My day job is now in Palliative Care. I support the clinical teams who have borne an outsized burden in the pandemic. When I took this role, many people asked me what palliative care is. Others already thought they had it understood- it was support of the dying. There’s a lot more to the profession, as I am learning. So I’m sharing home history here in hopes it will help shed light on this crucial specialty, which goes well beyond just supporting those in their final weeks of life.
Many patients and families conflate hospice and palliative care. But these related fields differ in important ways. There is often a hesitancy to utilize hospice or acknowledge a potentially terminal prognosis. It can feel to some like “throwing in the towel” on hope or prayer. Language is highly specific and deliberate among palliative care providers. They are trained not to use words like death, or even hospice, until/unless a patient or their family brings it up. The goal is to meet people where they are in terms of their prognosis. It can be easier to say “serious illness” that terminal. It can be easier to say “uncertain prognosis” than assigning a timeline.
Palliative care emerged as a distinct subspecialty within medicine some 20-30 years go. This was well after CMS (Center for Medicare and Medicaid Services) defined hospice. Hospice was a highly specific benefit outlined in the 60s and 70s which covered patients determined to have a six month or less prognosis as certified by two providers. In order to qualify for hospice, the patient (or surrogate decision maker) need to agree to forgo any further curative treatments. As the benefit was fairly robust, it led to a flourishing of hospice agencies. Hospice and palliative teams have similar skill sets. They often involve interdisciplinary teams and significant medication utilization, primarily around pain control. Hospice providers are often RNs or nurse aids.
The field of palliative care came about out of an acknowledgement that well before their last six months of life, well before anyone decides to stop treatment, patients have many important decisions to make, and lots of pain and other symptoms to manage when they have a significant chronic condition. Palliative care can support patients even at an early time, such as an initial low-stage cancer diagnosis. Oncologists focus on treating the cancer, as they should. But palliative care teams can work with patients in a more focused way to help cope with the side effects of chemo or radiation. They can also support chronic issues well beyond cancer (such as heart failure, dementia, neuromuscular decline). Indeed, they can also work in NICUs and in pediatrics for difficult births or other serious conditions in children.
A central concept to both palliative care and hospice is the idea of “total pain.” Coined by Dame Cicely Saunders, the idea is that pain in serious illness goes well beyond just physical. Patients may suffer from social isolation, mental anguish, and existential grief. Palliative care teams are built around addressing all of these dimensions.
Our interdisciplinary teams comprise doctors, nurse practitioners, social workers, pharmacists, and chaplains. They all work together and follow a patient together to address not only the medical condition (and treatment side effects), but the psycho-social-spiritual needs of each patient and their family. Social workers can both serve as therapists for anxiety/depression around an illness and help to coordinate social services and other resources. Spiritual care professionals like chaplains and others can help patients navigate difficult end of life decisions in a way that aligns with their faith.
Our teams also bring in integrative modalities- massage therapy, acupuncture, reiki, and many other forms of support. In many ways, this is a specialty on the cutting edge of blending western biomedicine and other traditions (such as Chinese Medicine and Ayurveda).
Patients can work with palliative care well before any kind of final decision is made about stopping treatment. Indeed, much of the team’s unique skill is in working with patients and families to help talk through decisions as early as possible and understand the patient’s personal views of quality of life and goals of care. Indeed, one of our initiatives now is to help reach healthy, younger people to make sure they have advanced directives and healthcare proxies set up well before anything happens to them (and in case of any kind of unexpected trauma or accident).
As a disease progresses, our teams do work closely with hospice. When that time comes to refer to a hospice, the whole focus is on keeping patients comfortable, understanding their final wishes, and giving the family time to spend together and grieve. Hospice offers a profoundly meaningful support in helping towards a “good death.” But because there is often a hesitancy to acknowledge the severity of a disease progression, patients and families often do not seek it out. Part of our job is to help in contemplation about what a good death is — how do they wish to spend their final days. Most patients don’t want to spend their final days/hours in a hospital room connected to machines.
This is all the more important during COVID in which visitation is often limited or prohibited. Our teams are now even more intimately involved in these transitions now. They are the ones holding the tablet for the family to see when the team in the ICU “pulls the plug” (AKA compassionate extubations). Technology has been often the only life line patients have to the outside world these days. And family meetings and final breaths are now sometimes witnessed by dozens of extended friends and families over zoom. It is bittersweet that more can be present generally even as few if any can be there at the bedside itself.
I see signs of wear and exhaustion in our teams, as well as unparalleled amounts of tenacity. People on the ground in healthcare are sick of being called heroes in many cases. So I will skip any kind of labeling and just say it’s been an honor to get to work alongside these amazing teams.
The best time to make sure your own wishes are known is to complete an advance directive and health care proxy now. Each state has slightly different rules around what needs to be outlined and who needs to witness/notarize. But you can find a listing at AARP below (you don’t need to be retired to use this):
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