Upcoming Webinar featuring Bill Novelli, Tom Koutsoumpas & Ann Monroe
Building a Movement to Transform Advanced Illness Care: Conversations with Grantmakers in Aging
Tue, Mar 26, 2013 2:00 PM – 3:00 PM EDT
Americans living with advanced illness and their family caregivers often are not asked about the care they want and are offered little help to make good decisions, creating physical, emotional and financial hardships on patients, families and caregivers.
Join Bill Novelli, Tom Koutsoumpas, and Ann Monroe as they discuss supporting and facilitating national and regional strategies to create a movement to tackle one of America’s greatest challenges – breaking through the cultural, health system and policy barriers so that people living with advanced illness receive the right care at the right time and place.
This webinar is free; please register in advance at: https://www3.gotomeeting.com/register/115965246
C-TAC National Summit Press Release
For Immediate Release
January 29, 2013
Contact:
Kendra Kojcsich, Porter Novelli
202-973-2919
[email protected]
NATIONAL LEADERS CONVENE TO IDENTIFY SOLUTIONS TO IMPROVE ADVANCED ILLNESS CARE
C-TAC convenes first-of-its kind national summit to address one of the nation’s biggest healthcare concerns
The 2013 National Summit on Advanced Illness Care: A Roadmap for Transformation hosted by The Coalition to Transform Advanced Care (C-TAC) begins today in Washington, D.C. The Summit—happening January 29-30— will tackle one of America’s greatest challenges: breaking through the many cultural, health system and policy barriers to ensure that persons living with advanced illness receive the right care at the right time and place. This summit will provide a forum where innovators in policy and advocacy as well as nationally recognized health care providers, faith leaders, patients and family members from across the nation will discuss proven models of advanced illness care that put patients, their families, and their wishes first.
“This Summit, for the first time ever, will provide the opportunity for a much needed bipartisan conversation—how to make advanced care better in America,” said Bill Novelli, Co-Chair of C-TAC, a professor at Georgetown’s McDonough School of Business and former CEO of AARP. “There is an urgent need for leaders throughout health care to come together and substantially improve care and support for people who are seriously ill. This Summit will address the gaps in the system and provide answers, by advocating for and implementing proven solutions.”
A recent National Journal survey shows 93 percent of Americans say advanced care should be a top priority for America’s health care system. The nation demands care that empowers patients to guide their care and decision-making, improves their quality of life and most importantly honors their wishes and their dignity. Research also has found that cultural and ethnic beliefs affect how people make decisions about care for advanced illness. The highest quality care for those who are seriously ill often goes well beyond a dialogue between patients and health care providers, incorporating support from faith leaders and family members, according to C-TAC.
“People living with advanced illness deserve all the support they can get during their difficult journey. They need comprehensive, high-quality, person- and family-centered care that will improve their quality of life and which is consistent with their values and needs,” said Tom Koutsoumpas, C-TAC Co-Chair and Executive Director of the Mintz Levin Center for Health Law & Policy. “That is why C-TAC members include not only major health systems but also consumer and patient advocacy groups, providers and provider organizations involved with hospice, palliative care, nursing homes, home health, and hospitals, faith-based organizations, academia, the payer community, and many others. Only by working together can we fix this dysfunctional system that is creating unnecessary obstacles for patients and their loved ones.”
“America’s sickest and most vulnerable citizens are experiencing undue challenges,” said Brad Stuart, Chief Medical Officer, Sutter Care at Home. “The time to transform how we care for people in America who suffer from illnesses such as heart disease, cancer and COPD is now. This Summit is just the start of identifying what needs to be done to improve the entire experience.”
Summit Speakers will include industry leaders such as U.S. Sen. Blanche Lincoln (D-AR); Mark McClellan, M.D., former administrator, Centers for Medicare & Medicaid Services; Judith Salerno, M.D., executive officer, Institute of Medicine; Leonard Schaeffer, former chair and CEO, WellPoint; Nancy Brown, CEO, American Heart Association; Jennie Chin Hansen, CEO, American Geriatrics Society; Susan Dentzer, editor-in-chief, Health Affairs, among many more.
C-TAC is a non-profit, non-partisan organization based in Washington, D.C., Co-Founded by Bill Novelli, Professor, McDonough School of Business at Georgetown University and Tom Koutsoumpas, Executive Director, Mintz Levin Center for Health Law & Policy. C-TAC is funded in part by grants from the Peter G. Peterson Foundation, The SCAN Foundation, the Mintz Levin law firm and the support of members. Visit http://www.thectac.org for a list of C-TAC members, the C-TAC action plan, and more information on the organization. Follow @CTACorg on twitter.
Click here for a pdf of the Summit Press Release
Book Review: Seekers of Meaning: Baby Boomers, Judaism and the Pursuit of Healthy Aging
“It is not good that we exist l’vado, cut off, isolated, withdrawn from our world and own unique self. Yet each of us, as we grow older, often looks back on our journey and reflects on those moments when we felt alone, as if we were wandering in our own wilderness, seeking community, searching for love.” -Rabbi Richard Address
In Seekers of Meaning, Rabbi Address focuses on the transitions — economic, personal, professional, social, and spiritual — that Baby Boomers within the Jewish community, many of who are returning to their religious tradition, are facing as they age.
Drawing on the Torah, Address outlines three fundamental questions that transitions in life often trigger:
- Where Did I Come From?
- Who Am I?
- Where Am I Going?
All of us want to find the answers to these questions, but we can’t find them l’vado, alone. We’re driving by our desire to find answers to reach out to others, as its only within these relationships, Address argues, that we ultimately find the answers we’re looking for.
So we are seeking a connection with others in order that we won’t find ourselves alone. As Address writes, “We, who are now moving in the autumn of our lives, search for our own sense of meaning and purpose. At times, it seems as if the questions we have outweigh the possible answers.”
Nothing defines the Baby Boomer generation more as they age, Address thinks, than the relationship they’ve entered into as a caregiver, often for their elderly parents. “We often enter this life stage unprepared and in an instant,” he writes. In these situations it’s easy to begin caring for our parents much like we do for younger children. Drawing on the Torah, Address reminds us that we must always show “deference to the old”.
We’ll go shopping, for example, at the supermarket. Mom and dad will give us a list, and we pick up the groceries on the way over for a visit. We unpack them and they ask, ‘How much?’ Our natural inclination is to say, ‘Don’t worry about it,’ think that, after all, it is the right thing to do as mom and dad may be watching their expenses. The tradition, however, cautions us against making this a habit for, in doing so, we may gradually take away our parents’ sense of self-respect, almost infantilizing them, making them feel totally dependent on us.
Address adds that there are of course no rules per se, as each situation will be different. The rule of thumb is to avoid anything that might take away the dignity of our parents.
In a moving passage, Address writes that there is sometimes a palpable sense of the sacred in our role as a caregiver for our parents.
In this new life stage of caregiving, we come face to face with the often-repeated verse in Leviticus 19, ani Adonai (I am God). There are moments of spiritual reckoning, awareness that some other power or mystery is present. They contain within them aspects of transcendence that are often frightening and almost always humbling. I speak of those quiet moments, private usually, when you are with the person being cared for. I am thinking of time spent with a parent, escorting her to a doctor’s appointment, for example. You go around to her side of the car and help her out. You grab hold of her arm, or place your arm around her shoulder to help. And in a flash of insight, you are suddenly aware that this parent has become a frail older adult; that those arms that held you and cared for you now reach out to you for caring, support, and guidance. You experience a revelation, a sense that roles have changed; and you are humbled to realize the responsibility that is now yours. Many of us have had these moments. They are sacred and filled with awe.
Sacred and filled with awe. These are not commonly applied descriptions to the caregiver’s role. Wrapped into these moments, Address sees a sense of meaning and completeness brought about by a shared care journey, where we now care for those who once care for us.
Address does not attempt to sentimentalize the caregiver’s role. Seekers of Meaning is balanced throughout with an honest account of the difficult times faced in the adjustment to new challenges and associated roles and responsibilities.
Address’s previous work (see below) shows that he is well acquainted with aging and the Jewish tradition. Yet what makes this book unique and its insights memorable are the lessons that draw directly on Address’s personal experience. As one reviewer on Amazon put it,
Seekers of Meaning, I believe, is [Address's] personal best, his life’s experiences, his education and his interaction with the hundreds of people he has communicated with, taught, counseled and shared a personal relationship. He takes us to a new stage in our lives to enter with knowledge, excitement, confidence and the hopeful outlook for a new kind of contentment and happiness.
While the author’s work draws on tradition from within the Jewish faith, the insights (as the above reviewer noted) are appropriate for anyone chasing the fundamental questions — Who am I? Where did I come from? Where am I going? — that growing older brings in tow.
- You can purchase a copy of Seekers of Meaning here
- Visit Rabbi Address’s blog for recent talks and posts on spirituality, aging well, and other issues within the Reform Judaism community: http://jewishsacredaging.com
- Richard Address is a Co-Chair of C-TAC’s InterFaith Workgroup and a speaker at the 2013 Summit on Advanced Illness January 29-30 in Washington, D.C.
About Rabbi Richard Address
Rabbi Richard F. Address is the senior rabbi at Congregation M’kor Shalom in Cherry Hill, NJ. Called to the congregation after 33 years with the Union for Reform Judaism, he previously served as the specialist and congregation consultant for the North American Reform movement in the program areas of Caring Community and Family Concerns. His work has been based on the belief that a congregation, to be a true “caring community”, must be founded on a theology of sacred relationships. (Read Rabbi Address’ blog for M’kor Shalom, “Chai from Rabbi Address.”)
A major part of Address’s work has been in the development and implementation of the project on Sacred Aging. This project has been responsible for creating awareness and resources for congregations on the implication of the emerging longevity revolution with growing emphasis on the aging of the baby boom generation. This aging revolution has begun to impact all aspects of Jewish communal and congregational life.
Rabbi Address was ordained at the Hebrew Union College-Jewish Institute of Religion (HUC-JIR) in Cincinnati (1972) and served congregations in California before joining the staff of the Union for Reform Judaism (formerly the Union of American Hebrew Congregations) in 1978. He directed the Union’s Pennsylvania Council from 1978 through 2000. In 1997 he founded the Department of Jewish Family Concerns and went full time in New York in January of 2001.
Rabbi Address received a Certificate in Pastoral Counseling from the Post Graduate Center for Mental Health in 1998 and his Doctor of Ministry from HUC-JIR in 1999. He also received his honorary Doctorate from HUC-JIR in 1997.
In January of 2007 he was awarded the “Sherut L’Am” award by the Kalsman Institute for Judaism and Health. He teaches classes in Jewish Family issues and Sacred Aging at the New York campus of HUC-JIR.
In March 2010, Rabbi Address was awarded a Best Practices in Older Adult Programs: First Place by the National Council on Aging-Interfaith Coalition on Aging.
He has contributed articles and chapters on Judaism and Aging for numerous publications including:
- Jewish Lights
- Journal of Central Conference of American Rabbis
- Newsletter of American Society of Aging’s Forum on Religion, Spirituality and Aging (FORSA)
- The Journal of Religious Gerontology
- The Jewish Forward
- “Jewish Relational Care” (chapter on “Jewish Relational Care and Healthy Aging”)
- “Aging, Spirituality and Religion, Vol 2” (chapter on “Making Sacred Decisions at the End of Life: AN Approach from Sacred Jewish Texts”)
Rabbi Address has edited and co-authored:
- “Jewish Relational Care with Healthy Aging”: in Jewish Relational Care. Jack Bloom. Haworth Press. 2006
- “Creating Sacred Scenarios: Opportunities for New Rituals and Sacred Aging”: in Religion, Spirituality and Aging: A Social Work Perspective. Harry R Moody, Ph D, Ed. Haworth Press. 2005
- “The Human Body and the Body Politic”: in Midrash and Medicine. Dr. William Cutter, ed. Jewish Lights. 2011
- “What Elders in Congregations Need From Spiritual Leaders”: in Journal of Religion, Spirituality and Aging. Vol. 32. Jan.-June, 2011
- “The Unbroken Path: Emerging Issues for the Care-giver”: in Broken Fragments: Jewish Experiences of Alzheimer’s Disease. Doug Kohn, ed. URJ Press. June 2012
- “Standing in Life Before God: Report on One Congregation’s First Steps for Creating a Congregation=Based Program on Health and Wellness” in CCAR Journal. Journal of Reform Judaism. Summer 2012
- “Contemplating A Theology of Healthy Aging”: in Healing to All Their Flesh: Essays in Spirituality, Theology and Health. Dr. Feff Levin and Dr. Keith Meador, eds. Templeton Press. Fall 2012
- “To Honor and Respect: Programs and Resources for Congregations on Sacred Aging” ( Union for Reform Judaism Press. 2005)
- “That You May Live Long: Caring for our Aging Parents, Caring for Ourselves.
- Jewish Perspectives On Caregiving” (with Rabbi Hara Person. URJ Press. 2003)
- “Caring for the Soul: R’fuat Ha Nefesh: A Mental Health Resource and Study Guide. (URJ Press. 2003)
- “A Time to Prepare”. A Practical Guide for Individuals and Families in Determining One’s Wishes for Extraordinary Medical Treatment and Financial; Arrangements. (URJ Press. 2001)
Interview with Dr. Randall Krakauer, Aetna
Interview with Dr. Randall Krakauer, Chief Medical Officer, Medicare, Aetna.
Q: There’s been a lot of buzz in the media recently around models of care that improve patient/family satisfaction while also lowering costs of care. Why do you think that now might be the time to make an impact in improving advanced illness care?
A: Now is the time for a couple of reasons.
First, we’ve (speaking of C-TAC and other stakeholders) accumulated the right groups, from health systems, health plans, community care organizations to policy makers and communication experts and many others.
Secondly, there’s heightened interest in achieving higher impact in medical care and health care coverage, especially with treatment and coverage of advanced illness care. We’ve shown that you can achieve the greatest impact when you turn informed care decisions over to patients and families to make in partnership with their clinicians and provide them with the necessary information and support to better coordinate care.
Q: What makes the 2013 Summit on Advanced Illness unique?
A: Better care management of advanced illness represents our very best opportunity for real impact on the intersection of quality and cost. There is no better opportunity. The speakers at the Summit are the pioneers who have demonstrated this impact: they’ll talk about what they did and how to replicate it.
There will also be policy makers, health economists, leaders from faith communities and caregiver advocates – these groups usually don’t get in the same room together to dialogue with clinicians about how to improve quality of care for some of the sickest and frailest people in America.
There is no propriety information here. We’re going to see innovators who want to inform others of what they’ve done to ensure that the best care is available for patients and families.
Q: Who should come to the Summit?
A: Certainly better care management for people living with serious illness is going to become increasingly expected from clinicians and system’s leaders.
If you are in an Accountable Care Organization (ACO) or another arrangement where you’re accountable for outcomes, then it would be greatly beneficial to engage in strategies to improve medical management for advanced illness.
Those presenting at the Summit have tested models of care management that have been shown to work – and we have networks, such as C-TAC, that can help you effect change in your community or institution by using best-practices from these models.
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Dr. Krakuaer is a speaker on the panel, Assessing the Benefits and Costs of Transforming Advanced Care moderated by Mark McClellan on January 29, 2013. He will be sharing new data from Aetna’s Compassionate Care program managing advanced illness.
Join Dr. Krakauer and other leaders at the Summit and help us build a Roadmap for Transformation January 29-30!
Space is limited and registration is required.
Conference: Leading Practices, June 2-4, 2013, Anaheim, CA
Transforming Care, June 2-4, 2013, Anaheim, CA Register Now! http://
Early Bird Congress registration is open!
Registration for the Supportive Care Coalition’s Fifth National Palliative Care Congress Leading Practices – Transforming Care, June 2-4 in Anaheim, CA, is open with early bird rates for all registrants. This National Palliative Care Congress will feature these plenary presenters:
- Ira Byock, MD
- Mary Ersek, PhD, RN, FAAN
- Betty Ferrell, PhD, MA, RN, FAAN, FPCN
- Diane Meier, MD, FACP
- Dan O’Brien, PhD
- Christina Puchalski, MD, MS
- Mike Rabow, MD
- Cynda Hylton Rushton, PhD, RN, FAAN
- MC Sullivan, JD, MTS, RN
Why you should attend:
- Nationally recognized experts create a vision for the next generation of palliative care
- Eight plenary presentations weave a rich tapestry of whole person centered care
- Concurrent sessions illustrate leading palliative care practices in diverse settings
- Clinicians demonstrate emerging models for expanding palliative care across the continuum
- Congress offerings integrate spiritual and ethical wisdom – helping individuals and teams reclaim vocational vitality, deepen their professional practice and create sustainable palliative care services.
For more information, please visit: www.supportivecarecoalition.
American Hospital Report on Advanced Illness Management: Part 2
The American Hospital Association has recently released its second report in the series, Advanced Illness Management Strategies. The AHA’s Board Committee on Performance Improvement produced the report, Advanced Illness Management Strategies: Engaging the Community and a Ready, Willing and Able Workforce, which focuses on:
Awareness: Communitywide strategies can significantly raise patient and family awareness in advanced illness planning and management. Appreciating the benefits and partnering with advanced illness programs sooner rather than later can make the utmost difference between “dying well” and “dying badly” and should be the draw to managing advanced illness and engaging with one’s mortality.
Workforce: The success of AIM programs is contingent upon the education and training of health care providers as the demand grows for managing multiple chronic conditions, as well as for palliative and end-of-life care. There are not enough health care professionals who are ready, willing and able to manage advanced illness with patients and their families, and there is a constant need to engage in conversations and provide guidance to more expert resources. (Quoted from the AHA’s release on the report here.)
C-TAC is proud to be featured within the report; you can find the case study on C-TAC’s provider and public engagement initiatives here. Coalition participants and members such as the Conversation Project, Gundersen Health System and Center to Advance Palliative Care are also featured throughout the report.
The first AHA report, Advanced Illness Management Strategies Part 1, is focused on how hospitals can increase access to AIM programs.
Book Review: Last Wish by Dr. Lauren Van Scoy
December 17, 2012
“The only thing we can promise is to try to reverse what’s reversible in hopes of establishing a meaningful recovery. What defines a truly meaningful recovery is different for each of us.” – Dr. Lauren Van Scoy
In her effort to empower readers and reflect upon the emotional attachments cultivated with patients and their families, Dr. Lauren Van Scoy, shares rich, meaningful personal perspectives related to the immense physical, mental and spiritual hardships one can experience during the journey through advanced illness.
In Last Wish: Stories to Inspire a Peaceful Passing, readers live vicariously through Dr. Van Scoy experiences in 5 stories dealing with the more common medical decisions we and our families may face. She writes, “Each story was chosen to demonstrate a specific concept, whether that is what CPR is truly like, what being on a breathing machine entails, what it’s like to remove someone from life support, or the possible benefits of hospice care.” Last Wish articulates the importance of thoughtful and timely preparation for end-of-life planning, the value of transparency, unity and empathy between families and physicians and the realities of suffering, the battle and the pressures placed on families.
Dr. Van Scoy is an advocate and facilitator of “Engage with Grace,” a movement designed by Alexandra Drane. Engage with Grace’s mission is to equip, empower and support people to recognize solutions in extraordinary situations.
Engaging patients and caregivers with grace is leading the charge in the effort to shift the discourse and processes regarding end-of-life care.
The Coalition to Transform Advance Care (C-TAC) is proud to feature Last Wish, a resource which complements the program mission within our Interfaith Workgroup on Spiritualty. The emotionally powerful and spiritually gripping stories help readers recognize how a person’s faith, beliefs and values inform their goals of care. More importantly, in the dimension of care treatment of spirituality is paramount. Ultimately the understanding of death as a medical event is transformed into an understanding of death as a transition that affects all aspects of life.
One final note, look out for an video update on the extraordinary story of Bruce - a Harley Davidson bike rider who’s living with serious illness that Dr. Van Scoy features in Last Wish - at the National Summit on Advanced Illness: A Roadmap for Transformation that C-TAC is hosting on January 29 and 30. For more information about the Summit and to find out how to sign up, click here.
For more information about Last Wish, visit: http://www.knowyourwishes.com/Home.html
Call to Action: Raising awareness of advance illness issues as they affect the American public and professional communities is critical. Do you have a question, book or article relating to advanced illness that you would like featured on C-TAC’s blog? Please email Brendan Sinatro at: [email protected].
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Brendan J. Sinatro, M.P.H. Public Engagement Volunteer – Behavior Change Coordinator
Brendan received his Master of Public Health degree from the George Washington University. After volunteering as a Patient Liaison with the Geisinger Medical System, he grew fascinated with the field of health promotion. Scholastic pursuits and professional experiences have equipped Brendan with a detailed understanding of the core competencies of health communication theory and practice; social marketing campaign planning, development, implementation and evaluation. He revers the rigor of data and embraces the importance of accuracy when tailoring communication platforms to execute media relation’s initiatives.
Be Part of the Transformation: 2013 National Summit
The 2013 National Summit on Advanced Illness: A Roadmap for Transformation is happening January 29-30, 2013 in Washington, D.C.
Bill Novelli presenting on the Summit at the C-TAC Member Meeting in September, 2012
This first-of-its-kind summit will address one of our nation’s greatest health care challenges — ensuring people living with advanced illness have the right care at the right time and place. The Coalition to Transform Advanced Care (C-TAC) will convene thought leaders who together can make the system simpler and easier by advocating for and implementing proven solutions.
If you represent any sector of advanced illness care – health care delivery/payment, policy, caregiving, the faith community, hospice and palliative care, or business/legal sectors, this is a can’t miss opportunity. Be part of the transformation that will map a new way forward at the national and community level.
Click here to register. Early Bird Rate Ends January 4!
Hear from
Faith-Based Leaders
- Rabbi Richard Address, Congregation M’Kor Shalom
- Peg Chemberlin, National Council of Churches
- Reverend Tyrone Pitts, Progressive National Baptist Convention
U.S. Senators (invited)
- Johnny Isakson (R-GA)
- Ron Johnson (R-WI)
- Mark Warner (D-VA)
- Sheldon Whitehouse (D-RI)
Patient & Caregiver Advocates
- Amanda Bennett, Bloomberg News
- Amy Berman, The John A. Hartford Foundation
- Nancy Brown, American Heart Association (AHA)
- Suzanne Mintz, National Family Caregivers Association
- Susan Reinhard, AARP
Employer Perspectives
- Ann Berkey, McKesson
- Brent Pawlecki, The Goodyear Tire and Rubber Company
- Neil Trautwein, National Retail Federation
- Jack Watters, Pfizer
Thought Leaders & Policy Makers
- Bruce Chernof, The SCAN Foundation
- Susan Dentzer, Health Affairs
- Chris Jennings, Jennings Policy Strategies
- Mark McClellan, Brookings Institution
- Dan Mendelson, Avalere Health
- Len Nichols, George Mason University
- Judy Salerno, Institute of Medicine (IOM)
- Leonard D. Schaeffer, University of Southern California
- Tevi Troy, Hudson Institute
Media and Communications Experts
- Terry Clark, UnitedHealth Group
- Alexandra Drane, Engage with Grace/Eliza Corporation
- Bill Hanley, Twin Cities Public Television
Health Systems and Community-Based Program Leaders
- Bill Borne, Amedisys
- Jeff Burnich, Sutter Health
- Christy Whitney, Hospice Innovations Group
Professional Education Experts
- Jennie Chin Hansen, American Geriatrics Society
- Richard Payne, Duke Institute on Care at the End of Life
- Cynda Rushton, Johns Hopkins University
- Bob Wolf, Healthcare Chaplaincy
Hospice, Palliative, and Home Care Pioneers
- Randy Krakauer, Aetna
- David Longnecker, Association of American Medical Colleges (AAMC)
- Diane Meier, Center to Advance Palliative Care (CAPC)
- Don Schumacher, National Hospice and Palliative Care Organization (NHPCO)
- Brad Stuart, Sutter Health
Co-sponsors include: The American Heart Association (AHA), American Society of Clinical Oncology (ASCO), Institute of Medicine (IOM), National Hospice and Palliative Care Organization (NHPCO), Pfizer, American Cancer Society Cancer Action Network (ACS CAN), Cambia Health Foundation, and Leonard D. Schaeffer.
Where? The Institute of Medicine’s National Academy of Sciences Building, 2101 Constitution Avenue, NW, Washington, DC 20148
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Space is limited – register now at www.wciconferences.com/
Report from InterFaith Workgroup Roundtable
On November 30th, 2012, the C-TAC InterFaith Workgroup met to discuss the mission, goals, and objectives of a faith-based initiative within the Coalition. Kaiser Permanente Center for Total Health hosted the Workgroup Roundtable.
Rev. Tyrone Pitts and Rabbi Richard Address, Co-Chairs
The mission of the Workgroup will be
- To transform advanced illness care by improving the quality of spiritual care across settings of care, recognize how a person’s faith, beliefs and values inform their goals of care and treat spiritual inclusion as an urgent and essential dimension of this care, while moving away from an understanding of death as a medical event to an understanding of death as a transition which affects all aspects of the patient.
“I’ve been a nurse for over 30 years. What I see when we’re caring at the bedside near the end of life, regardless of religion…the ill person wants us to be good listeners, they already know how they want – doesn’t matter if you’re rich or poor, they want that compassionate care, listen to them and their will guide you; it maybe reading the bible to them, it might be sitting their and holding their hands.”
- Linda Robinson, Stoddard Baptist Nursing Home
Participants were in agreement that their mission should include
- Empowering patients and family caregivers;
- Inclusiveness of all people, regardless of culture or religion; as part of this, advocating for social justice for communities and cultures which have traditionally received sub-par care;
- Being the conscience and moral voice for quality care for all in the advanced care movement;
- Be holistic, working with care providers of all kinds, including clinicians and non-traditional healers;
“Spiritual care is going to be necessary for our society, because what’s coming with the growth of the numbers of people needing advanced illness care is going to be really hard. Families are going to collapse under the weight. Our Workgroup needs to advocate on behalf of the caregivers and families outside of and within C-TAC.”
-Gail Anderson, Minnesota Council of Churches
The Goals of the Workgroup will be to
- Promote individual choice
Rita Chow, Workgroup Member
- Advocate for policy change that will empower all Americans to make informed choices regarding advanced illness according to their own traditions.
- Help provide competent, coordinated, culturally sensitive spiritual care for persons with advanced illness across settings of care.
- Provide spiritual care competencies for clinicians and other health professionals.
- Collect and provide spiritual care resources (assessment tools, educational materials etc) for faith communities caring for persons with advanced illness and caregivers.
- Connect and provide identification of national experts/organizations committed to advancing
spirituality as an essential dimension of care. - Share best practices and innovations in providing spiritual and religious support to people
with advanced illness and their caregivers.
“There are many powerful streams coming together in health care reform. Doing the right thing is no longer has to be just about cost savings. Part of our job [as a Workgroup] is to tie the deep meaning of spirituality and serious illness into real health care reform.”
-Brad Stuart, M.D., and Chief Medical Officer at Sutter Health
What Will Success Look Like?
- Clinicians and other health care professionals caring for persons with advanced illness will be credentialed based on their demonstrated ability to provide compassionate high quality whole person centered care and attend to the physical, psycho-social and spiritual domains of care.
- Clergy and faith communities will help their members become more health care literate and invite discussion and dialogue about how their faith, beliefs and values inform their health care choices, especially at the end of life.
Close and Next Steps
Rev. Pitts put forward the theme of healing as an important area for the Workgroup to examine at the National Summit in January; specifically as the Workgroup relates to the medical community, which often focuses exclusively on curing. Rabbi Address closed the roundtable with a short Jewish prayer, “Heal us O Lord, and we shall be healed. Save us O Lord, and we shall be saved.”
Roundtable Participants
- Rabbi Richard Address, Rabbi, Congregation M’kor Shalom
- Paulanne Balch, Family Practice Physician Lead, Kaiser Permanente
- Kenyon C. Burke, Consultant, Kenyon Burke Consulting; Former Associate General Secretary, National Council of Churches; & Former Associate Director of Programs, NAACP
- Rita Chow, former Director, National Interfaith Coalition on Aging
- Charity Harrington, Nurse Educator, Stoddard Baptist Nursing Home
- Remy Johnson, Administrator, Stoddard Baptist Nursing Home
- Dennis Olaniyi, Director of Nursing, Stoddard Baptist Nursing Home
- *Angela Overton, Director, H.O.P.E. Ministry and Associate Minister at Green Castle Baptist Church
- *Richard Payne, MD, Professor of Medicine and Divinity, Duke Institute for Care at the End of Life
- *Tina Picchi, MA, BCC, Executive Director, Supportive Care Coalition
- Rev. Tyrone Pitts, Ecumenical Officer & General Secretary Emeritus, Progressive National Baptist Convention
- Linda Robinson, Executive Clinical Director, Stoddard Baptist Nursing Home
- Rev. Jon Shematek, Chief Medical Officer, CareFirst BlueCross BlueShield & Deacon, Cathedral of the Incarnation
- Indu Spugnardi, Director, Advocacy & Resource Development, the Catholic Health Association of the United States
- Ashraf Sufi, former President, Islamic Medical Association of North America (IMANA)
- *Bob Wolf, JD, Senior Vice President, Healthcare Chaplaincy
*Participating by phone
For more information about the National Summit in January or the InterFaith Workgroup, please email Jon Broyles at [email protected]
A Bitter-Sweet Season: Caring for Our Aging Parents — Jane Gross
A Bitter-Sweet Season captures the raw emotion, physical hardships, the power of family dynamics and challenges experienced when making difficult medical and life decisions in the care of an ailing parent. Yet, Jane Gross provides a refreshing perspective on a topic many are reluctant to engage: becoming your parent’s parent in the end-of-life management process. Utilizing the strength of personal narratives and storytelling, the author shares her triumphs and shortcomings her family encountered during the final 3 years of her mother’s life. 
Ms. Gross’ book is rich in anecdotal messages and well researched information related to caregiving responsibilities. By integrating lessons from memorable experiences with the nuances of taking care of an aging loved one, she creates what she calls her own “Caregiving for Dummies”. Ms. Gross’ first-hand guide covers many unforeseen obstacles to elder care, including: identifying the appropriate care facility when moving loved ones closer to home, the importance of having a primary care physician, and what is or is not covered by Medicare in assisted living programs.
This decision-making process is daunting and can cause immense stress on individuals and their families. A Bitter-Sweet Season offers a perspective into the trials and tribulations of caring for aging parents and loved ones. Emphasized throughout the work is the importance of preparation, planning, and effective communication, all of which ultimately benefit you, your sibling(s), care providers and most important the ill person. These experiences reveal that taking each day one at a time is integral to maintaining balance and control. Enjoying the moments together, embracing times of humor and joy are equally important as the more challenging times; and Ms. Gross shows that even the challenges can be opportunities to fortify existing relationships and offer advocacy opportunities to get higher-quality care for your loved one. As Ms. Gross writes, “most bad decisions are made in the heat of a crisis, when alarm and ignorance collide. I can tell you that it is usually possible to slow things down and demand the time to consider alternatives calmly and deliberately.”
A Bitter-Sweet Season is not exclusively a guide to caring for our parents but ourselves too. A myriad of topics in the process of caring for ailing parents and loved ones are included but not limited to medical issues, health services, financial responsibilities, quality of life, spiritual/religious needs and familial relationships.
Join the hundreds of thousands of monthly supporters and visit: The New York Times-The New Old Age http://newoldage.blogs.nytimes.com/author/jane-gross/ for more on aging.
Call to Action: Raising awareness of advance illness issues as they affect the American public and professional communities is critical. Do you have a question, book or article relating to advanced illness that you would like featured on C-TAC’s blog? Please email Brendan Sinatro at: [email protected].
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Brendan J. Sinatro, M.P.H. Public Engagement Volunteer – Behavior Change Coordinator
Brendan received his Master of Public Health degree from the George Washington University. After volunteering as a Patient Liaison with the Geisinger Medical System, he grew fascinated with the field of health promotion. Scholastic pursuits and professional experiences have equipped Brendan with a detailed understanding of the core competencies of health communication theory and practice; social marketing campaign planning, development, implementation and evaluation. He revers the rigor of data and embraces the importance of accuracy when tailoring communication platforms to execute media relation’s initiatives.