Tuesday, 9 April 2013

Liverpool Care Pathway - "Changing The Cultural Conversation"

At Disability and Representation - Changing the Cultural Conversation, Rachel Cohen-Rottenberg proposes a question and then poses an answer:

How can a life not be worth saving? Apparently, when it's a disabled life.
"On what possible basis would a doctor discourage a patient from having a life-saving procedure when the patient clearly wants it — and when several other doctors had already suggested it? It makes no rational sense at all. The only way it could possibly make sense is if one started from the premise that Amanda’s life was not worth saving in the first place."

Amanda Baggs, the Pressure To Die, and the Case Against Assisted Suicide
April 6th, 2013 by Rachel Cohen-Rottenberg

There has been a great deal made lately of the so-called right to die - the right of terminally ill patients to obtain a lethal dose of medication in order to end their lives. Advocates for “death with dignity” believe that they can put enough safeguards in place to ensure that people are able to make a free and autonomous decision, protected from outside pressure at the hands of parties who do not have their best interests at heart.
What became really disturbing was the gastro- enterologist's attitude towards my treatment. He kept trying to find ways to persuade me that I didn't want a feeding tube. He said I had to consider alternative options [even when] the current [alternative] option was death from pneumonia.
Under our current system, the very notion of this kind of autonomy is a dangerous myth. There can be no free and autonomous decision to die with dignity when people who want to live with dignity are not encouraged to live — when the very idea that they can live with dignity is not even on the radar of the doctor who walks into the room.
Let’s face it: disabled people represent the failure of the medical profession to live up to the mythology our culture has built around it — that cures are right around the corner, that medical science is all powerful, that life can be made perfect and pain free, and that even death can be put off indefinitely. People with disabilities are an affront to a culture that idolizes the medical profession and assigns it all kinds of power it does not have. The myths by which we live fail abruptly in the presence of a person with disabilities, and doctors are no more immune from the power of those myths than anyone else.
What happens to people who don’t have the support that Amanda has? What happens to people who are sick, and in pain, and alone, and don’t have a fierce advocate? What happens to people who aren’t well known in the disability community? What happens to people who do not realize that they have worth, who do not realize that they have the right the right to live? What happens to people lying in hospital beds, uncared for, feeling that their lives means nothing because of all of the genteel and not-so-genteel ways in which that idea is communicated? How many people feel that they are simply a waste of space because they’re being pressured to choose the alternative of death?
In this kind of environment, no free choice is possible. And I think that the proponents of assisted suicide know that. I really do. In fact, I think that the very reason that people put assisted suicide on the table at all is that they know the kind of treatment in store for them if they become ill or disabled. It’s not really illness or disability they fear, because it’s entirely possible to live a very good life with illness and disability in it. What people fear most is being treated as though they have no dignity, as though they have no worth, as though their lives matter not at all. This is the deepest fear: to not matter. Even pain and death pale in the face of it.
...how easily vulnerable people are pressured to die by those who feel their lives are not worth living
I think that many people feel that they would rather die than to be treated as though they are worthless. And so they put forward legislation that will give them a way out. But they don’t realize that we can fight the idea that it’s better to be dead than ill or disabled — that we can react to it with outrage, and that we can create communities of support so that none of us ends up with our worst fears realized.
We have to. We can’t give up. We can’t give in to the idea that death is better than life. Because what is happening to Amanda Baggs should scare the hell out of all of us, and we need to take that fear and listen to what it’s telling us.
The reaction to fear can’t be surrender. Not when life is at stake.
How can a life not be worth saving? Apparently, when it’s a life not worthy of life...

I've had a  number of close calls; I'm not interested in getting any closer. - Amanda Baggs
How near the brink to that darkness we are! How much closer will we step before we plunge again into that abyss...?

How easily vulnerable people are pressured to die by those who feel their lives are not worth living...

Do you think your life is worth saving? Boy, you won't think so after watching these videos.

Here is Scienceline -

Visualizing the very end

A group of doctors advocates use of videos in advance care planning

Advanced cancer patients who watched this video in their oncologists’ office were over 50 percent more likely to say they did not want CPR attempted on them, compared to a group of similar patients who heard only a verbal version of the same information. The study, published in January in the Journal of Clinical Oncology, is the latest in a string of trials led by Angelo Volandes examining how informational videos influence patients’ preferences about treatment at the end of life.

A quarter of Medicare’s ever-increasing costs are from treatment in the last year of life, excluding prescription drugs and nursing home care. Volandes, an internist at Massachusetts General Hospital, doesn’t talk much about money, though. He says he wants to empower patients to make informed decisions.

For the better part of the last decade, Volandes, who studied filmmaking during medical school, has been producing short videos to inform decision making about end-of-life care. With funding from the federal government and the Foundation for Informed Medical Decision Making, Volandes and other doctors have tested the videos in controlled studies, and they have been integrated into standard practice at 35 large health care organizations in the U.S.

The results of the studies are remarkably consistent. In each of nearly a dozen papers trying different videos in different populations, including individuals not currently facing illness, the videos turned people off of life-prolonging treatment. In fact, in four of the studies, not a single person said they wanted life-prolonging care after watching the video. Some of the videos include clips of CPR and ventilation contrasted with clips of a person receiving hospice care. Another features a condition rather than a treatment – it shows a woman with advanced dementia who cannot walk, communicate or feed herself.

This is Ms. Amanda Baggs -

In My Language

In My Language

Uploaded on 14 Jan 2007
The first part is in my "native language," and then the second part provides a translation, or at least an explanation. This is not a look-at-the-autie gawking freakshow as much as it is a statement about what gets considered thought, intelligence, personhood, language, and communication, and what does not.

No comments:

Post a Comment