BY: FR. KEVIN FITZGERALD, SJ, PhD, PhD
In its "Shared Statement of Identity for the Catholic Health Ministry," the Catholic Health Association states, "By our service, we strive to transform hurt into hope." The hurt that people experience from illness and injury can be so overwhelming and complex that it is not always clear how we in Catholic health care might best strive to bring hope to our patients and their loved ones. At times, this lack of clarity can involve uncertainty or disagreement among medical staff and the patient and family regarding what the best care plan should be. To assist with the resolution of such disagreements, most health care institutions in the U.S. offer ethics consultation services to help guide the decision-making process.
At Georgetown University Medical Center’s Edmund D. Pellegrino Center for Clinical Bioethics, we explain our ethics consultation service in this way:
"Making decisions amid all the complexities of modern medicine is not easy. Ethical questions can arise, for instance, when a patient has lost the capacity to make decisions, when it is not clear whether the burdens of a treatment are worth the expected benefits, or when values appear to conflict. The ethics consult is an advisory service that is designed to assist patients, families and all health care professionals in identifying, analyzing and resolving ethical dilemmas."1
Anyone directly involved in the patient’s care — family members or friends, as well as physicians, nurses, social workers, pastoral care staff — can initiate an ethics consultation. The purpose is to employ caring and careful ethical reasoning to clarify the issues that caused the consultation to be requested, and then to facilitate resolution of those issues.
Some ethics questions can be resolved quickly by providing key information, such as what the legal process in a particular state is for selecting the person who will represent the wishes of an incapacitated patient. Many times, however, a meeting needs to be arranged so the ethics consultant can guide the participants in working through ethical issues.
WHEN DIFFERENCES ARISE
In determining a patient’s care plan, sincere differences in evaluation and judgment can arise for various reasons. Providers involved in the case might have different areas of medical expertise, or individuals directly involved in the patient’s care might have different information about the patient’s condition and desires or different sociocultural perspectives toward appropriate treatment options. The purpose of the clinical ethical reasoning process is to provide a reliable and repeatable methodology for addressing such differences and then to align them. The goal is to achieve a consensus — which may include compromises — regarding the best care plan for the patient.
The consultation process should be explained clearly and carefully to the patient and family members, both to inform them of how the process works and to assure them that the medical staff is committed to providing the patient with the best care possible, regardless of the patient’s diagnosis or prognosis. The people involved must agree that they will participate honestly and sincerely in the process. However, family history and dynamics can present myriad issues that threaten to derail an ethics consultation, from feelings of anger or guilt among family members to a deep distrust of medical professionals or a given medical institution. Paramount among these issues are the fear and confusion the patient and family members may have in the face of their difficult medical situation.
Whatever the patient and family concerns may be, it is usually best to identify and address them before, or at the beginning of, the formal consultation. Even in circumstances where a treatment decision needs to be made quickly, spending a few minutes clarifying and calming, as much as possible, any anxieties, disagreements and confusions the patient and family members have can greatly facilitate the ethical reasoning and decision-making processes.
When those directly involved in the patient’s care have gathered for the ethics consultation, the ethicist guiding the process typically follows these steps:
- Identify the ethical issues, concerns and conflicts involved in this case
- Gather and present all the relevant information regarding the patient’s situation, including biomedical, sociocultural, family and personal information
- Identify the treatment options available, always making sure to explain that Catholic facilities are committed to caring for each patient as best they can, even when the patient or family decides upon no treatment
- Present the ethical arguments for and against each option
- Determine which ethically preferable options can be implemented
- Determine the best care plan for the patient. These plans can include "wait and see," or "only do X while more information is gathered so another consultation can be held," or whatever the group decides is best, given the circumstances at hand.
The basic structure of the clinical ethical reasoning process may already be familiar to anyone working in health care in the U.S. Those who have been involved in ethics consultations likely have had times when they felt frustrated with the consultation process, or felt that it failed altogether.
Failures in the ethical reasoning process often result from a fundamental, unresolved problem that hasn’t been brought to the surface adequately, such as underlying assumptions or sociocultural views. Despite everyone agreeing on the facts of the case, and everyone agreeing on the relative merits of the different treatment options, one or more of the key participants comes to a completely different conclusion than the rest of the people involved in the case — and it is not clear why. An impasse results.
Here is a brief example of my own: An unmarried man in his early 30s was dying of metastatic cancer. The medical staff thought that all medically indicated treatments had been tried and that the best course of action was now to move the man to hospice care.
Even after carefully explaining the medical situation to the patient, he kept insisting that other treatments be tried. Convinced that this course of action was both medically and ethically wrong, the oncologist called an ethical consultation.
After briefly speaking with the patient, family and medical staff, I gathered everyone together to review the patient’s care plan. The oncologist gently explained to the patient and family that although a few treatment options had not yet been tried, none of those options would have more than a minuscule chance of producing any benefit, and they likely would have severe side effects. The medical staff emphasized that they would do their best to make the patient comfortable, and the patient likely would be able to interact with family and friends for a while longer, as he desired. The medical staff believed that the best care plan available now was hospice care.
The patient then asked for a few minutes alone with his parents. After those few minutes, the patient asked for everyone to gather again, and he declared that he wanted to try at least one of the treatment options, knowing full well that it would have little chance of providing any medical benefit and a high likelihood of causing significant burden. The medical staff and I were completely at a loss to understand the patient’s decision. It seemed irrational.
I asked him if could speak with him alone. He agreed, and following a long review of the entire consultation, he acknowledged that his decision did not fit the facts and logic of his case. He then told me that he had another goal he wished to achieve in the time he had left. He wanted to do whatever he could to reduce the feelings of guilt he believed his parents were trying to hide from him. He believed they felt they were not doing everything they could to keep him alive for as long as possible.
That’s when I realized that, despite all the staff’s efforts to explain the medical situation thoroughly, the patient and his parents still thought that more aggressive treatment meant more lifespan. Consequently, I asked the patient to come, with his parents, to another meeting with the staff. During that meeting, the patient explained clearly to the staff why he wanted to try more treatment. Then his parents opened up about their own fears and concerns.
This new understanding of what the patient and his parents were thinking and feeling helped the staff explain how choosing more aggressive treatment likely would reduce, not extend, the time remaining for the patient, and during that time, he likely would be less able to interact with his parents.
After many tears from the patient and his parents, and more reassurance from the medical staff, the patient chose to enter hospice, and his parents fully supported his decision.
In retrospect, the problem during the ethics consultation was straightforward and understandable: The patient and his parents had some fears and confusions to face, but they had not been able to express them. The issues remained completely hidden from the medical staff until the patient made his totally discordant decision to pursue a treatment option that provided him little or no benefit and significant risk of harm.
OPEN AND HONEST EXCHANGE
It isn’t unusual for decision-making to break down because of misunderstandings or miscommunications about the role and nature of the health care treatments being offered. Any participant’s undetected or unexpressed strong emotions or desires also can derail decision-making. Such "failures" of the ethics consultation process do not undermine or diminish the value of — and need for — good clinical ethical reasoning. On the contrary, these breakdowns make it clearer how critical it is to go through the process thoroughly and well, making sure to engage all the participants fully, in an open and honest exchange of information, knowledge and goals.
It also is important to note that the clinical ethical reasoning process may result in entirely different treatment decisions for individuals with similar medical diagnoses and prognoses. For example, I was involved in two cases within the same month that focused on elderly individuals. Both patients had been diagnosed with the same kind of cancer, and each now had a terminal prognosis.
The first patient, in consultation with medical staff and family, decided to forgo aggressive treatment and spend what time was left in hospice, surrounded by family and friends. The second patient opted to pursue an aggressive treatment plan in hopes of gaining an additional few days of life so that a grandchild traveling from the other side of the world might have time to reach the bedside and receive one last hug and kiss.
The world of Catholic health care grows increasingly complex each day. Advances in medical technology create treatment options with myriad potential benefits and burdens. In the U.S., we also encounter an increasingly varied patient population representing diverse cultures, all hoping to find care that they are comfortable with and that will bring their loved one back to health.
Amid these challenges, our goal is to find the best care plan for each and every patient. To achieve this goal, we need a robust, yet flexible and humane method for addressing the conflicts in judgment and evaluation that can arise.
The clinical ethical reasoning process is the best method we have for resolving conflicts and identifying the best care plan possible for each patient. It facilitates the integration of our best medical reasoning with our fundamental commitment to care for the patient, and the patient’s family and friends, as best we can.
FR. KEVIN FITZGERALD, SJ, is the Dr. David P. Lauler Chair in Catholic Healthcare Ethics in the Edmund D. Pellegrino Center for Clinical Bioethics, Georgetown University Medical Center, Washington, D.C.
- Georgetown University Medical Center, web page, https://clinicalbioethics.georgetown.edu/consult.
QUESTIONS FOR DISCUSSION
Fr. Kevin FitzGerald, SJ, presents a case for training health care professionals to participate in ethics consultations. Sometimes ethics consultations are the only way patients, their families and the health care team that attends them can come to consensus about the best care plan for the patient.
- What members of your health care team usually participate in ethics consults in your ministry? Do you think there should be more or different people in those discussions?
- How often do you think a lack of information or coordination by professional staff contributes to the confusion and fears of patient and family? Do you have suggestions for how the flow and coordination of information could be improved?
- Fr. FitzGerald suggests that the need for many ethics consults result from unresolved issues among family members. Discuss how a member of an ethics team can respect family dynamics while working toward consensus and resolution.
Copyright © 2017 by the Catholic Health Association of the United States
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