2022 Hospice Learnings
Over the last year, I spent more time on my Hospice volunteer work with patients and their families. The time I spent with patients and their loved ones proved to be instructive on many levels. I participated in life celebrations for four patients. A change in Hospice providers gave me the opportunity to take a new round of training. I also gained an appreciation for the role of Volunteer Coordinator. This blog on my experiences with Hospice and what I learned about living from dying people, makes it possible for others to benefit from my observations. I have also stepped up my involvement with the Hospice administration, and I plan on developing a new type of patient legacy program in the new year.
In 2022, I was more heavily involved with Hospice. I spent over 160 hours volunteering with patients and families. I spent another 150 hours writing about my Hospice work and researching ways to improve the patient and family experience. I look for learnings in how my patients address their few remaining weeks of life. Many of my patients have expressed themselves in ways that led me to valuable lessons on living.
The Corona Virus pandemic of 2020 put a severe damper on in-home visits. Some Hospices still offered home visits, but most families were looking to limit their exposure to outsiders. Many drew the line at comfort care volunteers. This year, hospice volunteers returned to spending more time in people's homes. It took a couple years to get closer to where we were in 2019. Though, we are still not back all the way. The number of patients accepting a comfort care volunteer is still below 2019 levels.
“The fear of death follows from the fear of life. A man who lives fully is prepared to die at any time.”
Nevertheless, I am now seeing most of my patients in their homes. I prefer this, as I meet the primary family caregivers, which gives me more information about the patient and other people to help and support. I learn a lot about patients from the family caregivers. I can use that information to gain rapport and provide a comfortable space for the patient and me to occupy together. This is especially helpful when I have a minimally communicative patient.
Dementia patients often can not express their preferences for visit activities. I had a patient who I was told liked music, but when I played her classical or jazz or country or other genres I listen to, there was not much of a response. Her husband then told me she liked big band music from the forties and fifties. He led me to a mahogany bureau with 20th Century record player and hundreds of big band albums on vinyl. A few seconds after the needle hit that black, rotating disk, and trumpets of Glenn Miller band rang through the file cabinet-sized wooden speakers, my patient was awakened. She tapped her foot to the beat and swayed and smiled. He husband showed me how to take her hands while she stayed in her wheelchair or recliner and "dance" with her. This lifted her entirely out of her somnambulance! I could feel a connection and communication in the beat of the music.
As a result of this experience and many more, I prefer to visit patients in their homes. If that is not possible, I want to speak with the family members closest to the patient. That way I can learn things about my Patients t that will help me connect with them earlier more deeply. My excellent Volunteer Coordinator, Teri, will often do much of this groundwork for me. And that brings me to something I came to fully realize in 2022.
I saw how important a great volunteer coordinator can be for volunteers, patients, and families. I have always appreciated the work that my volunteer coordinator does. Still, my eyes were fully opened when she moved to another Hospice provider. I missed all she did for the patients and families and for me. I quickly decided to follow her to the new Hospice. I wrote about that experience and about the Volunteer Coordinator job here. If you have not read that blog entry, I encourage you to do so, if only to learn about one of the unsung positions in healthcare.
This past year, as a result of my move to a new Hospice, I met several fellow volunteers for the first time. This is always nice, as I learn from them and their different experiences. It is also inspiring to see the volunteers come together when patients have especially challenging needs. This year we had a patient whose family experienced multiple health crises among several people in the family, necessitating more than tripling their volunteer hour needs. We saw several volunteers pull double duty to meet this family's needs. Some volunteers drove from as far away as 45 minutes to be there for this family and patient. It was nice to be part of this effort. We supported a family experiencing extraordinary difficulty, ensuring our patient was not left alone and the family did not have to curtail critical health appointments. The volunteers at Hospice of the Valley in Campbell, California, rose to the challenge!
“Life should not be a journey to the grave with the intention of arriving safely in a pretty and well preserved body, but rather to skid in broadside in a cloud of smoke, thoroughly used up, totally worn out, and loudly proclaiming “Wow! What a Ride!””
This last year I participated in four life celebrations with the family and friends of patients with whom I grew close. I lost several more patients, but I don't attend memorials for all my patients. About half the patients I see join Hospice very late in their transition to death. I see these people only once or twice. I don't have the opportunity to form a deep relationship with the patient or family.
All life celebrations are different, and it is fascinating to experience many unique celebration traditions. I attended a Southern Baptist/Jamaican funeral for Beryl. There was a lot of singing, praising, and hearty hallelujahs and amens. There was far more singing than speaking, with eulogists breaking out in song from the pulpit! It was the most joyous funeral service I have ever witnessed.
At Jim's life celebration, in a Quaker Friend House, I got to experience the most multi-denominational service I have ever participated in. Looking around the chapel, I could pick out more than a dozen major religious symbols from many religious traditions. The service was solemn and low-key, with quiet, calm songs and a couple short eulogies. There was a heavy emphasis on mysticism and meditation. Bits and pieces of many traditions were sprinkled throughout the service. At that service, more than any other, I felt my former patient's presence.
The family of another patient, Fred, had a nonreligious memorial. This was one of the most inspiring, uplifting, and celebratory memorials I have been to. It consisted of two days during which the family home was open for 8 hours a day. Mourners could arrive and depart at any time. There was a dining table full of food and a book of remembrances to which dozens of people contributed. Also, the family riffed on a significant aspect of Fred's personality, his generosity. He was a very giving person and would usually buy things, little gadgets, for friends and loved ones throughout the year. After Fred died, the family found a massive stash of "gifts" he probably intended to give people over time. They wrapped all these (several dozen) little gifts up and piled the unlabeled presents on a side table. Every guest was asked to take a wrapped present home as a final “gift from Fred”. The tone was happy, with many people reminiscing and telling stories about their fun times with Fred. I learned so much about this gentle man at the memorial. And being able to spend time with his children, I saw him in each of them. I left feeling closer to Fred. And I was happy that I met these wonderful people who celebrated Fred's life most by carrying his gentle, quiet kindness forward in their lives.
I am fascinated by how people celebrate a life that has passed. I am also constantly amazed at how different every life celebration is, despite my having been to so many. Each has its own tone, theme, and traditions. Each memorial is another glimpse into the family and the deceased's life. I often come out knowing even more about the family and their loved one, and often what I see is instructive. For instance, I will often see the deceased in the family's attitudes and actions, which is oddly satisfying. I think this because I get the feeling that the person will continue on in their friends and loved ones.
“Though lovers be lost, love shall not; And death shall have no dominion.”
Another constant and satisfying theme at most memorial services and events is sincere expressions of gratitude for Hospice. The families specifically call out Hospice as instrumental in supporting them and the deceased during the end-of-life process. This feels good to hear and is much appreciated by all the hard-working folks at Hospice. This confirms that Hospice, medicare, and administrative issues aside, is a great organization that does a tremendous amount for the dying and their loved ones. Without Hospice, millions (1.7M hospice patients in 2020) would struggle to keep their dying loved ones comfortable and help them emotionally and spiritually through the final transition.
Finally, this year, I spent many hours researching end-of-life care to expand my ability to connect with and support hospice patients in new ways. In my extensive research, I encountered a legacy project approach and therapeutic protocol called Dignity Therapy.
Dignity therapy was invented by Harvey Max Chochinov, MD, Ph.D., in the early 2000s after he spent several years studying depression in the terminally ill. He posited that depression and suicidal ideation in the terminally ill might be lessened or curtailed altogether if the patients felt they were accomplishing something they could leave behind for their loved ones. Thus Dignity Therapy was born, a protocol that results in a document that is a legacy message for loved ones. Chochinov has conducted numerous peer reviewed studies that empirically show the enormous effectiveness of this approach. Both the patient and the loved ones benefit.
I plan to learn how to use this tool with a few of my patients this year. I hope to help the Hospice I volunteer for develop and fund a program for Dignity Therapy. It would be wonderful if multiple people could be trained to use this technique with patients. That way, we can offer it to all patients. I will keep readers appraised of my efforts. I will also likely write an in-depth article about Dignity Therapy for this blog later this quarter.
This year, I immersed myself more fully in my Hospice work. I spent significant time reflecting on what my dying patients have to teach about living. I’ve had numerous interactions with patients and family members that have inspired and amazed me. The strength that both patients and family show is often nothing short of miraculous. Patients' reflections during their life reviews and transitional death work can often seem plain and simple and, just as often, overwhelming in depth. I think this is because, from their vantage point, patients have nothing to lose in ditching their egos and facing their life and death. Folks well adjusted to this challenging situation can look at their life with clarity and honesty. Somehow most patients get there. I think that is the most astonishing thing for me.
“Many people die at twenty five and aren’t buried until they are seventy five.”
Thus, I think that what I've learned most, and what strikes me as most valuable through all this work, is about death. That is that death is a fundamental part of life, and we all seem to have the capacity to face our end when it comes down to it. We seem to be built to consciously and unconsciously prepare for a final transition out of this world.
Perhaps next year, I will look at what this capability to face death is all about. The above realization leaves me with plenty of questions. How do we face something with such finality when we spend much of our lives running from it? We grieve for others, and we grieve for ourselves before the final few weeks. But in those last days, most people accept and prepare. How? Why?
