Ambassadors for Hospice
By Fran Moore, PT
The tension in the home was palpable. The patient (whom I’ll call Sam) would not (could not?) get off of the living room couch. He was in pain. His heart was failing. His daughter and her family, who adored this previously strong and robust man, were desperate and frustrated. He was recently discharged from the hospital because there was nothing else that the doctors could do for him. He was not in much better shape than he had been in prior to his most recent admission to the hospital. He didn’t want to go back there again. Clearly, his best days were behind him. Or were they?
I was called in for physical therapy to perform the miracle of making Sam strong and whole again. At least, that’s how it feels when I walk into a seemingly impossible situation in a home that is in emotional chaos.
The homecare nurse on the case, who had been there earlier in the day, was busy with managing Sam’s multiple medications and caring for his bed sores. I got to work on rearranging some furniture so that I could at least teach Sam’s daughter, Ellen, how to safely help him move from the couch to a bedside commode. It wasn’t easy. I took a step back. I realized that neither Sam nor Ellen had the energy to perform this activity for much longer.
Ellen was distraught. Her teenage children were home from school for the summer, and they were dedicated to doing whatever they could to help their grandfather, who had lived with them, and whom they loved dearly. But Ellen felt that she didn’t want to “ruin the kids’ summer.” Ellen looked towards physical therapy as Sam’s only hope to get his muscles stronger so that he could become independent in the home again. I knew, though, that Sam’s heart was so badly damaged it could no longer support those muscles.
“Have you considered Hospice?” I asked, gently. As soon as the words were out of my mouth, I knew I was out on a limb. Who am I that I even have the right to make that suggestion?! I’m not a doctor, or a hospice nurse, or a social worker. I’m just a person who has had the good fortune to experience the multifaceted benefits that hospice has brought to patients such as Sam. I am a link. I’m a small part of a big team.
Ellen was tearful when she told me that a doctor had mentioned hospice to her several months ago, but she didn’t even want to think about that. She had struggled to keep her Dad functioning at home, and she didn’t want to “give up.” How often had I heard those words! “Hospice = Giving Up.” Ellen said that she didn’t want to relinquish the opportunity for Sam to have physical therapy. He had always loved to exercise as a younger man.
I was happy to report that Sam could still have physical therapy as a hospice patient. I was also able to tell her that the door doesn’t close behind you if you choose to enter hospice. Hospice isn’t a place that you go to and never come back. Hospice is a service that can help to support patients, families, and their loved ones at the end of life so that the patient can live in comfort and with quality that is unique to every individual situation. Ellen cried tears of relief. She didn’t expect to hear that suggestion from a rehab specialist. But she seemed to appreciate my perspective.
Sam signed on to hospice a few days later. His pain was treated and controlled, and his family was able to enjoy their time with him with a love that was as strong as ever, but in a way that was precious and different. I saw him on and off for physical therapy during the months that he was on hospice. He did finally get up off of that couch, and he was able to walk for a while.
After Sam died, Ellen spoke fondly of those final months with her Dad. The hospice team had helped Ellen and her family to deal with their stress in many ways and to see Dad’s life with more clarity. They were fortunate enough to benefit from many of the services that hospice provided, including complementary therapy, pastoral care, nursing, volunteer services and social work. “My only regret was that I didn’t know what hospice about sooner,” Ellen reflected. Ellen is now an ambassador for hospice.
Many of us who have had the opportunity to experience the benefits of hospice – as caregivers, friends or family members – can be ambassadors for hospice. We may not be experts. Our link to the experts can help to determine if a potential patient is even a candidate for hospice. But we might be in a position to ask a question that could change lives: “Have you considered hospice?”