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When Advance Directives Are Ignored

When Advance Directives Are Ignored

Do Advance Directive (AD) websites comply with State Laws?

The number of well-intended websites that help individuals and caregivers create advance directives seems to be growing on a monthly basis.   Do these websites create legal documents?

The laws governing advance directives vary from state to state, so it is important to complete and sign advance directives that comply with your state's law.   Also, advance directives can have different titles in different states.  One state’s advance directive does not always work in another state. Some states do honor advance directives from another state; others will honor out-of-state advance directives as long as they are similar to the state's own law; and some states do not have an answer to this question. The best solution is if you spend a significant amount of time in more than one state, you should complete the advance directives for all the states you spend a significant amount of time in.  Source

The AHRQ Report on Decision Aids for Advance Care Planning clearly states “As state law governs almost all issues related to end-of-life care, content of decision aids for ACP should be consistent with a state’s laws and regulations. For example, some states require that in order for a proxy to have authority regarding withholding or withdrawing a feeding tube, that preference must be explicitly stated in a healthcare directive, while other states grant a proxy discretion on that issue. Thus, an excellent decision aid for use in one state may mislead a patient’s effort to document preferences in another state. “

One site, DoYourProxy.org, at least informs / warns users that “Certain states require specific forms and/or specific statements to be included in their advance directive forms, and the forms generated here do not meet these requirements.”

Other sites seem to completely ignore the state law issue and are creating documents that are not legal.

I have also seem the rapid generation of “state forms” that have been copied from site to site, and one that just recently communicated that they now have state forms is using documents created in 2004! State laws change a lot and a document that has not been update for a decade might be at risk.

How do these well intended Advance Directive (AD) websites improve to meet the state law challenge?

 

IE Discipline of the 80s from GMI- classic video

IE Discipline of the 80s from GMI- classic video - This was state of the art in General Motors video production at the time - created by some students to promote Industrial Engineering

Advance Directive Completion by Elderly Americans: A Decade of Change - are the internet postings accurate?

Advance Directive Completion by Elderly Americans: A Decade of Change is the correct report title….but….are the internet postings accurate?

 Dr. Maria Silveira and her team at the University of Michigan Medical School recently published a report in Journal of the American Geriatrics Society, “Record number of older adults completing living wills, trend had little impact on hospitalization rates”

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:

·        Advance Directives More Popular over Last Decade – Source 1

·        More elderly Americans completing advance directives – Source 2

·        Nearly Three-Quarters of U.S. Seniors Have Living Wills – Source 3

·        Many More Americans Issue End-of-Life Instructions – Source 4

·        Record Number of Older Adults Completing Living Wills – Source 5

·        More Elderly Americans Completing Advance Directives – Source 6

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...

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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.

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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.

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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.linkedin.com/in/johncachat

www.directedmedical.com

 

 

Do you have an advance directive or living will? That complies with state laws?

Do you wonder while a hospital or doctor visit, you were asked this question?  The answer is because these organizations where required to asked the question starting in 2011.   In 2016, they will be required to go farther if you answer “yes” – they want access to the document(s).

The reason for this post is that there are several well intended websites popping up to help people create advance directives.  HOWEVER – BE CAREFUL.  I have not found any that deal with specific state laws on this subject.  It would be a real disappointment that if you took the time and energy to create the document, that your wishes were not followed do to a state specific regulation. 

Quality Professionals are Losing the War and the Battle

In my opinion - what do you think?

I recently read a piece where some well-intended quality professionals were asked to explain the difference between “correction” and “corrective action.”  I got a weird feeling.  Why are we even having these discussions? What happen?  The battle is to get Executives to understand the benefits of a robust quality management process in order to support corporate goals and objectives.  It is about increasing revenue and lowering costs and lowering risks.

Back in the early eighties, after spending six years in the automotive industry, I switched to the aerospace industry.   I was pleasantly surprised to see a better approach to quality.  At that time, the automotive industry had a bunch of “tools” that were being randomly applied.  Aerospace had the benefits of military based quality management system processes.  Note for the young people, this is before ISO9000.

The aerospace industry simply defined two steps (reference MIL-STD-1520)

-     Disposition – what should I do to fix the NCM
-        Corrective Action – selective application of problem solving efforts to those areas with the highest potential payback, and always for safety related problems

Then we started doing some dumb stuff.  Someone demanded corrective action for every NCM.   The response was “tool broke, tool replaced” or “operator error, operated trained.”  Anything was written into the form in order to get the parts moving again.   Then, we changed to “immediate corrective action” and “root cause corrective action.”   Immediate corrective action is what used to be called a disposition.   Root cause corrective action is what used to be called corrective action.   Then the FDA started using “corrective action” and “preventive action.”  Corrective action is what used to be called a disposition.   Preventive action is what used to be called corrective action.

If quality professionals do not understand all these terms, how do we expect our Executives to understand them?  What would our Executives think if their financial professionals changed the word profit to advantage, or benefit, or value?  That conversation would be silly and non-value added.  Why not go back to basics and communicate with simple terms.  Terms that you could explain to a high school student.   Terms that an interpreter could explain when presenting to a non-English speaking audience.

What do you think?