Will your doctor honor your dying wishes?

Kari Chisholm FacebookTwitterWebsite

Over at FireDogLake, David Dayen takes note of a new directive from the US Conference of Catholic Bishops that forbids Catholic-run hospitals, and the doctors and nurses that work in them, from "removing feeding tubes or ending palliative procedures of any kind, even when the individual has an advance directive to guide their end-of-life care."

Barbara Coombs Lee is an Oregon nurse who was the chief petitioner on Oregon's Death with Dignity ballot measure. She's now the president of national advocacy organization Compassion & Choices. As she told FDL, this would have a substantial effect:

In many cities, this means that every hospital or medical care facility will not allow the withdrawal of a feeding tube. “In Spokane, Washington, if you don’t get Catholic health care, you don’t get health care,” Coombs Lee said. “In Eugene, Oregon, if you don’t get Catholic health care, you don’t get health care.” Coombs Lee characterized it as a kind of entrapment, with a sense of “my house, my rules.” If a patient’s family wanted to comply with an advance directive, they would have to leave the Catholic care facility, adding a level of stress and disruption to the already difficult time of aggrievement. “Decisions on feeding tubes are hard enough without adding this extra adversity,” said Coombs Lee.

As Joan McCarter notes at Daily Kos, this isn't just about Spokane or Eugene. There are 565 hospitals in America run by the Catholic Church - and this applies to anyone, Catholic or otherwise, getting care at one of their facilities. And in many communities, that's the only health care available:

Many cities and rural communities, particularly in the mid-West and mountain West, only have Catholic hospitals and nursing homes. The Bishops' directive isn't just operative for Catholic receiving care, but for anyone admitted to a Catholic facility. To my non-lawyer's eye, that would fall under "religious discrimination." Since the Bishops have decided to take such a direct, political role in this issue, in the DC gay marriage issue, and in healthcare legislation, maybe it's time for Congress and the government to decide whether they should stop providing federal dollars to these institutions.

Frankly, I think it's outrageous that any doctor, nurse, or hospital would force treatment on a person against their will. It's one thing if the patient's wishes are unknown, but entirely another if they've been crystal clear.

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    Full disclosure: I am the Online Community Builder for Compassion & Choices

    Thanks for this post, Kari. This is one of those things that can fly completely under people's radar.

    Not only does this directive have the potential to subvert the end-of-life wishes of hundreds of thousands of patients in hospitals and nursing homes, these directives extend to Catholic-run hospice as well.

    As we hit the holiday season, this can be an opportune time for people to speak with their family members about their end-of-life wishes. Get your advance directive filled out (you can get a copy of your state-approved advance directive free-of-charge here). Talk with your physician about your wishes as well and make sure that they will honor them. And make sure that if you must seek treatment at a health care facility, the hospital will follow YOUR choices.

  • Greg D. (unverified)
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    Interesting topic. In my day job I sometimes speak to non-religious hospitals. Recently a young 19 year old woman was admitted to one of the hospitals I work with. She was diagnosed as suffering from a severe eating disorder. She told the admitting staff that she just wanted to die. The hospital asked me what to do. If I had told them it was "ok", they would have let her die. I told them to file a petition in court seeking guidance. The judge held a hearing and eventually ordered a nasal tube to feed her. She regained weight and last I heard is in some sort of transitional care facility.

    I like to think of myself as a very progressive / socialist guy. Perhaps I should have told the hospital to just let her die?

    I was not thinking of the issue on a political basis.

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    Anyone know if this policy is legal? If the family says they won't pay any longer, who pays? Can the family be forced to pay when they have an advance directive from the patient? Can the legislature pass laws that require the hospitals to honor the wishes of the patient? Lastly, will the Oregonian actually report this story or pretend it doesn't exist?

    Many questions, few answers.

  • mlw (unverified)
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    Greg D. Not the same thing at all. She didn't have a terminal illness and was obviously mentally ill. There's an absolute right to refuse medical treatment in the US if you are sane (well, and arguably if you don't have a term fetus on board). The line gets a little fuzzy when you've received medical treatment and have expressed your desire not to have it in some advance directive, but are not competent (or conscious) at the time.

    I sympathize somewhat, given that Catholics find it morally abhorrent to take an affirmative action to end a life. However, I think there's a pretty good argument that they legally couldn't stop someone else from removing life support, when that action has been validly authorized by the patient before the patient became unconscious.

    It should be noted that Catholic hospitals are obligated to respect DNRs, since that is a patient's expression of a desire not to receive affirmative treatment.

  • Greg D. (unverified)
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    MLW

    Not sure why you assume the young woman was mentally ill. I think the point of the original post is that everybody is entitled to choose when to die, and I think I agree with that. Not sure if it matters whether you pull a plastic gun out of your coat in front of 12 cops, or put a rope around your neck and jump off the balcony of your apartment or check into a hospital with the announced intention of dying.

    One one hand, everybody should be able to choose when to meet the grim reaper.

    On the other hand, there are other people and businesses (including hospitals) who need to tread very carefully on this topic.

    Or so they tell me.

  • mlw (unverified)
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    As a matter of morality, I don't necessarily disagree that every sane person can end their own life. However, as a practical matter, that's not the law. Suicide is only legal when the person meets the requirements of Death with Dignity. I assumed that she was not sane because having a "severe eating disorder" would mean that she was not sane as a legal matter.

    The legal distinction for hospitals is pretty simple. They (probably) can refuse to withdraw life support from an unconscious person, but they cannot force life support on a competent person who declines it.

  • Zarathustra (unverified)
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    QED, they don't work in the public interest, they work in their own interest. End their and all religious tax exempt status!

    Greg, I think the issue in your situation was mental capacity to make the decision. Good point, though; you capture the Catholic mentality. To them, we are all similarly impaired to make the right choice.

    It is worth noting that the directive from the Council is a radical break with Catholic tradition in the US. For hundreds of years, it was accepted here that the physicians oath trumps Church, that that is a private matter. Best care comes first. Second, John Paul II and Reagan were an unholy alliance, and largely changed the culture of Catholicism in the Americas. His rabid anti-communism, and concern about Liberation Theology in the Americas, dovetailed nicely with Reagan's "Evil Empire" thinking, and social issues with the Council saying things like "just possessing nuclear arms is immoral".

    Between them, that culture was gutted and key personnel replaced. Today, you don't hear such airy fairy ideas out of the Council, in fact they are down right conservative. Now, you have the specter of communion being a political act. This is radical new ground.

    In their contemporary role as prime apologist for human domestication, it is the most unforgivable of actions, for the livestock to decide when/if they live. The farmer controls the herd size. Period.

  • LB (unverified)
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    Thanks for posting this. My father died from Cruetzfeldt-Jakob Disease (Human Mad Cow) last Summer in Oregon. He died surrounded by family. He fortunately had his wishes carried out - no force feeding, etc. He had absolutely no chance of having a recovery as the disease was eating him - converting his body to itself.

    "Frankly, I think it's outrageous that any doctor, nurse, or hospital would force treatment on a person against their will."

    I concur.

    P.S. I am a left libertarian and not the typical audience of this blog.

  • Lord Beaverbrook (unverified)
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    Again, thanks for an issue which too often goes under the radar!

    This is why I say that one must refuse treatment, on the scene. Once in their custody you are compromised. Not easy to convince emergency personnel, but having a medical ID bracelet that says, "Refuses All Financial Responsibility" does wonders!

  • rw (unverified)
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    Greg D, why do you always pick a g.d. fight? MLW was perfectly respectful in corresponding with you! I don't understand you.

    Typically, a person with an "EATING DISORDER" is considered to be struggling with mental illness to one degree or another! If they are subject to hospitalization due to the disorder, this is not a standard broken bone, dear.

    It's a supposiiton that MLW is lining out along with all the others that have thus far been introduced as we all discuss together the many aspects of the topic.

    Are you capable of that? If not, could you please take a little naptime and just listen quietly? Folks here are having a friendly and informative discussion as to some of the ins and outs of the topic.

    Egad.

  • rw (unverified)
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    I am reminded of the early years of asylums, the famous tourist trap known as Bedlam.

    Ok, so I reacted. Sorry. But I'm still mystified as to your tone of... "why in the WORLD would you even MENTION... "... to mlw. Zara speaks of it in terms of the religious institutions' frame of reference, I'm thinking of it from a strictly mental and behavioural health clinic perspective.

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    John Calhoun:

    You're asking some excellent questions here.

    Compassion & Choices is currently studying the issue of payment and legality. Advance directives are not legally binding--they are a guideline which expresses the wishes of the patient. Care in hospitals is generally driven by the physician, rather than the patient and their family. We believe that patient-centered care is where medicine must eventually go.

    C&C will be suggesting actions in the coming months for citizens who have concern about these policies. There are a number of ways that you can stay current on this. Go to our website and sign up to receive our action alerts. Join us on Facebook and Twitter to get daily and weekly updates.

    Carla Axtman Online Community Builder Compassion & Choices

  • Kurt Chapman (unverified)
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    My first and admittedly cynical response was that the Catholics needed to raise money to pay off all the molester lawsuits anyway that they can.

    In reality, catholic run hospitals are staffed with lay-professionals and administrators. They have to watch our for the wishes and cares of the patient and their family or risk the ire and scrutiny of the legal system. If they do not, they could lose acceditation under JCAHO.

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    So Carla I signed up on FaceBook.

    The more I think about it the more questions I have. I presume that the hospitals are separate legal entities that have a Catholic connection, but I doubt there is a deed owned by the Church. So what is the connection and control? Can the local board make a different decision than the Bishop? If a doctor refuses the direction of the patient and the family is he liable for a lawsuit, is the hospital for padding a bill? Is this directive only moral guidance or is it administrative requirement? What do the insurance companies think about being required to pay for hospital care that is not required? Is this story just an overblown case of sensational journalism or is it real?

    Seems like a whole lot more investigative reporting is necessary.

  • Greg D. (unverified)
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    Wow RW, did not mean to tick you or anybody else off.

    My point which I obviously failed to communicate, is that medical facilities have a lot of things to consider when deciding whether to honor a patient's wishes regarding care. Some cases are clear, such as my late father's instructions that he did not wish to prolong his life after battling ugly cancer for a while. Other instructions - such as the 19 year old woman I referenced - create a lot of tricky ethical questions. As an attorney who provides ethical advice to medical facilities and professionals, I see this stuff frequently and I am stressed when articles like this are published which suggest that one type of facility (Providence I assume) is any different than the rest of the local facilities. This is complicated life and/or death stuff, and in my opinion not well suited for "sound bite" political discussions.

    Happy Thanksgiving to my fellow turkeys.

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    Carla,

    I agree with the sentiment about knowing family members end of life decisions. A little over six years ago, my father ended up in the hospital. He had a bad stroke at the age of 42 and had several smaller strokes throughout the next 13 years leading up to May of 2003. My dad lived on his own and clearly didn't take good care of himself despite his children's proding.

    I had been visiting my mother in Southern Oregon when I recieved a call from a hospital that my father had been admitted. He had yet another stroke and despite only being 55 at the time, he looked much older. My father and I never had a conversation about end of life decisions and I would have probably never known how to start such a conversation with him.

    The doctors did everything they could, but said that he would not survive without life support. After more then two and half weeks in the hospital he was transfered to hospice and removed from life support. It was a decision I had to make as the eldest of his three children with the help of my mother and aunt (my dad's sister).

    That was a wake up call because after that I told my mom that she needed to be very clear what her wishes were and get her affairs in order in case something happened. It is a very difficult place to be as a family member when someone leaves you no clue what their wishes are. Even if the conversation is difficult, sit down and make sure to have it.

  • mlw (unverified)
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    Not to shine a little light on what is a gloomy subject, but Oregon has the best palliative care system in the country. Because of the existence of Death with Dignity, physicians are more willing to prescribe appropriate doses of pain medications at the end of life. (No, there's nothing in DwD about pain meds - it's purely a comfort thing. Docs were worried about prescribing "terminal sedation", and now they're less worried.) The problem people run into is that they do not wish heroic measures and wish to die at home, but, when they are found unconscious, well meaning people call the ambulance. Once you enter the emergency medical system consent to treatment is more or less presumed, and people end up receiving very expensive care that they don't want. The solution is to have very clear documents about your wishes, a health care proxy, and to have palliative care set up in advance if you're approaching the end of life. While Medicare will apparently not cover the conversation with the doc about end of life preferences, it does generally cover palliative care, and palliative care physicians do not decline to have the conversation merely because of coverage issues. (There are other billing codes to hide the conversation behind anyway-a minor dishonesty in a fundamentally dishonest billing system.)

  • Kurt Chapman (unverified)
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    My mom had a massive heart attack early June 2008. She was without oxygen for about 20 minutes before the Paramedics were able to arrive and "revive" her. She was transported to a hospital on life support and remained that way for 1 1/2 days before a second EEG was performed confirming that she would not survive without machines.

    The end of life discussion was held in a compassionate, professional manner by a physician who was giving us the facts of her condition. We knew my moms wishes and my sister and I helped my dad make the decision to remove the macines. Mom "died" about 7 minutes later. But she really died as she hit the ground from the heart attack.

    <h2>These decisions are difficult and need thoughtful response. Any hospital or medical system refusing to deal openly with patients and/or their families runs a huge liability risk.</h2>

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