by Stephen “Fred” Divers, MD, Chief Medical Officer & Julia Frydman, MD, Medical Director for Palliative Care
“I wish we had done this sooner.” This is something that we hear a lot from our patients and their families when they finally begin to work with a specialist palliative care team – and not only when they are nearing the end of life. This is equally true when patients’ conditions are curative.
For patients with cancer, heart failure, dementia, amyotrophic lateral sclerosis, strokes, and many other serious illnesses, robust data correlate early palliative care with reduced hospitalization, higher survival rates, improved pain management, lower medical costs, better mental health, and improved quality of life.
However, despite that bounty of advantages, only a fraction of our patients who would benefit from early palliative care actually get it. In addition to other access barriers, the pervasive misconception remains that palliative care equals hospice.
There is an urgent and unmet need to normalize the use of palliative care from the moment of serious illness diagnosis. For that to happen, we need to take a long, hard look at how we can help patients and clinicians overcome pervasive myths.
Mortality Is the Elephant in the Room
I (Fred) have been a medical oncologist for 25 years. I’ve delivered the news “you have cancer” more times than I can count. During these difficult conversations, I help patients understand their diagnosis, navigate their symptoms and adverse effects, and recommend a course of treatment. My clinical decisions are rooted in patient data and standard care protocols to achieve the best possible outcome. Simultaneously, I work hard to offer conscious sensitivity to patients’ emotional needs.
When my mother was diagnosed with stage IV non-small cell lung cancer, she received excellent care from her oncologist. My role was as a supporting family member. Through this process, I obtained a greater understanding of the viewpoint of patients and their families.
While focused on the myriad of issues related to my mother’s cancer journey, outside of the disease-modifying treatment plan, we were not prepared to process “what if” scenarios about her disease progression. A palliative care specialist would have been an enormous help with that. However, even knowing what I know, I cannot say for sure that we would have sought it out. There remains a heavy misconception that palliative care equals hospice – that when you bring in a palliative care doctor, you are “giving up.”
Palliative Care Should Align With Patients’ Personal Values
I (Julia) have seen misunderstandings about palliative care all too often, and not just with patients with cancer. Patients with chronic, complex conditions such as heart disease, kidney disease, or neurological disorders all encounter practical, physical, emotional, and existential challenges. Yet specialist palliative care remains infrequently introduced to help patients manage their symptoms and align treatment with their personal values.
We clinicians understand that the physical pain, disruption of life, and emotional toll of serious illness are challenging for patients. However, most of those challenges happen between visits, where doctors have little visibility. Few of us are formally trained on how to have conversations with patients about their values. Fewer still are prepared to delve into how treatment decisions may or may not map to those values.
For instance, does a frail elderly patient want to be admitted to the ICU? Or do they wish to remain as comfortable as possible in their favorite recliner at home? Which medication should you prescribe to a young man to make sure that nausea and exhaustion will not prohibit him from taking care of his children when they get home from school? When a patient’s condition does deteriorate beyond expectations of recovery to an acceptable quality of life, how do you help them and their caregivers prepare for the end of life?
Clinicians are not to blame, of course. We work under severe time constraints and rarely have the luxury of really sitting with patients to talk about the parts of their treatment journey that are not the medical treatment itself. There is just too much for them to contend with alone.
We Need to Eat the Elephant “One Bite at a Time”
The difficulty in having these conversations about fear, pain, personal values, and mortality is an argument for bringing in a palliative care team as early as possible after diagnosis. This need not be with the expectation that the patient will see their palliative care clinician every month. It can be merely to begin educating patients and to give palliative care clinicians a chance to begin understanding patients’ individual needs.
I (Julia) cannot predict where along the course of treatment a patient is going to need help managing symptoms, navigating anticipatory grief, handling practical matters, or doing end-of-life planning. You don’t want to bring in a palliative care specialist as a last-minute pivot. It takes multiple meetings to build a good understanding of the patient’s goals and values. Engaging early makes it orders of magnitude easier to provide help when it is needed.
For example, take my former patient with dementia. Most caregivers are unaware that advanced dementia symptoms include progressive impairment in daily activities and, ultimately, difficulty swallowing. Working with a palliative care clinician early allowed the patient to participate in decisions about moving to a skilled nursing facility and foregoing artificial nutrition while they still had the cognitive resources to do so.
Having detailed discussions about disease progression and personal values in advance also goes a long way to relieve the emotional and practical burden on caregivers when conditions deteriorate.
Positive Steps Toward Early Adoption of Palliative Care
There are other access barriers to fully implementing early palliative care. For example, it remains difficult to support an interdisciplinary team under existing fee-for-service (FFS) billing codes, and palliative care clinicians remain in short supply nationwide, especially outside of major urban areas. In addition to that shortage, there is also not nearly enough emphasis on palliative care skill development among nonspecialists.
However, there are some tailwinds driving early adoption of palliative care forward.
Improved reimbursement options
Innovative value-based healthcare models, such as the Enhancing Oncology Model program, are making it possible to implement palliative care outside of the conventional FFS structure. New CMS reimbursement codes for 2024 are making it somewhat easier to provide palliative care within a FFS framework.
Statewide palliative care laws
An increasing number of states have already passed legislation ensuring equitable, statewide access to palliative care. Typically executed through state Medicaid agencies, these laws help define specialist palliative care benefits, with the goals of improving quality of life for seriously ill patients and their caregivers and reducing unnecessary hospitalization. Many more states are hot on their heels, having established task forces to evaluate and advise on improving the quality and accessibility of palliative care services.
Opioid legislation
Because of concerns about inappropriate prescribing, state and federal laws governing opioid prescriptions have become more restrictive, making pain management access more challenging for people living with serious illness. Primary care doctors and other subspecialists are increasingly welcoming support from palliative care specialists, who may have more expertise in navigating complex pain management needs for both for patients who require opioids and for those who would be better managed with alternative strategies.
Changing generational perspectives
Previous generations of clinicians learned across the span of a career about the benefits of palliative care, and are now more likely to bring in specialists earlier for patients who are undergoing active treatment, as well as end-of-life care. On the opposite end of the spectrum, younger doctors today are more likely than their predecessors to be exposed to palliative care in curative and noncurative scenarios early in their careers.
There are also more educational resources available today, such as clinical training and practice guidelines from the Center to Advance Palliative Care and top-down initiatives from the American Society of Clinical Oncology (ASCO). All of this bodes well for broader early adoption.
Telemedicine access
The technology and regulatory permission for telehealth that emerged during the COVID-19 pandemic is now breaking down a key access barrier to palliative care outside of dense urban areas. Ongoing telemedicine access has the potential to drive early engagement with palliative care for all, provided we remain mindful of the digital divide experienced by historically marginalized populations. Recent landmark data presented in the plenary session at the 2024 ASCO Annual Meeting showed that remotely administered palliative care services can be just as effective as in-person delivery.
For patients living with cancer and other serious, life-threatening illnesses, the introduction of palliative care “sooner, rather than later” is a protocol whose time has come to fully embrace. It can reduce pain and suffering, hospitalization, and financial toxicity. But we still must do more to overcome misconceptions and to increase equitable access to palliative care.
This article was published by: Oncology News Central