Many Americans took a good step for themselves and their loved ones after getting shocked by learning about treatments, like prolonged machine ventilation, that coronavirus patients may undergo. Not for me, the healthy may have decided. They committed to determining end-of-life wishes, committing these to “advance directives” or POLST (portable orders for life-sustaining treatment) forms.

That may just the start of what people need to do with these formal documents, now easily found online, reported Paula Span, the New York Times’ “New Old Age” columnist. They need to do more. (Hint: Some of this even may be covered under older adults’ health insurance, especially Medicare).

They need to ensure that their doctors and their lawyers, too, support their recording of their end-of-life plans. These must be as clear, specific, and concise as possible, so there can be no mistaking what patients want with vague discussions, such as avoiding “heroic” or “unusual” interventions. They need loved ones to know where they may be stored, especially knowing how to locate them and give them to health workers, including first responders.

They also could ensure that favored institutions they might end up in — that big, academic medical center or the fancy hospital nearby — have definitive policies about checking if patients have POLSTs and that they will respect these.

Span, to her credit, reported that the civil judicial system has become a bulwark of protections for patients and their loved ones against caregivers’ cavalier disregard of documented end-of-life wishes. This can be a different kind of medical malpractice, judges and juries have decided, she reported, quoting Thaddeus Pope, a professor at the Mitchell Hamline School of Law in St. Paul, Minn., who follows end-of-life legal cases:

“Lawsuits charging negligence or malpractice by hospitals and doctors typically claim that they have failed to save patients’ lives. More recently, though, some families have sued if providers failed to heed patients documented wishes and prevented death from occurring. ‘In the past, people have said, “How have we harmed you if we kept you alive?” ‘Now, courts have said this is a compensable injury.’”

Span dug deeper with Pope, quoting him, thusly:

“In an interview four years ago, Mr. Pope noted that nobody at that point had received compensation from any ‘wrongful life’ suit. Since then, several plaintiffs have received hefty payments, and courts have weighed in as well.”

These include:

• Plaintiff Jacqueline Alicea, Span reported, won a “$1 million settlement from Doctors Hospital of Augusta [Ga.] and a surgeon there (from their insurers, more accurately). They had placed her 91-year-old grandmother on a ventilator, disregarding both Ms. Alicea’s instructions as her grandmother’s health care proxy and her grandmother’s advance directive … The Alicea case, already being cited in other lawsuits, may have an impact because after the trial court denied a motion to dismiss it, the state’s Court of Appeals and its Supreme Court both ruled that the suit could proceed. The parties settled on the eve of a trial in 2017.”
• The estate of Rodney Knoepfle in Montana won from a jury what the newspaper said “is believed to be the first verdict in a wrongful life case … $209,000 in medical costs and $200,000 for ‘mental and physical pain and suffering’ …Debilitated by many illnesses, Mr. Knoepfle had a do-not-resuscitate order and a POLST form in his records at St. Peter’s Health, Helena’s largest hospital. ‘He’d suffered more pain than anyone should in a lifetime and was comfortable with going, if it was his time to go,’ said Ben Snipes, one of his lawyers. But a medical team resuscitated Mr. Knoepfle — twice. Tethered to an oxygen tank, he lived another two years before dying at age 69. ‘The last few months, he was almost incoherent with pain, living in a hospital bed, getting morphine crushed into his pudding,’ Mr. Snipes said.”
• Beatrice Weisman, 83, Span reported, “had been hospitalized after a stroke in 2013 when doctors at Maryland General Hospital found her turning blue and resuscitated her, an action that her advance directive … specifically prohibited. The Weisman family sued and in 2017 received a ‘satisfactory’ sum through mediation, said Robert Schulte, their lawyer. He could not divulge the amount but said it had helped pay for seven years of round-the-clock care, until Ms. Weisman died last October.”
• Dick Magney in California, Span reported, had opted for palliative care, and his doctors were complying, until someone reported potential neglect to Humboldt County’s adult protective services agency. The county filed a petition to take over his health care, removing his wife as his decision maker, and ordered that Mr. Magney receive antibiotics he had earlier refused. At one point, the county won temporary conservatorship. ‘It just led to him suffering longer,’ said Allison Jackson, the lawyer representing Mr. Magney’s wife. Mr. Magney died in 2015. A state appellate court ruled that the petition to remove Mr. Magney’s wife had been fraudulent. She eventually won more than $200,000 in reimbursement for lawyers’ fees and pursued a federal civil rights complaint, leading to a $1 million settlement from the county. Two lawyers representing the county now face disciplinary charges from the California state bar.”

Pope told the newspaper is a consulting with Montana lawyers and testifying as an expert witness in the upcoming California disciplinary hearings. He said he knows of other end-of-life lawsuits “pending in Georgia, Maryland and New Jersey, in addition to two malpractice cases that Mr. Grunsfeld has brought in New York.”

In my practice, I see not only the harms that patients suffer while seeking medical services, but also the damage that can be inflicted on them by the U.S. health care system’s significant problems with medical error, preventable hospital acquired illnesses and deaths, and misdiagnoses. The coronavirus pandemic has battered the system, so that it needs public support now as it never has before.

Still, we also cannot turn away from significant problems in medicine, including that its procedures can be unnecessary, painful, prolonged, and invasive. Doctors are trained to preserve and extend life, sometimes without considering its quality and patients’ satisfaction with it. They can forget that patients have a fundamental right to informed consent. This means they are told clearly and fully all the important facts they need to make an intelligent decision about what treatments to have, where to get them, and from whom. This right must be respected whether patients have decades or days and hours to live.

Patients and their loved ones should know, while they are well enough to make careful end-of-life decisions, about the realities of common and difficult clinical care for the sick or injured in dire condition.

Studies on assisted-breathing procedures — research conducted long before the current pandemic — offered stark information about them. A recent study, for example, dispelled myths about life-sustaining “miracles” of artificial breathing machines. A research team with experts from Boston, San Francisco, and Dallas studied 35,000 cases in which adults older than 65 underwent intubation and were put on mechanical ventilators at 262 hospitals nationwide between 2008 and 2015. They found that a third of patients intubated died in the hospital. (It is worth noting that as the pandemic has progressed, doctors have tried to reduce the use of ventilators and improved patient outcomes).

As for resuscitation orders and the optimism that may underlie them, for the elderly, and especially for those who already are ailing and frail, the most common procedure of CPR (cardiopulmonary resuscitation) can have poor outcomes. If patients are revived and sustain for some time, they often may experience pain: CPR may not seem invasive, but it often breaks ribs and can leave bruised patients in discomfort (rib injuries are among the most challenging, because they can affect all manner of everyday activities, including breathing, coughing, laughing, and eating). If elderly patients respond to CPR, they often then may need intubation and more.

We have a lot of work to do, individually, collectively, and in ethical and legal terms, to improve the chances we see the compassionate medicine we want at life’s end — by engaging in tough thinking ourselves, talking deeply with loved ones, and consulting with our doctors and lawyers.