The blessings and curses of families are not limited to holiday gatherings, graduations, weddings and funerals. They also exist at the transition of the matriarch or patriarch from life to death.
Like many elderly Americans, my father wanted to die at home. He was clear on that point. But also like many elderly Americans, he gave mixed signals about what treatment he would accept or decline with that goal in mind.
So when at age 92 my father began his decline from aging with grace to decaying from old age several years ago, my sisters and I began creating a plan that would allow him to reach the end as he wished.
First, we reinforced his household help. Then we scheduled a series of periodic days-long supportive, reconnaissance visits. (None of us live near him.) My father told us that he did not want to be resuscitated if he collapsed. But how should we deal with a nonfatal emergency without losing him to overly aggressive care? Would it be possible, in fact, to do nothing?
[Mission creep doesn’t benefit patients at the end of life]
My siblings deferred to me, the only physician in the group, for medical advice. My oldest sister was the first to visit his apartment in our new rotation. Knowing his desire to die at home, she was anxious about what she should do if something happened, and she peppered me with questions.
“What should I do if he falls and hurts himself?”
“If he is in pain, call 911, then call me.”
“What should I do if he seems to be having a stroke?”
“Call me. And if you can’t get me right away, call 911.”
“What should I do if he gets pneumonia?”
“What if I find him dead in bed?”
“Wait until he is cold and blue, then call 911.”
“Okay. I get it.”
[My husband is dying. Caring for him is an emotional roller coaster.]
After digesting my responses and discussing them with our two other sisters, she typed up a plan that carefully explained our reasoning. She (or whoever was visiting) was to call for help if our father was in pain. Whoever was in attendance was not to take action about other medical problems until I had a chance to weigh in.
Most families are not as united as my sisters and I were around the concept of a painless death at home. If the opportunity for such a death arose, we would seize it. This is what his advance directive stipulated, and it is what he frequently verbalized. “I have lived too long” and “I want to wake up dead” were his mantras. We wanted to honor his wishes.
Participation in the slow decline of an aged parent comes with obligations. There are dues to be paid — for example, showing up regularly for visits, no matter how inconvenient, and taking time to check in with siblings and provide detailed updates. Teamwork, coordination and cooperation help smooth this emotion-wrought journey. When family members do not or cannot work through disagreements, the result can end up punishing the person everyone is trying to comfort and protect.
Unfortunately, my experience as a physician and hospice trustee has shown me, an odd sort of competition can crop up in these situations. Some patterns are predictable. The most common is when siblings compete to prove who cares the most. This is frequently seen upon the arrival of an estranged family member at the deathbed, and it has been described in medical journals as “The Daughter From California Syndrome.” Classically, the syndrome unfolds as the guilt-ridden newcomer urges overly aggressive treatments.
Other patterns are less predictable. In some families, a previously restrained sibling will assert dominance as the designated agent or proxy with power of attorney for health care. That one child has been designated as health-care proxy is not to be envied or taken as a sign that he or she is preferred over another.
[Daughters spend more time caring for aging parents than sons]
Sometimes a financially successful sibling will dominate the decision-making, thinking that the managerial skills that built their business will now translate into medical decision-making ability.
Frequently, religious schisms will arise. I have seen, for example, one sibling’s conservative religious belief that the patient should fight on compete with another one’s new age spirituality urging everyone to “let go.”
The fault lines in decision-making that result from any of these scenarios will prolong some aspect of the dying process, usually to the detriment of patients like my father who have asked for a non-medicalized death at home.
Even though a single person (the competent patient or the health-care proxy for an incompetent one) has the technical responsibility and authority to make difficult medical decisions, the choice to accept or decline a high-risk procedure — such as heart-valve replacement or emergency surgery — is usually the result of a discussion among family members during or after a consultation with the treating physicians.
This is because these discussions most often involve a sick, weak, impaired elderly parent or grandparent and a de facto family committee. It is the rare physician who will exclude family members from a consultation and limit the discussion to the one with power of attorney. It is rarer still for a physician, in the heat of urgent care, to parse the advance directive signed by the patient specifying what they do — and don’t — want if an agitated family member is demanding action.
Doctors are most comfortable proceeding with a high-risk treatment or withdrawing life-sustaining technology such as a mechanical ventilator when the family is unified. On the other hand, if the family is fragmented, doctors are more likely to move the conversation toward, and then proceed with, what they think is “best.” Often this will be an expedient combination of what is medically acceptable, legally conservative and reflective of the doctor’s best interpretation of the family’s majority opinion, even if it defies the patient’s wishes. What the doctor thinks best will also likely be influenced by his or her own end-of-life philosophy.
[What happens when a doctor and patient disagree about care at the end of life]
I have seen many families unable to come to agreement. I have seen many patients overtreated or undertreated in defiance of their wishes. I have seen agonizing scenes of dysfunction, such as a son demanding that cardiac resuscitation be performed on his just-deceased mother. This situation occurred because the mother did not include him in her final conversation with physicians, when she changed her status from “full code” — which had instructed them to intercede if her heart stopped or she stopped breathing — to “do not resuscitate.”
Although my family was in good agreement about my father’s wishes to die at home and to take no measures to prolong his life, our tools were limited. He was not yet a candidate for home hospice — that requires a life expectancy of six months or less — and a new type of very specific advance directive (called a POLST order) was unavailable to him.
In the absence of such orders, I could think of various scenarios that would test our teamwork and resolve.
What if our father developed exceptionally upsetting symptoms such as seizures or massive bleeding from the bowels? What if he became unmanageably delirious? What if the “need” for emergency surgery arose because of a bowel obstruction or a fall with a major fracture?
Would the pain compromise his resolve to use such an acute medical problem as an “exit strategy,” a way to die naturally? Would one of us become guilt-ridden about our “active passivity” regarding medical intervention? At the very end, the inability to “let them go” is a common development.
[Where to find help when you’re grappling with an aging parent’s needs]
Fortunately for my siblings and me, there were no dramatic decisions to make in the two years between our first family consultation and my father’s death at age 94. A year before his death, he had stopped seeing his physicians for checkups. Six months before his death, he enrolled in home hospice, and three months before the end, he stopped taking his non-palliative medications (blood pressure pills, cholesterol lowering pills, water pills, potassium supplements).
“This will be our last visit,” my father said as I kissed him goodbye and left for the airport following a 10-day visit. He was prescient. My oldest sister arrived the next day, and he died two weeks later. I was tempted to return as it was clear the final day was approaching, but there was little point. We had all said our goodbyes. We had all reconciled ourselves. The hospice nurses were visiting him daily, and he was protected, as he wished, from aggressive intervention. The eldest embraced her responsibility to care for him, and the rest of us embraced our obligation not to interfere. We were a team. We were his family.
Harrington, a retired gastroenterologist and former hospital trustee in the Johns Hopkins Medical System, is writing a book about end-of-life decision-making.
Physician Orders for Life-Sustaining Treatment, or POLSTs, are available in about 25 states.
Unlike a traditional advance directive, which expresses wishes in general and requires interpretation by emergency and hospital physicians, POLST orders are developed and signed by the patient’s primary-care physician to expand “Do Not Resuscitate” orders to include options for comfort care only or to set limitations on breathing support, feeding tubes, antibiotics, transfusions, etc. When they arrive in the emergency room with the patient, these orders are immediately implemented and require no interpretation by emergency physicians. They are appropriate for seriously ill or elderly, frail patients.
More information about POLST can be found at polst.org.