Most people with a diagnosis impacting their quality of life intuitively understand how they could use “an extra layer of support.” Loved ones need it too. Chronic and terminal disease reverberates through families like the stressors calving a glacier, impacting spouses, children, and grandchildren alike, often turning their lives on end. Although many spouses bravely say, “It is what it is,” others also admit, “I never thought retirement would look like this.”
Despite a clear need for greater access to palliative care, far too many patients and families aren’t connected to it until much too late. This, in part, stems from palliative care being siloed in healthcare. We’re not connected to emergency departments, ICUs, nursing facilities, or clinics caring for patients with chronic and terminal diseases.
It’s high time that changed — and in order for that to happen, we need a rebrand to help other healthcare professionals better understand what we can do for patients.
What Matters Most to Patients and Families
The primary task of medicine is to evaluate and treat disease — the deviation from the biological norm. With its clinical staging systems, labs, and imaging studies, the medical community is most comfortable in a space dedicated to disease. But disease is just the tip of the iceberg.
That giant chunk of iceberg wreaking havoc beneath the surface is where life happens for people. This is the personal experience of disease — illness — and its impact on the day-to-day concerns of living.
“Who’s at home feeding my dog while I’m in the hospital?”
“Am I going to miss my daughter’s wedding if I go to rehab?”
“My husband hasn’t slept in 2 weeks, and neither have I; I’m exhausted and can’t go on.”
How disease impacts patients’ and families’ lives matters most to people, and that’s where palliative care shines. Many healthcare professionals are unaware of our capacity to help.
How Palliative Care Shines
Palliative and hospice care are intended to improve patients’ and families’ quality of life by treating symptoms and delivering emotional, physical, and spiritual support. Unfortunately, patients and providers alike often believe palliative care is synonymous with hospice care — but palliative care is support at any point in a disease journey, while hospice care is support for the end of a journey. To clarify this common point of confusion, our palliative care service changed its name to supportive care, following the lead of the MD Anderson Cancer Center. This rebrand may be just what the field needs.
Empowered by a team that includes social workers, chaplains, and financial navigators, the job of palliative care is to consider the whole person, including their spouse, children, extended family, and even pets. We consider every domain that impacts living and can contribute to distress or despair, including spiritual concerns about mortality, financial constraints, and practical considerations about day-to-day living.
We also anticipate the end of life, helping people consider and plan for late-life living and end-of-life care. When patients get to the point of meeting hospice criteria — when we worry that their time is limited — we help them transition to comfort-focused hospice care so they can pass peacefully and with dignity, and so their caregivers can be well-supported on the way.
Sadly, palliative care remains a consulting service, only involved in patients’ lives once a physician considers us and makes a referral. Trained almost exclusively in diagnosing and treating disease and keeping people alive, the medical community is not taught about the end of life and how to use hospice criteria to evaluate where a person is in their journey. Not knowing when the end is near, the medical community often misses the forest for the trees, and ignores the elephant in the room.
Palliative care is almost always engaged far too late, if at all, and many patients are offered hospice care only when physicians have nothing left to give. Patients and families are frequently blind-sided by disease and decline, unprepared for what the end-of-life journey will look like. This is unfortunate because death is not the surprise ending of human life, and compassionate, supportive care can help ease the fears, worries, and concerns that many have as they or a loved one approach the final chapter.
Compassionate Collaborative Care
Rather than waiting for referrals, palliative care providers should be embedded throughout the healthcare system, prepared to support patients and families across the disease continuum from diagnosis on, not only at the end. This approach, called Compassionate Collaborative Care, would provide continual support and education to patients and families, continually assessing their needs and discussing and aligning their wishes and values with their care.
Providers trained in this approach and empowered with the element of time to have these delicate conversations should be found in emergency departments, intensive care units, specialty and internal medicine clinics, and assisted living and nursing home facilities — that is, wherever patients with new, chronic, or terminal disease are cared for.
If we moved palliative care away from its siloed space by embedding providers trained to give this type of support wherever patients are cared for, patient and caregiver quality of life would improve, end-of-life hospitalizations would decline, non-beneficial treatment would more easily be avoided, and patients and families would feel better taken care of and informed. Respect for patient autonomy, the medical pillar that honors patient choice, would be far easier to uphold, as well-informed patients are appropriately empowered to make choices that accurately reflect their values.
Palliative care has a branding problem, but it is also hamstrung, prevented from supporting the quadruple aim of healthcare — right care at the right time, improved patient and family quality of life and experience of medicine, reduced cost to the patient and the system, and improved clinician experience — as it is uniquely qualified to do. Although modern medicine has made living longer possible, most people at the end of life want the same thing — to express and experience love and to be at home surrounded by their family, friends, and pets. The task of healthcare today is getting there compassionately. Palliative care baked into the system is the key.
Amy Shaw, PA, is a dementia care specialist and palliative and hospice care provider. She is the author of the forthcoming medical textbook, The Arc of Conversation: A How-to-Guide for Goals of Care Conversations (Springer-Nature, 2025).
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