I received a telephone call recently from a man who was angry and upset. All he could say was, but I’m not dying, I’m not dying! I was finally able to calm him down enough to be able to get him to tell me his story.
It seems that his doctor told him that it was time to move on to palliative medicine. His immediate response was to protest, he told me that “I’m not ready to give up.”
I explained that this was probably a problem of communication between him and his doctor. He thought that palliative care meant that the doctor was recommending hospice care. What many of us need to know is that hospice care is only a small part of palliative care. According to the National Cancer Institute (NCI), palliative care is given to improve the quality of life in people with serious and life-threatening illnesses. Palliative care is specifically designed to prevent or treat, along with curative treatments, the many symptoms from the disease and its treatments. Palliative care does not mean hospice care.
Many of the best doctors believe that palliative care should start from the first day after diagnosis of a serious illness. Whether the disease course is one month or ten years, palliative care should be a major component of the care program. Dr. Diane Meier, Director of the Center to Advance Palliative Care at the Mt. Sinai School of Medicine in New York has said, “The goal is to lighten the burden and make additional years worth living. It’s part of the healing, recovery and life sustaining process.” (C3 Momentum – Volume 5, Issue 3, Summer 2010)
She added that good palliative care actually affects how a person tolerates the other therapies they receive. Palliative care heals the body and the soul and allows a person to move on with a productive and quality life.
Let us not forget that dealing with a life threatening illness like advanced prostate cancer, will also cause stress on a man’s family, especially on the spouse, his partner and his children. The entire family is impacted, often turning the family upside down. Interpersonal relationships and financial problems often develop, making life hard for both the man and his family.
Good palliative care involves an interdisciplinary team. The team should include the medical doctors, their staff, a mental health worker ( social worker, psychologist or a psychiatrist), a clergy member, a nutritionist and a rehabilitative specialist. This team should work together to improve a patient’s life.
A good palliative care team will help a patient and their family better understand their disease, the options that are available to them and what side effects might accompany a treatment. All these will add up to an informed and empowered patient who can take control of their treatment and, more importantly, their life.
When the time does come, this team can help the patient and their family makes the decision to move to hospice care. This decision is often less traumatic when the patient has had the prior support of a good palliative care team.
Resources on palliative care:
Joel T. Nowak, MA, MSW
I think the problem goes further than communication between patient and doctor; the problem is that the word “palliative” has had its meaning hijacked. It first meaning was “soothing, pain-easing”. It then shifted a little to “symptom-reducing”. Both links you cited as resources echo that definition (“Palliative care is comfort care”; Palliative care relieves symptoms”).
This is, unfortunately, now misleading or even mistaken. Such websites should start warning patients that the word is now very commonly used by doctors and (especially) insurance companies to mean something quite different — something along the lines of “with noncurative intent”.
For example, leuprolide/Lupron is classified as a palliative. Nonsense! When I started on Lupron, I was complaint-free; I had no discomfort to ease and no symptoms to relieve. (Once I was on it, I had *plenty* of symptoms; but that’s a different topic.)
This type of word-hijacking, and this patient’s story generally, are emblematic of a now-endemic problem in American medicine: The treatment of diseases and conditions instead of patients.
The goal of most medicine has now become “To rid a body of illness and diminish the likelihood of future illness; failing that, to prolong the body’s functions and remedy/ameliorate its dysfunctions.” This can mismatch and even work against the medical goal people actually want: “To promote health and prolong life at the highest quality possible.”
At a more basic level, if the doctor in this story had started his conversation by helping the patient articulate the goal they were working towards, his ill-chosen use of the word “palliative” would have become a non-issue.
Thanks Joel & Paul C., your comments and explanation are most helpful.
For the past year I have been tearing off the calendar pages on the countdown to extinction, what with mets and all.
Suddenly, with the last series of scans, etc. even with a rising PSA, my mets had not increased, and there were no new areas for concern.
I’ve a better understanding, that the pallative care and fates have worked, at least for a bit.
I feel great now, at least until Sept and my next scans.