Posted on 01/12/2005 11:39:38 AM PST by nickcarraway
In a recent article in this space, “Feeding Tube Decisions: The Real Ballot Box,” 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 is a clinical psychologist and author of Protecting Psychiatric Patients and Others from the Assisted-Suicide Movement: Insights and Strategies (Praeger, 2002).
Thanks, nick. This is an important article for people to read.
Terri ping! I realize that this is not strictly about Terri, but it is a good article about the misconceptions about feeding tubes and hospice lingo.
If anyone would like to be on or off my Terri ping list, please let me know here or by FReepmail.
marking
Thank God for hospice care.
Wait a second...I reread this article...I don't know if I like the tone of it.
Hear hear. My 85 year old mother just died on a hospice. No one tried to influence our decision, which my mother fully participated in. All the folks there were caring, concerned, and in general were a God-send through the crisis.
By the grace of God, she started to swallow a few days ago and now can drink V8 juice & carbo pudding. Our family is praying she can will continue to eat and hopefully get her speech back...
I have had some okay experiences with hospices, but I have some problems with them too. What I especially don't like is that they "act caring," but are misleading the relatives about what is going on. Now, they believe in what they are doing, but that's not really an excuse. I am not saying they aren't caring people, but that isn't really an excuse for what they do. The most recent Hospice even prescribed a drug in a way it's not approved for, which is illegal. Now they may not have realized that, but they have an obligation to.
Bump. That is great to hear. Too often doctors and others are ready to give up on the elderly, when they can live well longer.
Thanks for the ping!
I don't like the tone either. I have had some contact with hospice and they were great. They did not interfere with decisions about food or fluids.
Praise God! What a great story!!
But she did wake up, she did start talking, walking, eating, and spent 8 more years with us.
People do "graduate" from hospice, and the hospice workers love it when it happens.
I agree that it is disingenuous to say it is humane to cut off hydration.
God bless you, and be with you, as you grieve your wife's death.
I have heard that last moments can be lucid, so to receive 24 hours was truly a blessing for you and your family!
My mother, who turns 80 on Thursday, had an apparent stroke on or before Nov. 15, 2004. She could not swallow. A feeding tube was inserted at my request on Nov. 18. Thereafter, she resumed eating by mouth and has done so since about Nov. 23. She never turns down a meal. She still has the feeding tube for backup in case she stops eating again. The tube is rinsed with water (and some medication) twice a day. This is to make sure that it does not stop up. But it is not now being used for feeding. Her tube is very, very simple to operate. Her mind is fairly good after the apparent stroke. No, her quality of life will not permit her to get out of bed and walk, but we are managing quite nicely thus far. The feeding tube is not an extraordinary measure to maintain life in her case. Many people do not understand the concept of a feeding tube.
Theodore R.
I couldn't agree more, Theodore! I will add your mother to my prayer list!
How did this situation arise? Hospice chairman of the board at the time, George Felos, is the attorney representing Michael Schiavo's efforts to kill Terri. When Michael Schiavo contacted Felos, George had just the place to kill Terri: his very own hospice! So, he stepped down from the board, temporarily of course, until the legal battle to kill Terri is over. After the legal battle, we're sure good old right-to-kill-patients-advocate George will be right back on the board. George (Felos) is a student of Ira Byock, MD (a well known hospice physician) who advocates adding "aid in dying" (through terminal sedation) to the mix of "services" provided by hospices.
Dr. Ira Byock, long time palliative care physician and advocate for improved end-of-life care, and a past president of the American Academy of Hospice and Palliative Medicine, provides written resources and referrals to organizations, web sites and books to empower persons with life threatening illness and their families to live fully.
The following is from George Soros' Project On Death In America site before it began to get too much attention from research on Terri's case and was taken down. Luckily, I copied parts of it to a CD.
Exerpt: (located below midpage)
Ira Byock, M.D.
Barbara K. Spring, M.D.
As a hospice physician and medical director, Dr. Ira Byock is only too aware of the difference between a "good" death and a "bad" death, and the fact that the latter far outnumber the former. But instead of working only with the medical profession to reverse this equation, he and gerontologist Dr. Barbara K. Spring set out to engage an entire Montana town in examining the dying process and making it better. The Missoula Demonstration Project: The Quality of Life's End is the most ambitious effort of its kind in the United States. Modeled after a famous long-term heart disease study which collected data on an entire community, the 15-year Missoula Demonstration Project aims not only to improve the quality of life's end in Missoula, but to stimulate other efforts throughout the country. Organized in 1996, and overseen by an international advisory committee, the project is engaged in several studies to understand people's experiences, attitudes, values, customs and concerns about death. By looking at 250 families which experienced a death within a one-year period, for instance, and by gathering data in all health-care settings that treat or care for dying people, researchers hope to create, as Byock puts it, an "intensive, high-definition picture of dying, death and bereavement in Missoula." "Our approach," says Barbara Spring, "is to focus on what people seem to worry about the most-pain, the length of the dying process, isolation, and other things that make them miserable."
Project on Death in America Transforming the Culture of Dying
PDIA will no longer link properly.
In November 1994, George Soros delivered a speech on the questions raised by the culture of dying in America. His speech, reproduced here, elaborated much of the origins and aims of the Open Society Institute's Project on Death in America.
Excerpts:
Third, we must increase the availability of hospice services for terminally ill patients removing restrictions on admittance and enhancing reimbursement regulations. We should consider laws that permit next of kin to decide to forego life sustaining medical interventions even when a patients wishes are not known. The government may have to help family members financially so that they can take care of dying persons at home by the least expensive means. These are only a few of the approaches to transforming the culture of dying that our project will be exploring in the months to come.
More:
This brings me to that hotly debated subject, physician-assisted suicide and euthanasia. This is the one aspect of dying that is talked about everywhere -- on television, in public forums, in newspaper headlines, and serious journal articles. Voters in Oregon just approved a law that makes it the first state to lift the prohibition against physician-assisted suicide.
As the son of a mother who was member of the Hemlock Society, and as a reader of Plato's Phaedra, I cannot but approve. But I must emphasize that I am speaking in my personal capacity and not on behalf of the Board of the Project on Death in America. There are members of the Board who take a different position and the Board as a whole wants to steer clear of the issue because it feels it has plenty to do before opening that Pandoras box. Instead of getting embroiled in the debate on physician-assisted suicide and euthanasia, they want to support the training of health care professionals, enabling them to provide humane, compassionate care to the dying, including improved physician-patient communication, patient-centered care, better physician judgment on withdrawing or withholding care, and familiarity with the principles and practices of palliative care.
Open Society Institute Grants, Scholarships and Fellowships
Rallying Points - A Last Acts Initiative
PARTNERSHIP FOR CARING: AMERICA'S VOICES FOR THE DYING
"George Soros' Agenda for Drug Legalization, Death, and Welfare" Excellent Norwegian article from 1997 emphasizing the diabolical influence of Soros on Society. The author sounds an alarm regarding the Project on Death in America.
Thank you, as a former and perhaps future hospice nurse, I discharged many "End Stage" cardiac and renal patients by rearranging their medications. Morphine is Such an Emotionally charged drug to prescribe that you have to be in Hospice to be able to receive it (Almost). Before the new wonder drugs Morphine was the gold standard for heart and lung diseases. It is still a great drug for chronic heart and pulmonary disease if tolerated. It can prolong and dramatically improve the quality of life for people in these situations.
Those Terri threads from last year were so chock full of great information! I'm so glad you kept some of that info on CD! I only meant that because Terri is not mentioned specifically in the article, that it may not be about her completely, but it definitely pertains to her situation and the confusing language that hospice engages in.
The article makes a great point about informed consent and the need to be clear and exact with words. What we laymen think of when they make references to discomfort, and what hospice means by discomfort can be two very different things. It's another reason why I think living wills and advance directives can be very dangerous.
The whole George Soros business always makes me sick to my stomach!
Terri ping to post 20 for a nice compilation of information that was discussed on Terri threads last year.
If anyone would like to be added to or removed from my Terri ping list, please let me know here or by Freepmail.
Thank you for the Ping to this Information, Ohioan!
It's the what is 'is' thing with the words.
I really think it depends upon the affiliation that a hospice has. I have had experience with two different hospices and both were positive. Just lucky there were no Soros mentored caregivers, I guess.
bump this
That's a good thing to do, if you're one of the minority who prefer it. Some people think they would prefer death over living with a disability, but once they find out what that actually means, they change their minds. So before signing anything away your rights, I would advise anyone to do some research, and find out just what they're asking for.
My prayers are with your Grandmother. May she recover, and go on to share the love of her family for a good while longer.
I think the problem with many hospice workers is that they are not in the business of healing patients. They are in the business of making patients' deaths as comfortable as possible, and helping loved ones accept the death. Some of them just don't know when or how to make an exception.
Your Mom's in my prayers. You say the feeding tube was put in at your request. I wonder if you hadn't asked for it, if they would have given it to her. If you hadn't learned so much about this from Terri, would you have known to ask? Until about a year and a half ago, when I first heard about Terri, I had no idea the attitude some people have against feeding tubes. I find it especially shocking that some in the medical profession are opposed to allowing their patients to have them. I just took it for granted that if a patient needed a feeding tube, the doctor would put one in, unless the patient gave specific orders not to. That's what the law requires. If doctors took the hypocratic oath seriously, you wouldn't need such a law.
BykrBayb wrote: You say the feeding tube was put in at your request. I wonder if you hadn't asked for it, if they would have given it to her.
I don't know. Her doctor has urged me to put her in a nursing home, saying her care would be "too difficult" for me to administer. I told the doctor that I would try to tend to her so long as she is lucid, and because she was dehydrating on Nov. 15, 2004, I asked for the feeding tube. The tube was put in a few days later. She had not eaten for a full week and drank almost no water but received hydration by veins once in the hospital. After four to six days of liquid nutrition, she started eating again by mouth and has done so since. This was quite a surprise to her doctor. He then said that he would keep the tube intact for future use, which he said would be certain. She has Parkinson's and other ailments, and I think she had a stroke prior to Nov. 15.
BB wrote: If you hadn't learned so much about this from Terri, would you have known to ask?
TR's reply: Absolutely NOT!!!!
BB wrote; Until about a year and a half ago, when I first heard about Terri, I had no idea the attitude some people have against feeding tubes.
TR's reply: "Me too!" I thought such tubes were complicated and difficult to operate. I have found that they are easy to use. Some operate continuously. Mother's tube is used only to keep it open -- with water and medication -- twice daily.
BB wrote: I find it especially shocking that some in the medical profession are opposed to allowing their patients to have them. I just took it for granted that if a patient needed a feeding tube, the doctor would put one in, unless the patient gave specific orders not to. That's what the law requires. If doctors took the hypocratic oath seriously, you wouldn't need such a law.
TR's reply: I agree. Her brother, my uncle, had a feeding tube installed in 1996, but he lived only a month after the tube was inserted. I thought that his seemed more complicated than Mother's device does. It is implanted a few inches above the navel. The feeding tube is no more intrusive than a heart pacemaker, as I can tell, and much safer than a pacemaker at that.
Many people, ALL IN GOOD HEALTH it seems, are quick to denounce "artificial" devices, such as feeding tubes. Of course if those people needed such "artificial" devices, you can bet that they would be lobbying Congress to find them free access to the "lifesaver."
Thanks for your concern. Mother is weak but stable at this time. She turned 80 on Thursday.
So before signing anything away your rights, I would advise anyone to do some research, and find out just what they're asking for.
I was twice urged by hospital officials to sign a "Do Not Resusitate" (called DNR) order. And I have resisted this for fear that such instructions would be misused. It's highly likely that if or when Mother has another hospital stay, the personnel would not do much for her if there is a DNR order on the wall behind her.
"Do Not Resuscitate" means just what it says. If you sign one of those, they'll just let her die. They might try to tell you it would only be used in certain situations that any reasonable person would agree with. Blah, blah, blah. The reality is, they would honor that DNR in a heart beat (no pun intended.) Otherwise, why would they be pushing you to sign it?
Also, I am under the impression that once cannot "take back" a DNR order in the same facility. Is that true, or does it depend on the facility? Obviously, it seems that if one had a DNR order for one hospital, he could say he doesn't want one in another hospital.
I think you have the legal right to rescind a DNR order, but how that actually works in practice is anybody's guess.
BTTT
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