Developing a Plan: Decision Making Challenges

Considering Patient's Wishes

In such cases the American medical system has stressed the importance of trying to figure out what the patient would have wanted, if he or she had been clear thinking. For many this makes good sense in encouraging decision making to be guided by the wishes of the patient. However, problems can arise.The patient may never have considered the particular situation and decision that is being faced. Or it might be that the patient had expressed some broad opinion, but it is not clear exactly how that opinion applies to the current situation. The opinion might have been fairly clear in its general intention, as in statements like, "I want everything done to keep me alive", or "I never want to go to a nursing home", but such opinions may be limited in their usefulness in certain situations. What if everything reasonable has been tried to keep him or her alive, but the therapies are not working or are having serious side effects? Very few people “want” to go to a nursing home, but what if care at home is not possible and the patient cannot stay indefinitely in the hospital? In such a situation, we advise that the decision maker still be guided by the values and expressed wishes of the patient, but also exercise some judgment in interpreting these in light of the current circumstances. In such situations, getting guidance from clinicians, other family members, or friends may be particularly helpful.

Cultural Aspects

While the American medical and legal system has stressed the importance of trying to figure out what the patient might have wanted if clear thinking, this approach to decision making is still very different from how decisions are made in many other countries and cultures. In many cultures family members feel it is their job to decide what is best for a sick loved-one, based on their roles in the family. It can seem quite strange to some to be asked to make an important decision “as if” they were someone else - the sick loved-one. If this is true for you, this is perfectly normal. Different cultures have different ways of handling such things. What is common to all approaches is to try to figure out what would be best in caring for someone who is sick when that person cannot decide by themselves. If the American approach is difficult for you, we recommend that you talk openly with the clinical team about difficulties you are having. Many Americans have the same problem! It can be very difficult if one feels one is being asked to make a certain decision based on what the patient might have said, especially when your heart is telling you that this is not the best thing for your loved-one.

Patients, especially the elderly and older children, may not be able to make decisions independently, but this does not mean they cannot participate in the decision making process. Patients may lack the ability to make certain complicated decisions, but still be able to make other decisions, such as whether or not they need pain medicine. Determining to what extent such patients can participate is very challenging for both clinicians and families.


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