By Lindsay Gandolfo
I thought I knew what palliative care was, but really, I had only part of the picture. Before speaking with Ana Berlin, MD, general surgeon and palliative care physician at Columbia, I had prepared questions about what makes a “good death.” All of my musings swirled around end-of-life, the many ways we as humans interpret dignity and comfort. I figured we would have a conversation about palliative philosophy, communication, and the ways in which a doctor determines what a good death means to their patient.
We got there, certainly, but the fixed point I placed at death was missing the bigger picture. Palliative care is wider than I thought, more flexible than I assumed. It’s not just for end of life, but helpful across the entire continuum of illness and treatment. Most importantly, it’s not just for the patient.
“Palliative care is appropriate for seriously ill people at any stage of illness, from the time of diagnosis through the period of rehabilitation and recovery,” says Dr. Berlin. “Many patients with serious illness will go on, actually, to be cured, but that doesn't negate a period of palliative care needs.”
Some may need help managing pain and side effects during treatments. Others may need long-lasting or permanent support even after they've been cured. Dr. Berlin went on to explain that patients who deal with painful neuropathy from chemotherapy, for example, may be cured of their cancer, but have a lifetime of related chronic pain or dysfunction to manage.
She defines palliative care simply as “focused on reducing those symptoms and improving quality of life for patients and their caregivers.”
Anyone who has cared for a loved one during serious illness or end of life knows how painful and demanding the responsibility can be. You’re coping, you’re processing, you’re making impossible decisions. On top of it, there are bills to pay. Our current system isn’t equipped to help us manage the massive emotional, strategic, and financial burdens that come with caring for our aging or ill family members. Every day can be a struggle.
“Caregiver burden is an under-recognized and underappreciated aspect of serious illnesses,” says Dr. Berlin. “Everybody thinks of cancer right away, but serious illness also includes things like heart failure, COPD, and dementia. Dementia is a really big one. Caregivers deal with a lot of stress and a lot of burnout, huge expenses, lost hours at work, competing demands. We deal with a lot of families, honestly, who are running on empty.”
The daily grind, the drain on loved ones, is precisely what I overlooked as I prepped for our conversation. My assumptions quickly dipped to the abstract, but palliative care is practical. It is often long-term. So much of it is tangible. Sometimes it’s about helping caregivers find childcare or a therapist, often it includes referring families to external organizations and hospital services.
“We may connect families with chaplaincy. We may have our inpatient teams do repeat daily visits just to help family members deal with and process their own emotions around a new diagnosis or prolonged condition,” says Dr. Berlin. “We do a lot of referrals in an end-of-life setting to hospice care. Many people don’t realize that one of the most important hospice benefits is that hospice provides 13 months of bereavement support for family members.”
As Dr. Berlin brought the conversation back to end of life, it dawned on me: there is no universal definition of a good death. Palliative services provide relief to make room for the meaningful. The work centers around facilitating respect, honoring what matters in the end to the patient and their family.
“What I view as a good death is irrelevant when I'm dealing with a patient or a family member,” says Dr. Berlin. “Some people want to die at home. Some people would never want their family to remember their home, or to associate the home, as the place of such a sad and grief-stricken moment. Some people don't want to die on a machine. Some people value every minute and every second of life, regardless of the immense burdens associated with that.”
In many cases, the opportunity for a direct conversation about death with a patient isn’t possible. Many inpatients, for instance, lose the ability for self-determination before anyone around them recognizes, before they express their wishes.
“We often have to rely on family members to tell us about the person. And we really listen to the language they use, if the idea of fighting for a good death or fighting to live comes up,” explains Dr. Berlin. “When families characterize their loved one as struggling, for example, sometimes we ask about the struggles they’ve faced in life and how they overcome and preserved in the face of these struggles. And then we ask, ‘how can we extrapolate that to the struggle they’re facing now, at the end of their life?’”
Before I could ask twenty more questions about that process and fall down the rabbit hole of conversation around depathologizing death, Dr. Berlin reminded me of an important fact: “We’re not just the end-of-life people; we’re about so much more than that,” she says. “We want to empower people to live their best lives. That’s what palliative care is really about.”
For more information, please contact (212) 305-3953; To schedule patients for an appointment with a palliative care specialist, please call (212) 305-7340