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RECOMMENDED READING AND PUBLICATIONS |
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Many of these books are available online from: Amazon.com, Barnes and Noble or Borders Books.
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| Agency for
Health Care Research and Quality (AHRQ):
(tel. 800-358-9295) Clinical Practice Guideline Number 9: Management of Cancer Pain; Quick Reference Guide for Clinicians (management of cancer pain); Patient Guide to Managing Cancer Pain; All available free, and excellent for anyone who is concerned about proper pain control. Explains the standards in the medical field for treating terminal cancer pain. Explains how dosages of narcotics are calculated and adjusted. See the online version from the AHRQ archives |
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American College of Physicians-American Society of Internal Medicine - End-of-LifeCare Consensus Panel. Physician's Guide to End of Life Care
A comprehensive manual designed to help professionals learn about and provide good palliative care. The book is divided into three sections containing clearly focused, practical information with illustrative cases. Topics include communications, relationship building, the goals of palliative care; evidence-based approaches to pain, depression, and delirium; intractable suffering; and legal, financial, and quality issues. |
| Armstrong-Dailey, A. and Zarbock Goltzer, S. (Eds.)
Hospice Care for Children
An excellent resource describing how to care for children with terminal illnesses - for hospice professionals. |
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Bennahum, D. (1996). The historical development of hospice and palliative care. In D. Sheehan, W. Forman (Eds.), Hospice and Palliative Care. Sudbury, MA: Jones and Bartlett, 1-10. |
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Bernardi, P. (1998). The Christian art of dying: a response to the assisted suicide movement.Yamauchi Lectures in Religion. New Orleans, LA: Loyola University (monograph). |
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Billings, J. (1998). The hospice medicare benefit: an appraisal at 15 years. Journal of Palliative Medicine, 1(2), 123-127. |
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Bruera, E., & Lawlor, P. (1998). Defining Palliative Care Interventions. Journal of Palliative Care 14(2), 23-24. |
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Brunelli, C., et. al. (1998) Quality-of-life evaluation: when do terminal cancer patients and health care providers agree? Journal of Pain and Symptom Management 15(3), 151-158. |
| Byock, I., M.D. (1997). Dying Well - Peace And Possibilities At The End of Life New York, NY: Riverhead Press. A sensitive book about end of life care and issues. Dr. Byock shares stories of the terminally ill which bring home the issues confronting any hospice patient or family. |
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Byock, I. (1998). Hospice and palliative care: a parting of ways or a path to the future?
Journal of Palliative Medicine, 1(2), 165-175. |
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Chevlen, E, MD and Smith, W.J. (2002). Power Over Pain How To Get the Pain Control You Need Steubenville, OH: International Task Force publications. Explains in plain language the intricacies of achieving excellent pain control in end-of-life as well as chronic and acute pain situations. This book belongs in the hands of anyone who is confronting pain, as a patient or health care professional. Available from Poweroverpain.com. |
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Christakis, N. & Escarce, J. (1996). Survival of medicare patients after enrollment in hospice programs. The New England Journal of Medicine, 335(3), 172-202. |
| Christian Medical and Dental Society (CMDA)
No Mercy Bristol, TN: Christian Medical and Dental Society. An important video revealing the dark side of physician-assisted suicide and euthanasia, which is not "merciful" at all. This important video documentary may be purchased by calling 888-231-2637 (Life and Health Resources) or CMDA at 423-844-1000/fax: 423-844-1017, 501 Fifth St., PO Box 7500, 37621 |
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Craddock, Dr. J.E. and Ford, RN, Cheryl (2005). Our Fight4Terri Victoria, BC, Canada, Trafford Publishing Our Fight4Terri reveals the facts underlying this tragic case as well as Terri Schindler Schiavo's actual condition. Reproducing actual sworn affidavits from those who examined her, cared for her and other original court documents, the book leaves no doubt about what really happened. Reminiscent of the Salem witch trials, this case stands as one of the single most unjust and misrepresented executions of our time; this book shows conclusively why. Though thousands of superficial and supposedly "authoritative" articles were written by uninformed lawyers, doctors and others, virtually no major news outlet investigated or reported the unvarnished truth of Terri's responsiveness and disability. No major news organization reported on the agenda being played out to make hospice the place to execute the unwanted disabled. Media bias in favor of euthanasia and hastening the death of those with severe disabilities resulted in a total censorship of the facts and agenda underlying this case. Our Fight4Terri reveals the steps leading to Terri's disability itself, the illegal placement of a nonterminal patient into hospice and includes exhaustive original source documents. If you finally want to know the truth, Our Fight4Terri brings the facts to you with clarity! |
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Doyle, D., Hanks, G., & MacDonald, N. (Eds.), (1998). Oxford Textbook of Palliative Medicine (2nd ed.) New York, NY: Oxford University Press. |
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Finn, L. (1985). The development of hospice in America. The Hospice Handbook Rockland, MD: Aspen Publications. |
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Fins, J., et. al. (1999). End-of-life decision-making in the hospital: current practice and future prospects.
Journal of Pain and Symptom Management 17(1), 6-15. |
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Fox, E., et. al. (1999). Evaluation of prognostic criteria for determining hospice eligibility in patients with advanced lung, heart or liver disease. Journal of American Medical Association 282(17) 1638-1645. |
| Gallaher-Allred, C.,Amenta, M., (Eds.) (1993).
Nutrition and Hydration in Hospice Care: Needs,
Strategies, Ethics New York, NY: The Haworth Press. |
| Gilbert, R. & Sims, D. Finding your Way After Your Parent Dies The experience of losing a parent in death is almost universal and yet many who feel this loss for the first time are surprised at how painful it can be. Even those well into adulthood are often taken aback by the deep sense of loneliness, the sense of being orphaned that the death of a mother or father can bring. In this book, Rev Richark Gilbert has created a compassionate guide for those struggling with the loss of a parent. Bringing many years of experience in bereavement counseling, Gilbert sketches out some of the issues that arise in the wake of a parent's death and offers practical suggestions for navigating these difficulties. Available at Amazon.com |
| Goldman, A. (Ed.) (1994). Care of the Dying Child London, U.K.: The Hospital for Sick Children. Excellent reference for hospice physicians and other professionals. |
| Gomez, C., MD. Regulating Death - Euthanasia and the Case of the Netherlands Dr. Gomez presents shocking evidence that euthanasia in the Netherlands is truly out of control and that safeguards for the so-called proper implementation of medical killing are routinely violated, and that the courts and physician review have not stopped or even condemned involuntary euthanasia cases. On the contrary, physicians in the Netherlands are encouraged to provide euthanasia (which cuts costs for the Dutch socialized medicine budget) and review of violations of the safeguards are entrusted to physicians who favor the option of euthanasia. Dr. Gomez explains that patient "willingness" to be euthanized is not always voluntary, but rather may be a result of pressures from the physician or a family feeling burdened by the patient's need for ongoing care. |
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Griffie, J., et. al. (1999). Integrating palliative care into daily practice: a nursing perspective. Journal of Palliative Medicine 2(1), 65-73. |
| Hendin, H., M.D. (1997). Seduced by Death - Doctors, Patients, and the Dutch Cure New York, NY: W.W. Norton & Company. Dr. Hendin is Professor of Psychiatry at New York Medical College and Executive Director of the Aerican Foundation for Suicide Prevention, TOLL-FREE: 888-333-AFSP, PHONE: 212-363-3500, http://www.afsp.org Dr. Hendin has presented the results of exhaustive research and interviews about euthanasia (medical killing) in the Netherlands and its impact on patient rights. He clearly shows how patients are often pressured into euthanasia and how euthanasia may be performed on patients who have not given permission, were not informed of the intention to euthanize them, or who were depressed and may have decided against euthanasia if they had been offered psychiatric counseling. Euthanasia represents one of the greatest threats to real hospice care in the world. Where euthanasia flourishes, education in pain management and hospice declines. |
| Ignatoff, A., M.S.. (2005). Remembering Terri Schiavo: Reflections of a Health Care Warrior Morrisville, NC: LuLu Press. This is a memorial to Terri Schiavo. It is an analysis of her life and death from a medical sociological perspective. Her case is very important because it will have an impact on the disabled population and may lead to euthanasia. It is important for people in the nursing home and hospice industry to be familiar with this case. |
| Irish, D, Lundquist, L, Nelson, V. (1993). Ethnic Variations in Dying, Death and Grief Bristol, PA: Hemisphere Press. |
| Kubler-Ross, E., M.D. (1969). On Death and Dying New York, NY: Macmillan. The classic reference on death and the dying process. Well-accepted and well-researched conclusions. One of the most important pivotal works with world-wide impact. Written by one of the key researchers of hospice. |
| Kubler-Ross, E., M.D. (1975) Death: The Final Stage of Growth Englewood Cliffs, NJ |
Kuebler, K:
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Kinzbrunner, B. (1998). Hospice: 15 years and beyond in the care of the dying. Journal of Palliative Medicine, 1(2), 127-137. |
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Kuhl, David, MD (2002). What Dying People Want Practical Wisdom for the End of Life Cambridge, MA: Public Affairs - Perseus Books Group Written with great sensitivity, compassion and understanding, Doctor Kuhl immediately pulls one into the realities and inner thoughts confronting both patient and health care provider when dealing with terminal illnesses. This book provides numerous stories from the terminally ill and shares what can be learned from each of them. Should be read by not only every terminally ill patient and their families, but also by every health care professional in the field! It reveals how to relate in a way that honors the patient and the great traditions of hospice and palliative care. Must reading for anyone interested in end-of-life care! Available from Amazon.com. |
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Lattanzi-Licht, M., Mahoney, J., & Miller, G. (1998). The Hospice Choice: In Pursuit of a peaceful Death. New York, NY: Simon & Schuster. |
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Lynn, J. (1997). An 88-year-old woman facing the end of life. Journal of the American Medical Association, 227(20), 1633-1640. |
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Lynn, J. (1998). Complaints about hospice: growing up or going wrong? ABCD Exchange, 1(9), 2-7. |
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MacDonald, N., (1999). Palliative Medicine: A Case Based Manual. New York, NY: Oxford University Press |
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Mahoney, J. (1998). The medicare hospice benefit - 15 years of success. Journal of Palliative Medicine, 1(2), 139-146. |
| Marker, R, PhD (1993). Deadly Compassion New York NY: William Morrow & Company. This is the book revealing the inside story of the euthanasia movement, what the real agenda is, and how dangerous the pro-euthanasia forces are to public safety. Professor Marker is the founder of the International Anti-Euthanasia Task Force and is known internationally as an advocate for patients' rights and the efforts to stop euthanasia. If you have any concerns at all about the ethics and politics involved in the euthanasia and "physician-assisted suicide" debate, you MUST read this book! Learn how one of the co-founders of the Hemlock Society, Ann Humphry, realized that her life's work to promote euthanasia was a mistake and the price she paid for her involvement with the pro-euthanasia advocates. Find out how little "compassion" the pro-euthanasia forces really have. Find out why pro-euthanasia advocates may end up destroying the compassionate administration of real quality hospice care. You can order Deadly Compassion from the International Anti-Euthanasia Task Force. |
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Martinez, J. (1996). The Interdisciplinary Team. In: D. Sheehan & W. Forman (Eds). Hospice and Palliative Care: Concepts and Practice. Boston, MA: Jones and Bartlett Publishers, 21-31. |
National Hospice and Palliative Care Organization
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| Oliver, Rev. S, (1998). What the Dying Teach Us ... Lessons on Living Binghamton, NY: The Haworth Pastoral Press. From an experienced hospice minister comes a revelation of the heart of the Hospice mission. Written from the heart, this book conveys the inner experience of hospice care, death and dying and questions about the meaning of life, death and the Spirit. Read along and get back in touch with what is really going on during the most intimate moments of the dying process as well as life itself. Distributed by Hospice Patients Alliance. You can purchase it online at Amazon.com now. |
| Panzer, R. (1999). The Hospice Patients Alliance Family Guide to Hospice (What No Hospice Will Tell You!)
Rockford, MI: Hospice Patients Alliance Press. A hands-on guide to obtaining the best care for the terminally ill, with tips on bedside care and problem resolution. The only consumer-oriented guide to hospice care written from the patient-family perspective which lists all the federal standards of care for hospice care and explains what services you are entitled to receive in hospice. Covering every major concern families and patients have, the Guide to Hospice E-Book is priced at $9.95. Order the E-book and read it now on your computer after a quick download! To read the Guide as an E-book, all you need is the free Microsoft Reader software which you can download from Microsoft. |
| Picardie, R (1998). Before I Say Goodbye
New York, NY: Henry Holt and Company. A revealing book written by a terminally ill woman who was an acclaimed journalist and writer who died of breast cancer at the age of 33 in England. Excerpts from her personal letters share some of her innermost thoughts. This account is all at once a very sad, funny, witty and extremely relevant book. Ruth Picardie wanted others to know about her experience in the dying process, even writing about her decline in the English "Observer Life" magazine before her death in 1997. |
| Ray, K. I'm Here to Help: A Guide for Caregivers, Hospice Workers, and Volunteers This practical, caring, step-by-step guide is a standard text for the millions of professionals who are committed to taking care of those suffering from chronic or terminal illness and their families. I'm Here to Help imparts the skills and techniques necessary to facilitate communication in a succinct style and provides tips on how to initiate painful discussions, listen effectively, manage defensiveness in both the family and patient, and other vital issues. Available at Amazon.com. |
| Rohling, D. (1990). Funeral Information: The Consumer Guide Nampa, Idaho Mr. Rohling provides the inside view of the funeral home industry with comprehensive details on what types of decisions must be made when dealing with funeral homes, what services are available, how to get the best deal for services and how to avoid any unnecessary charges when arranging for funeral services. This book will likely save you thousands of dollars if you use its advice! Includes practical worksheets to guide you through the process. Priced at $19.95 plus shipping. You can purchase it online now. |
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Saunders, C., & Baines, M. (1984). Living With Dying: The Management of Terminal Disease. New York, NY: Oxford University Press. |
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Saunders, C., Summers, D., & Teller, N. (1981). Hospice: The Living Idea. London, England: Edward Arnold. |
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Scott, G. (1995). Challenging conventional roles in palliative care. Nursing Times, 91(3), 38-39. |
| Sheehan, D, Forman, W (1996). Hospice & Palliative Care: Concepts & Practice Boston, MA: Jones & Bartlett. |
| Singh, K The Grace In Dying: How We Are Transformed Spiritually as We Die "Kathleen Dowling Singh opens our eyes to the spiritual aspects of dying, as Sherwin Nuland and Elisabeth Kubler-Ross did for the physical and psychological. Her message...can offer reassurance throughout life." - (review by Steven A. Schroeder, M.D., president, The Robert Wood Johnson Foundation). Available at Amazon.com. |
| Smith, W (2001). Culture of Death: The Assault on Medical Ethics in America Encounter Books. An attorney's searing analysis and expose of the alarming trend in hospice and health care in general to de-sanctify the value of human life and to intentionally withhold needed treatments, perform euthanasia, harvest organs from the dying, fail to attempt to help those who could recover from injuries or illness. A must read book for anyone concerned about the medical killing of patients throughout the USA. Available online at: Amazon.com. |
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Steinhauser, K., et. al. (2000). Factors considered important at the end of life by patients, family, physicians, and other care providers. Journal of the American Medical Association 284(19), 2476-2482. |
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Teno, J., & Coppola, K. (1999). For every numerator, you need a denominator: a simple statement but key to measuring quality in care of the "dying". Journal of Pain and Symptom Management, 17(2), 109-113. |
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Tobin, D., (1999). Peaceful Dying. New York, NY: HarperCollins Publishers. |
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Vogt, C. P., (2004). Patience, Compassion, Hope, And The Christian Art Of Dying Well. Lanham, MD: Rowman & Littlefield Publishers. Patience, Compassion, Hope, and the Christian Art of Dying Well combines a strong pastoral sensibility with the best of contemporary scholarship in Christian ethics to answer the pressing questions of how Christians should respond to suffering and death. By mining the rich tradition of virtue ethics, Christopher Vogt uses the virtues of patience, compassion, and hope as a framework for specifying the shape of a good death, and for naming the practices Christians should develop to live well and die well. .... Through a careful analysis of Luke's passion narrative, Vogt uses Jesus as the primary model for being patient in the face of death and for dying well. Christopher P. Vogt is assistant professor of theology and religious studies at St. John's University, New York Available for $ 19.95 Paperback at Rowman & Littlefield |
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Walsh, D. (1998). The medicare hospice benefit: A critique from palliative medicine. Journal of Palliative Medicine, 1(2), 147-149. |
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Wolfe, M. (2003). Menya, an end of life story. Toronto, Canada; Grubstreet Books This is a heart-wrenching but heart-warming story; a moving account about the author's 36 year old daughter's battle with inflammatory breast cancer and her final days receiving the very best of care at Trinity Home Hospice in Toronto, Canada. --- And from the foreward: " ... death may not be preventable, but it can be softened by acts of gentle kindness. It is not only the very sick person who is the recipient of the spiritual peace which intermittently accompanies skilled and generous palliative care. Care-givers find themselves deeply and forever changed..." email: Grubstreetbooks |
If you have questions about hospice, we hope that you will take the time to visit the hundreds of pages at our website, read our Guide to Hospice Care and visit our resources and links section (with hundreds of vital resources listed) Hospice Patients Alliance affirms that all human life is inherently valuable and that the role of hospice nurses, physicians and all other staff is to alleviate suffering and provide comfort for the sick and dying without sanctioning or assisting their suicide. A death with dignity allows for a natural death in its own time, while doing everything possible to assure relief from distressing symptoms. Hospice Patients Alliance works hard to promote quality hospice care throughout the USA. If you would like to support our mission, we hope you will consider supporting our mission through a donation. Hospice Patients Alliance is a 501(c)(3) charitable nonprofit corporation and your donations are deductible to the full extent allowed by law. Sign up for the Hospice-Issues Online Email Discussion Group at Hospice Patients AllianceClick on the Hospice Issues link above and then you can sign up to join the discussion of issues in hospice and end of life care, and you will begin to receive email messages from the members of the discussion group. All you need to do is enter your email address, along with your own password, and click the "Subscribe" button. |
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