You Don't Have to Believe in Heaven to Find Life after Death

Gary S. Fink, D.Min., is a pastoral counselor who specializes in bereavement, loss, and life-limiting illness. He serves as chaplain at Montgomery Hospice in Rockville, Maryland, and as project coordinator for the Montgomery Hospice Dementia Initiative, providing education and training for professional caregivers and families of people with dementia. Rabbi Fink writes in the Religion section of the Huffington Post about the different concepts of life after death and the ways the dying can leave a legacy.

Legacy can refer to the totality of a person's life, or to the impact or influence of our lives in the world. For those near the end of life -- and for their loved ones -- legacy building offers powerful comfort at the end of life. It provides a way to ensure a continuing presence in this world and to leave something meaningful behind.

Psychologist Erik Erikson hypothesized that a late stage of personal development is generativity: the need to create a positive legacy that lives on after death -- to leave a part of the self to future generations to help guide their lives.

Legacy building provides a way to address fundamental spiritual questions: "How have I made a difference in the world?" "What is the value of my life?" "What is my place and purpose in the universe?

This post is adapted from Living with Grief^®: Spirituality and End-of-Life Care, available from the Hospice Foundation of America's bookstore. This book is a companion piece to the Spirituality and End-of-Life Care educational program.

HFA is offering a series of webinars for organizations that address aspects of spirituality at life's end in greater depth. Learn more.

Helping Children Spiritually Cope with Dying and Death

HFA Senior Consultant Kenneth J. Doka, PhD, MDiv, writes in the Religion section of the Huffington Post about helping children spiritually cope with death and dying.

As children encounter illness, loss and grief -- whether their own or someone close to them -- they seek to understand those events and to make sense of their experiences. This inevitably is a spiritual process as they turn to their beliefs, faith narratives, rituals and practices. They may not yet have the cognitive capacity to reach conclusions, yet they yearn for an explanation of events that are sometimes difficult, if not impossible, for even adults to answer. Their questions may show innocence and naiveté. For example, when her maternal grandmother died, my 3-year-old granddaughter took comfort from the belief that even though her grandmother was no longer physically present on earth, she would watch over her from heaven. However, this led to a very practical concern: Would her grandmother be able to see her on the toilet -- a potent issue as she was becoming toilet trained? We reassured her that her Grandma would not look at her in these very private moments.

Children as young as 2 or 3 years old are trying to make sense of their world, and inevitably they are encountering their spirituality. Illness, grief and loss are often part of their worlds as well, so their spiritual development helps shape how they grapple with issues for which they want a concrete explanation. Often it is these questions -- Why did grandma have to die? Why is there illness? What happens to you after you die? -- that spur a child's interest in spiritual questions and explanations.

This post is adapted from Living with Grief^®: Spirituality and End-of-Life Care, available from the Hospice Foundation of America's bookstore. This book is a companion piece to the Spirituality and End-of-Life Care educational program.

Private Conversations and Public Discourse

A new report, Private Conversations and Public Discourse: The Importance of Consumer Engagement in End-of-Life Care has been published by the National Hospice and Palliative Care Organization’s Caring Connections. The report provides a framework for consumer engagement in end-of-life issues and details eight specific areas that should be addressed in a national discussion, including:

1. Individuals need to talk about and document their wishes for care at the end of life.
2. Health care providers need to initiate honest, timely and culturally-relevant discussions with those for whom they are caring.
3. Policy makers need to eliminate barriers that prevent timely access to hospice and palliative care.
4. Employers need to support staff who are living with a serious illness or are caregivers or grieving.
5. The media needs to explore ways to demystify dying and help normalize the experience for the general public.
   

The report discusses the cases of Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo and cites past efforts to advance care at the end of life. It also addresses what barriers people find when seeking quality care at the end of life.

Building a Successful Hospice Volunteer Program

The Hospice Foundation of America has developed “Hospice Volunteers: Recruiting, Retaining, Rewarding,” a free online webinar that examines the important role that volunteers play in hospice, and explores creative ways that hospices can recruit and retain volunteers.

Volunteers have always been an essential component of hospice care. As Lisa McGahey Veglahn, Program Officer at HFA, points out, “The hospice movement in the U.S. was started by volunteers-- people who wanted to help bring comfort, dignity and support to the patients and families who were affected by life- limiting illness.” More than 460 thousand hospice volunteers now deliver more than 20 million hours of service annually to patients and their families.

HFA’s new free online webinar was developed by Robin Fiorelli, LCSW, Senior Director of Bereavement and Volunteer Services for VITAS Healthcare Corporation. The program includes tips and ideas from professional hospice volunteer coordinators, as well as personal insights from hospice volunteers. The program, plus additional resources and Fact Sheets, can be used as for volunteer recruiting and training purposes at no charge. Free Continuing Education credits are available for a wide range of professionals.

This program is part of HFA's Hospice Information Center, an extensive online library that also includes programs such as Understanding Hospice, Family Caregiving, Understanding Grief, and End-of-Life Challenges facing the LGBT Community. The programming provides hospices and other community organizations the opportunity to educate staff and volunteers about the basics of hospice care, caregiving, and grief, and links are provided to guide viewers to more information on a variety of subjects. Other resources are available for consumers, to help family and friends learn about hospice and how it can help people cope with some of life’s most challenging situations, in a format that is accessible and understandable. Resources are also available in Spanish and Chinese.

It's Not Too Late to Register for Spirituality and End-of-Life Care

There's so much to do this time of year - like get your taxes ready, fertilize the yard, clean the house. But be sure to watch this sneak peak of HFA's 2011 educational program!

Don't miss HFA's 18th Annual Living with Grief^® educational program, Spirituality and End-of-Life Care. The 2½ hour program can be shown according to your schedule beginning on April 13, 2011. Learn more about the program and register here.

(To receive materials via mail before April 13, register before April 1st!)

Cost Benefits of Palliative Care Consultations

Health Affairs released a study of 485 Medicaid beneficiaries from four urban New York hospitals showing that the use of palliative care teams to coordinate care reduced inpatient costs by $6,900 for an average patient. The savings were greater for patients who died in the hospital and less for those who were discharged. The study concluded that the savings in New York state could range from $84 million to $252 million if hospitals with 150 or more beds used palliative care teams, depending on the number of Medicaid patients.

Read coverage on the GeriPal blog and the Wall Street Journal Health Blog.

Another article from MedConnect - Medical News that addresses the cost-saving potential of palliative care consultations, describes a mandatory palliative care screening pilot program at St. John Hospital and Medical Center in Detroit. The screening pilot was conducted with collaboration from the Duke Institute on Care at the End of Life. After a year of implementation, the program saved the hospital $700,000 and is now being used in the system’s five hospitals.

New Poll Indicates Desire for Enhancing Quality of Life at the End of Life

Hospice Foundation of America’s Outreach and Development Officer, Catherine Campbell, attended the National Journal Live Policy Summit: Living Well at the End of Life, A National Conversation on Tuesday, March 8^th in Washington, D.C. The event was moderated by Ronald Brownstein, Editorial Director of the National Journal, and underwritten by the Regence Foundation. Brent McGoldrick, Sr. VP and General Manager of DC based Financial Dynamics, presented the poll to an audience of about 100 policymakers and interest groups. Following the presentation, the survey findings were discussed in a roundtable discussion of experts including representatives from the Cato Institute, Compassion and Choices, the American Society for Clinical Oncology, and AARP. Representative Earl Blumenauer (D-OR), also participated in the discussion.

Together, the National Journal and The Regence Foundation polled 1000 Americans on their views of end-of-life care. The Key Findings reported were:

1. Americans feel strongly that enhancing quality of life is more important than extending it, but they are divided on how much the health care system should spend to extend the life of a seriously ill patient.
   • By a wide margin, Americans believe it is more important to enhance the quality of life for seriously ill patients, even if it means a shorter life (71%) than to extend the life of seriously ill patients through every medical intervention possible (23%).
   • This result is consistent across all party affiliations – Democrats (71%/24%), Republicans (68%/27%), and Independents (72%/20%).
   • More than half of Americans (55%) believe that the health care system has the responsibility, technology and expertise to offer treatments and spend whatever it takes to extend lives. This is compared to 37% who believe the health care system spends far too much trying to extend the lives of seriously ill patients.
2. Americans believe palliative care should be a top priority in health care.
   • Americans are unfamiliar with the term palliative care (24% say they are "familiar"), especially compared to end-of-life care (65%) and hospice care (86%).
   • When educated on palliative and end-of-life care, Americans are nearly unanimous in believing these treatments should be a top priority in health care (96% important).
   • Nearly two-in-three Americans (63%) have had personal or family experience with palliative care, end-of-life care, or hospice care. However, only half say they were prepared for that experience.
3. People, regardless of political affiliation, want palliative care included in public and private conversations about health care.
   • A strong majority of Americans believe there should be more of an open debate about public policies regarding palliative care options (78% agree).
   Respondents agree that educating patients and their families about these issues is important (97%), they think a public dialogue will provide more information about care options (86%), and they think discussions should be fully covered by both private health insurance and Medicare (86% and 81%).
   • Only 12% of Democrats, 26% of Republicans, and 22% of Independents agreed with the concern that an open debate about palliative care and end-of-life care could interfere with personal decisions between families and doctors.
   • A full 81% of Americans believe discussions about palliative care and end-of life treatment options should be covered by Medicare, including 86% of Democrats, 77% of Republicans, and 79% of Independents.
4. Despite a strong preference for quality of life at the end of life, many Americans worry about potential conflicts between palliative care and doing whatever it takes to extend a patient's life. This concern surfaces disproportionately among African-Americans.
   • Roughly half (47%) of respondents say they worry that emphasizing palliative and end-of-life care options could interfere with doing whatever it takes to help patients extend their lives as long as possible.
   • Once again, this concern is expressed consistently regardless of political affiliation, held by 45% of Democrats, 48% of Republicans, and 51% of Independents.
   • Significant differences show up here between college-educated (35%) and non-college-educated (57%) respondents, and between Whites (44%), Hispanics (39%), and African-Americans (71%).

View the topline results here.

Understanding the Spiritual Needs of the Dying

HFA Senior Consultant Kenneth J. Doka, PhD, MDiv, writes in the Religion section of the Huffington Post about spiritual needs at the end of life. Spiritual needs of the dying are often overlooked or ignored by family caregivers, clinicians and even clergy, who may be uncomfortable with with conversations that have strong spiritual significance.

Do individuals become more religious as they die? This question has often been debated among academics who study death. Such debate avoids the central issue that the dying process raises profound spiritual concerns of meaning and connection for individuals. Whether those who are dying reconnect, review, or renew prior religious beliefs -- or are even open to new religious experiences -- they are likely to engage in some form of spiritual searching.

That search may be deeply religious or not, but it is always spiritual, and it can occur whether the person was traditionally religious or followed another belief system, whether the person was a humanist, atheist, or agnostic. Despite this reality, spiritual needs of the dying are often overlooked or ignored by family caregivers, clinicians and even clergy, who may be uncomfortable with spiritual searching by the dying and with conversations that may occur that have strong spiritual significance.

This post is adapted from Living with Grief^®: Spirituality and End-of-Life Care, available from the Hospice Foundation of America's bookstore. This book is a companion piece to the Spirituality and End-of-Life Care educational program.

Getting Ready for HFA’s 2011 Education Program

No one actually shouted, “Lights, camera, action!” but production on HFA’s 18^th annual Living with Grief^® program, “Spirituality and End-of-Life Care,” has concluded (or, as they say, wrapped) and now DVD’s are being pressed and readied for mailing.

The program features interesting and informative discussion among our panel of experts, plus insightful and often quite moving interviews with hospice patients and their loved ones. There still is time for hospice and other organizations to register as viewing sites, and for people interested in the subject to locate a convenient viewing site.

The program will be shown around the U.S. and Canada beginning April 13. It is approved for continuing education by more than 70 boards. Learn more about the program, or become a viewing site here.

Spence Levine, Senior Program Officer

Time. . .to Help Others

“Time…to Help Others” is HFAs new video intended to inspire and motivate viewers to become hospice volunteers by sharing thoughts and experiences of current volunteers.

“When we’re with friends at social events and they ask about hospice and what I do – their reaction is strange and negative and they’re concerned about me being depressed and about it being depressing and upsetting and they just don’t know what hospice is,” Elaine Kurczewski, a patient care volunteer for Midwest Palliative & Hospice Care near Chicago, tells viewers.

“Hospice is probably one of the most rewarding experiences perhaps in my whole life because you know that you’re making a difference in that patient’s life,” says Daniel “Juno” Lee, a 17-year old high school senior and volunteer for Suncoast Hospice in Clearwater, Florida.

Gail Cherochak tells viewers her volunteer role for Hospice Caring in Gaithersburg, Maryland, taps into her professional expertise. “I work primarily on maintaining the website, getting out new information about events, I work with the marketing people who are designing brochures to make sure the information is consistent and that we’re getting out a really great message to the public and that we are presenting a really good image to our clients who might want to use our services.”

And Alex Silva, who manages volunteers for VITAS Innovative Hospice Care in San Diego, tells viewers, “I started out as a hospice volunteer because hospice took care of my grandfather and I saw the care and compassion that they offered and the great relief the volunteers offered to my family and I wanted to be a part of that.”

“Time…to Help Others” runs just over 16 minutes and is subtitled for the hearing impaired. It can be viewed online at www.hospicefoundation.org/infocenter or HFA's YouTube channel. It was produced with funding from a grant by the Centers for Medicare and Medicaid Services.