The thrilling rescue of the American POW’s in Iraq showed the American can-do attitude in all its glory. Whatever it took to release the POW’s — whatever equipment we needed, whatever it cost — we did it gladly to rescue them from pain and danger and imprisonment and bring them to freedom.
Bitter Counting and Pessimistic Calculations
What about the Americans trapped and neglected in hospitals and nursing homes — do we have a similar can-do attitude? The answer is no. We bitterly count every penny we spend on these people and even project pessimistic monetary calculations far into the future. After a hundred days in a nursing home we simply stop paying.
What about their trapped families, waiting in hospital corridors for doctors who don’t tell anybody when they are coming? What about their family at-home caregivers, exhausted and isolated souls trying to make up for the lack of medical continuity of today’s health care system?
A chorus of books and articles over the last decade attributes this suffering, remarkably, to medical progress, which, it is claimed, has delivered patients from the hands of the diseases that kill you quickly into the hands of chronic debilitating diseases.
This is very far from the truth. It is not these diseases that are causing the psychological misery that so many are going through today. It is the way we handle these diseases.
The contagious diseases of the past — smallpox, yellow fever — inspired a very realistic terror. Nevertheless, courageous researchers risked their lives to study these diseases, and they have been overcome forever.
What about the chronic diseases about which we have heard so much? The very word “chronic” reveals our bias of hopelessness. “Uncured” would be far more accurate. Our attitude toward these diseases induces a state of depression and clouds our judgment about the persons who suffer with them. Like a clinically depressed individual who finds ordinary chores too taxing and lets his affairs fall into a state of neglect, our society has declared — without realistic discussion — that the care of these people is too overwhelming and refuses to pay for it.
Like the person who is so depressed that his thinking is clearly affected, our society is inventing excuses for not dealing with chronic diseases, excuses that, when examined, are less than rational. Here is one example of faulty reasoning: since these patients would have perished in an earlier era, somehow their continued well-being is not our responsibility. There is an even more dangerous extension of this idea, formulated according to a calculation in which such a person is viewed as “extra,” that is disposable; his or her life is somehow “not a life.”
If we would focus on the quirks of human psychology that keep us from doing what needs to be done for the chronically ill, we will immediately begin to make giant strides in conquering at least the psychological misery that currently accompanies these disorders, and possibly more.
We are Neglecting the Duties of Love
Our neglect has been more serious than people realize. There has been much talk about medical rationing. This inspires outrage when the eliminated treatments are clearly necessary for life. However, our society has vastly underestimated what is necessary for life. The expenses that have been cut in our hospitals and nursing homes might have seemed tolerable academically, but we are discovering that they are not tolerable practically.
Human beings become distraught when they feel neglected. Patients who are left on wards without enough nurses and without enough physical therapy suffer emotional torture even if they don’t meet the diagnostic criteria for clinical depression. Our medical settings have crossed over the line of what people can tolerate without giving up. Those who do recover and go home are so traumatized that they never want to return to a medical setting, no matter what.
In our recreationally-oriented culture, the sick feel like a burden, to us and to themselves. Visiting them is not the high priority — the imperative of charity and neighborliness — it used to be. This problem increases the suffering and isolation of the chronically ill.
If we do not pay attention to the critical psychological needs of patients, the result will be death. Like disgruntled teenagers who find themselves companions of similar mentality and form a gang, disgruntled sick people are coalescing into a destructive action group, the assisted-suicide movement.
Physician-assisted suicide — the attempt to legalize lethal prescriptions — was an in-your-face way of “helping” people die which Americans have almost completely rejected. It is legal in only one state, and even there, it’s legality is being challenged.
However, advocates of physician-assisted suicide have already prepared another way for people to die legally with medical help.
This summer, an Oregon psychiatrist, Dr. Linda Ganzini, and her collaborators published, with great fanfare, an opinion survey of hospice nurses regarding the quality of deaths of hospice patients who decided to die by refusing food and fluids. The authors explicitly stated that this was a possible alternative to physician-assisted suicide.
In spite of the fact that it is not really very surprising that hospice nurses — who are hired specifically to keep patients comfortable — would report that their patients were comfortable, the results of this study were widely touted in newspaper articles across the country as a scientific finding and have been cited ever since as authoritative “proof” that starvation is a peaceful death.
Faye Girsh, of the Hemlock Society, now called End-of-Life Choices, has written Patient Refusal of Nutrition and Hydration. PRNH, as it is referred to, appears to be a compromise which allows terminally ill people to end their lives and still have ministrations from hospice and from a doctor.
According to this concept of Patient Refusal of Nutrition and Hydration, far from having to seek a Dr. Kevorkian, all a patient would need would be a doctor’s opinion that he would die in six months to meet the admission requirement for hospice. Instead of dying illegally by experimental methods in an uncomfortable van, he could die in his own home with medical assistance — that is drugs to render him insensitive to the pangs of his own starvation — with the bill paid by your Medicare dollar.
Clearly, those who are troubled by the idea of physicians assisting patients to die must now turn their attention to hospice.
Our Alternative is Morphing into a Trap
This is a very disagreeable prospect. Hospice has become as American as apple pie. American children are skating, swimming, and singing to raise money for hospice. Because of the prohibitive cost of in-home care, many families don’t have the leverage to resist the offer of hospice care.
Moreover — since hospice has been billed as a bulwark against physician-assisted suicide — opponents of physician-assisted suicide are afraid to criticize hospice lest they unleash a process that would result in the reemergence of a demand for physician-assisted suicide.
But if the hospice movement is morphing in a direction that makes it inviting to supporters of assisted suicide, there is no choice but to examine it more closely.
Lest you think that all hospice admissions are bedridden cancer patients on the verge of dying; and lest you think that the life-prolonging treatments that they are rejecting are difficult chemotherapy and radiation treatments with a low probability of prolonging their lives appreciably anyway, think again. Hospice has become a billion-dollar industry that recruits patients of all diagnoses.
Despite the fact that it is very difficult to tell which non-cancer patients are going to die in six months, hospice admission requires only a doctor’s opinion that this is the case.
Writing in the Journal of the American Medical Association in 1999, Fox and her co-investigators tried out different sets of criteria for predicting six-month mortality for non-cancer patients with heart, lung, and liver disease. None of these sets of criteria were successful. These patients, by virtue of the nature of their diseases, can survive for long periods of time, for years, in fact, until they reach a sudden, unpredictable medical crisis.
Should these non-cancer patients elect to go to hospice and choose to forgo life-prolonging treatments, what sort of life-prolonging treatments are they forgoing? In hospice, any “treatment” may be omitted, whether burdensome or not. Many patients may be forgoing the sorts of maintenance medications that are taken for granted in curative treatment settings: medications to regulate blood pressure, keep the airways open, keep the coronary arteries clear, keep hemoglobin levels healthy, prevent blood clots, regulate fluids. In hospice, even when treatments are given, they are sometimes given for a different reason and in a different way. For example, when oxygen is given and considered to be a comfort measure, there might be no alarm that sounds if the mask falls off. These suspensions or refusals of treatments are occurring in a setting where they can combine with high doses of sedatives and pain-killers that may severely lower appetite.
No wonder, in Fox and her co-author’s sample, that it took only 24 days for half of the patients discharged to hospice to die, whereas it took 804 days for half of the non-hospice patients to die. In discussing this discrepancy, Fox and her co-authors suggested the possibility that “patients referred to hospice care are less likely to receive life-prolonging treatment and therefore die sooner.”
Will You be Starved and Dehydrated to Death?
In hospice, food is just another comfort measure that a patient can refuse. It is not the mission of hospice to make sure that the patient lives 804 days instead of 24 days.
It is unlikely that the hospice movement as currently constituted will reject deliberate starvation and dehydration. I have not seen any statement by the hospice movement disassociating itself from this possibility.
If we attempt to prevent voluntary starvation by just changing one or two hospice regulations, but leave our health care system otherwise the same, we will be missing the point.
We have neglected people so badly that we are driving them to despair, but we can do a lot better.
The would-be opinion-makers of our society make fun of those who think we can provide treatment for everybody, but we don’t have to let them intimidate us from making an all-out effort and seeing just how much we can actually accomplish.
There is a lot of room for improvement in the way we spend our health-care dollars. The way in which Michael Schiavo distributed the malpractice award that he received for Terri’s rehabilitation — a little for rehabilitation and much for legal fees — is not that different from how our society spends for health: a little for attention to patients and much for an army of administrators to make sure that nobody gets too much attention. Our doctors don’t have enough time to spend with patients because they are so busy arguing with administrators.
Like the depressed person who appears to have little energy because his energies are actually absorbed in an inner struggle, our health-care dollars appear insufficient because they are often used for counter-productive purposes — some for treatment and much to talk people out of treatment. Foundations have spent millions on “educating” Americans — through a barrage of television programs, newspaper and magazine articles, town meetings, and presentations — to choose less end-of-life medical care. If all this money and energy had gone into health care, who knows where we might be by now?
Can we summon up our American can-do attitude and truly tackle our health-care problems? Can we pay attention to patients’ physical and emotional comfort within the protective context of curative medicine so that our patients and their families don’t despair or get traumatized? Can we do it for more than just the hundred days currently covered by Medicare? Can we spend less on trivialities and more on health care during these crucial years when the development of new medical infrastructure is undergoing an awkward stage?
Can we overcome our irrational reluctance to allocate health care dollars for pain control and home-based personal assistance?
If we cannot, the advocates of assisted suicide have big plans for us.
© Copyright 2003 Catholic Exchange
Dr. Olevitch is a clinical psychologist and author of Protecting Psychiatric Patients and Others from the Assisted-Suicide Movement: Insights and Strategies (Praeger, 2002).
