Category Archives: End of Life

Copied below are excerpts from a Boston Globe article on the reluctance to discuss hospice perhaps due to the patients’ unrealistic outlook.

Robin

http://www.boston.com/news/local/massac … f_hospice/

Excerpts from:
Terminally ill patients delay talk of hospice
Study finds many have unrealistic outlook
By Kay Lazar, Boston Globe Staff
May 26, 2009

Americans tend to procrastinate when it comes to matters involving death and dying, but a Harvard Medical School study published yesterday finds that even many terminally ill patients and their doctors put off conversations about end-of-life choices.

The study, one of the largest to date on the issue, found that only about half of the 1,517 patients with metastasized lung cancer who were surveyed had discussed hospice care with their physician or healthcare provider within four to seven months of their diagnosis.

The vast majority of such patients do not survive two years.

Hospice care – which can be delivered in a home, hospital, or other facility – focuses on managing a patient’s pain and emotional and spiritual needs, rather than trying to cure the terminal illness.

For some ethnicities and races, the likelihood of a discussion about hospice was even lower. About 49 percent of African-Americans and 43 percent of Hispanics had a conversation with their physicians, the study found, compared with 53 percent of whites and 57 percent of Asians.

The longer a terminally ill patient expected to live, researchers discovered, the less likely the subject was to come up.

“Patients who had unrealistic expectations about how long they had to live were much less likely to talk about hospice with their doctor,” said Haiden Huskamp, a Harvard Medical School associate professor of healthcare policy and the study’s lead author. …

Huskamp theorizes that patients who said they had not discussed or considered hospice may not have fully understood their prognosis, or may be choosing to believe a rosier outcome. She also said that, in general, physicians are not well-trained to handle such delicate conversations.

Dr. JoAnne Nowak, 52, medical director of the Partners Hospice and Palliative Care program in Boston, said she is part of a generation that graduated from medical school when end-of-life care was not included in the curriculum. She spent 15 years as a family physician, before retraining and switching her specialty to hospice care in 1999.

“You have a lot of doctors out there who weren’t trained in these conversations about end of life or breaking any kind of bad news, whether it’s a prognosis or difficult treatment,” she said.

That is slowly changing, as more medical schools incorporate some training into the core curriculum.

Just last year, national regulators officially recognized hospice and palliative care as a board-certified specialty.

Still, Nowak said, most physicians find it easier to talk with a patient about chemotherapy options, rather than end-of-life choices and anxieties.

“What are your fears? Your hopes? What do you need to accomplish in the time that remains? Those are long and difficult conversations and doctors don’t have the time,” she said.

Nor are they adequately compensated, said Nowak and others. Health insurance companies typically reimburse doctors by the number of procedures they do, not by the time spent with patients.

There’s a good article in today’s New York Times about a randomized trial of palliative care vs. no palliative care for cancer patients. Here are excerpts:

* “Those getting palliative care from the start, the authors said, reported less depression and happier lives as measured on scales for pain, nausea, mobility, worry and other problems.”

* “Palliative care typically begins with a long conversation about what the patient with a terminal diagnosis wants out of his remaining life. It includes the options any oncologist addresses: surgery, chemotherapy and radiation and their side effects. But it also includes how much suffering a patient wishes to bear, effects on the family, and legal, insurance and religious issues. Teams focus on controlling pain, nausea, swelling, shortness of breath and other side effects; they also address patients’ worries and make sure they have help with making meals, dressing and bathing when not hospitalized.”

* “Hospice care is intensive palliative care including home nursing, but insurers and Medicare usually cover it only if the patient abandons medical treatment and two doctors certify that death is less than six months away.”

You can find a link to the full article here:

http://www.nytimes.com/2010/08/19/health/19care.html

There’s a thought-provoking article in the August 2010 issue of “The New Yorker” magazine on modern medicine being “good at staving off death with aggressive interventions — and bad at knowing when to focus, instead, on improving the days that terminal patients have left.”

Here are some excerpts:

* People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives.

* In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die.

* The difference between standard medical care and hospice is not the difference between treating and doing nothing… The difference was in your priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now. That means focussing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while. Hospice and palliative-care specialists aren’t much concerned about whether that makes people’s lives longer or shorter.

* It’s worth pausing to consider what had just happened. Step by step, Sara ended up on a fourth round of chemotherapy, one with a minuscule likelihood of altering the course of her disease and a great likelihood of causing debilitating side effects. An opportunity to prepare for the inevitable was forgone. And it all happened because of an assuredly normal circumstance: a patient and family unready to confront the reality of her disease.

“It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity,” [Stephen Jay Gould] wrote in his 1985 essay. “Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die—and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy—and I find nothing reproachable in those who rage mightily against the dying of the light.”

The fact that we may be shortening or worsening the time we have left hardly seems to register. We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do.

Two-thirds of the terminal-cancer patients in the Coping with Cancer study reported having had no discussion with their doctors about their goals for end-of-life care, despite being, on average, just four months from death.

“A family meeting is a procedure, and it requires no less skill than performing an operation,” said Dr. Susan Block.

According to Block, about two-thirds of patients are willing to undergo therapies they don’t want if that is what their loved ones want.

And here’s a link to this terrific article:

http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande?currentPage=all

ANNALS OF MEDICINE
LETTING GO
What should medicine do when it can’t save your life?
by Atul Gawande
The New Yorker
August 2, 2010

Robin

The New York Times (nytimes.org) seems to have a new series called “Months to Live,” where it address end-of-life issues.  An article for tomorrow’s paper is the first I’ve seen on the topic of sedating someone near death in the hopes that they die while sleeping.  We had one support group member who instructed both hospice and her husband to provide extensive sedation to her, and even spelled out what medication she wanted to be given (phenobarbitol and morphine).

I looked into this topic a couple of years ago as we were preparing for my father to be removed from a ventilator and feeding tube.  (Very fortunately for our family, Dad gave us the ultimate gift and died of a heart attack before we removed life support.)

Besides these two group member stories, I know little on this topic so was very interested in today’s article.  You can find the article here:

www.nytimes.com/2009/12/27/health/27sedation.html

Months to Live
Hard Choice for a Comfortable Death: Sedation
New York Times
By Anemona Hartocollis
December 27, 2009

This is a tough subject for many.