De-Stressing End-of-Life Care NOW (Whatever Healthcare Reform Brings)
Last updated:August 20, 2009
If "death panels" and "government-funded euthanasia" are bad news (as all sides of the health-care reform debate seem to agree), what's better? When dying looms at the end of an eldercare experience "“ as it inevitably does "“ it can be navigated in a less stressful way.
Having experienced both a quick death and a prolonged goodbye with my own parents, I've followed the brouhaha over end-of-life planning with special interest. My [mother] (https://www.caring.com/blogs/caring-currents/questions-i-wish-id-asked-mom) died less than two years ago and my dad is now in a serious decline ("serious" defined as facing dementia, cancer, and stroke, and that's not even counting the urge incontinence and recent inability to walk).
And these gems of wisdom heard amid the debate seem worth pointing out because they can help guide stressed-out family caregivers right now (no matter what Congress does this fall):
- 1. Forget what you've seen on TV.
Our grandparents and great-grandparents saw death at home from a young age. But nowadays, much of it happens in the hospital. Our vision of death tends to be informed by TV and movies, where it's attractively cast, antiseptic, and often thwarted by amazing high-tech interventions. (More than 60 percent of TV characters survive after CPR, but in real life only 5 to 10 percent of patients over 70 do, Jane Brody notes in her New York Times health column this week.)
The reality: "The system defaults toward treatment rather than compassion. Just because we can do a procedure doesn't mean we should," says registered nurse Sara Billings in the [Naples (FL) News] (http://www.naplesnews.com/news/2009/aug/19/guest-commentary-knowledge-power-health-care-debat/). (Worth a read for her personal story.)
Deciding whether and when to end treatment is a difficult, often traumatic, decision that varies by situation. But when evaluating quality of life (right to the very end of life) all options should be on the table "“ because life, and death, aren't like the movies.
- 2. Help the person you care for see that talking about his or her goals regarding end-of-life care is an extension of talking about goals for health care.
Nobody likes to think about death, especially when sick. But normalizing the conversation (ideally before a health crisis, or even once it's underway) is constructive. Ideally, a good physician approaches end-of-life care as part of health care all along "“ not as a separate conversation (or as a job for an imperial panel). It's part and parcel of treatment.
"What [people] really need is someone who can sit down, turn off their beeper, and not look at their watch every 30 seconds, to listen and provide information," Diane Meier, a palliative-medicine specialist who directs the Center to Advance Palliative Care tells Newsweek.
And of course Caring.com's Melanie Haiken just noted in this blog that receiving end-of-life counseling improves terminal patients' mood and, ironically, quality of life, according to a [new study] (https://www.caring.com/blogs/caring-currents/cancer-palliative-care).
- 3. Tell your relative: "If you want to maintain control, do the paperwork."
Doctors like living wills and advance healthcare directives because it clarifies wishes and helps everyone follow through on hard decisions. At least the healthcare debates present a fresh rationale for getting your loved ones moving on getting their preferences in writing: People who don't want the government (or anyone else) meddling in their final days have a special incentive to do so. Alternately, try appealing to your loved one's sense of duty to others: " You always say you don't want to be a burden to me. Well this will help lift a possible burden down the road. Do it for me."
In a Time interview, geriatrician Laurie Jacobs at Albert Einstein College of Medicine in New York City notes that family members are afraid to limit options for relatives who haven't expressed how they'd like life to end, but are much more comfortable when that conversation has been made clear verbally or on paper.
Also point out to the person that living wills and advance directives can spell out what the person wants," not simply what they don't want.
- 4. Check out hospice before you think you need it.
"Death panels" surely has a sinister ring. Yet mingled within many articles about this feared misrepresentation of proposed Medicare-funded end-of-life counseling is another word new to many Americans "“"hospice" "“ and its connotation is entirely wholesome.
Ideally, more people, not fewer, would know about this wonderful option designed to guide and comfort people at a difficult time. And they would know about hospice before it was needed, as an option to serve the goal of maximizing quality of life. Sounds counterintuitive that a care option reserved for someone nearing death would improve life (for the patient and his or her family) but that's the experience of nearly everyone I know who's utilized it, my own family included.
That people might come away confused about [what hospice is] (https://www.caring.com/articles/hospice-palliative-care) seems to be one of the bigger tragedies of the storm.
On the other hand, the silver lining to the rancor is that at least people are finally talking -- loudly -- about end-of-life decisions. That's big, considering that we live in a culture where nobody wants to think about death, even when they have a relative sliding inexorably toward it.
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