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 "The Best Care Possible" - new book 
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Joined: Fri Aug 11, 2006 1:46 pm
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Post "The Best Care Possible" - new book
This recent New York Times article is about a new book, "The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life," by Ira Byock, MD. The author of the short review says: "What makes Dr. Byock’s book particularly valuable is the chance to eavesdrop on the doctors we’re often quick to blame. He tells what it’s like on the other end of the stethoscope." The reviewer is "most appreciative of [Dr. Byock's] front-line insights into the way medicine operates at the end of life."

One take-away from this book must be that we all need to have advance directives or we may suffer the fate described of the family matriarch in the ICU whose niece objects to stopping all treatment as "letting her die [when] only God can take a life." Apparently most Americans do not have advance directives.

Robin



http://newoldage.blogs.nytimes.com/2012 ... by-degrees

The New Old Age Blog: Caring and Coping
The New York Times

The Caregiver’s Bookshelf: Dying by Degrees
By Paula Span
March 20, 2012, 4:25 PM

Ira Byock has been writing books about the way Americans die since 1998, when he published “Dying Well.” For most of that time, he has been appalled.

He still is. Dr. Byock, director of palliative medicine at the Dartmouth-Hitchcock Medical Center in Lebanon, N.H., pulls no punches in his new book, “The Best Care Possible: A Physician’s Quest to Transform Care Through the End of Life.” The American way of dying, he points out, involves too much suffering for both patients and families, and routinized medical response with not enough individualized care. It means not enough listening, not enough support for families, way too much expense. “A national disgrace,” the author calls it in his introduction.


Sun Mar 25, 2012 6:01 pm
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Post Re: "The Best Care Possible" - new book
Quote:
Apparently most Americans do not have advance directives.
That is an interesting fact and I wonder if there is a regional disparity. When I opened a case [as a home health RN-case manager] in WA or AZ, one of the initial questions on the admittance form involved whether or not they had advanced directives and where they were located. I would estimate that at least 90% of my patients had one, most with a copy at the hospital and a copy with their PCP. Most of my patients were seniors and it was the younger patients who tended not to have them.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Mar 25, 2012 6:43 pm
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Post Re: "The Best Care Possible" - new book
So you folks got me curious and I tried to pull some literature on advance directives.
J Am Ger Soc 2004 reported a study in Cleveland that found fewer than half the older adults had an AD, with whites, unmarried adults, and younger folks (in the 65-90 age range) more likely to have one.
In NYC about the same time (Arch Int Med) the rate was about a third; similar rates across Hispanic, African American and white groups.
Maybe more relevant for us: Am J Ger Psychiatry published a study last year in people with mild cognitive impairment (longitudinal, over 5 yrs) and found only 39% had AD's by 5 years into the study. Again, younger people were more likely than older.
I would be very interested in regional variations but the most recent study I could find in a quick search was in J Am Ger Soc in 1999 in nursing homes and found substantial variation, from 10% to 69%. Oregon had very high rates; the abstract didn't say where the lowest rates were.
A Harris poll put the rate at about 40% in 2007 (NY Times article).
AHRQ reports that there has been little change in the AD rate, and also that AD's have not been all that successful in changing practice, perhaps because they are not getting into the medical record. http://www.ncbi.nlm.nih.gov/pmc/article ... ool=pubmed

I would be particularly interested in changes in attitudes over the last few years. I wonder to what extent the often-toxic political rhetoric about "death panels" may have set back efforts to get people to consider AD's and their own personal preferences.

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Mon Mar 26, 2012 10:55 am
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Post Re: "The Best Care Possible" - new book
Laurel,

My experience is merely anecdotal, of course, but in my estate planning (law) practice here in the Midwest, I have found over, say, the past 10 years that clients are more interested than ever about advance directives and HCPOAs. I have never heard any concerns about "death panels" or the like. The Terri Schiavo case in Florida generated a lot of concern and interest several years ago, as I recall.

I'd say that the breakdown is something like 30% of my new estate planning clients already have them, 20% don't have them but after discussion they want them, and the other 50% don't have them but know about them and are actively seeking them as part of their planning. Most of my estate planning clients are age 50 and up. I cannot recall a single occasion when a client did not have them and did not want them after I explained these documents to them.

My state's department of human services has forms for financial and health care POAs, advance directives and directives for disposition of human remains, which are prescribed by state statutes, available on line and most hospitals and many clinics I know of have hard copies of the forms available. So citizens do not need to retain an attorney to prepare them, though the forms are somewhat basic and attorneys can draft their own. I do believe that a lot of people use the state forms so at least they have something.

Julianne


Mon Mar 26, 2012 11:42 am
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Post Re: "The Best Care Possible" - new book
Hi Julianne,
That's encouraging! I guess, though, that people who consult an estate planner probably are a little more sophisticated in long-term planning issues. (Everyone in my immediate family over the age of 10 or so has all imaginable documents and copies placed in medical records, but my shirt-tail cousins in TX, not so much.)

I agree that the Terri Schiavo case served as a real reminder of the potential conflicts and tragedies if people have not made their wishes (whatever they might be) known and put in writing. I think the "death panel" hoo-ha generated a lot of fear among people who weren't well informed, but it may also have prompted some people to be more pro-active about making their wishes known. Again, this is anecdotal in the medical world, too.

The survey data suggest, though, that wider awareness has not fully translated into increased communication and use of AD's and other documents into medical practice, at least as of the most recent published data. I'd really be interested in learning more specifics about perceived and actual barriers, and how those may have changed.

Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Mon Mar 26, 2012 1:12 pm
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Post Re: "The Best Care Possible" - new book
Laurel,

I have practiced in the big city and now am in a very small, rurall town and would characterize myself more as a country lawyer, not an estate planner. The people who come to me for the most part are just plain folks, not especially sophisticated, yet a lot of them have done at least HCPOAs and advance directives and the ones who haven't are quite receptive.

Terri Schiavo used to be my teaching tool but these days, it seems I hardly have to go into case examples. Pretty much everyone gets it. I believe that there is a much, much better general awareness than there was, say, 15-20 years ago when one really had to explain these concepts.

All I can say is that I thank my lucky stars that my mother's planning documents were in order before she began to decline. Now she is in an SNF and the staff there takes her healthcare POA very seriously. I am her agent and they call me about absolutely everything, and my substituted judgment on the issues is accepted unquestioningly.

That seems to be the general experience of my clients whose planning documents have been activated and used. At least around here, the medical community definitely gets it, and the hospitals all encourage the implementation of HCPOAs and advance directives upon admission for those who don't have them yet (assuming competence).

Julianne


Mon Mar 26, 2012 2:43 pm
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Post Re: "The Best Care Possible" - new book
Hi Julianne,

That is really heartening! I'm glad to hear that active planning has become so much more widely practiced beyond the coastal metropolitan high-education communities who show up most often in our AD research. The medical literature has not fully caught up with this, I think - maybe really a fast-moving trend? We have been trying so hard to help raise awareness about planning for healthcare decisions, and about the problems when people become cognitively impaired. Maybe it is finally taking off. I think some of the medical shows on TV are helping, too. (I say this as someone who basically never watches TV but gather that more shows have turned on such questions.)

Both of my parents have been in hospital and SNF in the last 3 months, and I was pleased to see that everyone in both settings asked about advance directives and medical POA and so on. My dad is fully cognitively intact and my mom relatively early in course of LBD and can carry on a decent conversation. But we have all the paperwork in place, and they gave me HIPAA clearance long ago. It has certainly made care easier in emergency situations, and it is a comfort as we face the uncertainties of their future, with one 96 and one 95 years old. Sounds like you are farther down that path, but prepared (as much as one can be.)

Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Mon Mar 26, 2012 6:46 pm
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Post Re: "The Best Care Possible" - new book
PS, I meant to say they have been in hospital briefly and then in SNF for a while, each, but thank goodness our geriatric whack-a-mole session is on hold for the moment, everyone at home and healthy for now.

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Mon Mar 26, 2012 6:48 pm
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Post Re: "The Best Care Possible" - new book
The author of "The Best Care Possible," Dr. Ira Byock, was on NPR's "Talk of the Nation" show today.

You can listen to the 30-minute interview here:
http://www.npr.org/player/v2/mediaPlaye ... =149397438

Here are some points Dr. Byock made in today's radio interview: (Dr. Byock made one point about hospice that I've never heard made before. See item #5 below.)

1. "[It's] always too soon until it's too late."

2. "[Patients] and families...don't like to talk about [dying]. You know, in fact, if there's one sentence that sort of encapsulates our orientation toward illness, dying and death, it's I don't want to talk about it. But in fact, since we're mortal, again, not talking about it just...leave[s] us less prepared and leaves our families less prepared."

3. "[Doctors] hate to make people cry. And it sounds funny to say, but in fact I've seen so many good clinicians...who are reticent to tell somebody that their disease is incurable or to actually say, yes, Joe, I think at this point we can say you're dying, or to say your mother is dying and actually say it that clearly, because it makes people cry."

4. "[Hospice] really is the gold standard of care through the end of life, and too many people are getting it too late. Even though hospice usage is expanding, the length of service on hospice care continues to fall. Right now, it's down to 19 days, median. [Hospice] is increasingly not doing end-of-life care. We're really doing brink-of-death care."

5. "[It's] not enough in America to be dying to get hospice care. Under Medicare, at least, you have to also agree you are dying. ... And you have to be willing to forego treatments directed at your disease and intended to help you live longer. Now, that either/or choice, which really keeps people in the acute care system longer than many - is in many of their best interests when they would have absolutely accepted hospice care if they could continue to get cancer care or care for their congestive health failure, that choice is not imposed by some principle of clinical therapeutics or by some principle of medical ethics. It's solely imposed by a line in the Medicare statute that created the hospice Medicare benefit. It's not even part of hospice, quote, unquote, 'philosophy.' .. We know that hospice, when it's given with active disease treatment, not only improves comfort, but lengthens people's lives. Studies have now pretty clearly shown that. We know that concomitant hospice care with disease treatment actually decreases costs during the last six months of life, because the more confident people are of getting their needs met at home, the less likely they are to want to come back to the hospital. But that statute keeps us dividing what should be a smooth continuum of care."

6. "[There] are worse things than having someone you love so much die. There's having them die badly, suffering as they die. And maybe the only thing worse than that is looking back and realizing in retrospect that much of their suffering was unnecessary."


The last caller had a great question about how difficult it is for families to sign a "do not resuscitate" order, and unfortunately the host of the show asked Dr. Byock a question about the healthcare act, which meant Dr. Byock didn't answer the question about DNR orders, etc.

You can read the transcript of the 30-minute interview here:
http://www.npr.org/2012/03/26/149395633 ... nd-of-life

And you can read an excerpt from the book here:
http://www.npr.org/books/titles/1491659 ... pt#excerpt

That's it!

Robin


Tue Mar 27, 2012 1:42 am
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Post Re: "The Best Care Possible" - new book
Thanks for posting this, Robin. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Mar 27, 2012 8:26 am
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Post Re: "The Best Care Possible" - new book
The 30-minute interview is worth listening to.


Tue Mar 27, 2012 11:40 am
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