In America Death is Optional

COVID-19 exposes chronic failure in dealing with the inevitability of death. Reform is desperately needed.

A physician and I were recently discussing an ICU patient, the subject of an ethics committee meeting that afternoon about ending medically ineffective (a.k.a. “futile”) care. She said, “In India, death is seen as inevitable; in England, it is accepted. In America, it is optional.”

The COVID-19 pandemic has shown weaknesses in our so-called health system. This virus is especially cruel to our elders. When it comes to end-of-life decision-making, we are now at a critical mass, the result of chronic failure to follow the science and reform laws governing medical decision-making when we can no longer speak for ourselves and death is inevitable. 

Much of what we spend on healthcare in our lives – I’ve heard estimates of 30 percent – is spent in our last days, often only prolonging death, often against our wills. Death row inmates are spared cruel and unusual punishment, but not grandma. In the ICU, we had a joke, “death…or chi–chi.” (Google it. Warning: you will find some rather obscene versions.)

Pre-pandemic, problems with end-of-life planning were showing signs of resolution. People are speaking up for themselves in the form of advanced directives, accompanied by frank discussions with friends and family about their end-of-life wishes. Provider Orders for Life-Sustaining Treatment (POLST) was conceived as a document allowing firm enforcement of a patient’s wishes for end-of-life treatment.

But a POLST is easily invalidated. Many are improperly completed. In many jurisdictions, a POLST is set aside if a family member objects to its directives. Even when there is a legally specified surrogate and futility of treatment is settled, things can still go awry. In many jurisdictions, family consensus is required before an end-of-life decision is finalized.

Daughter Judy can fly in from outer space, with mommy issues for days, derailing the process; days are then wasted, with the same outcome. Please don’t judge me for saying this: if daughter Judy had to pay even 10 percent of the cost of care, we would likely not have such a conversation again. Tell me I am wrong. 

Beginning two weeks ago, another ugly scene was playing out. Two nursing-home patients were brought to the ICU. Both were hopelessly sick with COVID-19, both had public conservators, both had “full treatment” POLSTs. They essentially could not die at the nursing home, but die they will, on ventilators. I questioned the primary care physician about the POLST. His reply: “I had no choice.” He was right. If you have a public guardian, in California and other jurisdictions, end-of-life decisions are left to a judge, not medical science; you must go to court. The POLST is a ridiculous formality. 

Many details of the POLST are left to the states. But states’ laws are a patchwork, with insufficient commonalities. The federal government has a role in promoting a uniform approach without being overly prescriptive if it will act.

At a minimum, a surrogate hierarchy can be established, and medical science supremacy affirmed. States must accept other states’ marriage licenses, birth certificates, and adoptions, so why not have universal end-of-life rules? My home state of Arizona has laws that are very protective of the elderly, and in that protection, they provide for end-of-life decision-making that is reliable.

In California, where I now live and will one day shuck this mortal coil, the law favors a preserve-life-at-all-costs attitude. Even our assisted suicide process is unwieldy and Byzantine. 

At least this is how it looks on the ground. 

How hard can this be? Hard. It will take remarkable political will. Instead of medical science-driven decision-making with patients and surrogates, we have a set of inconsistent moral judgments aligned with the belief systems of those with the most political clout. Statutes anywhere on the continuum carry risks, from the laissez-faire to the highly restrictive. Do physicians have the public trust necessary for permissive laws to work? What will it take to get there? 

If we resist reform, there is a price. Will we accept healthcare rationing? Will we put up enormous funds to provide excess capacity of ICU beds, ventilators, trained staff, and every kind of medical device and diagnostic capability, constantly maintained, and replaced when obsolete? Will we continue to underfund long-term care so that if we are to keep people alive indefinitely, there are facilities to provide such things as long-term mechanical ventilation? Will we finally have a discussion of reasonable tort reform, protecting providers making tough choices?

What this pandemic has brought into sharp relief is how ill-prepared we still are for letting nature take her course. MedLearn Media is dedicated to monitoring regulatory enforcement. This is one cause I have asked our readers to consider taking up.