The pandemic broke end-of-life care

‘The first day the palliative-care doctors walked into the ICUs, Thomas [Jane deLima Thomas, the director of palliative care at Brigham and Women’s Hospital and Dana-Farber Cancer Institute] says, “we felt like tourists.” They were dressed in business casual, while their ICU colleagues raced around in scrubs and masks. But the palliative-care team—which includes physicians, nurses, chaplains, and social workers—found ways to integrate themselves. In the early days of the pandemic, when protective gear was scarce, no visitors were allowed. Palliative caregivers, along with ICU nurses, held iPads cocooned in plastic bags so families could say goodbye on Zoom. They were sometimes the only one in the room when a patient died, otherwise alone. I interviewed several members of the Boston-based palliative-care team, and their stories, which have been condensed and edited for clarity, are below...’

Read here (The Atlantic, June 16, 2020)

You should have an advance directive

‘It’s hard to talk about end-of-life care. You should do it anyway...On this episode of Social Distance, James Hamblin and Katherine Wells talk with Edo Banach, the president and CEO of the National Hospice and Palliative Care Organization. They discuss how to create an advance directive and how to broach the topic in conversations with loved ones.’

Read here (The Atlantic, May 14, 2020)

Caregiving and the soul of medicine: Discussion among Eric J Topol, Abraham Verghese and Arthur M Kleinman

Kleinman: ‘It's surprising that I learned this from my personal experience; I should have known it from my professional experience—but care does not end with the death of the person you're caring for. You're caring for memories after that. A clinician also cares for memories, remembering how to think about the care and how to perhaps use a particular case to improve care in the future. The family member, of course, is rebuilding a story about one's life and one's family. Central to that is the memory of the care you gave and what you've gone through. The attention to those memories, their ordering, the time we spend developing them becomes a very important part of our lives after the practical acts of care no longer need be given because the person has passed. Those are the kinds of things I was concerned with.

‘I came to realize two things: First, that care was disappearing from clinical medicine, that clinicians have become so tied up with technologies, and so tied up with delivering the technologies effectively, that they are forgetting about the role that care plays. And second, there's some question as to whether in the future, even in families, we'll have care, given the limited time that family members have today, the fact that both husbands and wives work—this was women's work in the past—and men in our time, no matter how "woke" and liberated they claim to be, are not picking up the task of care.’

Eric J. Topol, MD, is one of the top 10 most cited researchers in medicine and frequently writes about technology in healthcare, including in his latest book, Deep Medicine: How Artificial Intelligence Can Make Healthcare Human Again.

Abraham Verghese, MD, is a critically acclaimed best-selling author and a physician with an international reputation for his focus on healing in an era when technology often overwhelms the human side of medicine.

Arthur M. Kleinman, MD, MA, is a founder of the field of medical anthropology. He has written over 40 books, including The Illness Narratives: Suffering, Healing, and the Human Condition. His latest book is The Soul of Care: The Moral Education of a Husband and a Doctor.

https://www.medscape.com/viewarticle/920514#vp_3

View video and read transcript here (Medscape, Nov 19, 2019)