Facing Death of Breast Cancer: Making the Decision to Call Hospice
In a group, everyone has a role—the planner, the comedian, the peacemaker. It just sort of happens, and we rarely even think about our own role in a group. In my cancer support groups, one of my roles is “the person who tells people to call hospice.”
It’s a strange role, and I’m not sure how it became mine. Of course, everyone wants to get well after cancer treatment and never hear the ugly words recurrence or metastasis, but some people do. These days Stage IV cancer patients often have years more of high-quality life. However, sometimes the spread of the cancer can’t be stopped, and either the doctor runs out of treatments to try or the patient says, “I’ve had enough.”
When the doctor is the one who suggests patients call hospice, the patient often feels betrayed and says, “I’m not done fighting. How dare my doctor who has kept me alive all this time give up hope?”
When the patient decides to stop treatment, we often hear from family members who say, “My mom wants to stop treatment. I don’t want her to give up hope.”
That’s when I write some variation of the following:
Calling hospice is not about giving up hope. When you call hospice for yourself, you are hoping that your family members will have practical and emotional support in the final days of your life. When you call hospice for your mother or sister, you are hoping that she will get the best possible treatment to keep her comfortable and pain-free. The hospice people are THE experts in pain management.
Everyone I know who has used their services says they wish they had called sooner. My friend who is a chaplain at a hospice in Missouri says the actual length of time most people are under hospice care in her organization is only a few days because people are so afraid to call. Calling hospice means saying out loud that death really will happen, and our culture is uncomfortable with that idea.
The idea of hospice is to provide physical, emotional and practical services to people in their final stage of life. Usually, part of entering hospice care for cancer patients means stopping chemo treatments designed to prolong life. That’s not an easy decision to make.
Each hospice is its own organization, so not every hospice has the same services, but most have counseling and evaluation services that can help people decide if they really are to the point where they want to stop treatment. Calling hospice doesn’t commit you to using their services; after talking with them you might realize that you do have the energy to enter that trial of a new treatment.
Some people call hospice, decide they aren’t quite ready for it, but find it immensely comforting to know what services their community can provide when the time comes.
I don’t know how I became the “call hospice” person in my cancer support groups. I had never used their services personally—until now.
Five days ago I called to congratulate my father on his 93rd birthday. He has become increasingly frail over the last few years, but his mind has been good, and I was looking forward to a nice phone chat. Instead, I learned that he was drifting in and out of consciousness and couldn’t swallow. My husband and I left immediately to start the eight-hour drive to his home.
He rallied some while we were there, but once again I was the “call hospice” person. I guess I’d been practicing for this day for a long time. My sisters thought it was a good idea, but my mother wasn’t so sure. I explained to her that calling them didn’t commit her to anything; but it would give us some ideas about how to keep Daddy comfortable. I suggested she call my dad’s doctor and ask. (Most of the time you need a doctor’s referral for hospice services.)
Mom called the doctor’s office Monday morning. Monday afternoon Montgomery Hospice called her to get more information and set up the appointment. Tuesday afternoon the nurse and social worker were at my parents’ home talking to my dad, mom and one of my sisters. Later my mother, my sisters and I had a conference call to discuss what happened. My sister kept praising their professionalism and ability to pick up on the nuances of our family’s dynamics.
It is clear from just this first step that everyone feels much better about our situation. My dad has continued to improve since my hurried visit last weekend, but we know he won’t be able to bounce back completely. We are extraordinarily comforted by knowing that professional people will be with us through this journey helping us keep dad at home and as comfortable as possible while helping us care for him.
We certainly haven’t given up hope. Hospice has given us all kinds of new hope.