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The Disconnect Between the Advance Care Planning Needs of the Healthcare System and the Needs of Patients



I recently attended the California Coalition for Compassionate Care’s (CCCC), Physicians’ Orders for Life Sustaining Treatment (POLST) meeting last week.  The room was filled with amazing, caring individuals from around California who are passionate and dedicated to improving advance care planning. The CCCC along with the California Health Care Foundation and California community leaders have made great strides in getting the word out about advance care planning and disseminating POLST forms.

A major theme about advance care planning that kept emerging during our meeting was the large disconnect between what the healthcare system needs (documented forms with check boxes to help direct medical care) and what patients and families need (information about the outcomes of treatment, prognostic information, and support making medical decisions).

Patients often do not think in terms of specific treatments, such as being on a ventilator, but rather what their life will be like after being on the ventilator. Will it hurt? Will I be able to talk to my family? Will I be able to walk out of the hospital? Will I still be able to live on my own?

For some people, the hard part can actually be identifying what is most important in their life at that current moment (how does one do that?) and translating those values and beliefs into an informed medical decision. In addition, these difficult and complex decisions often occur during times of intense stress, in the context of uncertainty, and while dealing with the opinions, hopes and desires of other family and friends.

Most advance directive forms do not provide patients and their families with the concrete skills they need to learn HOW to identify their wishes and verbally communicate those wishes in a way that can affect their medical care. POLST forms, if completed correctly, should allow for a discussion with a clinician who may be able to guide patients and answer important questions about the outcome of treatment. In addition, individual health educators, nurses, physicians, and social workers, etc. (many whom work with the CCCC) are helping to empower patients through communication-based education similar to the successful Respecting Choices model; a model of advanced care planning based on repeated conversations over time. However, a majority of educational efforts have been focused on clinician communication (rightfully so) and less so on direct patient empowerment.

New efforts such as The Conversation Project, advance care planning videos, and emerging advance directive websites have begun to focus on the individual person, and not only on the healthcare environment. The grass-roots efforts focused on empowering individuals, such as those spearheaded by the CCCC, the “direct-to-consumer” videos and websites, along with the help of the media and social media, are what I believe will eventually turn the tide in helping patients engage in advance care planning and will help to bridge the gap between patient and family needs and the needs of the healthcare system.

In the spirit of patient empowerment, we have created a website called PREPARE that may address some gaps that currently available advance care planning materials do not fill. For instance, PREPARE is designed to empower people, through video demonstration, HOW to identify their values, how to communicate their values, how to asks physicians questions, and how to make informed medical decisions that are aligned with their values and beliefs. PREPARE is designed to be completed outside of the medical environment, is written at a 5th-grade reading level, includes videos that model behavior, helps people engage in a step-by-step process of advance care planning, and will be made available for free.

PREPARE will launch January 4th, 2013.

by: Rebecca Sudore

Comments

Diane Meier said…
The great virtue of Respecting Choices (also known as Honoring Choices for its roll out in Minneapolis St. Paul) is its recognition of the need for a systems approach. there is no point in completing advance care planning if people across the health system can't find or see it when it is needed. There is not point in advance care panning discussions if the system is unable to honor the patient's goals- for example to be able to get their care needs met at home, and to avoid the hospital and ED. If you are not hospice eligible, the system cannot honor your goal to get your care needs met at home. all of these things must happen together (ascertain patient wishes; make those wishes visible across the healthcare system; and organize the health system to achieve those goals) if we are truly hoping to improve the most important outcome_ that care received actually matched the patient and family goals.
Anonymous said…
Rebecca: Would you post more information about how Prepare was prepared and its suitability for patients with chronic conditions such as end-stage renal disease?
LC
lewis.cohen@baystatehealth.org
Rebecca Sudore said…
The PREPARE website was designed for people at all stages of illness. It is appropriate for people who are just beginning to experience chronic illness and for people who may be near the end-of-their life. More specifics to come on January 4th when I post a comment about the PREPARE launch.

To Diane's point, I completely agree. Not only is there a disconnect in advance care planning needs between the healthcare system and patients, but there is a huge gap in having this information available at the time it is needed. Respecting Choices has done a fantastic job of integrating this information and is an excellent model. More broadly, I am not sure if the answer will be ACP registries or innovative programs that actually allow this information to be directly uploaded into the medical record. Systems must change, and hopefully giving patients a voice will help in that process.
Judy Citko said…
The answer is all of those things. Advance care planning is - on the surface - a "no brainer." Yet, in reality, advance care planning is one of the more complex aspects of life. It involves psycho, social, emotional, spiritual, cultural, and family dynamics. It calls upon our health systems to be coordinated, deliberate, and compassionate. It calls upon our legal system to provide structure and guidance to a process that is deeply human. And this all happens in the context of imagining or experiencing a crisis.

The Coalition for Compassionate Care is proud to be a part of the effort to inspire new thinking on advance care planning and encourage exploration of new solutions. We are deeply grateful for those who are joining us on this journey!
Anonymous said…
Rebecca - It is a pleasure reading your Post on the POLST Physician Champion meeting held last week. I had the pleasure of sharing with you some gaps and challenges in the end-of-life planning proccesses, as we sat at the same table.

I agree with the thoughts shared by Diane Meier and Judy Citko. I would like to commend the steps taken by CCCC in not only having POLST signed into law in California as an effective end-of-life document that empowers people to have their end-of-life wishes honored, but also, by ensuring that this information is appropriately shared through education and local coalitions, to help its integration and implementation throughout the medical care system. This is one of the better advance planning tools yet but still facing many challenges.

I like what you plan with PREPARE -empowering people with informed advance planning process and filling some of the existing gaps. I would love to learn how you plan to reach out to the general population regarding it's availability, especially to those seriously ill/elderly, who have no access to computers.

Looking forward to PREPARE's launch on Jan 4, 2013.
joshuy said…
While one big issue at the end of life is WHAT does the patient want done, the even more important issues are WHY (the underlying values/tolerances) and WHAT FOR (outcome they hope to achieve). All three issues are important. POLST is great for WHAT. 5 wishes is great at why. The medical literature is terrible at helping people figure out what will be achieved. That's the Achilles heal. Virtually every article needs to be reinterpreted to be clinically applicable for our patients with mixed therapeutic/palliative goals.
Heide Bursch said…
I agree, people who want everything or nothing are easy to support in their decision making (unless the request for everything is futile, and the request for nothing is inconsistent with previously held values and beliefs). It is the people in between, where facilitated conversation is more challenging. Advance care planning through a model such as Respecting Choices needs become the new normal, an expected part of contemporary healthcare, and a responsibility for consumers of healthcare over the age of 18. We are tasked to create the infra structure, make advance care planning culturally acceptable, as painless as possible, and then honor and support it. we are closer than ever!
Anonymous said…
I applaud CCCC for their efforts in educating people on how to identify values, how to communicate values, and so on, and I also applaud programs such as Respecting Choices for their work in teaching counselors to guide patients near the end of life and their families to make and document their treatment wishes, using the OLST paradigms or otherwise. However, most consumers 18 and over don't need extensive counseling, they need a "normalized," simple approach to advance care planning that can evolve as their lives change -- and contrary to what some of the commentators have said, that system/service already exists nationwide. And it's free! There's a service called MyDirectives.com that is available to everyone 18 and over right now. It educates consumers, let's them express their goals and values, treatment wishes, and so on, then stores the document and makes it available 24/7 to doctors around the world -- again, for free!! It even allows users to upload a POLST/MOLST/DNR if they want. Anyone who continues to lament the non-existence of a user-friendly, ubiquitous, 24/7 accessible system/infrastructure has their head in the sand. Go check this thing out - it's changing the world. MyDirectives.com.
Leslie Kernisan said…
Rebecca, congratulations! This is great news and I'm looking forward to the launch.

BTW a professional fiduciary was complaining to me recently about POLST; seems that some PCPs are telling her to complete it on her own, and then they want to sign it. Sad that some physicians reluctant to engage in advance care planning, but maybe PREPARED patients will be more successful in engaging their docs.
Alex Smith said…
Wow Leslie - having patients complete their own POLST, that's pretty concerning! It obviously wasn't designed as such, and as we discussed at the CCC meeting, is written at a graduate/medical student reading level. Scary!
Sonny Vance said…
It's a problem when both providers and patients aren't on the same page. While one side is confined to the medical procedures needed at the moment, the other wants to go ahead and find out what happens after the procedure.

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