Many patients with serious illness receive unnecessary and unwanted care delivered to them at end of life, one of the largest drivers of waste in our healthcare system. A possible response to this problem is advance care planning. Advance care planning (ACP) is a process in which a patient reflects upon their goals, values and beliefs, allowing them to make decisions about their future medical treatments that align with their goals and values. ACP is multifaceted, addressing the patient’s legal rights, who their substitute decision maker(s) will be, and their preferences for future medical interventions.
Most patients with life-limiting illnesses are treated and cared for over a long period of time by a primary care physician (PCP). PCPs can play an important role in helping patients and their families to discuss life-sustaining treatments and to complete advance directives. They are well placed to encourage and engage in ACP conversations and the long-term relationship many patients have with their PCP may be a good basis for initiating timely discussion. However, recent Medicare data shows that only 2.8% of patients actually have a care planning conversation with their physician.
A recurring barrier to these conversations is a lack of shared understanding by care providers and patients about whose role it is to initiate ACP discussions and when they should be best initiated. Recent studies report conflicting views for both patient and provider and in expectations about whose role it was to initiate the ACP discussion. Described as a lack of role clarity, this uncertainty in the doctor–patient relationship is understood as a barrier to ACP. Providers often have concerns about initiating the ACP discussion, not doing so in order to avoid being a source of anxiety or loss of hope and the concerns that initiating ACP discussions too early might deprive patients of hope or create anxiety.
Time pressure to keep up with busy consultation schedules limited PCP’s ability and willingness to initiate time consuming ACP discussions during consultations as well. Creating state-sanctioned Advance Directives is time-intensive and requires attention to legal and compliance issues that clinics are not optimized to support.
Lack of knowledge, skills and confidence in relation to ACP were most frequently cited for healthcare providers not initiating ACP discussions. Lack of PCP knowledge was detailed in a number of studies variously outlining knowledge gaps relating to patient competence, legal considerations, documentation and processes. These conversations can be filled with stress, uncertainty and even conflict.
However, studies show that the patient expectation is that providers should initiate ACP discussions and found that patients were willing to discuss ACP when it was brought up. Patients and families have expressed the desire for earlier and more in-depth discussion of ACP, additional services and support, and improved communication between their PCPs. Additionally, family members of patients who have undergone ACP report decreased stress, anxiety and depression during the bereavement period. ACP has been associated with increased documentation of patients’ end-of-life wishes, and improved quality of care and patient/family satisfaction.
Understanding the barriers and facilitators is important for the development of solutions aimed at facilitating ACP in seriously ill patients. A recent study that focused on the need for the development of an intervention to support the initiation of ACP identified four common features underpinning successful ACP interventions:
- the involvement of a trained or experienced facilitator
- a selection process to identify patients eligible for ACP
- structured and patient-centered ACP discussions
- the opportunity to complete ACP documents
Using an external advance care planning partner whose sole focus is on helping patients complete ACP, is critical in a patient’s care journey. It can make all the difference in their end-of-life experience. Given the sensitive nature of the topic, ACP should be facilitated with care, compassion and experience.
At Iris, our role is to fill those gaps so doctors can focus on patient care. Iris takes ownership of the entire process and champions the benefits of ACP to your patient members and physicians. We take the burden of having these conversations off of the providers and remove the barrier to having these discussions. Our team manages the entire ACP process including member identification, outreach, expert led ACP facilitations and discussions, documentation completion, and distribution of directives to care teams to ensure goal concordant care. Our ACP processes are scalable across populations with no strain on internal provider resources.
We are crafting the future of ACP programs. Working with health plans and other risk-bearing organizations, we analyze claims data to identify qualified candidates for ACP early in their care journey. Our team of trained experts work with these members and their families to deeply explore care goals on an ongoing basis. We document these care goals in full compliance with state and federal regulations, leveraging our own proprietary documentation in this process to ensure members’ unique care goals are described in full. We then distribute these documents to the points of use, ensuring physicians and family members are empowered with the information they need to carry out members’ wishes.