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"What is a fear of living? It's being preeminently afraid of dying." - Maya Angelou, (1928-2014), American poet, memoirist and activist.
BY JULIA ANDERSON
Those of us who have watched our parents slip into old age, then face multiple health challenges and finally pass through death’s door, know that the end-of-life journey can be difficult and complicated.
Modern medicine has made old age more possible, even more tolerable than in generations past. The tricky part is how we plan for these last years. We can take steps to make it easier for ourselves and our family.
Legal documents called advanced health care directives -- a living will, do-not-resuscitate instructions and designation of (health care) power of attorney – can smooth the way for ourselves and our families.
Lately, new questions have arisen about how well patients, their families, doctors and other caregivers understand advanced health care directives. Because of confusion by some, The Institute of Medicine and the National Academy of Sciences are calling for improvements in both medical and social services end-of-life care.
A massive report, “Dying in America,” cites these issues --- A lack of awareness or interest by both patients and their families in completing advance directive forms; Lack of institutional support for completing advance directives; Clinicians’ unwillingness to adhere to patients’ wishes, resistance within the medical culture and differences in families’ culture traditions for completing health care directives.
Despite these challenges, we can do a lot to ensure that our own end of life care is as comfortable and meaningful as possible. Here’s how:
1. Accept that fully 70 percent of us who become critically ill at the end of our lives will be incapable of participating in decisions about our health care. Without advance health care directives, we might find ourselves in a hospital intensive care unit under the eye of an “intensivist physician” whose only job is to keep us alive at whatever cost -- physical, emotional and financial.
2. Write a will and create a “living will” outlining the kind of care you wish to receive if you are no longer competent or in a vegetative state. Appoint a legal health care representative to carry out your wishes.
3. Write a Do-Not-Resuscitate directive, which tells any caregivers – doctors, emergency personnel – to not intervene if you have no pulse or are not breathing. You can wear a DNR bracelet or get a tattoo. (Of concern: Even a tattoo didn’t work in one recent emergency room case.)
4. Make it clear to all family members that there will be no heroics. Get your legal directives filed with your doctor, the fire department and all family members.
If you go into a care facility, have the DNR posted in BIG TYPE in plain sight in your room. (Even that measure didn’t prevent a trip to the ER in the year before my mother died at age 98). Only post contact information for your legal health care representative at your care center door. Keep other family member numbers elsewhere, so there is no confusion over who staff should call in an emergency.
5. Tell your "friends" at the care center to not call 911 if you have a health crisis. Remember that if 911 gets involved, all the legally signed requests go out the window. The emergency folks are bound to preserve life...no matter what.
The same goes for doctors in emergency rooms. (A huge brouhaha in California a few years ago created industry turmoil when a bystander called 911 after a fellow care center resident had a stroke but the nursing staff refused to provide aid per her instructions).
6. Legally assign someone with durable power of attorney to manage your financial affairs when or if you become incompetent or incapacitated. Or set up a bank trust that designates you as co-trustee until you hand over management of your financial affairs to the bank.
Make sure that the forms you use for these legal documents are state-specific. You can find them at www.smartlegalforms.com. Or for free printable advance directive forms by state, try AARP at www.aarp.org.
Most of us wish for a peaceful death in bed at home. The reality is seven out of 10 of us will spend our last years in a care facility.
My mother moved to a care facility after breaking her hip at age 95. She wanted to return home but needed 24/7 care at a cost of $12,000 a month. She chose the care facility in her home town at $4,500 a month. She met with her attorney to update her health care directives and get them in place. Her strategy mostly worked except for the time the night nurse called 911 after she tipped over and bumped her head. That turned into a three-day hospital stay, which she did not want.
So even with good planning we likely will find weaknesses in our end-of-life initiatives. Some are outlined in “The Good Death,” by Ann Neumann where she writes about the experience of her father’s dying.
“Part of the reason we don’t know how people die is because we no longer see it up close,” she writes. “Death has been put off and professionalized to the point where we no longer have to dirty our hands with it.”But we should. We can help ourselves and our loved ones do better by getting our instructions on paper and by talking at length about these issues with our family and our caregivers.
FOR MORE: The Good Death, click here.
Dying in America, click here.
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