Addressing End-of-Life Care Misconceptions With Advance Care Models
By Mayank Shah, MD, FAAFP
Our population is quickly aging. According to the US Census Bureau, the number of individuals older than age 80 will nearly double in the next decade.
We also face a declining number of doctors focusing on palliative care for patients with serious illness. To adequately care for this population, we’ll need a significantly larger number of providers who are able to administer effective care as patients face the end of their lives and focus on compassionate symptom and stress relief.
A holistic care approach, which has been shown to provide significant value for patients, can provide the attention and support patients and their caregivers need to navigate serious or terminal illness as they face their end-of-life journeys.
Designed to treat the whole person, a holistic care approach is considering an individual’s physical, psychosocial, existential, and behavioral needs while ensuring their goals and desires remain at the forefront. Having those conversations as part of the primary care process well before a patient faces either serious illness or a terminal diagnosis can help ensure that treatment is appropriate, adequate, and cost-effective.
The typical approach to end-of-life treatment puts resources in place to support the patient’s journey only during the last six months of life as part of hospice treatment, requiring the patient to give up on treatment to focus solely on comfort.
In contrast to hospice, palliative treatment allows for a different approach, which can begin at diagnosis and provide the patient with more options. There can be significant value in evolving clinical guidelines and models focusing on quality of life, and taking into account the patient’s wishes by creating a highly interactive approach to managing patients’ complications and symptoms.
Cultural Misperceptions Around End of Life
Identifying and addressing common cultural misperceptions around treatment is a strong first step.
Society places great value on saving lives at any cost, even when certain interventions are not likely to provide improved quality or extend life, and sometimes even when patients may desire fewer heroic measures or discontinuation of treatment altogether.
At the same time, within the medical community, death is typically seen as a bad outcome, as opposed to a natural part of life—something every patient will eventually experience. Yet, we measure care quality by publicly reporting mortality rates—used to assess performance of hospitals, providers, and other health care agencies, and reported by state and federal health agencies as a way to provide standardized comparisons.
However, the mortality rate measure is limited, as it does not always take into account the risk profile of patients and may lead to misinformation, according to a report published in the International Journal of Health Policy and Management.
As a society, we apply a negative connotation when people die under a physician’s care, and a life ending is often perceived as a failure. It’s time to change how we measure quality of life and care at all stages of life, taking a holistic view of the patient’s current health condition and their wishes for treatment.
Today, when patients have a terminal diagnosis and are placed under hospice services, they transition to a new care team charged with easing their pain and discomfort during their final weeks and months. While it’s important work, it shifts the fundamental nature of the patient and primary care physician relationship, one that has—in many cases—been built over years and comes with a significant trust factor. Patients are expected to rapidly put their trust in a new set of providers. When this trust hasn’t been developed, the patient may question whether the providers are acting in their best interest, which can be highly distressing.
Advance Care Programs
Because primary care physicians are often seen as the quarterbacks when it comes to coordinating care, they’re the logical and natural choice for managing advance care planning for patients. By bringing the following methodologies into their practices as part of an advance care program, primary care physicians can positively influence the patient experience and outcomes when it comes to serious illness and end-of-life care.
• Advance care planning involves helping patients understand their disease pathways and the trajectories. This allows patients to evaluate themselves, their risk profiles, and the benefits associated with specific treatments in relation to that risk.
For a patient with multiple diseases—eg, heart failure, liver failure, and diabetes—it would involve a conversation with the patient to review their treatment options, chances of surviving a transplant, and the potential tradeoffs of different treatment options. Holding these discussions well in advance of end of life is an optimal way to enhance care quality and add meaningful time to a patient’s life. In fact, a recent study showed that doing so enhances quality of life for patients with advanced cancer.
Artificial intelligence can be used to begin to develop those models and guide the development of care pathways. This approach stands to become a fundamental feature to implement for advance care planning protocols.
• Polypharmacy examines the impact of medications on patients during treatment. This includes using the Beers Criteria, which geriatricians have used for decades to identify potentially inappropriate medication use in adults older than 65 years of age. The goal is to understand when the mortality benefits outweigh the side effects, risks, and dangers associated with medication safety for each patient.
For example, blood pressure medications are considered appropriate for patients until end of life, but we also know that these medications after the age of 85 increase a patient’s risk of falling. Anxiety medications can also come with harmful tradeoffs in older patients. This is another example of why it’s important to have active dialogue with patients, making them aware when significant risks are present, providing professional guidance on why it may make sense to stop certain medications, and then working with the patient to determine the best path forward based on their unique wants, needs, and goals.
• Addressing psychosocial and behavioral concerns. This includes understanding and addressing concerns around the patient’s social determinants of health, as well as identifying and addressing the social and existential conflicts that patients may be experiencing as they near the end of their lives, including family situations.
This may involve helping the patients’ families through the changes, working with them to see that patients’ care plans are followed and pointing them toward resources that will help them stay healthy themselves as they care for their loved ones and prepare for their loved ones’ eventual passing.
• Care coordination is extremely important. The goal is to defragment the care process, coordinating care in a meaningful way to reach the patients’ own goals for outcomes. For end-of-life transition, it means making sure patients’ wishes are carried through the entire care team structure, helping each clinician to recognize what the patients want and to respect that when it comes time to make decisions. These are all conversations that should take place and be documented well before patients are admitted to any inpatient care facility.
The primary care physician should be the center of this coordinated effort, working with the different parts of the care team, introducing the patients to them earlier in the process, and verifying treatment plans, follow-up care, and medication management. This includes being able to deliver primary care in the home environment, and bringing personalized, coordinated care to patients who might otherwise lose their connection to their primary care physician.
Most important, improving care coordination and incorporating these principles into the primary care model helps ensure the delivery of palliative care at every stage of the patients’ journeys with the primary care physician encounter.
Challenges of Adopting Advance Care Into the Primary Care Practice
Still, adopting advanced care models into the primary care practice brings certain challenges.
Training is an issue. Medical education programs typically don’t provide advance care planning as part of the curriculum for general practitioners. While helping patients understand the treatment options as part of advance care planning is the first step in the primary care model, doctors are not routinely equipped to do that work.
Our care system remains highly fragmented, and primary care physicians aren’t always in the loop on the specialty services their patients receive. This creates a disconnect with treatment that’s happening, leaves patients without insight on any potential medication interactions, and can decrease their quality of life or even hasten their decline.
Timing is also important. Taking into consideration a patient’s age, conditions, and prognosis will help determine when the timing is right to begin advance care conversations and planning. An elderly patient with advancing multiple chronic conditions, for example, is going to be much more likely to engage with advance care planning than will a healthy 20-year-old.
Advance Care Planning Supports End-of-Life Dignity
Ultimately, the commitment to improving end-of-life support for patients can help ensure the medical community appropriately addresses the needs of aging and very sick patients. Incorporating advance care that focuses on the whole person as part of the primary care process can go a long way to reducing misperceptions around end of life.
More importantly, it can significantly benefit patients, offering a voice and opportunity to clarify their wants, needs, and goals as they approach the end of their lives—giving them more control of pain management options and helping to ensure their treatment is approached with dignity.
— Mayank Shah, MD, FAAFP, is chief medical officer for Alegis Care, a home-based care delivery solution that works side by side with patients in the comfort of their home to deliver direct patient care, comprehensive health assessment services, and targeted care delivery programs to optimize care and the connections between providers, patients, and payers.