In 2007, a year after Palliative Medicine became an approved medical subspecialty, you started an award-winning palliative care program at Stony Brook University Hospital. Can you walk us through that experience as an innovator?
During the first six months of starting Stony Brook’s first palliative care consultation service, I sometimes had to spell the word “palliative” for my colleagues who had never heard of the concept:
“Pall what?” they would ask.
“P-a-l-l-i-a-t-i-v-e Care” I would respond with a gentle tone.
I would then recite a 30-second “elevator” speech about how palliative care aims to support patients throughout a serious illness, regardless of the prognosis. Then came the silence, sometimes more questions, and then, sometimes, this would lead a colleague asking me to see their patient. It was a slow build, patient by patient, in gaining trust.
About 20 years of national foundational work in palliative care program development had been accomplished before the official 2007 subspecialty designation. This work (by many people) provided me with a blueprint for building palliative care infrastructure at Stony Brook Hospital. I wrote policies, collaborated on creating templates and protocols for our medical ICU and other essential programs. Patient education and brochures were distributed. I gave out hundreds of pocket cards to staff on the criteria for calling a palliative consult. I delivered many medical grand rounds, ran teaching sessions for nurses and social workers, and developed curriculum for trainees. Then there were numerous meetings with the “C” suite administrators making the case for palliative care expansion. There were many programmatic successes along the way and initiatives that didn’t work or resonate with patients and families.
During the 13 years I was the Palliative Care Director at Stony Brook; my audacious hope was for every patient and family who needed it to have access to palliative care assessment. Symptom management, social support, spiritual care, and family care should be included in the medical plan of every seriously ill patient. My goal was to build a sustainable approach to palliative care programming that would last beyond my tenure at the institution. I wanted Stony Brook Hospital to own palliative care as a mission and mandate.
Since 2019 you have been a Palliative Care educator and consultant – how far have we come in educating clinicians in the concepts of palliative care across the spectrum of their careers? Is there a career stage that you focus on or believe is most important?
I currently work as an educational and programmatic consultant for the National Center for the Equitable Care for Elders (NCECE) based at Harvard University. Their focus is on assisting federally funded community health centers in implementing health programs for community-dwelling older adults. The work, for me, has been an education on how critical community-based health programs are in serving older adults.
Reflecting on my career path to becoming a palliative care physician and educator, I turn to a formative experience I had as a student rotator during medical school at a community-based inpatient hospice. My days at the inpatient unit were mostly spent sitting at the bedside of someone dying. I was taught how to listen with intention and presence. I learned how the impacts of people’s lives, beyond the illness, affect how they process death and dying. The clinical staff demonstrated interdisciplinary care.
This frame of care has stayed with me throughout my career. The experiences and role models we have at the beginning of our careers are critical. While most of my early training was in internal medicine and primary care, I am sure that the hospice experience as a medical student allowed me to have the courage to shift into palliative care when the opportunity presented itself.
Palliative care educational programming nationally has focused chiefly on building curriculum infrastructure for medical trainees in hospitals since the training gaps have been so stark in inpatient settings. More recently, palliative care education has focused more on clinical providers in outpatient settings such as in Community Health Centers. My goal in working with health providers in mid-career and beyond in outpatient settings is to help them develop their sense of role modeling and educational leadership, like I had as a trainee years ago.
How has mentorship played a role in your career and life both as a mentee and mentor?
I credit fantastic mentorship throughout my career as helping me to navigate the medical profession’s twists, turns, and stresses. It is crucial, I believe, to actively seek out formal mentorship and develop informal collegial relationships that can serve to inform professional growth. Most importantly, to interact and learn from colleagues outside our professional silos.
My most significant period of growth as a new palliative care physician, for instance, came from sitting through countless family meetings with our team social worker and chaplain. They were masters at receiving and responding to family concerns. They used humor, empathy, and their training to usher families through difficult conversations that seemed intractably stuck in anger or pain to my inexperienced self. These informal mentors shaped my approach for my whole career. However, this kind of mentorship can only be received and internalized when the mentee has an attitude of openness, respect, and wonder.
Cultivating my role as a mentor for my colleagues has been a gratifying part of being an experienced palliative care doctor. I believe giving back in mentorship relationships is an obligation of the profession. It can also help, I think, others and oneself navigate burnout and the general challenges of being a health provider. Laughing together also really helps.
As an educator, how important do you feel it is to discuss and mentor students and residents on issues and matters related to Advance Care Planning?
Very important. The biggest mistake made by providers about advance care planning is that the discussions about the “what ifs” occur after treatment failures: when “nothing more can be done”. Advance Care Planning, when delivered expertly, recognizes shifting goals as serious illness evolves. Every juncture: beginning, middle, and end of a serious illness should include discussing patient/family wishes and values. These discussions should be normalized as part of routine care and not left to be done in a crisis by an emergency room doctor. Of course, this requires skills and knowledge on how to discuss advance care planning well. It should be part of every medical curriculum.
You spent a yearlong residence as a congressional fellow working for the U.S. Senate Committee on Finance developing opioid legislation. What did that experience teach you?
I was lucky to receive a grant to be a Health & Aging Policy Fellow in 2017. The fellowship facilitated a position as a congressional fellow in D.C. under the auspices of Senator Ron Wyden on the Senate Committee on Finance. My experience as a congressional health fellow helped me understand the extent that frontline health care is impacted by policy, especially related the of lack of connectivity across the continuum of care; often mirrored at these highest levels of health care policy-making.
My interest in working in health policy was related the years I spent as the “Physician Champion” in a Palliative Care – Medical Legal Partnership (or PC-MLP). PC-MLP work focuses on addressing major sources of financial-legal-social problems surrounding legacy planning, guardianships, future planning, access to care, next step in care and shoring up of resources for patients with serious illness. As a palliative care physician, I was already acutely aware of the intense suffering and adverse impact that unresolved non-medical issues can have on patients and families who are confronting serious illness. The implementation model for a hospital based MLP consists of real time legal work that addresses non-medical issues that complicate the patient’s medical treatment plan. Patients receive a free bedside consultation with an MLP attorney who has no connection to the hospital’s legal counsel. When complicated health related legal-financial problems are addressed, the medical care team can more effectively tackle exigent health problems.
My work implementing an PC-MLP reflects my approach to health advocacy, which starts with insights from direct patient care experiences that are applied to build a model for system change (not the reverse, as is often the case). I have learned to see patterns of problems in frontline care that I know can only truly be solved by system-level solutions that change health policy and health law both locally and nationally.
Do you think legislation and policy going forward will make Palliative Care more accessible? Do you have thoughts on what that model should look like?
I would like to see more palliative care policies constructed to support the invisible, unacknowledged work of paid (and unpaid) home care professionals. While medical care is essential, keeping someone in their lives and communities throughout a debilitating serious or chronic illness is often about supporting the work of caregivers. Excellent health policy can change the paradigm of how we think about home health professionals’ essential work by designing payment structures and educational standards that support networks of highly trained, respected, and well-paid home care workers.
How has your work as an educator in this field changed and evolved because of the COVID pandemic?
Perhaps as a silver lining during an otherwise tragic time, the COVID pandemic has opened opportunities to develop quality online programming to reach providers that may otherwise not be able to participate in educational offerings. Online education may also be key, going forward, in educating home care workers and unpaid family caregivers.
Recently you published an exquisite piece for JAMA Neurology on the backstory of your mother and caregiving during COVID. Will you share a little bit about the impact of that story here?
The piece is mainly about my experience in navigating the COVID pandemic as the doctor-daughter of my 92-year-old mother with dementia. It tracks a roller coaster ride of good intentions and unintended consequences. I hope that the piece resonates with all the family members and caregivers who tried to protect their loved ones during the pandemic.
The article can be free accessed online at:
Hallarman L. The Great Escape—A Physician Confronts Family Caregiving During the COVID-19 Pandemic. JAMA Neurol. 2021;78(7):791–792. doi:10.1001/jamaneurol.2021.1170
You followed that up with a guest essay for the New York Times on what you’ve learned over a lifetime of caring for the dying. How has writing in your own voice helped you process, integrate, and access your career work?
My recent experience as a family caregiver has informed my desire to write about doctoring from a personal perspective. Writing, journaling, and storytelling is an excellent way to connect with others and process life experience. I encourage everyone to do it.
Are you working on any research, projects, or legislation currently that you’d like us to know about?
I would like to remind everyone of the power of being a constituent. Write and meet with your local and state congressman about your ideas, concerns, and priorities about health care in your community. It has more power than you may realize. I learned that when I worked as a congressional health fellow.
If people would like to reach you directly for additional information or assistance, how would they do so?
I can be contacted by email at email@example.com.