Grief and Bereavement (cont.)
It is absolutely essential to discuss the medical steps that should and should not be taken as the illness progresses. In the U.S., the most common approach to shared decision-making is discussions between the doctor and the person who is ill -- and, under most circumstances, his or her family. The patient, exercising autonomy, makes the choices about medical care, based on the options that are medically appropriate. Patients from some cultures, however, prefer "family-centered" decision-making, rather than " patient-centered." In the family-centered style of decision-making, medical choices are primarily the province of the family, whose choices "serve the good of the whole family, which includes but is not limited to the patient."
A key factor in end-of-life decision-making is the goal of treatment.
The goal of treatment is either curative, supportive, or comfort care. In a terminal illness, cure is obviously not possible. Early in the illness, it may be appropriate to actively support vital functions to "weather a passing storm." Such support may include use of antibiotics for infection, temporary use of breathing machines, and other interventions.
In the last stages of illness, such steps only prolong dying, and it may be more appropriate to forgo them and to institute aggressive care only to provide comfort and to relieve pain and suffering. These decisions, which most often should be mutually agreed upon by the ill person and the doctor, represent the values and desires of the ill person in light of the medical facts.
- Advance directive: Because not all questions can be anticipated, this is also the time for the ill person to complete an advance directive (if one is not already in force), in which he or she may designate someone to make decisions about health care if the ill person is not capable of doing so.
- Hospice: Another important consideration is the advisability of using the services of a hospice during the last six months of life. Most people who use a hospice report a wonderful experience with the hospice staff and their attention to caring for the "whole person." Yet another advantage of hospices is the counseling available not only to the person who is ill but also to his or her family, both before and after the person's death. This may be of immeasurable assistance in dealing with grief in anticipation of, as well as after, the loss. Hospice services are available not only in actual hospice facilities but also as "home hospice," in which the hospice agency provides care services in the person's home.
- Nothing left unsaid: The period of a terminal illness allows the opportunity for nothing to be left unsaid when death does come. There may be "issues" to be discussed for the first time. There may be expressions of thanks and gratitude that have not before been stated -- in other words, things that should have been talked about but were not.
- The perfect moment: Sometimes, we procrastinate, waiting for just the right moment. In their book Medicine as a Human Experience, Rosen and Riser write of another doctor who had to tell an 8-year-old boy that he was dying of leukemia. They quote her as saying, "Why had I waited so long, making excuses to myself that I needed the perfect moment? There is no such thing as the perfect moment. We make all our moments, and by the truth and love we bring to them, we make them perfect."
- Things to be said: For many of us, at least three things have remained unexpressed for too long a time: I love you, I forgive you, and please forgive me. Although living through the terminal illness of someone we love can be excruciatingly painful, this forced necessity to talk through things -- instead of putting them off -- is one of its blessings.
Medically Reviewed by a Doctor on 11/11/2016
Lynn Barkley Burnett, EdD, MS, LLB