1. Heffron, Cindy BSN, CHPN

Article Content

Hospice. That is the word some families do not want members of our team to use when we are talking to their loved one. When I became a hospice clinician several years ago, I was surprised by how often team members received this request. I thought that, by now, in the 21st century, the subject of death and dying could be discussed openly and honestly. Unfortunately, America remains a death-denying society to a large extent. Many people are still uncomfortable dealing with end-of-life issues. My belief is that the patient has the right to know the truth. Most patients can sense that they are dying, and they may feel alienated from their families when this truth is not acknowledged. I also know that family members are often just trying to protect their loved ones. The reason they give is that they do not want the dying person to give up hope. What they may not understand is that there are different kinds of hope. Just as hospice means a change in focus from curing to comfort, it can also mean a change in what is hoped for. Instead of hoping to get well, the person can begin to hope for a meaningful ending to this life. The opportunity arises for relationships to grow stronger. When people express their sadness, they are also expressing their love for each other. Dying can be a time of personal growth for everyone involved; especially when emotions can be honestly shared. Although I believe this, I realize that the family dynamics in each case must be considered. Although team members can sometimes guide patients and their families to share with each other, it is not always possible. In some situations, it is a violation of cultural values to tell this type of truth to a patient. As healthcare professionals, we are obligated to be culturally sensitive and to respect the customs and beliefs of each family we meet. Conversely, we have an ethical obligation not to lie to our patients. We should tell the family that, if the patient asks us a direct question about dying, we will answer truthfully as we allow the patient to lead the discussion. The word hospice dates back to the Middle Ages. It referred to a place of shelter for sick or weary travelers on a long journey. At the hospice, these travelers could find rest and comfort. In modern times, hospice care continues to offer comfort for both patients and families as they go on this difficult journey together. Ideally, they will use this journey to find out what they have meant to one another. I am reminded of an Irish proverb: "It is in the shelter of each other that the people live." Most of my patients have found shelter in the love of their families. I have to honor the uniqueness of each of these families, including their style of communication. Even if I never say the word "hospice," I am still practicing hospice philosophy. My presence and support remain the same during my visits to their homes. The words I say are not so important. What matters is being there to listen when they have something to say.

Figure. No caption a... - Click to enlarge in new windowFigure. No caption available.