Patients who inform their loved ones and health care providers of their end-of-life care wishes find that those goals are carried out 90% of the time, according to recent research in the Journal of the American Medical Association Network Open.
Studies show that advance care planning can reduce hospitalizations by as much as 26%, reduce health care costs, increase community-based palliative care and hospice utilization, as well as significantly increase the likelihood that care will be delivered in accordance with the patient’s wishes.
“There is a common perception that people don’t often document or tell others about their end-of-life wishes,” said lead author, David Glass, research scientist at the Kaiser Permanente Southern California Department of Research & Evaluation. “Our research showed that people shared their end-of-life wishes and that those wishes are typically met here at Kaiser Permanente Southern California.”
Glass is also a lecturer in the Department of Health Systems Science at the Kaiser Permanente Bernard J. Tyson School of Medicine.
Researchers surveyed 715 family members of Kaiser Permanente members age 65 or older who had died. Respondents indicated that 94% of decedents did not receive unwanted treatment, and 89% had their end-of-life wishes met. These results were consistent whether patients chose to end their life in hospice or to continue to receive high acuity curative care. About 84% percent of the decedents included in the study had an advance directive in place.
“We found it particularly interesting that 83% of next-of-kin reported that their loved one received the right amount of care,” Glass said. “In short, neither ‘overtreatment’ nor ‘undertreatment’ was perceived by most of those who responded to our survey.”
Through advance care planning, patients make clear their wishes and goals for end-of-life care and communicate that information to their clinicians as well as their families. Advance care plans also typically include the patient’s designated surrogate who can make health care decisions in their stead should the patient become incapacited.
While the Kaiser Pemanente patients had a high rate of advance care planning utilization, more work is likely needed to foster adoption of these services in the larger health care space. Despite the benefits of advance care planning, many patients don’t pursue it or pursue it too late. Only 14% of patients with serious illnesses have advance care plans. Patients who choose to receive palliative care are the most likely to have a plan.
Public perceptions of advance care planning, as well as a lack of understanding of the nature of hospice and palliative care, have many reluctant to pursue these options, according to a 2020 study in the Journal of Palliative Medicine.
Efforts are underway to educate the public about the importance of advance care planning among health care providers, policymakers and advocacy groups. Last year, federal lawmakers introduced the Compassionate Care Act, which if enacted would establish a nationwide public education campaign to educate the people in the United States about the importance of advance care planning. The bill also includes grants and pilot initiatives to educate students in medical, nursing, social work and other related fields about end-of-life discussions and care.
Emerging value-based payment models such as the value-based insurance design demonstration, often called the Medicare Advantage hospice carve-in, Primary Care First and direct contracting also have components designed to promote advance care planning.
The Kaiser study also found that patients and families that incurred the highest health care costs at the end of life reported lower satisfaction than those with lower costs.
“We discovered this higher-cost group had died at a younger age than the lower-cost group,” Glass said. “So, it may well be that the dissatisfaction of the high-cost group reflected a disappointment that despite all the efforts and costs, death came earlier than was expected.”