Health, Hope and Hospice

“The word "hospice" comes from the Latin "hospitium" meaning guesthouse. It was originally described a place of shelter for weary and sick travelers returning from religious pilgrimages. During the 1960's, Dr. Cicely Saunders began the modern hospice movement by establishing St. Christopher's Hospice near London. St. Christopher's organized a team approach to professional caregiving, and was the first program to use modern pain management techniques to compassionately care for the dying. The first hospice in the United States was established in New Haven, Connecticut in 1974.”

Medical Author: William C. Shiel Jr., MD, FACP, FACR

When I began writing this article about my personal hospice experiences, it was before COVID 19, grew to its current levels, becoming increasingly more extensive in the United States and around the world. After finishing my first draft, more and more people were reportedly infected, and loss of life had begun to rise.

As I read and watched the daily news reports, it made me think about how will or can hospice care address the needs of such a widespread loss of lives. I decided to research how hospice care is or is not being used during this critical time of need.  My reflection on my own hospice experiences is still relevant; however, was not cloaked in a world-wide situation of need for treatment, quarantine, and overwhelming numbers of people who are dying. 

I share a quote regarding current needs, as it speaks to the need and the emotional effects of the decisions surrounding end of life choices in very stressful times. The quote comes from a local hospice center from an interview regarding current hospice services and challenges, that addresses, not just the services provided, but acknowledges the emotional concerns of all involved; those receiving services, the service providers and the family members or friends:

“We’re still caring for individuals who are going through the toughest journey they’ll probably experience in their life, watching a loved one transition from this life to death,” said Phil Ward, chief operating officer of Community Hospice. “They’re already dealing with that chaos, and now comes this onslaught, all this additional stress and anxiety.” Jacksonville, FL

Between 2001 and 2014, I had five different hospice experiences. My first was with my father, then my mother, followed by my brother, aunt and lastly my uncle. Each situation was different. Each person and my relation to them was different and each hospice agency was different.  My five hospice experiences were not overshadowed by the inability to be at the bedside of those under hospice care. Today, due to the quarantines and the fact that visitations have been ended for facilities such as hospitals, nursing homes, hospice centers, etc. means that we may not be able to be at the bedside when we say our final goodbyes.

Three of my family members were in Florida when hospice was called in to help and my other two family in need were in Michigan. I am not preaching about what I feel is best for anyone reading my experience. Instead, I share how hospice helped my family members pass with caring support and comfort measures, when all other options were exhausted. When the hospice option was presented for my father, it was my first experience with making such a decision. I recall feeling stressed, torn, overwhelmed and not ready to face this life and death decision making experience. Specifically, the choice presented was to have my father fed via a feeding tube or to call in hospice. Fortunately, I had my sister to discuss our options. The doctor in charge of my father’s care was in favor of the feeding tube. My father was unable to eat without aspirating, specifically, the food would infiltrate his lungs as his ability to swallow any food, including pureed, put him at high risk. And, his dementia meant he did not understand why he could not eat, and the risk was him ripping out his feeding tube, so the decision was to go with hospice care. His final two days were spent talking with his nurse, telling his stories. And, his final breath was taken with my sister by his bedside.

I found no major difference between the two states where my family members received hospice care. With each agency, staff included a physician, social workers, hospice nurses and chaplains.  The hospice care and goals were the same, and with each hospice agency the care was similar, but the personalities and systems were different. For me, the personalities and the communication had the most impact on the process and how I and/or my family member in need coped with the experience. Each family member presented different needs and issues, so each time I learned or experienced new feelings. Having a family member under hospice care came with an array of mixed emotions. In terms of health concerns, the feelings were mixed. Reality tended to sneak up on me. Sometimes I was hopeful, but much of the time I feared impending loss and I felt helpless and hopeless. I realized that some of what got me through these times was hanging on to hope for whomever I was caring for at the time. Seeing them suffering left me feeling defeated and hopeless during especially difficult times.

Health and hope are what I wished and prayed for with each family member I helped. Most of the time, I was in another state than my loved ones. This was challenging but knowing that hospice was involved gave me some sense of solace. With my mother and my aunt, hospice care prolonged their lives. My aunt lived a year from the time hospice care started. The extra care and attention, including a volunteer, who visited my aunt with her five-year-old little girl, provided hope and joy and caring attention. I was in another state, so I spoke to my aunt by phone daily. She loved telling me about the little girl who came with her mother to visit her and brought her gifts, such as a handmade throw blanket. I believe that the attention she received prolonged her life and increased the quality of her life. It was comforting for me to know that someone who cared was able to visit with my aunt, when I could not be there for her.

Hospice is not something everyone trusts, believes in, nor sees as an option of care for various reasons. For some, there is fear that calling hospice in to help, is tantamount to a death sentence. In my five experiences, I found the option to be the best under the circumstances. Watching someone suffer despite all medical options provided was something I had a very difficult time watching. Hospice offered an alternative, which included palliative care, which meant comfort care. To me, it seemed to be the most humane approach to helping my loved one’s cope with some very difficult end of life situations.

One of the most unanticipated feelings and experiences was when I was by the bedside of my loved one and watched them take their final breath. What surprised me most, was that even though I knew death was imminent, when the last breath was taken, it was as though I never knew it was coming. My breath was also taken away. I recall feeling shocked. My whole body shook, and the tears seemed to be unending. For me, even knowing that death was near, it was as though I never knew it was going to happen. Thankfully, I had supportive people with me; something that I didn’t know beforehand, just how important that would be for me when the time came to say my final goodbye.

My heart goes out to all facing these emotionally challenging decisions, involving separation, the unknowns and all that surrounds this uncharted territory for everyone, from the experts to all people affected during these very difficult times. Stay connected and reach out for information. Knowledge and a sense of community is power and will help you make decisions and find the support you will need.