Death By Design

Nathan is no stranger to the world of healthcare.  Nathan is a lawyer at McGuire Woods where he concentrates in healthcare law, including federal and state regulatory compliance, patient rights and clinical ethics. 

He lives in Richmond, Va. (My hometown) with his wife and 2 young children.

And last but not least, Nathan is the founder and creator of National Healthcare Decisions Day.  It’s a grassroots movement to get everyone talking about their own death by encouraging individuals to fill out the documents that support wishes at the end of life.  Every year on April 16th, Nathan and thousands of others nationwide take to the streets to bring awareness to Advance Directives.

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Rebecca Sudore, MD, FAAHPM, Professor of Medicine, Geriatrics Division, University of California, San Francisco.

Dr. Sudore is a geriatrician, palliative medicine physician, and advance care planning researcher. She also directs the Innovation & Implementation Center in Aging & Palliative Care (I-CAP) and the Vulnerable Populations for Aging Research Core of the NIA-funded Pepper Center.

Dr. Sudore is passionate about making medical information easier to understand and helping people make informed medical decisions.

Dr. Sudore has dedicated her research program to making medical information easier for patients and their families to understand. She published the first prospective study demonstrating the effect of limited literacy on mortality in the elderly, and has shown that elders with limited literacy have greater difficulty making medical decisions for informed consent and advance care planning. She has also designed and tested an informed consent process for patients with limited literacy and an advance directive that is both literacy and culturally appropriate. Both interventions have been shown to benefit patients - particularly those with literacy and/or language barriers. Even though her low-literate advance directive has been translated and widely disseminated, further research with patients and surrogate decision makers helped her realize that advance directives alone are not enough. In 2010, she published a study in the Annals of Internal Medicine calling for a shift in advance care planning from DNR/DNI checklists to preparing patients and their loved ones for medical decision making. Her current research program is focused on designing and testing interactive, web-based interventions to prepare patients and their surrogate decision makers to make difficult medical decisions.

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Stephanie is an Intuitive Channel and Spiritual Guide/Coach who offers Individual and Group Readings via phone, Skype, or in-person. Stephanie has trained under the mentorship of Sally Baldwin and Sonia Choquette. Stephanie’s sessions have been described as “healing”, “magical”, “transformative”, “powerful”, “life-changing”, “affirming”, “peaceful”, and “compassionate”. Her clients highly recommend her to their friends and family. Stephanie’s warmth, humor, and compassion are three strengths that her clients highly value. She has the ability to put anyone at ease. She takes the time to process and explain messages so her clients may fully understand and integrate the information they are receiving.

Stephanie’s messages are always of the highest vibration as she only tunes into the highest level of loving energy and guidance. She is able to channel love and healing to those who are in pain and/or experiencing loss as well as offer spiritual coaching/guidance to those who are interested in making changes in their lives. Stephanie’s Guides are humorous and full of light so her sessions generally involve much laughter and evoke positive feelings. She cares deeply for every client and most of her clients are regular repeat customers.

Stephanie helps people find clarity in their lives by providing insight through her channeling and coaching gifts. She believes we all have the innate ability to channel and connect to our Higher Selves and our divine nature. Stephanie feels it is her role to support her clients in finding their inner voice and trusting their inner wisdom.

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Carolyn Jones is an award-winning photographer and filmmaker who specializes in telling stories that shed light on issues of global concern. From people “living positively” with AIDS to women artisans supporting entire communities and nurses on the front lines of our healthcare system, Carolyn has devoted her career to celebrating invisible populations and breaking down barriers. She founded the non-profit 100 People Foundation which creates educational films and curricula and has students participating in thousands of schools in over 90 countries worldwide. Her most widely acclaimed book publications include Living Proof: Courage in the Face of AIDS and The American Nurse, which led to a feature documentary included in the U.S. State Department’s American Film Showcase. Jones’ career was punctuated by two brushes with death: first, running out of gas in the Sahara as a race car driver, and second, a breast cancer diagnosis. Defining Hope, is the culmination of a journey investigating how we can make better end-of-life choices.

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Dying in the 21st century is complex, and as we enter the third decade we continue to experience massive shifts in our way of life, not only in politics and economics but in health. The health challenges of the 21st century range from climate and ecological breakdown and its inevitable effects on our individual and collective health; the intensification of a global mental health crisis; the rise of antimicrobial resistance and ageing populations declining over longer periods with neuro-degenerative diseases such as Alzheimer’s. All of this is placing unprecedented strain on our existing models of care. Is the problem, as Madeleine Albright once put it, the fact that “we are taking 21st century challenges, evaluating them with 20th century ideas and responding with 19th century tools?”

The late-20th century idea of managing health, death and dying through personalised care buckles under the weight of necessary interaction with various health and care systems formed from 19th century models of care, such as the charitable community hospice or the disease-focused hospital. These institutions served us well when being in the community meant we would receive much poorer care, or lower our chances of survival when we were ill, but this has changed. As Allan Kellehear has pointed out, people spend only 5% of their time at the end of life with healthcare professionals. With more people dying in care homes, the number is set to double to around 40% in 20 years time. This shift means that home carers will need to deliver nearly 70 hours of care per week in the last three months of life.

In order to meaningfully transform our relationship with death and dying – to make it more human-centred, socially-connected and interconnected – we need to take a more relational approach to end of life that encompasses the wider, non-medical ecosystems of care. In other words, we need to take a systemic approach to end of life care.

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Elizabeth began her career in healthcare as a Crisis Intervention Volunteer in the Emergency Department atthe Toronto East General Hospital.

Wanting to further support individuals and families facing crisis and complex illness, Elizabeth started working in General Internal Medicine at the Toronto Western Hospital in 1999. Inspired by the emotional aspects of caring, in 2000, she joined the Psychosocial Oncology Program at the Princess Margaret Cancer Centre in Toronto where she supported individuals and

families following diagnosis, through to end-of-life.

In 2002, Elizabeth was privileged to become the Mirst Palliative Social Worker at the largest cancer treatment centre in Canada, and was proud to be part of the interprofessional team on the Acute Palliative Care Unit from its inception.

As the designated Palliative Social Worker at the Cancer Centre, she specialized in

therapeutic interventions with individuals and families on the Acute Palliative Care Unit and in the Outpatient Palliative Clinics as they faced complex illness, uncertainty and grief.

Grateful for the experiences of working in Acute Palliative Care, but wanting to broaden access to Palliative Care in the community, Elizabeth launched her private practice in 2015, offering psychosocial support to individuals and families of all ages facing complex illness, dying, grief and bereavement.

An experienced educator, Elizabeth highlights the value of compassion and communication in the context of coping with complex illness, grief and loss. She teaches courses and workshops to the general public, health science learners and healthcare professionals and collaborates on numerous local, regional, provincial and national Hospice Palliative Care initiatives. She has examined access to care and quality of life with Mindings published in peer-reviewed journals. Elizabeth is an Assistant Clinical Professor (Adjunct) with the Department of Family Medicine, Division of Palliative Care, Faculty of Health Sciences at McMaster University.

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Torrie use to lead the development and implementation of programs and processes at Blue Shield of California and Care 1st Health Plan that strive to improve quality of life for individuals with serious or life-limiting illness and their families. Mindful of the bridge between payors, providers, and patients - heightened by her perspective as a two-time cancer survivor, she has led a variety of successful palliative care initiatives including benefit design, case management, caregiver support, and policy and engagement efforts.

Torrie also has a moving personal story that has inspired her passion for palliative care. 

Her personal story will touch your heart, empower your spirit and inspire you to live boldly every moment of every day.

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The National Hospice and Palliative care Organization (NHPCO) has selected Edo Bannach, JD, as it next president and chief executive officer. Edo succeeds J. Donald Schumacher, PsyD, who has led the organization since 2002.

As a partner in the firm of Gallagher, Evelius & Jones in Baltimore, Edo previously served as deputy director of the Medicare-Medicaid coordination Office at the Center for Medicare & Medicaid Services (CMS) and associate general counsel at the Visiting Nurse Service of New York.  Edo holds a B.A. from Binghamton University and a J.D. from the University of Pennsylvania Law School.  Prior to attending law school Edo worked for the New York City Department of Homeless Services and Mayor’s Office of Operations.

“With the aging of the Baby-Boomers, our nation is experiencing an increase in the need for hospice and palliative care services.” Edo states. “What began 50 years ago as a grassroots movement to better care for the dying is now an integral part of the U.S. health care landscape and the expansion of community –based palliative care services provides further opportunities to ensure we are providing the best possible care for those facing serious and life-limiting illness.”

National Hospice & Palliative Care Organization is the oldest and largest membership association working on behalf of hospice and palliative care providers and professionals in the U.S.

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Caleb Wilde is a six-generation funeral director and writer of a popular blog centered on death, dying, and funeral arrangements, which Time Magazine called a “must read”.  Confessions of a Funeral Director: How the business of Death Saved My Life reflects on mortality and the powerful lessons death holds for every one of us.

Death.  It happens to everyone, yet most of us don’t want to talk about our final chapter of existence Caleb Wilde intimately understands this reticence and fear.  The son of an undertaker, he hesitated to embrace the legacy of running his family business.  Yet he discovered that caring for the deceased and their loved ones profoundly changed his faith and his perspective on death – and life itself. “Yes, death can be bad.  Yes, death can be negative,” Wilde acknowledges, “but it can also be beautiful.  And that alternate narrative needs to be discussed.”  Wilde engages in a thoughtful and poignant conversation to push against the death negative narrative and to help us see the end of life in a positive and liberating way.

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Kimberly D. Acquaviva, PhD, MSW, CSE is a tenured faculty member at the George Washington University School of Nursing. As a social worker teaching within a school of nursing, her scholarship is interdisciplinary and collaborative. Her scholarly work focuses on LGBTQ aging and end-of-life issues, and her clinical work has been with patients and families facing life-limiting illnesses in both hospital and hospice settings. 

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Dr. Acquaviva has a Ph.D. in Human Sexuality Education from the University of Pennsylvania Graduate School of Education, an M.S.W. from the University of Pennsylvania School of Social Policy and Practice, and a B.A. in Sociology from the University of Pennsylvania College of Arts and Sciences. She is an AASECT-Certified Sexuality Educator. 

Kimberly D. Acquaviva, PhD, MSW, CSE, is both Founding Faculty at GW Nursing and the first non-nurse to receive tenure at the school. As a social worker teaching within the school, Dr. Acquaviva’s research and scholarship are interdisciplinary and collaborative. 

Dr. Acquaviva is nationally known as an innovator and authority on lesbian, gay, bisexual, transgender, queer and/or questioning (LGBTQ) aging and end-of-life issues. She is the former Co-Chair of the American Society on Aging’s LGBT Aging Issues Network (LAIN) and she served as one of four LGBT aging researchers responsible for overseeing the development, implementation and analysis of Still Out, Still Aging: The MetLife Study of Lesbian, Gay, Bisexual, and Transgender Baby Boomers, a national survey of 1200 lesbian, gay, bisexual and transgender baby boomers and 1,200 of their heterosexual counterparts. Dr. Acquaviva developed the content, script and storyboards for “Aging and End-of-Life Issues in the LGBT Community” for the Hospice Foundation of America’s Centers for Medicare and Medicaid Services (CMS)-funded online course as part of a national education/outreach initiative on hospice care. She serves on the editorial boards of several refereed journals including Sexuality Research and Social Policy, Journal of Gay and Lesbian Social Services, and Journal of Ethnographic & Qualitative Research. Her book, LGBTQ-Inclusive Hospice and Palliative Care: A Practical Guide to Transforming Professional Practice, was published by Harrington Park Press and distributed by Columbia University Press in April 2017. Learn more about the book.

In addition to her work in the field of LGBT aging, Dr. Acquaviva is a leader and innovator in the development of technology-facilitated educational innovations for health care providers, serving as both lead author and co-investigator of The National Emergency Medical Services Preparedness Initiative, a $4.7 million federally-funded training and policy initiative, as well as project manager for The National Nurse Emergency Preparedness Initiative (NNEPI), a $2 million federally funded web-based training initiative designed to increase nurses’ awareness of strategies for preparing for, responding to and recovering from emergencies and disasters. More than 28,000 nurses have completed the NNEPI online course to date.

Dr. Acquaviva's policy and advocacy work at the Federal level had made tangible advances in funding for aging research. Dr. Acquaviva recently completed a term as Special Government Employee (SGE) on the National Advisory Council on Aging (NACA), advising the Secretary of the U.S. Department of Health and Human Services, the Director of the National Institutes of Health, and the Director of the National Institute on Aging on its mission. Prior to her appointment to the NACA, Dr. Acquaviva completed a two-year term as Chair of the Friends of the National Institute on Aging, a broad-based coalition of almost 50 aging, disease, research, and patient groups supporting the mission of the National Institute on Aging. In her capacity as Chair, Dr. Acquaviva led the coalition in efforts to advocate on behalf of the NIA through the annual congressional budget and appropriations process and promote NIA research activities by sponsoring briefings for congressional staff. Regarding this work, President and CEO of the Alliance for Aging Research Sue Peschin writes that Dr. Acquaviva "is a politically astute advocate for aging research, and led the way to an increase in funding in the President's budget for Alzheimer's research at the NIH by $130 million, by systematically enlisting support from the White House, NIH, and Congress." The founder of the Alliance for Aging Research, Dan Perry, writes that Dr. Acquaviva "performed superbly... advocating for the science-based agency before Members of Congress and staff, media, and other key stakeholders" and "is recognized by her peers as a leader in the science and public policy realms of medical and social gerontology."

Kimberly is a professor at the University of Virginia in the Nursing Department.

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