End-of-life care is the term used to describe the support and medical care given during the time surrounding death. The care provided does not happen just in the moments before breathing finally stops and a heart ceases to beat. Rather, an individual may be living, and dying, with one or more chronic illnesses and require care for days, weeks, and sometimes even months. Personal preference, family, culture, faith, and economics all intersect in this journey.
There are many discrepancies between individual’s wishes and their actual end-of-life care outcomes; the majority of Americans die in institutional settings despite their wishes to die at home (American Psychological Association). This is just one indicator of the gap between patient’s goals and desires and the current state. This Expert Panel will focus on best practices in patient-centric end-of-life care.
We are pleased to welcome the following group of Expert Panelists to discuss end-of-life care conversations:
• Rachelle E. Bernacki, MD, MS, Associate Director, Serious Illness Care Program, Ariadne Labs; Director of Quality Initiatives, Division of Adult Palliative Care, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute and Brigham and Women’s Hospital
• Nathan Kottkamp, MA, JD, Founder and Chair of National Healthcare Decisions Day; Partner, McGuireWoods LLP
• Christian Ntizimira, MD, Medical Officer; Advocate of Pain Control Access; Palliative Care Expert and Educator; Pain Policy Consultant; Member Founder of Rwanda Palliative Care and Hospice Organization (RPCHO); Scientific Advisory Committee of Harvard Global Equity Initiative (HGEI)
• Lisa Kennedy Sheldon, PhD, APRN-BC, AOCNP, Associate Professor, College of Nursing and Health Sciences, University of Massachusetts Boston; Editor, Clinical Journal of Oncology Nursing, Oncology Nurse Practitioner, St. Joseph Hospital; Associate Member, Cancer Risk and Disparities, Dana-Farber/Harvard Cancer Center
Our panelists will offer insight into the following questions:
1. What are the best practices for determining and understanding the patient's goals of care? What is the provider’s role?
2. How do you have end-of-life conversations in different care settings, and with different populations? How do you ensure cultural competency and consider health literacy skills when discussing end-of-life care?
3. What role, if any, should cost have in determining appropriate end-of-life care? How should providers broach this topic with patients?
4. What tools can be used to help patients have end-of-life conversations with both their loved ones and providers?
5. How do you generate demand in this area among target populations? What are ways to empower providers and patients to have these conversations, and what does success look like?
This panel is part of our US Communities Initiative, which is supported by the Agency for Healthcare Research and Quality (AHRQ), and aims to foster discussions between health care professionals on evidence-based practices, and translating these practices across disparate settings, to improve health care delivery in underserved populations in the US.
In an effort to understand the impact of our Expert Panels, we’ve created a short (4 question) survey. Your responses are greatly appreciated—please take the survey before the discussion begins: https://www.surveymonkey.com/r/NJLFHCY
We look forward to a rich discussion next week – please join the conversation and share your questions or comments!