You may have heard the story about the little boy who is asked to give his blood to his sister to save her life. He agrees, and after the transfusion begins he asks, “How long until I die?” I cry every time I read that story! Poor thing thought a blood transfusion meant he would die so his sister would live – how heroic of him and what an inspiring story!
Like the little boy, many patients referred to hospice don’t understand how it works…this whole end of life care thing. Many people have never lost someone close due to terminal illness or have any experience with hospice care. A few have never been to a funeral.
The inpatient hospice unit saw most of their admissions from home patients already enrolled to the hospice program who had a change in condition such as uncontrolled pain or seizures. Or, the admission was from the hospital and the patient was actively dying. The term “actively dying”, to me, means there’s no coming back. The person usually passes within hours or days, maybe a few weeks at the most. The patient might be comatose or alert, flaccid or combative, but there will be changes in breathing, blood pressure, temperature, and fluid shifts. Actively dying.
When I began visiting hospice patients at home, there were many things to learn about the types of patients I saw. First, the patient and family at times had no idea what hospice meant. They did not know it was end of life care, or that they were facing the end of their life. Some still had jobs and planned to continue working, and sometimes I had to start the admission process by reviewing what it is they actually knew about their diagnosis. I believe the total oblivion of a terminal illness is, in part, denial. These people are grieving an anticipated loss of life, and Kubler-Ross writes the first stage of grief is denial. The home hospice admissions sometimes start with a review of treatment for the diagnosis, this way the patient can understand why he or she has been referred for hospice care.
Then there are the other patients. The ones like the little boy, expecting death to happen because of one event like a transfusion. Completely accepting his fate without fear or regret, peacefully waiting to ‘feel’ a change. Some hospice patients are accepting of a terminal diagnosis in this way. There has been so much in the news about assisted suicide, it’s no wonder a lot of folks are confused about how things work in hospice and end of life care. One couple showed me just how confusing.
The patient, let’s call him Mr. Sanchez, was an immigrant from South America. He’d been in the U.S. since he served in the Vietnam war with the U.S. Army, married, raised a family, and ran a successful business. He and his wife lived in an upscale retirement community, and they hired a private caregiver to assist with his needs. So, there he was, sitting on the couch asking all the appropriate questions about hospice, like who pays for it, will it hurt when he dies, and what happens with his body afterward.
“Okay, I think I understand. So, when do you give me the little black pill?”
“Little black pill?” I was just beginning to review his medications, but didn’t see any black pills.
“Yeah, the pill. Isn’t that how this works?” He was dead serious. Literally. “I take the pill and I go lay down…”. I was dumbfounded. He thought I’d brought a death cocktail.
“Sweetie,” his wife intervened, “there is no pill. She brought medicines to keep you comfortable.”
Indeed, I had brought a Comfort Kit from the pharmacy. This Comfort Kit is standard for all hospice admissions in most countries where hospice programs exist. The box goes in the refrigerator, a place that all homes would normally have available, and contains Morphine, Ativan, Haldol, Atropine, and Phenergan. Some hospices add Senna tablets or Dulcolax suppositories, and if the patient has allergies then substitutions are provided. But there is NO black pill. No death cocktail. The box contains nothing intended to do anything buy alleviate symptoms.
Mr. Sanchez was not a well educated man, but he was sharp and affluent in business and dealings of the world. I was flabbergasted. Fortunately, the hospice social worker was with me for this admission. This is one of the best things about working in hospice – it’s a team effort. Hospice provides complete care at the end of life, and it’s just not feasible for one professional to adequately care for all the emotional support and education the family will need. It takes a team of professionals.
When Mr. Sanchez asked about the little black pill, the social worker moved to sit closer to him while I picked up his box of medications and moved to the kitchen with Mrs. Sanchez. This gave me the opportunity to explain the Comfort Kit and review all his other medication while the social worker talked more to Mr. Sanchez about his acceptance of the hospice program. They discussed the hospice philosophy, and how hospice focuses on living more than dying. The ultimate goal is for a peaceful death, and for that to happen a person must be at peace with dying. There is no one way to accomplish this, but sometimes a life review helps. It could be looking at old photos, reconnecting with loved ones, or checking off a bucket list item or two. Facing death is what allows a person to live well during the end of their life. It is about the quality of life remaining, not as much about the quantity of time left.
All worked out well for this family; it was a good death. Mr. Sanchez invited his friends and family to a celebration of life, something like a wake before anyone dies. The family held a small, private service after his death, but for two days friends and family stopped by for an open house. There was food on the table all day and night, lots of reunions, hugs, tears, laughs and expressions of love passed around. He was alert and looking good. He had a beautiful life review by looking at old photos, talking with loved ones, and realizing he had lived life to the fullest. Some visitors that weekend said they were baffled about the get-together, just as he was about hospice philosophy in the beginning. It’s not about dying, he told them, it’s about living well before you die. Well done, Mr. Sanchez, well done.
Photo credit from Pinterest via jacony.tumblr.com.