Decision-Making in Clinical Ethics
by Robert D. Orr, MD, CM
Today's Christian Doctor - Spring 2001
This article was adapted from Medical Ethics: A Primer for Students, by Robert D. Orr, MD, CM, and Fred Chay, ThM, DMin.
Mrs. Richards is a sixty-two-year-old woman who collapsed suddenly two hours ago and has been brought to the ER where a CT scan shows a large hemorrhage in the midbrain and brainstem. She is unresponsive and requires ventilatory assistance. Her physicians must decide whether to use comfort measures, expecting that she will die, or to use aggressive measures to try to prevent her death. How do they make this critical decision? Does it make a difference if she is a Christian? Does it make a difference if her professional caregivers are Christians?
Physicians and dentists make dozens of decisions each day: Should I order an imaging study? If so, do I need an MRI or will a plain X ray suffice? Which antibiotic should I prescribe? Should I get a consultation? Most of these can be classified as clinical decisions—those which are based primarily on a doctor’s clinical knowledge and skills and the facts. But many are also ethical decisions—those that involve not only facts, but also values. Such value-laden decisions often lead to dilemmas and ethical uncertainty. For example, the decisions related to the questions just stated take on ethical dimensions if the patient has no insurance and must pay for the imaging study or antibiotic from a fixed or low income.
Learning how to make clinical decisions in the healthcare professions is an art, learned slowly by instruction, observation and experience. Learning how to make ethical decisions is also an art, requiring knowledge of both secular and Christian perspectives. The art of decision making in clinical ethics involves matters of both process and content. In examining the case of Mrs. Richards, we will focus primarily on matters of process, mentioning matters of content as needed.
Some authors focus on the content of decision making in clinical ethics. One of the most widely used methods of ethical decision making delineates four content areas, indicating there are four sets of factors to be considered in making decisions in clinical ethics: medical indications, patient preferences, quality of life and contextual features.1 The authors structure the process of their method by assembling these factors into a four-quadrant matrix, proposing that medical indications and patient preferences are the primary factors. Accordingly, most decisions should be made using only these two. But when there is a poor prognosis (medical indications) and there is no way to know what the patient would want (patient preferences), then it is permissible to drop below the horizontal line and consider quality of life and contextual features.
A Five-Step Process
Other authors focus instead on the process of decision making in clinical ethics, describing up to fourteen steps. We will use a simplified five-step process based on the acronym CARER—clarify, analyze, resolve, enact and reassess the decision. We will weave content into these five steps, and will discuss some of the differences which may arise when using this process in a secular and a Christian setting. Of the four sets of content outlined by Jonsen, et al, the first—medical indications—are primarily factual, so we will consider this content area under "Clarify." The other three sets—patient preferences, quality of life and contextual features—are all value-laden and will be considered in our process under "Analyze."
In the case of Mrs. Richards, the physicians are asking the value-laden question of whether to use life-sustaining treatment or comfort care.
The first step is to recognize that there is an ethics question and to clearly put that question into words. Next, the clinicians must gather the appropriate facts. Good ethics begins with good facts, and it’s impossible to make good value decisions if the facts on which the decision is based are in error. The pertinent facts include the patient’s baseline intellectual and functional capacity, her diagnosis, the nature of the disease—acute and reversible, chronic and progressive or fatal—and the prognosis. The final fact is to determine what is medically feasible. What are the physiologically plausible therapeutic options? That is: "What can be done?" as opposed to "What should be done?"
The ER physician learns the following facts: Mrs. Richards lived independently and was quite healthy except for obesity and a history of untreated hypertension. The consulting neurosurgeon says the intracranial bleed is not amenable to surgery, and she may die quickly from progressive bleeding, or with aggressive life-sustaining treatment she might survive, but would be in a severely disabled condition permanently.
While the prognosis is listed here under facts, a prognosis is more a guess than a fact. Sometimes the educated guess of an experienced clinician can seem to be almost factual, but often his or her training or experience biases an individual clinician’s prognostic guess. When prognosis is considered fact, the guess can become self-fulfilling. For example, a doctor may think that a particular patient will not do well, so the doctor does not recommend aggressive treatment and the patient does not survive. Thus, the doctor concludes that he or she was right. But what if the prognosis had been a bit more optimistic and it had been decided to use life-sustaining treatment for a while. Maybe the patient would have improved.
The final clarification is to decide who are the appropriate players in the decision. Is it just the patient and the doctor? Are there other clinicians who have either a clinical or a moral stake? Does the patient rely on others? If the patient is unable to participate, who is the appropriate surrogate?
Mrs. Richards cannot participate in any treatment decisions now, and it is not possible to restore her decision-making capacity. The ER physician is admitting her to the care of an ICU team (attending physician, resident and intern) who will use the same neurosurgical consultant who saw her in the ER. The admitting intern learns that Mrs. Richards has three children—a son (Randy) and daughter (Stacy) who live nearby and have already arrived in the ICU, and a second daughter (Linda) who lives several hundred miles away and will arrive in a few hours.
The process of clarification is pretty much the same whether or not the patient/surrogate or the clinicians are Christians. An individual’s religious beliefs, spiritual condition and eternal future will have little bearing on outlining the ethics question, the medical facts or the players in the decision to be made. There are a few principles and rules which have bearing here, but they are nearly identical in the professional arena. A basic principle of medical ethics is "non-maleficence"—the duty to do no harm. This fundamental principle includes such specific items as truth-telling (the patient has a right to know the facts) and non-exploitation (the professional has the obligation to be trustworthy, to maintain patient confidence and to not sexually exploit the patient).
After clarifying the facts, the next step in our process of decision making is to analyze the values important to that decision. Let us look briefly at the three important content areas which must be considered in this step of the process.
What does the patient want to have done? What are her values, her goals, her specific wishes? Part of the job of the primary clinician is to determine if she has been adequately informed of the pertinent facts. In addition, we must ensure that it is her own decision; that she is not being coerced by other people (family, physician, nurse, friends) or by circumstances (finances).
If the patient is unable to speak for herself, the clinician’s job is to try to determine what she would choose if she were able. A surrogate must be chosen to speak for her and encouraged to make the choice she would make—not the choice the surrogate would make for himself or for the patient. Making such a substituted judgment can sometimes be complicated and difficult.
Mrs. Richards cannot speak for herself. She has left no written instructions about what she would want done or whom she would trust to make her decisions. Both Randy and Stacy are close to their mother and seem to have a good understanding of her values. Their father died in an industrial accident when they were very young. Their mother remarried and subsequently had their stepsister, Linda. The second husband is also dead, probably from alcohol abuse. Randy and Stacy are convinced that the patient would choose comfort care in this circumstance, but they are suspicious that when Linda arrives she will (inappropriately, in their judgment) insist on full life-support.
A patient’s preferences are greatly influenced by her personal and religious values. From a secular perspective, the most important value here is the fundamental ethical principle of patient autonomy. Whatever the patient wants is what should be done, perhaps within some rather wide professional boundaries, e.g., "futile" treatments are not provided even if the patient requests them.
From a Christian perspective, personal autonomy is important, but not the highest good, as is often assumed in secular discussions. Christians do believe in free will and in human dominion, but we also have faith in a sovereign God. We believe that He has a purpose for each of us, that we are to be obedient to our understanding of His will and we are to be good stewards of our bodies and our resources because they are gifts, in trust, from Him. Thus the choices available to the believer may be different from those of the non-believer. Sometimes those choices may be more limited, sometimes broader.
Randy and Stacy report that Mrs. Richards is a devout Christian who, since the death of her second husband, has devoted her time to teaching the 4th, 5th, and 6th grade Sunday school class and to discipling young mothers in her small Baptist church. She has said in the past that when she can no longer participate in these ministries, she is anxious to be "absent from the body and present with the Lord."
Quality of Life
The second major content area that must be considered in the analysis of an ethical dilemma is the patient’s quality of life. Because of the very personal and subjective nature of this concept, it is anything but easy to evaluate.
From a secular perspective, a focus on quality of life means that professionals must fully understand the ethical principle of beneficence—doing what is good for the patient. It requires a combination of competence—emphasized in medicine since the time of Hippocrates—and compassion—introduced by the "Good Samaritan" teaching of Jesus.
From a Christian perspective, the concept of quality of life is sometimes interpreted as a selfish extension of personal autonomy. Some Christians are quite fearful of the concept and insist that it be discounted in favor of the biblical principle of sanctity of life. In addition, Christians are taught in Scripture that we are to be content in our circumstances and that there may sometimes be value in suffering. Though this idea is often scoffed at in secular discussions of quality of life, our calling as Christian professionals is to recognize the "image of God" in all patients and to be of service, regardless of the quality of their lives.
[Ed. Note: The concepts of quality of life, sanctity of life and meritorious suffering are considered in greater detail in a subsequent chapter of the book.]
In discussion of treatment goals, Randy and Stacy volunteer that their mother has a strong opposition to abortion and euthanasia, based on her belief in the sanctity of human life. In addition, her frequent visits to a friend handicapped by a severe stroke underline her dedication to the support of life with lesser quality. Her devotion to her own ministries and comments about her joyous anticipation of heaven suggest that her own quality of life is important to her.
The final content area to be considered is the influence of context. This includes such matters as the impact of the impending decision on family members, professionals and others. It also includes cultural beliefs, legal constraints, financial considerations and issues of institutional or public policy.
From a secular perspective, this diverse set of factors is all-important but rarely determinative. That is, though they cannot be ignored, we should rarely rely solely upon them as a basis for a decision. One additional principle of secular ethics is justice. It is very important that professionals recognize the need to treat like patients alike.
Christians need to assess this group of factors, but how we weigh them may differ. For example, abortion is legally permissible, but a Christian who upholds the sanctity of human life will feel constrained from participating in most, if not all, intentional terminations of prenatal life.
[Ed. Note: The matters of context and the differences between secular and Christian perspectives are discussed more fully in a subsequent chapter of the book.]
In addition to the authority of law and public policy, the Christian looks to Scripture for guidance and mandates. The Bible teaches us about justice, but also about mercy and grace. The believer’s perspective includes more than this life. All of our deliberations should be cast in a matrix of eternal hope.
Randy and Stacy favor the use of comfort measures with the immediate withdrawal of aggressive life-support (especially the ventilator). During their discussion with the attending physician, Stacy mentions that her mother has no medical insurance.
Once these required elements for ethical analysis are clearly understood, it is time to move toward a decision. It is the physician’s responsibility to make a recommendation about which therapeutic options are within the boundaries of acceptable medical practice and which are outside those boundaries. In addition, he or she may make one or more recommendations about what seems most appropriate in a particular case, given the facts and values that the doctor has learned.
Some younger physicians—out of fear of being perceived as paternalistic—fail in their responsibility to make a specific recommendation. Before the social upheaval of the 1960s elevated patient involvement and patient autonomy, physicians approached their patients paternalistically. Doctors determined, "This is what is wrong, and this is what should be done," without adequately involving the patient or surrogate in decisions. Doctors had the patient’s best interest at heart, but sometimes what the physician chose was clearly contrary to what the patient actually wanted. Rarely can we justify this authoritarian stance, but when medical facts and experience indicate that one treatment is clearly preferable, it is equally wrong for the doctor to fail to make a recommendation.
As patients, surrogates and professionals navigate the road to a decision in an ethical dilemma, it is not uncommon to encounter conflict, or at least differences of opinion. Sometimes the differences are between professionals—the consultant wants to be aggressive, the primary physician wants to focus on comfort. Sometimes it’s between patient/family and professional—the physician wants to limit treatment, but the family insists that "everything" be done. Other times it’s between different family members—two children want to limit treatment, but one wants to continue aggressive therapy.
In the professional realm, a third party such as a nurse, social worker, patient representative or chaplain often mediates such conflicts. Sometimes individuals consult with an ethics committee for answers. At other times they seek ethics consultation, not to resolve conflict, but to assist with defining the ethically permissible options, given the known facts and values. For authority or guidance, the ethics consultant or committee may refer to professional codes of ethics, opinions of others trained in ethics or law, institutional policy, state laws or judicial precedents.
Christian patients and professionals are not always able to avoid such conflicts, and should not hesitate to use the above-mentioned mechanisms of conflict resolution when appropriate. But the Christian patient or professional has additional help. He or she can share difficult decisions with brothers and sisters in Christ, seek counsel from a pastor or priest, seek the guidance of the Holy Spirit through prayer and seek specific guidance through reading, understanding and applying principles from Scripture.
The neurosurgeon has recommended to the attending ICU physician that Mrs. Richards be continued on her current support for at least 72 hours to see if the bleeding will stop now that her blood pressure has been lowered. He would then suggest an attempt at weaning from the ventilator. Randy and Stacy have requested that support be discontinued the next morning, just 24 hours after the stroke. The ICU physician is concerned that their inclination toward comfort care may be influenced by financial worries and their request to implement this decision quickly may be to avoid confrontation with Linda, from whom they seem estranged. He requests an ethics consultation.
After reviewing the chart, the ethics consultant talks with the ICU team and the neurosurgeon, then meets with Randy and Stacy. He learns about significant family estrangement since Linda has moved away, begun drinking and using drugs and started living with a man who was still married to another woman. He concurs that the choice made by Randy and Stacy seems consistent with their mother’s values, and he becomes convinced that their concern is not primarily finances, but her well-being. He convinces them that they should wait for Linda’s arrival before making any irreversible decisions.
The consultant meets alone with Linda soon after she arrives. She seems overwrought with despair, but insists that she knew her mother best. She seems certain that her mother would want "everything done" to survive because of her strong religious beliefs. The consultant recommends that all three adult children meet the next morning with the attending ICU physician and the neurosurgeon. Though the others have agreed to meet, Linda sees no need, insisting that the decision is clear.
Based on the tenets of secular clinical ethics, the consultant has done his job. However, because he recognizes that the patient was a devout Christian, and because he shares similar values, he goes a step further.
The consultant asks Linda if it would be all right if he prays before they finish their discussion. In spite of her pacing, wailing and weeping, she readily agrees. He briefly gives thanks for the patient’s life and ministry and for Linda’s safe arrival, and he prays for God’s wisdom and peace for all concerned. And "the peace that passes all understanding" descends on Linda. She stops crying and agrees to the meeting in the morning.
It is a brief and noncontentious meeting. All three children agree to comfort care, and the two physicians agree that, given the poor prognosis and the patient’s values, this is medically acceptable.
Once the facts and values are clarified, boundaries are defined and differences of opinion are resolved, it is time to make a decision, usually by consensus, rarely by vote.
Once a decision is made, it is appropriate to make plans and establish the time to enact that decision.
Shortly after the management meeting, with all three children present and with the chaplain praying quietly, the resident detaches the ventilator supporting the weak respiratory efforts of Mrs. Richards, and removes the endotracheal tube. To everyone’s surprise, Linda then climbs over the bed rail, wraps her arms around her mother and whispers softly in her ear for the five or six minutes before her respiration ceases and her heart stops.
It seems obvious and rather straightforward that once a decision is made about an ethical dilemma, it is time to enact that decision. And it usually is quite straightforward. Occasionally, however, a consensus is reached with which one or more of the professionals involved are still uncomfortable.
Professionals, as well as patients and families, are moral agents. None should feel forced to act in a way that compromises his or her principles of personal or professional ethics. If there is consensus that a family is making an ethically justified decision to limit treatment, but the bedside nurse or the attending physician has scruples about this course of action, they should be relieved of their professional responsibilities as soon as someone else is able to take over. This should be the case whether those scruples are based on professional, personal or religious beliefs. This should be the case in either secular or religious institutions.
Also, when a decision is made to enact a plan of care which limits treatment, it should be done with compassion for patient and family, again in both secular or religious institutions. Beyond this, while some caregivers may wash their hands of the matter and turn away, the Christian healthcare professional should increase his or her palliative care efforts in these situations, should continue to care for the patient until death and should continue to care for the family even after the patient’s death.
This method of decision making for ethical dilemmas sounds like a step-wise process which moves smoothly from clarify, to analyze, to resolve and on to enact. And sometimes this will be the case. Quite frequently, however, the steps may seem to come in a different order. For example, a decision may be imminent when new facts come to light that change the analysis, for example, a written advance directive may be produced which gives different directions. Or the patient may improve enough to participate in decisions, thus trumping the decision of the surrogate.
At all steps and at all times, it is vitally important to keep an open mind and heart. It may be necessary to redo the entire process, or to reenter the flow and sift through the issues a second or a third time. Even after a decision is made and enacted, it is crucial to revisit the issues periodically to see if new information leads to a change in goals or directions. For example, if a decision is made to withhold antibiotics from a patient with advanced dementia who has developed pneumonia, but the infection seems to begin clearing on its own, it may be appropriate to reconsider therapeutic goals and modalities.
Believers—whether patients, families or professionals—can experience a great sense of peace from seeking God’s guidance and direction. And we can experience ongoing peace in continued prayer and fellowship, supporting each other through these difficult times.
We have discussed the content (medical indications, patient preferences, quality of life, contextual features) of ethical decisions and recommended a process (clarify, assess, resolve, enact, reassess). Both content and process have to be considered within a matrix of ethical principles. From a secular perspective, the principles of this matrix include:
- non-maleficence (most closely aligned with medical indications)
- autonomy (related to patient preferences)
- beneficence (related to quality of life)
- justice (part of the contextual features)
- fidelity–the professional’s faithfulness to the individual patient–which pervades all areas of content and should be part of each step of the process.
These five principles are also recognized and honored when medical ethics are considered from a Christian perspective. In addition, the Christian has many other scriptural principles that come into play. Some are closely aligned with one of the four content areas; others have more diffuse application. These secular and scriptural principles are added to the figure below (click image to enlarge) to establish the matrix for decision making.
1. Jonsen, Seigler, and Winslade. Clinical Ethics, 4th ed [McGraw-Hill: 1998].