ALZHEIMER'S DISEASE: The Case Against Feeding
By: C. L. Junkerman, M.D.
Fred J., age 70, is a former draftsman for an architectural firm. Confusion about where he was and forgetfulness began many years ago. He has been in a long-term care facility for the past five years and has had progressive deterioration to the point where he does not recognize his wife or son. He is awake and reacts to pain stimulus but does not speak. His wife fed him one meal a day until recently when he began to choke and aspirate. A swallowing study shows neurogenic discoordination.
There is no advance directive and there had been no previous discussion with his family about his wishes in this circumstance.
The medical team and the family are faced with a true dilemma. They can authorize placement of a feeding tube but they are not sure that Fred would want that. They wonder if they are causing Fred to suffer and starve if they do not agree to the tube and agree to feed only small amounts of foods he can tolerate and seems to want (though his true desires are almost impossible to ascertain).
Two relatively recent changes in advanced societies have fueled public interest in this issue: The increase in chronic diseases in an aging population - 70 percent of whose members now face prolonged and progressive disability as a terminal event; and the increase in the number of life-prolonging technologies which the public knows may be applied inappropriately, thus perpetuating a life that the individual does not value.
Historical Perspective of Artificial Feeding
Through the centuries the only care possible was supportive with attempts to feed, but the patient usually died of aspiration or dehydration (or starvation if supplied with enough fluid).
Over the past 30 years feeding tubes have become smaller and more pliable. They were used at first for temporary feeding of postoperative patients who could not eat in order to tide them over the crisis.
The use of tubes for artificial feeding was then extended to any patient who could not eat, regardless of whether the underlying condition was temporary or not. Long-term care facilities feared regulatory sanction if patients who could not eat an adequate diet did not have a nasogastric (NG) or gastronomy (G) in place. But recently the use of tubes in patients who have untreatable, often progressive diseases has been questioned.
Ethical Aspects of Artificial Feeding (Both Fluid and Nutrition)
In order to properly assess this issue, we must consider the ethical concept of proportionality, that is, the benefits and the burdens of the procedure as considered from the viewpoint of the patient.
What are the benefits of a feeding tube for Fred?
It will keep him alive; however, one has to make sure that he wishes to be kept alive.
Many believe that the tube will prevent hunger and thirst.
What are the Burdens of a Feeding Tube for Fred?
The possible need to restrain his hands to keep him from pulling the tube out (in 50-70 percent of such patients) will increase his discomfort. Ethicist and geriatrician Timothy Quill (1959) has noted that restraints "violate the basic tenets of humane care" and should be used only when tube feeding is needed to support a patient through an acute illness, but not when used to support a patient with severe irreversible illness who has little prospect of ever recovering from the disease or returning to nutritional independence.
The tube will probably not decrease the chance of aspiration and pneumonia. In one series, 57 percent of tube fed patients hid aspiration and pneumonia. There will not be a decrease in the chance of bed sores, and a tube may cause additional problems such as bowel obstruction, peritonitis and gastrointestinal bleeding. The mortality from G tube use is substantial. In one series there was a 15 percent mortality rate in the hospital immediately after tube placement and a 63 percent mortality rate at the end of one year.
Comment from Physician Ethicists Hodges and Tolle (1994)
"It is not obligatory to continue a therapy that is not accomplishing any of the goals of medicine if the following conditions apply:
The patient has irreversible loss of cognitive function.
No goal other than sustaining organic life (non-sentient) is accomplished by the therapy.
The patient has not previously expressed preferences about being sustained in an "organic life."
Will Fred Suffer from Foregoing Artificial Feeding?
Hospice experience tells us that many terminal patients suffer from fluid overload and pulmonary edema if given properly calculated amounts of water. They will often voluntarily stop eating and drinking because they feel better.
When Food and Fluid are Stopped:
There is an increase in opiod (morphine-like substances) in the body which has an effect upon the brain which produces analgesia and euphoria.
Hypernatremia and hypercalcemia are present in 50 percent of patients producing a sedative effect on the brain.
The increase in ketones (waste products from fat metabolism) turns off the appetite mechanism in the brain so that after 36 hours hunger is not a problem (this lack of discomfort is confirmed by healthy individuals who are on a voluntary hunger strike for political reasons).
Systemic dehydration induces little pain or discomfort provided the mouth is kept moist. Dryness of mouth is usually the only complaint; this can be alleviated with ice chips without producing enough fluid intake to change the course of events significantly (Sullivan 1993)
Legal Aspects of Foregoing Fluid and Nutrition
Is the provision of fluid and nutrition through a tube medical treatment or is it an expression of care and compassion important enough to make it different and obligatory? This is a controversial issue.
The Missouri Supreme Court in Cruzan disagreed that nutrition and hydration were medical treatments stating that "common sense tells us that food and water do not treat an illness, they maintain life." However, the U.S. Supreme Court in the Cruzan case in a dictum from Justice Sandra Day O'Connor disagreed:
"Artificial feeding cannot readily be distinguished from other forms of medical treatment. The techniques used to pass food and water into the patient's alimentary tract all involve some decree of intrusion and restraint. Requiring a competent adult to endure such procedures against her will burdens the patient's liberty, dignity and freedom to determine the course of her own treatment."
Withholding vs. Withdrawing
There is no legal or ethical difference between withholding a feeding tube or withdrawing one that is in place. There is, however, a real psychological difference. It seems easier to withhold a treatment than to stop one already in place. In addition, there is a fairly widespread misconception that treatment once started cannot be discontinued - this is simply not true.
Importance of Advance Directives
A patient's right to limit treatment is based on respect for patient autonomy and patient liberty rights.It is a strong right recognized by the courts and means that a patient can refuse or withdraw any form of treatment despite the knowledge that such withdrawal will surely hasten death. The right can be exercised by the decisional patient or by the now non-decisional patient who has left clear directives.
Power of Attorney for Health Care (PAHC)
This legal document is a way for a decisional person to appoint a trusted person as his/her "health care agent" or "proxy" to make health care decisions in the event principal becomes incapacitated.
Advantages of PAHC
The PAHC allows patients to express preferences, goals, and values.
The physician has both a written document and a person with whom to consult with an agent, a trusted and knowledgeble proxy who may be able to provide a "substituted judgment" (an estimate of how the patient might have chosen when decisional).
If the agent cannot give a "substituted judgment", the agent and physician together use the "best interests" standard (how a reasonable person might choose in consideration of the beneficiary/burden concept of proportionality) in order to make decisions.
The written document relieves the patient's fear of spending the last days of life attached to a piece of equipment which is supportive of life but not restorative of mind or function.
An individual can add specific instructions for an agent such as the following (adapted from Sissela Bok):
"I value a full life more than a long life. If my suffering is intense and irreversible, or if I have lost the ability to interact with others and have no reasonable hope of regaining this ability even though I have no terminal illness, I do not want to have my life prolonged. I would then ask not to be subjected to surgery or to resuscitation procedures, or to intensive care services or to other life prolonging measures, including the administration of antibiotics or blood products or artificial nutrition and hydration."
What Can We Do for The Freds of this World?
We must address the diagnosis and prognosis honestly and squarely early in the course of the disease. Alzheimer's disease is usually rather slow in progression, allowing time for this discussion if the patient and family are willing to face reality.
The patient's values and wishes should be ascertained and understood - which is when a PAHC comes in handy.
Furthermore, we need to make sure that the patient understands the benefits and burdens of a feeding tube through thorough and honest discussion.
Professor Terrence Ackerman (1996)
"In constructing sophisticated moral and legal arguments, parties to the debate have made rather facile assumptions about the medical consequences of tube feeding. Tube feeding is represented as an unobtrusive, safe and effective medical intervention for patients unable to eat by mouth. Although these assumptions permit a head-on philosophical clash between the advocates for the sanctity of life and quality of life views, they fail to reflect the clinical reality of tube feeding.
The interlocutors have debated vigorously the relative priority of respect for life and quality of life and quality of life in tube feeding decisions. The more basic moral questions concern the treatment itself: whether its burdens are justified by its intended benefits and whether the risk/benefit ratio is more favorable than the option of conservative management."
Ethicist David Thomasma (1991)
David Thomasma refers to tube feeding in advanced demented patients as "the undue prolongation of life by an irresponsible use of the medical technology that is potentially cruel and abusive. Maybe it is time that care/case managers, families, patients, caregivers, and clinicians really reassess how we make wide spread use of technology that should probably be used in more limited circumstances.
Dr. Junkerman is an internist who is Professor Emeritus of Medicine at the Medical College of Wisconsin in Milwaukee. He has chaired or served on numerous Ethics Committees including the Commission on Ethics of the State Medical Society of Wisconsin. Dr. Junkerman lectures widely to MCW students, residents, and faculty as well as to local hospital staffs in Wisconsin and northern Illinois on various medical ethical issues.
He is, with colleague David Schiedermayer, author of the text "Practical Ethics for Students, Interns and Residents."
Ackerman, Terrence. The MoralImplications of Medical Uncertainty: Tube Feeding Demented Patients. JAGS 1996; 44:1265-1267
Hodges, Marian O.; Tolle, SusanW. Tube-Feeding Decisions in the Elderly. Clinics in Geriatric Medicine 1944; 10:475-488
Quill, Timothy E. Utilization of Nasogastric Feeding Tubes in a Group of Chronically Ill Elderly Patients in the Community Hospital.Arch Intern Med 1989; 149:1937
Sullivan RJ. Accepting DeathWithout Artificial Nutrition or Hydration. J Gen Int. Med. 1993; 8:220-223. Thomasma, David. Arch Int Med. 1991; 151:925-928