Bioethics Discussion Blog: Should Patient Autonomy End and Something Else Begin in End-of-Life Decision-Making?

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Sunday, May 21, 2006

Should Patient Autonomy End and Something Else Begin in End-of-Life Decision-Making?

There is discussion in the ethics community about whether patient autonomy (the right for patients to make their own medical decisions) should apply to end-of-life decisions or decisions when the patient has no capacity to make personal medical decisions; This issue is discussed in an article “The End of Autonomy” by Robert A. Burt in the Hastings Center Special Report November-December 2005 “Improving End of Life Care: Why Has It Been So Difficult?”

Prior to the Karen Quinlan Supreme Court decision in 1976 end-of-life medical decisions were essentially made by physicians and paternalistically suggested to patients or their families. Since then there has been an ethical,legal and social consensus that patients themselves have a right and should make their own decisions regarding all medical issues but particularly including those decisions which influence the course when end-of-life is nearing. However, repeated studies and surveys suggest that most patients don’t create advance directives telling the healthcare workers what they, autonomously, want to be done if they are critically ill and the chance for recovery is poor or the results of therapy will be a quality of life that the patient will not want to tolerate. There often is confusion about what the patient would have wanted and disagreement between family members and between family and doctors. Yet decisions have to be made and if not by the patient or paternalistically by the physician then what alternatives are there for end-of-life decision-making?

Robert Burt,in his article, suggests 3 additional possibilities:

1) No one should be authorized to engage in conduct that directly, purposefully, and unambiguously inflicts death, whether on another person or oneself.

2) Decisions that indirectly lead to death should be acted upon only after a consensus is reached among many people. No single individual should be socially authorized to exercise exclusive control over decisions that might lead to death, whether that individual is the dying person, the attending physician or a family member acting as a healthcare proxy.

3) As much as possible, end-of-life care should not depend on explicit decisions made at the bedside of a specific, dying person but rather should be implicitly dictated by system-wide decisions about available resources, personnel, and institutional settings—that is, by setting up definite pathways that implicitly guide and even control caretaking decisions in individual cases.


Should we do away with patient autonomy in end-of-life decision-making and return to physician paternalistic decisions, avoid any action that inflicts death, have the decision made not by the patient or any one person but by a consensus by many people or, finally, a system-wide decision applied to all patients and based not on the patient’s personal interest but on economics,strategy and logistics of the system itself? Or do you have another idea? ..Maurice.

4 Comments:

At Monday, May 22, 2006 12:28:00 PM, Anonymous Lindsay said...

1 - No person can end their own life? I guess I feel that each individual person is responsible for his own life and body, and if he should decide that his pain is too great, he should have the right and legal ability to gently end his own life. I would like to see instutional respect and compassion and professional counseling for people who have expressed a desire to end their own suffering. Termination of life affects more than just the dying person, of course, but it is that person's life to choose as he will. How can we say that our philosophy of the sanctity of life is more important and urgent than the great and overwhelming suffering of the individual?

 
At Monday, May 22, 2006 3:45:00 PM, Blogger Maurice Bernstein, M.D. said...

Lindsay, this was just one of several alternative proposals by the author on handling the end-of-life issues since it appears that patient autonomy is not workable in that situation. This is because either the patient has never written an autonomous advance directive in the past or has never specifally communicated that decision to another person or because the patient is presently unconscious and cannot make a decision or there is disagreement by the family of what the patient had previously stated or that a court has appointed a surrogate to make a decision and the decision of the surrogate is not accptable by the family. The most recent example of all this confusion was the Terri Schiavo case.So what other suggestion could you support? ..Maurice.

 
At Monday, May 22, 2006 6:30:00 PM, Anonymous Moof said...

If I were to choose between the systems you've mentioned, I would go with a blend of the following: return to physician paternalistic decisions, avoid any action that inflicts death, have the decision made not by the patient or any one person but by a consensus by many people ...

However, a system-wide decision applied according to economics, etc. ... no. The same shoe does not fit every foot. Such a system would be a mockery of our very humanity.

If I were dying and unable to communicate, I would want my physician to make a decision according to what he understands about medicine - and about my condition. If he weren't sure, then I would hope that he would get other opinions. But a medical person is who I would want making that decision for me - not the members of my family. They know their emotions, ... a physician knows his medicine.

If he knows it's pointless to go through a lot of meaningless efforts, he should say so, and be kind enough to use whatever means necessary to ameliorate further suffering - short of causing death - which will come in its own time.

I'm sure that this system hasn't always worked perfectly ... but that's part of the human condition - we all make mistakes.

When a person is unable to communicate, the treatment and care the person should or should not receive is a medical issue, and should be made, in my opinion, by medical people - since they're the only ones who have any idea of what's actually happening.

 
At Monday, September 25, 2006 10:26:00 AM, Anonymous Anonymous said...

"...since they're the only ones who have any idea of what's actually happening."

No, physicians (what about the nurses who probably know the patient more intimately than the physician), can only intellectualize what is happening. Or, they can recite statistics regarding a particular course of treatments and calculate mortality considering the prevailing health, condition, and co-morbidities.

A physician should present the facts, as they are known, and the relative odds of this or that happening. To abrogate the will and decision making of the patient exhibits a calamatous degree of arrogance. The life is that of the patient alone. Only he knows what he's feelings and, if compelling lucid, should be able to choose or refuse care.

Mark

 

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