Meeting the needs of the terminally ill and their families represents an immediate and persistent challenge for health care providers. America’s aging population is magnifying the complexity of this challenge. Nearly 20 million baby boomers are expected to die in the next 15 years—an average of 1.3 million annually1—most suffering from multiple chronic conditions that complicate the balance between longevity and quality of life.
“The enormity of the problem, and the complex web of interrelated issues associated with any attempt to address it, put us at risk of systemic paralysis unless we can change the tone of discussions from shrill to measured,” said Tom Robertson, executive director, Vizient Research Institute.
Taking a first step in changing the tone was the ambition behind an end-of-life symposium sponsored by Vizient in partnership with the Santa Fe Institute (SFI) held on March 23, 2017 in Chicago. A group of more than 40 stakeholders broadly representing health systems from across the country (as well as organizations outside of the health care industry) attended the event.
Three overarching themes emerged from the provocative discussions facilitated by six distinguished thought leaders, each of whom covered various issues surrounding end-of-life care:
- Difficult conversations between patients, their families and physicians, if they happen at all, often occur too late
- In our culture and our health care system, death is equated to quitting
- Solutions to the end-of-life dilemma are more likely to emerge from grassroots (bottom-up) initiatives than from top-down regulatory efforts
Difficult conversations with patients, family and physicians
During the symposium, the participants explored the concept of the quality of a death, framing the struggle to balance longevity with dignity.
“There is frequently a lack of connection among terminally ill patients, their families and medical professionals around facts and expectations,” said Robertson. “When asked, most terminally ill patients express a preference to die at home instead of in a hospital, yet the majority of deaths occur in hospitals, often in the intensive care unit.”
There was agreement among clinicians in attendance that as patients decline, it often becomes difficult to accommodate their desire to remain at home, particularly if they lack a strong and available family support system. There is a wide gap between what patients want at the end of life and what they get...and that gap needs to be narrowed by having those difficult conversations earlier.
Death equated to quitting
Other discussions during the symposium focused attention on an underlying psychological issue related to end-of-life care. Many patients and their families (and a significant number of medical providers) view death as a failure. Human nature likes to win and hates to lose. Palliative care and hospice services are often viewed as throwing in the towel; death is equated to losing. Some physicians adopt a “not on my watch” perspective that reinforces the predisposition toward care that can become extraordinary or disproportionate.
The Medicare payment system also contributes to the psychology of giving up by establishing a sharp line of demarcation between life-prolonging care and the hospice benefit. To qualify for hospice benefits, Medicare patients must formally forgo curative treatments, which establishes or reinforces the image of giving up in the minds of patients and families.
Grassroots solutions to the end-of-life dilemma
During the symposium, Gundersen Health System’s advanced care planning efforts were highlighted as a unique grassroots initiative that has significantly impacted end-of-life care in their community. As a result of their 25-year initiative, more than 95 percent of seniors in southwest Wisconsin complete advance directives during their last two years of life; medical providers abide by those directives more than 98 percent of the time.
The “why” in rationalizing end-of-life care must be mission-based, not economically motivated. Four lessons emerged from the experience in La Crosse, WI:
- Conversations and relationships with terminally ill patients are essential, and the discussions must begin long before an ICU stay or hospitalization occurs
- Each advance directive is highly personalized, and everything does not begin or end with the physician; success involves community resources and caregivers, including clergy
- A common set of questions leading to a standardized advance directive document was critical to the program’s success, but the process for engaging each patient and their family was unique and intimate
- Accessibility of records is a necessary condition; the integration of electronic medical records enables broader adoption
At the conclusion of the symposium, there was agreement that changing Medicare payment regulations can catalyze change in how people view end-of-life care, simply by eliminating barriers to progress. However, changing policy will not ensure success. The heavy lifting occurs at the local level — with medical providers, patients and their families.
“It is unlikely that we will be able to develop a process where care is objectively measured and ’optimal’ care is determined and delivered for every situation,” said Robertson. “Instead, we should redefine success as an incremental increase in the frequency with which the care delivered matches patient preferences and values.”
To access the full proceedings from the symposium, click here.
1 U.S. Census Bureau 2012 National Projections