Respect Life Month
In search of a good death
Local groups work together to address end of life issues and care
By Linda DeVries
'Renewing for the 21st Century:
The Trinity & World Community'
What do we mean by palliative care?
Last Acts is a national membership organization to raise awareness of the need to improve care of the
The group explains palliative care as "taking care of the whole person - body, mind, spirit - heart and soul.
It looks at death and dying as something natural and personal."
Last Acts lists the following five principals for palliative (comfort) care.
" Palliative care respects the goals, likes and choices of the dying person.
" Palliative care looks after the medical, emotional, social and spiritual needs of the dying person.
" Palliative care supports the needs of the family members.
" Palliative care helps gain access to needed health care providers and appropriate care settings.
" Palliative care builds ways to provide excellent care at the end of life.
Last Acts' Honorary Chair is former First Lady Rosalynn Carter. Its member organizations represent health care professionals, religious bodies, advocates, parents, educators, health care institutions-everyone with a stake in improving the American way of death.
More information can be found at www.lastacts.org.
"I forgive you."
"I love you."
When the end of life is near, many people need opportunities to express words like these. Yet, because many of us fear death or even deny it, we avoid talking about it, and we avoid dealing with issues that add to suffering: pain management, financial worries, family strain, compassionate
care, and the knowledge that we are not alone.
The recent four-part PBS series "On Our Own Terms: Moyers on Dying" highlights why many of
us fear death or even deny it. But death's certainty remains. Everyone now living will eventually
How can we learn to approach the end of our lives with less fear? How might we help someone
we love face their own death? If death is primarily a spiritual issue, where can we go to explore
our faith and values in respect to the dying process?
Some answers are on the way.
Discussion groups and organizations that focus on end-of-life concerns are springing up
nationwide. Since April 1999, Wisconsin's Coalition to Improve Palliative Care has worked to
establish regional and local groups throughout the state. "Palliative care" refers to providing total
comfort care -- including physical, psychological, spiritual and social aspects -- for patients whose
diseases don't respond to curative treatments or who are just at the end of life. It focuses both on
quality of life and comfort for the dying.
In the past, families were integrally involved in the process of death. Modern medical advances
and significant changes in our society have moved the dying person from home to a hospital or a
nursing home. While dying used to be considered a normal part of life, now families face
complicated medical and ethical decisions, and our technological society has come to perceive
death as a failure.
"These issues aren't just something you see on TV or read about in a magazine," said Dr. Edward
Laarman, pastor of Covenant Church, Appleton. "They face patients and their families and their
health-care providers every day here in the Fox Valley. As a pastor and a member of the St.
Elizabeth Hospital's Ethics Committee, I have helped people struggle with these issues and
sought to bring God's peace and comfort in difficult situations."
The Fox Valley Coalition for End-of-Life Care was formed in April to help people with these issues,
as well as to improve the quality of life for people near death. Its an ecumenical, community-based
effort has brought together medical, religious, educational, legal, and business professionals to
give individuals, families, health care providers, the faith community, and the community at large
opportunities to discuss end-of-life planning.
"We want to help people talk about death with their families and physicians and face the decisions
they will have to make," said Appleton Medical Center's Chaplain Nolan Gnewuch, a Lutheran
minister who serves as coordinator of the Religious Systems Task Force for the coalition. "When
you're lying in a hospital bed with a tube down your throat is not the time to make those
The Fox Valley Coalition actively promoted the Moyers series, which examined Americans'
attitudes about death, finding most uninformed, ill-prepared, and squeamish about even
mentioning the word..
"There's been a flurry of interest because of the Moyers series," said Nolan "Our goal is to find
whatever ways we can to keep these issues alive, to provide opportunities for families to talk
about these difficult things.The libraries in our hospitals and our pastoral care department are
purchasing the videos to make available for churches to use. This is a way for different faith
communities to become resources for discussion within their own frameworks."
The Fox Valley Coalition hopes to develop a community-wide system to identify and honor a
person's end-of-life choices. The coalition will also try to identify barriers to and solutions for
providing the best end-of-life care, working on care protocols and resources for pain and symptom
management for persons who are dying.
"We plan to have a telephone number that anyone can call to sit down and talk with people who
are knowledgeable about death and dying," Rev. Nolan continued. "The Thompson Community
Center (a resource for senior citizens) in Appleton has done some of this, and we will probably
work with them in training others."
The Fox Valley Coalition promoted "Compassion Sabbath," which was set for the weekend of
Rev. Jane Weeden of the First Congregational Church in Appleton said, "The concept of
Compassion Sabbath came from the Midwest Bioethics Center. As a local coalition, we sent out about 1,000 pieces of information about Compassion Sabbath to area clergy. This was just the
first year, but we hope it will become an annual event.
(MBC is a non-profit organization, based in Kansas City, Mo., and dedicated to helping integrate
healthcare policy and clinical decision-making.)
Want to know more?
* The next meeting of the Fox Valley Coalition for End-of-Life Care will be held at 7 a.m. on Tues.,
October 3 at the Thompson Community Center, Appleton. The public is welcome to attend. For
more information, contact Lee M. Vogel, M.D., at (920) 738-8409.
* On Oct. 26, the Kaukauna Coalition for End-of-Life Concerns will hold a public forum at Haen
Community Center on the St. Paul Elder Services Campus to discuss Advance Directives.
Attorney John Peeters will present options for legal documents that support a patient's wishes for
end-of-life care. He will explain the difference between documents like the Living Will and the
Power of Attorney for Health Care and facilitate discussion among family members before such
decisions are needed. For more information, call (920)766-6020.
* St. Gabriel Parish, Neenah, will host a four-week group to view and discuss the PBS series, On
Our Own Terms, starting on Oct. 3 at 2 p.m.
* St. Patrick Parish, Menasha, will host a similar group for four weeks, starting at 10 a.m., Nov. 1.
Professionals will be available to faciliate both discussion groups. Call (920) 722-4914 or (920) 725-8381 for more information.
"I preached on it at my church," Weeden said. "Plus we had people in the narthex handing out
forms for funeral preference, Advance Directives, Powers of Attorney for Health Care, and Living
Wills. We also made discussion groups available after the service. Physicians, attorneys, and
clergy were available to answer questions. We also plan to buy Moyers' video series."
Dcn. Reinhart Wessing of St. Thomas More Catholic Church in Appleton is also a member of the
Fox Valley Coalition and says the group is just getting started.
"It's a much-needed ministry," said Dcn. Wessing, who is also a member of the diocesan Respect
Life Committee. "It's not a one-shot deal. The Moyers' show is over, but other programs will
continue, especially locally."
Another group dedicated to the same principals is Kaukauna's Coalition for End-of-Life Concerns.
Their organizational meeting was held Tuesday, Sept. 26, at St. Paul Elder Services. Lenore
Domers-Merrill, a chaplain at St. Paul Elder Services, Kaukauna, said Kaukauna coalition is an
offshoot of efforts by the Catholic Health Association of Wisconsin (CHA-W) to organize regional
groups and improving public understanding of end-of-life issues.
"This is part of our core values: respecting the individual and providing compassionate care,"
Domers-Merrill said. "Local and regional coalitions like ours will raise awareness through activities
to fulfill the CHA-W's three goals: (1) the parish or community track -- to heighten public awareness, (2) the organizational track -- to see what hospitals and nursing homes are doing to
improve the quality of the dying, and (3) the professional track -- to help doctors and other
healthcare providers give compassionate care."
The Kaukauna coalition was started by Sr. Pat Sevcik, Domers-Merrill and several volunteers. It is
currently training volunteers at St. Paul's, called to sit with dying residents so family members can
get a break. These Companions work together with the family and receive training as well as
instructions about the person's last wishes.
"The whole object of end-of-life care is to bring more love and compassion into the final time of a
person's earthly journey," Dcn. Wessing said. "Pain management is a big part of that. Helping
people to die comfortably is, to me, showing the love and compassion of Christ. No one should be
forced into an assisted-suicide decision by letting them be racked with pain.
"I get tears in my eyes
when I hear such stories. I get tears of joy in my eyes when I read about comfortable deaths with
family gathered around the bed, holding the dying person's hands, knowing they will not be apart
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