"Whether you are a hospice professional, relative, or volunteer, this book will be of value to you in servicing the patient or your loved one as they approach their transition."
-Raymond Moody, MD, author of Life After Life
Soul Service speaks to the medical professional, lay person, dying person and family member about treating the dying from a holistic perspective. It provides a detailed navigation to spiritual and complementary care, as well as examines the phenomenon of metaphysical experiences at death. This book offers ideas on how to honor your loved one's passing and assists with the process of how to choose the best hospice. Soul Service highlights the voices of medical professionals working from the highest level of service. It serves as a useful resource guide to the myriad organizations that are currently available to assist with the dying process.
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SOUL SERVICEA Hospice Guide to the Emotional and Spiritual Care for the Dying
By Robert Cowgill Christine Cowgill
BALBOA PRESSCopyright © 2013 Christine Cowgill, MS, CRC
All right reserved.
Chapter OneEvolution of End-of-Life Service
Dying is a life event. What would our lives and our culture look like if we regarded death as if were starting a new phase of life? It would be much like getting married, having a child, starting a new job, or moving to a new place. Think about the eagerness and excitement (and/or stress) that occurs with each of these movements throughout your life. What if we looked at death as merely another one of these experiences? It was apparent over and over in my research and interviews that death is not the end. It is merely the doorway through which we enter our next life experience.
Death comes to us all in one way or another. In the United States, the 2010 census counted the population at 308,745,538. Of that number, the Centers for Disease Control and Prevention expects the mortality rate to be 838 deaths per 100,000 population, or 2,587,287. The truth is every one of those counted in 2010 will die at some point, including you and me.
In our culture, death has a bad reputation, and we seem to approach it in two ways. The most common way is to simply ignore it, either thinking it is something that is not going to happen to us or that we will think about when the time comes, never knowing how or in what manner that time will come. The not so common choice is to admit it, confront it, accept it, think about it, make choices about who we are, and live our lives in the present so that when the time comes, we are able to minimize the suffering we may experience. Instead of "raging against the dying of the light," as Dylan Thomas encourages us, why not be prepared at the end of life to move "gently into that good night"? No matter what choice you make, it is not possible to avoid the experience. The choice of how you approach death is up to you, but the inevitability of death is beyond your control. Since we only have the opportunity to die once, we should choose to do it well.
Is death the enemy? Many doctors feel so. Trained to fight for life at almost any cost, it is possible for them to feel they have "lost" when a patient succumbs to a disease or condition and death has "won." Death is not considered a natural conclusion of one's life.
Do we deprive people of having a good death? If you can choose, what kind of death do you want? What would you like that experience to be like? So much attention in books, movies, and documentaries is now given to the end-of-life experience, it is possible to think about death in a new light and make choices that affect that experience.
In the sense that death is a reciprocal event, no one dies alone. It has the power to give and receive service at both ends of the spectrum. Those who die reap the benefit of those who care for them; those who care for them reap the benefit and honor of sharing this shattering and illuminating life event with those who experience it.
Think about those in our lives who will help us through that portal into our next existence. Let's take a look at the evolution of end-of-life care—how we look at death—where we have been and where we are today.
The Hospice Movement
The word "hospice" is common in our society. But sometimes there is confusion over what hospice is, as if it were a particular place where one goes to die. In reality, it is a type of care and a philosophy of care that is available almost everywhere a person lives. It focuses on comfort care, addressing the symptoms of those at the end of life. The hospice philosophy and care were designed to address not only the physical issues that one experiences at the end of life but recognizes many other things are going on as well, including physical, emotional, social, or spiritual symptoms. It can take place as an inpatient facility devoted to hospice care, in a nursing home, through visiting nurse programs in the patient's home, or at an assisted living center.
Today, we are familiar with people who go into hospice or receive hospice care. But it was not always so. In the nineteenth and early twentieth century, people died at home. Eventually a shift occurred and it became an accepted practice for people to die in a hospital setting. Occasionally they still died at home, but most were admitted into a hospital for a serious illness and then remained there until death.
In the past, hospice care was mostly associated with religious orders rather than with the secular medical profession. It has been evolving since the eleventh century, when the Knights Hospitaller of St. John of Jerusalem opened the first hospice in Rhodes. It was meant to provide a refuge for travelers and to care for the ill and dying on a pilgrimage to the Holy Land. When the religious orders were dispersed, hospice care also ended. In the 1600s, it was revived by the Daughters of Charity of Saint Vincent DePaul in France, and there was a hospice in Dublin, Ireland, started by the Religious Sisters of Charity in the late 1800s. At that time, there was an epidemic of tuberculosis and typhoid, and hospice provided for those afflicted with these diseases. Eventually, the Sisters of Charity expanded internationally.
In the late 1800s in the United States, Rose Hawthorne Lathrop, Nathanial Hawthorne's daughter, was a friend of Emma Lazarus's, whose poem, "The New Colossus" is engraved on the base of the Statue of Liberty. Both women came from wealthy families, and when Emma was dying of cancer, there was plenty of money to provide for her care. However, for the terminally ill poor, it was not uncommon to be banished to Blackwell's Island, a horrible place that included a prison. Rose and Emma shared a mutual seamstress who became ill with cancer and did not have money for care. Rose wanted to help her. So in the fall of 1896, she took a three-month nursing course at New York's Cancer Hospital, moved into a three-room, cold-water flat on New York City's impoverished Lower East Side, and began to nurse the poor with incurable cancer.
Eventually, Alice Huber joined her, and together the expanded, eventually buying property in Westchester and moving into a much bigger facility in New York City. They became cofounders of the Dominican Sisters of Hawthorne, and in 1939, Alice Huber opened a house in Atlanta, which still exists. They are known as the Servants of Relief for Incurable Cancer and provide nursing home services, but only take care of terminally ill cancer patients. Their care is free.
The modern hospice movement is attributed to Dame Cecily Saunders, who, beginning in the 1950s, emphasized focusing on the patient rather than the disease and introduced the notion of "total pain," which included psychological and spiritual as well as physical issues. She was able to share her philosophy through a series of tours of the United States. Eventually she opened St. Christopher's Hospice in London, which has been a model for other hospices and is known worldwide as a pioneering hospice. It continues to do high-quality work with the terminally ill.
Contemporary with Saunders was a Swiss psychiatrist named Elisabeth Kübler-Ross, who made a study of the social responses to terminal illness while living in Chicago with her American physician husband. In 1969, her best seller, On Death and Dying, was published and remains a classic today. It had a tremendous influence on how the medical profession began to treat the terminally ill. Almost everyone on the planet is now familiar with Kübler-Ross's five stages of dying—denial, anger, bargaining, depression, and acceptance.
These two women—Saunders and Kübler-Ross—were the pioneers of the modern hospice movement and had a profound impact on the hospice movement as we know it today.
The AIDS Epidemic
The hospice movement, as such, didn't become more commonly known in the United States until the 1990s. As an illustration, in the early 1970s, a friend's father died in the hospital three weeks after he was diagnosed with cancer. There was nowhere else to send him, and treatment at home was not an option. When her mother died many years later, she died at home, part of a new hospice program that provided nursing support and care. Her parents died much differently, her father unaware, not told, "because he couldn't handle it." Her mother knew every step of the way, knew what to expect and had support and the best pain relief medication at the time to support her through it. Her father died at 8 p.m. on a Saturday, while his wife was visiting him. Her mother died at 3 a.m., in her own bed, surrounded by family.
The AIDS epidemic had a tremendous amount to do with change in orientation to hospice. It created the need for a compassionate way to care for young people who comprised a large demographic of those who became infected with a horrible disease and needed precise and caring medical attention. Indeed, it is possible to think in terms of the service all those young men and women provided to the hospice movement. It was through their deaths that the minds and hearts of caregivers across the country were opened to creating caring spaces for them to die.
For example, Clyde Johnson was a CFO for a large hospital in the late 1980s, when he became aware of a considerable discharge problem for his hospital regarding AIDS patients. When the hospital could no longer keep them, where could they go? Their families had often disowned them, and their partners had died. In the beginning, people were even afraid to be in the same room or to even physically touch those afflicted with the disease.
His wife, Metta, is a nurse and relates that when she first started working with patients who were HIV positive, she was employed in the oncology department of a hospital. She would go into the waiting room and immediately know who was new or different. Instead of calling out a name, she would approach the person and ask if he was the new patient. Then she would introduce herself and escort him to the examining room. Sometimes she would touch his arm or shoulder. The patients often asked her if she realized what they had. She would tell them that she was well aware why they were there. Many times she got the response, "But you touched me!" She would simply say, "I think we know how it's contracted." This couple's experiences caused them to combine efforts and create an inpatient hospice where those with HIV could be cared for and treated.
Here in the West, we do not embrace death. We shun it. We do not want to think about it. We would prefer to ignore it, so we are totally unprepared when it happens to us or a loved one. However, it is something that we need to become more conscious of, not in a bad or fearful way—just in knowing our time here is limited. And since that is true, what does that mean to each one of us personally and emotionally? Am I living my passion? Am I doing what I'm supposed to be doing? Can I be more aware? Am I demonstrating love for those I profess to love? How can I be more spiritual in my day-to-day life?
The medical professionals, chaplains, social workers, and volunteers interviewed for this book felt universally that their work was a mission, their life purpose, and that they were lucky to do it. Their orientation was to be of highest service to those dying and to act from the heart space. But it is not only the medical and hospice professionals who serve their patients today. The dying have a very important purpose. By allowing those whose life mission it is to serve the dying, they are served and serve. As one interviewee said, "That's why I feel like, since the nineteen years that I have been with this company, I have grown spiritually, I feel like I'm serving a purpose in life. I feel like this is my mission in life to help serve people." The woman who made this heartfelt comment is not a chaplain; she is a certified nurse's aide, and she feels serving the physical needs of her patients allows her to grow spiritually. She sees it as her mission in life to do the work she does.
That is the ultimate evolution of end-of-life care—to love what you do, feel that you are lucky to be able to do it, and then feel like you make a difference to those you serve.
Chapter TwoThe Patient
The patient is the hub in the wheel of the death experience. When a person is in the process of dying, there are dynamics in every single family and with every single person in their community. It is important to be able to bind those dynamics together—children, coworkers, family, friends, neighbors, and pets. Everything needs some clarification on some level. The search for some kind of peace and resolution comes through those connections. It is not uncommon for everything to revolve around the person going through the process. It is almost as if time is suspended. If the experience is family centered, the family priorities shift, and if the person is to die at home, he or she often literally and figuratively becomes the center of the family.
Most dying people do not want to be alone. This does not mean they constantly want physical company, but they want to feel connected to those around them, to their loved ones, friends, even the caregivers who see them on a regular basis. To serve that person, it is important for all caregivers to be open to seeing and understanding what he or she might be feeling or thinking and the individual might be behaving in a certain way. It is of value to acknowledge and validate the needs of the person and the process the patient is experiencing. It is through connection that this can happen. There is a need to determine what the dynamics are with the individual patient and his or her family. These dynamics could positively or negatively affect receptivity to the level of care. When you are tuned into the other person and are able to feel the connection between the two of you, it is possible to know what they want and to serve him or her on the highest level. The way to connection is through communication.
We learn through our ability to communicate. Learning entails more questions. You want to know more, so you ask more. As Dr. M. Scott Peck states in Denial of the Soul: Spiritual and Medical Perspectives on Euthanasia and Mortality, (New York: Harmony Books, 1997), 152, "People tend to learn best when they have a deadline."
There does come a point when you know the answer is in the question. That is when the epiphany, or aha moment, occurs. Your knowing is on more than one level. This is possible for the patient and the caregiver. That is the catalyst for change, and you are never able to look at the event, concept, or experience in the same way. Change has happened at a fundamental level.
The urgency of illness is a great opportunity to push through old blockages and talk openly and honestly. However, families are often afraid to bring up anything emotionally challenging. They are concerned that it might cause further pain to the loved one. There is a need to be honest now about what is wanted to communicate—to release old wounds and give and receive forgiveness for hurts, small and large. Sometimes talking about disease changes the anxiety and fear and diminishes loneliness and isolation. For true communication to take place, there is a need to break through those blockages and meet each other on an authentic level.
Prepare yourself to expand your scope of thought. Have you ever had the experience of saying something to someone that was just the thing they needed to hear at precisely the moment? Did you see the look on the person's face? How did it feel? How did it change the relationship? Or did it happen to you? How did it make you feel? That is the power of true connection. Sometimes we only get it in isolated moments and then sometimes we can sit in silence and just be present in that knowing. There is such power in just being present and available to sit with and talk to a person who is dying about whatever he or she wants. Communication can occur on many levels that way.
As Clyde Johnson, puts it,
I would join, usually those guys, out on the front porch of this beautiful one hundred-year old house, sitting on the porch on 14th Street, just being present with the patient. I think that as small as we were we could be family-oriented rather than bureaucratic, like the hospitals and the bigger institutions are required to do. They are not going to ask an LPN or a CFO to go sit out on the porch and be present. So that meant a lot to me, and I think it meant a lot to the caregivers as well. They had that opportunity too. To be present with these terminally ill patients; more so than they could ever be in the hospital, because staffing ratios and things like that kept them away from the bedside. That is a real privilege, too—for people to let you into their personal feelings.
Oftentimes there is a need not to talk about trivial things anymore, but there may be difficulty in expressing that need or having it understood by those who care for them. What is of interest to patients may no longer be the football game, the news, or anything mundane about what is happening to them. Rather, their interest may be on their impact on those around them and what they are leaving behind. One of the ways the professional caregiver can serve the patient and family is to be a catalyst or buffer for the family to initiate those kinds of conversations. Fred Whitehurst, a bereavement manager, said, "You're modeling to them how to be with people when they are taking their last breaths. Have you all told her you love her? People know that now. They are better informed than they have ever been."
Excerpted from SOUL SERVICE by Robert Cowgill Christine Cowgill Copyright © 2013 by Christine Cowgill, MS, CRC. Excerpted by permission of BALBOA PRESS. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Part I: The Patient....................1
Chapter 1 Evolution of End-of-Life Service....................3
Chapter 2 The Patient....................11
Chapter 3 Patient Choices....................20
Chapter 4 The Fear of Pain and Suffering....................28
Chapter 5 Awareness of Death....................41
Chapter 6 The Near-Death Experience....................47
Chapter 7 Voices of the Dying....................56
Part II: The Caregiver....................67
Chapter 8 Those Who Serve....................69
Chapter 9 Those Who Are Called....................79
Chapter 10 Spiritual Experiences at Death....................88
Part III: Service from the Heart Space....................97
Chapter 11 Recognition of Spirit....................99
Chapter 12 Complementary Care....................108
Chapter 13 Training/Orientation for the Medical Professional....................122
Chapter 14 The Future of End-of-Life Care....................130
Appendix I: The Dying Person's Bill of Rights....................145
Appendix II: Resources....................147
About the Authors....................163
Most Helpful Customer Reviews
Soul Service is a fantastic resource, not only for the professionals of Hospice, but also for the general population. It is simple and to the point, yet has a strong psycho-spiritual essence. Death is a part of the process of living, something not to be feared, but to be openly accepted and treated with dignity both for oneself and others. This powerful guide takes a direct aim at shedding light on the actual experience by revealing what one may encounter during the last days of this journey we call life. The real stories from people on the front line combined with insights from the souls in the process of transition open the heart and mind to a grand exit into the next experience. Dr.Vern Morgan, Destranologist