In a recent article in this space, “Feeding Tube Decisions: The Real Ballot Box,
http://www.catholicexchange.com/vm/index.asp?vm_id=2&art_id=25719
I examined some of the arguments that families are hearing from health care counselors. A virtual campaign to minimize the use of feeding tubes is going on.
Decoding the Specialized Language
Although actual research findings are used by these counselors in their arguments, I showed how some of these research findings are being taken out of context and misapplied.
The correspondence I received in response to this article was remarkable.
Although I have heard it said that people don't change their minds about death and dying issues, in my experience, this does not seem to be the case. I received letters from health care professionals who are carefully reconsidering the bias against feeding tubes that they may have had in the past.
One critically important question came up repeatedly. Readers mentioned, almost in the very same words, the following concern. They asked whether once a patient enters what they called the "dying process," "food and fluids" become harmful rather than helpful. They wondered whether they interrupt the "dying process" in some way, complicating it, causing only "discomfort" but no "benefit."
Most interestingly, these readers all set this question apart from their other thoughts, specifically mentioning that they had learned this from hospice, and asking if it is true.
There are four important terms used in this question, "food and fluids," "benefit," the "dying process," and "discomfort." It is important to realize that these terms have special meanings to many hospice professionals. If you are unaware of these special meanings, statements by hospice professionals can be misinterpreted.
When religious families hear from hospice that their loved one is in the "dying process" and that "food and fluids" will henceforth not "benefit" him at all and only cause "discomfort," this is very intimidating. Families who wouldn't dream of deliberately starving their loved one may not object to the discontinuation of his food and fluids.
Families might think that the hospice nurses' determination that their relative is in the "dying process" is a rigorous medical diagnosis and that his death is imminent and inevitable. However, this may or may not be the case. It could mean that his energy is fading and he has no appetite because of his pain-killers, and since at their hospice they may not believe in "artificial feeding," the staff is simply predicting that under their regimen he will soon die.
Defining Benefit and Discomfort
When the hospice workers tell the family that the "food and fluids" they have been giving him will no longer be "beneficial," the family might misunderstand what the hospice workers mean by "beneficial." The family might think that the previous "benefit" the patient was deriving from the "food and fluids" was to receive adequate nutrition, and that now, the patient is no longer capable of being nourished.
This interpretation of the hospice workers' statement might be true under some conditions. But, on the other hand, it might really mean that the "food and fluids" they have previously been giving him were for comfort only, and now that he has faded to the point where he himself is not asking for food, they no longer see any reason to provide it.
When the hospice workers tell them that further "food and fluids" will cause "discomfort," the family might think that "discomfort" means that their family member will choke or have pain or become distended.
This interpretation might be valid under certain circumstances. On the other hand, it might mean that he is starving and dehydrated, and if they leave him alone he will fade and die without further complaints, but if they continue giving him some limited "food and fluids" to please the family, he may experience the "discomfort" of hunger!
In 1993 Dr. Robert J. Sullivan wrote an influential review of the literature on starvation, emphasizing that the "absence of hunger and a sense of well-being" reported by some could be due to "ketonemia provoked by the fast." He cites "laboratory studies" that show that "hunger rapidly reappears when ketosis is relieved by ingesting small amounts of carbohydrate." He cites another investigation showing that "hunger disappears with total starvation while semi-starvation makes food an omnipresent obsession."
This has implications for those deliberately starving a patient. He writes, "The administration of even small amounts of carbohydrate can block ketone production and rekindle hunger. Intravenous mixtures of 5% dextrose and water provide ample carbohydrate to cause this metabolic shift."
He writes as well about "anecdotal reports of cancer patients in their final hours" who experience "an improved sense of well-being" following "cessation of fluid therapy with reductions in secretions and coughing, nausea and vomiting, urination, pulmonary and peripheral edema, and diarrhea."
Even proponents of deliberate starvation admit that these anecdotal reports cannot be considered conclusive. Byock writes, "while the heightened probability of a gentle passing by PRNH [Patient Refusal of Nutrition and Hydration] is intriguing, at present, it remains speculative."
>From Sullivan's review, however, we can see the context that hospice workers may be referring to when they talk about "discomfort" in the dying. If your loved one is not a cancer patient in his final hours, the "discomfort" hospice workers have been schooled to expect might very well be hunger! Of course, the individual hospice worker that you are talking to might not know this. She might have been trained in the belief that "food and fluids" cause "discomfort" but not know what sort of "discomfort"!
There is much room for misunderstanding and confusion. Nowhere is the language barrier more of a problem than when hospice proponents speak of weighing the risks and benefits of removing hydration and nutrition. It is extremely surprising to see what they include and do not include in their risk-benefit analysis!
It is not, as a family might think, that they weigh the possibility of "discomfort" from the feeding process versus the risk of an early death. Not at all. Dr. Ira Byock, a proponent of removing nutrition and hydration, writes, "These clinical reviews, case reports and new research data lend credence to the clinical impression that, among the terminally ill, the risks of uncorrected malnutrition and dehydration are few. (In this circumstance, death is not properly regarded as a risk, since it is a principal expected outcome.)"
In other words, the fact that death will be caused by the removal of food and fluids doesn't count at all for Dr. Byock's risk-benefit analysis!
Another peculiarity of the risk-benefit analysis described by Dr. Byock is that he counts as a "benefit" the possibility of avoiding a different type of death. He writes, "In the process of informing and obtaining consent from patients — and, perhaps especially, in discussions with the legal surrogate(s) of an incapacitated patient — it must be remembered that the decision to prevent malnutrition or dehydration is a de facto decision to have the person die of something else. Stated another way, the euvolemic [well-hydrated], nutritionally supported patient may live longer, but is probably more likely to die from acute systemic infection, from acute respiratory failure, from acute cerebral or myocardial ischemia or from abrupt blood loss."
In other words, when Dr. Byock weighs the risks of "discomfort" from feeding a patient, he is not specifically talking about the sensations caused by the feeding process, as a family might well think. Instead, he is adding up all the possible pains the person might experience later on in his life if he survives!
Informed Consent Requires Clear Language
The sad truth is that these arguments as ridiculously slanted as they are are worded in such a way as to sound ordinary, and they are very intimidating to religious families. The families, not appreciating the unusual meaning of what they hear, don't quiz the counselor about the exact details of what he means. They dutifully weigh the pain they imagine their relative will suffer against the pain their own consciences will inflict upon them, and they unselfishly choose to endure the pain of conscience rather than make their relative suffer physical pain.
Little do they realize that the counselor is speaking in riddles, and that almost nothing that he says can be understood in the normal manner.
They don't realize that literature on deliberate starvation may be the context for their health care counselor's remarks about "discomfort" and the "dying process."
The concept of patient autonomy is based on informed consent. Informed consent requires clear language. Does the average patient who signs a hospice consent form choosing "palliative rather than curative" treatment understand that this might result in his dying earlier maybe much earlier from starvation and dehydration? Does his family understand this? Would they make a different choice if they understood?
Dr. Olevitch
maolevit@artsci.wustl.edu, is a clinical psychologist and author of Protecting Psychiatric Patients and Others from the Assisted-Suicide Movement: Insights and Strategies (Praeger, 2002).
FLORIDUH VOTER SAYS: TERRI DOES NOT HAVE ANY DISEASE PROCESSES, SHE IS ALERT & AWARE OF HER SURROUNDINGS. SHE WASN'T AFFORDED ANY OF HER RETAINED RIGHTS INCLUDING INFORMED CONSENT.
Even if someone has a disease process, bad hospices do their best to convince the family that starvation and dehydration is preferable to a natural death.
TERRI IS NOT JUST THE SLIPPERY SLOPE. What they've done with her life and are trying to do is a FALL FROM THE HIGHEST PEAK. They seek to exterminate the disabled in their culture of death for the bottom line.
The CEOs of Hospices have related businesses and there's a lot of money to be made from private donations and through Medicaid Fraud. THESE ARE STATE SPONSORED HITS thanks to Judges like Greer and Baird, our 2nd dca and the Florida Supremes.
WHAT WILL THE US SUPREME COURT DO? Will they grant Governor Bush his day in court re: Terri's Law or will JEB be DENIED DUE PROCESS to protect a ward of his state whom he's sworn to protect under his OATH OF OFFICE? Will Judge Greer order something immoral and sinister MUCH SOONER, as in ONE WEEK? FV
Sad but effective manipulation technique. It is abhorrent and disgusting! Believe me, I learned long ago not to necessarily trust the medical staff and their advice. Furthermore, they are frequently far to condescending for my taste. Families should weigh and investigate everything carefully and remember they are advocates for their loved ones!