A New Nationwide Patient Safety Concern Related to Living Wills, DNR Orders, and POLST-Like Documents - National Patient Safety Foundation

A New Nationwide Patient Safety Concern Related to Living Wills, DNR Orders, and POLST-Like Documents - National Patient Safety Foundation

Nurse Practitioners Assess At-Risk, Elderly Emergency Department Patients

Nurse Practitioners Assess At-Risk, Elderly Emergency Department Patients and Educate Clinicians on Their Needs, Improving Wait Times, Readmissions, and Patient Satisfaction | AHRQ Innovations Exchange

Do Not Hospitalize orders for nursing home residen...

 Do Not Hospitalize orders for nursing home residents with advanced dementia

geripal.org/2013/10/do-not-hospitalize-orders-for-nursing.html

by: Alex Smith @alexsmithMD

Advanced dementia is a terminal illness needing palliative care. Unfortunately, there is a great divide between this statement of the world as it should be, and the current reality of the world as it is.  Rates of pain and shortness of breath are high for patients with advance dementia.  Patients with advanced dementia often reside in nursing homes, and few nursing homes offer specialized palliative care services.  And, as we can see from an article in this months Journal of the American Geriatrics Society, communication about prognosis and goals of care is still lacking.

In this study, Elizabeth Mann and colleagues asked health care proxies (generally family caregivers) of nursing home residents with advanced dementia a series of open-ended questions about Do-Not-Hospitalize orders.  Hospitalizing patients with advanced dementia is often (though not always) more  harmful, leading to potentially burdensome and painful interventions (feeding tube insertion, needle sticks, restraints). All decisions to hospitalize must be made in the context of the patient's goals and the risks and benefits of hospitalization, and alternative, namely, ongoing treatment in the nursing home. 

A Do-Not-Hospitalize order is appropriate for a patient whose goals are focused on comfort and maximizing quality of life without returning to the hospital.  The health care proxy for every nursing home resident with advanced dementia should have a discussion about the goals of the patient, the patients prognosis, and treatment options.  (Side note: The Minimum Dataset, a mandatory assessment of nursing home quality, records the Do-Not-Hospitalize status for each patient.  I suspect we focus more on this order in nursing homes than in the home setting in part because it is routinely measured in nursing homes.)

Dr. Mann and colleagues interviewed 16 health care proxies.  They found:

• 10 nursing home residents had a Do-Not-Hospitalize order.  None were on hospice.
• Many did not understand what a Do-Not-Hospitalize order meant.  Three thought they had placed a Do-Not-Hospitalize order when they had not.
• Many were not aware that their loved ones with advanced dementia would inexorably decline.

"Right now she's not on physical therapy, which they took her off....She's not walking...She used to walk.  So I would like to get her walking again."

There was also some justifiable concern that a Do-Not-Hospitalize order would mean Do-Not-Treat.  Some people were concerned that the order may be too limiting - that there would be some situations where hospitalization would be appropriate, like for hip-fracture:

"I could not imagine my mother  falling and breaking her hip and not going to the hospital...Because I think that would be very painful for her.  And [it] would be cruel.  And someone could say well what's the difference between having pneumonia and not going to the hospital and breaking an arm and not going to the hospital.  And I don't know that I can answer that except in my mind there is a difference..."

We wrote about this exact scenario in a piece for JAMA Internal Medicine recently - an elderly women with dementia falls and breaks her hip, her advance directive states Do-Not-Hospitalize, but her doctor and surrogate feel hospitalization and surgery give her the best chance of recovery of function and quality of life. (See blog posts here and here with lots of discussion and disagreement about our recommendations)There are two issues here.  The first is the need for doctors to ascertain and document the degree of flexibility or leeway that patients give proxies for situations like this.  For example, "I don't want to be hospitalized for any reason.  Period.  If I break my hip, just keep me  comfortable in the nursing home."  Or, "Let my husband decide.  No one can predict for sure what will happen in the future.  Do I want to stay out of the hospital?  Yes, of course.  But I can't say never."

The second major issue is the suboptimal understanding of health care proxies of nursing home residents with advanced dementia about prognosis and risks and benefits of hospitalization.  In many cases, this misunderstanding results from a proxy-clinician communication failure.

Plenty of room for improvement.

 

Is any Advance Directive better than no Advance Directive?

The international awareness of medical Advance Directives, including the power of palliative care, is a great improvement to the end of life process.  But, “Is any Advance Directive (AD) better than no Advance Directive? “   It probably depends on what you are trying to accomplish with the AD.

The number of well-intended websites that help individuals and caregivers create advance directives seems to be increasing on a monthly basis.   The majority of these websites focus on the critical initial conversation regarding what is important to you during your end of life.  The idea is that the more an individual shares about their desires, their wishes, the less stress and anxiety by the family, friends, and caregivers.  Great.  Do these AD documents result in less stress and anxiety and a better end of life? 

What is an AD?

End-of-life planning usually includes making choices about the following:

·        The goals of care (for example, whether to use certain medicines during the last days of life)

·        Where you want to spend your final days

·        Which treatments for end-of-life care you wish to receive

·        What type of palliative care and hospice care you wish to receive

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

Recent studies have found that there are several key steps to the Advance Directive Process and several life stages that they impact.  Let’s discuss life stages first, as the process is significantly different depending on where you are at because the tools to support the AD process vary depending on where a patient falls on this spectrum:

Healthy -> Potential Life Threatening -> Life Threatening -> Hospice -> End of Life

For a healthy person at the left end of this spectrum, tools regarding goals of care may be considering decisions for comfort versus improved function/rehabilitation versus life prolongation, and the choice of a proxy decision maker(s) who can communicate these values. These tools involve making decisions for hypothetical health states the person has not yet experienced. People who have not experienced a serious event may have a tenuous understanding about the health states for which decisions are being made. These decisions differ from end-of-life decisions because they require people to imagine what life would be like under various conditions of disability, whereas within end-of-life decisions, the patient is directly experiencing the alternative to death.

Based on my research, the majority of website AD tools are designed for healthy people and they produce some great documents.  However, a recent email I received stated that “even if the AD is completed, known, and even accessible (miracle to this point I know) – Is it CONSUMABLE to the ED (Emergency Department) practitioners?  10 page narrative paper or PDF documents are not always very helpful to the busy clinician…. especially if they are at the point of considering life-saving / extending procedures.”   Does this means is that if we do not produce an AD document that is usable by the Emergency Department then it is the same as one does not even exist?

I am very concerned.  What do you think?

Truven Health Analytics Healthcare Blog: Reducing Readmissions Must be Addressed Across the...

Truven Health Analytics Healthcare Blog: Reducing Readmissions Must be Addressed Across the...: A lot of attention has been given to hospital readmissions in recent years, and the establishment of a readmission outcome measure by the ...

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...

 ------------ 

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.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?