“I’m a pretty-well-educated layperson when it comes to medical care; I know how to ask good questions of my doctor. But ultimately, he’s the guy with the medical degree. So, if he tells me, ‘You know what, you’ve got such-and-such and you need to take such-and-such,’ I don’t go around arguing with him.” — President Barack Obama, May 3, 2009.
Obama goes on to speak, with genuine feeling, about his grandmother’s decision to have hip replacement surgery after she was diagnosed with aggressive terminal cancer: she died two weeks after the surgery. Although he would have been “pretty upset” if someone told him she could not have the surgery, he questions whether an operation that will not prolong life is a “sustainable model” for medical care. The president proposes to seek guidance from a national “conversation that is guided by doctors, scientists, ethicists” but is “not determinative.”
He’s right: we need to talk about end of life decisions. They are difficult, costly, and potentially destructive for surviving family members. Obama realizes that the bevy of experts he cites might have counseled against the operation. Should he have listened had doctors told him not to treat his grandmother or that a swift passing was best for her?
Surprisingly, this is the advice that many doctors currently give — or suggest — to families of patients suffering from so-called end-stage dementia, and they are backed by hospital “palliative care” units and “ethicists.” These latter say they want to help families make their own decisions, but health care practitioners have an agenda that they pursue aggressively: the speedy demise of the severely demented.
Hospitals deny that they are practicing or urging euthanasia. I think they are.
The most well-known cause of dementia, Alzheimer’s disease, has been diagnosed in some 4.5 million Americans, and perhaps as many more suffer from other causes of dementia. Exact numbers are hard to come by because death certificates often list only resulting complications. Dementia is a progressive deterioration of mental functioning. In its advanced stages, the centers of the brain that control appetite cease to function; patients lose their desire to eat and, eventually, their capacity to swallow. Untreated, they starve to death. A decade ago, physicians commonly installed feeding tubes in these patients, and a large study showed that patients could survive from one to three years with this procedure.
End-of-life health care is costly, and several recent small studies have seemed to show, against common sense, that patients with feeding tubes do not survive longer than those who do not receive them. When pressed, physicians acknowledge that these small studies are inconclusive, but they nevertheless embrace them. It is hard to imagine another case where inconclusive results in a handful of small studies challenging long-standing practice in a life and death situation would trump practice. When it comes to the elderly, though, the medical profession seems to have a different set of rules. So it is that physicians now counsel families not to treat the severely demented.
Death by starvation appears to be as gruesome for the patients to endure as for their families to witness. However, medical professionals insist, without evidence, that the demented cannot feel pain. It is a cruel irony that these same patients, supposed so demented as not to suffer pain, are credited with choosing not to eat. Medical professionals give patients a swallow test: they put some ice in the back of the patient’s throat. Patients who swallow the ice are declared to be capable of swallowing: they are, therefore, choosing not to eat. It is as if doctors would test the muscles in a stroke victim’s arm, find them intact, and declare that he had chosen not to use the arm. The argument is used to mollify families. Doctors recognize the desire not to eat as a symptom of dementia.
That the loss of appetite is a symptom of underlying disease makes all the difference in how the underlying disease should be conceived. Medicine cannot reverse dementia, but there are many other diseases that it cannot treat. Doctors routinely treat the symptoms of terminally ill cancer and AIDS patients, especially when it is those symptoms, rather than the disease, that pose an immediate threat to life. The lives of patients with dementia can often be prolonged with appetite stimulants and feeding tubes. These lives are highly constricted, but there is no indication that they are painful. Doctors lack the training or the authority to judge the quality of others’ lives, yet they are deciding who lives and dies. Their reluctance to treat dementia patients is probably rooted in financial considerations, but they give it a veneer of respectability by speaking as if they were somehow respecting the patient’s will and interest.
No one speaks of euthanasia, but how could allowing patients to starve to death not be euthanasia? Medical ethicists often distinguish between killing and letting die. As they see it, administering a lethal injection would be euthanasia; letting a patient decide not to eat is letting nature take its course. This distinction might make sense for a patient battling aggressive, terminal cancer who faces an extraordinary procedure with little chance of success. It does not apply to the demented who can still be nourished: they are not dying from their diseases but from an easily treatable symptom. Moreover, hospitals apply the distinction not only to the most severely demented, but by a slippery slope to patients who recognize and enjoy their families but have lost the capacity to feel hunger. It takes aggressive lobbying from family members to have appetite stimulants prescribed. Were demented patients not old and not disabled, no one would justify withholding treatment.
A cost-benefit analysis that measured monetary costs of treatment against the patient’s future economic productivity would surely decide against treatment. Is this the proper measure of a person’s life? The cost-benefit analysis should consider all sorts of value that person’s life has, including his value to his family and society. No child could survive without parents (or caregivers) providing for his most primitive needs. The opportunity to care for disabled parents scarcely repays this debt, but it has its own value. On the other side, a child who allows a parent to starve to death loses far more than his parent. What sort of society have we become if we cannot spare the little it costs to sustain for a few months those to whom we owe our lives, our upbringing, and our prosperity? What kind of people are we for whom the aged are no longer worth sustaining?
President Obama’s grandmother had an expensive operation that had the potential to alleviate pain though it could not sustain her against a terminal illness. He said: “I don’t know how much that hip replacement cost. I would have paid out of pocket for that hip replacement just because she’s my grandmother.” This is just the attitude that people should have toward family. Should a government sponsored “sustainable model” force Obama to abandon this attitude or insure that we can all practice it?
Saving a few dollars on health care costs matters not at all if we lose our humanity in the process.
Update — A response to comments by Edward Halper:
Dear Cynthia Yockey,
Your comment (#2) misses the point and misrepresents my article.
My point is that patients who are treatable, often quite simply, remain untreated because they are in decline and doctors or relatives have decided that their limited lives are no longer worth while. Many demented patients can be sustained by taking a pill to stimulate their appetites. To force such patients to go, untreated, to a hospice to die is wrong.
That demented patients “die without suffering longing for food” does not mean that they do not feel pain. Most people who fast for more than 24 hours do not feel hungry, but they do feel miserable. There is simply no good evidence that demented patients who die from lack of food feel no pain. On the contrary, to judge from their behavior, they feel the same pain that other victims of starvation feel.
My piece was provoked by my 90 year old father who was in the hospital last January. We heard all of your comments, and more, multiple times from the hospital staff. They were ready to declare his life over. Then, they finally treated my father with an appetite stimulant. He’s doing fine now. His life is constricted, but he is not in pain.
Generally, a person on a feeding tube can be maintained at home by a caregiver. Hence, acute care and hospice care are not the only two options. It is also wrong to suppose that feeding someone through a stomach tube is a painful forcing of food into a body that is “shutting down.” It is appetite centers in the brain that are affected by dementia, not the capacity to take nutrition.
Eventually, a person on a feeding tube will no longer be able to be sustained. As I said, according to the largest study, this occurs 1-3 years after the tube is inserted. (More recent practices, like appetite stimulants, may have reduced the time that a tube will sustain the patient.) At that point, they may need a hospice. Are we supposed to deny them treatment in the mean time? We might as well deny all terminally ill patients life-prolonging treatment! Does it make any sense to argue that because patients will eventually succumb to an illness, that they should not be sustained before that eventuality?
The issue is not the patient’s “liberty to decide individually which part of the health care system … to die in.”
Demented patients are not making these decisions. The issue is whether people who are disabled and no longer able to make their wishes known get to have the option of life-prolonging medical treatments. Or do we, or our government, declare the lives of the demented without value?