Patients fight hospitals (& not just Catholic hospitals) for proper care

“Suppose I wind up being taken to a hospital,” said the lady with the penetrating blue eyes and a lovely, long braid over her shoulder. “How can I keep them from doing all those things I don’t want — ventilators, feeding tubes…?”

The lady with the lush braid was among a small group of retirement community residents with whom I spoke yesterday about end of life choices. None of them fear death. All of them fear aggressive, unwanted treatment. A colleague and I had been invited to talk with them about documents (advance directives, POLST forms, etc) and legal measures that can help insure a compassionate end. But the distressing reality is that there are no guarantees.

This is where we are with health care: patients having to fight against doctors, hospitals, systems — and directives from Bishops — for the right to die in peace.

A recent Kaiser Health News article (KHN is a publication of the Henry J. Kaiser Family Foundation and unrelated to Kaiser Permanente) cited problems arising from directives to Catholic hospitals about a variety of issues. The directives, issued in November by the U.S. Conference of Catholic Bishops, changed the policy on feeding tubes, for example, from “presumption in favor of”  to an “obligation.”

“This obligation,” the bishops said, “extends to patients in chronic and presumably irreversible conditions,” such as persistent vegetative state, who might live for many years if given such care. A feeding tube is not required, however, if it wouldn’t prolong life, would be “excessively burdensome for the patient,” or would “cause significant physical discomfort.”The directive raises fresh questions about the ability of patients to have their end-of-life treatment wishes honored — and whether and how a health care provider should comply with lawful requests not consistent with the provider’s religious views. Hospitals and nursing homes do not have to comply with requests that are “contrary to Catholic moral teaching,” according to longstanding policy that, as in the case of the revised directive, applies to non-Catholic patients as well.

As the women in our group yesterday understand, you can wind up with unwanted treatment in all sorts of circumstances, not just when you’re dying.

Dr. Lachlan Forrow, a Harvard University medical ethicist and palliative care specialist, expressed strong concern about the new policy, stressing its potentially broad scope. “That gets to be a very, very large number of people,” said Forrow, who heads a panel developing recommendations for the state of Massachusetts on end-of-life care.

(A)ccording to Catholic officials and outside experts, the directive may well apply to a wider range of patients, those that it describes as having “chronic and presumably irreversible conditions,” though the organization representing Catholic health facilities downplays the impact. Experts say this affected group could include those with massive strokes, advanced Alzheimer’s disease, traumatic brain injury and Lou Gehrig’s Disease.

If a patient or family didn’t want a feeding tube “and the reason they don’t want it is they basically want to die, then the Catholic institution would explain to them they can’t cooperate with that and they would have to go to another institution,” said the Rev. Thomas G. Weinandy, executive director for doctrine at the bishops’ conference, who helped draft the policy.

Weinandy said “obviously the public should know what the directives say,” and patients and relatives “can easily download the directives or get a copy.”

Oh, sure. The EMT people are loading mom into the ambulance, and you ask them to wait until you download a few pages of papal edicts.

In the days before she died two weeks ago (in a non-Catholic hospital) my sister Jane occasionally showed signs that, though sleeping, she might be experiencing pain. My niece, who was keeping round-the-clock watch over her mother, more than once asked the attending physician for additional pain medication and was told, in a “There, there now, dear” voice that “We can’t hasten!!” My niece is a tenured law school professor.

Doctors make a lot of fuss about that “First, do no harm” business in the Hippocratic oath. Is withholding pain medication because it might cause death a few hours sooner than later doing no harm? Is inflicting painful, unwanted and unwarranted interventions for some obscure religious reason doing no harm?