Gail Sheehy: Careful Planning Can Extend Quality of Life

Gasper Tringale

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

4 comments so far.

  1. avatar Linda Myers says:

    I would hope the boomers will find this option more so in the years to come than past generations who went through life feeling nursing homes would be the exit point of life. I read about a 92 year old woman in CA not too long ago, a decade ago she was given this option after being told of her heart condition. Go home, there is nothing we can do. She said by deciding each day to live it full, she was alive beyond the expectations. In nursing homes at any age, they lose that eager feeling about life. Good article.

  2. avatar Chris Glass` says:

    We had this discussion when my husband was diagnosed with Myasthenia Gravis over twenty years ago. It was reinforced when my mother was dying of cancer. We both decided we wanted a DNR if our lives were no longer viable along with hospice. We gave copies of our wishes to the kids.
     
    Palliative care was the only sensible option for my husband because you can’t regrow receptors or force the muscles to regenerate. The decision allowed us to live a normal healthy life because we take advantage of what we can do while he is still mobile. Myasthenia is not a killer but a weakened immune system leaves a person open to a host of secondary problems gathered along the way. It takes the second guessing out of the situation should something unexpected happen. When there is no cure you should prepare so you can stay in your own home surrounded by family. It protects the family from having a doctor or hospital forcing the patient and family into accepting treatments that neither prolong life or comfort but do drain needed financial resources.

  3. avatar JennJilks says:

    End of life planning is crucial. We will all face it. It is important for adult family members to understand one’s wishes. Many live difficult lives, and this is a conversation that must be had. Power of Attorney is important, too.
    There are five question we all need our loved ones to understand. http://ontarioseniors.blogspot.com/2010/11/advance-care-directives.html
     

  4. avatar Lila says:

    Thanks for this article.  Too many people don’t want to think about these things and never plan for them, and if they have a sudden debilitating illness, they may have missed their chance to really express their wishes.
     
    We have lost four relatives to terminal illness in the last two years.  The youngest was just 49.  The prognoses in all of these cases were pessimistic; chances of survival were very poor.  Two attempted treatment, which only poisoned the small remainder of their lives.  The other two had palliative care only, and their quality of life was much, much better up until the very last couple of days.
     
    I’m not knocking cancer treatments and attempting to beat one’s disease if there is a reasonable chance; but I think we should be realistic when given a poor prognosis.  I know what my choice will be if ever I get a diagnosis like they had.  I want to live, but – we fail sooner or later, and I would rather enjoy a better quality of life to the end, than to attempt crippling treatments that only rob me of what little health I have left.