The evolution of palliative care

As an internal medicine, hospice care, and palliative care board-certified physician, I’ve had the privilege of providing palliative and hospice care to vulnerable populations in central and southwest Ohio for nearly 10 years. Over the past decade, I’ve seen palliative care undergo a significant evolution. Once viewed with suspicion by oncologists and patients, it has now become an integral part of patient-centered care for people with cancer.

Palliative care is a critical aspect of comprehensive treatment, recommended for anyone with cancer, at any stage of the illness. While it’s still frequently confused with hospice care, there are important distinctions between the two. Unlike hospice care, palliative care is not exclusively reserved for those at an advanced stage or with a terminal diagnosis. Rather, it aims to improve the quality of life for cancer patients by managing symptoms and side effects of the illness and treatment.

A core palliative care team generally consists of a physician, a nurse practitioner, a nurse, and a social worker. The palliative care team is there to champion symptom management — recognizing that symptoms might span the physical, behavioral, and social needs of our patients.

Out of the five main diseases that palliative care works with (neurodegenerative diseases, dementia, COPD, heart disease, and oncology), cancer patients see the most treatment-related symptoms and side effects. Chemotherapy and radiation can be as debilitating as the disease itself. Early intervention is crucial in the prompt management of side effects and symptoms, which can include nausea, pain, fatigue, loss of appetite, weight loss, depression, brain fog, sleep disturbances, and breathlessness.

Palliative care can be provided alongside active cancer treatment and continue even after active treatment ends. The approach is holistic, addressing not just physical symptoms but also psychological, emotional, and social issues that may arise due to the cancer experience.

It also provides tools and resources for families and caregivers, enabling them to continue supporting their loved one through the often lengthy and challenging process of treatment. Caregivers shoulder substantial stress and burdens, both logistical and psychological. Providing resources and counseling ensures that caregivers have what they need to keep going.

Research demonstrates that palliative care not only enhances patients’ quality of life, but can also positively affect survival rates.

Historical tensions and evolving partnerships

The relationship between oncology and palliative care has historically been strained, often due to misconceptions. Oncologists feared that referring a patient to palliative care signified giving up on treatment.

This viewpoint is changing. More oncologists now understand the value of integrating palliative care early in the treatment process. Their approach focuses not only on prolonging life but also on enhancing its quality, prioritizing the patient's values, priorities, and wishes. Through advanced care planning and goals-of-care discussions, palliative care providers ensure that the patient and their family stay in the driver’s seat.

We might ask them, “Do you understand what the oncologist said? Do you understand the treatment and its side effects? Are you okay with it? Let’s talk in advance about when it will be enough.” We can then be liaisons to the oncology team, letting them know, for instance, that this patient wants to continue chemotherapy until and unless the side effects prevent them from engaging in specific meaningful activities. At that point, should it arrive, they will choose to stop. Our job is to understand what each patient considers to be a good quality of life and advocate for keeping that consideration front and center.

This approach is informed by the concept of whole-person care. It acknowledges that cancer affects more than just the physical body; it also impacts the psychological and social well-being of patients. Integrating these aspects into the care plan is crucial for comprehensive cancer care.

Connecting with patients on this level and engaging in meaningful conversations about their lives, values, and fears is intricate, sometimes challenging, often rewarding work. Sometimes patients tell palliative care providers things they don’t tell anyone else. We’re able to walk with people through intensely difficult journeys and help minimize their discomfort, while encouraging them to maintain a focus on what’s most important to them.

A brief illustration: One young patient I cared for suffered from breast cancer. She was undergoing chemotherapy and experiencing intense pain. We started her on opioid pain medication, but her pain remained uncontrolled, even as we increased the dose. Eventually it became clear that she had a lot of psychological pain from past experiences in her life. We provided her with behavioral health support, resulting in significant pain improvement and a substantial reduction in her opioid dosage. She continued treatment with much less discomfort and greater peace.

Encouraging broad and timely integration of palliative care

Payers are important to the integration of palliative care into healthcare. They play an essential role in patient satisfaction and contribute to cost savings by reducing hospitalizations and emergency care. Thankfully, payers’ growing understanding of palliative care continues to make these services more accessible to most cancer patients.

Timely incorporation of social workers and palliative support before patients reach crisis points is also vital. Early intervention helps in navigating complex family dynamics and avoiding stressful, last-minute decision-making. It takes time to build the trust needed to collaborate on decisions, and it helps immensely if everyone has had the opportunity to get on the same page, from the patient to their family members to the social worker or other care providers.

Telehealth has been helpful in this regard, particularly in reaching patients in rural or underserved areas. Telehealth facilitates timely consultations and ongoing support, overcoming geographical barriers and ensuring that more patients have access to palliative care services. It also provides options for patients who may be suffering exhaustion from seeing multiple care providers each week, so they can check in with supportive care providers without having to welcome yet another person into their home.

As we look toward the future, palliative care will continue to be an essential component of healthcare, particularly in oncology. Its growth over the past decade reflects a broader shift in healthcare towards a more patient-centered, holistic approach. The challenges ahead include further integrating palliative care into standard healthcare practices and continuing to educate healthcare professionals and the public about its benefits.