A Handbook for Spiritual Care Near the End of Life

By Jennifer Sutton Holder, Jann Aldredge-Clanton

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80 pp., 5 x 7.5

  • Paperback ISBN: 978-0-8078-5529-4
    Published: March 2004
  • eBook ISBN: 978-0-8078-6769-3
    Published: March 2004

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Author Q&A

Copyright (c) 2004 by the University of North Carolina Press. All rights reserved.

A Conversation with Jennifer Sutton Holder, co-author, with JannAldredge-Clanton, of Parting: A Handbook for Spiritual CompanionshipNear the End of Life

Q: Who is this book for?
A: The book was written for anyone who makes the intentional, courageous choice to travel alongside someone who is nearing the end of life as a spiritual companion. This could be a loved one, a close friend or someone who has a vocation of caring for those in the closing chaptersof life.

Q: How do you hope that this book will be used?
A: I hope the book will be used to make a very difficult journey a little less tough. I hope it will teach the gentle art of companioning those with little time left to live. I hope it will add meaning and bring loving touches to both the one who is at life’s end and the one traveling with him or her.

Q: Throughout Parting, you compare the end of life to a journey. Why is this such an apt metaphor?
A: I truly believe life is a journey with a beginning, middle and endpoint, at least for our human body. When we were trying to take reams of materials from the many interviews we did with experts in end of life care (including persons who were very near death) the journey metaphor became one easy way to organize all their wisdom. Thinking of spiritual companionship in terms of what to pack, how to add beautiful scenery, how to rest when both travelers become weary, and, finally how to part at the end was a comforting way to write this book and, hopefully, to read it.

Q: What is the most important thing that one can offer to someone with alife-threatening diagnosis?
A: Gentle companionship. Respect for the wonder of individuality, originality, and creativity making that person take his or her diagnosis and weave it into life’s journey in a totally unique way. Commitment to participate in the experience so the person does not have to handle such a hard thing alone.

Q: Can a person who does not consider himself or herself religious offerspiritual care to the dying? And what if the terminally person doesn'tpractice a religious faith?
A: Spiritual companionship can happen in a religious context, or, just as well, apart from it. For example, the spiritual companion might be a friend from church or synagogue, and worshipping together might be part of the expression of spiritual care. But an equally valuable spiritual companionship can occur between two people without a community of faith. Spiritual companionship, for both travelers, simply takes commitment to travel together in search of meaning, solace, dignity, beauty, hope that transcends illness and death, and peace of mind.

Q: At sixty-four pages, Parting seems quite brief. Why did you choose towrite such a short book on such a big topic?
A: Jann and I both are hospital chaplains. We see firsthand the weariness that settles in often to those who choose this sort of spiritual companionship near the end of life. I wanted the book to be gentle reading, with very short chapters that invite stopping and picking up again often. Our editors suggested breaking up the chapters with many subheads to further help people find it easy to read and refer back to. We just have a personal and professional awareness of the weariness of this journey, and wanted to help with something that soothes, not taxes, the mind.

Q: You mention that two issues loom large at the end of life: managingpain and having spiritual needs met. How are these needs connected?
A: Often, not always, physical pain and spiritual pain are interwoven.We see in our work every day that spiritual peace can influence the amount of physical pain. For example, a person very agitated and in pain can be comforted by a quiet conversation about their loved ones, or a time in life that was rewarding. If they are already unresponsive verbally, a person can be soothed by music or healing touch like warm lotion rubbed on the hands and feet. To reconcile with someone from whom the dying person has been estranged, or to hear the words "I forgive you" can be powerful spiritual anesthetics. Our spiritual peace and the level of our pain so often are inter-related.

Q: How can one be an effective advocate for a dying person?
A: JBy gaining an understanding of what is important to them about howthey are cared for at the end of life.
Do they want to be sustained on a ventilator?
Do they want cardiopulmonary resuscitation attempted if their heart stops?
Do they want to be fed via a feeding tube?
Do they want to die at home or in a hospital?
These are all very important decisions that have a definite spiritual overlay. The spiritual companion can help the person obtain and fill out the dreary paperwork that reflects how they feel about the end of the journey and then can advocate that those choices be respected when the time comes. An important decision is when to leave aggressive treatment and go to comfort care only. The spiritual companion can help the one who is dying make that difficult turn in the road.

Q: What advice do you have for the person who feels ill-prepared to bean end-of-life companion?
A: I have a great deal of empathy with that person. One of the things I enjoy saying about the role of spiritual companion is that it is companionship on a trip not of our choosing, to a destination beyond our understanding, with an itinerary beyond our control. And yet, with love and compassion as an incentive to just try it, it is a journey that is rich beyond imagination. My advice is to just try it, just once, with someone you love. It can become a trip you want to take again and again because of what you both experience.

Q: What if a loved one has special end-of-life wish?
A: Go for it! With creativity, and sometimes support from medical caregivers and technologies like portable ventilators or oxygen tanks, there is so much we can do to make these wishes possible, even though the person is weak. It is true that at times the wishes have to be modified. In the book there is one story where a walk along the beach had to become a drive along the beach, and finally a shoebox with sand and seashells for the dying person to sift through his fingers in a hospital bed. But the point is the expression of trying to help make every day have something of pleasure, an important wish we all share.

Q: How can one provide spiritual care for a dying loved one who lives far away?
A: Connect across the miles any way possible. Keep a stack of postcards pre-stamped and addressed to just drop a line or two each week. Call regularly. E-mail is great for long-distance spiritual care, especially if you add attachments of photos or files with entertaining or inspiring reading. Care packages are so much fun, with treats that you know are special to the one nearing the end of life. Tell the person a time each day you will be thinking of and praying for them, and do it! One patient had long-distance friends who pooled funds and got her a beeper, and when they thought of her they beeped. She had a steady stream of beeps daily that reassured her of their love and concern. Long-distance spiritual companionship only invites even more creativity. And as we wrote in the book, if choosing whether to travel to be near the one who is dying sooner or later, go sooner.

Q: What kind of response have you received to Parting? Has it already had an impact?
A: The response has been very gratifying from persons at our hospital who are using the book both for personal journeys with family members and as nurses and doctors caring for the dying. One church group used it for a study series on end of life care. Our palliative care team has been very positive about it and tell me they recommend it often. It is a curious book in that you wouldn’t think to buy it before a really difficult time in life, a time that might not lend the energy to go out and find it. But those who have found it have told us what a wonderful help it is. My wish would be for it to be in the hands of hospice organizations and pastors who know to recommend it when these difficult times come, rather than expecting people to find it on their own when they are either contemplating or already active in spiritual companionship for those near the end of life.