The Impact on Outcomes

An Introduction to Doing Medical Ethics
Michael A. Gillette, Ph.D.

The following case study which was first presented at the beginning of this chapter is meant as an illustration of how the outlined practical approach to medical ethics can be employed. This is based on the five steps which instruct us to Review, Respond, Reduce, Recast, and Resolve. I have chosen a general case in medical ethics in order to avoid giving the impression that this procedure can only be used in a specific subset of cases in developmental disabilities. The process is useful for all clinical ethics situations.

Review the background information:

Mr. C is a 15 year old resident of a long term care facility with profound mental retardation and numerous medical complications. He is non-ambulatory and suffers from severe scoliosis.

Mr. C is responsive to verbal cues and is cognizant of pain. He is alert and indicates desires when questioned. There are specific activities, such as watching television, that clearly bring Mr. C pleasure.

Staff at the facility feel that tube feedings are appropriate and that Mr. C will recover from his pneumonia and return to his baseline quality of life if the feedings are provided. Should the facility honor the family's request that g-tube feedings be withheld, refuse to honor the request and seek client transfer, or refuse to honor the request and seek guardianship through the courts so that a gastrostomy will be performed?

Respond by listing arguments:

• Cost Containment (Hospital Reimbursement & Social Resources): Is the fact that continued care for Mr. C is expensive a good reason to withhold treatment?
   
• Futility of Care: If the care being offered would do no good for Mr. C then why continue to provide it?
   
• Quality of Life: Even if the care would work, is Mr. C's life worth living?
   
• Family Authority: Doesn't the family have the right to make these types of choices, period?
   
• Facility Standard of Care: Can the family force the facility to provide care that it feels is sub-standard?
  

Reduce the arguments to those that are most central:

• Eliminate Cost Containment.
  Although this is an important social biomedical ethics issue, it is not an appropriate clinical ethics issue. Our society is not yet ready for physicians to deny care in order to save money and has not yet empowered them to do so. One clear landmark on our moral map is the lack of support for cost-based rationing schemes. Although this may be an unavoidable debate for the future, money should not count - yet.
  
  
• Combine Futility with Quality of Life.
  In this case enteral feeding would work physiologically. Therefore, a judgment of futility would be based on an evaluation of the benefit to be achieved by continued treatment, not on an objective standard of futility. The family must feel that Mr. C's life is not worth salvaging by the offered means when they claim that such care would be futile. This argument becomes a quality of life issue rather than a determination of futility.
  
  
• Eliminate Quality of Life as being redundant.
  The family and the facility disagree about the quality of Mr. C's life. This argument is based on divergent value judgments and is therefore not a question of quality of life, but of whose values prevail. This reasoning reduces the quality argument to one of authority to make decisions for the patient.
  

Recast the conflict based on the central issue:

This step of the procedure requires that we pursue the discussion on the truly central point which is the conflict between family authority and the facility standard of care: Whose judgment should prevail in this case?

Resolve the conflict:

There are some important assumptions to consider in resolving this conflict. First, since families can normally make important medical decisions for their incapacitated loved-ones, the burden of proof initially rests with the facility. The family has the right to make medical decisions, all other things being equal, so it is up to the facility to show that all other things are not equal in this case. Second, although family authority is powerful, its power is not absolute. Family authority does not include the ability to force an individual or facility to fall below its standard of care and it does not permit a family to act negligently or abusively. In order to settle this dispute, it becomes necessary to carefully consider the conflicting claims involved. Unless the facility can reasonably show that the decisions of the family are abusive or negligent toward Mr. C, it is in no position to interfere with that authority.

This does not mean that the family can force the facility to follow their wishes. If the facility is ideologically opposed or medically unequipped to withhold tube feedings and manage the dying process from that point on, it may refuse to do so and demand that the family seek alternate placement in a more appropriate setting (e.g. hospice).

On the other hand, if the facility can show that the family's choice is contrary to what the client would have wanted, or if it can show that the client's quality of life is high enough to constitute a benefit to him, then it may claim that the family is acting negligently and may seek judicial relief in this matter by suing for guardianship. Although we began with five possible arguments in this case, we have successfully reduced that list to one issue. Either the facility must be prepared to show negligence, or it must allow for transfer of the patient.

The particular result generated in this case is not what matters most in this illustration. With minor adjustment to the details of the case, a different answer would be ethically justified. The point in examining this case is one of process, not content.