Today, the New York Times published a long story on hospice and palliative care, and how doctors struggle with balancing the transition from active treatment to palliative care in the final stages of terminal illnesses. Some of it is worked within the context of the current “debate” around advance directives in the health care reform debate.
Here’s an excerpt from “At the End, Offering Not a Cure, But Comfort“:
Most doctors do not excel at delivering bad news, decades of studies show, if only because it goes against their training to save lives, not end them. But Dr. O’Mahony, who works at Montefiore Medical Center in the Bronx, belongs to a class of doctors, known as palliative care specialists, who have made death their life’s work. They study how to deliver bad news, and they do it again and again. They know secrets like who, as a rule, takes it better. They know who is more likely to suffer silently, and when is the best time to suggest a do-not-resuscitate order.
Palliative care has become a recognized subspecialty, with fellowships, hospital departments and medical school courses aimed at managing patients’ last months. It has also become a focus of attacks on plans to overhaul the nation’s medical system, with false but persistent rumors that the government will set up “death panels” to decide who deserves treatment. Many physicians dismiss these complaints as an absurd caricature of what palliative medicine is all about.
Still, as an aging population wrangles with how to gracefully face the certainty of death, the moral and economic questions presented by palliative care are unavoidable: How much do we want, and need, to know about the inevitable? Is the withholding of heroic treatment a blessing, a rationing of medical care or a step toward euthanasia?
Facing the end stages of a terminal illness is the focus of this very long article. And it comes as something of a non sequitur when NDY president Diane Coleman is quoted toward the end of the article:
In the political wars over end-of-life care, advocacy groups for the disabled are often as adamant as religious groups in challenging measures that could be seen as hastening death. “Health care providers encounter people at a time of crisis; they see the worst happening,” said Diane Coleman, the founder of an advocacy group for the disabled, Not Dead Yet. “They don’t see them get through it and say, ‘Even with my functional losses, I’m still having a good time.’ ”
In the wrenching context of imminently dying, Coleman’s statements come across as irrelevant at best.
So what happened?
Diane Coleman was interviewed by this reporter for 45 minutes. And the context of that longer conversation covered much broader ground. For example, they discussed “futility” policies. They also discussed how advance directives can apply when someone is critically injured – and whether they live or die depends on the choices made and the treatments given or withheld. They discussed Peter Singer’s essay on “rationing” – in which he suggested that people with significant disabilities could be legitimately be denied health care based on their disability status – an essay which was published in the NY Times Magazine. (Singer and his essay aren’t mentioned in the article)
The end result of using this particular quote – accurate in the context of the conversation with the reporter – is that Coleman and NDY come off as being confused and off-the-mark.
That’s a risk whenever you do an interview that will be edited – for print or broadcast media.
It would be interesting to know if the decontextualized quoting was the work of the reporter – or if it was her editor’s pen at work.
After all, even if they didn’t mention Singer’s essay on rationing, they’re well aware of NDY’s role in enlisting disability advocates to denounce the piece – and the editorial choices that led to its publication. –Stephen Drake
I went to the NYTimes article just to see who the writer is. What’s her track record on issues that relate to us?
Good question, Stephen: editor or
writer who made cuts and thereby
distorted and put Diane Coleman’s comments without proper context. It
suggests the writer and/or editor have a “point of view”. And that point of view either makes disability rights/human rights activists stereotyped and/or irrelevant. Conclusion: they don’t know us, know about us and are having “blocks” to learning our point(s) of view. Very similar to the history of other
minority groups in the media: African-American, Latino, women,
gay…and us, people with disabilities, who happen to be in all groups listed and not listed above.
One thought struck me hard (again – more in a sec): one has to fit into the medical model as the medical profession wants one to fit. In this case, “end of life” “palliative” care. But life and people frequently elude the “tight” categories the medical profession, based on their incomplete knowledge and biases.
In this case, it’s who they see as fitting into this kind of program.
I think it was Cervantes, himself disabled in war, who wrote there are 10,000 doors into death.
Several days ago, I wrote about
a sibling’s best friend of 40 years, who was in a hospital, in intensive care, with pneumonia from toxic black mold, after sudden
collapse. (Had been coughing for
6 months.) Took several days to
diagnose (altho my sibling immediately guessed cause, but drs.ignored comment), then treatment. Speculation about “permanent damage” (90% loss of lung function)- total unfamiliarity with people living with breathing assists. Then he died. I asked myself, all through
the 2plus weeks I’d known about this health crisis (via my sibling), what if it had been me, a person with severe disabilities?
How would the medical professionals have handled me, and family? My family is far away and
not so great on disability awareness, despite my decades of effort, chuckle. (Well, they’re better than before.)
We need some op ed pieces in the NYTimes, as well as Letters to the Editor. (I had a letter published in Aug.1986, I think, protesting the use of “confined to wheelchair” in an article about Andre Dubus.)
Interesting how being considered as outspoken “as a religious group” is automatically assumed to be a bad thing…
The issue of organ donation is at the doorstep of these end of life discussions. Death should not be hastened. I fear that those at the end of life will come to be viewed as organ donors, rather than as ill patients. If this concept becomes incorporated into medical culture, it will change doctors, nurses and society. Imagine the pressures that families of these ill folks will face. It will start a mission creep that will take us far away from our ethical moorings. http://www.MDWhistleblower.blogspot.com
It continues, and heaping more…
Today’s DemocracyNow featured the
writer of the Sun. NYTimes article
on “euthanasia” at Memorial Hospital
in New Orleans during the flooding
aftermath of Katrina, 4 years ago.
(I do not read the NYTimes).
The author’s conclusion, without
challenge by Amy Goodman, host of
and interviewer, DemocracyNow, was
biased against the disabled, the ill, the elderly – and taking the side of the doctors who killed people. In the name of “triage”,
as the author saw it.
“Every person will have to make up their own mind” on it. Nay.
I already mailed a protest (US mail) to a DemocracyNow (show) producer. I shall continue to protest. What I said, in addition to above, was: how can you have a segment on “euthanasia” without
NOT DEAD YET represented – Ms. Diane Coleman or Stephen Drake?
I shall continue to protest.
How do I get people who are not disabled, to understand
BEFORE they become disabled?