This is the fifth and final installment of a series of short interviews on end of life care that I’m conducting for Spirituality & Health. This week I’m speaking with Diane Meier, MD, director of the Center to Advance Palliative Care at the Mount Sinai Medical Center in New York City. An expert on palliative medicine, she is the recipient of a MacArthur Fellowship. —Sam Mowe
What’s the difference between palliative care and hospice care?
All of hospice is palliative care, but not all palliative care is hospice. Hospice is a Medicare and insurance benefit with strict access and eligibility criteria. The first criterion is that two doctors have to say you’re likely to be dead in six months. In reality, it’s very difficult to predict who’s going to be dead in six months. The result of that requirement is that the median length of stay in hospice is about 18 days. So, even though it’s a six-month benefit, most people get it for only a couple of weeks.
The second eligibility criterion is that the patient—or their loved one if the patient is not well enough to sign—has to sign a piece of paper agreeing to give up insurance coverage for “curative” or life prolonging disease treatment in return for the hospice care. So it’s an either/or model. You can either get hospice or you can get disease treatment. You can’t get both. That is an absurd requirement, because in many instances treatment that prolongs life is also palliative; that is, it improves quality of life.
Understandably, most people are not willing to give up treatment that is effectively prolonging their life—and they shouldn’t have to in order to access care focused on maximizing their quality of life. Yet, under current law, they have to do that in order to access hospice.
Palliative care, in contrast, has no such limits. Palliative care is appropriate at any stage of any serious illness, at the same time that you’re receiving either curative or life-prolonging treatment. Eligibility for palliative care during a serious illness is based on need, not on prognosis.
How would you suggest improving care during serious illness?
We need a benefit that tracks the severity of the illness of the patient. Needs for palliative care will vary across the long course of a serious illness, and we need a benefit that varies along with the needs of the patient and family and is available to them from the point of diagnosis and throughout the ups and downs of the disease process. This can be accomplished by assuring access to palliative care in all settings where the seriously ill live and need help—from home to nursing home to office practice to hospitals and hospices. Clinicians working in these settings and with these patients require undergraduate, graduate, and mid-career medical and nursing education to assure that they have basic competencies in palliative care knowledge and skills. Changes in payment, quality measurement and accreditation and regulatory requirements will also be necessary. Given the explosion in numbers and needs of the chronically and seriously ill of all ages, these changes in educational, payment, and regulatory policy are urgently needed.
What do the spiritual and emotional components of palliative care look like?
The core competency of palliative care is understanding who the human being is with the disease and what matters most to them. It means asking questions like: “What is most important to you at this stage of your life? Given the reality of this disease, what are your greatest concerns? What are your greatest hopes? Your greatest fears?”
And very often, people go straight to the deep spiritual and existential questions about the meaning of the illness: “Why did I get this disease? Why has God abandoned me? Maybe this is a punishment for things I did when I was younger.” Understanding the inner life and inner conversation of the patient and their family is prerequisite to providing care that matches their needs.
Are these conversations that doctors are trained to have, or are these questions asked by other members of a palliative care team?
Well, if you’re a palliative care specialist clinician, you’re trained to have communication skills. Most clinicians are not trained in these essential skills. The other thing is that if you’re working on a palliative care team—and that team is organized around the palliative care quality standards—one of the requirements for quality palliative care is inclusion of chaplaincy and spiritual care support. And the reason for that is not because other members of the team could not be trained how address those issues; it’s just that there are so many other things for other members of the team to be doing. These patients are very complex. Their needs are multidimensional. Their family needs are multidimensional. You need social work, you need nursing, you need medicine, and you need chaplaincy to provide the whole-person care that someone with serious illness requires.
What would you like people to say about you after you die?
I hope that people will say that I was kind and that I cared as much about individuals as about healthcare systems and healthcare redesign. I hope they say that I was a good mentor and teacher, that I showed love and care for my patients and their families. But I think, most important of all, what I want them to say about me is that I was a great mom.