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The Reluctant Decision Maker
by Paul Chidwick
This is an issue that many times involves the mediation of the hospital chaplain. In the series Bioethics for Clinicians (CMAJ July 15,1996; vol.155 ff) it was noted on several occasions that the beliefs and values inherent in certain cultures and religious traditions can inhibit the participation of patients and family members in the decision making process about their health care. This reluctance was mentioned but given very little elaboration, except by citing reference materials. The following article is an attempt to focus on one particular belief which could account for this lack of participation.
In a society that places such emphasis on personal autonomy, it sometimes comes as a surprise when patients or family members make a concerted effort to avoid taking responsibility for making a decision in a crisis situation. This was not such a problem in the past. There was a time when professional paternalism was the practice of many physicians, and was generally accepted by their patients. It just was not done to question the advice of your physician, and to some extent many people today consider it bad taste to insist on a second opinion. It seems tantamount to a vote of non-confidence.
But things have changed. The general trend now is to emphasize patient participation, the provision of appropriate and adequate information, and above all, to respect the individual’s right to make personal decisions about their health care. But what are we supposed to do when people seem reluctant to engage in this activity?
The situations where this occurs most frequently are when patients or family members are faced with an ethical dilemma. The decision to be made is not a matter of right or wrong, good or bad, moral or immoral, legal or illegal, but rather a dilemma of choices each of which can claim some measure of validity. It is the kind of conflict that arises when a decision needs to be made about providing CPR for a terminally ill patient or someone with an incurable heart disease, or the provision of tube feeding which may also involve the use of restraints and the curtailment of a quality of life. How do we make decisions about what is appropriate and inappropriate treatment, especially when what is appropriate for one may be inappropriate for another?
It is in these kind of circumstances that health care professionals expect some sort of response from the patient or family members. When it is not forthcoming there is the additional dilemma about whether one should forego personal autonomy and allow professional paternalism to carry the day. Who is going to make the decision?
This reluctance can manifest itself in a number of ways. The patient or family member may continue to ask for medical opinions for which there are no answers. They may even invite the professional staff to make the decision for them, or they may postpone the decision until they have consulted other members of the family. This hesitation to decide is sometimes expressed in terms of “What do you think we should do?”, “We only want to do the right thing.”, “We just want God’s will to be done.”
It could be argued that this reluctance is sometimes the result of inadequate medical information, in which case an unwillingness to decide is justified. But there are numerous occasions when people do not want to hear all the medical data, and some will even become extremely annoyed if it is forced upon them. It is as if the more information we provide, the greater degree of personal responsibility we expect from them, something which they are reluctant to accept.
It is difficult to know how to respond to these people unless we have some understanding about what lies behind this reluctance to decide. One very significant motivating factor is their belief about authority. By “authority” I mean that personal confidence or inner power that enables a person to risk taking a position on a matter which has less clarity than one would wish. This is not an attitude which is acquired naturally. It is something which is nurtured through the whole of life. It is also something that can be polarized.
For some people authority is largely externalized, and by others internalized. Those who have internalized authority will have sufficient confidence to take on decision making responsibilities. Those who externalize authority will tend to look beyond themselves for authentication of a decision.
The kind of factors that create this polarization often have their origins in a person’s cultural, philosophical, or religious background. In some religions the standards of morality and the dictates of beliefs systems are clearly prescribed, and presented in a manner that can claim some divine justification. They are to be accepted and not questioned. Furthermore, they are usually accompanied by the threat of some kind of punishment if one deviates from the prescribed norm. These dire consequences may take the form of divine disapproval, or the tacit rejection of family and friends.
If one beliefs that authority has been distributed in a tiered system, then decision making powers depend on where you reside in the system. If you believe that your relationship with a supreme being is one of an unworthy sinner standing before a righteous judge, then it behoves you to be cautious about decision making. If you believe that the church, the faith group, the extended family, or the societal group in which one belongs can claim a higher degree of respect than that of an individual person, then one will seek the authoritative position of the community over and above any individual opinion.
There are other religions or cultural groups that have given permission for individuals to determine their own moral standards, and to engage in the personal interpretation of a particular belief system. This has had the effect of encouraging the internalization of authority and creating the opposite polarity. These people can be very demanding and present their own problems, but at least they indicate a willingness to take on responsibility for the decision at hand.
How should we respond to people who have been polarized to look for external support. For the reluctant decision maker it is essential that the polarity be recognized by the health care team. It is not something that can be ignored, nor should be challenged with a statement to change one’s way of thinking. In a crisis situation it is not the time for theological or philosophical debate. If an external authority is required then something has to be provided. It may be that the professional caregiver should take a more authoritative stance. It is possible that the corporate authority which some people seek from the extended family should be given more respect and credibility. It could also be suggested that the patient or family member seek advice from a religious leader, or someone above them in the tiered system, in order to provide the external authentication needed. Very simply, their inability (or dare I say their lack of capacity) should be recognized as a serious impediment to the decision making process.
This may look like a return to paternalism. I think not. If authoritative advice is given in a sensitive manner it can often be received with gratitude and relief. It is interesting that the CPR Policy at Montreal General Hospital (approved May 28,1993), which allows a physician to write a DNR Order by simply informing family members that CPR is not, in this particular instance, an appropriate course of action, has not resulted in vociferous objections or copious law suits, but rather with acceptance that would indicate a sense of gratitude for removing a very burdensome decision.
If physicians feel uncomfortable about taking such an authoritative approach it is probably not due to a deep concern to preserve the principle of personal autonomy, but rather to avoid a potential law suit. But it is questionable how far this fear can be justified, especially when such an approach is only meant to relieve a burden that family members seem unable to carry themselves.
When family members conclude the decision making process by saying “Do everything!” and insist that no medical stone remain unturned, it usually indicates that they are experiencing a state of powerlessness. Far too often the temptation is to acquiesce, and as a result, provide a regimen of treatment that is not appropriate. Such acquiescence ignores an unresolved problem. If, on the other hand, greater efforts were made to address the root cause of this powerlessness we might save ourselves and our clients the indignity of futile treatments. This is not to advocate a heavy-handed approach, but rather one that appreciates the belief systems that family members bring into the decision making process. Simply to recognize the existence of these beliefs can go a long way to alleviate their sense of helplessness, and hopefully open a dialogue that will result in a more constructive solution.
Paul Chidwick is a former Chaplain of Humber River Regional Hospital and presently the Editor of OMNI.
Posted by editor on September 30, 2003 10:42 AM