By Margo W. Steinberg, MSW, LCSW
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 worditself shows, there is 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 help patient and family to come to terms with death, and provide the best possible patient care.
Hospice social workers play a key role in the 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 care-giving by various family members. It involves dealing with the fear of dying.
Social workers can help families imagine and talk about the future. Most importantly, they can offer emotional support and encouragement to both patient and family so they can say the important things that need to be said and spend the time they have left together in a rich and meaningful way.
Reactions to a Terminal Diagnosis
Patients and families react in many different ways when receiving a terminal diagnosis and the suggestion that it is 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 dying at home.
Others may deny their situation and continue as normal, or overcompensate by living life more vibrantly. No reaction is better than another. They are simply different reactions to a stressful, frightening, and sad moment in time.
Reasons for Hope
Regardless of how the patient and family approach their situation, there are reasons for to be hopeful, including:
- The patient live longer than the physician initially suggested
- Going places and doing things we’ve always wanted to try
- 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 to loved ones
- The chance to explore or confirm a personal spiritual meaning of life
- Opportunities for tell others how important they have been in our lives
- Time to share our hopes and dreams for other family members
- More days of feeling good rather than feeling sick
- 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
Conclusion
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.
