Calling 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.