Arefa Cassoobhoy, MD, MPH: Whenever I hear about palliative care, it’s synonymously with hospice, but the two are obviously different. Let’s discuss the difference between the two. I’ll start with Diane.
Distinguishing Between Palliative Care and Hospice
Diane E. Meier, MD: It’s a common confusion and misconception. The short answer is that all hospice is palliative care, but not all palliative care is hospice. That is the elevator speech version. The more nuanced version is that the Medicare Hospice Benefit, which was written into law about 25 years ago, was designed to reduce the number of people who would use it. They put strict eligibility criteria around access to hospice. One of the criteria is that two doctors have to agree that a patient is likely to be dead in 6 months in order to be eligible, which is already ridiculous because we have no idea who is going to be dead in 6 months. Second, the patient, or their decision-maker if they cannot decide for themself, literally has to sign a piece of paper agreeing to give up regular insurance coverage in return for hospice. It’s like you cannot have medical treatment, but you can have hospice.
That is called “the terrible choice.” That created the misconception that you could only get palliative care if you were dying and ready to give up. And that is a myth. The problem with that is that most people who need palliative care are not dying. They are living, and often for a very long time—10 years, 15 years—with serious illnesses like chronic obstructive pulmonary disease, heart failure, dementia, or end-stage renal disease. They have a tremendous burden of suffering and caregiver distress, but they are not dying. Palliative care was an answer to that gap. It was recognizing that living with a serious illness nowadays is almost always a chronic disease. No matter how long people have to live, they deserve the same attention to quality of life, treatment of symptoms, management of depression, support for their families, and support for social issues like financing and housing. It should be based on need, not prognosis.
The modern palliative care movement is a needs-based field. We take care of people who are going for lymphoma or leukemia cures, or who are getting a transplant or waiting for a transplant. They are not getting ready to die and they are not likely to die soon, but they have enormous palliative care needs.
Differing Views of Palliative Care
Dr Cassoobhoy: What is your experience in the hospital with other coworkers, other physicians, and healthcare providers as well as patients and their families?
Suzanne E. Zampetti, RN, MSN, FNP-BC: As a consulting service, what we hear often from other services is sort of, “We are not there yet. We are not ready for you yet.” To Diane’s point, it’s that perspective that we are just end-of-life care. It’s really important that we continue to educate other services and other physicians and nurses across the board about what palliative care does, so that we can be useful to them and we can reach out to the patients who need us.
Oncologists are really busy and stretched, and they have more patients in the waiting room. And having a non-rushed conversation about what having a disease means, what to expect in the future, and what to do for a pain crisis in the middle of the night… they need help. We work side-by-side as an added layer of support to what the specialist does. Once they figured out what a huge benefit we were to them, they were like, “We need more.”
How Sick Does a Patient Need to Be to Receive Palliative Care?
Dr Cassoobhoy: How sick does a patient need to be for a palliative care consult? What are the spectrums of illnesses that a patient may have that would qualify them for a palliative care consult?
Ms Zampetti: I don’t think it’s ever too soon to call in a palliative care consult, particularly if you have a potentially life-threatening illness. If you have a diagnosis of cancer, no matter what that may be, there is never an inappropriate time to talk about goals of care—what is important to that patient, what they are hoping to get out of the treatment, and what they would want and hope for if things did not go the way that they wanted.
We do this with our patients who get left ventricular assist devices. They come in looking for this life-saving cardiac device and their hopes are great, and they should be great. We are not there to take away their hope. We are there to discuss what they want if things do not go the way they hope. What would they then hope for at that time? What is important to them, and how would they want to live their life if things were not going the way that they wanted?
Dr Cassoobhoy: It’s interesting, because different patients are going to give different answers. Your role is to respect and encourage the real answer to come out so that it can be respected and honored.