Treatment Decisions on Behalf of Incompetent Patients

Two categories of incompetent patients §Persistent Vegetative State l “Personhood” may be called into question l Unclear if they have interests §Almost all others l Clearly are persons l Clearly have interests of some sort

A spectrum of patients §Competent patient, chooses for self §Incompetent, clear advance directive §Incompetent, clearly stated wishes to family §Incompetent, family knows general values §Incompetent, values unknown

Questions §How far down the spectrum does it make sense to speak of maximizing respect for patient autonomy? §At what point should we decide that autonomy irrelevant and must decide on other grounds? §Are “best interests” those grounds?

Substituted judgment §Based on strong desire to respect autonomy §Decide as person would choose for self §Take current state into account as “fact” in making choice §Thought experiment: “If she could magically be competent again long enough to explain her current status to her, what would she choose?”

Saikewicz, MA, 1977 §67 years old, mental age of 3 §Developed leukemia §Chemo could add ~3-6 mo at high risk §Decided not to provide chemo and allow to die with comfort care §Court: This is what J. S. would want if he could be rational and yet understand himself as a retarded individual

Saikewicz: Criticism §Substituted judgment formulation stretches respect for autonomy out of recognition §Decision not to give chemo was justifiable §Better formulation: ratio of burdens to benefits given patient’s experience as severely mentally retarded

From Saikewicz to Conroy §“Subjective standard” of best interests: I choose for myself §“Objective standard” of best interests: others choose for me based on clearly observable signs of suffering or lack of suffering

The fear of “quality of life” §Need to distinguish: §“Your ongoing life is of unacceptable quality to you based on your values” §“Your ongoing life is of unacceptable quality to society based on society’s values” §“Slippery slope” between first and second approach?

The Conroy approach §Patient unable to choose and personal values poorly known §Great fear that treatment will be withdrawn prematurely based on “social” quality of life §But realize that fear may occasionally lead to great suffering due to overly aggressive treatment §Demand strong evidence of suffering to stop

Is there an alternative approach? §Arras, Rhoden §Admit that substituted judgment may be a myth and often “best interests” are indeterminate §Principle of family privacy: allow one’s family or other loved ones to make choice if no clear advance directive; burden of proof on others to dispute or overturn

Role of family §My family should choose for me because they are the ones most likely to know my values and choose exactly what I would have chosen §My family should choose for me because they are my family and there is no one more fitting to make choices for me

A thought experiment §Who would you want to make choices for you-- §Your family and/or a close friend? §Or the “psychic stranger” whom you never met but who has track record of guessing with 100% accuracy what you would have chosen in any circumstance?

Arguments against §Families may be abusive or neglectful §Families may choose based on what they want and not on what is good for the patient l “I can’t let him go just yet” l “Son from San Diego”-- acting out of guilt

Arguments for §Rare for family to be abusive or neglectful §Law can handle the rare cases §Family emotions can be resolved through sensitive counseling §If family disqualified, who is likely to make better decisions?

Demented Elderly Patient §When competent, expressed strong desire not to be kept alive if severely demented §Is now in demented state §Has no memory of past life §Seems to take joy in simple pleasures of present existence and no evidence of pain or suffering

Demented Elderly Patient §Dresser & Robertson: treat according to present best interests (so favor life prolonging treatment) §Rhoden: treat according to wishes when competent (so favor refusal of life prolonging treatment) §Which counts most as respect for persons?

What makes you the same person? §Continuity of memory with past “selves” §Same human relationships §Inhabiting the same body §Having the same soul

Demented Elderly Patient §Can be argued that this patient is a different person §Has no memory continuity with old person §Has different values and preferences §Feels no indignity in a state which old person would have abhorred §Derives pleasure from present state

How to show most respect? §Dresser & Robertson: Refuse to end life of Person #2 at the say-so of Person #1 §Rhoden: Refuse to keep the body of Person #1 imprisoned in a state which Person #1 said was utterly undignified, forcing others to have final memories of Person #1 as Person #2 (which Person #1 most wanted to avoid)