This is the second in a four-part series.
Secular Western medical ethics tends to be principlist and procedural. Two crucial core principles in medical ethics are autonomy and informed consent.
The affected persons (often shorthanded as “patients,” although we must remember the dangers of reducing persons to patients) must be the ones to make the decisions related to their care — meaning their autonomy, or self-rule, must govern. In order to make sound autonomous decisions, patients must be offered truthful, relevant information related to the choices that they face, to which they respond by offering informed consent as they choose among treatment options.
This is hard enough in the best of circumstances. That’s because average patients are not medical experts; they are injured or ill, and they feel overwhelmed by the choices placed before them, sometimes by medical professionals who have lost the ability to speak comprehensibly to regular people. Often, patients face the most difficult choices at the very moments in which their decision-making powers are greatly weakened or even nonexistent — when they are medicated, severely injured, ill, semi-conscious or unconscious, or gradually losing their intellectual strength and abilities due to conditions associated with extreme old age.
Anyone with much hospital experience as patient, health care provider, or both, can easily attest to how imperfect are the processes for protecting patient autonomy and informed consent.
Medical practice, ratified by law in many nations, has responded to these difficulties, in part, by offering procedures for declaring one’s choices in advance. In the United States, these first were called living wills and then advance directives. These have moved into the realm of standard documents that states provide, and hospitals, doctors or lawyers deploy, to help individuals make medical decisions in advance. These documents generally are framed today as offering a spectrum of choices concerning how aggressive people would want health care providers to be in sustaining their lives under such conditions as their severe brain damage or permanent dependence on a breathing machine.
“This is a fearsome, and fearful, responsibility.”
There are three fundamental problems with such documents. First, they assume a continuity of preference between, for example, a healthy 35-year-old person filling out some papers and a gravely ill 75-year-old in a medical crisis. Second, these documents are, and can only be, vague and generic, whereas medical situations are detailed and specific. Third, the whole advance directive paradigm fails to take account of the fact that when most people head to the hospital, they bring not just a document (if they even do that) but also loved ones who almost always will become the central decision-makers regardless of what a document says.
This is why the move to supplement or replace advance directives with a document that we call in the U.S. “durable power of attorney for health care” has been wise. Rather than vague direction specified years in advance by an individual, when that same individual names a power of attorney for health care (sometimes called a health care surrogate or proxy decision-maker) they name a trusted person to make decisions in their best interests.
Health care surrogacy is grounded in the concept of substituted judgment. The proxy substitutes their judgment for the disabled patient, either by attempting to do just what the patient said in advance they would have wanted, or by altering or overriding that advance judgment based on the proxy’s determination of what is best for the patient in the precise situation.
Even with a proxy, patient autonomy is being respected at a legal/moral level because the patient is the one who has designated the proxy for just such a moment. But after that, the proxy supplements, aids or even substitutes their judgment for that of the patient who is no longer able to function autonomously.
This is a fearsome, and fearful, responsibility. Anyone who has ever been a health care surrogate — as I was for my father — knows this to their core. The role has its profound moral complexities, including the issue already alluded to just above — whether the proxy must do what the sick person attempted to specify in advance or whether they might need to make a different decision based on all relevant factors now emergent in the health care crisis.
Complicating matters is that the interests of the proxy are not necessarily identical with that of the gravely ill patient. Perhaps we are talking about a child watching a small inheritance draining away day by day through expensive end-of-life care of their parent, thus creating a financial incentive to discontinue treatments. Plus, even the most loving proxy — again, consider a loving spouse or child — is dealing with their own acute trauma as they watch their loved one suffer and perhaps move toward death, so their own functioning is somewhat impaired. Or perhaps the proxy has unresolved issues with the loved one and cannot bear to make a decision that might lead to a quicker end because they need or hope for more time or for one more crucial conversation.
My own several end-of-life experiences with dying loved ones lead me to the conclusion that the autonomy/informed consent/substituted judgment ethical proceduralism does not at all capture what bedside decision making is like when a dying person is surrounded by one or more people who actually love them.
What a sterile formula: Patient A fills out a form in 1985, and the decision making of their loved ones by the bedside is supposedly irrelevant compared to this old form. It does not happen that way in real life, and I submit that it should not happen that way in real life.
“What is really going on in that hospital room or nursing home involves a community (a family, usually) not just a once-autonomous patient.”
That’s because what is really going on in that hospital room or nursing home involves a community (a family, usually) not just a once-autonomous patient.
I submit that the first ethical issue is therefore not so much who decides, but who accompanies.
In the best case, a dying person is accompanied by a person or people who love them fiercely and who will do everything they can — in their grieving, addled, imperfect way — to love their person faithfully to the very end. Another way to say it is that the covenants that have bound the dying person to whoever is family for them are tested and revealed at the bedside. What we should all want is to have some person or persons with us when we are fading who love us dearly and who will do their best for us as we meet our death. But we are not going to find such a person the week before we die.
When one once experiences the total vulnerability of a dying person, and the ineffable comfort they feel when they are surrounded by love and know that decisions are being made for them solely out of covenant fidelity, it becomes utterly clear that it is covenant love far more than legal documentation that ensures the proper care of the dying.
“This was a staggering burden. But we did it.”
My father’s decision-making and caregiving community ultimately included my two surviving sisters, my wife, my brother-in-law and myself as his official proxy. In the penultimate stage of his life, when he was still lucid, he reached a point where he said he was no longer able to make decisions, and we needed to do it for him. Pretty much his last decision was to agree on in-home hospice care. After that, we were responsible not only for making Dad’s health care decisions, but also for executing them. This was a staggering burden. But we did it.
A society like the contemporary U.S., in which family dysfunction is so high and lifetime marriage so rare, raises profound questions as to what health care at the end of life is going to look like. It certainly seems that more and more people will die alone, utterly dependent on the good will of the health care professionals who will be the last ones to accompany them on their earthly journey. Thankfully, most health care professionals also are aware of their own covenant responsibilities. But doctors, nurses and aides are not family members and cannot be expected to offer what families do.
The dying process is often awful. All I dare hope is that I am accompanied not mainly by people who will respect my advance directive but by family members who genuinely love me and will do their best for me to the end.
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