The Ability to Say Goodbye

To so many of us, hospice is an obscene word: sending someone off to die. It's giving up. And it is so far from that.

I was fortunate to spend the last decade of my career as a Physician Assistant working in an oncology practice with a sensitive, caring oncologist who bent the rules and gave patients the time they needed, not what the insurance company dictated. We were honest about what they were going through, and as soon as a patient was given a diagnosis of stage 4/incurable cancer, we discussed palliative care and hospice so there would be no surprises. 

 I just said “goodbye” to one of these patients. Donna was diagnosed with breast cancer many years ago, and it became metastatic 11 years ago! She has lived with metastatic cancer for 11 years and, for the past few having the benefit of palliative care, being taken care of, and still being treated.  She is still alive, talking with her family and friends and beginning to say goodbye.  But nobody knows when she will actually pass, but it will be with dignity and no pain.

 Palliative care is not hospice. It provides comfort and supportive care to people with serious medical conditions, perhaps terminal, while still receiving treatment. They help with pain control and quality of life.

 Hospice is care when suffering from a terminal illness (cancer, heart failure, to name a few), making sure the patient and family are comfortable in all ways. Hospice care is offered to people living in their homes as well as in a facility when the end is in sight. It has been found that people in hospice care live longer and better once they have accepted their prognosis. Just look at Jimmy Carter—two years of hospice care.

  To me, one of the biggest benefits of both palliative care and hospice care is the ability to talk about death and say goodbye. My mother died in 1969 at the age of 52 after surgery to repair two damaged (due to rheumatic fever as a child) heart valves. My mother knew she was going to die, but we didn't discuss it in those days. The closest she came was telling me about her funeral. We lived in a town where we had two Jewish funeral homes; my mom said, and I remember this vividly 53 years later, "When I die, I don't want my funeral to be at Bernheim’s. I don't like his mustache; please take me to Apter’s.  We went to Apter’s for her, and she died shortly afterward, and that was it.  We sat shiva, and there was no therapy or discussion. It was over, and life went on with a huge hole and no discussion.

 We need to talk about death, palliative care, and hospice. We will all go through it. With my patient/friend Donna, I called her to say goodbye and reflect on all we shared, including the trips to the ER, stories about her daughter, etc.

 Let's make it as easy as possible to discuss the end of life and say goodbye, mixed with tears. Donna asked me not to forget her, and I never will. We should never forget our loved ones who died; talk about them and use their names; learn from Donna, speak openly on this once-taboo subject, and feel comfortable about saying goodbye.

  When I texted Donna this week, she shared something so meaningful with me. She said that she was told that we die twice, once when our soul goes to heaven and then when people stop talking about us. Just think about that for a minute. How often do we talk about people who die? Not much, why? Does it make us think about our mortality? We should discuss it, and my pledge is never to stop talking or thinking about Donna, my parents, or my friends. We owe it to them; they lived and were part of our lives. Let's keep them alive forever! Thank you, Donna, for sharing this with me.