Ninety percent of patients say it's important to talk with loved ones about their end-of-life care, but less than 30 percent have actually done so.
This is according to The Conversation Project,(theconversationproject.org) which the Academy has now partnered with to offer family physicians and their patients resources to better prepare them for end-of-life care discussions.
In 2010, Pulitzer Prize-winning journalist and author Ellen Goodman started The Conversation Project after not getting the opportunity to discuss end-of-life care with her mother, for whom she was caring, which led to Goodman having to make difficult decisions about her mother's care.
Goodman partnered with media, clergy and medical professionals dedicated to helping people discuss their wishes for end-of-life care. The project, in collaboration with the Institute for Healthcare Improvement, provides guidance to patients about having conversations with their loved ones and physicians about end-of-life care decisions.
- The AAFP has partnered with The Conversation Project to offer family physicians and their patients resources to better prepare them for end-of-life care discussions.
- The Conversation Project starter kit is a free, downloadable resource available in multiple languages that is intended to help individuals start to feel more comfortable having end-of-life care conversations with their loved ones early on.
- The project website also offers personal stories of people who have dealt with end-of-life care and how the opportunity, or lack thereof, to discuss this care ahead of time affected the experience.
Harriet Warshaw, executive director of The Conversation Project, told AAFP News family physicians need to know that patients could really use their guidance in end-of-life care discussions.
"People really look to their health care providers to begin these conversations, and yet we know that most physicians don't bring it up," she said. "Also, people want to have these conversations when they are healthy and not in a crisis mode. Patients want to have a calm conversation with their clinician and their family members. To me, this is the essence of what family physicians do -- so I say, take it and run with it."
The Conversation Project Starter Kit
According to Warshaw, The Conversation Project Starter Kit(2 MB PDF) is a great tool to kick off these end-of-life care conversations. This free, downloadable resource is available in multiple languages(theconversationproject.org) and is intended to help individuals start to feel more comfortable having end-of-life care conversations with their loved ones early on.
"It's meant to help caregivers and clinicians better understand the values of their loved ones and patients," she said. "So when a patient can no longer speak for themselves -- which half of the people entering the hospital at the end of their lives can't -- clinicians and family members have a basis to create goals of care consistent with people's values."
A patient can decide what level of care they prefer -- from aggressive curative care to comfort-only care -- and this decision can be made before a crisis event occurs. The kit also allows patients to choose the level of information they'd like to receive from medical staff about their condition, share their privacy preferences and decide which family members and friends they would like to be involved.
"This gives people control of how they're going to live at the end of their lives," Warshaw said, "rather than leaving the care they receive to chance."
Warshaw said, for example, a family physician could hand a patient in his or her 40s a starter kit and tell them to take it home, fill it out and on the patient's next visit, they could discuss it. "Very often, what happens is you start talking about this for yourself at 40 and think, 'Gee, I better have this conversation with my parents, as well,'" she said. "Or, if you're older and have adult children, the reverse happens."
According to Warshaw, the starter kit also could be integrated into normal assessment tools. "This should just be another opportunity to get to know your patients better," she said. "And when a patient comes back for their next checkup, this conversation then gets documented in the medical record."
It's important to note that physicians can get paid for these conversations using two advance care planning codes (99497 for the initial 30-minute conversation, and 99498 for each additional 30 minutes).
Additionally, The Conversation Project offers starter kits for patients on how to talk with physicians,(theconversationproject.org) as well as for families with a loved one who has dementia or Alzheimer's disease.(theconversationproject.org) The group also has a starter kit for families with a critically ill child.(theconversationproject.org)
Additional Project Resources
The Conversation Project's website features a Community Resource Center(theconversationproject.org) with a wide range of materials that include community organizing tips, resources for faith communities, information on hosting events and publicity materials.
The website also offers a particularly critical support resource: a collection of personal stories(theconversationproject.org) of people who have dealt with end-of-life care and how the opportunity, or lack of, to discuss this care ahead of time affected the experience.
Warshaw said she was fortunate that she was able to have had end-of-life care conversations with both of her parents, and as a result, was able to honor their wishes. "And yet I had a brother who died of AIDS, and he was not able to have this type of conversation with me, and it was a very different experience," she said.
On the project's website, Warshaw shared her story of end-of-life care for her mother, who battled various cancers for 30 years and eventually succumbed to emphysema. Warshaw said her mother wanted to die with dignity.
"I knew she wanted us to be with her when the end was near," Warshaw said. "In the last few weeks of her life, I was at her bedside sharing stories, reading to her and just being present. It was a time of serenity and pure joy, sharing such private and intimate moments.
"As she drifted in and out of consciousness, she would open one eye and look at me and smile. In one of her last lucid moments, she said to me: 'Make sure you help others die as graciously and with such compassion as I am -- that is your challenge.' And with a smile on her face, she fell back to sleep."
At the end of January, The Conversation Project will launch a new free toolkit on how to pick a health care agent.
"After having the conversation with a physician and family, the most important thing is appointing a health care proxy or agent -- someone who will speak on your behalf if you aren't able to speak for yourself," Warshaw said. In many states, the process of designating a health care agent requires a legal document.
"So people ask, 'How do I choose someone to be a proxy?' And many health care agents ask, 'What are the responsibilities of being a health care agent?' This starter kit helps people answer those questions," she said.
"I hope family physicians become our active partners in normalizing this conversation and ensuring their patients feel accompanied throughout and at the end of their lives," said Warshaw. "We know that people look to their physicians for this type of support, and anything we can do to help doctors feel comfortable bringing this up and not waiting for patients to do so, we're ready to help."
Related AAFP News Coverage
Health is Primary Campaign Focuses on Caregiver Health
Family Physicians Work to Support the Support System
More From AAFP
Policy on Ethics and Advance Planning for End-of-Life Care