Hospice care provides comfort and improves quality of life for many patients, but it is still underutilized even though the Medicare hospice benefit has been available to qualified patients since the early 1980s.
I recently sat down to a frank conversation with the Spiritual Director of Hebrew SeniorLife's Hospice Care, Rabbi Amy Goodman about the state of hospice care.
Do you think patients and their families are becoming more comfortable with choosing hospice care at end of life?
This is a challenging question. The concept of hospice care has gained public exposure through books like Being Mortal by Atul Gawande. At the same time, with advancements in medical technology, physicians are able to offer more options to patients than ever before, and often do so to avoid having to prepare patients for the inevitably that treatment will no longer work at a certain point. This tendency continues to surprise me, particularly when it comes to older individuals with complex medical conditions. Even with patients as old as 90 – no one has had the conversation with them that there may come a day when no new treatments are available, let alone that there are alternatives when the burden of treatment no longer outweighs the benefit.
Although there seems to be a growing number of individuals who want to focus on the quality of life as their disease progresses, there are many who say they're not ready for hospice. And even though the medical community seems to be more focused on patient-centered care, patients are still opting for hospice care when it's too late to really benefit because they think choosing hospice care means they're going to die in a few days. That perception is hard for us to overcome.
Is there a platform for physicians to have conversations among themselves about how to talk to patients about end of life and when and how to refer them to hospice?
Absolutely – the Massachusetts Coalition for Serious Illness Care, of which Hebrew SeniorLife is a member, is an example. One of the elements of their platform is advanced physician training. More medical residents are required to do a rotation in palliative care or hospice, often as part of internal medicine or geriatrics rotations. Having said that, our team is regularly called by physicians’ offices reporting that a patient is ready for hospice – and they haven’t yet told their patient. They expect us to take that on. Often specialists such as oncologists or cardiologists feel their work is done when there is nothing more they can do to slow or reverse the course of a patient's disease. But it still surprises me when these calls come from geriatric practices, or practices that care for a significant number of older patients.
What should patients and families consider to help with end-of-life care decisions?
I believe that having as much information as possible enriches any care decision, particularly end-of- life decisions. It's difficult for patients who are not ready to die to talk about end of life. But it's important to have a comprehensive, not morbid conversation about the limitations of medical technology. The question then becomes: what matters most to you as a patient? And you begin to work toward putting things into place that help address their deeply personal and life-affirming answers to that question.
Then there are decisions about medical care. For example, a cancer patient might want to postpone hospice care if treatment reduces the burden of a tumor so they would be able to go to a granddaughter's wedding even though it might not prolong life. But if it's about wanting a cure, and the patient is hearing “treatment” as “cure” then the doctor has to be able to tell the truth to the family. Just because there is a treatment available doesn't necessarily mean it meets the needs of the patient.
Hopefully if the physician is not comfortable having the conversation, they make a palliative care referral. When that doesn't happen, the burden falls on the family – sometimes the housing, social or religious community – to tell the patient, “You have agency in this decision. Just because the doctor is offering treatment, you can still ask questions to determine if that's what you want!” Patients are fearful of being perceived as “troublesome” by their doctors and assume that the care they will receive is less somehow. I wish they didn’t feel that way. And I wish people’s experiences didn’t prove this to be so.
What are some of the fears about hospice?
Choosing hospice often means giving up care from a specialist like an oncologist or cardiologist. When a patient has gone through the wringer, and the physician they have come to rely on isn't around anymore, people feel abandoned. No one wants to hear from the doctor they trust that there are no more options. So establishing trust in the hospice team is often difficult.
Also, because they're foregoing their option to continue seeing specialists for their terminal illness, some patients see hospice as taking away treatment. Others feel like visits from nurses and aides remind them of their infirmity and that they're just waiting around for the end to come and it doesn't come fast enough. So there are many understandable reasons for a real ambivalence about being in this in-between stage.
The most important conversations families need to have is before patients come into hospice. Once they are in our care, our objective is really clear - help the patient live as rich a life as possible, on their terms to the very best of our ability as long as they're in our care. Sometimes that means offering support to fill the days as witness to the human soul before us. This helps affirm to the patient we know they're here and, someone cares about them.