Nursing Homes, Hospices, and End-of-Life Resources

Resources for Nursing Homes, Hospices, & End-of-Life Issues
Ken Pope

The following resources are intended to help individuals, families, and friends in their search for information, services, and facilities.
The material below includes searchable online databases, 24-hour helplines, books, and articles. They are meant to be of help to those who may need nursing homes, home health care, paliative care, hospices, assisted living, continuing care, geriatric care managers, living wills, advanced directives, hospital visitation authorization for unmarried partners, web connections with other family caregivers, and so on.
There are 5 groups of resources below: (a) online resources, (b) books, (c) hospice articles & chapters, (d) nursing home articles & chapters, and (e) end-of-life articles & chapters.
One of the other pages of this web site that provides relevant resources provides links for searching for free or low-cost medications and for searching for health insurance.
One of my other web sites focuses on disability & accessibily resources for psychology training & practice.
I hope you find these resources helpful.

Online Resources
AARP Guide To Medicare Coverage for Getting Care in a Hospital, Nursing Home, at Home and with Hospice: "Medicare Part A helps pay for inpatient care in hospitals and skilled nursing facilities. It also helps cover hospice care and some home health care. You must meet certain conditions to get these benefits. Medicare does not pay all of these costs. You, or separate insurance, must pay some of these costs, too."
Alzheimer's Association: Resources include 24-hour helpline, senior housing finder, carefinder, & library services.
Assisted Living INFO: "online guide for selecting an assisted living facility, retirement community, or other personal care facility anywhere in the United States. Our site is designed to assist you throughout the selection process. We offer tools to help you evaluate a senior's needs, facility selection tips, and our highly-acclaimed, map-based search engine to find a facility near family and friends."
Buddhist Hospice Directory: Listing, descriptions, & links to Buddhist organizations offering hospice and palliative care services.
Canadian Hospice Palliative Care Association: Information and services including an "on-line directory...designed to provide you with information on the availability of hospice palliative care services across Canada. Here you will find a listing of programs and services, their contact information, the population they serve, and where they provide care."
Cancer Care: "CancerCare is a national nonprofit organization that provides free, professional support services to anyone affected by cancer: people with cancer, caregivers, children, loved ones, and the bereaved. CancerCare programs – including counseling, education, financial assistance and practical help – are provided by trained oncology social workers and are completely free of charge."
Caregiver: information for family & professional caregivers; includes online listings for each state's Support Groups, Non-Profit Resources, Financial Aid. & Rural Caregiver Resources.
CaringBridge: "Free, personalized web sites that support and connect loved ones during critical illness.... A CaringBridge website helps keep loved ones informed during difficult times. In return, family and friends give patient and caregiver support through guestbook messages. Every free, personalized CaringBridge website includes: patient care journal to update family and friends; guestbook for messages of love; photo gallery; & free online support for using the service."
Caring Connections: online resources include "a state-specific living will or healthcare power of attorney"
Children's Hospice International: Directory: searchable online "worldwide database of programs caring for children with life-threatening conditions and their families"
Compassion and Choices: resources include forms for living will and advance directive (for each state) and hospital visitation authorization form for unmarried partners.
Consumer Reports: "The Deficient Dozen: Homes Noted for Poor Care on All Five of Our Lists": "The following nursing facilities have appeared on all four of our Nursing Home Watch Lists published between 2000 and 2005 as well as on the list of homes to avoid in the current Consumer Reports Nursing Home Quality Monitor."
Consumer Reports: "Form 2567: How to read this very important document": "When scouting nursing homes for a family member or another person, one of the best things you can do is get and read each home's Form 2567. It's the state inspection report for the facility, frequently called the state survey, and by law it must be 'readily accessible' to residents and visitors... Regular surveys are conducted every 12 to 15 months by state inspectors on behalf of the federal Centers for Medicare & Medicaid Services."
Consumer Reports: Nursing homes: Business as usual": "Two decades after the passage of a federal law to clean up the nation’s nursing homes, bad care persists and good homes are still hard to find. Two decades after the passage of a federal law to clean up the nation’s nursing homes, bad care persists and good homes are still hard to find."
A Dying Person's Guide to Dying by Roger Bone, M.D.: "By thinking ahead about what could happen - and about how you will deal with problems if they do happen, you can create a better life and a better quality of life for yourself and for the people who love and care about you. What I have to say is for the person who, like myself, is dying. We, too, need to plan - to think ahead in order to fashion, out of the time remaining, the best of what is possible. As I am dying from cancer..."
Family Caregiver Alliance: "information on care strategies, stress relief, community resources, family issues and hands-on care. Be sure to also visit our Fact Sheet section for a comprehensive collection of family-friendly publications filled with practical information. For more personal assistance, click on 'Ask FCA'. And don’t miss our online Discussion Groups, to keep you connected, 24 hours a day, with other caregivers."
Gilbert Guide: Allows online searching for facilities & services including: (a) assisted living, (b) homecare, (c) continuing care (CCRC), (d) nursing homes, (e) home health care, (f) geriatric care managers, (g) adult day services, and (h) hospices.
Homecare Directory: online searchable database for home care, hospice care, & geriatric care managers. "the most comprehensive site on the web for finding Home Care, Home Health Care and Hospice Care providers throughout the United States and Canada. We have simplified your search for Homecare, and Hospice Care providers by only listing the most qualified providers within North America. All Home Health Care providers on TheHomeCareDirectory.com are fully licensed, bonded, and insured."
Hospice Directory: online searchable database of hospices in Canada and the United States.
International Association for Hospice & Palliative Care: Directory: provides online searching of worldwide directory of hospices & sources of palliative care.
Mayo Clinic: Anticipating end-of-life needs of people with Alzheimer's disease: "The challenges of Alzheimer's disease multiply as the end of life approaches. Here are some ways to prepare for the tough choices ahead."
National Cancer Institute: End-of-Life Care: questions and answers - "The following information can help answer some of the questions that many patients, their family members, and caregivers have about the end of life."
National Hospice & Palliative Care Organization: Find a Provider: Allows online searches by city, name, specialization, etc.
National Institute for Jewish Hospice: "A 24 hour toll-free number counsels families, patients and care-givers, and provides locations of hospices, hospitals, health professionals and clergy of all faiths."
Nursing Home Directory: "free online guide for finding nursing homes and assisted living facilities nationwide."
Nursing Home INFO: Allows online searching for nursing homes by city, county, state, name, management, or special needs.
Palliative Care Directory of Hospitals: searchable online database "to help you or a loved one locate a hospital in your area that provides a palliative care program. The directory is based upon palliative care programs listed in the 2007 American Hospital Association (AHA) Annual Survey."
Palliative Dementia Care Resources: "We are dedicated to providing access to appropriate online resources for family and professional caregivers. In order to be responsive to the needs of caregivers in managing life's changes, preparing for life's end, and coping with grief and loss, our content is focused on those topics that are often most pressing."
Perinatal hospice/palliative care programs and support: online listing and links to hospitals with perinatal hospice/palliative care programs. "As prenatal testing becomes increasingly routine, more parents are learning devastating news before their babies are born. In too many places, the ability to diagnose has raced ahead of the ability to care for these families and their babies. But in a beautiful and practical response, some pioneering hospitals and hospices are starting perinatal hospice or perinatal palliative care programs for families who wish to continue their pregnancies with babies who likely will die before or shortly after birth. A perinatal hospice approach walks with these families on their journey through pregnancy, birth and death, honoring the baby as well as the baby's family. Even in areas without a formal program, parents can create a loving experience for themselves and their baby, and health professionals and family and friends can offer support in the spirit of hospice (see our resources pages)."
U.S. Department of Health & Human Services: Centers for Medicare & Medicaid Services: comprehensive government web site for medicare & medicaid coverage.
U.S. Department of Health & Human Services: Eldercare Locator: "links those who need assistance with state and local area agencies on aging and community-based organizations that serve older adults and their caregivers."
U.S. Health & Human Services Nursing Home Comparison Site: "The primary purpose of this tool is to provide detailed information about the past performance of every Medicare and Medicaid certified nursing home in the country." The site allows you to search by geography (i.e. all homes within a state or county), proximity (within a certain distance of a town or zip code), or name.
Veterans Aid & Attendance Pension Benefit: Guide to using veterans' pension benefit for home care, assisted living, nursing home, etc.
Veterans Coalition Senior Veterans Initiative: provides support to veterans and their families in regard to understanding and applying for disability, long-term care, assisted living, skilled nursing, and homebound care.

Books
Ahead of Your Time: A Complete Guide for End-of-Life Planning. Dick Coffin & Sue Coffin. Ahead Of Your Time Publishers, 2007.
American Medical Association Guide to Home Caregiving. American Medical Association. AMA, 2001.
Baby Boomer's Guide to Nursing Home Care. Eric M. Carlson & Katharine Bau Hsiao. Taylor, 2006.
Caregiving: Hospice-Proven Techniques for Healing Body and Soul. Douglas C. Smith. Wiley, 1997.
Caring for Your Parents by Hugh Delehanty and Elinor Ginzler. AARP, Sterling Publishing Co., Inc., New York, 2005.
Christian Caregiving: A Way of Life. Kenneth C. Haugk. Augsburg Publishing House. 1984.
The Comfort of Home: A Complete Guide for Caregivers. Maria M. Meyer & Paula Derr. CareTrust Publications, 2007.
Complete Eldercare Planner, 2nd Edition. Joy Loverde. Three Rivers Press, 2000.
Communicating at the end of life: Finding magic in the mundane. E. Foster. Lawrence Erlbaum Associates Publishers, 2007.
Dying at home: a family guide for caregiving. A. Sankar. Johns Hopkins University Press, 1999.
Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent. Barry Jacobs. Guilford Press, 2006.
End-of-Life Advisor: Personal, Legal, and Medical Considerations for a Peaceful, Dignified Death. Susan Dolan & Audrey R. Vizzard. Kaplan Publishing, 2008.
End-of-Life Handbook: A Compassionate Guide to Connecting with and Caring for a Dying Loved One. David B. Feldman, Stephen Andrew Lasher Jr., & Ira Byock. New Harbinger, 2008.
Everything You Need to Know About Nursing Homes: The Family's Comprehensive Guide to Either Working with the Institution or Finding Care Alternatives. Charlotte Digregorio. Civetta Press, 2005.
Family Hospice Care: Pre-Planning and Care Guide. Harry van Bommel. Media Futures Institute, 2006.
A Final Farewell: Your Personal Guide to End of Life Issues. Nancy Lawson. Legacy, 2002.
Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying. Maggie Callanan & Patricia Kelley. Bantom, 1997.
Guide to Caregiving in the Final Months of Life. Betsy Murphy & Linda Roberts. T. M. Brown Publishers, 2007.
Hospice Care for Children (2nd ed.). A. Armstrong-Dailey & S. Zarbock. Oxford University Press, 2001.
Hospice Care at Home: A Guide to Caring for Your Dying Loved One at Home. Starr Calo-oy & Bob Calo-oy. Orchard Publications, 2006.
The Hospice Choice: In Pursuit of a Peaceful Death. by Marcia Lattanzi-Licht, Galen W. Miller, & John J. Mahoney. Fireside, 1998.
Hospice Handbook: A Complete Guide. Larry Beresford & Elisabeth Kubler-Ross. Little, Brown, 1993.
Hospice and Palliative Care: Concepts and Practice, Second Edition. Denice C. Sheehan. Jones and Bartlett, Publishers, 2003.
How to Find Great Senior Housing: A Roadmap for Elders and Those Who Love Them, 2nd Edition. Phyllis Staff. The Best Is Yet.Net Press, 2004.
Infection Control In Home Care and Hospice, 2nd Edition. Emily Rhinehart & Mary McGoldrick Friedman. Jones & Bartlett, 2005.
Insider's Guide to Better Nursing Home Care: 75 Tips You Should Know. Donna M. Reed. Promethius, 2008.
Journey through the Dying Process: Caring for a Loved one at the End of Life. Fairview Health Services. Fairview Press, 2003.
Let Me Decide: What You Need to Know Now about End-Of-Life Care. William Molloy. Penguin Books Canada, 2005.
Living Well in a Nursing Home: Everything You & Your Folks Need to Know. Lynn Dickinson, Xenia Vosen, & Severine Biedermann. Hunter House, 2005.
Needs of the Dying: A Guide for Bringing Hope, Comfort, and Love to Life's Final Chapter. David Kessler. Harper, 2007.
Notes from the Waiting Room: Managing a Loved One's End-of-Life-Hospitalization (includes Choosing End-of-Life Care Without Hospitalization). Bart Windrum. Axiom Action, 2008.
Nursing Homes: The Family's Journey. Peter S. Silin. Johns Hopkins University Press, 2001.
On Death and Dying: What the Dying Have to Teach their Doctors, Nurses, Clergy, and their Own Families. Elisabeth Kubler-Ross. Scribner, 1969.
Peaceful Dying: The Step-by-step Guide To Preserving Your Dignity, Your Choice, And Your Inner Peace At The End Of Life. Daniel R. Tobin, With & Karen Lindsey. Da Capo Press, 1968.
Peaceful Journey: A Hospice Chaplain's Guide to End-of-Life. Matthew P. Binkewicz. Paramount Market Publishing, 2005.
Raising Moms. Rhonda H. Kelley. New Hope Publishers, 2006.
The Senior's Guide to End-of-Life Issues: Advance Directives, Wills, Funerals & Cremations. Rebecca Sharp Colmer & Todd M. Thomas. Eklektika Press, 2006.
Staying in Charge: Practical Plans for the End of Your Life. Karen Orloff Kaplan & Christopher Lukas. Wiley, 2004.
Transitions in Dying and Bereavement: A Psychosocial Guide for Hospice and Palliative Care. Moira Cairns, Marney Thompson, Wendy Wainwright, & Victoria Hospice Society. Health Professions Press, 2003. When Someone You Love Needs Nursing Home Care: The Complete Guide. Robert F. Bornstein, Mary A., Ph.D. Languirand, & Robert Bornstein. Newmarket Press, 2001.

Hospice Articles & Chapters
Abdel-Karim, I. A., Sammel, R. B., & Prange, M. A. (2007). Causes of death at autopsy in an inpatient hospice program. Journal of Palliative Medicine, 10(4), 894-898.
Ackson, A., Hodson, M., Brady, D., & Pahl, N. (2007). Spreading the word...Hospice Information systems. Omega: Journal of Death and Dying, 56(1), 47-62.
Adamle, K. N., & Ludwick, R. (2005). Humor in hospice care: Who, where, and how much? American Journal of Hospice & Palliative Medicine, 22(4), 287-290.
Adunsky, A., Aminoff, B. Z., Arad, M., & Bercovitch, M. (2008). Mini-Suffering State Examination: Suffering and survival of end-of-life cancer patients in a hospice setting. American Journal of Hospice & Palliative Medicine, 24(6), 493-498.
Andruccioli, J., Montesi, A., Raffaeli, W., Monterubbianesi, M. C., Turci, P., Pittureri, C., et al. (2007). Illness awareness of patients in hospice: Psychological evaluation and perception of family members and medical staff. Journal of Palliative Medicine, 10(3), 741-748.
Arber, A. (2007). "Pain talk" in hospice and palliative care team meetings: An ethnography. International Journal of Nursing Studies, 44(6), 916-926.
Ardelt, M., & Koenig, C. S. (2006). The Role of Religion for Hospice Patients and Relatively Healthy Older Adults. Research on Aging, 28(2), 184-215.
Armstrong-Dailey, A., & Zarbock, S. (2001). Hospice care for children (2nd ed.): Oxford University Press: New York.
Azoulay, D., Hammerman-Rozenberg, R., Cialic, R., Ein Mor, E., Jacobs, J. M., & Stessman, J. (2008). Increasing opioid therapy and survival in a hospice. J Am Geriatr Soc, 56(2), 360-361.
Bain, K. T., & Weschules, D. J. (2007). Medication inappropriateness for older adults receiving hospice care: a pilot survey. Consult Pharm, 22(11), 926-934.
Blaschko, S. (2007). Hospice. Families, Systems, & Health, 25(1), 133.
Brown, W. (2008). Opioid use in dying patients in hospice and hospital, with and without specialist palliative care team involvement. European Journal of Cancer Care, 17(1), 65-71.
Bruce, A., & Davies, B. (2005). Mindfulness in Hospice Care: Practicing Meditation-in-Action. Qualitative Health Research, 15(10), 1329-1344.
Carlson, B., Simopolous, N., Goy, E. R., Jackson, A., & Ganzini, L. (2005). Oregon Hospice Chaplains' Experiences with Patients Requesting Physician-Assisted Suicide. Journal of Palliative Medicine, 8(6), 1160-1166.
Carlson, M. D. A., Morrison, R. S., Holford, T. R., & Bradley, E. H. (2007). Hospice care: What services do patients and their families receive? Health Services Research, 42(4), 1672-1690.
Casarett, D., Crowley, R., Stevenson, C., Xie, S., & Teno, J. (2005). Making Difficult Decisions About Hospice Enrollment: What Do Patients and Families Want to Know? Journal of the American Geriatrics Society, 53(2), 249-254.
Catt, S., Blanchard, M., Addington-Hall, J., Zis, M., Blizard, R., & King, M. (2005). Older adults' attitudes to death, palliative treatment and hospice care. Palliative Medicine, 19(5), 402-410.
Cherney, C. L. (2008). Determining hospice benefit for patients with dementia. JAMA: Journal of the American Medical Association, 299(15), 1774.
Connor, S. R. Development of hospice and palliative care in the United States. Omega (Westport), 56(1), 89-99.
Connor, S. R. (2007). Development of hospice and palliative care in the United States. Omega: Journal of Death and Dying, 56(1), 89-99.
Connor, S. R., Lycan, J., Schumacher, J. D., Werth Jr, J. L., & Blevins, D. (2006). Involvement of Psychologists in Psychosocial Aspects of Hospice and End-of-Life Care. In Psychosocial issues near the end of life: A resource for professional care providers. (pp. 203-217): American Psychological Association: Washington.
Connor, S. R., Pyenson, B., Fitch, K., Spence, C., & Iwasaki, K. (2007). Comparing Hospice and Nonhospice Patient Survival Among Patients Who Die Within a Three-Year Window. Journal of Pain and Symptom Management, 33(3), 238-246.
Corr, C. A. (2007). Hospice: Achievements, legacies, and challenges. Omega: Journal of Death and Dying, 56(1), 111-120.
Csikai, E. L. (2006). Bereaved hospice caregivers' perceptions of the end-of-life care communication process and the involvement of health care professionals. Journal of Palliative Medicine, 9(6), 1300-1309.
Davies, B., Collins, J., Steele, R., Cook, K., Distler, V., & Brenner, A. (2007). Parents' and children's perspectives of a children's hospice bereavement program. Journal of Palliative Care, 23(1), 14-23.
Davies, B., Collins, J. B., Steele, R., Cook, K., Brenner, A., & Smith, S. (2005). Children's Perspectives of a Pediatric Hospice Program. Journal of Palliative Care, 21(4), 252-261
De Lima, L., & Doyle, D. (2007). The International Association for Hospice and Palliative Care list of essential medicines for palliative care. Journal of Pain & Palliative Care Pharmacotherapy, 21(3), 29-36.
DePalma, J. A. (2005). Evidence-Based Decision Making for Administrators: Hospice Program Example. Home Health Care Management & Practice, 17(6), 483-484.
Doberman, D. J., Yasar, S., & Durso, S. C. (2007). Would you refer this patient to ho0