Ellen Dalton, chief marketing and customer experience officer at Medecision, and Shoshana Ungerleider, MD and founder of End Well, discussed mortality and personal empowerment at Medecision’s annual Liberation conference in October 2019.
Few people enjoy talking about death and dying—for many people, the topic seems morbid or depressing. But that’s something that Shoshana Ungerleider, M.D., wants to change. “Dying isn’t a medical issue,” she says. “It’s a human issue, and it needs to be talked about.”
That’s why Dr. Ungerleider founded End Well, a social movement that aims to bring together people from all walks of life to ignite more conversations about how we live and how we die.
At Medecision’s annual Liberation conference in October 2019, Dr. Ungerleider sat down with Ellen Dalton, chief marketing and customer experience officer at Medecision, to discuss how to normalize conversations about death and serious illness; foster a stigma-free perception about death; and educate patients on their choices like advance directives.
Dalton kicked off the session with a personal anecdote. She shared how her own father had unexpectedly died 30 years ago, recounting her family’s feelings of confusion and frustration at the situation. Then, she revealed how she felt those same emotions when her father-in-law passed away five years ago after a long battle with Parkinson’s disease.
“As someone who works in the healthcare industry, I had an almost existential crisis,” Dalton told the crowd. “Twenty-five years had passed—and yet this situation hasn’t changed. We still feel confusion and frustration and even anger about death.”
From there, Dalton and Dr. Ungerleider discussed how End Well is working to encourage conversations about serious illnesses, caregiving, grief and loss, and the end-of-life experience—and how to ensure that people can experience a dignified end of life that matches how they lived life in full health.
“I believe most people have a very low bar when it comes to healthcare, unfortunately,” Dr. Ungerleider said. “Often, people aren’t getting care that’s in line with their goals and values, and it doesn’t honor the life that they have lived.”
Surveys show that 80% of Americans want to die at home, but only about 20% actually do, Dr. Ungerleider said. The rest are dying in hospitals, nursing homes and other facilities, and about 30% of patients spend their last days in the intensive care unit. “About 60% of patients are actually dying in pain, meaning their pain symptoms are not adequately controlled. We, as an industry, really have to do better,” she added.
So how can the healthcare industry improve the end-of-life experience and palliative care? Dr. Ungerleider shared these four tips with the Liberation audience.
- Put patients at the center. The healthcare industry is incredibly siloed, Dr. Ungerleider explained. Doctors speak to doctors. Insurers speak to insurers. Policymakers speak to policymakers.
“But no one seems to be talking directly to patients and their caregivers,” she said. “It’s incredibly important that we listen to the people whom we are serving and keep them at the center of the conversation—bringing them to the table as a stakeholder from whom to learn.”
- Educate patients on advanced care planning. Ungerleider shared how Gundersen Health System in La Crosse, Wisconsin, started a grassroots advocacy campaign in the mid-1980s to ensure everyone in the town had filled out advance directives, a legal document that outlines an individual’s wishes for end-of-life medical care. By 2008, 90% of La Crosse residents had an advanced planning document on their medical record. The documents proved to be effective: In a 2010 study published in the Journal of the American Geriatrics Society, researchers revealed that among the adults who died during a seven-month period from 2007–2008, the care that they wanted almost universally aligned with the care they received.
Dr. Ungerleider explained that leaders at Gundersen Health System leveraged the faith communities and churches in La Crosse to get members of the community to complete advance directives. “While this type of grassroots campaign may not work in a larger city, it’s a great example of how a siloed healthcare institution can look at their community and say, ‘Who can we partner with to effect change?’” Dr. Ungerleider explained.
- Support palliative care. “I’m a generalist by training, but I’m also a palliative care activist,” Dr. Ungerleider said. Palliative medicine is an interdisciplinary team-based approach aimed at improving quality of life and reducing suffering among those with serious, complex illnesses. People in palliative care live longer and cost the healthcare industry less money, Dr. Ungerleider suggested.
Research says the same: In June 2018, JAMA Internal Medicine published a meta-analysis of six studies and revealed that healthcare costs were lower for patients seen by a palliative care consultation team rather than for patients who did not receive this type of care.
“The news that palliative care can significantly improve patient experience by reducing unnecessary, unwanted and burdensome procedures, while ensuring that patients are cared for in the setting of their choice, is highly encouraging,” said study author Peter May, M.D. “It suggests that we can improve outcomes and curb costs even for those with serious illness.”
Dr. Ungerleider added that healthcare institutions should support palliative care on both the inpatient and outpatient side too.
- Offer communications training to physicians and clinicians. The majority of physicians have not been trained in how to have difficult conversations with their patients. In fact, in a 2014 article in The Ochsner Journal, Joel D. Marcus, PsyD, and Frank E. Mott, M.D., wrote that “Many clinicians may have difficulties with, or in the worst-case scenario, avoid delivering bad news and discussing end-of-life treatment.”
However, they write, “Communication during the course of an illness is often impeded because clinicians have not been taught the necessary skills. Practitioners currently receive little to no formal training on how the information they provide to patients must change at different times in the treatment trajectory.”
Healthcare organizations need to be funding this type of education for their physicians and clinicians, as well as incentivizing it, Dr. Ungerleider urged.
Ultimately, Dr. Ungerleider insisted that death doesn’t have to be a depressing topic. “It’s part of the life journey,” she said. “We need to be able to talk about it.”