Reading about hospice care and spirituality.
During my eight years as a hospice registered nurse case manager, I have brought together what I believe to be an excellent collection of reading for the lay person about death and dying and spirituality. Because I truly believe that our American culture is sorely in need of some education in the area of death and dying, I would like to share with you my list of favorites from my personal library.
In Final Gifts, Maggie Callanan and Patricia Kelley describe, in a very sensitive and interesting way, what happens to dying patients in the weeks and months preceding our final transition. I recommend this book to many of my families who indicate to me a desire to know more about what to expect as their loved ones begin their journey to the hereafter.
How We Die: Reflections on Life's Final Chapter is written by a physician, Sherwin B. Nuland, who, in fairly simple terms, presents a clear picture of several disease processes that eventually end in our demise. He also shares various philosophies and theories about why we age and die. In my work, I frequently teach other nurses, new hospice volunteers, and various lay persons about hospice, and this is one book I always recommend.
At Home with Dying: A Zen Hospice Approach, written by Merrill Collett, who worked with a Buddhist hospice in San Francisco, gives the reader common, everyday, tips on how to interact with and care for someone who has a chronic, terminal illness. It contains sections dealing with setting up the bedroom, eating, feeding, toileting, as well as an interesting section called, Dying: A Scenario.
Megory Anderson wrote Sacred Dying: Creating Rituals for Embracing the End of Life, a book dealing with ways families and loved ones can make a person's last days and hours a time of peace and comfort. Her suggestions provide numerous ways that caregivers can participate in providing a peaceful transition for their loved ones at a time when they often feel useless and helpless.
Handbook for Mortals: Guidance for People Facing Serious Illness by Lynn and Harrold gives very practical steps and activities that will prepare someone or the family, especially in the areas of finances or medical decisions, for the final days.
Making Friends with Death: A Buddhist Guide to Encountering Mortality by Judith L. Lief continues to be amongst my favorites. This book offers a non-Christian perspective on what to expect at the time of death and how we can begin now to prepare ourselves for the inevitable. The Buddhist tradition has studied death and dying and suffering for hundreds of years and, as a result, has gathered deep wisdom that is worth looking into.
The American Book of Dying by Richard E. Groves and Henriette Anne Klauser gives many examples of the deaths of contemporary people who became aware of their spiritual pain as they began living their last chapters of this life. It is a very interesting read, especially since each example gives detailed methods for looking at spiritual pain and working through those issues that tend to hold people back from what Groves calls a "happy death." He emphasizes that learning how to die teaches us how to live.
The Tibetan Book of Living and Dying by Sogyal Rinpoche is a classic and international bestseller that gives the reader a sense of the sacredness of life and death. Additionally, he includes a lengthy section on the benefits of daily meditation in preparing for the transition we all must make eventually. He emphasizes that "there is no greater gift of charity you can give than helping a person to die well."
In Who Dies? by Stephen Levine, we learn that life and death are seen as the perfect expression of being, each in its own moment, in its appropriate time. Stephen served with Elisabeth Kubler-Ross, one of the founders of the hospice movement in our country, and he brings a wealth of wisdom to all his work with dying people.
Halfway Across the River by Annette Childs, PhD, presents many different scenarios from the author's own experiences with people who had received diagnoses of a terminal condition. Subtitled, Messages of Hope from the Other Side, many of the stories she tells are of people who have not yet made their transition. I do see these as messages of hope, hope that something of us continues on after the body has deteriorated past the point of adequately serving as our host. I read the book in one sitting!
Nearing Death Awareness, written by Mary Anne Sanders, gives example after example of the symbolic languaging that dying people use. She subtitles her book, A Guide to the Language, Visions, and Dreams of the Dying. Some subjects discussed are deathbed visions, pre-death dreams, the timing of death, and of course nearing death awareness (signs that people know on some level that they will be making their transition soon).
Maggie Callanan, in Final Journeys: A Practical Guide for Bringing Care and Comfort at the End of Life, presents many topics (along with stories from her own practice as hospice nurse of 25 years) that are essential to understanding hospice philosophy and services. Some are: how hospice works, end-of-life decision making (especially in the area of resuscitation and nutrition and hydration), how to make wise choices when your family does not agree, and so on. Truly, the number of issues that can arise when considering hospice care are infinite! This book is well written and gives interesting examples of each scenario she presents.
It is my desire that you will find comfort, as well as helpful guidance, in the information found in these books. Each of these books has a wealth of valuable knowledge that I use every day in working with clients and families. I am fascinated by the depth and range of information found in them.
Very soon, the first wave of baby boomers who remain--and there are millions of us--will begin choosing our Medicare benefit and many will be looking at hospice care. As our health care system becomes more and more complex, people are forced to make difficult choices. I suggest reading these books to educate yourselves about the choices you will need to make in the near future. Know your own decisions, be clear about them, and make sure your family members are ready to execute your decisions in the event you are not able to do so.
Paula Schneider MPH, RN, CHPN, is a veteran registered nurse of 32 years and has served in hospice work for almost eight years. Her mission is to "lead myself and others to personal and spiritual health," and working in hospice has helped her fulfill her life's work. She currently serves as a registered nurse case manager for a hospice in Northern Nevada.