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

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Resources for Those Looking for Nursing Homes, Hospices, In-Home Hospices, Living Wills, Advance Directives, etc., Or Who Are Facing End-of-Life Challenges

Kenneth S. Pope, Ph.D., ABPP

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I gathered the following resources—which include searchable online databases, 24-hour helplines, and books—to help individuals and families in their search for information, services, and facilities.

I hope these resources will be helpful to those who may need nursing homes, home health care, palliative 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.

These resources include 25 online resources and 28 books

Online Resources

Alzheimer's Association: Resources include 24-hour helpline, senior housing finder, care-finder, & library services.

A Place for Mom: Assisted Living—Memory Care—Independent Living—Nursing home—Care Homes

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."

Canadian Virtual Hospice: Information and support for those facing end-of-life issues, for their families and loved ones, for their caregivers, and for professionals.  Includes a variety of online discussion groups (e.g., "I am living with a serious illness"; "I care about someone" for connecting with other caregivers; "I am living with loss and grief"), "Ask a professional," and other resources.

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.

Caregiver Resources: web sites, books, chapters, and articles to provide information, support, and other resources for caregivers and their clinicians.

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"

Compassion and Choices (formerly The Hemlock Society): "Compassion & Choices is committed to empowering people to get the care they want during a serious illness or at the end of life. One way we do that is by helping people plan well and become good advocates for themselves and their loved ones. End-of-Life Decisions Guide & Toolkit. Download our thorough end-of-life planning guide and toolkit to help you navigate your end-of-life choices"

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."

Final Exit Network (formerly The Hemlock Society): "Our Mission: Educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence, and defend their right to choose."

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.

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: "Whether you are looking for a short rehabilitation stay or long-term residence, this website is designed to help you gather information about U.S. Nursing and Rehab Centers."

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."

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: "Nursing Home Compare has detailed information about every Medicare-certified nursing home in the country."

Veterans Aid & Attendance Pension Benefit: Guide to using veterans' pension benefit for home care, assisted living, nursing home, etc.


Books


After Diagnosis: Family Caregiving With Hospice Patients. John Bruhn.   Springer, 2016.

Being Mortal: Medicine and What Matters in the End. Atul Gawande. Metropolitan, 2014.

Care of the Imminently Dying edited by Judith Paice, Oxford University Press, 2016.

Death, Dying, and Bereavement: Contemporary Perspectives, Institutions, and Practices. Judith Stillion & Thomas Attig. Springer, 2015.

Decision making near the end-of-life: Issues, developments, and future directions. James L. Werth & Dean Blevins (Eds.) Routledge/Taylor & Francis Group, 2009.

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 Care and Addiction: A Family Systems Approach. S. Y. Bushfield & B. DeFord. Springer, 2010.

End-of-Life Care for Children and Adults With Intellectual and Developmental Disabilities. Sandra Friedman & David Helm. American Association on Intellectual and Developmental Disabilities, 2010.

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.

End-of-Life Issues, Grief, and Bereavement: What Clinicians Need to Know. S. H. Qualls & J. E. Kasi-Godley (Eds.). John Wiley, 2011.

Final Journeys: A Practical Guide for Bringing Care and Comfort at the End of Life. Maggie Callanan. Bantam, 2009.

Finishing our story: Preparing for the end of life. G. L. Eastwood. Oxford University Press, 2019.

Freedom To Choose: How To Make End-of-Life Decisions on Your Own. George Burnell. Baywood, 2008.

Guide to Psychosocial and Spiritual Care at the End of Life by Henry S. Perkins. Springer Science, 2017.

Helping Professional's Guide to End-of-Life Care: Practical Tools for Emotional, Social, and Spiritual Support for the Dying. A. Strada. New Harbinger, 2013.

The Hospice Companion, 2nd Edition. P. G. Fine & M. Kestenbaum. Oxford University Press, 2012.

Hospice and Palliative Care: The Essential Guide, Second Edition. Stephen R. Connor. Routledge, 2009.

Hospice and Palliative Care Formulary USA, 2nd Edition. Robert Twycross and Andrew Wilcock. Palliativedrugs.Com Ltd, 2008.

LGBTQ-inclusive hospice and palliative care. Kimberly D. Acquaviva. Harrington Park Press/The Haworth Press, 2017.

Living at the End of Life: A Hospice Nurse Addresses the Most Common Questions. Karen Whitley Bell. Sterling Ethos, 2009.

Longing for Nothingness: Resistance, Denial, and the Place of Death in the Nursing Home. Andrew Stein. Jason Aronson, 2010.

Nursing Home Survival Guide: An Insider's Perspective on Everything from Admission to Discharge. L. Green. CreateSpace, 2012.

On Death and Dying: What the Dying Have to Teach their Doctors, Nurses, Clergy, and their Own Families. Elisabeth Kubler-Ross. Scribner, 1969.

Oxford Handbook of Ethics at the End of Life edited by Stuart Younger & Robert Arnold. Oxford University Press, 2016.

Palliative care: Transforming the care of serious illness. (Robert Wood Johnson Foundation series on health policy) Diane Meier, Stephen Isaacs, & Robert Hughes (Eds). Jossey-Bass, 2010.

Palliative and End of Life Care for Children and Young People: Home, Hospice, Hospital. Anne Grinyer. Wiley-Blackwell, 2012.

Providing The Best Care Option For Your Elderly Parents: Everything you need to know about elderly care including homecare, assisted living, nursing home options, hospice, and more! CreateSpace, 2009.

When Breath Becomes Air. Paul Kalanithi. Random House, 2016.

 

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