I remember a patient I was managing when I was a young family medicine physician. The patient had heart failure with a significantly diminished left ventricular function. I saw him monthly as did our cardiology team. His plan was daily weighing with modem transmission to intervene early in the event of weight gains, light exercise, dietary interventions, serial echoes, and an evidence-based medical regimen. He had recurrent hospital stays when his home diuretics weren’t sufficient. On one of his admissions, he developed an unstable arrhythmia that prompted cardioversion. This was done by a cardiologist who had recently joined our group. 

I remember he called me directly on my cell phone. He said to me, “This is a patient with an extremely low ejection fraction, recurrent hospital admissions, on maximal medical therapy and now I’m shocking him…” 

“Yes,” I said, “…and?” 

He then said to me, “Have you ever had a conversation with him regarding his wishes, his prognosis, and what we are going to do as his disease invariably progresses?” 

I hadn’t. 

That was many years ago, but it was a wake-up call for me. Since that time, and a number of additional missed opportunities, I have become a fierce advocate for advance care planning, and identifying the right time and the right way to have these conversations so we are honoring patients’ wishes, and doing the right and appropriate intensity of care according to patient preferences. This is the intention for our new End-Of-Life Care Program – to help foster the necessary skills for non-palliative care clinicians to have the right conversation, at the right time in the right way. 

Why are End-of-Life Care Conversations so Important?

There is a desperate need for advanced care planning conversations in medicine. In a study of over 163,000 Medicare patients admitted at least once for a chronic and advanced disease, only 46.8% were admitted into hospice in the last 6 months of their lives. However, those admitted into hospice had significantly better pain control, fewer hospital deaths, fewer ICU deaths, lower hospital days, and a greater patient experience. In other studies, hospice patients lived longer than matched non-hospice patients by avoiding the risk of over-treatment, receiving additional monitoring only available via hospice, and increasing their desire to live by focusing on what matters to patients.

A 2019 study assessed the timing of hospice enrollment for 904,000 patients who died between July 2018 and June 2019 and found:

• Only 7% of eligible patients were referred to hospice for an optimal length of time.
• Patients who received hospice services for less than 2 months were 5 times more likely to visit the ED during the last month of life than hospice patients who had longer lengths of stay.
• Patients who enrolled in hospice during the last 3 to 6 months of life consumed an average of $23,600 less in healthcare costs than patients who received no hospice.
• A sizable majority of people say they want to die at home, but 60 percent die in hospitals or institutions.

Despite worthy progress on Advance Care Planning, there remains significant opportunity to improve conversations, planning, and providing care at the end of life. 

So Why Aren’t We Having These Conversations?

Data gathered from primary and specialty physicians continue to make the case for earlier and more effective Advance Care Planning. A survey of over 700 physicians revealed: 

• Three-quarters believe it’s their responsibility to initiate end-of-life conversations, yet…
• Fewer than one-third reported any formal training on end-of-life discussions with patients and their families.
• More than half said they had not discussed end-of-life care with their own physicians.
• Most physicians find initiating conversations regarding the end of life difficult, and many report simply not knowing what to say.

Unfortunately, the consequence is that end-of-life planning becomes akin to a game of “hot potato,” with no one doctor taking the responsibility to begin the process with the patient and family. Too often, the conversation gets pushed aside and delayed until the patient has already experienced a health crisis, at which time it may be too late to engage in deliberate, detailed planning. We get into this cycle where it’s easier and more instinctive to monitor symptoms, perform medication titration and disease-focused visits whereas honest, compassionate, and timely end of life conversations are deferred until a crisis develops. By avoiding the conversation, a patient may have received treatment that they would not have wanted or died in a manner and place they would not have preferred. 

Based on input from our advisory board and numerous member organizations, we are proud and honored to launch the End-of-Life Program designed around the specific and prescriptive approach to prognostication, initiating conversations, harvesting patients wishes, advancing family alignment, reducing guilt associated with hospice referrals, hospice criteria and delivering care with hospice teams. 

Our hope is these skills land in the hands of all of our member organizations to advance the skill, consistency and compassion of end-of-life care from the front-line clinician perspective.  There’s no greater priority than honoring patient wishes as they approach death, and we are hopeful this program can help to close the notable gap that remains.