DEAR DOCTOR K:
My mother has a chronic illness. Her doctor told her she needed palliative care. She rejects that because she says palliative care is for patients who have given up.
Without knowing more about your mother’s chronic illness, it’s hard to answer. But it’s possible that your mother may be confusing palliative care with hospice care. It’s a common mistake. Hospice and palliative care are often talked about as if they are the same thing, but they’re not.
Hospice is for people who are expected to live for only a short time and who have stopped treatment aimed at prolonging life. Palliative care is medical care that aims to improve a person’s quality of life during any serious illness, fatal or not. So if your mother’s chronic illness is not fatal, then she really may be misunderstanding what palliative care could offer her.
A person can receive palliative care at any stage of his or her illness. In fact, many people could benefit from palliative care starting soon after the diagnosis of a serious illness.
Comfort is the main goal of palliative care. As a result, identifying and managing pain is often the No. 1 priority. Pain by itself can be extremely debilitating; left untreated, it can suppress the immune system and cause depression.
Palliative care also addresses other types of physical discomfort — for example, shortness of breath, fatigue and insomnia. Constipation can be a major problem. In fact, since it’s a common side effect of certain painkillers, successful treatment of pain often requires treatments for constipation, as well. Cancer patients receiving chemotherapy frequently need help with control of nausea and vomiting.
Psychological and social services, for patients and their caregivers, also are included in palliative care. Even if patients remain even-keeled and don’t need psychological support, they may well need other kinds of support. That includes help with housework, shopping, preparation of meals and self-care. Palliative care specialists can help patients set realistic goals and make treatment choices.
If someone is seriously ill, there are often practical issues he or she may need to contend with: financial pressures, insurance discussions, home support services, coordinating doctors’ appointments, dealing with bureaucratic red tape and arranging transportation. Palliative care can help with this, as well.
I had a patient who developed a disabling illness in her 50s. While it wasn’t a “fatal” illness like cancer, it made it impossible for her to work or carry on most of her responsibilities at home. She knew it was likely that within a year she was going to need lots of help at home — to buy groceries, to cook, to clean.
She told me that even though she didn’t have a fatal disease, she was equally terrified that she (a single woman) would be helpless. Palliative care gave her the support she needed.
I hope you can persuade your mother to take a second look at palliative care. It could make a real difference in her quality of life.
(This column is an update of one that ran originally in October 2012.)