By John Ballard
His grave is unmarked,
But it does not matter.
He had always lived in the borderland, anyway.
Somewhere between this world and the other.
It was a good death.One Stab, Legends of the Fall
Most of us are uncomfortable with the subject of dying. And the lacerating rhetoric about death panels and the careless, stupid neologism "Obama-care" has only added to widespread denial regarding the one reality that everyone faces, the deaths of ourselves and those we love. Father's Day is yet another chance to gently but firmly remind those otherwise in denial that everyone has an appointment, like it or not, with the Angel of Death.
Today's recommended reading is What Broke My Father's Heart by Katy Butler, a five thousand word essay in this weekend's New York Times Magazine describing how she and her mother dealt with the death of the most important man in their life, an event which would have been better for all concerned years before.
Born in South Africa, he lost his left arm in World War II, but built floor-to-ceiling bookcases for our living room; earned a Ph.D. from Oxford; coached rugby; and with my two brothers as crew, sailed his beloved Rhodes 19 on Long Island Sound. When I was a child, he woke me, chortling, with his gloss on a verse from �The Rubaiyat of Omar Khayyam�: �Awake, my little one! Before life�s liquor in its cup be dry!� At bedtime he tucked me in, quoting �Hamlet� : �May flights of angels sing thee to thy rest!�
Now I would look at him and think of Anton Chekhov, who died of tuberculosis in 1904. �Whenever there is someone in a family who has long been ill, and hopelessly ill,� he wrote, �there come painful moments when all timidly, secretly, at the bottom of their hearts long for his death.� A century later, my mother and I had come to long for the machine in my father�s chest to fail.�...on Nov. 13, 2001, when my father � then 79, pacemakerless and seemingly healthy � collapsed on my parents� kitchen floor in Middletown, making burbling sounds. He had suffered a stroke.
He came home six weeks later permanently incapable of completing a sentence. But as I�ve said, he didn�t give up easily, and he doggedly learned again how to fasten his belt; to peck out sentences on his computer; to walk alone, one foot dragging, to the university pool for water aerobics. He never again put on a shirt without help or looked at the book he had been writing. One day he haltingly told my mother, �I don�t know who I am anymore.�
His stroke devastated two lives. The day before, my mother was an upper-middle-class housewife who practiced calligraphy in her spare time. Afterward, she was one of tens of millions of people in America, most of them women, who help care for an older family member.
He died seven years later, the final years of his life overshadowing his life's accomplishments with memories of protracted suffering which, thanks to modern science and medical care, would not likely have happened even fifty years ago.
The narrative focuses on the unintended consequences of a pacemaker.
On the Internet, I discovered that the pacemaker � somewhat like the ventilator, defibrillator and feeding tube � was first an exotic, stopgap device, used to carry a handful of patients through a brief medical crisis. Then it morphed into a battery-powered, implantable and routine treatment. When Medicare approved the pacemaker for reimbursement in 1966, the market exploded. Today pacemakers are implanted annually in more than 400,000 Americans, about 80 percent of whom are over 65. According to calculations by the Dartmouth Atlas research group using Medicare data, nearly a fifth of new recipients who receive pacemakers annually � 76,000 � are over 80. The typical patient with a cardiac device today is an elderly person suffering from at least one other severe chronic illness.
Over the years, as technology has improved, the battery life of these devices lengthened. The list of heart conditions for which they are recommended has grown. In 1984, the treatment guidelines from the American College of Cardiology declared that pacemakers were strongly recommended as �indicated� or mildly approved as �reasonable� for 56 heart conditions and �not indicated� for 31 more. By 2008, the list for which they were strongly or mildly recommended expanded to 88, with most of the increase in the lukewarm �reasonable� category.
That's enough to inform the few readers who go to the link. A thoughtful comments thread is overwhelmingly supportive and sympathetic to the writer, but there can be found the sincere criticisms of a handful of critics as well.
When I first saw this piece my first instinct was to scan it and move on. This subject is old news in my life, already mentioned frequently in past blog posts. But I was surprised to come across these paragraphs.
...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.
(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.)
Among the comments I found these links supporting this recent development.
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.http://www.ama-assn.org/amednews/2010/05/31/prsa0531.htm
Implantable cardioverter-defibrillators, or ICDs, can impose a particularly heavy burden on terminally ill patients, continuing to send electrical shocks as the patient dies.
On May 14, 2010, the Heart Rhythm Society (HRS) has released the first consensus statement for the management of cardiovascular implantable electronic devices in patients nearing end of life or requesting device deactivation. The HRS Expert Consensus Statement on the Management of Cardiovascular Implantable Electronic Devices (CIEDs) in patients nearing end of life or requesting withdrawal of therapy was written in collaboration with representatives from the American College of Cardiology (ACC), the American Geriatrics Society (AGS), the American Academy of Hospice and Palliative Medicine (AAHPM), the American Heart Association (AHA) and the European Heart Rhythm Association (EHRA). The Society's expert consensus statement was presented at Heart Rhythm 2010, the Society�s 31st Annual Scientific Sessions � download statement now (PDF, 196K).http://www.hrsonline.org/policy/clinicalguidelines/ceids_mgmt.cfm
The consensus statement outlines common ethical and legal concerns related to withdrawing CIED therapies (device deactivation), a decision-making algorithm for withdrawing CIED therapies, how CIED-related ethical conflicts can be prevented, and the rights and responsibilities of the clinician whose personal beliefs preclude his/her participation in device deactivation.
More at the links.
I will spare the reader further comments by me. I doubt anything I add will change minds already decided but this new information should be better known.
Thank you. I knew nothing about this and most likely would not have seen the article. I am talking to my lawyer about re-writes tomorrow
ReplyDeleteimagine getting a TASER implanted. for life. with its own microprocessor. deciding to zap you.
ReplyDelete"imagine getting a TASER implanted. for life. with its own microprocessor. deciding to zap you."
ReplyDeleteFor those not in the know, the device in question is called an Implanted Defibrillator.
Had a patient once who had one of these who kept going into sustained Stable Ventricular Tacycardia (V Tach). His implant kept firing shocks, which was excruciatingly painful to him, but the V Tach did not resolve. I can still recall his painful cries when the defibrillator fired. I'd give him boluses of Lidocaine, which would help for the short term, but he ended up being admitted to ICU for several days.