My right to direct my own health care as guaranteed by the U.S. Constitution! State laws do not matter?

I just reviewed another software product that claimed to follow state laws when creating Health Care Directives.  This software is sold by, in my opinion, a well-respected company that used well-respected suppliers, to create the software content. 

NOTE: I am not naming the companies and I blocked out some information from screen shots because my intent is to inform people of the risks, not, in any way, harm the software companies.

So what happen to make me write this blog?  After using the software, I printed out my Health Care Directives document had it this clause:

“I intend this document to be my Declaration under Ohio law. However, if any of my health care instructions go beyond what Ohio authorizes, I request that those instructions be respected and followed in keeping with my right to direct my own health care as guaranteed by the U.S. Constitution.”

So I thought, Wow!  That would be great if a simple sentence like this would solve all the state laws on Health Care Directives issues.  So I did some research and bummer L.

The United States Constitution does not set forth an explicit right to health care, and the Supreme Court has never interpreted the Constitution as guaranteeing a right to health care services from the government for those who cannot afford it. Source

Then I came across this same kind of “don’t worry about state laws” in another software company’s Health Care Directives website that had these messages….

“Someone” that might make this type of claim might be the state Attorney Generals!  Maybe we should ask them – here is the list. 

 

 “Doesn’t follow some rules on the form that you were supposed to use or the signatures of witnesses or notaries that you were supposed to get” – WOW!  The wording is seems to be very defensive and almost childlike.   Instead of taking the time to learn the state laws and provide a solution that complies with state laws, it seems the software developer thinks it is OK to just add a generic statement on the document. 

Can you imagine if TurboTax just stated “in certain states, this data is required and in others don’t have to provide it – you figure it out! 

 This is not about good or bad software companies.  This is about you.

You took the time to have the conversation and document your individual preferences so that your family, friends, and caregivers would not have to go through it without them knowing what you want.  Imagine the stress to your family and caregivers, the people that you care about and the reason why you took the time to write advance care directives, when the provider (EMS, ED, ICU, SNF, LTC) cannot honor your wishes due to a failure to comply with a state law requirement(s) that a software developer simply did not spend the time to put into their software.  All the health care planning goes out the window.  The impact on you personally is “do everything default level of care” and you get aggressive care that you did not want.  The effect on your family and friends and care givers is that now we have to “ask everyone their opinion.”    You do not want your family to go through that level of stress, which is probably higher than if there were never any document created.  “We thought all of this was taken care of” and now the one child that has lived out of state and not been around for over 20 years gets a say in the matter?  FYI – there are specific state laws on who can be your Health Care Power of Attorney.

 If you are a hospital or post-acute provider, will you honor an Advance Directive that does not comply with state law?  If you are an insurance payor, will you pay for aggressive services rendered that where not desired?  How are you going to manage a network that crosses state lines?

On Nov 26, 2014, CMS updated surveyor guidance for advanced directives. F-155, related to advance directives and experimental research, is one of the most heavily revised regulations, including one of the key elements for severity determination for F155 includes “Resident received treatment based on the consent of an individual who was not the resident or his/her representative, in accordance with State Law.”   Source. So the buck stops with you and your employees instead of the software vendors that allowed your patient to create documentation that does not comply with state laws!

Governmental regulations – whether adopted by federal or states – can be daunting and present a profound challenge to the way you do business and manage personal affairs. State and Federal laws change frequently and often with little or no general warning.   It only makes sense that compliance with state and federal laws should be the responsibility of a software vendor, not you and not your employees.

This is my personal opinion

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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?