Guilt and Regret in Prolonged Illness

By Kenneth J. Doka, PhD, Hospice Foundation of America

When death follows a long illness, grief can be evident in feelings of guilt and regret that may arise.

During the course of a long illness, there are many questions to decide. Should we do this course of chemotherapy? Should we go for more treatments? Are we at a point that hospice care would be helpful? After the death, we may review those decisions, constantly rethinking them, asking, "Did I do what was best?"

Marla wonders about such things. Her husband, George, was ill for a long time with cancer. In the end, he decided to forego a last treatment of chemotherapy. Marla questions continually whether his decision was correct. She also wonders why they were so late in summoning hospice. Once they came, he seemed to be more comfortable. Marla regrets that she did not call hospice earlier.

Caregiving is very difficult. It is difficult for family and friends; it is even tough for the person who is receiving care. Once independent, he or she is now faced with the humiliating position of having others assist with the most intimate tasks. In such situations, anger easily flares, tempers can be lost, and people can say things that they later regret. And again, after the death, these memories can haunt us.

Reviewing all these events is part of the grieving process. But, we also need to acknowledge that this is "Monday Mourning Quarterbacking." Things always look different in hindsight, removed from all the pressures that led us to act the way we did.

Acknowledging this fact is the first step in dealing with these feelings. But other things may be helpful as well. If these issues are really troubling, it may be helpful to talk them over with a counselor or in a support group. Reviewing the illness and reminding ourselves of all the situations that led us to act the way we did can reassure us that faced with the same situations, with similar information and choices, we would be unlikely to act differently. Exploring our decisions and behaviors with others who understand can reassure us of the human limits to our power and patience.

If the feeling of guilt is strong there may be other ways to help. Sometimes writing to the person who died or talking to an empty chair at the cemetery can give us needed opportunities to ask, to receive, and to offer forgiveness. Our own rituals and beliefs can be paths to that forgiveness as well.All of these actions may affirm a critical point as we struggle with grief. Under all the stress of grief, illness and caregiving, we did, after all, the best we could.

By Kenneth Doka. Kenneth J. Doka, PhD, MDiv, is Senior Consultant to Hospice Foundation of America and Professor of Gerontology at the College of New Rochelle in New York.