Advance care planning by necessity occurs upstream of hospice, but those providers nevertheless have a role to play in helping patients and families understand the importance of making their end-of-life wishes known.
Effective documentation of end-of-life choices has been associated with higher likelihood of hospice enrollment and lower incidence of intensive therapies, even during hospital stays, a 2019 JAMA Network study found.
Not only do these factors have the potential to reduce health care costs, but they can help ensure patients receive goal-concordant care in their final days. Nevertheless, only about 38% of the chronically ill have documented their wishes, according to 2017 research in Health Affairs.
To help move the needle, hospice and palliative care providers can serve as advocates and educators, according to Dr. Dan Morhaim, a retired emergency department physician and Maryland state delegate.
“I think everybody in hospice and palliative care has to be really vocal about this. You have to approach legislators, even though some are going to run in the other direction and are not going to get it,” Morhaim told Hospice News. “If there was a way for hospice and palliative care to connect with people, that would be a big step forward.”
Morhaim has authored two books on end-of-life care and the decisions associated with it: The Better End: Surviving (and Dying) on Your Own Terms in Today’s Modern Medical World and Preparing for a Better End: Expert Lessons on Death and Dying for You and Your Loved Ones. The latter he co-authored with therapeutic nurse practitioner Shelley Morhaim.
Most people in a medical crisis who are not on hospice will head for a hospital emergency department. This is by nature an unplanned event. In his experience as a physician in that setting, Morhaim said that terminally ill patients often receive treatments that are unlikely to benefit them or do not align with their wishes, simply because their doctors have no instructions to do otherwise.
This became even more prevalent during the COVID-19 pandemic when family members were often unable to accompany the patient into the emergency department, intensive care unit or other hospital department.
These factors complicate the necessary communication between families and health care providers regarding advance directives or the patients’ wishes.
Finding ways to give families access to hospice and palliative care discussions on an emergency basis would also yield benefits, according to Morhaim.
“If we can begin to get hospice and palliative care introduced at that point, we have this audience. That’s hard to do. There’s been some pilot programs around that,” Morhaim said. “Clinicians need to say ‘Here’s the various choices we have. Here’s what I perceive the consequences of these choices to be, let’s discuss it.'”
Fragmentation and variation in advance care planning processes are undermining the effectiveness of those services, according to recent research. A range of societal factors, regulatory hurdles and a lack of care coordination between health care settings have erected barriers between patients and services that are aligned with their priorities.
While serving in the Maryland state legislature, Morhaim championed legislation that required advance care plans to be incorporated into patients’ electronic medical records.
Families are often unaware that they need to present the documents in order for health providers to honor them, or they forget to bring their paperwork in the heat of the moment. This kind of integration can go a long way towards bringing patients goal-concordant care.
While other organizations and some state and local agencies have pursued initiatives like the Maryland requirement, no national, standardized approach currently exists.
“Going to the emergency room is on nobody’s schedule. My job for 45 years was restoring some degree of order to chaos and the unexpected and trying to manage that well for people,” Morhaim said. “But I could see that with some patients, if you just did a few simple things a whole lot of what’s going on wouldn’t be happening — conflict in families, people arguing.”
Morhaim pointed to an instance in which an elderly female patient came to the emergency department following a catastrophic neurological event. The family came to the hospital and were in conflict, arguing and tempers were flared, according to Morhaim.
Morhaim noted that the patient had an advance directive. After he discussed the patient’s documented wishes with the family, they were calmed. The arguing stopped, and they began to come together.
Cases like this example demonstrate how advance care plans can be a “gift to families,” Morhaim told Hospice News.
“I always think of that woman because she changed my life. I went home to my wife, and said, “You know that advanced directive things we’re sitting on” We should take care of that now?” Morhaim said. “Because what do we all really fear? It’s pain, isolation, and dependency. Those can be well managed, and the transition can be more holistic and family-centered.”
