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Response to Thick and Thin (to read Nancy's article, please scroll down)
The case study in all three variations strikes me as odd. It may be summarized as follows:
A patient refuses a mode of pain-control medication delivery that the oncologist advocates. Unable to persuade the patient, the doctor enlists the help of the ethics committee.
Only the first variation cites the oncologist's stated concern: "the patient is not making a fully informed decision." The second variation provides some explanation for this in stating that the patient and oncologist have a language barrier. It also adds the background that the patient has religious reasons for not wanting the pump. In the third variation the reason for refusal is apparently the patient's vanity.
If the language barrier were really the problem, presumably the oncologist could call in a professional medical interpreter in order to translate the conversation. This suggests that language is not the problem. Similarly, the oncologist probably is not an expert in the patient's religious practice, so I doubt whether the oncologist thinks the patient is misinformed about his own religion. The same can be said about the third variation's concern for personal appearance. Surely she is not misinformed about her desire to look a certain way in the company of her friends.
What is left, then, for the ethics committee to consider is the power relationship between physician and patient. Does the patient have the authority to refuse a palliative treatment? Can a patient legitimately choose pain over medication? What is at stake for the oncologist? Why must s/he protect the patient from pain? Is absence of pain the highest value? Or is it simply that the oncologist needs to control his/her patients and have the final word on every intervention? Why was this case brought before the ethics committee?
I believe it is vitally important to protect the patient's right to say "No." Without it, the patient has no rights at all.
Rev. Dr. Paul D. Brassey, Chaplain
Spiritual Care Department
Empire Health Services
Spokane, WA
Thick and Thin
A recently published survey of 600 US hospitals reported that chaplains are among the five professions consistently involved in ethics consultations. In hospitals where ethics consultations are performed by members of more than one profession, 94 percent of all consultations include physicians; 91 percent include nurses; 71 percent include social workers; 70 percent include chaplains, and 61 percent include administrators. Other professions, such as attorneys, or lay persons, are involved much less frequently.
This study is well worth finding and reading.[1] It provides a snapshot of how ethics consultations work and how well those involved in them are prepared for this responsibility. It also calls attention to the troubling frequency of “practice variation” in how similar cases are handled and resolved between different hospitals and even within the same hospital. In health care, reducing practice variation is a good thing. Standardizing infection control measures and medication labeling, replacing handwritten orders with computerized orders, and providing patients with written information about their treatment regimens keeps patients safer and makes the delivery of care more efficient and effective.
Reducing practice variation is also a goal of health care teams, including ad hoc teams such as ethics consultation services. Cases with similar clinical features tend to involve similar ethical obligations. For example, all patients or surrogates considering a particular treatment decision should receive the same information, and the same opportunities for discussion, so they can all make informed decisions. However, these clinical similarities may be masked by the presence of personal details that can seem to “explain” a case. These details can include information about patient’s religious beliefs – and also professionals’ own beliefs concerning these beliefs. Here’s an example:
A 71-year-old patient with advanced colon cancer has been offered the option of receiving pain medication through a portable infusion pump as an alternative to oral analgesics that have not been well tolerated. The patient has refused the infusion pump, stating that the device would be a barrier to participation in activities that are deeply meaningful. The patient’s oncologist is concerned that the patient is not making a fully informed decision, and calls for an ethics consult.
That’s a fairly “thin” description. It includes the clinical facts, but little about the patient and the nature of those “deeply meaningful” activities. So here’s the same case with “thicker” description:
Mr. A, a 71-year-old man with advanced colon cancer, has been offered the option of receiving pain medication through a portable infusion pump as an alternative to oral analgesics that have not been well tolerated. Mr. A. has refused the infusion pump, stating that he did not believe that the device was compatible with his religious tradition’s customs concerning garments that can be worn during worship services. Mr. A’s first language is not English; his son usually serves as his interpreter. He has a large family, and several family members, including his wife and eldest son, are involved in his care.
But what if the same ethics consultation service was asked to consult on this case, too?
Ms. A, a 71-year-old woman with advanced colon cancer, has been offered the option of receiving pain medication through a portable infusion pump as an alternative to oral analgesics that have not been well tolerated. Ms. A. has refused the infusion pump, stating that she was not comfortable wearing the device to the weekly meeting of her book group. Ms. A’s first language is English. She is widowed and lives alone. Her sister is involved in her care.
Are these the “same” case, or different cases? How can this ethics consultation service – let’s imagine it consists of two physicians, two nurses, a chaplain, a social worker, and a risk manager – discern the common features of these cases and the common ethical obligations that may underlie them? How should they discuss the meaning and relevance of the distinctive features in each case? What, specifically, can the chaplain contribute to the analysis of each case and to the comparison of these cases? And what kinds of additional expertise may be needed, but may not be present on this team?
This is an interactive column, and I welcome your analysis and recommendations concerning these cases. You may also wish to use them, and the survey cited below, in your own department, ethics consultation service, or ethics committee.
[1] Fox, Ellen, Myers, Sarah, and Pearlman Robert A. (2007), “Ethics Consultation in United States Hospitals: A National Survey,” American Journal of Bioethics, 7 (2): 13-25.
Nancy Berlinger is Deputy Director and Research Associate at The Hastings Center. Her research interests focus on clinical ethics and include end of life care; ethics in health care chaplaincy; conscientious objection and moral distress in health care; and patient safety and the resolution of medical harm. Her broader interests include bioethics issues in cancer care, narrative ethics, and medical humanities.
As Deputy Director, she manages the Center’s organizational capacity-building initiative, Bioethics and the Public Interest, which has received major support from the Ford Foundation.
Berlinger is the author of After Harm: Medical Error and the Ethics of Forgiveness
(Johns Hopkins, 2005), which will be released in paperback in fall 2007. She serves on the ethics research group of the Joint Commission, the ethics faculty of the American Society of Healthcare Risk Managers (ASHRM), the bioethics committees at Montefiore Medical Center, Bronx, New York and at Richmond of New York, and the editorial board of Medical Ethics Advisor
. She is a frequent presenter at grand rounds and other ethics education programs for health care professionals. She volunteers on the Chaplaincy Service at Memorial Sloan-Kettering Cancer Center in New York City.
She is a graduate of Smith College and holds the Ph.D. in English Literature from the University of Glasgow and the M.Div. in Christian Ethics from Union Theological Seminary.
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