When we discuss the ethics of end of life decision making our focus is commonly on how we can best respect the autonomy of the patient and how we should weigh the benefits and burdens of a treatment for the patient when that person is unable to make his or her own decisions and has not previously made decisions about the treatment that may be done. Very commonly families are involved in the decision-making process for those who are dying. Our focus in medical ethics is commonly on identifying the proper decision-makers and helping them to make well-informed decisions. A recent article by Kim Beernaert et al. in the Journal of Clinical Oncology (abstract available online) reminds us that it is not just the patient who is affected by the end of life decision making process.
They studied young adults who had lost a parent as a result of cancer 6 to 9 years earlier, at ages 13 to 16 years. They found that those who reported little trust in the health care provided to their dying parent had an increased risk for self-destructive behavior and other psychological problems such as depression. While it is not necessary that this relationship was a causal one, the findings suggest that a better understanding of how medical decisions were being made for their parent might reduce some of the adverse effects of the parent’s death on teenage children.
It is proper for the person who is dying to be the primary focus in making medical decisions for that person, but this study reminds us that we are very seldom caring for an isolated individual. Most of the people that we care for are part of a network of family and others who are all impacted not only by what happens to the person that we are treating, but also by the decision making process used to determine that treatment. While the autonomy and privacy of those we are caring for is important, part of the ethical care of our patients involves good communication with family members who are impacted by the patient’s illness. This study reminds us that the children of a person who is dying are included in those who are impacted by the way we make decisions for that person. This is a good thing for all of us who are involved in end of life care to remember.