Thursday, January 26, 2006

Further Thoughts on Ethics in Health Care

I have written already about physician-assisted suicide and what the General Convention has said on the subject. I also want to commend again "Faithful Living Faithful Dying" as a valuable resource for theological and ethical reflection on care at the end of life.

I must admit, though, that I have some further thoughts about ethical reflection in health care. There is a distinct consensus, even a culture, that shapes how ethics are discussed and decisions made in health care. I have worked within that culture for some time. I appreciate its strengths; but I also have some questions.

First, let me review briefly the clinical consensus and where it came from. The 20th century had several scandals involving medical practice - or, more accurately, gross malpractice. Two were especially notorious. The first was the series of experiments on human subjects by physicians under the Nazi regime. Prisoners were compelled to suffer horribly under the justification of the greater good of new medical knowledge. The second was the Tuskegee Experiment, intended to learn the natural history of syphilis. For decades African American men in Alabama with syphilis were deceived about their condition. They were followed but not treated while syphilis took its toll.

In reaction to these atrocities the international medical community came together to articulate principles of appropriate protection of human subjects for research. Statements such as the Declaration of Helsinki and the Belmont Report laid out principles to protect human dignity. These principles were then applied to therapeutic practice, incorporating and transcending (or at least clarifying) the principles of the Hippocratic Oath, and its most familiar phrase, “First, do no harm.” The most common articulation of these principles is referred to as the Georgetown Mantra. Under the Mantra, respect for persons is expressed in the following principles:

1. Autonomy – that is, the independent autonomy of the patient or of the patient’s representative.
2. Beneficence - to act always in the best interest of the patient.
3. Non-maleficence - to do no harm to the patient.
4. Justice – that is, what is the impact of this action on the larger community?

Other principles have been derived from these, including truth-telling, that benefits should outweigh risks, and that life should have dignity and quality. However, the Georgetown Mantra has become the pervasive basis for ethical discussion in health care.

And within the Georgetown Mantra, the principle of Autonomy has risen to a primacy of sorts. In the American context, this isn’t really a surprise. We are quite defensive of our individual rights. This has been supported in law in the authorization of the various forms of Advance Directive and Living Will documents. These exist to give instruction from patients as to how to be cared for, and as to who can make decisions for the patient, when the patient cannot decide for himself or herself. Even at the bedside, and in the absence of a document, the first question to the patient’s family isn’t, “What do you think is right?” but, “Has the patient ever said what he or she wanted?”

The Georgetown Mantra is important and helpful in ethical discussion and ethical decision making. The principle of Autonomy certainly seeks to protect the integrity of the individual, even when the individual is not capable of protecting his or her own integrity. At the same time, I find myself at times struggling with its apparent primacy. Certainly, it seems to get all of us – both family and health care professionals – off the hook: “It’s not necessarily what I want, but it is what the patient wants.”

On the other hand, it can’t take us off the hook entirely. John Donne wrote famously, “No man is an island, entire of itself; every man is a piece of the continent, a part of the main.” While that image may be too big, too global for us to embrace, we can appreciate what we have learned and articulated in Family Systems theory: we all live in a web of relationships, however shallow or strained they may be. When we stand at the bedside of a patient who lacks capacity to make decisions, and who is not expected to recover to an acceptable quality of life, we stand almost always with others who will be affected by the death of this patient. Even though we die individually, we do not die without having affecting someone else. (You can trust my observation that the most apparently isolated patient strongly affects those who care for that patient, who are acutely aware of the emotional importance of the care they provide.) We may die individually, but none of us dies alone, without impacting someone else.

This is more acutely true of the Christian. We act as individuals, but we understand ourselves to be integrally part of something larger. We are all part of the Body of Christ, and individually members of it. We have an effect on others by action or inaction, by presence or absence. As we are integrally part of families, we are integrally part of this larger community – and sometimes more integrated into it. After all, we do not choose our families, at least in the first instance; but at some point we claim our part of the Body of Christ as an act of will, at least as often as we affirm our faith in the Creed.

In light of these thoughts, can I stand so absolutely on my own autonomy in making decisions about my medical care? Must I not at least elevate Justice on par with Autonomy? I personally think I should. Now, like many things I should do, I realize I will sometimes fail. I may not know what is just. I may not be able to see what is just through my own pain or fear. I may be able to make justice equal with autonomy for myself, and unable to do so for those I love best. I am conscious of Miroslav Volf’s response in “Exclusion and Embrace” to a hard question about his beliefs on reconciliation: “No, I cannot – but as a follower of Christ I think I should be able to.”

And so I think I should do in considering ethics in health care. I am not an island, either. How, then, can I think like one? It is not clear how I should do this when the shoe is on the other foot: when I am the chaplain, and neither patient nor family member. Still, I believe the Gospel calls me to see the patient in context; to advocate for those affected by the patient’s illness and death; and to recognize the interconnectedness of patient and family and community in the process of making moral decisions in health care.

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