De-Stressing End-of-Life Care NOW (Whatever Healthcare Reform Brings)

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 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. (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.
- 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 seems to be one of the bigger tragedies of the storm. (The AP offers a useful Fact Check on the debate here.)
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.
De-Stressing End-of-Life Care NOW (Whatever Healthcare Reform Brings)


Thank you so much for your article. You explained it in such a way that felt your compassion for your parents. I have written several articles that I'd like to share: http://www.examiner.com/x-20416-Virginia-Beach-Elder-Care-Examiner We must help each other. The reality is: Each one of us will either become a caregiver, or need to have someone care for us. We cannot excape it! Please live a posting on the site. By the way, hospice helps not only the dying, but most especially the living family members. I would not have made it without them.
FIRST OF ALL-REGARDING HEALTH CARE REFORM-BE SURE TO FOCUS ON FACT AND NOT RUMOR. BE VERY CAUTIOUS NOT TO FALL PREY TO RUMOR AND MEDIA HYPE. BEFORE YOU REACT, GET EVERY FACT! Advance directives put the patient in control. Be sure to not only have it in writing-have a conversation with those you have designated to speak on your behalf to ensure that they know what your wishes are. Hospice philosphy can offer a beautiful experience to all. I too have "done it both ways" (i.e. lost loved ones tragically & suddenly vs. under Hospice care. I'll take Hospice any day!) Each of us will face death some day. Why not make it loving, reflective,and appreciative of the human being you are caring for.
Thanks for helping sort out things. Although I feel only those of us facing end of life issues sees this information. Looks like when nothing else would get the american public off the proverbial couch health care reform did and about time too.
ms Mad Dog - I interpreted the comment a bit differently, to mean that real life is not similar to TV life. I don't think the implication was that nurses don't care or that one should not bother with CPR!! I believe the message was not to buy in to the hollywood representation of end-of-life, don't delay putting your wishes in writing and discussing your desires.
So the percentage of 70 and over don't survive CPR, is it Nurse Sara who would decide because of age don't bother?? Heaven help us old folks because a lot of young people would go with the don't bother routine.