Palliative Care (PC) is not an easily digestible term for most of us. The Center to Advance Palliative Care (CAPC) found that in 2019, public opinion and physician understanding of PC had not changed much over the past decade despite significant growth and milestones achieved by this field of medicine. Physicians have retained a particular confusion around what PC can offer patients. The CAPC survey revealed that physicians are still not able to accurately articulate when to refer to PC; oftentimes, palliative care physicians (palliativists) are asked by our colleagues to simply “do what we do” when it comes to seeing a new patient.
This begs the question, “What happens within a palliative care encounter?” Very frequently, people assume it’s pain management, or more broadly, symptom management. However, if this were true, the typical PC visit would be much shorter. For comparison, in the clinic setting, it is common for primary care doctors to be able to see 10-12, or more, patients in a half-day session. For palliative medicine clinics, that number is reduced by half to just 4-6 patients per-half day.
What happens in a palliative care consultation?
The bulk of time spent in PC is on advance care planning (ACP). The largest PC and care planning study in the U.S. to date examined over 70,000 inpatient encounters from approximately 80 health systems across the country and found that ACP was the reason PC was consulted over 70% of the time.
Setting goals of care through ACP requires intense foundational work to support the patient in making informed, meaningful care decisions. ACP should, if the patient allows, include family members, loved ones, or other stakeholders in a person’s care. Oftentimes, it is these other participants that act as a sounding board for a patient as goals are formed and then evolve over time. Proactively bringing these stakeholders into the process avoids unnecessary conflict and confusion later on.
With the right people at the table, palliativists also assist in disease education. Regardless of how well educated or resourced a person is, it’s unlikely that their healthcare literacy around their illness is adequate. Before defining care goals, palliativists must first walk patients through what is likely to come in the months or years ahead with their serious illness.
Even still, this education is not enough. It’s important for the palliativist to understand how the patient thinks and makes decisions. In the face of serious illness, elements such as spirituality, culture, personal finances, and family dynamics drive decisions. This information is not typically found in claims data or electronic medical records. Indeed, healthcare professionals often avoid these topics all together — yet they are critical in being able to think through what the future might look like for the patient. This is why ACP is a highly-individualized process that can’t be distilled down into a specific treatment pathway.
From there, we walk through scenarios that the patient will likely experience given their specific illness(es) and disease trajectories. These scenarios should include the full scope of issues that the patient and their family will potentially face in the future — not just those that come up around a decision to enroll in hospice. These decisions need to be documented within the advance directives (ADs). The ADs then need to be distributed widely and easily accessible such that they are available at the point of care.
But the ACP process still doesn’t end there. ACP often can be a recurring conversation, and the ADs need to be “living” documents. It is expected that as an illness evolves, so do patients’ goals, choices, and preferences. It is the duty of the palliativist to resurrect the concepts previously agreed upon when significant clinical and social changes occur. In this way, ACP becomes part of the care model rather than a separate process and is a driver for PC to be a longitudinal service.
In sum, PC is so much more than just symptom management. During a typical visit, palliativists will:
- Set goals of care with patients and their family members, identifying key influencing factors along the way
- Provide education about patients’ illness(es) and their upcoming care journeys
- Support patients in making scenario-based decisions about care preferences
- Document patient wishes in an AD and distribute them such that they are available at the point of care
Expanding access to ACP
ACP is the “procedure” in the field of PC. It is why our encounters are time intensive, but it is also the force that, when combined with symptom management, produces the outcomes we all have come to expect once PC gets involved. Indeed, it wasn’t until very recently that data became available in peer-reviewed journals that demonstrated that ACP delivered by a non-palliativisit could yield similar results as a full-service, in-person PC service.
One such study from Stanford found that lay health workers trained in ACP for cancer patients could yield lower emergency department visits, fewer hospital stays, and reduced total costs while boosting patient satisfaction scores. These outcomes are promising when you consider the opportunity to scale this solution to help the growing number of people in need. As palliativists are in short supply, other models of delivering high-quality and consistent ACP — such as third-party partners — deserve consideration.
To speak with Dr. Bekanich and explore how Iris can help you expand ACP to all of your members, get in touch with us today.