Health care is deeply personal and the way we receive care is not, and should not be, set in stone. For example, I recall a time when talking about organ donation was sensitive and disturbing to many people, but our culture has changed. People now consider the topic much more routinely, and health care providers are ready to discuss and answer questions about the process.

Momentum is building for us to expand this level of comfort to all aspects of advance care planning—identifying and communicating about the care we want during serious illness and at the end of life, care that is in sync with our personal goals and values.

We need to encourage and accelerate that momentum, which is why I am so pleased that The John A. Hartford Foundation and our partners at the California Health Care Foundation and Cambia Health Foundation can offer a new contribution to all of the good work happening in this area. Today, we released a new report titled, “Conversation Starters: Research Insights from Clinicians and Patients on Conversations about End-of-Life Care and Wishes.”

Working with PerryUndem Research/Communications, we commissioned six focus groups about advance care planning made up of clinicians (general practitioners, internists, oncologists, cardiologists, pulmonologists, nurse practitioners, and physician assistants). A seventh focus group was conducted online, composed of 31 racially and culturally diverse adults age 40+ who have an advance care plan and talked with a health care provider about it in the last five years.

The focus groups build on results from a national poll the three foundations supported in April. Several important and interesting findings came out of these groups:

  • First, providers and consumers both noted important differences between “early” and “later” advance care planning conversations in the health care setting. Early conversations are often brief and transactional, and can be relatively easy discussions between clinicians and healthy patients. Clinicians and patients both agreed that these conversations should happen early in life, in someone’s 20s and 30s.
  • Advance care planning conversations that occur after diagnosis of a serious illness or in later stages of life, as might be expected, were reported as much more difficult and emotionally challenging for both patients and clinicians. They require a combination of sensitivity and directness, according to the focus group participants. Notably, clinicians emphasized that having an earlier, documented advance care plan in place is the #1 way to start up a more difficult later conversation about end-of-life care.
  • We also heard that many early advance care planning conversations are occurring outside the health care system. Many consumers in our focus groups said they first started thinking about these issues with their lawyers and financial planners. This raises interesting implications for how to connect these conversations back to the health care system. Access to legal and financial advisers is also something that is not common to people at every socio-economic level.
  • Clinicians said that automated reminders and integrating advance care planning conversations into routine care would be useful. Patients felt similarly and also wanted very practical help, such as having staff available to assist them in completing forms.
  • Clinicians acknowledged the value and expertise brought by other health care team members, including social workers and palliative care teams. The clinician participants reported a desire for more training and opportunities to learn from each other, particularly about how to handle the more difficult later conversations. This idea was seconded when we asked clinicians questions about talking with diverse patient populations.
  • Discussions about end-of-life and serious illness care are now reimbursable through Medicare. While our earlier national survey (“Conversation Stopper”) showed that a large majority (74 percent) of physicians said this payment would make it more likely for them to have these conversations, our focus groups revealed an important caveat. Most of our clinician participants reported that the new payment code is too administratively burdensome and they have so far been foregoing the extra payment. This raises a potentially important area for policy improvement going forward.

Our earlier survey also showed that almost half of physicians said they often feel unsure of what to say when discussing end-of-life care, and only a third reported having any formal training or systems in place to help them. The focus groups were a way for us to delve deeper and expand our understanding of those findings, and they pointed us to other important questions and implications, such as:

  • How do we make advance care planning conversations a routine part of care for younger, healthier patients?
  • How do we connect early advance care planning conversations with later ones to make the entire process more clinically and personally meaningful?
  • How do we integrate the advance care planning conversations that are happening in other settings into the health care system?
  • How do we improve later advance care planning conversations (at times of serious illness or later in life) to make them easier and more effective for patients and clinicians?

On our webinar earlier today, we were fortunate to have Ellen Goodman of the Conversation Project as a respondent to the findings from the consumer perspective. Ellen, a Pulitzer Prize-winning journalist who has passionately taken on this issue, was joined by Susan Block, MD, from Ariadne Labs, who has done amazing work to help clinicians have higher quality conversations about serious illness and end-of-life care.

We encourage you to listen to their responses on our webinar recording about what they found important, surprising, and useful from these focus groups. We hope you will share your responses with us as well in the Comments field below.

Together, we can improve advance care planning and the many other aspects of quality care for older adults and everyone facing serious illness or the end of life.

For more information, including the reports, press releases, webinar slides and recordings for both the focus groups and the poll, please visit: Improving Advance Care Planning: Research Results from the “Conversation Starters” Focus Groups and “Conversation Stopper” Physician Survey