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WEBLINKS: Death & Dying / Hospice
Following are web links to sites that offer information, commentary, or experiences regarding terminal illness issues. These links are provided for illustrative purposes only. Use them in your own discretion. Act with the advice of a qualified professional.(See: Notice on Home page.)
DEATH & DYING / HOSPICE:
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AARP (American Association of Retired Persons):
- Hospice for End of Life Care -- Hospice addresses the physical, emotional, and spiritual needs of the dying patient and family members.
- Live Your Final Days to the Fullest -- Palliative care is a team approach for people whose chronic or life threatening illnesses don’t respond to a treatment for a cure.
- Talking about Your Final Wishes
- Web Resources for Consumers -- Resources about end of life issues for those who are coping with the loss of a loved one.
ABC-TV (Alabama TV 33/40):
- Music Therapy Increasingly a Part of End-of-Life Care, (01/26/08):
- With a guitar and melodies ranging from gospel to country, Jennifer Trippe offers soothing sounds to a small audience far from the lights of a stage. She uses music to comfort terminally ill patients with Wiregrass Hospice in Dothan, one of about 250 music therapists across the country whose practice is devoted to the end-of-life experience. She says it helps if a patient is depressed. They even start singing along sometimes. * * *
AGS Foundation for Health in Aging:
American Bar Association:
- Incapacitated and Alone: Healthcare Decision Making for Unbefriended Older People, by Naomi Karp & Erica Wood, published in the ABA's Human Rights Magazine (Spring, 2004) -- Synopsis: This article highlights key findings from Incapacitated and Alone: Health Care Decision-Making for the Unbefriended Elderly (ABA Commission on Law and Aging, 2003).
American College of Physicians:
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American Geriatrics Society:
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American Hospice Foundation:
- Resources: Booklets on grieving and other end-of-life topics can be ordered.
American Psychological Association:
- "End-of-life Issues and Care":
- General Fact sheet on End-of-Life
- End of Life Tasks & Decisions
- Issues to Consider When Exploring End-of-Life Decisions
- The Role of Psychology in End-of-Life Decisions & Quality of Care Issues
- Historical Changes Affecting End-of-Life Care
- Issues of Access & Variability in Health Care at the End of Life
- Terminology, Definitions, & Other Barriers to Communication
- Assisted Suicide
- Glossary of Terms
- Resources
American Medical Association:
- Dying well in America: What is required of physicians?, by Richard Payne, MD
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Americans for Better Care of the Dying:
- Mission: Dedicated to social, professional, & policy reform aimed to improve the care system for patients with serious illness, and their families.
- Resources: Various, including excerpts from the books Handbook for Mortals and Improving Care for the End of Life.
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Caring Connections:
Mission: A program of the National Hospice and Palliative Care Organization.
Resources: Provides state-specific advance directives for all 50 states.
Catholic News Agency:
- "Divorced parents contest life-sustaining feeding tube for brain-damaged adult daughter", posted by the Catholic News Agency (02/08/08).
- Excerpt: In a case recalling the conflict over Terri Schiavo, two divorced parents in Delaware are fighting over whether to continue life-sustaining nutrition for their brain-damaged adult daughter, the News Journal reports. Lauren Richardson, 23, has been in a so-called persistent vegetative state since overdosing on heroin in August 2006. Pregnant at the time, she was kept alive at a hospital with feeding tubes and a breathing machine until she gave birth in February 2007 to a healthy baby girl. Her parents Randy Richardson and Edith Towers are currently disputing whether her feeding tube should be removed.Towers, who says her daughter did not wish to live in such a state and wants the feeding tube removed, was awarded guardianship of Lauren in January. Her father Randy Richardson disagrees, "She's committed no crime and doesn't deserve to have this death imposed on her," he told the News Journal. He is appealing the ruling awarding guardianship to Towers, his ex-wife. The appeal will take three months. Lauren lacked any living will or advance directive recording her wishes in writing. * * *
Center to Advance Palliative Care (CAPC):
- Mission: Resource for hospitals and health systems interested in developing palliative care programs. The Center serves a broad constituency of providers and interested groups - including physicians, nurses, educators, policymakers, health researchers, payers, students and, ultimately, patients and their families - in an effort to improve the availability and quality of palliative care.
Compassion and Choices
Court TV:
- "Expert: Doctor's failure to obey grandmother's end-of-life wishes was 'ludicrous'", by Matt Pordum (03/02/07).
- Synopsis: "Attorneys for Neumann's estate accuse Bensimon and the nursing home staff of battery, breach of contract and negligence for violating Neumann's wish that no life-prolonging measures be used on her." * * * "A nursing home management specialist testified Thursday thatit was"ludicrous" how the professionals at Madeline Neumann's nursing home failed to acknowledge her end-of-life rights and wishes. Christine Malmuth told jurorsin a civil trial against Dr. Jaimy Bensimon and the Morse Geriatric Center that their actions made it impossible to create a viable health care plan for Neumann."
Dallas Morning News:
- "Dying on your own terms", by Jeffrey Weiss (06/16/07)
- Synopsis: "Ruth Graham case puts spotlight on value of early end-of-life talks".
- Excerpt: The dignified, semi-public passing of Ruth Graham showed a family struggling with end-of-life issues that affect many American families: private home, hospital or nursing home? Aggressive treatment to the end or comfort care? When is it time to let go? Mrs. Graham, who died Thursday, was not merely the wife of a famous person. Her husband, Billy, is among the best-known religious leaders in the world, and Mrs. Graham carried her own moral and religious reputation. Who she was drew particular attention to the moral decisions associated with the end of her life. * * * How she and her family reached that decision offers valuable lessons for others who will inevitably face similar situations, said professionals who work with the dying. The most important lesson: Don't wait to discuss end-of-life questions. Talk with your family, prepare an "advance directive" or living will, think through what you do and do not want done to you as you approach your death.
Death: An Inquiry into Man's Mortal Weakness:
- Mission: A teaching resource by Oracle Education Foundation's Think Quest.
- Topics:
Death With Dignity National Center:
- Mission: A non-partisan, non-profit organization that has led thelegal defense and education of the Oregon Death with Dignity Law for more than 10 years.
- Resources: See extensive links to website and links to news stories.
Elder Law Journal:
- De-Moralizing Death: A Humanistic Approach to the Sanctity of Life, by Shelly Cohen, 14 Elder L.J. 91 (2006) -- Argues that the law, generally, has provided an inadequate foundation for courts to rely upon when addressing issues surrounding the sanctity of life.
Encyclopedia of Death & Dying:
- Synopsis: A searchable, online encyclopedia of terms (alphabetically arranged) relating to topics of death & dying, with commentaries by readers.
Family Caregiver Alliance:
Fort Worth Star-Telegram:
- "Though Some Have Called Thee Mighty and Dreadful", by Diane Gatzke (02/10/07).
Foster's Online (Dover, NH):
- "Discussion on end-of-life care needed", by Gretyl Macalaster (06/18/07).
- Excerpt: "Dr. Ira Byock thinks the conversation about reclaiming the end of life and making it a comfortable, even enjoyable period is long overdue. Byock, Director of Palliative Medicine at Dartmouth-Hitchcock Medical Center, is trying to facilitate a national conversation on end of life issues, including the improvement of life for the frail and disabled, and their caregivers. His targets are presidential candidates." * * *
- Reference: Reclaiming the End of Life Initiative.
Good Endings -- The Experience of Caring for People at the End of their Lives:
- Mission: "Death is faced frequently in our nursing homes. Unconditional compassion is a must in working with the dying. There is a great need for psychosocial and psychological death education for nursing home staff.It is important to die with dignity and peace. It is our mission to provide this in our nursing homes."
Growth House, Inc.:
Help Guide:
- Source: A project of the Rotary Club of Santa Monica and Center for Healthy Aging.
Hospice Caring, Inc.:
- Mission: A non-medical volunteer hospice in Gaitersburg (Montgomery Co.) MD, offering free practical & emotional support to terminally ill adults and children and their families, and to anyone grieving the death of a loved one."
- Resources: A volunteer with HCI maintains an excellent list of references & resources on the topics of "Living with Life-Threatening Illness", "End of Life", "Caregiving", "Grieving", and "Helping Children with Parental Illness & Death".
Hospice Foundation of America:
- Mission: Promotes hospice and provides tools to educate professionals and the families they serve in issues relating to caregiving, terminal illness, loss and bereavement.
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Hospice Patients Alliance
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HospiceNet:
- Resources: Information about hospice for individuals & caregivers.
Hospital & Healthsystem Association of Pennsylvania:
"Innovations in End-of-Life Care":
- Synopsis: An international, online journal features peer-reviewed promising practices in end-of-life care, useful tools, selected bibliographies, and other resources.
- Note: Previously published bimonthly, as of October 2003, the journal no longer posted new issues; but all 28 past thematic issues, from January 1999 through September 2003, are archived & available to read, download, or print for free. For a chronological list of issues, click here.
- Resources: Tools derived from articles are available: Assessing Patients' Experience; Creating Systems of Care/Training; Standards; Relieving Pain; Curricular Materials/Training; & For Families and/or Patients
Kübler Ross, Elizabeth, "On Death and Dying":
- Synopsis: "This is the world-famous best-seller by the woman who popularized the field of thanatology as a subject for general social commentary. Written in plain language that anyone can understand, this important book can help families understand what's going on as death of a loved one draws near. This was Elisabeth Kübler-Ross' first book on the topic. It is still considered a classic. It is required reading in many academic settings, including medical and nursing schools, theological seminaries, and popular psychology courses." (1969).
- See also: Kübler-Ross model, which describes, in five discrete stages, the process by which people deal with grief and tragedy.
Kuhl, David, "What Dying People Want: Practical Wisdom for the End of Life":
- Published by Public Affairs (2002), 352 pages.
- Synopsis: "An all-encompassing guide for people with a terminal illness and those who know someone who is dying." -- New York Times.
Los Angeles Times:
- "The language of death:How lawmakers talk about assisted suicide highlights the language we use to soften our reaction to death", by Geoffrey Nunberg, author of "Talking Right" & a linguist at UC Berkley's School of Information (02/12/07).
- Excerpt: "The choice of words makes a big difference in how people come down on laws governing the choice to die. In a 2005 Gallup survey, 75% of adults agreed that doctors should be allowed by law to 'end the lives' of patients suffering from incurable diseases if the patient and his or her family requested it. But when the question was worded as permitting doctors to 'assist the patient to commit suicide,' only 58% of the respondents agreed. That's one reason supporters of the [proposed California] measures have shied away from talking about 'assisted suicide' in favor of a battery of gentler phrases, like 'aid in dying,' 'choice in dying' and 'end-of-life choices'."
Mayo Clinic:
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Merck & Co., Inc.:
Montreal Gazette:
- "Pattern emerges at the end of life", by Cheryl Cornacchia (02/10/07).
National Cancer Institute:
- End-of-Life Care: Questions & Answers:
- How long is the patient expected to live?
- When caring for the patient at home, when should the caregiver call for professional help?
- What are some ways that caregivers can provide emotional comfort to the patient?
- What are the signs that death is approaching? What can the caregiver do to make the patient comfortable?
- What are the signs that the patient has died?
- What needs to be done after the patient has died?
- What additional resources offer information about end-of-life issues?
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National Hospice Foundation
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National Hospice and Palliative Care Organization:
- Resources: Information about hospice, searchable database to locate hospices
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National Institutes of Health:
New York Times:
- "Tough Question to Answer, Tough Answer to Hear", by Jane E. Brody (03/06/07).
- Excerpt: "[P]rognosticating [a terminal diagnosis] is one of the most challenging tasks doctors face. Unless patients are within days or weeks of dying, it is often impossible to provide an accurate prognosis. And studies have shown that when doctors do try to gauge a patient’s remaining life expectancy, more often than not they overestimate it. Out of fear, ignorance or concern for their patients’ emotional well-being, they tend to be overly optimistic."
- "Taking the Time to Teach, and Learn, About Advance Directives", by Jane E Brody (11/28/2006), as posted by Death With Dignity National Center.
"The Last Word on the Last Breath", by Jan Hoffman (10/10/2006), as posted by Death With Dignity National Center.
Orlando Sentinel (Florida):
- "Peace in the midst of life's storm", by Mark I. Pinsky (04/01/07).
- Snyopsis: "When the human spirit is buffeted, a hospice chaplain guides with his head and heart -- even drawing strength from those in need."
- Excerpt: "A hospice chaplain meets that patient wherever they are," says Jeanne Twohig, deputy director of the Duke Institute on Care at the End of Life at the Duke Divinity School. "Sometimes that involves God, and sometimes it doesn't," she says. "The best hospice chaplains are nonjudgmental about that. The chaplain doesn't bring his or her own understanding of theology or religion unless that's what the patient wants. They just meet the patients where they are." And, says Caroline, this approach works."
Palliative Care Overview:
- Synopsis: Provides an overview of palliative care and pain treatment.
"Pallimed" Blog:
- Mission:A hospice & palliative medicine blog, founded in June, 2005, authored by Drew Rosielle, MD & Christian Sinclair, MD.
- Resources: Well-written, regular postings on indexed topics; Links to medical databases, blogs on similar topics, professional publications, involved organizations, & other helpful online resources.
President's Council on Bioethics:
Spirit India:
- Excerpts: Australian health practitioners now have new guidelines to help them discuss end-of-life issues with palliative care patients and their families. Clinical practice guidelines for communicating prognosis and end-of-life issues with adults in the advanced stages of a life-limiting illness, and their caregivers was launched today * * *. The document was developed by a team from Sydney and Flinders Universities, led by Dr Josephine Clayton, and funded by the National Health and Medical Research Council (NHMRC). The guidelines were published today as a special supplement to the Medical Journal of Australia. “The guidelines not only outline best practice in communicating about these issues, but also cover practical issues such as likely symptoms and how they are treated, and what will happen close to death."
Supportive Care Coalition
- Mission: Catholic health care organizations working to improve care of the dying.
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Tube Feeding Options at the End of Life: A Consumer & Caregivers Guide
- Author: James M. Hoefler, Ph.D., Dickinson College (Carlisle, PA).
- Topics: Medicine; Ethics; Law; Religion; & Resources.
HendershotNE |
Latest page update: made by HendershotNE
, Feb 10 2008, 1:06 PM EST
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