By Margo W. Steinberg, MSW, LCSW
|Reactions to the “H” Word|
|Opportunities for Hopefulness|
Many families are afraid to begin hospice care when a loved one is terminally ill, based on the fear that the patient will give up hope and die even sooner. This is a definite misconception about hospice. As the word H–o-s-p-i-c-e itself shows, there is always Hope in Hospice. It is a matter of recognizing that we may hope for different things as time goes on rather than to assume that all hope will be lost upon beginning hospice care.
Hospice eligibility requires that a patient has a life expectancy of six months or less, based on the physician’s knowledge of the illness’s usual course. However, many patients live longer than six months, often due to the additional nursing and personal care and the emotional and spiritual support that hospice provides to both patient and family. Even when a hospice stay is relatively short, the added resources and support can assist both patient and family to come to terms with the inevitable outcome as well as to provide the best possible patient care and guidance for how to remain hopeful.
Hospice social workers play a key role in this work of keeping hope alive, supporting both patient and family in the process of preparing for a death. The social worker’s role includes addressing financial and legal issues such as advance directives. It can involve accessing community resources or coordinating the caregiving by various family members. It involves dealing with the fear of dying by assuring that comfort can be maintained through the joint efforts of the hospice team and caregivers. Social workers can help families imagine and verbalize on what life might be like in the future. Most importantly, they can offer the appropriate emotional support and encouragement to both patient and family so they can say the important things that need to be said and cherish the time they have left together in a rich and meaningful way.
Patients and families react in many different ways when receiving a terminal diagnosis and the dreaded suggestion that it is now time to bring in hospice. Depending on a variety of factors including the patient’s age, length of illness, current level of well-being, and personality traits, some people may nod in agreement, accept the reality, and resign themselves to going home to die. Others may deny the concept and continue on as they have been or even overcompensate by living life more vibrantly. Perhaps it is fear that causes these responses. Perhaps it is a sudden realization that time is a precious gift. Regardless, no one approach is better than another. They are simply different reactions to a stressful, frightening, and incredibly sad moment in time.
Regardless of how the patient and family approach their situation, there are still many reasons for hopefulness. We can hope for:
- More time than the physician initially suggested
- Chances to go places or do things we’ve always wanted to try but never got around to doing
- Time to express our wishes regarding end-of-life care and funeral arrangements
- Time to say all the things we’ve always been meaning to say but never have actually said
- The chance to explore or confirm a personal spiritual meaning of living and dying
- Opportunities for tell others how important they have been in our lives
- Time to share our hopes and dreams for other members of the family, even if we are not present to see those dreams realized
- More days of feeling good rather than poorly
- Time to simply enjoy being in the presence of our loved ones
- Being comfortable and pain-free
- A peaceful death, surrounded by those we love most
Accepting hospice at the end of life can benefit patients and their families by strengthening the ties that bind them and enriching their abilities to reach out and support each other.
The things we hope for may change radically over the course of a hospice stay, as the above list clearly shows. Yet, throughout a hospice experience, there is always something new to be hoped for, even when it is simply a final smile or hand squeeze, a last “I love you” or a final moment of peaceful prayer.
Despite the sadness of the occasion, hope is a positive healing factor as it continues to be redefined and recreated in those who grieve the loss. Now we begin to hope that our memories will remain strong. We hope that we can live up to our loved one’s dreams and wishes for us. We hope that our loved one’s presence will become a part of us as we continue to learn and grow from this experience.