The Loneliest Patients: When They Can't Make Decisions, Who Will?

The elderly man hadn’t sought medical care in 20 years when he collapsed on his way to the grocery store. At the hospital, he was diagnosed with a bloodstream infection, dementia and tuberculosis. Doctors suspected he had bladder cancer.

He’d been abusive, and estranged family members refused to help in his health care decisions. The man didn’t want any treatment, or even to be evaluated medically. But his dementia deprived him of the mental capacity to make his own decisions. Doctors kept him in acute care and treated him for TB, as public health law required, but nothing else.

Three months later, on the day his guardianship hearing was scheduled, the man died from infections. 

Could his infections, acquired in the hospital, have been treated with antibiotics? Or was there a decision not to treat the infections, to let them run their course? Either way, who decided?

Chances are, the doctor in charge did. Chances are, the decision was made “off the radar,” and did not follow hospital policy — if the hospital even had a policy. Chances are, the decision was right, but arrived at through a process that would not look good on a newspaper's front page.

The patient lived and died in Colorado, but aspects of his story are increasingly familiar in critical and acute care wards in Boston and elsewhere.

These patients go by many names: conserved, unknown and unrepresented, unbefriended, incapacitated and alone, to name a few. The sad irony is, they answer to none of them, and cannot inform their own care.

For decades, public guardians — court-appointed decision-making advocates for patients who need them — have been held up as the ideal for such cases, but funding and other support have been inadequate. And in some places, Massachusetts included, there is no public guardianship. Here, how such decisions are made varies from hospital to hospital. Some rely on private guardians; some have learned to avoid guardians.

This hardly inspires trust in the system, and the need for a process that is ethical, legal and serves the patient’s best interest is only becoming more urgent.

Why the urgency? Growing roughly commensurately with the doubling of America's senior population, the ranks of the unbefriended are set to rise from about 35 million in 2000 to a projected 72 million in 2030. In Massachusetts, people 65 and older are projected to grow in number from 860,000 in 2000 to 1.5 million in 2030.

Decisions about medical care ideally combine medical expertise about what’s wrong and what’s possible with the patient’s own wishes and values. But with the unbefriended, those wishes and values cannot be known.

In a medical system where patient autonomy rules, these patients have none.

About a half million Americans die in critical care each year, including a significant majority after a decision has been made to limit life support. How many are unbefriended is difficult to say, but the low estimate is nearly 6 percent, or about 30,000. It may be closer to twice that. In one urban hospital studied, one in four ICU patients who died was unbefriended.

In Colorado, concern over elder abuse prompted the study of this patient population. Similar studies going back three decades have been conducted by the Markkula Center in Northern California, by the American Bar Association, and the Conference of State Court Administrators, among others. Each saw a growing wave of incapacitated patients and a court system unprepared to deal with it. And each study recommended significant improvements and funding for public guardianship, but response has never met the need.

It simply costs too much, and unbefriended patients, by definition, have no constituency.

The public clearly understands the harm of hastening death, with possible exceptions for terminally ill patients suffering unbearably. But prolonging dying is often considered a lesser harm.

That is one source of the unbefriended dilemma, which pits civil rights protections against patients' best interests. And in a society that treasures individual choice so highly, a dying patient incapable of making a choice creates a profound life-and-death quandary.

Douglas White, a critical care physician and bioethicist from the University of Pittsburgh, has studied unbefriended patients closely and says, “Process is most necessary for a patient who will never leave the hospital.”

I believe hospitals need a clear, transparent process for decisions to be made internally. Any such process will spark concerns over abuse or physician bias. And yet, already there are models that are ethical, legal and worthy of public trust.

Both New York State and the Department of Veterans Affairs (the former by statute, the latter by federal policy) keep the courts and guardianship as options but give attending physicians full authority for medical decisions.

Safeguards are in place to ensure it is not the physician’s recommendation alone. Both New York and the VA require second opinions and review by a committee within the institution. Ultimately, the hospital is responsible.

Research into these patients is growing but limited. Many suffer dementia, mental illness or addiction. Some are homeless. Some have scared off loved ones; others have simply outlived them.

One small study revealed this troubling fact: Unbefriended patients continued to receive life-sustaining treatments such as feeding tubes, ventilators and antibiotics for pneumonia significantly longer than comparable patients who had decision-making surrogates.

Some patients receive too much treatment and others, too little. For many, death is prolonged. Their caregivers suffer conflict, moral distress and burnout.

In New York, for legal legitimacy, a decision to withdraw treatment with the intent of allowing death to occur must meet these criteria: the patient’s condition is incurable or irreversible; the patient is permanently unconscious and expected to die within six months; and treatment is causing unacceptable, even inhumane, suffering.

The VA policy has a curious requirement. The physician must explain to a patient that they have been determined to lack capacity. If the patient cannot understand, why require a explanation?

One reason: Capacity is not constant; for some patients, it comes and goes. More significantly, I think, the VA has created a ritual by which the physician must see the patient as a person, not an incapacitated set of symptoms.

And so it was notable in summer 2015 when a California judge ruled as unconstitutional a state law that allowed nursing home physicians to make all decisions for incapacitated patients — because the law did not require that patients be told and given a chance to object.

The ruling did not solve the problem of over-treatment and under-treatment of vulnerable patients. That problem continues, and not only in California.

But the ruling did underscore the need for an efficient and fair process that respects the patient’s best interests and civil rights. Massachusetts should protect its most isolated patients by writing this kind of policy into law. Thanks to New York and the VA, it won’t require starting from scratch.

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The Loneliest Patients: When They Can't Make Decisions, Who Will?