During a recent palliative conference, the discussion turned to the challenges of translating our work to the public and our colleagues. Despite the growth of our field and increasing access, there remains major confusion about palliative care and hospice. Much of the misunderstanding originates from within the medical profession. Having worked in the palliative care and hospice arena for nearly two decades, I have seen many examples of the confusion and fear of our field.
A common response to a palliative care recommendation is, “They’re not ready for that yet.” However, current guidelines are to initiate palliative care services upon the diagnosis of a serious illness. Earlier evaluation allows for time to establish rapport with both the patient and family while keeping quality-of-life considerations in focus. Shared decision-making requires careful dialogues to relay complex medical issues and understand the patient’s priorities for their care. This is best done in the context of a relationship.
During my time as a palliative consultant in a regional hospital, I had the experience of a surgeon questioning why I was seeing his patient: “I haven’t given up on him yet.” We don’t give up either; assisting patients to manage serious illness by addressing symptoms but also spiritual, psychological, and social challenges with a supportive team is hardly giving up. I have often found it ironic that whole-person care is often reserved until someone has a serious or terminal diagnosis. Interestingly, this high-intensity supportive care can result in patients outliving their original prognosis.
In the hospital setting, we were often consulted for the purpose of “getting the DNR.” In one case, the ICU consulted us to transition a patient to comfort care. A careful analysis and family meeting uncovered that the patient was established with an organ transplant team at the university hospital. After a few phone calls, a transfer was arranged. It is usually perceived that palliative care means a dialing back of aggressive management, but I have been the one to recommend an escalation in care when it aligns with the patient’s goals. In another case, the patient initially refused an amputation. The medical team recommended hospice, but a careful discussion with a better understanding of the cultural nuances meant finding a compromise that provided the patient with a longer prognosis.
Unfortunately, I have observed a colleague use hospice as a threat: “If you don’t participate with the rehab team, I will send you to hospice.” There was clearly no appreciation that we don’t “send people to hospice.” In fact, patients must sign consents to enroll in hospice. This use of hospice as a punishment, of course, only serves to confuse the situation and generate fear. Sadly, that fear often means patients don’t get the support they need as they face the end of life. I have heard countless times from patients and families, “I wish we had known about hospice earlier.”
This fear is not limited to the public. It is often generated by those within health care. In one case, an oncologist introduced the hospice team by explaining, “They will discuss another approach to care.” When “hospice” is a dirty word and our own colleagues are afraid to say it, this only perpetuates the misunderstandings. My approach is to introduce hospice early before people qualify as a way to normalize the conversation but also assure them that there will always be care available. I have heard medical personnel say, “There is nothing more we can do,” instead of assuring patients and families that we can continue to care, support, and manage difficult symptoms until the end.
I have also observed an either/or approach to pain management, with patients being informed that they must enroll in comfort care to obtain adequate pain relief. This is where the expertise of palliative care can be especially valuable in addressing the total pain experience of patients. Careful titration and a multimodal approach to pain and the concurrent anxiety that often accompanies it can often offer improved symptom management.
There is also the perception that palliative care is simply enhanced case management or does not rise to the level of a medical specialty. Palliative care relies upon an interdisciplinary team of professionals to address all domains of care—physical, social, cultural, psychological, and spiritual. It starts, however, with a detailed medical assessment, a review of the diagnoses and associated symptom burden, recognition of patient capacity for decision-making, and prognostic awareness. Many organizations, in their eagerness to check a box to indicate they provide palliative services, will have only one discipline carrying out the consult, which indicates a misunderstanding of the basic tenets of our model.
A colleague recently relayed to me that the hospitalists in their regional medical center are handling the palliative care needs. In the next breath, however, he told me, “But I avoid the family meetings.” The family is central to the palliative model, as serious illness ripples throughout a family, changing responsibilities and family structure. Education to caregivers is critical to successful care transitions. When family meetings are not a priority, the care is impacted. As an example, our community hospice is seeing many families without a clear understanding of the medical status of the loved one they are expected to care for at home. In one case, the RN sent the patient back to the hospital when she determined the husband was too demented to care for his ailing wife. During a family meeting, not only do I assess the patient’s medical issues, but I also determine the family’s ability to provide support and care in the home. The family is the unit of care in our work.
There is also confusion around primary versus specialty palliative care. Primary palliative care refers to the basic skill set that all physicians should have to provide supportive care to patients with serious and/or terminal illnesses. This includes basic training in breaking bad news and managing challenging symptoms. Specialty palliative care refers to an interdisciplinary team, usually led by a physician board-certified and/or fellowship-trained in the area of hospice and palliative medicine. Comprehensive services should be available to patients and families across the care spectrum in the inpatient and outpatient environments.
As medicine has become increasingly more complex and treatment options have expanded with the growing trend toward person-centered care and shared decision-making, palliative care is essential. In my experience, people want deeper connections with their medical team, better communication about the disease process and what it means for them personally, and their quality-of-life considerations. That is palliative care!
Aldebra Schroll is a family physician.
