A Catalyst for Culture Change in End-of-Life Care

Mark D. Smith, MD, MBA, CHCF Founding President and CEO

What is the right level of care? There is lots of evidence that the answer is not always "more," even for gravely ill patients. At CHCF we try to be a catalyst in establishing mechanisms to afford people a louder say in what they want.

February 2011

What is the right level of care? There is lots of evidence that the answer is not always "more," even for gravely ill patients.

Amy Berman of the Hartford Foundation found this out when she was diagnosed with a dangerous form of breast cancer that had spread to her spine. In a moving essay, Berman describes visiting a nationally renowned cancer expert for a second opinion. The visit was an eye-opening disappointment — the physician recommended aggressive treatment that even he admitted would not be likely to extend her life. He never asked her what she wanted to do.

It is not possible for any foundation, particularly one with resources as modest as ours, to ensure that Californians each get just the right amount of care. But at CHCF we try to be a catalyst in establishing mechanisms to afford people a louder say in what they want. This is especially true for gravely ill people who, ironically, often get more medical interventions thrown at them in their final days than they ever might have wanted.

In part this is because the inevitably of death is not as easily accepted in a society that is rightly proud of amazing scientific accomplishments that prolong life. It's also due to a health care system that rarely asks patients what they want. Yet without these conversations, and a way to document them, patients can end up on a runaway medical train, undergoing ineffective, unwanted, painful, and expensive treatments while their psychological, emotional, and spiritual needs are poorly addressed.

To help patients have their say if they are unable to speak, CHCF has supported the use of Physician Orders for Life-Sustaining Treatment (POLST). Developed in Oregon two decades ago, POLST is a standardized medical order form (in California it is printed on bright pink paper) that indicates the specific types of life-sustaining treatment a seriously ill patient does and does not want.

What makes POLST powerful in California is that, unlike a health care directive, it is signed by the patient and physician and becomes a set of medical orders. And unlike the directive, which is often in a drawer somewhere when it is needed most, the POLST form moves with the patient as part of the medical record and must be honored across all settings of care. Currently, 32 states have implemented POLST or are developing similar programs.

Early Exploration

In 2007, the foundation dipped its toe in the water when we made a grant to the Coalition for Compassionate Care of California to develop a strategy to introduce POLST in California. This included the formation of a statewide task force representing providers, consumers, regulators, and advocates, as well as finding local communities and real patients to test POLST.

The community coalitions brought together local nursing homes, emergency services, and hospital providers. They encountered issues common to spreading a new idea — including making sure doctors and nurses were educated about POLST and were comfortable talking with patients about such decisions, and verifying that the POLST form completed the circuit from nursing home to hospital and back.

In Alameda, Santa Clara, and San Diego Counties, new coalitions formed. For many, it was their first opportunity to meet as a group. In Monterey, Riverside, and Santa Cruz Counties, where the local community had been grappling with improving end-of-life care longer, POLST was a natural fit with existing activities. Now more than 25 community coalitions focus on POLST implementation. We are gratified that many are led by local medical societies.

The task force also sought to learn from our neighbors to the north. While POLST is the standard of care in Oregon — 96% of nursing homes routinely use the POLST form, and EMS providers are trained to ask for it — this level of adoption took 20 years to achieve. Given the size of California's population, a similar community-by-community approach to spreading POLST might take 200 years to achieve.

Legislative Approach

Many advocates concluded that a supportive policy environment was a critical factor in accelerating the adoption of POLST in California. For example, the form had to be honored across settings of care. Providers had to feel confident that if they honored a patient's valid POLST form, they would be protected from liability. And patients needed to sign the form; while completing a POLST form is completely voluntary, there had to be assurances that it represents the decisions of the patient accurately.

Advocates pushed for the passage of AB 3000, which became law on January 1, 2009, and accomplished these goals. Thanks to passionate clinical champions who praised the value of POLST at legislative hearings, the bill went through several committees without serious opposition, finding support in every area of the provider and consumer landscape.

The Importance of Education

The next step was helping providers build skills and confidence in initiating the POLST conversation. As a practicing physician, I know these conversations can be difficult. Most doctors were not trained to have them; they can be emotionally trying and time consuming, often over many meetings with a patient; and they are not explicitly paid for by anyone.

The foundation invested in educational programs and communications tools designed to create a consistent message and approach to prepare doctors, nurses, and other health care professionals to have these vital conversations. Under the continuing leadership of the Coalition for Compassionate Care of California, more than 400 health care professionals in California are now training their peers on POLST in clinical scenarios. In addition, the task force is building infrastructure to hardwire POLST into the health care community, including developing model policies and procedures for hospitals, nursing homes, and hospices.

To meet the critical need for online resources, we've funded development of a California POLST website with educational materials for consumers and providers, including the POLST form in six languages and Braille.

POLST is one of several investments CHCF has made in this area. Others involve developing palliative care programs in public hospitals and improving care toward the end of life for nursing home residents.

Lessons Learned

These experiences promoting POLST have made clear some key lessons:

  • There is a way to have a thoughtful and reasonable conversation about end-of-life care.
  • Focusing on respect for an individual's choice can bring people together.
  • It takes passionate champions to wrestle with the human, legal, legislative, and industry issues.
  • It takes time.

Reflecting on Amy's experience (and those of countless others), getting to a place where these conversations are the norm requires a change in culture and systematic supports for that change. Acting as a catalyst for culture change is one contribution that a foundation like CHCF can make to improve health care for all Californians.

Reader Comments

POLST serves well the wonderful goal to strive for the wanted intensity of treatment if the decision faced is Life-Sustaining Treatment in the face of terminal medical illness.

POLST does not, however, deal with prolonging the process of dying for years, as in Advanced Dementia. Then, it may be possible to stop only "Comfort Feeding Only." While this term sounds nice, Assisted Feeding can get aggressive: puree can be placed at the posterior tip of the tongue to evoke a swallowing REFLEX.

Why not ask for informed consent for Assisted Feeding, just like for CPR? The best time: if the patient still has decisional capacity. Second choice: from fully informed surrogate decision-makers.

Currently, POLST in California offers no check box along with this unqualified statement in Section C: "Offer food by mouth if feasible and desired."

May I ask: How is "feasible" defined? Who decides "desired"? Do we need another form for those who are worried about Advanced Dementia?

...continuing (I violated the "1000 char max").

I now work in HIT Adoption with one of the RECs (I live and work in Vegas, but I have one foot in CA owing to my wife's work and our 2nd residence in Walnut Creek). Part of the HITECH Act Meaningful Use program is the inclusion of "advance directives" as requisite EHR functionality for ONC-ATCB certification (e.g., §170.306 (h) Advance directives, to wit, “More than 50 percent of all unique patients 65 years old or older admitted to the eligible hospital’s or CAH’s inpatient department (POS 21) have an indication of an advance directive status recorded as structured data”.).

Very interesting. I've thought about and had to deal with these issues for a long time, as next-of-kin/caregiver, beginning with my late daughter's protracted cancer struggle in L.A. in the late 1980's.

Then it was on to Mom and Pop. My Dad went down in cardiac arrest on Sept 12th 2001 (the day after "9/11") down in Florida where they were living in retirement at the time. EMTs couldn't find a DNR (he had one; I found it years later in a spare bedroom drawer, while cleaning out their house to put it up for sale, having moved Ma to assisted living). Pop subsequently languished in dementia-addled bewilderment in long-term care until he finally expired in 2008.

I'd moved them both to Vegas in 2007. Had to get all new DNR paperwork on both of them (and Guardianship of Pop). My mother, now 89, has been in long-term care for more than 3 years. Every time there's some "call-the-POA" episode I have to ask "you ARE aware of the DNR in her chart?" lest they run her off to the ER.

I am a very passionate advocate for end of life treatment and education to make sure that the clients I work with have this discussion and the forms in place. There is a wonderful book by Dr. Dennis McCullough, My Mother, Your Mother. It's a poignant book about 'less is more', intervention, and when to stop the hooplah of medical procedures. There is a time to weigh one's time left with how one wants to 'spend it'. I am hopeful that the POLST form will provide more continuity of care in honoring how a person wishes to live out those last days.

Beautiful piece. Yes, the question should not be "how much" but "what?" I always tell my patients I will do everything I can that will help. The real question, especially when there are only burdensome or ineffective treatments left, is "what are the choices we can make that will most help you achieve your goals?" Then, after we understand your choices, let's be more sure they will still be honored after you are transferred to another setting by completing the POLST form.