Advance Directive Completion by Elderly Americans: A Decade of
Change is the correct report
title….but….are the internet postings accurate?
I reached out to Dr. Silveira for her thoughts as well….
What caught my attention was the various related internet
postings on the report, for example like:
My concern is using the term Advance Directive (AD) and Living
Will (LW) and End-of-Life (EOL) Instructions interchangeably maybe confusing
the public, and is some of internet postings may be providing quotes that are
not entirely accurate.
The Silveira et al 2014 report defines the terms as
follows:
- Living Wills
(LW)as “written instructions about the treatment or care decedents wanted to
receive during the final days of their lives.”
- Advance
directive (ADs) as “summarize preferences for life-sustaining treatment and
surrogate decision-maker in the event that one loses decisional capacity and
requires medical care.” Note: I think the use of the word “and” is
important.
- Durable Power Of
Attorney For Health Care (DPAHC) as “any legal arrangements for a specific
person or persons to make decisions about the decedent’s care or medical
treatment if he or she could not make those decisions him or herself.”
So unfortunately, the AD and LW are not the same thing, and if
these article headlines are using them as if they were the same, what else did
they get wrong?? Well let’s take a look...
------------
Quote
- An advanced directive is “anything you prepare in advance of your death,”
according to lead study author Dr. Maria J. Silveira. – from Source 1
Not Accurate
– The definition for an advance directive from the report is stated
above. This may have been from an interview, but I doubt it from someone
like Dr. Silveira, based on the thoroughness of the report.
------------
Quote - The recent study found that most
people both appointed a surrogate and left their treatment preferences
known. – from Source 5
Not Accurate
– So according to the report’s definition of an AD – “summarize preferences for
life-sustaining treatment and surrogate decision-maker”
Here is the actual information from the report – “Of
those with AD data,
- 63% had some kind
of AD before death
- 45% had a LW
- 57% had a DPAHC
- 38% had
both"
So let’s look at the numbers again
- 63% had
some kind of AD before death – what does “some kind” mean? Versus
definition provided in the report
- 45% had a LW -
Not an AD
- 57% had a DPAHC -
Not an AD
- 38% had both - This
might an AD, if both meets the report’s definition, assuming the term both
reflect the “and” requirement. The public’s confusion may come from the
reference to “most people” as stated in Source.
It would also be helpful to clarify what the reference to “some
kind of AD before death” means.
------------
Quote - The percentage of seniors with living wills -- also called
advance directives -- increased from 47 percent in 2000 to 72 percent in
2010 – From Source 3
Accurate sort of… See the use of the terms living wills and advance
directives as the same thing? That is inconsistent with the report’s
definitions. The report does quote the 72% number, and here is the
quote “The proportion of decedents with an AD increased from 47% in 2000 to
72% in 2010.” Now I am getting confused. The report references
63%, 45%, 57%, and 38% numbers - but I could not figure out how the 72% number
is being calculated.
------------
Quote -
"There has been a significant increase in rates of AD completion over the
last decade, but this trend has had little effect upon hospitalization and
hospital death, suggesting that AD completion is unlikely to stem
hospitalization before death" – Source 6
Accurate
– the report further states that “Future research will need to examine how
trends in ACP (which stands for advance care planning) affect trends in
hospitalization and place of death” and “it seems unlikely that that a piece of
paper summarizing one’s wishes for surrogate decision-maker and life-sustaining
treatment would have a large effect on one’s likelihood of being hospitalized
or dying in the hospital. To stem hospitalization rates, the decisions to
hospitalize, die in hospice, or die in the hospital must be addressed more
directly.”
So if the expectation was a reduction in hospitals deaths,
what happen? Here is what I think. If 57% only had a DPAHC,
then no DPAHC is going to say, “Do not send Mom to the hospital.” My
Associate is an Emergency Department (ED) doctor and states he sees this every
day, no matter if they are at home, at a SNF, in hospice – regardless – the
default is call 911 and send to the ED. He stated not having immediate
access to AD or LW document in the ED causes him to do CPR and “break their
ribs,” or other care that is not necessary or desired, and the documents are
rarely available.
Silveira et al 2014 report has a sample size of 6,122 from
Health and is HRS Retirement Study (HRS) participants who died in a hospital
between 2000 and 2010 and were aged 60 and older at death. According to Dartmouth Atlas of Health Care, 829,827, Care of Chronically Ill Patients
during the Last Two Years of Life, died in a hospital in 2010. The CDC reports for the 60 and older at death in 2010, as
1,969,117 deaths. So only 42% died in the hospital? Maybe ADs are
working…? Not sure based on these numbers.
The part I did not understand from the report is “It may be
that Advance Care Planning - ACP conversations in which individuals are given
the choice not to be hospitalized and provided with the appropriate support to
safely and comfortably stay home (e.g., with hospice) are much more likely to
affect hospitalization rates than ADs are; programs incorporating ADs into a
comprehensive program of ACP show that to be the case.” My understanding
of the ACP, AD, and LW is that the choice not to be hospitalized is part of
that process. What am I missing?
Final Thoughts
The study also provides several comments that might be important
for public reading these internet postings.
Silveira et al 2014 report states “Retrospective proxy
reports were relied on for the outcomes of interest, and this raises
concern regarding the accuracy of the data. Proxies who may also have
been the decedents’ surrogate may have been psychologically driven to report
greater concordance between the person’s wishes and the outcomes of
decision-making, and because many proxies were surveyed more than 12 months
after the subjects’ deaths, their responses are subject to recall bias.”
Think about it. A year after your Mom died, who would want
to tell someone, “No, I did not do want Mom wanted. I did not follow Mom
wishes.” The author’s clearly states it in the report, but the internet
postings do not discuss this fact.
The report also states:
- Those looking to
reshape end-of-life care should create systems that promote advance care
planning (ACP)
- Future research
will need to examine how trends in ACP affect trends in hospitalization and
place of death
Some things to consider:
- Advance Directive
Completion by Elderly Americans is probably is not really 72%
- Those looking to
reshape end-of-life care need to address the following:
·
A business process to
educate, create, store and retrieve, and maintain specific medical directives
tailored to each person’s unique medical wishes, including “Do Not Hospitalize”
and the concept of time, for example, do this for a week, then stop.
·
If sent to the ED,
regardless if from home, at a SNF, in hospice, the documents that prevent
breaking people’s ribs with aggressive care that is not desired. Output
that is immediately available in the ED, that is clearly “legal &
official.”
·
Compliance with all
State and Federal laws – the generic ACP websites that exist today do not
appear deal with the annoying differences between states and it is very
frustrating to spend all the time and energy on ACP, only to be ignored because
the paperwork is not correct
- Ongoing research
data needs to be able to capture non-hospitalization end of live events.
How do we get the data of the people with ADs that did not get
hospitalized?
- Ongoing research
efforts need larger data sets. It would be great if the researchers could
have access to 100% of the data on all end-of-life events. This is not
intended to debunk the professional use of statistical models in this
report. It is intended to challenge the healthcare IT professionals and
the State and Federal government on creating a data source for
researchers. Great news that Feds Seek To Expand Open Data. This would eliminate the non-value added
time spent by researchers trying to qualify, find and munge patient data and
spend more time with analysis and insight. We need a real cool
“data input” engine. We also need the ability to dynamically mash-up
different geographic regions, health episodes, etc. in a
visualization/analytics environment.
Dartmouth Atlas of Health Care states “More than 80% of patients
say that they wish to avoid hospitalization and intensive care during the
terminal phase of illness, but those wishes are often overridden by other
factors” and “If more intense intervention does not improve life expectancy,
and if most patients prefer less care when more intensive care is likely to be
futile.”
My passion is helping the aging get the best care possible at
the end-of-life. Please contact me if you want to discuss this issue.
John M.
Cachat
President
and CEO
Directed
Medical Systems
C
440-915-2650
www.directedmedical.com
