The core of palliative care is connection with Deena Levine, MD

At St. Jude, we treat children with cancer. Childhood cancer is one of every parent’s worst fears realized. Our primary care teams provide therapies to try to cure cancer; they are some of the best in the world. But even here, families report treatment can feel both intense and impersonal, as they are taken through a medical and emotional gauntlet without the expert knowledge necessary to understand why things must be as they are. They see a sick child experiencing distress, such as nausea, fatigue and pain from their disease, but also their treatment, and want to help them still have a good childhood. My colleagues and I are here to help in those situations. As palliative care specialists, we provide a holistic care approach to address concerns, support emotional resilience and provide health education to patients and families to make decisions during such a fraught time while mitigating suffering and protecting quality of life.

I have spent over a decade at St. Jude in palliative oncology, now serving as director of the Quality of Life and Palliative Care Division in the Department of Oncology. There are misconceptions about palliative care, and I have needed to explain what we do to other physicians as well as patients and families. One analogy calls back to the root of the word palliative, tracing to the Latin word “palliare,” meaning “to cloak.”  Palliative care is like providing a warm jacket (cloak) when a car breaks down on a winter day. The root problem must still be addressed, but the driver’s quality of life while standing on the side of the road waiting for a tow truck is much better if they’re warm.

Like providing a jacket in the cold, St. Jude palliative care specialists focus on holistically improving and protecting patients’ and families’ quality of life from beginning to end of their treatment journey. As our colleagues target the cancer, we address the patient experience. If patients have excessive pain, we support a variety of pain management strategies. If they want to travel, we counsel them on if and how they can still access care during their time away. For every symptom and treatment complication, we provide extra support, informed by our medical knowledge and palliative care models, to impact a patient’s well-being from every angle.

Palliative care is an investment in trust

Even more than other medical practices, relationship-building is the beating heart of palliative care. Trust from patients and families is our currency, which we spend to help them meet their goals. Much like an investment, the sooner we make a strong connection, the more trust compounds in a virtuous cycle fueling our therapeutic alliance.

Much of my academic work focuses on palliative care’s early integration into the treatment journey. Families can be reticent to accept palliative care late in treatment, incorrectly assuming our involvement means the worst. Instead, we’ve shown (as published in JAMA Oncology) that standardizing our involvement early in processes can pay dividends. When we changed our approach to meeting with every patient and family undergoing cancer treatment at the beginning of their journey, we observed that our presence at an earlier and better point in time led to a more trusting relationship. That trust enabled us to provide optimal quality of life and decision-making support through more difficult times.

We ensure the patient and their family are at the center of palliative care. We don’t make the decision that’s right from our perspective — we help support the decision that’s right for each patient and family. Every family has their own goals, fears and values. By understanding their concerns, we help them understand their options and what different decisions may mean for them. We bring medical knowledge but present it in the context of their ideals. Through the trust we’ve built, we see greater adherence to treatment protocols and mitigate unnecessary suffering.

Another key relationship we build is with the primary care team. We work together to apply palliative care principles to ensure patients receive the best treatment with the least suffering. In one memorable case, we observed many patients receiving bone marrow transplantation experienced severe nausea, but the conventional interventions did not alleviate their symptoms. In principle, we adapted a technique from adult hospice, combining three drugs to help those with severe symptoms. It worked so well that the floor eventually adopted it as clinical practice for all patients. That example shows how the connections and established trust with our colleagues and patients enable us to try novel solutions, improving the quality of life for current and future patients. 

Out-of-the-box thinking is palliative care thinking

One of the freedoms we have as palliative care specialists is the ability to use a wider toolbox. As we address quality-of-life concerns, we can go beyond pharmaceutical interventions. In fact, we often must try more out-of-the-box solutions. For example, our outpatient clinic offers acupoint, massage and aromatherapy, from which patients have reported improved quality of life during treatment. 

Palliative care also sometimes flips medical education on its head. Grief and bereavement services are necessary for any oncology practice but are particularly poignant for a pediatric hospital. However, physicians receive little dedicated bereavement training, and there is a dearth of research compared to cancer care itself. So, when we established palliative care principles for when a child dies, education came from the most experienced and willing source: bereaved parents. 

St. Jude is a special place in many ways, but our relationships with our patients and families may be the most important. Parents whose child’s treatment was unsuccessful still offer to help us. Through speaking with them, we’ve created a structured bereavement program. Some of those parents teach our physicians and staff how to provide proper support and continue to advise us on best practices.

Palliative care can be difficult to summarize. We are tasked with providing the extra support families need tailored to their goals and values. There aren’t enough palliative care specialists to go around, so we spend much of our time teaching primary care teams basic palliative care principles to apply. When we are assigned to a patient and their family, we must find ways to build trust and then use creative thinking and problem-solving to meet their needs. Every day presents a new challenge; every day threatens to bring both triumph and tragedy. But at St. Jude, we continue to dedicate ourselves to protecting and improving our kids’ quality of life. 

That’s what palliative care is about.