Analysis of the NEJM Catalyst Insights Council Survey on Palliative/End-of-Life Care. Qualified executives, clinical leaders, and clinicians may join the Insights Council and share their perspectives on health care delivery transformation.
By Amy Compton-Phillips and Namita Seth Mohta
Our NEJM Catalyst Insights Council survey on palliative care reveals an interesting dichotomy: While the great majority of organizations have a palliative or end-of-life care program, 60% of patients who would benefit from such services don’t receive them.
“Palliative care helps patients live their best lives with the time they have left, and hospice care helps patients have the death they want consistent with their values. Palliative care should be as ubiquitous as hospice care within the health care industry. If 60% of patients who would benefit aren’t receiving it, there’s a real disconnect,” says Amy Compton-Phillips, MD, Executive Vice President and Chief Clinical Officer at Providence St. Joseph Health in Seattle and NEJM Catalyst’s Care Redesign Theme Leader.
The efforts of health care providers, says NEJM Catalyst Clinical Editor Namita Seth Mohta, MD, “should be focused on improving access to these critical services for the patients who need them.” Across the board, Insights Council members — a qualified group of U.S. executives, clinical leaders, and clinicians who are directly involved in health care delivery — quantify the impact of palliative care as a net improvement. Nearly all respondents (97%) say palliative and end-of-life care boosts patient experience, along with quality of care (94%), clinician work satisfaction (88%), and cost of care (79%).
“Patients understand that the circle of life includes death, and survey after survey shows that patients want to be in control of their lives, maintain autonomy, and retain dignity until the end. Technology’s ability to prolong death has challenged this and the [health care] industry is feeling the struggle more acutely,” Compton-Phillips says.
The survey finds that nonprofit health care delivery organizations are well ahead of for-profit organizations in the maturity of their palliative care programs. For instance, a higher incidence of respondents from nonprofit organizations (60%), compared to those from for-profits (36%), report that their program has been in existence for more than six years.
An important factor in scaling up palliative care services is the alignment of payment incentives, according to Mohta. She believes that value-based health care will support broader implementation of palliative care.
Compton-Phillips agrees. “We have data that shows palliative care costs less and increases patient satisfaction. When we start paying for outcomes rather than inputs, access to palliative care should change rather quickly,” she says.
The palliative care field faces significant challenges, including a shortage of skilled, trained providers. While nearly half of the survey respondents say finding and hiring trained palliative/end-of-life care specialists is difficult, just over a third report that retaining them is equally challenging.
One way to address this challenge is to integrate appropriate palliative care services into primary care, Mohta says. For example, many primary care physicians now routinely prioritize goals of care conversations with their patients (for which some payers now compensate providers). This goal goes a long way toward aligning treatment decisions with patient values, but Mohta would like to see efforts like these even more integrated in primary care settings and given adequate resources. Survey respondents are a bit bolder, with a third saying primary care providers should deliver the majority of palliative/ end-of-life care and 77% ranking additional training for primary care physicians as their number-one suggested area of investment.
Insights Council members have seen success with fellowships, mentoring, and train-the-trainer programs to learn about pain treatment and other palliative care skills. In a written comment, one clinical leader respondent says, “We have recently received a grant to educate primary physicians on palliative discussions and had a program on the basics of the conversation at our annual staff meeting. There has been significant increase in awareness of the value of these conversations.” Another clinical leader says his community hospital “offers a Palliative Academy to train non-palliative clinicians in communicating with families.”
To expand access to palliative care services, some health care organizations are turning to technology, using telemedicine, artificial intelligence, and other advances to fill gaps in human resources. It’s a move that makes Compton-Phillips wary. “Yes, we need to match the demand, but we also need to keep the compassion in care,” she says.
She and Mohta recommend that health care organizations involve patients in the development of palliative care programs. Only 16% of respondents cite patient involvement in the development of their programs.
Ultimately, palliative and end-of-life care has the potential to reshape health care. One clinician reports that “Having advanced palliative care in our organization has been transformative. The patients receive better care, the physicians have gained a new skill set, and the organization is a more just place to work.”
VERBATIM COMMENTS FROM SURVEY RESPONDENTS
What type of palliative/end-of-life care program at your organization has had the most impact, and why?
“Dedicated team of trained physicians, advanced practice clinicians, social workers, clergy, nurses and support staff — available 24/7/365 — major impact on patient and family satisfaction with symptom control and goal setting.”
“Having a palliative care specialist direct care policy for continuity’s sake.”
“Largely, hospital-based palliative care/end-of-life, but we are now moving to the nursing home setting.”
“Inpatient palliative care because that is all we really have. We need outpatient palliative care. Problem is staffing, training/education, physician engagement and business model.”
“Having advanced palliative care in our organization has been transformative. The patients receive better care, the physicians have gained a new skill set, and the organization is a more just place to work.”
Download the full report for additional verbatim comments from Insights Council members.
Charts and Commentary
by NEJM Catalyst
We surveyed members of the NEJM Catalyst Insights Council — who comprise health care executives, clinical leaders, and clinicians — about palliative and end-of-life care. Respondents were asked about the start of their organizations’ palliative/end-of-life care program, the position in charge of their organizations’ palliative/end-of-life care program, and the extent of patient involvement in their organizations’ palliative/end-of-life care program. The survey also explores the impact of palliative/end-of-life care, providers of palliative/end-of-life care, the average percentage of patients who would benefit from palliative/end-of-life care, the difficulty in hiring, firing, and retaining palliative/end-of-life care specialists and staff, and additional palliative care services provider organizations should invest in. Completed surveys from 572 respondents are included in the analysis.
Respondents from nonprofit organizations (85%) outpaced respondents from for-profit organizations (64%) in indicating their organization has one or more programs for palliative or end-of-life care.
More than half of respondent organizations have had palliative/end-of-life care programs for more than six years.
There is a higher incidence of respondents at for-profit organizations who indicate that the Chief Medical Officer (16%) or clinical leaders (13%) are the positions in charge of palliative/end-of-life care programs, compared to nonprofit programs, at 4% and 6%, respectively.
Patients are more involved in developing palliative/end-of-life care programs at for-profit organizations (45%) than nonprofit organizations (24%), respondents say.
Download the full report to see the complete set of charts and commentary, data segmentation, the respondent profile, and survey methodology.
Join the NEJM Catalyst Insights Council and contribute to the conversation about health care delivery transformation. Qualified members participate in brief monthly surveys.