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Ethical Dilemmas 1

Ethical Dilemmas 1

This case concerns a 33 year old male, "John Smith", who has lived for 14 years at a state Intermediate Care Facility having been transferred there from another facility where he contracted Hepatitis B.

John suffers from severe mental retardation secondary to Down Syndrome and is unable to make an informed decision regarding medical care nor complete an advance directive. Four years ago he was diagnosed as having chronic active hepatitis and cirrhosis. Three years ago his gastroenterologist determined that John might have only about another six months to live, and discussion of a DNR (Do Not Resuscitate) order led to the family's request that no CPR be done in the event of an arrest. His family also requested that John receive full medical care including hospitalization should his condition require it. Now, three years later, John is showing significant signs of deterioration. Staff in the 10 person cottage where he lives have noticed that John's level of fatigue has increased. He has recurrent oozing of blood from his gums, which occur daily and sometimes last for a few hours. He has a large inguinal hernia that is inoperable due to his prolonged bleeding time. Recently, he has been experiencing more abdominal pain that requires increasing doses of narcotics to control. Due to the danger of strangulation, John is on massive doses of lactulose to maintain at least three bowel movements per day despite the narcotics. Sometimes he has toileting accidents that are problematic because his stool is often streaked with his Hepatitis B positive blood.

Residential cottage staff, who initially felt they could cope with John, have become very anxious and distressed over the thought of John dying at the institution, particularly if this occurs in the cottage. John is now eligible to enter a skilled care facility if needed. Residential cottage staff believe the time has come for him to make the move.

John's family are against his moving and hope that he can remain where he is now until he either dies or requires acute hospitalization. His sister said that sending John to a nursing home "would be like putting him in his coffin before he is dead."

Cirrhosis can cause any of three major life threatening complications:


  • Major hemorrhage, usually from esophageal varices
  • Peritonitis
  • Encephalopathy, often manifest as confusion and combativeness, followed by coma and death.

Some staff members are afraid to work in the cottage alone with John at night. They are particularly fearful of a massive hemorrhage. Others feel uncomfortable in watching John deteriorate and feel that they cannot provide him with the quality of care he needs. People in the cottage are described as "living under a pall." Staff sense that other residents are being adversely affected by the situation.

The question is "What should we recommend for John?"
What do you think?
Do you think an ICF facility should provide terminal care for certain long-term residents?


Let's see how useful the four principles may be in reaching a conclusion. The four principles are:

Autonomy non-maleficence beneficence justice: Let’s look at autonomy first. The word comes from the Greek "autos" (self) and nomos (rule). Self-rule applied to Greek city states but the modern meaning of the word applies to the individual; meaning that individuals should have the freedom to choose what happens to them. Doctors are obligated to "respect patient autonomy" by providing patients with the information they need to make an informed and uncoerced decision about their care.

Unfortunately for us, when caring for people with developmental disabilities, we’re often unable to employ the principle of autonomy because many of our patients do not have the mental ability to make an informed and (relatively) autonomous decision. Many patients never have been competent and therefore have never expressed an informed opinion on medical care, nor completed and advance directive regarding the use of CPR etc.

When we cannot rely upon the principle of autonomy (on the patient to provide an answer), what do we do? We do two things: We look for an appropriate surrogate decision-maker, and we attempt to establish, in our own minds and in the minds of the team, what would be in the patient's best interests.

When looking for an appropriate family member to act as a surrogate decision-maker, we have to be sure that they have the best interests of the patient in mind. This is where the next principle becomes important, namely, non-maleficence. Non-maleficence is simply the principle that one should do no harm to the patient. We have to be sure that the family or other decision-makers genuinely have the interests of the patient at heart. This does not mean that they agree with us; it's always a temptation to call upon the family member most likely to go along with our recommendations.

The principle of beneficence governs what is meant by the patient's "best interests." The principle of beneficence requires us to further the important and legitimate interests of others, largely by preventing or removing possible harms. Beneficence is at the heart of our professional obligation to the welfare of the patient. It should not be taken to mean doing simply what is "medically" best, since that may not necessarily be what is best for a patient when we look at the whole picture.

The problem here is that we have two different views of what the beneficent approach to John should be.
In the family's opinion, John's best interests would be served by his remaining in the institution that was his home of 14 years; where he was familiar with everyone. Staff argue that John's well-being would best be promoted if he were transferred to a skilled care nursing home. Although they know that there is little that can be done for John medically, they are uncomfortable taking care of his medical needs such as trying to stop his gums from bleeding and trying to keep him in bed when his hernia is swollen. The medical staff are also concerned over John's deterioration at the ICF facility. Hospice nurse claim that most people with cirrhosis do not require a skilled nursing home nor hospitalization.

What light does the principle of justice shine on the question? One of the simplest definitions of justice is Aristotle's "equals must be treated equally, and unequals must be treated unequally;" or, in other words, "like cases should be treated alike." The trouble with the principle of justice is that it is open to interpretation because we have to decide what are the relevant characteristics for equal treatment.

Is it fair, for example, that we should treat residential staff as though they were nursing or medical staff with a professional duty to care for the sick and dying? They are lay people who live in a society that does not deal well with death. Should they be required to go beyond the "call of duty" in the face of genuine discomfort on their part? (One could also ask how caring for John in this special way would alter the mission of the institution and affect the distribution of Medicaid dollars.)

What of the other people who live in the cottage? Is it fair that they should be treated unequally, compared to people living in other cottages, simply for the sake of one person's high needs? We have to weigh their best interests against John's. If their lives are significantly and detrimentally affected by the effect John's illness has upon the cottage, are we not obliged to transfer John to a skilled care nursing home? Or should we expect other residents to make the sacrifice because, one day, they too may be in John's position and request like treatment? (There is a precedent to this case, in that a 45 year old woman was given hospice care at the facility last year. Administrative staff were not comfortable with the precedent at the time, but now feel that we have already gone down the slippery slope and that cottage staff are obligated to care for John, even if they are uncomfortable).

None of the four principles - autonomy, non-maleficence, beneficence or justice, leads us directly to an answer. The situation was resolved for the time-being through a compromise:

  1. John's analgesic regimen was altered to improve pain control.
  2. Additional staff were added to care for John.
  3. Hospice began "education" of staff on death and dying.
  4. Protocols were established for John's admission to the infirmary if residential cottage staff should run into problems.
  5. Family members visited skilled nursing homes to determine which one they would prefer if his needs cannot be met in the ICF facility.
  6. Cottage staff continued meeting regularly to discuss the situation.

There was general agreement that John's best interests are served by maintaining a DNR order since his condition is truly terminal and CPR is only likely to prolong any suffering he may experience.


Prepared By: Dr. Mehyar Al-Khashroum
Edited By: Miss Araz Kahvedjian

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