Palliative care is about ensuring a quality of life worth living when the body is beyond cure but the spirit is still very much alive
OK, let’s get rid of the term “end-of-life planning.” It has become a political weapon, deliberately used to frighten people into believing their government is out to deny them life-extending treatment when bureaucrats decide they’re too old and sick to deserve it.
The truth is, advance-care planning is just the opposite. It puts control where it belongs — in the hands of the patient and family caregivers. What we really need to plan for is our passage into the In-Between Stage — the years between optimum health and hospice.
When does this In-Between Stage begin? For some it’s in their 50s, when the hamstrings start pulling or the heart skips beats. For others, maybe it’s not until 70, when body parts start aching for replacement. “It begins as soon as people start to develop health problems,” suggests Deborah Ness, leader of the Campaign for Better Care and president of the National Partnership for Women and Families. “We’re finding that more and more people are developing chronic health conditions earlier than they used to.”
Sixty-five percent of Americans in midlife (ages 45-64) live with at least one chronic illness, according to a national 2009 study reported in Health Affairs. There has been an even more dramatic increase among Medicare beneficiaries, who report three or more chronic conditions, and that jump occurred nearly equally across sex, race, ethnicity and income groups.
Why? Because medicine — both curative care and integrative therapies — has made it possible for us to live with illnesses that used to be death sentences. That includes many cancers, stroke, heart failure and all forms of memory decline. Today, any one of these may turn into a chronic condition — manageable, but not curable.
Patients repeatedly tell researchers that what they really want is individualized care planning at every stage in their adult lives. As we get older and develop multiple chronic conditions or serious health problems, the need for advance-care planning increases. It should be a routine part of our medical care.
The last thing most of us would want is to be rushed off to the hospital with a stroke or heart attack or emergency surgery and be peppered by harried staff with questions about what extreme measures we want or don’t want, when all we can think about is getting out of pain.
Palliative care, in my view, is the future of care for those of us entering the In-Between Stage. Its aim is to treat symptoms and relieve suffering, and it can be offered when we are first diagnosed with a serious illness. It’s not the same as hospice, which is available only in the last six months of life.
Palliative care is about supporting patient and caregiver in a quality of life worth living when the body is beyond cure but the spirit is still very much alive.
Chronic conditions that may last for years or even decades can be managed with palliative care. It can be provided in the hospital or at home with a team including a doctor, visiting nurse and social worker, and can be combined with medical treatment if desired.
“We have taken care of people at home with palliative care for six or seven years — people with a range of cancers, scleroderma, emphysema and shortness of breath,” says Diane Meier, a geriatrician at the Mount Sinai School of Medicine.
Sadly, the more common route is a revolving door from hospital to rehab to rehospitalization, which is especially debilitating for older people. They can’t tell day from night. They can’t fight antibiotic-resistant infections. They can’t talk back to overworked staff. The sense of isolation and total loss of control has an adverse effect on the immune system.
By contrast, groundbreaking research from Harvard and other research centers shows that palliative care may actually prolong life.
Doctors themselves often resist broaching the subject of end of life with their patients because it implies their failure to cure. It may be that we, as the “worried well” entering the In-Between Stage, have to educate ourselves about palliative care and bring our physicians up to speed.
Boomers matriculating to Medicare are certainly old enough to begin talking turkey about advance-care planning. And once we have the first conversation, the rest is gravy.
Editor’s Note: Journalist and lecturer Gail Sheehy is the author of 16 books about adult life stages, including Passages in Caregiving: Turning Chaos into Confidence. This story appears in USA Today