The one statement I have heard about hospice again and again is that people wish they had contacted hospice sooner. I wasn’t sure how someone would know that sooner was the right time, so I wondered what that meant, until our family finally had the experience of watching – and experiencing – what hospice can do to make the last days, weeks, even months or more, of someone’s life as pain free, comfortable and fulfilling as possible.
When my baby brother was diagnosed with leukemia in August 2010, we learned that if he didn’t undergo chemotherapy right away, he would likely live only one to two months. When his remission lasted only two weeks, we learned that we would have to wait to see how quickly his strength recovered to know whether he could undergo a second round. Within just a few more weeks we learned that there wasn’t anything more that the doctors could do for him. We talked with his doctor about hospice care as an option, but he slipped away before we could take any action, seven weeks after his diagnosis.
Then in August 2011, when it was clear that my dad would not be able to return to his apartment and we moved him into the long-term care section of a nursing home, one of the emergency room doctors who treated Dad on a recent trip there told us that at some point there would be nothing more that they could do for Dad. When that happened, hospice would be an alternative we should explore.
So we contacted Hospice of the Red River Valley. One of the RNs met with several of us to talk about what hospice could do for Dad – and for the rest of us – and what they couldn’t do. For us, the most attractive service was that hospice would take over as Dad’s primary medical advocate. Instead of my brother and his wife being called to decide if Dad should be sent to the emergency room to have blood drawn or urine samples taken when the nursing home staff were concerned that his blood sugar level was too high or when his behavior made them suspect he had a bladder infection, hospice would send an RN to Dad to take those samples, eliminating both the cost of the ambulance rides between the nursing home and the hospital as well as the confusion those trips caused Dad. But she warned us that it wasn’t automatic that Dad would be accepted for hospice care. She would have to assess him and it would be the medical director of Hospice who would decide if he fell within the guidelines.
After talking with us, she talked with Dad, explaining that she represented an organization that could provide him with additional help while he was in the nursing home, services beyond what the nursing home could provide. Those services included a team of people he could contact for help – an RN, a social worker, a chaplain – in addition to volunteer visitors who would come to visit him, to play cards with him, to read to him. Dad had a couple of questions including just what it would cost. He was surprised when she said that Medicare would cover 100% of the costs. After answering his questions, she asked if Dad would welcome these services. He said he would so she asked him some questions and took some measurements for the assessment.
At that point, the hospice medical director determined that Dad hadn’t yet reached the point that hospice would be the right option. It wasn’t an unhappy conclusion because it meant that those who are in a better position to forecast the future believed that Dad’s health was better than we thought. But more importantly, because of the consultation, we had an excellent understanding of what hospice could do when the time did come.
Then, when Dad had his fifth stroke and his short-term memory became impaired, we knew that the time was right for raising the issue of hospice care again. This time, the medical director agreed that Dad’s condition was within the guidelines. One of the first steps was to stop many of the medications with side effects that negatively impacted Dad’s quality of life. Orders were written that permitted the nursing staff at the nursing home to provide pain management medications to Dad on an as-needed basis. An RN, a social worker, and a chaplain began visiting Dad each week. And occasionally a volunteer, usually a student from one of the local colleges, would visit to play cards or just talk with Dad.
In the final weeks of Dad’s life, calls from hospice staff to my sister-in-law, an RN herself and therefore our translator in all things medical, ensured that we all knew when his health was failing more quickly, allowing us all to make appropriate plans to be with Dad and one another.
Before, I had thought that being under hospice care meant there was no hope. And that meant for family members, considering hospice was something to avoid. And that explains why people often said they wished they had considered hospice sooner. But now I know that I was wrong. Hospice care provides hope. Talking about hospice care, setting up a consultation with hospice providers should not be avoided, even if it seems too soon. We did and that made all the difference in getting Dad under hospice care at the right time.
Take time to learn about hospice now, before you think you will need it.