Monday, December 15, 2008

GETTING READY FOR THE END

NY Times - Compassion & Choices is a non-profit organization best known for its efforts to legalize physician assistance for the dying, now the law of the land in the states of Oregon and Washington (and, apparently, Montana, too). But the group's less visible mission is offering free consultations to individuals and families looking for information about end-of-life options, including hastening death by both legal and illegal means. . .

While Compassion & Choices claims 50,000 members nationwide, "the people who find us are a very small group," Ms. Schwarz said. And some are not eligible for assistance, since the group's guidelines require a client be both "terminally ill" and "decisionally capable." That means a man newly diagnosed with Parkinson's disease would not be given information about lethal medications, Ms. Schwarz said, but rather assured there will be someone to help him if he reaches the terminal stage of his disease.

I have heard from so many elderly men and women who are not actively dying but desperate for a way out when the time comes, so I asked Ms. Schwarz how she counsels someone who wants to know they will have that control.

"You mean the little old ladies - God love them - who are disappointed I won't come over and give them a magic purple pill?" Ms. Schwarz asked.

Like the newly diagnosed man with Parkinson's - or those with a genetic predisposition for Alzheimer's disease, some early symptoms and a terror they will miss the moment when they still can take their own lives - Ms. Schwarz promises that "we'll absolutely be there for you. And in the meantime, in general terms, we can talk about what you can do to stay in control.". . .

Voluntarily stopping food and hydration can take two to three weeks, depending on someone's underlying disease and overall physical condition, and may produce uncomfortable thirst and, in rare cases, delirium. For people living at home, Ms. Schwartz recommends a round-the-clock aide, even if a family member is present, who understands what is going on rather than hiring someone who might have moral reservations on discovering it. She also suggests lining up a physician, ideally with palliative care skills, willing to provide sedation and, if necessary, make a house call.

Hospitals and nursing homes are more than capable of managing the symptoms of a patient who has chosen to refuse food and water. But many institutions are not comfortable with this decision, which is more ambiguous legally and morally than refusing a feeding tube, since taking sustenance by mouth is considered by some to be natural, while tube-feeding is artificial and thus extraordinary.

In the case of such queasiness, Ms. Schwarz tells family members, "If you want to honor her request and the institution won't support you, bring her home with hospice support.". . .

While a hospice team can almost always control physical suffering, "it isn't always about pain," Ms. Schwarz said. "It's about someone who finds it meaningless to exist at the point when they know they're only circling the drain. Or someone in diapers who cannot bear that his wife of 30 years is changing them. . . These nurses shouldn't act like [hastening death] is a secret they have to keep. Most people just want to be able to decide. If they know they have the means to end their life tomorrow, they'll wait until tomorrow and see if things are better."

1 Comments:

At January 3, 2009 1:58 AM, Blogger Bailey said...

Hello -
I am a documentary maker and hospice volunteer in Atlanta, Georgia.
I've produced a short documentary about end-of- life decision making, palliative care, caregiving and hospice.

It's called 203 Days.
You can view it in its entirety at the following University of Connecticut website along with a study guide.

http://fitsweb.uchc.edu/Days/days.html

It is an unflinching look at the day-to-day interactions between patient and caregiver, in this case an 89 year old woman who is living with her daughter.

203 Days won the First Place 2007 Film Award from the National Hospice and Palliative Care Organization (NHPCO).

If you'd like more information please go to my website

http://bbarash.com/bb_203days.htm

I hope this film is helpful to people who want to know more about some of the most common experiences for caregiver and patient at this difficult time.

Sincerely,
Bailey Barash

 

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