Who decides when you die?
Remember when Teddy chose Brian to decide when to remove life support (but didn’t bother to tell Brian)? Do you have a living will or an advanced directive? You should!
I’ve spent way more time researching this issue than I ever expected to and only scratched the surface, but it seems so important for us to be thoughtful about. Here are a few of the issues that are related to Ms. Habtegiris’ case, along with links to some of the articles I found.
I certainly have no answers to the questions raised; I have some opinions, but for the most part it’s very murky to me. One thing is clear: we all need to have an advanced directive stating our desires; this statement must be witnessed (see your own state’s rules and regs about the form of the statement) and copies must be readily available just in case we ever need to make our end-of-life wishes clear. We should also choose someone to make our decisions for us in the event we can’t make them for ourselves. But let’s not do like Ted did, OK? Let’s tell the person beforehand!
Here are some issues and links, for those who are interested:
1) Did you know that the state (read “THE STATE”) has an interest in life, particularly in prolonging life? Legally, I mean. That’s in part why you get conflicts like the Karen Ann Quinlan case, or the more recent Nancy Cruzan case in Missouri (read the well-reasoned and surprisingly easy to follow Missouri State Supreme Court decision here). Lots of other decisions take this into account, including Roe v. Wade.
2) I came across the heartbreaking case of the Werneckes, where “Edward and Michele Wernecke rejected standard medical treatment for their cancer-stricken daughter, the state took twelve-year-old Katie out of their custody-and set off a nationwide debate over the meaning of parents’ rights” (from an article in Texas Monthly. Who gets to decide what care is appropriate for you? For your children? And of course, this case brings in all the child-welfare issues….
3) Tirhas Habtegiris’ plight is not an isolated incident. The following is from an article in Ragged Edge Magazine:
Public attention focuses on the hot-button issue of "physician assisted suicide" -- framed as a personal choice made by a dying person. But away from this media spotlight on the "right to die," people are almost routinely being removed from ventilators -- without their consent in a number of cases. These cases often get no attention. "Treatment decisions" to issue "do not treat" or "do not resuscitate" orders are being made by medical professionals whose views of whether someone has a decent "quality of life" or not can differ radically, studies show, from that of the person they're "treating."
A few weeks ago, many blogs were alight with the story of Tirhas Habtegiris-- an African immigrant with "terminal cancer" -- who was taken off her ventilator at Baylor Regional Medical Center in Plano, Texas, because she reportedly could not pay for her care. Many people commenting on that story were unaware that there were such things as futility policies in place not just in Texas hospitals but throughout the U.S.
Futility policies are a real and present threat to people with disabilities today -- offering concrete proof, it seems, that activists' worries are real: that life with serious disabilities and costly care is indeed considered an economic burden -- and the solution, from the healthcare system's standpoint, is death. Which is called "withdrawal of treatment" or "withholding treatment."
Conflicts between the values of physicians and the healthcare system and disabled people are already leading to decisions to withdraw treatment, or to withhold it -- even if the person wants treatment "and the physician knows this," says University of Akron psychology professor James Werth, who has published a number of articles on end-of-life issues.
To Werth, it's inconsistent -- "artificial," he calls it -- to protest the dangers of legalizing assisted suicide "and not raise red flags about actual incidents involving withholding and withdrawing treatment." Yet that's what happens, he says, "when assisted suicide is singled out as a potential danger for persons with disabilities."
The decision that treatment is "futile" is "inherently value-laden -- they are not objective medical decisions," Werth writes. A number of the studies he reports on show the "patient" and the "health care team" "in opposition -- especially if the emphasis is on perceived quality of life."
Werth cites another study: "of the eight times in which 'patients or their surrogates insisted that all treatment be continued and would not consider limiting therapy,' six had been born outside the U.S." and the 7th was African-American.
In 1995, researchers who surveyed nearly 900 physicians practicing in adult intensive care units reported that "among the physicians who withheld life-sustaining treatment on the basis of futility, 25 percent did so without the written or oral consent of the patients or their families." The study, which Werth cites, is reported in the American Journal of Respiratory and Critical Care Medicine (Vol. 151, pp 288-292).
OK. Enough for now. But my thanks go to Ms. Habtegiris for giving me so much to think about. I pray for blessings and comfort for her and her family.
I’ve spent way more time researching this issue than I ever expected to and only scratched the surface, but it seems so important for us to be thoughtful about. Here are a few of the issues that are related to Ms. Habtegiris’ case, along with links to some of the articles I found.
I certainly have no answers to the questions raised; I have some opinions, but for the most part it’s very murky to me. One thing is clear: we all need to have an advanced directive stating our desires; this statement must be witnessed (see your own state’s rules and regs about the form of the statement) and copies must be readily available just in case we ever need to make our end-of-life wishes clear. We should also choose someone to make our decisions for us in the event we can’t make them for ourselves. But let’s not do like Ted did, OK? Let’s tell the person beforehand!
Here are some issues and links, for those who are interested:
1) Did you know that the state (read “THE STATE”) has an interest in life, particularly in prolonging life? Legally, I mean. That’s in part why you get conflicts like the Karen Ann Quinlan case, or the more recent Nancy Cruzan case in Missouri (read the well-reasoned and surprisingly easy to follow Missouri State Supreme Court decision here). Lots of other decisions take this into account, including Roe v. Wade.
2) I came across the heartbreaking case of the Werneckes, where “Edward and Michele Wernecke rejected standard medical treatment for their cancer-stricken daughter, the state took twelve-year-old Katie out of their custody-and set off a nationwide debate over the meaning of parents’ rights” (from an article in Texas Monthly. Who gets to decide what care is appropriate for you? For your children? And of course, this case brings in all the child-welfare issues….
3) Tirhas Habtegiris’ plight is not an isolated incident. The following is from an article in Ragged Edge Magazine:
Public attention focuses on the hot-button issue of "physician assisted suicide" -- framed as a personal choice made by a dying person. But away from this media spotlight on the "right to die," people are almost routinely being removed from ventilators -- without their consent in a number of cases. These cases often get no attention. "Treatment decisions" to issue "do not treat" or "do not resuscitate" orders are being made by medical professionals whose views of whether someone has a decent "quality of life" or not can differ radically, studies show, from that of the person they're "treating."
A few weeks ago, many blogs were alight with the story of Tirhas Habtegiris-- an African immigrant with "terminal cancer" -- who was taken off her ventilator at Baylor Regional Medical Center in Plano, Texas, because she reportedly could not pay for her care. Many people commenting on that story were unaware that there were such things as futility policies in place not just in Texas hospitals but throughout the U.S.
Futility policies are a real and present threat to people with disabilities today -- offering concrete proof, it seems, that activists' worries are real: that life with serious disabilities and costly care is indeed considered an economic burden -- and the solution, from the healthcare system's standpoint, is death. Which is called "withdrawal of treatment" or "withholding treatment."
Conflicts between the values of physicians and the healthcare system and disabled people are already leading to decisions to withdraw treatment, or to withhold it -- even if the person wants treatment "and the physician knows this," says University of Akron psychology professor James Werth, who has published a number of articles on end-of-life issues.
To Werth, it's inconsistent -- "artificial," he calls it -- to protest the dangers of legalizing assisted suicide "and not raise red flags about actual incidents involving withholding and withdrawing treatment." Yet that's what happens, he says, "when assisted suicide is singled out as a potential danger for persons with disabilities."
The decision that treatment is "futile" is "inherently value-laden -- they are not objective medical decisions," Werth writes. A number of the studies he reports on show the "patient" and the "health care team" "in opposition -- especially if the emphasis is on perceived quality of life."
Werth cites another study: "of the eight times in which 'patients or their surrogates insisted that all treatment be continued and would not consider limiting therapy,' six had been born outside the U.S." and the 7th was African-American.
In 1995, researchers who surveyed nearly 900 physicians practicing in adult intensive care units reported that "among the physicians who withheld life-sustaining treatment on the basis of futility, 25 percent did so without the written or oral consent of the patients or their families." The study, which Werth cites, is reported in the American Journal of Respiratory and Critical Care Medicine (Vol. 151, pp 288-292).
OK. Enough for now. But my thanks go to Ms. Habtegiris for giving me so much to think about. I pray for blessings and comfort for her and her family.