I am convinced that bioethics is now inextricably bound with universal human rights. Unless we adhere to an intrinsic human dignity approach, a terrible oppression against the most vulnerable among us could be unleashed–justified by the excuse of all excuses in the modern world; the relief of suffering. For example, we already see advocacy for harvesting organs from people diagnosed to be in a persistent unconscious state.

Does this mean we must embrace a harsh vitalism, in which a patient is forced to stay alive on machines, no matter what? Absolutely not. As the Christian theologian Paul Ramsey wrote 40 years ago, we need to treat patients as “persons” in health care, which means, among other things, that people have a right to say no to unwanted interventions even if it means they will probably die sooner as a result. That was the vision also of the devout Anglican English social worker, Cecily Saunders, out of which came her great calling to create the modern hospice concept of care.

But people should not be forced off life-sustaining treatment, as in this horrible story, absent a clear and convincing need in the interests of the patient. To do so treats them as so many non persons–and this idea of the so-called human non person is explicitly stated as a predominate approach a in contemporary bioethics. Such a relativistic view of human life denies our intrinsic dignity, and claims that we must instead be individually measured to determine our capacities so that our relative moral worth can be judged. Such relativism sees some of us as having lower value than others of us, which leads to dark places such as the the so-called “duty to die,” already advocated (currently, as a minority view) in bioethics generally. (For those interested in an explicitly Orthodox take on bioethics, I recommend reading the books of the bioethicist and Orthodox priest, Fr. John Breck.)

I will be focusing quite a bit on the human rights connection with bioethics in my work as we move forward.

Original Hospice:
When I trained to be a hospice volunteer in the 1980’s, hospice aimed to help dying patients stay as alert and in touch with themselves and family members until the end, to plan a good death, to heal relationships, to make peace with your God and yourself before death. The point was to wait until the illness killed the person. Usually the patients had cancer, many with pain, but the pain meds were well tolerated and actually the person stayed quite alert on them, able to talk with friends, family, priests and to be alert and aware “themselves.” You would hear stories of last words and songs sung together and saying good-bye to Dad or Mom one at a time. How? Depending on the location and nature of the cancer, they might have a feeding tube or with cancer might simply be able to eat and drink without difficulty with the cancer eating up the calories. The PEG feeding tube if placed (an easy bedside procedure) could be flushed and used by family members. The person would eat and drink or receive the appropriate nutrients and water until the body itself stopped being able to process these, at which point it would reject these. At that point the person would lose their appetite, but not be depressed, just feel uncomfortable eating. If a feeding tube were in place, the person would start to have difficulty taking it in, easy to see, so the amounts would be lessened so the person was not bloated or uncomfortable from being overloaded. The dying process usually took a day or two once underway. There was no guilt, all very natural. Nothing done to hasten death. A simple auxiliary system for food and water as long as appropriate and helpful, much as you would do for a child with a serious infection who didn’t feel like eating or drinking. Optimizing quality of life until the end. I still hear wonderful stories about cancer patients who receive this very special end with hospice. What an achievement.

Perception of physicians about quality of life versus perception of the elderly or disabled
Studies show that physicians evaluate quality of life and satisfaction of their elderly or disabled patient much differently than the person himself. This is understandable due to the younger age or better health of the physician who simply hasn’t experienced and adjusted to a different kind of life. But a disabled or elderly person may have a rich memory life or an enhanced appreciation and gratefulness for the “little things” they can do or an interior spiritual life not yet developed by the busy physician. The real danger lies in believing we as a physician can know what is best for anyone else but perhaps especially for those least like us — the elderly and disabled. On the first day of med school, Dean Corn essentially advised, “You are not God, so get over it.” Excellent advice. Our patients may want to live very much.

Changes in Hospice:
Hospices were tempted to change when Medicare funding became a factor. At the same time, neurodegenerative illnesses became more prominent in the Hospice population. Some hospices are pro-life and pro-quality of life and are marvelous. Some seem ignorant of the physical realities of dying, which are quite different depending on the diagnosis. Some are just plain greedy. So we need to be aware.

Warnings:
What may happen now? A person with Parkinson’s, for example, starts to have trouble swallowing. They are a little afraid of eating and drinking as they start to choke. They automatically eat less and drink less and begin to feel a little peaked. They go to a neurologist and tests are done on swallowing and they may try to adjust their diet to something more tolerable like a thickened liquid. At some point they choke and aspirate (get food in their lungs) and get pneumonia. Maybe the nursing home pushes the next step, maybe not. Maybe the family or doctor is pro-life, maybe not. So now what? The person is simiply starting to become dehydrated and malnourished and prone to infections. The next advisable step would likely be a PEG tube, placed in a bedside procedure by a surgical team in the hospital or perhaps now as an outpatient surgery. This is a small tube inserted in the stomach with the end taped down unless hooked up or used for meds from a rubber syringe. The family can easily clean and maintain it at home. Usually there are few to no problems.

But will it be recommended or allowed? Rose Kennedy’s PEG tube was described by her docs as a simple procedure to restore nutritional balance — a definition I would endorse. In a famous case, however, a nursing home decided a happy somewhat demented impoverished patient could not have the procedure because it was highly risky and might truly harm her. What a difference in description. The case went to court fortunately.

Personal dynamics
Several personal factors are at play. Our American culture is death-denying, death-fearing, pain-avoidant and self-absorbed. We don’t want to watch people suffer, we don’t want to spend our time taking care of folks. And, more sinister, we may not want to spend an anticipated inheritance from them on them, whether we realize it or not. If we had conflicts when they were healthy, we may act out to “get them back” when they are weaker. So we can rationalize a lot, especially if the doc does too.

Examples:
~A man with Parkinson’s started to have swallowing problems. He got weaker as he could eat less without choking. He was less interested in life, and one family member wondered if he were in the last stages of Parkinson and perhaps even dying since he seemed withdrawn and had less of an appetite, “end signs” she thought. He went to his long-time neurologist who said, well it’s my philosophy that you eat what you can and when you can’t, then you just adjust to that, and that’s that. The man became extremely depressed. His daughter insisted on a second consultation, got an entirely different upbeat answer that a PEG tube was simple to place and was just the thing. That done, her dad immediately perked up mentally and physically since he had actually been dehydrated and malnourished. He and his wife began to travel again, quite happily, he began to go to work with her and to work on projects at home. A totally different man with a big smile. He stood at his daughter’s graduation.

~A gastroenterologist colleague is often called to the ER with a tragic situation. An elderly emaciated person is brought in from a nursing home so dehydrated he is delirious and no vein can be accessed because there is not enough fluid in his body. She puts in a PEG tube and wonders why on earth the nursing home or family allowed this deterioration to occur. Why wasn’t the PEG tube put in months before? Results vary. It may be too late or the person may “plump up” and normalize. But they go back to the bad situation. Preventable, tragic pain and suffering and possible early death.

~A person with a serious chronic or terminal nonpainful condition becomes depressed and loses his or her appetite because of that. Instead of doing a work-up for depression, the family or “the wrong” hospice when called in decides this must mean their loved one is now dying. This hospice may now go into the “death scenario” and stop food and water and the usual medications. The patient may request this due to his depression or he may believe that the family actually called in hospice and want to stop trying because they are tired of having him around or having to deal with his illness. But the person doesn’t die within a day or two. Because the body wasn’t dying. And now the long wait and pain and suffering set in. Dehydration and starvation are painful and uncomfortable. Untreated infections are painful. So now there is true pain and suffering. So now the medications start to blunt that pain but they also put the patient “under” because unlike with cancer, he didn’t need those pain meds and hasn’t habituated to them. His consciousness is impaired. He can’t make plans or say good-bye but he is quiet. That is easier for the family and for hospice personnel too. He feels very hot because he has no water in his system. His kidneys shut down, he becomes more delirious from the kidney failure toxins now assaulting his brain which itself is dehydrated. Hunger gnaws. But he is quiet, medically paralyzed from thinking, expressing, feeling, often by pain medications. He is “allowed” to have ice chips sometimes for comfort if not obtunded. But he is burning up from anticholinergic meds or dehydration. Depending on previous health of the person, this can go on for days or even weeks. The disease did not kill this person. This pain and suffering and early death was avoidable.

Who can help, educate, and prepare us to advocate for lives?

1. Mr. Smith’s website.
2. Dr. Tristram Engelhardt’s books.
3. Pro-life physcians, nurses and medically aware priests and ministers.
4. Hospice Patients Alliance: http://www.hospicepatients.org. The goals of original hospice and the warnings about today’s hospices are spelled out well there. Be sure to read the Euthanasia section for cautionary tales. An indispensable resource.