The right to turn off a pacemaker

by CynthiaYockey on June 22, 2010

I was browsing Twitter this morning and spotted a tweet by Jimmy Bise linking a post by Stacy McCain, who was connecting a New York Times piece about anosognosia to choice of political parties. “Anosognosia” describes the dilemma where you don’t know what you don’t know, which is why stupid people are not smart enough to know that they are stupid. Stacy sees this as an explanation for why some people are Democrats.

However, the piece at the New York Times that really got my attention was a headline in the sidebar: “What Broke My Father’s Heart.” It describes one woman’s unsuccessful quest to help her mother navigate the healthcare system to allow her father to have his pacemaker turned off so that he could die comfortably in hospice care.

This gave me quite the shot of adrenalin because my father’s life was saved in December 2008 by a pacemaker/defibrillator. I knew before it was installed that it is possible to turn them off to allow someone to die peacefully. Dad has made it very clear to his geriatrician that he wants hospice care when his time comes but the sentences I boldfaced below have sent me on a mission to review this possibility with him, in case we need to re-write Dad’s durable medical power-of-attorney :

From page 5 of the essay:

Over the next five months, my mother and I learned many things. We were told, by the Hemlock Society’s successor, Compassion and Choices, that as my father’s medical proxy, my mother had the legal right to ask for the withdrawal of any treatment and that the pacemaker was, in theory at least, a form of medical treatment. We learned that although my father’s living will requested no life support if he were comatose or dying, it said nothing about dementia and did not define a pacemaker as life support. We learned that if we called 911, emergency medical technicians would not honor my father’s do-not-resuscitate order unless he wore a state-issued orange hospital bracelet. We also learned that no cardiology association had given its members clear guidance on when, or whether, deactivating pacemakers was ethical.

From page 6 of the essay: (Last month that changed. The Heart Rhythm Society and the American Heart Association issued guidelines declaring that patients or their legal surrogates have the moral and legal right to request the withdrawal of any medical treatment, including an implanted cardiac device. It said that deactivating a pacemaker was neither euthanasia nor assisted suicide, and that a doctor could not be compelled to do so in violation of his moral values. In such cases, it continued, doctors “cannot abandon the patient but should involve a colleague who is willing to carry out the procedure.” This came, of course, too late for us.)

FYI, if you want someone to be able to make medical decisions for you when you can’t make them for yourself, the instrument to create is a durable medical power-of-attorney, NOT a living will. A living will is just evidence of heroic measures you don’t want to have, but it doesn’t allow someone to direct your care according to your values.

The author of the piece, Katy Butler, strikes me as an unresourceful person who was passive about her father’s end-of-life care, no matter how much she says she Googled. She unwittingly describes blunder after blunder that she made, or did not stir herself sufficiently to prevent her mother from making. For one thing, her father had the right to refuse medical care, so she could have fired the cardiologist who refused to turn off the pacemaker and replaced him with the hospice doctor, who really should have been in charge of her father’s care totally once he was admitted to hospice. She also does not say why her father was transported from home hospice care to the hospital when he developed pneumonia and she does not say whether he remained in hospice care in the hospital. If the end is coming and you panic and call 911, then you are back in the acute care system and deserve your wretched fate from completely inappropriate care.

On the other hand, if Butler’s father was receiving hospice care in the hospital — that is, comfort care such as medication for pain and anxiety and oxygen to treat air hunger — then I have no patience with Butler’s self-pity and rage with the system that her father took five days to die. Death is not pretty and it does not care about your busy schedule. Pain is one of the measures Death applies to get you to let go of life and to make your loved ones willing to release you. From the dying loved ones whom I have attended, it looks to me like our souls look back on their current life, and forward to the next life, back and forth, back and forth, as if they are gathering their wits and summoning their courage to make the leap. Pain medications, titrated to the extreme, mind-boggling amounts of pain associated with dying, seem to help this process rather than hastening it. The duty of caregivers at this time is to attend to their dying loved one by providing every comfort in their power, by creating an environment of peace and courage and by letting the dying process take as long as it takes.

I am going to have to be doing this again, soon.

P.S.

If you have a pacemaker, or provide care for a loved one who does, here’s info from the American Medical Association (the article has many useful links):

It is legal and ethical to honor patient requests to deactivate implanted cardiac devices, and physicians should take the initiative in talking with terminally ill patients and their families about turning off the devices, according to a new expert panel consensus statement released in May.

Implantable cardioverter-defibrillators, or ICDs, can impose a particularly heavy burden on terminally ill patients, continuing to send electrical shocks as the patient dies. [Note from CY: These shocks feel like a mule kick to the chest.]

(snip)

Nearly three-fifths of hospices reported patients getting shocked by their ICDs within the past year, said a March 2 Annals of Internal Medicine study. Only 10% of the 414 hospices surveyed had policies on deactivating ICDs, and 58% of the terminally ill patients who received shocks did not have their devices turned off.

The Heart Rhythm Society panel, which included representatives from the American College of Cardiology, the American Geriatrics Society, the American Academy of Hospice and Palliative Medicine, and the American Heart Assn., set out to address the problem by clarifying the legal and ethical status of deactivating cardiac devices. The consensus statement also advises physicians on how to communicate with patients and families about whether to turn off a device.

There are no court cases dealing directly with deactivating heart devices, but the legal and ethical principle that patients and their surrogates have the right to refuse care is solidly grounded, said panel member George J. Annas.

“The closest and most controversial cases are the feeding tube cases. When you take out the feeding tube, you know the patient is going to die,” said Annas, chair of the Dept. of Health Law, Bioethics & Human Rights at Boston University School of Public Health. “Every court has looked at these cases and said, ‘It’s medical technology.’ You can refuse a ventilator, you can refuse a feeding tube, you can refuse anything.”

Patients have the right to refuse care, said Richard A. Zellner, a retired lawyer who served as the panel’s patient representative. He had five implanted heart devices over 14 years before getting a heart transplant in 2006.

“The patient has a right to say, ‘I don’t want any more treatment,’ ” said Zellner, an adjunct lecturer in the Case Western Reserve University Dept. of Bioethics in Ohio. “When the patient says, ‘I’ve had enough,’ that’s enough.”

I promise a post is coming soon with photos of my heirloom tomato plants.

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  • Liz

    I’m a little more sympathetic than you are to Ms. Butler. A lot of people, unless they absolutely have to (as you did, and as you do) simply don’t think about what it really takes to ensure their loved ones have a “good death”. They assume that, since they’re family, and, like, they have the relationship, that, y’see, they can just say what they want, duh. They don’t feel the need to think about it. The reality of death is also something that a lot of people just don’t get, so it can be deeply shocking to see just how slow it can be.

    As far as lack of preparation goes, I’ve seen something similar in straight people who refuse to marry their partner, on the grounds that “you can get the benefits of marriage without actually marrying, you know”. I feel like shaking them.

  • smitty

    Courage, lady.

  • Pain is one of the measures Death applies to get you to let go of life and to make your loved ones willing to release you.

    That’s a profound statement, I never thought of it that way. And if death is made painless and easy, not only is the natural mourning process short-circuited, but patients and their caregivers are less inclined to fight for healing. “Two hundred thousand dollars? From my inheritance? Gosh, maybe it’s time to just let go and flee into that better world over there, Dad.”

    • Teresita,

      I think you do not understand that there is a tipping point where nothing anyone can do will heal you. Some people like to go down fighting — which, I gather, you consider fighting for healing and the right way to do things. Obamacare’s death panels deprive of us of this liberty with the rationale of saving the state money. But, whether you believe it or not, dying people do lose the ability to benefit from medications their bodies no longer can process and they do start refusing food and fluids because their bodies are shutting down. When these things happen, it makes sense to fight the battle you actually are in, rather than the one you wish you were in. Hospice care alleviates pain, fear and other symptoms associated with dying. This actually tends to result in MORE and better time for the dying person. Also, withdrawing medications the dying person’s body no longer can process can make them feel much better and give them more time. Through all the ways that hospice care — also called palliative care — manages the symptoms of the dying process — it gives patients the ability to enjoy the time they have left and to be able to relate to people, which they could not do if they were overwhelmed with pain. Uncontrolled pain makes people die faster and sooner.

      What makes people feel drawn to euthanasia — which is touted as making death painless and easy — are fear of loss of control over their lives, worries about who will care for them when they need assistance with the activities of daily living*, and having no one they love or feel loved by. Quite a large number of the people killed by Dr. Kevorkian were nowhere near death, according to their autopsies — they were goaded to suicide through Kevorkian’s talent for exacerbating their fears and hopelessness.

      Also, nothing short-circuits the mourning process. There is no such thing as closure — that mythical place where the loss stops hurting. Time and life just pull you on so the loss no longer fills your entire horizon. But my policy is not to mourn until after my loved one dies — as much as I can manage, I work to make every day while my loved one is alive happy and joyful and filled with gratitude, praise and reminders of all their accomplishments.

      Cynthia

      *”Activities of daily living” is both a medical and legal term. ADLs include walking, doing laundry, bathing yourself, brushing your teeth, getting on and off the toilet, dressing yourself and so on.

  • Amy

    “Pain is one of the measures Death applies to get you to let go of life and to make your loved ones willing to release you. From the dying loved ones whom I have attended, it looks to me like our souls look back on their current life, and forward to the next life, back and forth, back and forth, as if they are gathering their wits and summoning their courage to make the leap.”

    This is the most beautiful passage you’ve ever written, and one of the most moving that I’ve read anywhere.

    You and yours are in my prayers.

    • Amy,

      Thank you, my dear, we feel blessed by your prayers and those of all my dear gentle readers. I am grateful with all my heart.

      Cynthia

  • Lee

    Cynthia, I am a democrat and I am not ‘stupid’……. got that out of the way…..whew!!!!!!
    But more seriously, your response (6/27/10) to Teresita is so true, to the point, and touching! Thank you for such an enlightening piece. I am a registered nurse working in the hospice field and I couldn’t have said it any better. I have seen what pain can do to the living and the dying, and if we as hospice healthcare workers can do anything to alleviate that pain and torment in their end of life care, then by all means we would have achieved a huge part of our intention.
    As POAs and family members, fighting to the end by giving vitamins and other medications does not translate into giving the best care for the dying. It may in fact do more harm than good there. So, let’s take a step back and see what’s really good for our dying loved one………. taking care of PAIN and managing symptoms.

    • CynthiaYockey

      Lee,

      Thank you!

      It is so hard to believe until you’ve seen it that there is such a thing as a time when the same medicines that have prolonged or improved your life actually may start to make you sick or even hasten your death, but it is true. That’s because the body’s process of dying may be a fairly slow one of gradually shutting down. So hospice is NOT about withdrawing food or vitamins or medicine — it’s about giving the body what it needs and can handle during the dying process and since it is shutting down, it can’t handle food or vitamins or medicine very well. In fact, withdrawing medicines is the treatment for a common problem at the end of life: polypharmia — too many medications. Some people actually improve markedly in hospice care when they have been taken off of the medications that their bodies no longer can process. By meeting your loved one’s actual needs as they change through the dying process, usually what you are giving them is not only the highest possible quality of life, but also longer life.

      Note to my other gentle readers: “POAs” means “powers-of-attorney,” the people with a durable medical power-of-attorney making medical choices for a loved one in accordance with their wishes.

      Cynthia

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