many fears about starting it soon after diagnosis, doctors say.” Researchers at the Massachusetts General Hospital (MGH) began their study by looking at “151 people newly diagnosed with cancer that had spread beyond the lung.”

Seventy-seven of the “newly diagnosed patients were assigned to receive palliative care along with the standard treatment for the cancer,” while the “other 74 patients received the standard treatment without palliative care,” the Los Angeles Times “Booster Shots” (8/18, Roan) blog reported. The team eventually discovered that “patients receiving palliative care…scored higher on measures of quality of life and enjoying the time they had left. They also were more likely to express their wishes regarding resuscitation at the end of life.”

What’s more, those “who received palliative care in addition to standard care had…a 50 percent lower rate of depression and they lived 2.5 months longer than patients not receiving palliative care early,” HealthDay (8/18, Doheny) reported.

MGH’s Jennifer S. Temel, MD, told WebMD (8/18, Mann), “We were surprised by the magnitude of impact that palliative care had on quality of life, which normally decreases over time in these cancer patients, and the magnitude of the impact it had on depression.” And, “the survival benefit was the most surprising thing,” she added. “Cancer care and palliative care are not mutually exclusive.” Bloomberg News (8/19, Cortez), the Wall Street Journal (8/18, Hobson) “Health Blog” and MedPage Today (8/18, Bankhead) also covered the study

Forum: Before you die, speak up:

I am an intensive care physician. My days are mostly spent working with a dedicated, caring team resuscitating people from septic shock and respiratory failure back to health.

Unfortunately, many of our patients, already near the end of life with serious advanced illnesses, would not want and will not benefit from these heroic measures that we’ve inflicted on them — but the paperwork and orders necessary to prevent them are not in place.

In these cases, we work, a bit too late, to put things right and to do right by these people who entrust us to do our best for them. We are privileged to help those who will get better and to comfort those who will not. But we can do better.

I wrote this a few years ago, but it has become pertinent again along with these pieces written by Gary Rotstein, health reporter for the Pittsburgh Post-Gazette:

End-of-life questions often go unasked

Disabled worry lives not valued

So now, they are bookmarked in the blog.

UPDATE: two recent op-eds in the Pittsburgh Post Gazette of note:

The last days of our lives: Our health-care system needs to provide better, more thoughtful end-of-life care.
Wednesday, August 26, 2009
By Dr. Robert Arnold and Nancy Zionts

Sunday Forum: Forget the euthanasia talk — end-of-life care is needed
It’s time to debunk the misconceptions about provisions in the health-care reform bill, says RAFAEL J. SCIULLO
Sunday, August 23, 2009

Health care reform: What is costly overuse, what is humane?:

This is the piece Betsy McCaughey read from on The Daily Show last night, regarding EOL care and the horrors of HR 3200.

“My problem, as a physician who has practiced medicine for decades, is that I just can’t predict with certainty what is end-of-life care, nor can I determine for another individual the meaning of ‘quality of life.'”

Well that’s the whole point, isn’t it? It s not the physicians choice it is the patient’s choice, the patient’s wishes that count. It is entirely the point of advance care planning and advance directives that it is up to the patient to decide what he or she wants. Our responsibility a physicians is to give them the best information that we can, imperfect as it is, and help them come to decisions that best reflect their wishes and goals.

And, no, we cannot predict with certainty when a person is exactly at the end of life – and I suspect that this author and Ms. M. would only except a definition of end of life as minutes away – but I do have a wealth of experience to go on, and I think it is unprofessional to allow families to cling to miracle scenarios for survival.

And here’s another gem:
“I would be loath to talk a person on dialysis or in a wheelchair from a stroke into forgoing antibiotics for a pneumonia that may itself be treatable.”

Well, so would I, because that is not the role of a physician, is it? Jeebus. Jude the Obtuse.

Ms. M. read this part:
“These and other provisions of the health choices act frankly scare me. As a physician, I took an oath long ago to put my patient’s interests above all else, but provisions in the bill have a quality of coerciveness that make me wonder if I can fulfill my oath.”

You have a higher duty to be honest with your patients and not blow smoke up their rears, telling them that this next chemo, this next procedure, this next indignity, is always worth it.

As I’m putting together this post, it infuriates me to consider countering this stupid, stupid, stupid, uninformed, heartless, obtuse rhetoric yet again.