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 :
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.
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.]
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.