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.
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.
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.
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.