By Barbara Sinclair
What do you think when someone mentions hospice? All too often one thinks they are giving up and will die shortly, that nothing else can be done or that it’s only for when one needs morphine. I believe if people really understood the extent and loving care of hospice it would be utilized much sooner. The reality is that much of the time medical hospice agencies and hospice volunteers receive requests for services far too late, thus denying the patient, and their loved ones, important medical options, comfort care and emotional support.
I would like to share a true story. Mrs. J. came to Hospice Volunteers of Hancock County (HVHC) in great distress. For four years, while working full time, Mrs. J. had also been taking care of her spouse, Jim. She needed help and she needed it now. Jim had been diagnosed with a neurodegenerative disorder four years earlier, at age 52. Now he was wheelchair-bound, though able to maneuver the chair with his hand and, thanks to advanced technology, could use the computer.
HVHC provided Jim and Janet with three volunteers, including myself. This gave Janet some respite and she was able to reclaim some activities that were important to her well-being. For the next 13 months, twice weekly, hospice volunteers visited Jim, played scrabble with him, listened to his stories, assisted at meal time, typed his emails and shared laughter over minor mishaps.
When I first interviewed Jim and Janet, I learned they had not been able to discuss or complete an advanced care directive due to the emotions this discussion engendered. His illness would soon be presenting them with difficult and important decisions, and they needed help with that conversation. Once Jim and I developed a level of comfort and trust, we returned to the issue of an advanced directive. I introduced him to The Five Wishes (AgingWithDignity.org), a very useful tool for end-of-life decision making. Each week Jim and I discussed one wish. This discussion highlighting his priorities and what was of value to him. These conversations gave Jim time to consider the issues and his choices so that, by his next visit to the Togus V.A., he was able to complete his advanced directive and assign a health care agent.
Six months into volunteer hospice services, Jim’s condition declined significantly and he was faced with the ultimate choice: What is more important, the possibility of a little more time or the quality of how that time is lived? Jim chose to forgo invasive and aggressive treatments for quality comfort care and asked for medical hospice services delivered in the familiarity of his home.
Hospice volunteers work as members of a team that includes hospice physicians, skilled nurses, nurses’ aides, social work and pastoral care. Jim’s hospice team was able to manage his symptoms and provide adaptive equipment which allowed more comfort and autonomy. Thus Jim was able to remain as independent as was possible in the comfort of his home for another seven months. Rather than dying within a few months of our first meeting, the hospice team enabled Jim and this family to share more than a year of quality time together.
If families or individuals are unsure about eligibility or have other questions about hospice services, the various hospice agencies in the area are happy to visit, discuss services and evaluate patient and family needs.
Barbara Sinclair is a veteran hospice volunteer and co-leader of Choices That Matter advance care planning workshops.