Do you have thoughts about professional practice you’d like to share with your colleagues? Send an e-mail info@PlainViews.org.

Advocacy

Rev. Dr. Martha R. Jacobs on a systematic look at quality in pastoral care

Professional Chaplains and Health Care Quality Improvement

As chaplains, many of us have, for years, been working to better understand and be integrated into institutional and departmental quality improvement projects. To assist in this endeavor, The Hastings Center has convened a one-year research project in partnership with The HealthCare Chaplaincy and Rush University Medical Center to explore how quality of care is understood within the “professionalizing”profession of chaplaincy; the challenges inherent in defining, measuring, and improving quality in less-standardized areas of health care delivery; and the current and potential role of chaplaincy in improving the quality of health care in the United States.

This project includes an interdisciplinary working group of staff, consultants, and outside experts, and an IRB-approved qualitative research study, consisting of focus groups with professional chaplains in the New York City, Chicago, San Francisco, and Phoenix areas.

By describing the ethics of quality in health care in terms of chaplaincy, the products of this project will:

- help chaplaincy directors create substantive, ethically sound quality improvement programs for their departments, and contribute to organizational QI efforts;

- help health care administrators better understand the profession of chaplaincy and the current and potential role of the chaplain in the delivery of quality care to patients and their families;

- help professional organizations within chaplaincy, and organizations whose standards and guidelines cover chaplaincy, address the challenge of applying existing measures of quality in health care to this profession.

These products will also contribute to the still-small body of empirical research on chaplains and chaplaincy, and will identify opportunities for further research and education.

Planned products include:
•A peer-reviewed article analyzing current quality standards relevant to chaplaincy
•A peer-reviewed article on the project’s empirical findings
•A final report, with ethical analysis and recommendations

Audiences for this project include:
•Senior health care administrators
•Chaplaincy directors, staff chaplains, and professional organizations in chaplaincy
•Health policy scholars, professionals, and organizations

A website has been established to enable all interested in this project to follow the progress. Go to http://www.thehastingscenter.org/research/professional-chaplains-quality-improvement-health-care.asp to stay up-to-date on where we are with this research project.

Periodic updates will also appear in PlainViews.

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Rev. Dr. Martha R. Jacobs is Managing Editor of PlainViews.

Do you have thoughts about advocacy you’d like to share with your colleagues? Send an e-mail to info@PlainViews.org.

 

Education & Research

Chaplain Sharon A. Frank on releasing one back to God

A Neonatal Service of Love and Remembrance

I had the privilege of sharing this service with a family who had a child in our New Born Intensive Care unit for five months. Eventually, the parents, with the support of the staff, had to make the decision to “release him back to God.”(These were the parent's words.) I was asked by the family to put a service together for a tree planting and release of the ashes. I checked resources and couldn't find much that fit the situation. A couple chaplain colleagues here at Dartmouth Hitchcock Medical Center helped me out. I searched through my memorial file and found a few poems and then went to my ol' standby –The Psalms –for praying.

When I finished the service I was amazed at how well everything came together. I felt guided by a spirit as I was typing. I have used some of the readings in other services for children. This family had chosen to play soft music in the background –like they did for their child in NICU. Others might choose to insert music into the service. It is my hope that this can be a resource for others.

A Service of Love and Remembrance
Celebrating the Gift of
(name of the child)
(Date of the service)

“Into the freedom of the wind and sunshine, into the dance of the stars, into the hands of the star-maker, into the promise of Easter, we let you go.”

Invocation
We gather together in this sacred space to recognize the sacredness of life. We come together to remember, if we could ever forget, (child’s name). We remember the gift of his/her life and what he/she gave to his/her family and those who cared for him/her. May this time help to bring solace to those who still hold him/her close to their hearts. May this time hold our grief and be a quilt of comfort.

The Readings:

Some People by F. Weedn

Some people come into our lives and leave footprints on our hearts and we are never ever the same. Some people come into our lives and quickly go. Some stay for a while and embrace our silent dreams. They help us become aware of the delicate winds of hope and we discover within every human spirit there are wings yearning to fly. They help our hearts to see that the only stairway to the stars is woven with dreams and we find ourselves unafraid to reach high. They celebrate the true essence of who we are and have faith in all that we may become. Some people awaken us to new and deeper realizations for we gain insight from the passing whisper of their wisdom. Throughout our lives we are sent precious souls, meant to share our journey however brief or lasting, their stay reminds us why we are here; to learn, to teach, to nurture and to love. Some people come into our lives and they move our souls to sing and make our spirits dance. They help us to see that everything on earth is part of the incredibility of life and that it is always there for us to take of its joy.

So (child’s name) came into our lives and left footprints on our hearts and we will never ever be the same.

Time by J. Gray

Time is the precious gift of ourselves that we bestow on one another.
It is the prayer we offer together; the laughter we share; the sorrow we endure.
It is tears and quiet listening. A gentle touch, a quiet word.
Time is forever, the care we give to each other. It gives us precious glimpses of God’s love.
Time is at last God’s promise, which then becomes our Hope.
Everything is made beautiful –in God’s time.

Love Lives On by Mary Ramish

Love is also a common theme to those whom I love and those who love me.
When I am gone, release me, let me go.
I have so many things to see and do.
You must not tie yourself to me with tears.
Be happy that I was here. I gave you my love, you can only guess how much you gave me in happiness.
I thank you for the love each one of you has shown. But now it is time I traveled on.

So grieve a while for me, if grieve you must. Then let your grief be comforted by trust. It is only for a while that we must part.
So bless the memories in your heart.

I will not be far away, for life goes on.
So if you need me, call and I will come. Though you cannot see or touch me.
I will be near and if you listen with your heart, you will hear all of my love around you soft and clear.
Then, when you must, come this way and I will greet you with a smile and “welcome you to my heavenly home.”

Memories of the Child Shared by All

Sometimes by M. Updyke

Sometimes, memories are like rain showers, sprinkling down upon you, catching you unaware and then they are gone, leaving you warm and refreshed.

Sometimes, memories are like thunderstorms, beating down upon you, relentless in their downpour, and then they will cease, leaving you tired and bruised.

Sometimes, memories are like shadows sneaking up behind you, following you around. Then they disappear leaving you sad and confused.

Sometimes, memories are like quilts, surrounding you with warmth, luxuriously abundant and sometimes they stay, wrapping you in contentment.

Tree Planting & Joining of Spirits

We are gathered today for two purposes: to remember and to plant. In remembering: we hold again in our minds’eye and ears the sweet child who left our arms, but who never left our hearts. We see again his/her face, his/her hands and feet. We remember the tenderness, the determination, the challenges and the special times. We remember flesh against flesh, the grasp of small fingers.

As we look back in memory, also we look ahead in planting. The young tree planted here is a symbol of a future that we believe in, even though we cannot see it, and things didn’t turn out as we had planned. We plant not in spite of our sorrow, but because of it. Not hindered by tears, but encouraged by them. The love of this child was planted in our hearts and now this tree symbolizes that love. Over the years, this tree will grow and it will stand as a symbol of his/her life. The life cycle of this tree will remind us of those times in the human life cycle of welcoming and saying good-bye.

Reading of Psalm 125

Those who put their trust in You are like giant trees standing firm and rooted deep. As the trees grow strong in fertile soil, so we mature in the garden of Love, nourished by the Word of Life. For the weeds of fear, the tares of ignorance, find no home here; they are soon cast out. As each flower in its uniqueness blessed the garden, the interconnectedness of all brings it to fulfillment. Those whose lives reflect goodness and integrity, become mirrors to Love’s way. They are like fragrant blossoms that bring joy to all around them, like open invitations for others to come. Enter the garden of love.

Closing Prayer

Loving and comforting God, bless our gathering this day. Bless this tree and our planting of it as a constant memorial to (child’s name). May its roots prosper and give strength, may its green leaves bring coolness in the heat of summer, and its red leaves, warmth of soul in autumn. And may its bare branches in winter remind us that what sleeps, will awaken, what dies, will be transformed and what has passed, will be reborn. May the birds that dwell in this tree’s branches sing forth the songs we have learned with them: that we shall never be the same. AMEN

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Chaplain Sharon A. Frank has been a Chaplain/ACPE Supervisor at Dartmouth Hitchcock Medical Center in Lebanon, NH, for 12 years. She was ordained an elder in the United Methodist Church in 1981 and is a member of the Northern Illinois Conference. She did her SIT training at Lutheran General Hospital in Park Ridge, Illinois, graduated from Hood College in 1977 and Garrett Evangelical Theological Seminary in 1980. She is a Board Certified Chaplain and a member of the System Centered Training Institute.

Do you have thoughts about education & research you’d like to share with your colleagues? Send an e-mail to info@PlainViews.org.

 

Spiritual Development

Chaplain Joan Keiser on attempting to make sense

The Incomplete Life –Or Was It?

A 22 year-old died today as the result of a motor vehicle accident. She lost control of her vehicle, crossed the center line and was hit head-on. She suffered a traumatic brain injury which resulted in brain death.

She had been married five years and was a hard worker at a warehouse. God had gifted her with the ability to play the guitar, the mandolin and the piano. She sang with her family at church and other community gatherings about God’s grace and love. Her husband told me, “She brought joy to all those she knew . . . she got along well with everyone.”

She had been working two hours extra every day the week prior to her accident. She was, no doubt, tired and may have fallen asleep at the wheel as she was driving home. She chose not to wear a seat belt.

We are a society that is living longer nowadays and so when someone 22 years old dies, we feel that is just “too young”or that it is “an incomplete life.”

Some say it is God’s plan while others feel the choices we make cause life to end too soon. What if she had chosen to wear her seat belt? What if she had not worked those extra hours? What if . . . we continue to attempt to make sense out of what happened.

Scripture asks: “What is your life? You are a mist that appears for a little while and then vanishes . . . you ought to say, 'If it is the Lord’s will, we will live and do this or that.'”(James 4:14b, 15)

In the book Five Things We Cannot Change, author David Richo talks about things in life over which we have no control and lists five “unavoidable givens.”One of those five givens is: Things do not always go according to plan.

It seemed to her family and, perhaps, to all who were aware of her death that the 22-year-old girl had an incomplete life. Was it? Or, was it a life made complete with death to life as we know it?

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Chaplain Joan Keiser has been a chaplain at St. John's Hospital, Springfield, MO, for the past 10 years. She completed her four units of CPE at St. John's Hospital. Joan has a certificate of Religious Studies from Loyola Institute for Ministry, Loyola University, New Orleans. She is a licensed local pastor serving at Rogersville United Methodist Church. Her areas of hospital ministry are: Neuro-Trauma ICU, Neuro-Intermediate/Stroke Center, Breast Center, and Endoscopy. Joan also serves on the Springfield Stroke Coalition and is a member of the Mid-America Transplant Collaborative for Organ Donation, representing St. John's Hospital. She is currently applying for Board certification. She is married, has two children and six grandchildren.

 

Do you have thoughts about spiritual development you’d like to share with your colleagues? Send an e-mail of any length to info@PlainViews.org.

 

BioethicsWalk

BioethicsWalk addresses bioethical issues that chaplains face in their day-to-day work. PlainViews invites our readers to share their responses to each BioethicsWalk column, which will be published in the following issue. We also invite our readers to submit areas of concern/interest about which they would like Nancy to write.

If you’d like to respond to BioehicsWalk, please send a comment of no more than 100 words. You can use the e-form below (click on "hearing from you," link) or submit your commentary to the editors in the body of an e-mail (or as a Microsoft Word attachment) sent to Info@PlainViews.org. Please put the phrase “BioethicsWalk” in your subject line. Comments that are too late for the previous issue can be viewed in TalkBack.

We look forward to hearing from you.

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Can anyone hear your prophetic voice?: the ethics of speaking up

You can learn a lot about what’s going on in health care in a state by talking with chaplains at their state meetings. In states with ageing populations, we talk about chaplaincy in long-term care, nursing homes, assisted living. In states with younger populations, we talk about chaplaincy in ob-gyn and pediatrics. In states with changing demographics, we talk about the challenges of providing chaplaincy services to newer community residents, who may bring different religious, cultural, and economic factors into the mix, and of balancing their needs with the needs of longtime residents.

During one such discussion, a chaplain, sitting in the back of the room, mentioned the “prophetic voice”he and his colleagues brought to their work. I was curious: How was this chaplain using his prophetic voice as a health care professional? I needed examples. “Well . . . . I’m on the ethics committee.”With that, everyone in the room turned around in their seats. “We’re all on the ethics committee –that’s just filling a seat at a table!”They had a point.

The “prophetic voice,”in seminary shorthand, is that voice that calls attention to social injustice and holds society accountable for its care or neglect of its most vulnerable members: the widow, the orphan, the stranger at the gate. Acute-care hospitals are perhaps the one institution in American society recognizably organized in these terms: in principle at least, the stranger at the gate (or in the ambulance) will be taken in and cared for. We know that this is not always how it works. We know about the 46 million uninsured. We know that our health care system is not organized in ways Isaiah would approve of. And we know what we are called to do when we call ourselves health care professionals: to align ourselves with the best interests of those who suffer, and to work to improve the quality of their health care.

Simply being a health care professional, or a member of a particular profession, is not a guarantee that we will do this every day. It is easy to substitute “I’m on the ethics committee”for “In practice, I speak up for patients’best interests, and whenever I learn that care is organized in ways that do not serve patients’interests.”And there are chaplains who will say, isn’t justice-seeking the patient rep’s job? Isn’t my job to “be with”the patient and family, to help relieve their suffering through my presence and my skills?

Shirley Otis-Green is social worker and palliative care specialist at City of Hope National Medical Center near Los Angeles. Her mission is to encourage the “being with”professions in health care –chaplains, social workers, psychologists –to find their prophetic voices, to speak up for patients. Otis-Green runs a training project called Advancing Clinical Excellence (ACE), which is funded by the National Cancer Institute. According to the project’s website, participants will be trained “to become more effective role models and advocates for enhanced palliative, end-of-life and bereavement care within their institutions and disciplines.”These advocates are not meant to be lone voices crying in the managed-care wilderness. ACE is committed to transprofessional education, to teaching participants how to work as interdisciplinary palliative care teams and to collaborate as advocates for better care.

In this vision of advocacy, “being with”entails the ethical obligation, “being for.”Speaking up is part of the job, and will be until all patients have access to high quality palliative care when they need it. The ACE Project’s vision challenges chaplains working in all areas of health care to think about the ethics of speaking up –and of keeping silent.

 

For more information about the ACE Project, visit: www.cityofhope.org/ACEproject

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Nancy Berlinger is Deputy Director and Research Associate at The Hastings Center. Her research interests focus on clinical ethics and include end of life care; ethics in health care chaplaincy; conscientious objection and moral distress in health care; and patient safety and the resolution of medical harm. Her broader interests include bioethics issues in cancer care, narrative ethics, and medical humanities. As Deputy Director, she manages the Center’s organizational capacity-building initiative, Bioethics and the Public Interest, which has received major support from the Ford Foundation. Berlinger is the author of After Harm: Medical Error and the Ethics of Forgiveness (Johns Hopkins, 2005), which will be released in paperback in fall 2007. She serves on the ethics research group of the Joint Commission, the ethics faculty of the American Society of Healthcare Risk Managers (ASHRM), the bioethics committees at Montefiore Medical Center, Bronx, New York and at Richmond of New York, and the editorial board of Medical Ethics Advisor. She is a frequent presenter at grand rounds and other ethics education programs for health care professionals. She volunteers on the Chaplaincy Service at Memorial Sloan-Kettering Cancer Center in New York City.

She is a graduate of Smith College and holds the Ph.D. in English Literature from the University of Glasgow and the M.Div. in Christian Ethics from Union Theological Seminary.

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LongView

Jane E. Babin, J.D., on being changed by disease

Living and Dying With Hope

I am the face of disease. I am the voice of disease. I am one of millions of faces and voices that need to be heard, that wants to be known. I am one of many, and yet, like others, I am unique. My story is different from theirs and yet the same. Listen to my story and see the faces, hear the voices of the many, and remember……….

My journey began in August of 2003. It had been a wonderful summer. I was off on summer break from my job as a university professor. I was enjoying time with my then 6-year-old son at our neighborhood beach on a lake in central New Hampshire. Oftentimes, my friend Dan and I would go down to the beach and sit on a large rock that protrudes out into the lake. Dan was blessed with a fantastic rhythm and blues voice and writes his own songs, to which I would add harmony. We would perform his new material to kayakers and canoeists who would stop and listen, applaud and give feedback. After 4 years of divorce, although still unattached, I was finally starting to have fun again, to enjoy life once more. Then, a simple fall when dismounting my bicycle –a very simple fall –changed the course of my life. At first just one fall, but then I experienced a second and third one. Dan, would laugh and remark on what a “klutz”I was becoming. I would laugh, too, acknowledging my lack of coordination.

It wasn’t until I was walking the short distance home from the beach a few weeks later that I realized something was wrong. I had to keep stopping. My left foot was not able to flex properly. It was now September; I was on sabbatical leave from the university and teaching an on-line graduate course from home. I called my sister, a nurse practitioner, who advised me to call my physician immediately. My sister was soon to become my greatest ally in my quest to get answers.

Although I did not know it at the time, those simple falls, the difficult walk home were to be the beginning of the end of my life. Over the course of the next few months, I went from one doctor to another, attempting to find a name for what was happening to me. In January of 2004, I was referred to a well-know clinic outside of Boston, to a neurologist who ordered a painful test consisting of sticking long needles deep into my muscles and sending an electrical pulse to measure the ability of my nerves to communicate with those muscles. Unfortunately, they were not speaking to each other.

I remember two important things about that visit to this clinic:

1. The neurologist recently had knee surgery, was in discomfort, and left to go home before my appointment was finished. He left the testing to technicians and to a physician who came in near the completion of the tests. I remember lying on the examination table, frightened, in pain, tears running down my face. The substitute doctor compassionately rubbed my arm, trying to comfort me. After the tests, she very calmly told me that she could not say definitively, but that it might be amyotrophic lateral sclerosis, ALS, Lou Gehrig’s disease. I drove home to New Hampshire with my sister, in shock, in silence.

2. The physician who went home with the aching knee called me the next morning to tell me, over the phone, that I, in fact, had ALS, and he gave me 3-5 years to live. I was alone to take this call. I remember thinking then that no one should ever have to hear the news that they are dying over the telephone.

Needless to say, I did not return to that clinic, but chose Massachusetts General Hospital’s neurology department for a second opinion. As luck, or fate, would have it, my niece, after graduating from Dartmouth College and before she left for Africa with the Peace Corps, worked as a research assistant at Mass General for a Dr. Cudkowicz, an ALS researcher and clinician. When my niece learned of my diagnosis, she spoke with Dr. Cudkowicz, who agreed to see me.

I steeled myself emotionally for another physician without personality, without feelings, without compassion. I was wrong. Although Dr. Cudkowicz confirmed the diagnosis of ALS, she prefaced it by saying three simple words, “I am sorry,”and I believe she was. I believe she is sorry every time she has to tell a patient that he or she has a terminal illness. I could see the compassion in her eyes; I could hear the concern in her voice. And it was comforting. I was soon to discover that this, unlike my other experience, was the norm.

Before I became a victim of this dreadful disease, I knew nothing about it. I was vaguely familiar with the Lou Gehrig story, but I knew no one with the disease. I did not know that it slowly paralyzes its victims. I did not know that it is a rare disease or that it strikes men more frequently than women. I did not know that it is a motor neuron disease, that it is fatal. Once diagnosed my ignorance put me on an accelerated learning curve, a roller coaster ride from which there was no escape. I would learn about ALS because I had no choice –it was about to redefine me, the person I was; the person I was about to become.

All traumatic events change people. I was now different. I had changed. I was now a person who could not look forward to a future. I was now a single mom who would not live to see her son graduate from college, advance in his career or get married. I was now a mother who would never hold her grandchildren, tuck them in or read them a bedtime story. I would never dance again, or run, or swim. I have forgotten now how it feels to walk normally. I have forgotten what it is like to be able to snap my fingers. I am changed, but not all for the worse.

I have often heard from, and read about, people suffering from serious illness who have made statements such as, “God blessed me with cancer,”or, “I am a better person, a happier more fulfilled person because of this disease.”It was shocking to me how someone could feel “blessed”by a disease, or conclude somehow that a disease had made them a better, happier person. That was before I became ill. I now understand. I feel that I have not known true compassion, have not experienced pure emotion prior to having been stricken with ALS. To say that I have met the most incredible people since my diagnosis would be an understatement. To say that I have witnessed the most profound changes in my friends, my family would be to underestimate them. Disease changes us all.

British physicist Stephen Hawking once said that he was “happier now”than before he became ill. Diagnosed with ALS in the mid-1960s, Hawking once told an interviewer, “Before, I was very bored with life. I drank a fair bit, I guess; I didn't do any work.... When one's expectations are reduced to zero, one really appreciates everything that one does have." A long-time victim of ALS, he miraculously lives, but he is changed. He is unable to move most of his body, yet he is happier. He expects nothing, yet appreciates everything.

We are changed by disease, we are all changed, not just the victims but those around them as well. People with terminal illness often fear abandonment. Will my friends, family still be there for me as the disease takes its course, as I become more debilitated? I can tell you from my experience that yes, family and friends have changed. My oldest sister and I have grown closer because of my illness. She often comes over to do laundry or to buy groceries for me. My brother in California, whom I have seen maybe ten times since I was sixteen years old, came back east with his family this summer to spend a week on the lake with my son and me. I travel to Santa Barbara next month to spend one last time with him, to say goodbye.

My relationships with my friends have grown deeper and truer. My friends have witnessed the physical changes in me. Yet, they know I’m still the same quirky person with the weird sense of humor. They don’t leave me behind or take no for an answer. I remember one evening standing outside of a local jazz spot in our town, not wanting to go in for fear I could not negotiate my way around the crowd in the restaurant. With this disease, I have no sense of balance and can fall easily. My friend, Jaylene came outside, took my arm and said, “You’re coming with me,”then proceeded to help me through the crowd to our table. My dear friend, Phil, will often pick me up, bring me to his house for dinner, and then drive me home. And we live on the same block! My friends allow me to express my fears and also my humor regarding this disease. And ALS can provide some very humorous moments! My friends are real in spite of this disease. They accept me with all my challenges. And, they will be there for me as this disease progresses. My friends are all into the arts –Bob plays pipe organ, his wife, Jaylene is a beautiful soprano. Steve is a poet and is in theatre, his friend Ginny plays flute and sings. Phil plays piano, keyboard and oboe. I often joke with them that my funeral will be more like a Broadway revue than a funeral. And I’ve no doubt that it will be.

My relationship with my healthcare providers has also evolved. Besides Dr. Cukowicz at Mass General, I also have a primary care provider, a local neurologist, a counselor, a spiritual director and others who monitor me on a regular basis. I never knew there were so many people involved in the process of a person dying! I am fortunate. They have all acted with kindness and compassion over and above my expectations.

My counselor has been my biggest supporter in my times of crisis and despair. He has helped me to realize that the stages of dying - denial, sorrow, anger, and acceptance are not mutually exclusive. I don’t go through these stages; they go through me, time and time again. He has unfailingly been there for me. He has suffered with me through the moments of anger, cried with me through the moments of pain and despair, and laughed with me through moments of absurdity. He has taught me, through example, that I am not alone with this disease. There are those who care.

They have all given me reason to hope, not for a cure, but for an opportunity to contribute, for quality of life. And hope is central to my ability to deal with dying. To quote Martin Luther King, Jr.:

If you lose hope, somehow you lose the vitality that keeps life moving, you lose that courage to be, that quality that helps you go on in spite of it all.

And so today I still have a dream.

As my night grows darker, my hope grows brighter –I still have dreams, I still have hopes. I hope for the opportunity to love and feel love from those closest to me; I hope for moments of brilliance and creativity, to be able to meaningfully contribute to this world; I hope that I will have quiet moments with my son, to help him through the changes that mommy will experience and to help him realize that I am still the same mommy inside, even though the outside is changing. And, finally, I have hope that when my mission here on Earth is completed, that I make a peaceful transition to a place of comfort and love.

Yes, I am the face, the voice of disease. I am an advocate for those without voice. I cannot explain why I got ill, why I am dying, for it defies explanation. But I can find purpose in what remains of my life. I can make contributions that I hope will bring fulfillment and joy to me and to others. And, I can make sense of how I leave this earth, how I relate to others and how they relate to me in this important process of dying.

Lastly, I can remind the medical community that those with disease have faces, voices, families, hopes, joys, fears and a need to be treated with compassion and respect. I am not just a body with disease. I am a spirit about to fly.

 

This article is taken from a lecture given at Williams College in January of 2005.

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Jane E. Babin, J.D., was a law professor at Plymouth State University in Plymouth, NH, until she had to retire because of her ALS. Part of her creative response to this vicious disease was to write, and to share, which has given her meaning and a reason to see this process through. Jane lives in Laconia, NH.

 

Do you have thoughts about long view you’d like to share with your colleagues? Send an e-mail of any length to info@PlainViews.org.

 

CaseConference

We post an ethical or situational concern that has arisen in a facility where one of our readers works. It has no identifiers included. It gives you only the facts of the case. Then, you can respond to that concern. This is an ongoing dialogue, with comments added as they come in. In the following issue, assuming it has been resolved, we give you the outcome from the facility where the incident took place.

We are always looking for cases. Please send any cases that you would like considered for inclusion to: info@plainviews.org We will ensure that it is stripped of any identifiers. For further guidance about how to write up a CaseConference, please refer to the CaseConference Archives, Vol. 4, No. 3 "How to Submit a Case for CaseConference." (Click HERE)

We hope that this will help to inform not only those who are dealing with the issue, but will enable all of our readers to learn from the experiences and perhaps mistakes of others.

PLEASE NOTE: Due to unanticipated continuing responses to both the case and the resolution of the case, added responses can be viewed in the archives. Click HERE.

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Case #21 (see responses below)

Ed was a 49-year-old resident who was a quadriplegic and had resided in a skilled nursing facility for several years. During that time, the resident used a specially equipped, motorized wheelchair that allowed him to travel around the building and go outside to smoke. As a result, many staff throughout the building had become friends with him. Ed developed several health complications leading to multiple hospitalizations over the past year. Since his most recent hospitalization Ed had not recovered to his previous level of functioning and had to stay in bed with oxygen support. Ed had no cognitive impairment and had full decision-making capacity.

The nurse practitioner working with Ed talked to him about his situation and explained the healthcare choices available, including palliative care. After a good deal of time in conversation with his doctor, the nurse practitioner and his family, Ed came to the conclusion that more hospitalizations would not improve his quality of life. Ed chose palliative care and no more hospitalizations.

Ed’s condition continued to decline and at times he became anxious and wanted someone to stay with him constantly. Ed had some family support but no one close enough to stay around the clock. Nursing and environmental services staff voiced their concern and made a pastoral care referral. The chaplain visited at least twice and offered spiritual support. The resident, who was Roman Catholic, was appreciative of chaplain visits but also indicated that his spiritual needs were being met through regular visits from priests and lay visitors from the local Catholic parish. The chaplain arranged for regular (twice weekly) visits from “Care Team,”volunteers who are available to visit end-of-life care residents.

During the last day of Ed’s life, his son stayed with him constantly. After the resident died, the nurse practitioner learned that a group of nurses who disagreed with Ed ’s decision not to be hospitalized had gone into his room the night before he died and tried to persuade him to go to the hospital. She came to the chaplain with her concerns about the ethical and spiritual boundaries that were crossed in this situation.

 

What ethical issues are in conflict in this case?

What emotional/spiritual issues are present in the persons involved in this case and how could they be addressed?

What education/training needs to be provided to help staff understand their role and maintain appropriate boundaries in caring for persons who choose palliative care over hospitalization?

What are some care giving dynamics unique to residential, long-term care settings that might help one understand and respond to this situation?

 

Responses

This is a very brief outline of a story that might have produced more clarity with more detail. The story appears to be a clear example of failure to respect patient autonomy and self determination. The key people who needed to be involved were involved in the making of this decision about his plan of care. There are no legal or social mores violations here in the greater society. I wonder if there was not a perception of there being a violation or at least a conflict in a smaller segment of Ed's social or religious system.

This story matches many others told about last minute stands taken by persons seeking to act out of their own personal moral and religious convictions to "prevent wrongful death at all cost." You mentioned that the patient was Roman Catholic. We know that his church struggles with issues related to withdrawal and withholding of life sustaining care as evidenced by Pope John Paul's comment about Teri Schiavo and the position he held about the quality of his own physically compromised life.

My sense is that this last minute stand was disturbing on some level to the perception of peace and harmony as this poor man came to the end of his life (which is a major goal of palliative care.) It might well have been destructive. The skilled nursing facility needs to have clear policy that prohibits such action from staff, and I would recommend disciplinary action for those who participated in this if that policy exists. This story does not suggest to me that the breech of patient/staff boundaries can be attributed to familiarity with the patient because of their long term care of him. Each could have spoken to him about their concerns in the course of their day's work. This "group of nurses who come in the night to persuade" sounds more issues oriented than familial concern for the patient. This, along with other forms of staff impositions (including proselytization) is not to be tolerated. Chaplains have a role to model respect for patient values, and they have a role by upholding corporate policy and the quality assurance efforts of their human resources department.

Stan Dunk, M.Div., BCC
Director of Pastoral Care
The Fort Hamilton Hospital
630 Eaton Avenue
Hamilton, OH 45013

 

 

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Reviews

Sarah Masters reviews the audio series

Understanding Islam: A Listener’s Guide

This is an opportunity for chaplains to revisit the story of Islam through the eyes of the renowned authority on comparative religions, Huston Smith. Dr. Smith provides his listeners with wonderful insights into the most “persistently misunderstood religion in the world.”He follows unique themes such as how, as a new faith tradition, Islam received much of its inspiration from Greek philosophy.

Understanding Islam: A Listener’s Guide is a condensed version of Huston Smith’s Religions of the World audio series that included an in-depth examination of Islam. This CD comes with an updated introduction about this wisdom tradition.

Dr. Smith’s animated description of the rights of women as put forth in the Qur'an, and his thoughtful examination of the Qur'an’s passages on both mercy and violence, are two highlights that will resonate with the listener.