References

General Interest Books

General Interest Books for Advanced Readers

Home and Hospice Care

Pain and Symptom Control

Legal and Moral Rights and Responsibilities

Grief and Bereavement

Personal Stories

Long-Term Care

Books on Death

The World Wide Web

The following is a selection of recommended books. Some were used to research and prepare this book. They certainly do not include all the books available on the various subjects in this book. My first recommendation is that you check your local bookstore and library for the most recent and up-to-date books on the topic you are most interested in.

When checking any source for health care information, expect to find information that might be unsettling. The information may tell you things you didn't expect or didn't want to know and it may have been written for a professional audience rather than for patients and families.

Some of the books in this reference list may have more recent, up-dated editions. If a particular author interests you, check the library for their other books.

The companion book to this one, by the same author, is Caring for Loved Ones at Home published by Resources Supporting Family and Community Legacies Inc. in 2001. It provides basic home nursing suggestions to family members, friends and neighbors caring for someone at home.

The Childhood Cancer Foundation ­ Candlelighters Canada probably has the most extensive list of resources available in Canada for children of all ages who are dying or bereaved. Families can order a catalogue by calling 1 (800) 363-1062 or visit their web site at www.candlelighters.ca Their resources are designed for children, teenagers, parents, siblings, and grandparents.

There are books in this Reference section that fit into more than one category. Please look in several categories for the books that will help you.



General Interest Books

Although these books are recommended for the general public they are also useful for caregivers involved in the care and treatment of people with terminal illness and their families. As well, books listed in the section recommended for professional caregivers or advanced readers may also be of interest to the general public.

Adams, David W. and Deveau, Eleanor J. (1988). Coping with childhood cancer: Where do we go from here? Hamilton, Ontario: Kinbridge Publications.

Berry, Carmen Rene. (1989). When helping you is hurting me: Escaping the Messiah trap. New York: Harper and Row. Provides fresh insights into the problems of neglecting one's personal needs in order to help others.

Bliss, Shepherd (Ed.). (1985). The new holistic health handbook. Lexington, Mass.: Stephen Greene Press. Overview of holistic health practices and health centers in the U.S. and Canada.

Brody, Jane E. (1997). Jane Brody's The New York Times book of health. New York: Time Books.

Buckman, Robert. (1992). I don't know what to say: How to help and support someone who is dying. Toronto: Key Porter. A book written specifically for the friends and family of a dying person.

Canadian Medical Association. (1997). First aid manual: Emergency procedures for everyone at home, at work, or at leisure. Montreal, PQ: Reader's Digest.

Carroll, David. (1991). Living with dying: A loving guide for family and close friends. New York: McGraw-Hill Book Company. Question and answer format covering the emotional and physical needs of the patient, family and friends.

Collett, Merrill, (1999). At home with dying: A Zen hospice approach. Boston, MA: Shambhala.

Dass, Ram and Gorman, Paul. (1987). How can I help?: Stories and reflections on service. New York: Alfred A. Knopf. Using stories and quotes to help identify ways for professional caregivers to help those receiving services.

Duda, Deborah. (1987). Coming home: A guide to dying at home with dignity. New York: Aurora Press.

Etue, Elizabeth with P. D. Chalmers. (1985). Take charge of your health: A personal health record and reference. Toronto: Summerhill Press. A pocket size personal health record.

Hanson, Peter G. (1985). The joy of stress. Toronto: Hanson Stress Management Organization. Examines physical and mental causes and effects of stress and how to turn stress into a positive, energizing force.

Harris, Dan R. (1998). Aging sourcebook. Detroit: Omnigraphics. Examines social, medical, legal, financial, elder care, lifestyles and dying.

Inlander, Charles B. with Ed Weiner. (1997). Take this book to the hospital with you. Emmaus, Pennsylvania: St. Martin's Mass Market Press. People's Medical Society consumer guide for patients going into hospital. Critical of the medical profession, describes ways to take control of your own medical care.

Kaufman, Barry Neil. (1979). Giant steps. New York: Fawcett Crest. Through personal histories this book gives a back-to-basic form of therapy that encourages people to take control of their lives. One story deals with a teenager learning to cope with his mother's terminal illness.

. (1977). To love is to be happy with. New York: Fawcett Crest. Describes 'Option Process' as a process of self-fulfillment based on the assumption that we have choices and can choose happiness rather than depression, anger and pain.

Kavanaugh, Robert E. (1972). Facing death. Los Angeles: Nash. Sensitive account of a personal and professional approach to facing death and meeting the emotional needs of someone who is dying.

Kuhl, David. M.D. (2002). What dying people want: Practical wisdom for the end of life. Toronto: Anchor Canada

Lamm, Maurice. (1969). The Jewish way in death and mourning. New York: Jonathan David Publishers. The Jewish traditions re: preparation of the body after death for the funeral and burial, the funeral service, the mourning observances including year-long observances, special situations and life after death.

Lindenburger, Sharon. (1998). The Canadian consumer's guide to health care: How to get the health care you need when you need it. Toronto: ON: McGraw-Hill Ryerson.

Linn, Erin. (1986). I know just how you feel...avoiding the cliches of grief. Cary, Illinois: The Publishers Mark.

Little, Deborah Whiting. (1985). Home care for the dying: An authoritative, reassuring guide to physical and emotional care. New York: Doubleday.

Maté, Gabor. (2004). When the body says no. Toronto: Vintage Canada. Dr. Maté is a palliative care specialist and family doctor who looks at the effects of stress on chronic illnesses.

Mitford, Jessica. (1998). The American way to death. New York: Simon and Schuster. Critical review of the funeral industry in the United States.

Moore, Thomas. (1994). Soul mates: Honoring the mysteries of love and relationship. New York: Harper Perennial.

Morgan, Ernest and Morgan, Jenifer (Ed.). (1994). Dealing creatively with death: A manual of death education and simple burial. Burnsville, NC: Celo Press. Review of death education, home care, bereavement, righttodie issues, simple (Memorial) burials and an annotated bibliography.

Mount, Balfour M. (1983). Sightings in the valley of the shadow: Reflections on dying. Downers Grove, Ilinois: InterVarsity Press.

Munsch, Robert. (1986). Love you forever. Toronto: Firefly Books. A book about the circle of life and the mutual gift of love through the ages.

Noyes, Diane Doan with Mellody, Peggy. (1988). Beauty and cancer. Los Angeles: AC Books.

Nulan, Sherwin B. (1995). How we die: Reflections on life's final chapter. New York: Vintage Books.

Panzer, Ron. (1999). The Hospice Patients Alliance family guide to hospice care: What NO hospice will tell you! Rockford, Michigan: Self-published. Guide to effective care in the U.S. as well as severe warnings of what can go wrong within American hospice care.

Portnow, Jay with Houtmann, Martha. (1987). Home care for the elderly. Toronto: Pocket Books. For those practicing health care in rural areas with few physicians or health care professionals available.

Raphael, Simcha Paul. (1996). Jewish view of the afterlife. New York: Jason Aronson.

Rhodes, Ann. (1997). Take care: A practical guide for helping elders. Toronto: ON: HarperCollins Publishers. For those practicing health care in rural areas with few physicians or health care professionals available.

St. John Ambulance. The Complete Handbook of Family Health Care. Ottawa: St. John Priory of Canada, (Latest edition). Review of home care, medication, bed care, cleaning and treatments.

Sobel, David and Tom Ferguson. (1985). The people's book of medical tests. New York: Summit Books. Sobel states that 25-50% of the 10 billion medical tests performed every year in the U.S. are not medically necessary. Describes over 200 tests including why the test should be done, how to prepare, what to expect, what the risks are and what the results may mean.

Stedeford, Averil. (1994). Facing death: Patients, families and professions. London: Oxford Sobell Publications. Explores some of the issues facing those involved when a person faces death. Concise, well presented and easy to read.

Szabo, Louise and Olson, Joan. (2004). Goodbye with love and dignity. Ottawa, ON: Olson Publishing.



General Interest Books for Advanced Readers

The resources listed below are more technical in nature and often written specifically for professional caregivers but may also be interesting for non-professionals.

Adler, Robert (Ed.). (1981). Psychoneuroimmunology. New York: Academic Press. A study of the role of emotions and stress to the immune system and its effects on infection resistance, allergies and cancer.

Ainsworth-Smith, Ian and Speck, Peter. (1982). Letting go: Caring for the dying and bereaved. London: SPCK. Explores the pastoral role of the caregivers, both professional and informal and their needs for support and care.

Armstrong, Karen. (1993). A history of God: The 4,000-year quest of Judaism, Christianity and Islam. New York: Ballantine Books.

Burns, A. August, Lovich, Ronnie, Maxwell, Jane, and Shapiro, Katharine. (1997). Where women have no doctor: A health guide for women. Berkeley, CA: The Hesperian Foundation. For those practicing health care in rural areas with few physicians or health care professionals available for women.

Byock, Ira. (1998). Dying well: Peace and possibilities at the end of life. New York: Riverhead Books.

Callahan, Maggie and Kelly, Patricia. (1997). Final gifts: Understanding the special awareness, needs and communication of the dying. New York: Bantam. Uses patient scenarios and discussions as a learning tool.

Cassel, Eric J. (1982). "The culture of suffering and the goals of medicine", New England Journal of Medicine, 306(11):639-645. An important article on the nature of suffering.

Chidwick, Paul. (1988). Dying yet we live. Toronto: Anglican Book Center. Our response to the spiritual needs of people who are dying.

Columbia University Press. Foundation of Thanatology Series. Includes such topics as psychological aspects of terminal care, anticipatory grief, bereavement, nurse as caregiver and others.

Corr, Charles A. and Balk, David E. (Eds.). (1996). Handbook of adolescent death and bereavement. New York: Springer Publishing.

Corr, Charles A. and Corr, Donna M. (Eds.). (1996) Handbook of childhood death and bereavement. New York: Springer Publishing.

Corr, Charles A.; Morgan, John D.; and Wass, Hannelore. (Eds.). (1993). International work group on death, dying and bereavement: Statements on death, dying and bereavement. London, Ontario: Self-published through King's College.

Corr, Charles A.; Nabe, Clyde M.; Corr, Donna M. (1996). Death and dying: Life and living. New York: Brooks/Cole Publishing.

Corr, Donna M. and Corr, Charles A. (Eds.). (1990). Nursing care in an aging society. New York: Springer Publishing.

DeSpelder, Lynne and Strickland, Albert Lee. (1996). The last dance: Encountering death and dying. (4th ed.). Mountain View, California: Mayfield Publishing. Standard 'death, dying and bereavement' textbook.

Doka, Kenneth J. and Morgan, John. (Eds.). (1993). Death and spirituality. Farmingdale, New York: Baywood Publishing.

Dossey, Larry. (1995). Healing words: The power of prayer and the practice of medicine. San Francisco: HarperSanFrancisco.

Dossey, Larry. (1989) Recovering the soul: A scientific and spiritual approach. New York: Bantam, Doubleday, Dell.

Droege, Thomas A. (1987). Guided grief imagery: A resource for grief ministry and death education. New York: Paulist Press.

Fairchild, Ray W. (1980). Finding hope again: A pastor's guide to counseling the depressed. New York: Harper and Row. A review of pastoral counseling that examines different types of depression, the meaning of hope, working with health professionals, various strategies and working with the bereaved.

Feifel, Herman (Ed.). (1959). The meaning of death. New York: McGraw-Hill. One of the earliest collections of academic essays on the subject of death. Feifel has been called the 'grandfather' of the modern hospice movement.

. (1977). New meanings of death. New York: McGraw-Hill. Updated version of his earlier collection of academic essays.

Feinstein D., and Mayo P. (1990). Rituals for living and dying from life's wounds to spiritual awakening. San Francisco: Harper.

Garfield, Charles, Spring, Cindy, and Ober, Doris. (1997). Sometimes my heart goes numb: Love and caregiving in a time of AIDS. San Francisco: Jossey-Bass.

Fisher, Rory; Ross, Margaret M. and MacLean, Michael J. (2000). A guide to end-of-care for seniors. Ottawa and Toronto: Universities of Ottawa and Toronto. For those practicing health care with elders, this book provides guideline and 'best practice' suggestions to improve the care of elders at the end of life including information on how different cultural and aboriginal groups have similarities and differences in care needs.

Gentles, Ian (Ed.). (1982). Care for the dying and the bereaved. Toronto: Anglican Book Center. Discusses palliative care and dying at home plus bereavement, children with terminal illness, anti-euthanasia and Christian dying.

Kalish, Richard A. (Ed.). (1980). Death and dying: Views from many cultures. New York: Baywood Publishing.

Kuhl, David and Wilensky, Patricia. (1999). "Decision-making at the end of life: A model using an ethical grid and principles of group process." Journal of Palliative Medicine 2, no. 1: 75-86.

Latimer, Elizabeth J. (Ed.). (1996). When a patient is dying....: A colloquium on the care of the dying patient. Toronto: Ontario Medical Association.

Marrone, Robert. (1997). Death, mourning and caring. London: Brooks/Cole. Covers most aspects of death and bereavement with over 1,100 references.

Mead, Frank S. revised by Hill, Samuel S. (1995). Handbook of denominations in the United States (10th Edition). Nashville, TN: Abingdon Press.

Omega International Journal for the Psychological Study of Dying, Bereavement, Suicide and other Lethal Behaviors. Westport, Connecticut: Greenwood Press, Inc. 51 Riverside Avenue, 06880.

Ontario Multifaith Council on Spiritual and Religious Care. (1995). Multifaith information manual. Toronto: Self-Published.

Platt, Nancy Van Dyke. (1980). Pastoral care to the cancer patient. Springfield, IL: Charles C. Thomas. Spiritual care for patients with a terminal illness.

Smith, W. J. (1988). AIDS: Living and dying with hope: Issues in pastoral care. New York: Paulist Press.

Stack, Stephen and Feifel, Herman (Eds.). (1997). Death and the quest for meaning. New York: Jason Aromson.

Stillion, Judith M. (1985). Death and the sexes: An examination of the differential longevity, attitudes, behaviors and coping skills. New York: Hemisphere Publishing Corporation. Sexism in death, sex differences in longevity, sex roles and death attitudes, bereavement and grief, death education and counseling.

Tallmer, Margot, DeSanctis, Peter N. et. al. (1984). Sexuality and life threatening illness. Springfield, Illinois: Charles C. Thomas.

Turnbull, Richard (Ed.). (1986). Terminal care. Washington, DC: Hemisphere Publishing. Symptom control, bereavement, staff stress and education plus terminal care in rural areas.

Vachon, Mary L.S. (1987). Occupational stresses in the care of the critically ill, the dying and the bereaved. New York: Hemisphere.

Wass, Hannelore, Corr, C.A., Pacholski, R.A., and Forfar, C.M. (1985). Death education: An annotated resource guide, II. Washington, DC: Hemisphere Publishing Corp. Primarily for teachers in death education but also for other caregivers, with an extensive list of resources. Part of a series of guides in Death Education.

Weisman, Avery D. (1972). On dying and denying: A psychiatric study of terminality. New York: Behavioral Publishing. Describes the stages a person with a terminal illness.

Weisman, Avery D. (1974). The realization of death: A guide for the psychological autopsy. New York: Jason Aronson. Examines psychological autopsies and how they can provide information on why a death occurred at a particular time and what events before the death may be related to it.

Weisman, Avery D. (1993). The vulnerable self: Confronting the ultimate questions. New York: Insight Books.

Werner, David with Thuman, Carol and Maxwell, Jane. (1992). Where there is no doctor: A village health care handbook. Berkeley, CA: The Hesperian Foundation. For those practicing health care in rural areas with few physicians or health care professionals available.

Woodward, J. (1990). Embracing the chaos: Theological responses to AIDS. London: SPCK.



Home and Hospice Care

Baycrest Center for Geriatric Care. (1996). Visiting with elders: A guidebook for family and friends. Toronto: Self-published.

Bennett, Laurie, Abrams, Barbara, and Cooney, Larry. (1996). A practical guide for families when a loved one is dying. Mississauga, Ontario: Hospice of Peel.

Buckingham, Robert. (1983). The complete hospice guide. New York: Harper Row.

Carey, Deborah Allen. (1986). Hospice inpatient environments: Compendium and guidelines. New York: Van Nostrand Reinhold.

Deachman, Marilyn and Howell, Doris. (1998). Supportive care at home: A guide for seriously ill patients and their families. Markham, Ontario: Knoll Pharma.

Du Boulay, Shirley. (1984). Cicely Saunders: The founder of the modern movement.. London: Hodder & Stoughton. Biography of Dame Saunders, founder of St. Christopher's Hospice.

Hall, Beverly. (1988). Caring for the dying: A guide for caregivers in home and hospital. Toronto: Anglican Book Center. A practical guide for both professionals and volunteers.

Haller, James. (1994). What to eat when you don't feel like eating. Hantsport, Nova Scotia: Lancelot Press. A cookbook for cancer patients filled with delicious recipes and humor.

Hospice King. (1984). Hospice King manual. King City: Self-published. A practical guide to home care for non-medical hospice care workers including information on feeding and food suggestions.

Infeld, Donna Lind; Gordon, Audrey K.; and Harper, Bernice Catherine. (1995). Hospice care and cultural diversity. New York: Haworth Press.

Irish, Donald P; Lundquist, Kathleen F.; and Nelsen, Vivian Jenkins. (Eds.). (1993). Ethnic variations in dying, death and grief. Bristol, PA: Taylor and Francis.

Jones, Charmaine M. and Pegis, Jessica. (1994). The palliative patient: Principles of treatment. Markham, Ontario: Knoll Pharma.

Krieger, Dolores. (1992). The therapeutic touch. New York: Simon and Schuster. A how-to-book describing the therapeutic touch technique of natural healing taught in various universities in the U.S.

Lamerton, Richard. (1991). Care of the dying. New York: Pelican. Extensive bibliography of journal articles for professionals plus overview of hospice care and statistics.

Langley Hospice Society. (1994). Death, dying and bereavement: A practical guide. Langley, BC: Self-published.

Lepine, Lorraine. (September, 1982). Palliative care in Canada. Ottawa: Policy, Planning and Information Branch, Department of National Health and Welfare. Government of Canada report on palliative care in Canada.

Ley, Dorothy with van Bommel, Harry. (1994). The heart of hospice. Toronto: NC Press. Describes the founding principles of hospice care.

Manitoba Health. (undated ­ mid 1990s). Caring for the terminally ill person at home: An information booklet for caregivers. Winnipeg: Manitoba Health.

McDermott, Reena and Russell, Judy. (1995). Palliative care: A shared experience­A nursing perspective of symptom management. London: Parkwood Hospital Foundation.

Rhodes, Ann. (1994). The eldercare sourcebook. Toronto: Key Porter Books.

Rothstein, Jerry and Rothstein, Miriam. (1997). The caring community: A field book for hospice palliative care volunteer services. Burnaby, British Columbia: British Columbia Hospice Palliative Care Association.

Saint Elizabeth Health Care. (1988). Caring across cultures: Multicultural consideration in palliative care. Toronto: SEVNAO.

St. John Ambulance. (most recent edition). First aid. Toronto: The Priory of Canada of the Most Venerable Order of The Hospital of St. John of Jerusalem.

Saunders, Cicely. (1990). Hospice and palliative care. London: Edward Arnold. Written jointly by a team of experts in the field, this book offers good advice for setting up an interdisciplinary team on caring for the dying.

Saunders, Cicely. (1991). Hospice: The living idea. London: Edward Arnold. To help the health care professional understand how hospice care focuses on the quality of life left to the patient.

Saunders, Cicely and Baines, Mary. (1989). Living with dying: The management of terminal disease. Oxford University Press. A clinical examination of terminal illness.

Saunders, Cicely and Kastenbaum, Robert (Eds.). (1997). Hospice care on the international scene. New York: Springer Publishing.

Seibold, Cathy. (1992). The hospice movement: Easing death's pain. New York: Twayne Publishing.

Silverstone, Barbara and Hyman, Helen Kandel. (1989). You and your aging parent: A family guide to emotional, physical and financial problems. 3rd ed. New York: Pantheon Books.

Stoddard, Sandol. (1992). The hospice movement: A better way of caring for the dying. New York: Stein and Day. Thorough review of the hospice movement in the 1990s.

Taylor, Joan Leslie. (1989). In the light of dying: The journals of a hospice volunteer. New York: Continuum. A sensitive account of the loving relationships between hospice volunteers, patients and caregivers.

Tehan, Claire. (October 1985). "Has Success Spoiled Hospice?" Hastings Center Report, pp.10-13. Critical review of hospice movement.

Thompson, Wendy. (1987). Aging is a family affair: A guide to quality visiting, long-term care facilities and you. Toronto: NC Press.

van Bommel, Harry. (2002). Caring for loved ones at home. Scarborough, ON: Resources Supporting Family and Community Legacies Inc. Basic home nursing guide for family, friends and neighbors. Book available for free on the following Web site: www.legacies.ca

van Bommel, Harry. (1993). Choices for people who have a terminal illness, their families and their caregivers. Toronto: NC Press.

van Bommel, Harry. (1992). Dying for care: Hospice care and euthanasia. Toronto: NC Press. An examination of the need for more hospice care programs (informal and formal) before society spends much time, effort and resources on the euthanasia debate. Includes detailed quotes from Canadian hospice care leaders.

Victoria Hospice Society. (1995). Palliative care for home support workers. Victoria, British Columbia: Self-published.

Zimmerman, Jack McKay. (1986). Hospice: Complete care for the terminally ill. Baltimore: Urban and Schwarzenberg.



Pain and Symptom Control

Many of the books listed in the section for professionals have specific chapters on pain and symptom control. The following deal specifically with pain and symptom control plus a list of pharmaceutical texts.

Abrahm, Janet L. (2000). A physician's guide to pain and symptom management in cancer patients. Baltimore and London: John Hopkins University Press.

Angel, Jack E. (Publisher). (Use most recent edition). Physicians' desk reference. Oradell, N.J.: Medical Economics Company. Includes supplements. Standard physicians' text on all prescription drugs, their purpose and their side effects.

Autton, Norman. (1989). Pain­An exploration. London: Darton, Longman & Todd.

Bruera, Eduardo and Fainsinger, Robin L. (1995). Palliative care medicine: Patient-based training. Edmonton, Alberta: Division of Palliative Care Medicine, University of Alberta.

Canadian Pharmaceutical Association. (1992). About your medicines. Ottawa. Consumer's guide to drugs.

. Compendium of pharmaceuticals and specialties. Ottawa. Choose most recent edition for professional information on drugs.

Doyle, Derek. (1994). Domiciliary palliative care: A guide for the primary care team. London: Oxford University Press.

Expert Advisory Committee on the Management of Severe Chronic Pain in Cancer Patients. (1984, 1987). Cancer pain: A monograph on the management of cancer pain. Ottawa: Ministry of Supply and Services. Excellent summary of modern pain control techniques; distributed to all Canadian physicians.

Foley, Kathleen and Hendin, Herbert. (2002). The case against assisted suicide: For the right to end-of-life care. Baltimore: John Hopkins University Press. Both physicians have expertise in pain and symptom management and they look at the practical issues of legalizing assisted suicide using physicians as the providers of death.

Fordham, Moira and Dunn, Virginia. (1994). Along side the person in pain: Holistic care and nursing practice. London: Saunders College Publications.

Goldberg, Ivan K.; Kutscher, Austin H.; and Malitz, Sidney. (Eds.). (1986). Pain, anxiety and grief: Pharmacotherapeutic care of the dying patient and the bereaved. New York: Columbia University Press. Series of professional articles.

Hospital for Sick Children. (1997). Paediatric palliative and complex care manual. Toronto, ON: The Hospital for Sick Children and Care Plus.

Hull, Robin. (1995). A pocketbook of palliative care. Rosewell, Australia: McGraw Hill.

Hull, Robin; Ellis, Mary; and Sargent, Vicki. (1989). Teamwork in palliative care: A multidisciplinary approach to the care of patients with advanced cancer. Oxford, England: Radcliffe Medical Press.

Librach, S. Lawrence. (1997). The pain manual: Principles and issues in cancer pain management. Purdue Frederick. A short and concise pocket handbook published in association with the Canadian Cancer Society.

Long, Don M. (1997). Contemporary diagnosis and management of pain. Newtown, PA: Associates in Medical Marketing.

Saunders, Cicely M. (Ed.). (1978). The management of terminal disease. London: Edward Arnold. Gives specific drugs and doses for pain control plus other forms of symptom control including radiation, chemotherapy, surgery as well as the philosophy of palliative care.

Seamore, Linda, D. (1996). Symptom management algorithms for palliative care. Yakima: Washington.

Twycross, Robert and Lack, Sylvia A. (1990). Therapeutics in terminal care. New York: Churchill Livingstone. A highly practical, quick reference book for all those involved in the care of cancer patients.

Twycross, Robert. (1994). Pain relief in advanced cancer. New York: Churchill Livingstone.

Woodruff, Roger. (1999). Palliative medicine: Symptomatic and supportive care for patients with advanced cancer and AIDS. 3rd ed. Australia and New Zealand: Oxford University Press.

World Health Organization. (1996). Cancer pain relief. 2nd ed. Geneva: WHO. A summary of the best current information on cancer pain. Much of the information applies to other types of terminal-illness pain.



Legal and Moral Rights and Responsibilities

Annas, George J. (1981). The rights of hospital patients. New York: Avon Books. By the American Civil Liberties Union. This question-and-answer format book examines all areas of a patient's hospital rights.

Annas, George J, Glantz, Leonard H., and Katz, Barbara F. (1981). The rights of doctors, nurses, and allied health professionals. Cambridge, Mass.: Ballinger Publishing Company. American Civil Liberties Union's examination of caregivers' rights to practice, the caregiverpatient relationship and liability and income rights.

Cohen, Cynthia B. (Ed.). (1988). Casebook on the termination of life-sustaining treatment and the care of the dying. Bloomington, Indiana: Indiana University Press.

The Hastings Center. (1988). Guidelines on the termination of life-sustaining treatment and the care of the dying. Bloomington: Indiana University. A record of cases that highlight medical, ethical, legal, psychological dilemmas.

Kerr, Margaret and Kurtz, Joann. (1999). Facing a death in the family: Caring for someone through illness and dying, arranging the funeral, dealing with the will and estate. Toronto: John Wiley and Sons. A must-have book that explains the legal and financial issues related to death and dying in Canada.

Robertson, John A. (1983). The rights of the critically ill. New York: Bantam Books. American Civil Liberties Union book in a question-and-answer format.

Roy, David, Williams, John R., and Dickens, Bernard M. (1994). Bioethics in Canada. Scarborough, Ontario: Prentice Hall Canada. Standard text for the study of bioethics in Canada.

Rozovsky, Lorne Elkin. (1980). The Canadian patient's book of rights. Toronto: Doubleday Canada Limited. Patient rights in Canada with a list of provincial licensing authorities, medical associations, nursing associations and a bibliography.

Storch, J. (1982). Patients' rights: Ethical and legal issues in health care and nursing. Toronto: McGraw-Hill Ryerson. For health care professionals, this book reviews patients' rights, the ethics and law.



Grief and Bereavement

Many of the books listed in the general interest sections have specific chapters dealing with bereavement for adults and children plus the anticipatory grieving of patients. The following books deal more specifically with these concerns.

Buckman, Robert. (1988). Care of the dying child: A practical guide for those who help others. New York: Continuum. Deals with the care of the terminally ill child and family.

Buscaglia, Leo. (1983). The fall of Freddie the leaf. New York: Holt, Rinehart and Winston.

Caplan, Sandi and Lang, Gordon. (1993). Grief ­ the courageous journey: A step-by-step process for surviving the death of a loved one. London, Ontario: Cor Age Books.

Coburn, John. (1986). Anne and the sand dobbies. Ridgefield, CT: Morehouse/Barlow. A story to help parents and children face the unavoidable fact of death squarely.

Coryell, Deborah Morris. (1997). Good grief: Healing through the shadow of loss. Sante Fe, New Mexico: Shiva Foundation.

Doka, Kenneth J. (Ed.). (1996). Living with grief after sudden loss: Suicide, homicide, accident, heart attack, stroke. Washington, DC: Hospice Foundation of America. Collection of essays by leaders in the field of grief and bereavement.

Emswiler, M.A. and Emswiler, J.P. (2000). Guiding your child through grief. New York: Bantam Books.

Foehner, Charlotte and Cozart, Carol. (1988). The widow's handbook: A guide for living. Golden, CO: Fulcrum. A practical book full of basic information for a newly widowed individual.

Fassier, Joan. (1971). My grandpa died today. New York: Human Sciences Press. Picture book for children of all ages tells how a young boy adjusts to his grandfather's death.

Gatliffe, Eleanor D. (1988). Death in the classroom. Pembrooke Pines, FL: Tri Party Press. A resource book for teachers that offers realistic curriculum for death education.

Goodman, Michèle. (1991). Vanishing cookies. Toronto: The Benjamin Family Foundation. Suitable for junior grades.

Grollman, Earl. Has a series of books for patients, family members, children and professionals. Look for the most recent editions.

Hazen, B. (1985). Why did grandpa die? Racine, WI: Western Publishing Company.

Krementz, Jill. (1988). How it feels when a parent dies. New York: Knop. Eighteen children speak openly and honestly about their feelings when a parent dies.

Kushner, Harold S. (1981). When bad things happen to good people. New York: Avon Books. A distinguished clergyman's explanation of how God does not cause bad things but provides strength and courage to cope with difficult situations.

Levine, Stephen. (1989). Meetings at the edge: Dialogues with the grieving and the dying, the healing and the healed. New York: Anchor Press. Dialogues with emphasis on relief through meditation.

Lewis, C.S. (1966). A grief observed. London/Boston: Faber & Faber. A short, honest account of the author's experiences, emotional and spiritual, after the death of his wife. He argues against some of the conventional thoughts and behaviors of the time.

Martin, John D. and Ferris, Frank D. (1992). I can't stop crying: It's so hard when someone you love dies. Toronto: Key Porter Books.

O'Toole, Donna. (1989). Aarvy Aardvark Finds Hope. Rainbow, NC: Mountain Rainbow. A book for children to learn about the grief process. Used extensively in workshops and schools.

O'Toole, Donna and Cory, Jerre. (1998). Helping children grieve and grow. A guide for those who care. Burnsview, North Carolina: Compassion Press. Examines grieving for children of various ages and methods that can help them.

Panton, Elizabeth and Allen, Louise. (1986). Where's Linda?: A journal of grief. Windsor, Ontario: Canadian Mental Health Association, Windsor-Essex County Branch.

Parkes, Colin Murray. (1987). Bereavement: Studies of grief in adult life. London: Tavistock and Pelican. A classic work in studying grief.

Parkes, Colin Murray with Laungani, Pittu and Young, Bill (Eds.). (1996). Death and bereavement across cultures. London: Routledge.

Parkes, Colin Murray, Stevenson-Hinde, Joan, and Maris, Peter (Eds.). (1993). Attachment across the life cycle. London: Routledge.

Rando, Therese A. (1984). Grief, dying and death: Clinical intervention for caregivers. Champaign, IL: Research Press. A clinically oriented examination of grief and loss for the professional caregiver, focusing on practical applications for caregiving.

Rando, Therese A. (1995). Grieving: How to go on when someone you love dies. New York: Lexington Books.

Rando, Therese A. (1986). Loss and anticipatory grief. New York: Free Press. This book helps those who work with the dying and bereaved to understand the many forms of anticipatory grief and use the forewarning of loss in a positive and creative way.

Rando, Therese, A. (1986). Parental loss of a child. New York: Research Press. An in-depth study of the unique needs of parents suffering from the loss of a child.

Rando, Therese, A. (1993). Treatment of complicated mourning. New York: Research Press.

Romond, Janis Loomis. (1989). Children facing grief: Letters from bereaved brothers and sisters. Saint Meinrad, IN: Abbey Press. A book for bereaved families, a tool to open communication between children and parents.

Rosen, Helen. (1986). Unspoken grief. New York: Free Press. A study of the effect of sibling death on a child and their family.

Sandford, Doris. (1985). It must hurt a lot. Portland, OR: Multnomah Press. For children between the ages of 5 and 11. A touching story about a boy whose puppy is killed by a car.

Schneiderman, Gerald. (1985). Coping with death in the family. Toronto: NC Press. Reviews death of an infant, child, adolescence, a parent's death, a grandparent's death and your own death.

Silverman, Phyllis and Campbell, Scott. (1987). Widower: When men are left alone. New York: Baywood. True stories of men left alone and how they coped.

Viorst, Judith. (1986). Necessary losses: The loves, illusions, dependencies and impossible expectations that all of us have to give up in order to grow. New York: Fawcett.

Worden, William J. (1991). Grief counseling and grief therapy. New York: Springer Publishing Company, Inc. A professional reference for counselors and therapists and often used as a starting reference for professionals.

Worden, J. William, and William Proctor. (1976). PDA (Personal Death Awareness): Breaking free of fear to live a better life now. Englewood Cliffs, N.J.: PrenticeHall. Research Director of Harvard's Omega Project looks at terminal illness and suicide and how to rid yourself of the fear of death.

Wylie, Betty Jane and Webb, Jonathan (Ed.). (1997). Beginnings: A book for widows. Toronto: McClelland & Stewart. A book for widows written by a Canadian author with Canadian references.



Personal Stories

Albom, M. (1997). Tuesdays with Morrie: An old man, a young man, and life's greatest lesson. New York: Doubleday.

Bonisteel, Roy. In search of man alive. (1980). Toronto: A Totem Book. Interviews with celebrities including Mother Theresa, Elisabeth KüblerRoss, and Elie Wiesel.

Brady, Mari. (1977). Please remember me: A young woman's story of her friendship with an unforgettable 15-year-old boy. New York: Doubleday and Company. Brady was a recreational aid who worked with young cancer patients.

Caine, Lynn. (1975). Widow. New York: Bantam Books. Her examination of how she grieved her husband's loss, her anger at his death and how she coped.

Callwood, June. (1990). Jim: A life with AIDS. Toronto: Lester & Orpen Dennys. Jim's story will inform and enlighten everyone who wants to better understand AIDS.

Callwood, June. (1986). Twelve weeks of spring. Toronto: Lester & Orpen Dennys. The story of Margaret Frazer's life ending in vitality and love, a triumphant experiment in palliative care.

Cameron, Jean. (1982). For all that has been: Time to live and time to die. New York: Macmillan. Book by a hospital social worker with terminal cancer who describes her work on a palliative care unit, her struggle with cancer that keeps growing and bereavement concerns. She lives the Viktor Frankl observation that our last human freedom is our ability to choose our response to whatever the circumstances.

Cousins, Norman. (1979). Anatomy of an illness as perceived by the patient. Toronto: Bantam Books. How this magazine editor overcame a terminal illness using common sense, laughter, information and taking personal control over his health.

Craven, Margaret. (1975). I heard the owl call my name. Toronto: A Totem Book. Story of a young Anglican priest sent to an Indian Village in British Columbia. He doesn't know he is terminally ill yet learns "enough of life to be ready to die."

duBoulay, Shirley. (1984). Cicely Saunders: Founder of the modern hospice movement. London: Hodder and Stoughton.

Elmer, Lon. (1990). Why her, why now: A man's journey through love and death and grief. New York: Bantam.

Fynn. (1972). Mister God this is Anna. London: Collins. Story of a girl genius and her adventures and discoveries before her death.

Kennedy, Betty. (1976). Gerhard: A love story. Toronto: Macmillan of Canada Limited. A journalist/broadcaster's sensitive story of her husband's last year and how they dealt with his dying.

Kramer, Herbert and Kay. (1993). Conversations at midnight: Coming to terms with dying and death. New York: William Morrow.

Liss, Robert E. (1980). Fading rainbow: A reporter's last story. New York: Methuen. Reporter, father of 3, 33 years old with leukemia and his description of symptoms, tests, doctors, hospitals, drugs, pain and other patients. Wife completed the book after his death.

Lund, Doris. (1974) Eric. New York: Dell Publishing. A mother's account of her son's last years of fighting cancer.

Meryman, Richard. (1980). Hope: A loss survived. Boston: Little, Brown and Company. Writer helps his wife die at home and how the family (two girls) survived the loss.

Mucciolo, Louis. (1992). Eighty Something: Interviews with octogenarians who stay involved. New York: Carol Publishing.

Pond, Jean. (1979). Surviving. New York: Ace Books. Well known network TV newscaster who reviews her triumph over a brain tumor but describes the process from a patient's point of view in a modern urban hospital.

Pope, Robert. (1991). Illness and healing: Images of cancer. Hantsport, Nova Scotia: Lancelot Press. Book of powerful and moving paintings and sketches by the Nova Scotian artist as he experiences the diagnosis and treatment of his cancer.

Radner, Gilda. (1989). It's always something. New York: Simon and Schuster.

Rollin, Betty. (1977). First you cry. New York: Signet. TV broadcaster who faced death when she had breast cancer and how she coped with her first of two mastectomies.

Rosenfeld, Stephen S. (1977). The time of their dying. New York: W. W. Norton and Company. Editorial writer and columnist who helps both his parents die within months of each other.

Sarton, May. (1981). A reckoning. New York: W.W. Norton and Company. A fictional account of a dying woman's examination of her life and relationships with family and friends.

Scrivener, Leslie. (1981). Terry Fox: His story. Toronto: McClelland and Stewart Limited. Based on Fox's daily journal, this is the story of his run across Canada to raise funds for cancer and how the run was cut short when his cancer returned.

Stewart, Fred Mustard. (1976). Six weeks. New York: Bantam Books. Story of a girl, her mother and the new man in their lives and how they cope with the girl's last six weeks of life.

Upson, Norma S. (1986). When someone you love is dying: Sensitive, timely advice on providing primary care for a terminally ill loved one...from a woman who faced this challenge herself. New York: Simon and Schuster.

Weingarten, Violet. (1977). Intimations of mortality. New York: Alfred A. Knopf. Journal of a writer's two-year battle with cancer.

Weinman-Lear, Martha. (1980). Heartsounds. New York: Pocket Books. A journalist's story of her urologist husband's loosing battle with degenerative heart disease. It describes a surgeon's frustration and anger at being treated like a child by the medical profession and how he recognizes he might have done the same with his patients. His wife describes what it is like to help a spouse die.



Long-Term Care

Adams, Martha O. (1987). Alzheimer's disease: A call to courage for caregivers. Saint Meinrad, IN: Abbey Press. Written from personal experience, the author emphasizes the practical care of the Alzheimer's patient.

Bayly, Rich and Larue, Gerald A. (1992). Long-term care in an aging society: Choices and challenges for the 90s. New York: Prometheus Books.

Carter, Barbara H. (2001). Where will they live? A guide to help you help your parents with their housing decisions. Toronto: Stoddart. A guide to help adult children answer the housing questions of their aging parents.

Cleveland, Martha. (1989). Living well: A twelve-step response to chronic illness and disability. New York: Harper-Collins. Wisdom for millions who suffer from the distress and pain of chronic illness and disability.

Fabiano, Len. (1991). Mother I'm doing the best I can: The families of aging parents during times of loss and crisis. Seagrave, Ontario: FCS Publications.

Fabiano, Len. (1989). Working with the frail elderly: Beyond the physical disability. Seagrave, Ontario: FCS Publications.

Mace, Nancy and Rabins, Peter. (1991). The 36-hour day: A family guide to caring for persons with Alzheimer's disease, related dementing illness and memory loss in later life. Baltimore, MD: John Hopkins. A family guide to caring for persons with Alzheimer's Disease, dementia and memory loss in later life.

Maurer, Janet. R. and Strasberg, Patricia D. (1990). Building a new dream: A family guide to coping with chronic illness and disability. Redding, MA: Addison Wesley. A guide for patients, family and friends of people facing chronic illness. It provides practical and wise advice on coping with a changed life.

Miller, James E. (1996). The caregiver's book: Caring for another, caring for yourself. Minneapolis: Augsburg Fortress.

Miller, Judith F. (1992). Coping with chronic illness: Overcoming powerlessness. New York: Davis. A book offered as a resource for caregivers and patients to help combat the sense of helplessness in chronic illness.

Mindszenthy, Bart and Gordon, Michael. (2002). Parenting your parents: Support strategies for meeting the challenge of aging in the family. Toronto: Dundurn Press.

Portnow, Jay with Houtmann, Martha. (1987). Home care for the elderly. New York: Pocket Books.

Rhodes, Ann. (1993). The eldercare sourcebook. Toronto: Key Porter Books.

Rhodes, Ann. (1997). Take care: A practical guide for helping elders. Toronto: Harper Collins Publishers.

Rhodes, Linda. (2005). Caregiving as your parents age. Toronto: Signet (Penguin Canada).

Schachter-Shalomi, Zalman and Miller, S. (1995). From age-ing to sage-ing: A profound vision of growing older. New York: Warner Books.

Schwartzentruber, Michael. (1988). From crisis to new creation. Winfield, BC: Wood Lake. A terminally ill young man with cystic fibrosis probes "all that I would like to be", with hope, sensitivity and courage.

Tapp-McDougall, Caroleine. (2004). Complete Canadian Edlercare Guide. Toronto: Wiley Canada.



Books on Death

Aries, Philippe with translation by Helen Weaver. (1991). The Hour of our death. London: Oxford University Press. A long-term study into western man's changing attitude toward death from earliest Christian times to the present.

Aries, Philippe with translation by Helen Weaver. (1975). Western attitudes toward death: From the Middle Ages to the present. Baltimore: John Hopkins University Press. Various views of western man's own mortality as seen through fine art, history, literature and religion.

Currie, Ian. (1993). You cannot die. New York: Somerville House. Examines evidence of an afterlife through apparitions, hauntings, out-of-body-experiences, deathbed visions, resuscitation experiences and reincarnation.

Levine, Stephen. (1989). Who dies? An investigation of conscious living and conscious dying. New York: Anchor Press. Examines evidence of reincarnation.

Moody, Raymond A., Jr. (1988). Life after life: the investigation of a phenomenon, survival of bodily death. New York: Bantam. Based on interviews with people who were 'dead' but revived, Moody examines 15 points that bind all these peoples' experiences together.

. (1988). Reflections on life after life. Harrisburg, P.A.: Stackpole Books. Further interviews and conclusions on lifeafterdeath issues.



The World Wide Web (Internet)

The following Internet links may be helpful for people interested in more information about hospice/palliative and home care. I have picked just a few sites that have excellent resources and extensive links to other related sites. These organizations deserve a lot of credit for the effort they have put into their Web sites.

A note of caution: There are thousands of Web sites offering health care information. The information on some sites may not be accurate or current. Check to see who produces the Web site, their qualifications and their credibility before assuming their information is correct.

Also, when checking the Web or other sources, for health care information, expect to find information that might be unsettling. The information may tell you things you didn't expect or didn't want to know and it may have been written for a professional audience rather than for patients and families.

For general health information, a good starting point is www.sympatico.ca From the Home Page, click on 'Health' to reach a large directory of further links on all aspects of health as well as links to specific hospitals, research centers and more. Also, the federal government's Health Canada site has an extensive resource base at www.hc-sc.gc.ca with links to other sites.

The Association for Death Education and Counseling www.adec.org and the King's College Centre for Education about Death and Bereavement www.deathed.ca are useful sites for those interested in teaching or learning more about death, dying and bereavement.

The Institute of Palliative Care in Ottawa has an extensive links section to organizations around the country and globe www.pallcare.org/links.htm Their whole site is worth a visit.

The National Hospice Palliative Care Organization in the U.S. www.nhpco.org provides many links to hospice programs throughout America and other organizations.

Hospice Association of Ontario Lifeline (Toronto) has many sources and links at www.hospicelifeline.com

The World Health Organization is another extensive site for health related information http://www.who.int/

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