PA HealthCare DecisionMaking - Recently Updated Pages

Home

HendershotNE — Thu, 26 Feb 2009 15:21:31 CST

PA HealthCare DecisionMaking

This website focuses on individual & representative health care decision-making, involving aging, medical, & "end-of-life" decisions, in Pennsylvania (under Act 169 of 2006, effective 01/29/2007), with reference to trends nationally.

Sitemaster is Neil E. Hendershot, Esq., of Harrisburg, PA, who practices in elder law, estate & personal planning, fiduciary administrations, & Orphans' Court litigation, at Tucker Arensberg, P.C., teaches as an Adjunct Professor at Widener University School of Law (Hbg Campus), and authors the PA ELDER, ESTATE & FIDUCIARY LAW BLOG.

Professional education courses presented by the Pennsylvania Bar Institute (affiliated with the Pennsylvania Bar Association) & certain PA county bar associations (Montgomery, Lebanon, & Lancaster) refer to this website as course material. Online audio webcast, CD audio replay, & DVD video display of courses are available. See: Act 169 Courses.

See the "Website Notice of Rights & Disclaimers" below. Ads on this site appear from the hosting service, not the author.

Pennsylvania Statute

Click the OPEN COMPASS or the SITE TITLE to return to this PAGE.

Click the FLAT COMPASS to return to the TABLE OF SECTIONS.

Title 20 PA. C.S., Chapter 54, "Health Care" (Unofficial, with Table of Sections & cross-links)

Pennsylvania Forms

Durable Health Care Power of Attorney & Health Care Treatment Instructions (Living Will):

Official sample form perPA Department of Aging (PDF, 9 pages)
Official sample form perPA Department of Health(PDF, 9 pages)
Unofficial sample form per PA HCDM's Section 5471
For more forms, see below, under "Forms & Explanations".

Resource Links

ADMINISTRATIVE:

BACKGROUND:

BLOG (Log of Website Additions)

CASES:

Various Other Authorities

COMMENTARIES:

FORMS & EXPLANATIONS:

LEGISLATION:

REFERENCES:

Media Articles

Other States

STATUTES:

VISUALS:

VOICES:

WEB LINKS:

* * *

"For it is in giving that we receive."
-- Saint Francis of Assisi (1182-1226)

* * *

Note: The free Adobe Acrobat Reader, needed to view some documents,
is available for download & installation here.

This site remains "under construction" always.
It will be updated periodically & sporatically.
Comments or suggestions for resource links are welcome by email addressed to:

HendershotNE@gmail.com OR NHendershot@tuckerlaw.com.

Website Notice of Rights & Disclaimers

Information in this website is provided to the public for educational purposes only.

Reading or using this website does not, alone, create an attorney-client relationship with me or with Goldberg Katzman, P.C. Nothing on this website, or links from it, shall constitute legal advice or formal opinions; and no reader is justified in relying solely upon the contents of this website or upon any links. If a reader requires legal advice or services, contact a qualified attorney licensed in the appropriate jurisdictions or forums to provide personal, confidential advice or representation. More specifically, to the extent this website references any federal tax matters, such entries cannot be used by a taxpayer for the purpose of avoiding penalties that may be imposed under law, according to IRS Circular 230.

Any opinions expressed by me on this website are solely mine, and not those of Goldberg Katzman, P.C., the Joint State Government Commission, the Pennsylvania Bar Institute, the Pennsylvania Bar Association, Widener University School of Law, or any other organization with which I am associated. By supplying a link to another website, I do not endorse its views. I always urge due diligence and discretion when evaluating the veracity of any material found on the worldwide web, regardless of the referral source.

Contents of this website are subject to change without notice. Entries may contain dated, inaccurate, or incomplete information on the subject matter.

This site's presentation & any original material are Copyright © 2006-2009 by Neil E. Hendershot, with "All Rights Reserved". Copied or cross-referenced materials on this website are displayed under the federal "Fair Use Doctrine", with full recognition of the copyrights secured by others.

Any comments or objections about the use of material on this website should be directed immediately to me at: HendershotNE@gmail.com.

ADMINISTRATIVE: Author-Sitemaster

HendershotNE — Thu, 26 Feb 2009 13:23:19 CST

Following is information about the author-sitemaster of this website, PA HealthCare DecisionMaking.

(See: Notice on Home page.)

AUTHOR-SITEMASTER:

Neil E. Hendershot practices law with Tucker Arensberg, P.C., in Harrisburg, Pennsylvania. The law firm is headquartered in Pittsburgh, PA, and has other offices in Moon Township (Corapolis), in Sewickley, and in Lewistown, Pennsylvania.

Neil authors the "PA Elder, Estate & Fiduciary Law Blog", and also the "PA HealthCare DecisionMaking" website.

Neil was educated at Bucknell University (B.A., English, 1973), and The Dickinson School of Law (J.D., 1976), which is now affiliated with Pennsylvania State University.

In 1976-77, he served as law clerk to President Judge Martin J. Coyne, of the Orphans' Court Division, of the Court of Common Pleas of Lehigh County, Pennsylvania. He served as the Solicitor for Dauphin County, Pennsylvania (1984-85), and as the Solicitor for the Dauphin County General Authority (1984-2000). He is a graduate of the Leadership Harrisburg Area Program (1990).

Neil participates actively in state and local bar association activities. In 2002-03, Neil served as Chairman of the Real Property, Probate & Trust Law Section, of the Pennsylvania Bar Association. He has served as an Editor of that Section's bi-annual Newsletter continuously since 1983 to date. He is currently (2007-09) that Section's elected delegate to the PBA House of Delegates, and is serving a three-year term on the RPPT Section's governing Council.

Neil served as President of the Dauphin County Bar Association (1999-2000), and served on its Board of Directors from 1992-2001. Neil has served as a Chairman of the Dauphin County Bar Association's Orphans' Court Rules Committee since 1989 to date. In 1991, he organized and was elected as the Founding Chairman of the DCBA's Estate Planning & Probate Law Section. He planned & conducted for that practice section a "Probate Bench-Bar breakfast" (2004-06), now sponsored (2009) by PNC and its PNC Wealth Management affiliate.

In October 2004, Neil was a PBA spokesperson for its statewide publicity campaign, conducted with the Office of the Pennsylvania Attorney General on Living Trust Abuse, entitled “Protect Your Family’s Future … Today: The Truth About Wills and Trusts” (County Line, p. 9). Neil has also advocated for change in the laws regarding powers of attorney. See: Final "Courting Trouble" Article on POA Abuse (PA EE&F Law Blog, 09/05/07). He lectured to the York County (PA) Bar Association (11/08), the Dauphin County (PA) Bar Association (02/12/09), and the Pennsylvania Conference of State Trial Judges (02/19/09) in Pittsburgh about elder abuse and the roles that attorneys and the judicial system can play in its supression.

Neil is active also in community activities. Since 1978, he has been a member of the Estate Planning Council of Central Pennsylvania, Inc., having served as its Presidentin (1987-88). Neil served as President of the American Heart Association, Pennsylvania Affiliate, Capital Region Division (1995-96), with a position on its board from 1981 to 1996. He co-chaired the Lawyers' Division of the Annual Campaign of the United Way of the Capital Region (1997-99). Neil is a "Founding Sponsor" of the Museum of the Antique Automobile Club of America, organized in 1992, and located in Hershey, PA. He is a Rotarian and a Mason.

Neil provides input to the PA Legislature on laws affecting seniors. Since 1992, Neil has served as a member of the "Advisory Committee on Decedents' Estate Laws", of the Pennsylvania Joint State Government Commission. He has been active on its legislative drafting subcommittees, including those on "Guardianships", Powers of Attorney" (effective 1999), "Transfers on Death", "Health Care Powers of Attorney" (effective 2007), and the Pennsylvania version of a "Uniform Trust Act" (effective 2006), under the PA Probate, Estates & Fiduciaries Code (Title 20, PA Consolidated Statutes).

Currently he participates on active JSGC-ACDEL drafting subcommittees or legislative study committees on issues of: "Transfers without Grant of Letters", "Guardianships & Durable Powers of Attorney", "Alternative Dispute Resolution", "Assisted Reproductive Technologies", and "Disposition of Remains" (which he chairs).

In 2002, Neil proposed (through the PBA RPPT Section), and the PA Legislature then authorized during a Special Legislative Session, the creation of a new JSGC advisory committee on "Real Property Laws", which was established & has become active in codifying Pennsylvania's laws regarding real estate.

Neil was appointed in 2008 to serve as a member of the Pennsylvania Supreme Court's seven-member Orphans' Court Procedural Rules Committee for a three-year term.

Neil teaches regularly & often. Since 1978, he has lectured annually for the Pennsylvania Bar Institute on topics of estate planning, document drafting, elder law, estate & trust administration, death taxation, personal planning for pet owners, and legal automation. He planned PBI's statewide courses on Act 39's Power of Attorney Reforms (1999) and on End-of-Life Legal Issues (2005). He was a key participant in the PBI statewide course on the new PA Uniform Trust Act (Fall, 2006).

He also served as the course planner for a PBI call-in course Personal Health Care Decision Making in Pennsylvania: An Analysis of Act 169 (January, 2007) and as a participant in the PBI course Health Care Directives & Powers of Attorney - 2007. In September, 2007, Neil, together with Professor Gerry W. Beyer, of Texas Tech University School of Law (& author of the respected Wills, Trusts & Estates Prof Blog), presented a PBI audio course on "Estate Planning for Pets", for which he constructed the educational website, Pet Owners Planning.

He has also made presentations to numerous estate planning councils or local bar associations in Pennsylvania, including those in Carlisle, Chambersburg, Harrisburg, Lancaster, Lebanon, Norristown, Selinsgrove, & York.

From 2000-06, he taught advanced estate planning & administration at Widener University School of Law (Harrisburg Campus) as an Adjunct Professor; and, since 2005 to date, Neil has taught an "Elder Law" course at a seminar level. He also serves on the Board of Visitors for Widener Law School's "Law & Government Institute", in Harrisburg.

Neil is an elected Fellow of the American College of Trust and Estate Council (ACTEC), a national professional group of approximately 2,600 lawyers, with only approximately 100 Fellows in Pennsylvania. He was selected for "Best Lawyers in America" annual publications (2000-2009), and in annual Philadelphia Magazine Super Lawyers issues (2004-2009). He is an"AV"-rated lawyer by Martindale-Hubbell, and carries a 9.9 ("superb") rating by Avvo.

Neil practices in the areas of elder law, personal & estate planning, family business succession, estate & trust administration, Orphans' Court (PA probate court) litigation, real estate, and charitable organizations.

To contact Neil, please email him at NHendershot@tuckerlaw.com or HendershotNE@gmail.com.

BLOG

HendershotNE — Tue, 26 Feb 2008 12:24:56 CST

Following are links added to other sections of this website recently, in chronological order, that offer information, commentary, or experiences regarding health care decision-making by individuals or by their agents/representatives. 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.)

BLOG: Log of Website Additions

WEBLINKS: Religious & Spiritual:

Evangelical Lutheran Church in America, Statement on "End of Life Decisions" (11/09/1992):

"With this message, the Church Council of the Evangelical Lutheran Church in America, upon the recommendation of the Division for Church in Society, addresses some timely aspects of end-of-life situations and encourages further deliberation on the topic throughout this church. This message does not deal with the full scope of these complex matters. It draws upon a relevant social statement, "Death and Dying," of a predecessor church body as basis for the guidance it offers."

WEBLINKS: Death & Dying/Hospice:

"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. * * *

WEBLINKS: Medical Professionals:

"Families chafe at physicians' power to give up life support" -- Courts left to decide who holds patient's fate, by Andria Simmons,published in The Atlanta Journal-Constitution (02/08/08).

Excerpt: From a legal standpoint, being brain-dead is the same as being dead.Before a patient can be declared brain-dead, two doctors must evaluate the patient on two occasions. Dr. Michael Hartman, a neurologist at Emory Eastside Medical Center, routinely removes patients from machines that support organ function after he declares brain death. Hartman said the physicians have to make the tough decisions when families can't. "If you let them take control, they will never let go," Hartman said. "I realize this lack of control families must feel when we go in, but it's part of the job." Hawkins' lawyer, Crongeyer, says that stance is "kind of a scary [thing]." * * *

WEBLINKS: Death & Dying / Hospice:

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. * * *

WEBLINKS: Medical Professionals:

Scientific American,"When to let go? Medicine's top dilemma", by Tom Heneghan (07/16/07).

Excerpt: "End-of-life issues top the list of ethical dilemmas hospitals face as medical progress enables doctors to extend an endangered life to the hard-to-determine point where they may actually only be dragging out death.* * * These patients used to just die naturally, but now it might be doctors, hospital ethics committees or courts that decide if and when to let them. The more science discovers, especially about the brain, the harder it can get to make that decision. * * *

WEBLINKS: Religious & Spiritual:

Daily Press:"Physical death does not mean the end of life" (07/07/07).

Excerpt: "Recently, The Rev. Joy Gatling and I gave comfort and counsel to a young man whose fiancé had been brutally murdered in her apartment. The suddenness of this tragedy happening to someone he dearly loved had emotionally crushed him. The thought of not ever seeing her again was what grieved him the most. He was comforted when we explained why he would see his beloved again.* * *"

WEBLINKS: Personal Stories:

"Student's will aids in life or death decision", by Devin Culclasure, posted July 5, 2007, in the Independent Florida Alligator Online.

Excerpt: The friends and family of Henry Crane, a UF chemistry senior, said he was always ready to help people. Now, even on life support, he's still helping.Crane, 21, was cycling on Archer Road near Shands at UF when a car struck him at about 9 a.m. Tuesday. * * * As of Wednesday evening, Shands medical staff was arranging recipients for Crane's organs. Crane's family members said he would be taken off life support early this morning. After the crisis over Terri Schiavo, Crane decided to create a living will at the age of 19. It was a comfort, Crane's mother said, because the family could follow his wishes exactly.

WEBLINKS: Bereavement & Coping:

Deits, Robert, Life After Loss: A Practical Guide to Renewing Your Life After Experiencing Major Loss:

Published by Da Capo Press (2004), 256 pages.

Synopsis: "Loss can be overwhelming, and recovery sometimes seems terribly daunting, if not impossible. * * * [T]he only way past grief is through it. In this newly revised edition of Life after Loss, Deits offers sound guidance for navigating the uncertain terrain of grief. With practical and compassionate advice, personal stories, and helpful exercises, Life after Loss is not just about understanding grief -- it's about doing something about it."

WEBLINKS: Religious & Spiritual

HendershotNE — Tue, 26 Feb 2008 12:16:13 CST

Following are organizations or references that offer information, commentary, or experiences regarding the religious or spiritual aspects of personal health care decision-making. These references are provided for informational purposes only. Use them in your own discretion. Act with the advice of a qualified professional.

(See: Notice on Home page.)

RELIGIOUS & SPIRITUAL:

Anderson, Megory, Sacred Dying: Creating Rituals for Embracing the End of Life:

Published by Prima Publishing (2001), 364 pages.
Review: "Life & Death On Your Own Terms", by Mary Ellen Foti, M.D. -- "Sharing the commonality of topic and tactic, Sacred Dying Life and Death on Your Own Terms speak to the multiple complexities of achieving a "good death" in today's reign of medical technology. That Americans have specific preferences about both how and where they want to die has been documented in numerous studies. However, despite this research, the end of life is all too often a harrowing experience for patient and family alike. Anderson and Basta offer possible remedies for this problem."

Associated Press:

"Catholics seek guidance on end-of-life issues" (01/12/07).

Association of Professional Chaplains
Buddha Dharma Educational Association:

Buddhist Articles & eBooks on Death and Dying

Chopra, Deepak, Life After Death: The Burden of Proof (Oct, 2005):

Synopsis: "Chopra draws on cutting-edge scientific discoveries and the great wisdom traditions to provide a map of the afterlife. It's a fascinating journey into many levels of consciousness. But far more important is his urgent message: Who you meet in the afterlife and what you experience there reflect your present beliefs, expectations, and level of awareness. In the here and now you can shape what happens after you die."
See also: Physicians on Mortality & Dying: Part II, by Neil E. Hendershot -- A commentary posted on the PA Elder, Estate & Fiduciary Law Blog (01/29/07).

Christianity Today:

Euthanasia Confusion, by Rob Moll, Associate Editor (02/01/07).

Synopsis: "Newspaper accounts of end-of-life debates too often muddle the issues".
Sample: "Having a positive vision of what death should look like — with confession, goodbyes to family and friends who watch in vigil, and last words, completed at home or another comfortable and familiar location — would help us navigate the tricky waters of end-of-life medicine."

Daily Press (Hampton Roads, VA):

"Physical death does not mean the end of life" (07/07/07).

Excerpt: "Recently, The Rev. Joy Gatling and I gave comfort and counsel to a young man whose fiancé had been brutally murdered in her apartment. The suddenness of this tragedy happening to someone he dearly loved had emotionally crushed him. The thought of not ever seeing her again was what grieved him the most. He was comforted when we explained why he would see his beloved again.* * *"

Death & Dying in Islam -- Muslim attitudes towards death.
Dying, Yamaraja and Yamadutas + terminal restlessness -- Vedic/Hindu view
Eisenberg, Daniel Eisenberg, MD, "End of Life Choices in Halacha",

Note: One of various "Jewish Law Articles Examining Halacha, Jewish Issues and Secular Law".

ElderWeb:

"Religious Guidance on End of Life Decisions"

Evangelical Lutheran Church in America, Statement on "End of Life Decisions" (11/09/1992):
- "With this message, the Church Council of the Evangelical Lutheran Church in America, upon the recommendation of the Division for Church in Society, addresses some timely aspects of end-of-life situations and encourages further deliberation on the topic throughout this church. This message does not deal with the full scope of these complex matters. It draws upon a relevant social statement, "Death and Dying," of a predecessor church body as basis for the guidance it offers."
Fischer, Kathleen, Imaging Life After Death: Love That Moves the Sun and Stars:

Published by Paulist Press (2004), 192 pages.

Synopsis: "The award-winning author, theologian, and psychotherapist Kathleen Fischer illuminates the mystery of the afterlife in Christian and non-Christian (Hindu, Buddhist, Sikh, Jewish, American Indian, among many) traditions in this probing, eloquent, and reassuring meditation drawn from sources as varied as religion, literature--Dante, St. Exupery, Tolkien, Mary Oliver, Jane Kenyon--science (quantum physics and cosmology), psychology, personal and professional experiences. The author centers her book on the three questions fundamental to belief in life after death: "What survives death? Do relationships continue beyond death? How does life now relate to life then?" Within this construct, she soberly and lyrically rethinks the meaning of soul, presence, transformation, discussing the imagery of the afterlife -- light, fire, seeds, butterflies, angels -- and the use of portents of the divine found in nature, and experiences of beauty, justice, love, humor and hope, all the while emphasizing that focus on the afterlife, does not absolve us of our commitment to our present life. She shows the same compassionate allegiance to the dying and grieving, in a singular discussion. Completing her work are end chapter prayers and reflections, extensive annotated bibliography and suggestions for further reading."

"Florida Catholic Declaration on Life and Death":

Source: This 2001 Declaration updates similar documents published in 1990, 1993 and 1998 by the Florida Catholic Conference. This form is deemed acceptable for Catholics, and conforms with Florida law.

Gundersen Lutheran "End-of-Life Care":

Mission:Programs that help health care providers implement advance directives in hospitals.

International Scientific Research into 'Survival after physical death':

Snynopsis: Overview of research fields, academic documents and publications, science labs & organizations.

Kramer, Kenneth, The Sacred Art of Dying: How World Religions Understand Death:

Published by Paulist Press (1988), 226 pages.
Synopsis: "Examines how each of the major religions looks at death by including stories, teachings, and rituals which present a comparative religious meaning of death and afterlife. Written in textbook style with journal exercises at the end of each chapter."

Lamm, Maurice,Jewish Way in Death and Mourning
Last Rights: Rescuing the End of Life from the Medical System

Book by Stephen Kiernan (Nov, 2006).
Hear also: Interview about end-of-life care broadcast on National Public Radio's Fresh Air.

Momeyer, Richard W., Confronting Death:

Published by Indiana University Press (12/01/1988).
Synopsis: ""This book is valuable and important in bringing conceptual clarification to questions about dealing with death that are so often neglected or mishandled by social scientists and the counseling industry." * * * "An examination of the moral and philosophical issues at work in an individual's confrontation of death, not as a matter of psychological necessity or social conditioning, but as a function of reflection and the search for self-knowledge."

National Catholic Bioethics Center (NCBC):

Mission: Established in 1972, conducts research, consultation, publishing and education to promote human dignity in health care and the life sciences, and derives its message directly from the teachings of the Catholic Church."
Explanation & Form: Catholic Guide to End-of-Life Decisions

Synopsis: "This pamphlet describes how someone might approach end-of-life decisions in light of the teachings of the Catholic Church. We consider the redemptive nature of suffering, the important difference between morally obligatory and optional means of conserving one's life, the moral and legal status of Advance Medical Directives and Durable Power of Attorney, and the spread of euthanasia advocacy in America today."
Note: The forms referenced are only available by order from the NCBC Publications Department.

Postings/Publications:

Novak David, Ph.D., "Reconciliation at the End of Life":

Published in the Yale Journal for Humanities in Medicine (12/16/2002).

Pennsylvania Catholic Conference:
- Planning Ahead for End-of-Life Care (Mid-2005)
- PA Catholic Conference Statement on the Death of Terri Schiavo (03/31/05)
- PA Bishops Call for Renewed Attention to Advance Directives (03/23/05)
- PCC, PCHA React to Veto of Living Will Bill (12/02/04)

PCC and PCHA Laud Changes Made to Living Will Law (11/23/04, before Governor's Veto of SB 492)
Nutrition & Hydration: Moral Considerations -- A Statement of The Catholic Bishops of Pennsylvania (Rev. 1999)

Living Will and Proxy For Health Care Decisions (1993)
Nutrition and Hydration: Moral Considerations (1991)

Puchalski, Christina, M., A Time for Listening and Caring: Spirituality and the Care of the Chronically Ill and Dying:

Published by Oxford Press (June, 2006).
Synopsis: "[E]dited and co-authored by Dr. Christina Puchalski, Director and Founder of GWish, [this book] addresses the spiritual issues involved in the care of the chronically ill and dying. The various contributors to the book offer wise insights and practical advice for addressing the pressing spiritual needs of those who are sick or dying."
Contents: "Part one discusses aspects of spirituality, such as presence, ethics, and relationships. Part two delves into a number of specific religious and theological traditions. Part three offers practical applications and tools, including storytelling, psychotherapy, dance, music, and the arts. Part four focuses on patients' stories and reflections. The book concludes with appendices that have sample advance directives for Protestant, Catholic, Jewish, and Muslim patients."

Reinis, Arustra, "Reforming the Art of Dying: The ars moriendi in the German Reformation (1519-1528)":

Synopsis: Written by an assistant professor of religious studies at Missouri State University & published by Ashgate Press (Feb, 2007, 304 pages), this book "examines how Luther instigated a radical transformation in the public's attitudes towards dying and death. * * * Luther realized the righteousness of God is not something with which he punishes sinners, but rather something that God gives to sinners. Basically what Luther did was write books on how to reform all aspect of the Christian life based on this idea that righteousness -- or forgiveness of sins and eternal life -- is a gift. * * * [T]he book will appeal not only to academics, but also to physicians, nurses, hospice workers and others who deal with death and dying in their profession."
Press Release: "Professor's Book Investigates Changing Beliefs on Death and Dying; New Book Will Appeal to Physicians, Nurses, Hospice Workers, Academics" (02/27/07).

Sulmasy, Daniel P., "Hope and the Care of the Dying Patient: A Catholic, Christian Perspective":

Published in the Yale Journal for Humanities in Medicine (05/10/2002).

Tibetan Book of the Dead:

Synopsis: The Bardo Thodol also spelled Bardo Thotrol, translated as The Tibetan Book of the Dead, for centuries was passed down orally. This ancient text was first put into written form by the legendary Padma Sambhava in the 8th century A.D. Translated, Bardo Thodol means "liberation by hearing on the after death plane". The book acts as a guide for the dead during the state that intervenes death and the next rebirth."

Resources: Online Exhibition, "The Tibetan Book of the Dead", by the University of Virginia Library (1998); Wikipedia online explanation of the Bardo Thodol.

Tikkun -- a Jewish Magazine within an Interfaith Movement:

"Dying in the Spirit: A Progressive View of Decision-Making at Life's End", by Barbara Coombs Lee (Mar-Apr, 2007 Issue)
Excerpt: "My preferred ethical guidelines would apply these principles equally and openly to palliative care, terminal sedation, withdrawal of life support, and aid in dying. The two crucial ethical questions would be: *Is the proposed action wholly in service of love and compassion? *Does the proposed action follow the wishes of the patient and affirm her inherent worth and dignity?If patient, family, doctors, and others agree the answers are an unequivocal 'yes,' the action is both moral and ethical in my book, even if death is an intended consequence. Sound public policy would apply additional constraints in the form of eligibility guidelines and procedural safeguards, and these would elaborate and refine the basic ethics analysis."

Toolkit of Instruments to Measure End-of-Life Care -- Spirituality: One of the Key Concerns of Dying Patients:

Published by Brown University's Center for Gerontology and Health Care Research

United States Conference of Catholic Bishops, "Ethical and Religious Directives for Catholic Health Care Services" (2001):

Synopsis: " This fourth edition of the Ethical and Religious Directives for Catholic Health Care Services was developed by the Committee on Doctrine of the National Conference of Catholic Bishops and approved as the national code by the full body of bishops at its June 2001 General Meeting. This edition of the Directives, which replaces all previous editions, is recommended for implementation by the diocesan bishop and is authorized for publication."

Excerpt: " These Directives presuppose our statement Health and Health Care published in 1981. There we presented the theological principles that guide the Church's vision of health care, called for all Catholics to share in the healing mission of the Church, expressed our full commitment to the health care ministry, and offered encouragement to all those who are involved in it. Now, with American health care facing even more dramatic changes, we reaffirm the Church's commitment to health care ministry and the distinctive Catholic identity of the Church's institutional health care services. The purpose of these Ethical and Religious Directives then is twofold: first, to reaffirm the ethical standards of behavior in health care that flow from the Church's teaching about the dignity of the human person; second, to provide authoritative guidance on certain moral issues that face Catholic health care today."
Commentary: "End-of-life teaching more than 'dilemmas, controversies,' priest says", by Nancy Frazier O'Brien, published by the Catholic News Service.

USA Today:

"Health system struggles with spiritual care", by Liz Szabo (02/15/07).

Sample: "For patients who are dying of cancer, few things are as profound as their relationship with God. Among the terminally ill, studies show, being at peace with God is more important than just about anything else, ranking only marginally lower than the desire to ease physical pain. Tracy Balboni says she was inspired to study the spiritual needs of dying patients because of her work as a radiation oncologist. About 40% of the services she provides, she says, go to patients who have little to no hope of cure but who need relief for pain or other symptoms. * * * [R]esearch also suggests that hospitals, doctors and even religious communities fail to support the spiritual needs of their cancer patients at the end of life."

Wald, George,"Origin of Death":

Synopsis: A biologist explains life and death in different kinds of organisms in relation to evolution (1970).

Wiseman OSB, Fr. James, & Rev. Heng Sure, Ph.D., Reflections on Death and Dying: Buddhist and Catholic Teachings and Practices:

Source: Monastic Interreligious Dialogue, Bulletin 77, July 2006
Topics: "Realizing the Deathless or Seeking Rebirth in the Pure Land?"; and "Buddhist Views on Life, Dying, and What Comes Next".
Synopsis: "These two presentations on death and dying constituted the 'public event' of the Second Monks in the West Conference held at Saint John's Abbey in Collegeville, Minnesota." (10/26-29/06).

"Why is there death and suffering?"

Synopsis: Death viewed fom a creationist point of view.

WEBLINKS: Death & Dying / Hospice

HendershotNE — Sun, 10 Feb 2008 12:06:22 CST

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:

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:

Eldercare at Home: Dying at Home

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:
- Dying Person's Guide to Dying
- What to Do Before and After the Moment of Death
- When You Have Pain at the End-of-Life
American Geriatrics Society:
- End of Life Care: A Guide for Seniors and Caregivers
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":

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

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.

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:
- End of Life Choices - Feeding Tubes and Ventilators
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:

"Advance Health Care Directives and Living Wills: End-of-Life Choices—Make Your Wishes Known!"

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.

Hospice Patients Alliance
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:

Online Articles on "End-of-life" issues:

Merck & Co., Inc.:
- Death and Dying
Montreal Gazette:

"Pattern emerges at the end of life", by Cheryl Cornacchia (02/10/07).

Synopsis: "Near death awareness is not limited to the terminally ill in hospices and palliative care wards. * * * They talk about the light, their mothers and two or three weeks before (death), departed loved ones. When they start talking like that, it's a clue. * * * [t]here are almost always signs that can be read by caregivers, family members and nursing staff."

National Cancer Institute:
- End-of-Life Care: Questions & Answers:
National Hospice Foundation
National Hospice and Palliative Care Organization:
- Resources: Information about hospice, searchable database to locate hospices
- Artificial Nutrition (Food) and Hydration (Fluids) at the End of Life
- If You or Someone You Love is Very Ill...Ask Tough Questions
National Institutes of Health:
- End-of-Life Care: Questions and Answers
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:

End-of-Life Index

Spirit India:

"New guidelines for communicating end-of-life issues in Australia" (06/18/07).

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.
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.

WEBLINKS: Medical Professionals

HendershotNE — Sun, 10 Feb 2008 11:35:42 CST

Following are medical professionals that offer information, commentary, or experiences regarding health care decision-making by individuals or by their agents/representatives. 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.)

MEDICAL PROFESSIONALS:

American Board of Hospice and Palliative Medicine:

Mission: Provides information on palliative care and a directory of ABHPM certified physicians.

American College of Physicians - American Society of Internal Medicine:

Article: Living with a Serious Illness: Talking to Your Doctor When the Future Is Uncertain

American Journal of Preventative Medicine:

Kaplan, Robert M., "Shared Decision Making: A New Tool for Preventive Medicine", Am J Prev Med 2004;26(1), posted online by the Community Guide (4 pages, PDF).

American Medical Association:
- AMA releases new medical encyclopedia
  - Synopsis: The AMA announces the release of a new resource available to patients and their families to help them understand and become informed participants in their health care (11/29/06).
- AMA Ethical Opinions:
  - E-2.037 -- Medical Futility in End-of-Life Care
  - E-2.20 -- Withholding or Withdrawing Life-Sustaining Medical Treatment
- AMA Foundation -- "Health Literacy Website - Resources:

Toolkits

Patient safety tip cards

Dying well in America: What is required of physicians?, by Richard Payne, MD
Medem Learning Centers:
- Mission: "We have grouped top articles from the nation's leading medical societies to provide you with an easy-to-navigate learning environment. You can select information on specific diseases and conditions from the drop down menus below. To help you continue with your search, each article within a center contains links out to additional resources in the Medem Medical Library."
Journal of the American Medical Association:

Addressing End-of-Life Treatment Conflicts through Improved Communication, by Audiey C.Kao, MD, PhD (02/2002).

Annals of Internal Medicine:

"National Quality-of-Care Standards in Home-Based Primary Care", by Kristofer L. Smith, MD, MPP, Theresa A. Soriano, MD, MPH, & Jeremy Boal, MD. (Vol. 146, Issue 3, Pages 188-192).
Synopsis: Home-based primary care for homebound seniors is complex, and practice constraints are unique. No quality-of-care standards exist. The objective is to identify process quality indicators that are essential to high-quality, home-based primary care.

Archives of Internal Medicine:

"Toward Shared Decision Making at the End of Life in Intensive Care Units: Opportunities for Improvement", by Douglas B. White, MD, MAS; Clarence H. Braddock III, MD, MPH; Sylvia Bereknyei; & J. Randall Curtis, MD, MPH (Journal of Internal Medicine2007;167:461-467).

Synopsis: "In North America, families generally wish to be involved in end-of-life decisions when the patient cannot participate, yet little is known about the extent to which shared decision making occurs in intensive care units. * * * [Conclusions:] Shared decision making about end-of-life treatment choices was often incomplete, especially among less educated families. Higher levels of shared decision making were associated with greater family satisfaction. Shared decision making may be an important area for quality improvement in intensive care units."

AskMe3
- Mission: The Partnership for Clear Health Communication is a coalition of national organizations that are working together to promote awareness and solutions around the issue of low health literacy and its effect on health outcomes.
Atlanta Journal-Constitution:

"Families chafe at physicians' power to give up life support" -- Courts left to decide who holds patient's fate, by Andria Simmons,published in The Atlanta Journal-Constitution (02/08/08).

Excerpt: From a legal standpoint, being brain-dead is the same as being dead.Before a patient can be declared brain-dead, two doctors must evaluate the patient on two occasions. Dr. Michael Hartman, a neurologist at Emory Eastside Medical Center, routinely removes patients from machines that support organ function after he declares brain death. Hartman said the physicians have to make the tough decisions when families can't. "If you let them take control, they will never let go," Hartman said. "I realize this lack of control families must feel when we go in, but it's part of the job." Hawkins' lawyer, Crongeyer, says that stance is "kind of a scary [thing]." * * *

BMJ (formerly the British Medical Journal):

"Engaging patients in medical decision making:The end is worthwhile, but the means need to be more practical", by Richard L. Kravitz & Joy Melnikow, of the U C Davis Center for Health Services Research in Primary Care, Sacramento, CA, published in BMJ 323:584-585 (09/15/01).

Center for Behavioral and Decision Sciences in Medicine:
- Mission: CBDSM is a joint program of the University of Michigan and the VA Ann Arbor Health System that conducts basic behavioral science research to be applied in health care settings to improve the way people make health care decisions.

Chen, Pauline W., Final Exam: A Surgeon's Reflections on Mortality:

Source: Book published by Alfred W. Knopf (2007, 268 pages).
Op-Ed Article: "The Most-Avoided Conversation in Medicine" , by Pauline W. Chen in the New York Times, (12/26/06).
Article: "Morbidity and Mortality: A Surgeon Under Exam", by Pauline W. Chen, in the Virginia Quarterly Review (Spring, 2007).
Book Review: "Why physicians fight the wisdom of death", by John Vaugh, of the San Francisco Examiner (01/21/07).
Book review: "Doctor Confronts the Human Drama's Inevitable Finale", by William Grimes, of the New York Times (01/10/07).
See also: "Dead Enough?: The Paradox of Brain Death", by Pauline W. Chen, in the Virginia Quarterly Review (Fall, 2005).
See also: Physicians on Mortality & Dying, Part I, by Neil E. Hendershot -- A blog commentary with links to other reviews on the book.

Cooper, Alan, & Jan Swanson, A Physician's Guide To Coping With Death And Dying:

Published by McGill-Queen's Press (2005), 216 pages.
Synopsis: "Education about death and dying has been almost ignored in medical schools. Recently, however, it has become increasingly obvious that the preferences of dying patients are being ignored, leaving many patients to die lonely, scared, and in pain. There is a growing realization that physicians can help dying patients achieve a more peaceful death and increased recognition that good end-of-life care is not just the province of specialized hospice physicians or nurses. In A Physician's Guide to Coping with Death and Dying Jan Swanson and Alan Cooper, a physician and a clinical psychologist with many years of experience, offer insights to help medical students, residents, physicians, nurses, and others become more aware of the different stages in the dying process and learn how to communicate more effectively with patients and their families. They also discuss the ways physicians and other caregivers can learn to reduce their own stress levels and avoid the risk of burnout, allowing them to achieve balance in their lives and be more effective professionally. The authors use case examples and thought-provoking exercises to provide a personal learning experience. [The book] includes an extensive bibliography and a unique web resource section with contacts to many organizations working with patients suffering from life-threatening illnesses."

Dartmouth-Hitchcock's "Center for Shared Decision Making":
- Resources:
  - Decision Aid Library of helpful videotapes, audiotapes, booklets, CD-ROMs, and websites, including one regarding Elder Care / End of Life

Healthcare Decision Guide worksheet to help you work through a decision on your own.

Education for Physicans on End-of-Life Care (EPEC):

Mission: Education for Physicians on End-of-life Care (EPEC) project is designed to educate all physicians on the essential clinical competencies required to provide quality end-of-life care.
Resources: A comprehensive set of training materials is available.

End-of-Life Nursing Education Consortium (ELNEC) Project
End of Life Physician Education Resource Center (EPERC):

Mission: Central repository for educational materials and information about end of life issues designed for physicians and other educators.
Resources: After registration one has full access to the "educational resources" link, including a series of one-page publications called "Fast Facts."
References:

Fagerlin A, Schneider CE. Enough. The failure of the living will. Hastings Center Report. 34(2):30-42, 2004.
Ditto PH, Smucker WD, Danks JH, Jacobson JA, Houts RM, Fagerlin A, Coppola KM, Gready RM. Stability of older adults' preferences for life-sustaining medical treatment. Health Psychology. 22(6):605-615, 2003.
Fagerlin A, Ditto PH, Hawkins NA, Schneider CE, Smucker WD. The use of advance directives in end-of-life decision making: problems and possibilities. American Behavioral Scientist. 46(2):268-283, 2002.
Lockhart LK, Bookwala J, Fagerlin A, Coppola KM, Ditto PH, Danks JH, Smucker WD. Older adults' attitudes toward death: links to perceptions of health and concerns about end-of-life issues. Omega. 43(4):331-347, 2001.
Fagerlin A, Ditto PH, Danks JH, Houts RM, Smucker WD. Projection in surrogate decisions about life-sustaining medical treatments. Health Psychology. 20(3):166-175, 2001.
Bookwala J, Coppola KM, Fagerlin A, Ditto PH, Danks JH, Smucker WD. Gender differences in older adults' preferences for life-sustaining medical treatments and end-of-life values. Death Studies. 25(2):127-19, 2001.
Ditto PH, Danks JH, Smucker WD, Bookwala J, Coppola KM, Dresser R, Fagerlin A, Gready RM, Houts RM, Lockhart LK, Zyzanski S. Advance directives as acts of communication: a randomized controlled trial. Archives of Internal Medicine. 161(3):421-430, 2001.
Smucker WD, Houts RM, Danks JH, Ditto PH, Fagerlin A, Coppola KM. Modal preferences predict elderly patients' life-sustaining treatment choices as well as patients' chosen surrogates do. Medical Decision Making. 20(3):271-280, 2000.

Floridian / St. Petersburg Times:

"A lesson in dying", by John Barry, Deputy Editor (02/04/07).
Synopsis: While medical students dream of saving lives, the University of South Florida tries to make sure those students are also equipped to deal with death.

Foundation for Informed Decision Making:
- Mission: A non-profit organization dedicated to assuring that people understand their choices and have the information they need to make sound decisions affecting their health and well being.
George Washington Institute for Spirituality and Health (GWish):

Mission: Established in 2001, GWish is a university-based organization working toward a more compassionate system of healthcare by restoring the heart and humanity of medicine through research, education, and policy work. GWish focuses on bringing increased attention to the spiritual needs of patients, families, and the healthcare professionals.
Resource: "FICA" test for the spiritual history of healthcare professionals.

Healthcare Republic:

"We must be prepared to talk about death", by Barbara Stuttle, a nurse (02/07/07).
Synopsis: "A friend once told me there are two things nurses don't talk about - sex and death. When it comes to sex we tend to only record whether someone is male or female. Likewise if we look through patient notes, death or dying may be mentioned, but it will often say 'not discussed'."

Hoefler, James M., Managing Death:

Published by Westview Press (Sept, 1997).
Synopsis: The author "discusses 'the medical, legal, ethical, and clinical issues associated with end-of-life decision making on behalf of those who have become irreversibly incompetent before an inevitable (if not imminent) death.' After comprehensively reviewing the opinions of authoritative medical and ethical groups, Hoefler concludes that there is a broad-based consensus about which principles should guide decision making when death approaches. One of these principles, which are a thread running through the book, is the patient's right to refuse treatment. When patients are irreversibly incompetent, surrogates should make decisions based on what they think the patients would have wanted, or else on what they feel would be in the patients' best interest."

Kiernan, Stephen P., Last Rights: Rescuing the End of Life From the Medical System:

320 pages, published by St. Martin’s Press (11/14/06).
See also:"Life Force! Dr. Ira Byock is changing the way people die by changing the way they live", by Stephen Kiernan, appearing in the Boston Globe (01/14/07).

Levine, Carol, Taking Sides: Clashing Views on Controversial Bioethical Issues:

A textbook published by McGraw-Hill, 11th Ed. (04/29/05).
Synopsis: "This debate-style reader is designed to introduce students to controversies in bioethical issues through readings that reflect a variety of viewpoints. Each issue is framed with an issue summary, an issue introduction, and a postscript. The Taking Sides readers feature annotated listings of selected World Wide Web sites. Taking Sides is supported by our student website."

NHS Blog Doctor:

"Living Wills", a posting by Dr. John Crippen, a treating physician within the British National Health Service (02/13/07).
"The Right to Die", a posting (02/12/07).

Patient Decision Aids:
- Mission: The research of the Patient Decision Aids group, of the Ottawa Health Research Institute, helps patients & their health practitioners make "tough" health care decisions that have many options, uncertain outcomes/benefits, and harms which are valued differently.
- Resources:
  - Ottawa Personal Decision Guide -- A tool for any "tough" decision (08/05).
  - Ottawa Decision Aids -- A list of the decision aids developed and evaluated in Ottawa.
  - A to Z Global Inventory of Patient Decision Aids -- A global inventory of available patient decision aids.
  - Resource Links re patient decision aids.
Pennsylvania Academy of Family Physicians:

"Act 148 -- PA’s Confidentiality of HIV-Related Information Act: How It Impacts the Family Physician", by David W. Webber, Esq. (May/June, 2006).

Pennsylvania Medical Society -- "My Family's Wellness":

"My Patient and I . . . ", by Christopher M. Hughes, M.D., Critical Care Specialist, Pittsburgh, PA, & a Trustee of the Society.

Scientific American:

"When to let go? Medicine's top dilemma", by Tom Heneghan (07/16/07
Excerpt: "End-of-life issues top the list of ethical dilemmas hospitals face as medical progress enables doctors to extend an endangered life to the hard-to-determine point where they may actually only be dragging out death.* * * These patients used to just die naturally, but now it might be doctors, hospital ethics committees or courts that decide if and when to let them. The more science discovers, especially about the brain, the harder it can get to make that decision. * * *

Society for Medical Decision Making:
- Mission:"[T]o improve health outcomes through the advancement of proactive systematic approaches to clinical decision making and policy-formation in health care by providing a scholarly forum that connects and educates researchers, providers, policy-makers, and the public."
- Resources: See its Resource Links page here.
Swift, Cynthia, The Whisper:

Published by Infinity Publishing, 54 pages (11/17/06).
Synopsis: "The Whisper brings a well-rounded approach to understanding the natural process of dying. By teaching and sharing experiences in a simple way, readers are better able to embrace this last stage of life. Swift has been a nurse for twenty-six years. She has worked in all areas of nursing from O.B., family practice and trauma to residential hospice. With years of long term care experience, she has been an invited speaker for Health Care Association of Michigan on End of Life Issues and Palliative Care in nursing for health professionals."

Review: "The Whisper -- When a loved one is dying, nurse is a guide", by Lisa Carolin, published in the Ann Arbor (MI) News (02/16/07).

University of North Carolina's Working Group on Risk, Communication & Health Care Decision Making:
- Mission: To promote research on issues of risk communication, patient-provider communication, and shared decision making in health care settings.

ADMINISTRATIVE: Act 169 Courses

HendershotNE — Tue, 29 Jan 2008 20:48:36 CST

Following are courses on Act 169 and its subject matter relating to health care decision-making by individuals or by their agents/representatives. 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.)

ACT 169 COURSES:

Pennsylvania Bar Institute:

"Power of Attorney & Health Care Directives - 2007"

Type: On-site presentations at three locations.
Locations, dates, & times (9:00 am to 12:15 pm):

Monday, March 5, 2007 -- CLE Conference Center, Wanamaker Building, 10th Floor, Suite 1010, Philadelphia, PA
Tuesday, March 13, 2007 -- PBI Conference Center, 5080 Ritter Road, Rossmoyne Exit, Rt. 15, Mechanicsburg, PA
Thursday, March 29, 2007 -- Koppers Building, 9th Floor, 436 Seventh Avenue., Pittsburgh, PA

Topics & Materials -- See: "Act 169 at PBI's POA & HCD Course", posted on the PA Elder, Estate & Fiduciary Law Blog (02/28/07).
Faculty:

Aubrey H. Glover, Esq., Cohen & Grigsby, PC, Pittsburgh (Speaking in Mechanicsburg & Pittsburgh on POAs)
Mary Jo Baum, Esq., Brian R. Price & Associates, Chalfont (Speaking in Philadelphia on POAs)
Neil E. Hendershot, Esq.,, Goldberg Katzman, P.C., Harrisburg (Speaking in Philadelphia & Mechanicsburg on HCDs)
Barbara J. Holland, Esq., Governor's Office--Healthcare Reform, Harrisburg (Speaking in Pittsburgh on HCDs)
Dianne C. Magee, Esq., Grim, Biehn & Thatcher, P.C., Quakertown (Speaking in Philadelphia on POAs)
Harriet F. Withstandley, Esq., Chief Counsel, Pennsylvania Department of Aging, Harrisburg (Speaking in Mechanicsburg & Pittsburgh on HCDs)
Robert B. Wolf, Esq., Tener, Van Kirk, Wolf & Moore, Pittsburgh (Speaking in Pittsburgh on HCDs)

"Personal Health Care Decision Making in Pennsylvania: An Analysis of Act 169"

Date: Jan 16, 2007
Type: Telephone Call-In Course, recorded & now available for replay.
Media:Presentation is available as a CD audio with materials.

Faculty:

Neil E. Hendershot, Esq., Goldberg Katzman, P.C., Harrisburg -- Course Planner (Email: neh@goldbergkatzman.com or HendershotNE@gmail.com)
Barbara A. Holland, Esq., Chief Counsel's Office, Pennsylvania Department of Health, Harrisburg (Email: baholland@state.pa.us)

Harriet F. Withstandley, Esq., Chief Counsel, Pennsylvania Department of Aging, Harrisburg (Email: hwithstand@state.pa.us)
Robert B. Wolf, Esq., Tener, Van Kirk, Wolf & Moore, PC, Pittsburgh (Email: RWolf50@aol.com)

Topics:

Legal Framework Constitutional, Case Law, and Statutory; Overview of Act 169; Living Will changes; New Health Care Powers of Attorney; New Health Care Representative and Health Care Decision-Making; Protections for Providers and Agents; Duties and Process Required of Health Care Providers; New Combined Form HPOA & Living Will; Consistency of Medical Orders Across Care Settings--POLST-Advisory Committee; Criminal Penalties, Licensing & Accountability; & Questions and Answers.

Pennsylvania Medical Society and the Hospital & Healthsystems Association of Pennsylvania:

PMS & HAP have jointly developed a series of educational programs & resources designed to help physicians, other providers, and patients use the new law (Act 169) to improve health care decision making.
Webinar: “The New Advance Directives Law: What You, Your Medical Practice, and Your Hospital Need to Know to Comply”, a one-hour web seminar on January 10, 2007 (12 noon - 1 PM) on the new law and its impact. This webinar is geared toward physicians, hospitals, and other providers.

WEBLINKS: Personal Stories

HendershotNE — Tue, 29 Jan 2008 20:21:15 CST

Following are personal stories about individuals that offer information, commentary, or experiences regarding health care decision-making by individuals or by their agents/representatives. 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.)

Personal Stories:

2007-07-05: "Student's will aids in life or death decision", by Devin Culclasure, posted July 5, 2007, in the Independent Florida Alligator Online.

Excerpt: The friends and family of Henry Crane, a UF chemistry senior, said he was always ready to help people. Now, even on life support, he's still helping.Crane, 21, was cycling on Archer Road near Shands at UF when a car struck him at about 9 a.m. Tuesday. * * * As of Wednesday evening, Shands medical staff was arranging recipients for Crane's organs. Crane's family members said he would be taken off life support early this morning. After the crisis over Terri Schiavo, Crane decided to create a living will at the age of 19. It was a comfort, Crane's mother said, because the family could follow his wishes exactly.

STATUTES: Pennsylvania

HendershotNE — Tue, 14 Aug 2007 17:58:10 CDT

Following are links to certain Pennsylvania laws relating to health care decision making by individuals or by their agents/representatives. 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.)

RELATED PA STATUTES & REGULATIONS:

"Act 148 of 1990" -- Pa. Consolidated Statutes Annotated Title 35, § 7607:

See also: Regulations at Pa. Code, Title 28, Ch. 27.

PA Probate, Estates & Fiduciaries Code -- Official Version:
- "Incapacitated Persons" (re Guardianship) -- Title 20, Chapter 55
- "Powers of Attorney" -- Title 20, Chapter 56
- "Anatomical Gifts" -- Title 20, Chapter 86
Prior, Unofficial (now repealed) Version of Chapter 54 provided by Martin Jr., Thomas E. (Kennett Square, PA), effective until 01/29/07:

"Advance Directive for Health Care" (Living Will) -- Title 20, Chapter 54 (Prior Law, as in effect before January 29, 2007, in PA, but repealed by Act 169)

Prior (now repealed) PA "DNR" Statute, effective until 01/29/07:
- Prior DNR Act from Westlaw
- Prior DNR Regulations from the Pennsylvania Code
- See also: FORMS: Agencies & Departments

LEGISLATIVE MATERIALS: Jt State Govmt Cmn Reports

HendershotNE — Tue, 14 Aug 2007 17:35:52 CDT

Following are links to information provided by the Joint State Government Commision, developed during legislative consideration of Senate Bill 628 (or its predecessor bills) prior to its enactment on November 29, 2006 as Act 169 of 2006, and the adopted legislation in final bill form. These links are provided for informational purposes only. Use them in your own discretion. Act only with the advice of qualified professionals.

(See: Notice on Home page.)

FINAL LEGISLATION & JSGCREPORTS:

Act 169 of 2006, per Senate Bill 628, Printer's No. 2117:

Text format
PDF format

Note: As to SB 628, repealers of current laws are stated on pages 1-15 (in brackets); Act 169's new provisions appear on pages 15-87, with the Senate 's final amendments in PN 2117 shown in strikeouts & capital letters.

Joint State Government Commission Reports:

2002 Report:
- 2002 Summary Report by JSGC
- "Proposed Health Care Decision-Making Provisions Under Chapter 54 of Title 20 of the Pennsylvania Consolidated Statutes" (February, 2002, 76 pages, in PDF format)
1998 Report:
- 1998 Summary Report by JSGC
- "Report of the Subcommittee on Guardianships and Powers of Attorney of the Task Force and Advisory Committee on Decedants' Estates Laws" (November, 1998; 50 pages, in PDF format)
1994 Report:

1994 Report of the Task Force and Advisory Committee on Decedents' Estates Laws -- Recommending, A Health Care Power of Attorney Statute.

BACKGROUND: Updates

HendershotNE — Tue, 19 Jun 2007 21:11:08 CDT

Following are news items or updates related to Act 169 upon health care decision-making by individuals or by their agents/representatives in Pennsylvania. These items & 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.)

UPDATES (Log of Site Additions):

2007-06-18:

Newsweek:

"Patients have a right to make their own medical decisions", by Jane Bryant Quinn (06/25/07).

Excerpt: There's more reason than ever to leave written instructions about the medical care you want if you're unable to speak for yourself. In the wake of the Terri Schiavo case, in which her husband and parents fought over whether to remove her feeding tubes, right-to-life activists have been working on state legislatures. Their objective: requiring doctors and families to keep life support going for patients in a permanently comatose state. If that's not what you want, you need to make it clear.

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.

Spirit India:

"New guidelines for communicating end-of-life issues in Australia" (06/18/07).

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."

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.
2007-06-18:
Newsweek:

"Patients have a right to make their own medical decisions", by Jane Bryant Quinn (06/25/07).

Excerpt: There's more reason than ever to leave written instructions about the medical care you want if you're unable to speak for yourself. In the wake of the Terri Schiavo case, in which her husband and parents fought over whether to remove her feeding tubes, right-to-life activists have been working on state legislatures. Their objective: requiring doctors and families to keep life support going for patients in a permanently comatose state. If that's not what you want, you need to make it clear.

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.

Spirit India:

"New guidelines for communicating end-of-life issues in Australia" (06/18/07).

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."

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.

WEBLINKS: Law & Government

HendershotNE — Mon, 18 Jun 2007 23:22:13 CDT

Following are links to government resources that offer information, commentary, or experiences regarding health care decision-making by individuals or by their agents/representatives. 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.)

LAW & GOVERNMENT:

Centers for Medicare and Medicaid Services (CMS)

Dickinson School of Law - Penn State -- Elder Law Clinic Resources:

Law and Aging Guide for Pennsylvania:
- Synopsis: The Law and Aging Guide is a comprehensive listing of the state-wide resources available to help older persons with law-related issues. Published by the American Bar Association Commission on Law and Aging, the Guide includes important contact numbers and addresses for legal assistance providers and other law-related services for the elderly.
Law for Seniors:

Type: A "senior issues" web portal in Arizona that is a program of the Arizona Foundation for Legal Services and Education with support from the Arizona Supreme Court and State Bar of Arizona.

Topics: Care Management; Caregivers; Consumer Scams; Death of Relative; Debt Management; Divorce & Remarriage; Elder Abuse; Finances; Health Care; Living Choices; Personal Planning; Public Assistance; Senior Resources/Links; & Working.

National Association of Area Agencies on Aging
National Association of State Units on Aging
National Elder Law Network:
- Purpose: Since 1995, the NELN has been a source of dependable information on legal issues for seniors, their families, & advocates.
- Topics: Abuse and Neglect of Elders; Advanced Directives / Living Wills; Alzheimers; Care Givers and Care Giving; Consumer Rights and Issues ; Cultural Issues; Disability Issues; Discrimination; Dispute Resolution; Driving and Drivers Licenses; Elder Law Practice; Employment; Estates - Planning and Wills; Ethical Issues; Fraud; Funerals; Grandparents; Guardianship / Conservatorship; Health Care; Housing ; Insurance; Medicaid; Medicare; Mental Health; Nursing Homes; Organ / Body Donation; Pets; Physician-Assisted Suicide; Prisoners; Retirement; Social Security and SSI; Substance Abuse; Taxation; Trusts; Veterans Benefits.

National Guardianship Association, Inc.:

Mission: "[P]rovide educational training and networking opportunities for guardians and about guardianship; to promote highest levels of values, standards and ethics; and to ensure a nationally recognized standard of excellence."
Resources: General explanations, policies, references, & ethical statements about guardianship, including:

Guardianship/Conservationship -- An Overview

National Senior Citizen Law Center
Newsweek:

"Patients have a right to make their own medical decisions", by Jane Bryant Quinn (06/25/07).

Excerpt: There's more reason than ever to leave written instructions about the medical care you want if you're unable to speak for yourself. In the wake of the Terri Schiavo case, in which her husband and parents fought over whether to remove her feeding tubes, right-to-life activists have been working on state legislatures. Their objective: requiring doctors and families to keep life support going for patients in a permanently comatose state. If that's not what you want, you need to make it clear.

President's Council on Bioethics:

"Taking Care: Ethical Caregiving in our Aging Society" , (Sepember, 2005).

Report:

Full Document (PDF)

Full Document (HTML)

Topics:

Article: "Lingering Longer: Who Will Care?", by Leon R. Kass, in the Washington Post (09/29/2005).

"After the Life Cycle: The Moral Challenges of Later Life" , by Thomas Cole (June, 2004).
"Caregiving and the American Individual", by Peter Lawler (September, 2004).
"Treatment Decisions for Dementia Patients: The Search for Normative Boundaries", by Rebecca Dresser (December, 2004).
"When Persons with Dementia Get Sick: The Care-Giver's Dilemma", by Eric Cohen (September, 2004).

U.S. Administration on Aging

WEBLINKS: Bereavement & Coping

HendershotNE — Mon, 18 Jun 2007 21:51:37 CDT

Following are bereavement or coping resources that offer information, commentary, or experiences regarding the effects of health care decisions made & death. 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.)

BEREAVEMENT & COPING:

AARP (American Association of Retired Persons):

"Helping Grandchildren Deal with Grief" - Grandparents can’t protect their grandchildren from events that cause pain and grief. But they can help their grandchild cope with loss.

Adult Sibling Grief
"Art of Condolence":

Posted by St. Olaf College, from a "Book Review of the Art of Condolence," by P. V. Johnson, Fall 1991, in Caregivers Quarterly, 6 (3), 3-4.
See also: "Grief Tips-Help for Those Who Mourn", by James E. Miller.

Bereaved Parents of the USA
Beyond Indigo:

Mission: A topic & community site, maintained by a commercial company, with the byline "Changing the way you feel about grief & loss".
Synopsis: "The goal of this company is to provide grief support, products and services to individuals and companies who assist people who are grieving. Beyond Indigo is listed in Forbes Best of the Web for the 6th consecutive year for grief support message boards! Beyond Indigo, is the web's leading source of information on grief, grieving, death and dying. Beyond Indigo offers detailed and heartfelt support and well-managed information."

Brooke, Jill, "Don't Let Death Ruin Your Life: A Practical Guide to Reclaiming Happiness After the Death of a Loved One":

Published by Dutton Adult (2001), 288 pages.
Synopsis: Former CNN correspondent Brooke--who lost her father at 16 and later an unborn child--has interviewed hundreds of people about their loss of loved ones for this journalistic compendium of ways to transform grief into healing. Though not as deep or authoritative as other books on grieving, this one covers more ground. Emphasizing the futility and harmfulness of shutting out grief, Brooke suggests ways to remember and memorialize the departed. Women often find it easier to grieve than men, she notes, while children reprocess loss as they develop cognitively. Acknowledging that the path of grief is variable, she observes that only some friends turn out to be reliable sources of support; the Internet and journals can be useful resources, as are physical activity and therapy. Brooke advises those who are grieving to start a family genealogy, suggests strategies for honoring a deceased spouse in a new marriage, and proposes exercises for helping kids foster positive memories."

Caring Connections:
- Grief
Compassionate Friends:

Mission:"[A}ssist families toward the positive resolution of grieffollowing the death of a child of any age and to provide informationto help others be supportive. [A] national nonprofit,self-help support organization that offers friendship, understanding, and hope to bereaved parents, grandparents and siblings. There is no religiousaffiliation and there are no membership dues or fees."

Continuum Health Partners & StopPain:

Care of the Family

Deits, Robert, Life After Loss: A Practical Guide to Renewing Your Life After Experiencing Major Loss:

Published by Da Capo Press (2004), 256 pages.
Synopsis: "Loss can be overwhelming, and recovery sometimes seems terribly daunting, if not impossible. * * * [T]he only way past grief is through it. In this newly revised edition of Life after Loss, Deits offers sound guidance for navigating the uncertain terrain of grief. With practical and compassionate advice, personal stories, and helpful exercises, Life after Loss is not just about understanding grief -- it's about doing something about it."

Didion, Joan, The Year of Magical Thinking (2005):

Synoposis: This book "is an account of the year following the death of the author's husband John Gregory Dunne (1932-2003). Published by Knopf in October 2005, the book was immediately acclaimed as a classic in the genre of mourning literature. It won the National Book Award in November 2005. The narrative structure of the book parallels the mental re-living of a tragic event that is common to many experiences of grief. * * * Didion also incorporates medical and psychological research on grief and illness into the book."
Book Reviews: "The Black Album", by John Leonard, in the New York Review of Books (Volume 52, Number 16; 10/20/05); and "The Long Goodbye", by Andrew O'Hehir, published by Salon Media Group (10/18/05) -- "Joan Didion has opened her veins on the page, as we pretty much knew she would. Her only choices, given what has befallen her, were to die herself or to write about it."

Dougy Center for Grieving Children
- Mission: "The Dougy Center was the first center in the United States to provide peer support groups for grieving children. * * * [W]e provide support and training locally, nationally and internationally to individuals and organizations seeking to assist children in grief."
- Resources: Materials, activities for children under age 12, information for parents on helping their children.
Forgotten Grief:

Mission: This is an informational personal resource about the death of children, including infants. Most of what is on the site represents 25 years' of the work of Dr. Elizabeth K. Best, and is generally free.
Excerpt: "Of all the experienceswhich most try the hearts and souls of parents, the most difficult by far is the loss of a Child. This is complicated further when the death occurs when a birth instead is expected: Sorrow and Grief quickly replace Joy and Expectation. This complex and delicate grief at the death of an infant is often obscured by family, friends and society leaving parents bewildered and hurting with little recourse. Trusted relationships are tried and sometimes severed, and even persons of deep faith struggle for survival in their relationship with God."

Grief and Bereavement: In Loving Memory
Healing the Grieving Heart: "The Grief Blog"
Help Guide on Coping with Loss
Highmark Caring Place:
- Mission: "A center for grieving children, adolescents and their families."
- Synopsis: "The Highmark Caring Place takes its inspiration from Fred Rogers, who held that sharing the difficult things in life is the necessary first step in managing them. We work to provide a safe place, a caring and supportive atmosphere, and a strong and accepting adult presence. Within this atmosphere, these children and their families can discuss, and ultimately manage their grief, and thereby attain optimal health and maximize their potentials."
Mayo Clinic:
- Terminal Illness: Interacting with a Terminally Ill Loved One
Neeld, Elizabeth Harper (Ph.D.), Seven Choices:

Published by Warner Books (2003), 480 pages.

Synopsis: "Everyone experiences grief, but few books offer real help with the debilitating emotions of bereavement. Now, an internationally respected authority on personal change maps the terrain between life as it was and life as it can be. Readers can move at their own pace through the seven distinct phases of loss and can work towards a stronger, more balanced self. The author's own story of the loss of a young husband, combined with the tales of dozens of individuals, and the most recent research on coping with loss, helps readers to become happier, healthier, and wiser beings."

Pennsylvania Funeral Directors Association:
- Grief Resources

VISUALS: Movies

HendershotNE — Mon, 11 Jun 2007 20:16:42 CDT

Following are movies & documentaries that offer information, commentary, or experiences regarding health care decision-making, dying, or death. 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.)

MOVIES & DOCUMENTARIES:

Always (1989):
- Synopsis: "Pete is a pilot who drops water on forest fires at very low heights. His intended Dorinda is also a pilot who doubles as a radio controller for the pilots who do this work. Pete always takes chances, confident that his skill will bring him through. One day it doesn't and he is killed. He finds himself returning as an invisible ghost who's presence is barely felt giving advice to his successor. Pete then finds that his successor is also falling in love with Dorinda."
Away From Her (2006):

Synopsis: "Fiona and Grant are an Ontario couple who have been married for over 40 years. Now, in the oncoming twilight of their years, they are forced to face the fact that Fiona's "forgetfulness" actually is Alzheimer's Disease. After Fiona wanders away and is found after being lost, they agree she must go into a nursing home. For the first time in the five decades their relationship has spanned, they are forced to undergo a long-time separation since the nursing home has a "no-vistors" policy for the first 30 days of a patient's stay, so they can adjust to their new surroundings. When Grant visits Fiona after the orientation period, he is devastated to find out that not only can has she seemingly forgotten him, Fiona has transferred her affections to another man. The other man is Aubrey, a wheel chair-bound mute who also is a patient at the nursing home. As the distance between husband and wife grows, Grant must draw upon his love for Fiona to perform an act of self-sacrifice in order to ensure her happiness."

Chambre verte, La (The Green Room) (1978):

Synopsis: A film by Francois Truffaut -- In a little French town at the end of the twenties, Julien Davenne works as a journalist while mourning his wife, Julie, who died a decade ago. He collected all Julie's objects in a green room. When a fire destroys the room, he & a woman renovate a little chapel, devoting it to Julie & others dead from war. "The haunting tragedy of the story lies in the characters' motives for the shrine. Cecilia envisions the memorial as a means of achieving healing and closure. To Julien, it is the culmination of his dedicated service to the memory of the dead. Having completed his life's work, his reason for existence is lost. The Green Room is a touching, cerebral film about grief, guilt, and survival."

Exit: The Right to Die (2006):
- Synopsis: Fernand Melgar's "Exit" is a new documentary that deals with the most mundane and yet most emotionally fraught of subjects: death. Eventually, none of us escapes the ordeal of a parent or friend's death; inevitably we wonder if fate will be kind to us, or if we will endure a painful and lingering demise. In Switzerland, Exit, a membership organization, facilitates a dignified, swift and pain-free end to the lives of members who are terminal. The film follows the activities of volunteer "escorts" responsible for visiting clients. We hear their conversations, watch them prepare the lethal solution, and in one instance oversee its administration. The humanity and decency with which all this is conducted leaves little wonder that Exit has a long waiting list for membership. Amazingly, for more than 20 years Switzerland has been the only nation in the world to allow legally assisted suicide by groups such as this one. As anyone who has ever raised the subject knows, in the United States it remains one of our last taboos - despite the fact that a majority of Americans support some form of "the right to die." "Exit" makes apparent that the freedom to end one's life is one that every society owes its citizens.
- Review: Leaving This Mortal Coil With a Plan and a Departure Date, by Stephen Holden, in New York Times (Oct. 25, 2006).
Ghost (1990):
- Synopsis: "Sam and Molly are a very happy couple and deeply in love. Walking back to their new apartment after a night out at the theatre, they encounter a thief in a dark alley, and Sam is murdered. He finds himself trapped as a ghost and realises that his death was no accident. He must warn Molly about the danger that she is in. But as a ghost he can not be seen or heard by the living, and so he tries to communicate with Molly through Oda Mae Brown, a psychic who didn't even realise that her powers were real."
Hospice Patients Alliance:
- List of recommended movies involving end-of-life issues.
Igby Goes Down (2002):

Synopsis: "[This movie] is a personal tale about a 17 year old misfit boy who copes with his mother's cancer and his father's insanity by pursuing relationships with older women. Truly an intellectual, Igby is a modern day Holden Caulfield, and the world he lives in is far removed from the high standards of expectation he holds for it."

In the Matter of Karen Ann Quinlan (1977):
- Synopsis: Based on a true case, this tells the story of two parents in New Jersey whose daughter has lapsed into a coma from which doctors say she will never recover. The parents must decide whether to keep her alive on life support systems, or to disconnect them and let her die with some dignity left.

Intimate Universe: The Human Body - The End of Life" (1998):
- Synopsis: Using custom-designed computer graphics, the major life events of birth, childhood, teen years, young adulthood, maturity, old age, and death are covered in the Intimate Universe series. This final installment, Intimate Universe: The Human Body - The End of Life, provides a look into the death of a man who has inoperable stomach cancer, and offers a moving tribute to the last days of a life.
Last Orders (2001):

Synopsis: "Jack Dodd was a London butcher who enjoyed a pint with his mates for over 50 years. When he died, he died as he lived, with a smile on his face watching a horse race on which he had bet, with borrowed money. But before he died he had a final request, 'Last Orders', that his ashes be scattered in the sea at Margate. The movie follows his mates, Ray, Lenny and Vic and his foster son Vince as they journey to the sea with the ashes. Along the way, the threads of their lives, their loves and their disappointments are woven together in their memories of Jack and his wife Amy "
Note: Starred Michael Caine.

[A] Lion in the House (2006):
- Synopsis: "A Lion in the House follows the stories of five exceptional children and their families as they battle pediatric cancer. From the trauma of diagnosis to the physical toll of treatment, this series documents the stresses that can tear a family apart as well as the courage of children facing the possibility of death with honesty, dignity and humor. As the film compresses six years into one narrative, it puts viewers in the shoes of parents, physicians, nurses, siblings, grandparents and social workers who struggle to defeat an indiscriminate and predatory disease."
Love Story (1970):
- Synopsis: "Harvard Law student/hockey jock (Oliver Barrett IV) meets Radcliffe music wonk (Jennifer Cavalleri), and the couple soon enter into a relationship. When the couple decide to get married, Oliver's father (Oliver Barrett III) threatens to disinherit him from the family will, leaving Oliver and Jennifer to start their marriage at rock-bottom. Jennifer and her dad (Phil Cavalleri) do what they can to bring father and son back together, but the two prefer to remain at war with one another. Years go by, and the young couple attempt to have children, only to discover that she is malfunctioning."
Lorenzo's Oil (1992):
- Synopsis: "For young Lorenzo, the future seems to be inevitable deterioration and death, due to the rare brain disease, ALD. Lorenzo's parents however, are fighters, and against overwhelming odds, they strive to achieve the impossible - a medical breakthrough which can help their son."
Million Dollar Baby (2004):

Synopisis: "Two main characters come to discover that they share a common spirit that transcends the pain and loss of their pasts, and find in each other a sense of family they lost long ago. What they don't know is that soon they will both face a battle that's going to demand more heart and courage than any they've ever known."

Patch Adams (1998):

Synopsis: Fact-based story of Hunter "Patch" Adams (Robin Williams), the founder of the Gesundheit Clinic, a clinic which deals with their patients with humor and pathos. The film starts with Hunter admitting himself as a patient in a mental ward. While there, he found he enjoyed helping the other patients and found the staff to be cold and separative from the patients. Vowing to change things, he releases himself from the hospital and headed to the Virginia Medical College. His unorthodox methods cast him up against many of the doctors and deans of the university, despite him getting some of the highest grades in his class. Recognizing that many poor people were not being treated, as a student he formed the Gesundheit Clinic to aid those who were not getting proper treatment at the hospital. However, this brought him up before the Medical Review Board for practicing without a license.

Philadelphia (1993):
- Synopsis: "Andrew Beckett, a gay lawyer infected with AIDS, is fired from his conservative law firm in fear that they might contract AIDS from him. After Andrew is fired, in a last attempt for peace, he sues his former law firm with the help of a homophobic lawyer, Joe Miller. During the court battle, Miller sees that Beckett is no different than anyone else on the gritty streets of the city of brotherly love, sheds his homophobia and helps Beckett with his case before AIDS overcomes him."

Shadow Box (1980):
- Synopsis: "Moving in a slow, deliberate fashion, the film concerns three terminally ill people. Their stories intertwine as the unfortunate spend their last days with their families in a cottage-complex hospice. Christopher Plummer and Joanne Woodward play a pair of ex-spouses, whose chances for reconciliation are strained somewhat by the presence of Plummer's male lover Ben Masters. James Broderick plays a blue-collar worker, sharing precious final moments with wife Valerie Harper. And elderly Sylvia Sidney comes to terms with her daughter Melinda Dillon. Based on the Pulitzer Prize-winning play by Michael Cristofer, Shadow Box was co-produced by Paul Newman and Joanne Woodward's daughter Susan Kendall Newman. The Emmy-nominated drama was first telecast December 28, 1980."
Steel Magnolias (1989):

Synopsis: The title refers to those seemingly frail Southern belles who survive any and all deprivations through whims of iron. "The action centers around Truvy's beauty parlor and some women who regularly gather there. The drama begins on the morning of Shelby's wedding to Jackson and covers events over the next few years, including Shelby's decision to have a child despite having diabetes and the complications that result from the decision."

Tous les matins du monde (All the Mornings in the World) (1991):

Synopsis: "It's late 17th century. The viola da gamba player Monsieur de Sainte Colombe comes home to find that his wife died while he was away. In his grief he builds a small house in his garden into which he moves to dedicate his life to music and his two young daughters, Madeleine and Toinette, avoiding the outside world. Rumor about him and his music is widespread, and even reaches to the court of Louis XIV, who wants him at his court in Lully's orchestra, but Monsieur de Sainte Colombe refuses. One day a young man, Marin Marais, comes to see him with a request, he wants to be taught how to play the viola."

Tuesdays With Morrie (1999):

Snynopsis: "Mitch became caught up with his career as a sport commentator and journalist. He ignored his girlfriend and did not make time to do things in life that are of the most value to a human being. Morrie was one of Mitch's professors in college and a famous scholar. One day Mitch was watching television and saw Morrie giving an interview stating that he is dying of Lou Gehrig disease or ALS."
See also: "Tuesdays With Morrie" Staged in Malvern, PA, posted by Neil E. Hendershot, Esq. (02/13/07).

Two Weeks (2007):

Synopsis: "Two-time Academy Award winner Sally Field and Ben Chaplin head a terrific acting ensemble in this bittersweet comedy. Four siblings rush home to say a last goodbye to their very sick mother. When she hangs on, they find themselves trapped together -- for two weeks. Through laughter and tears, they come to terms with the tragedies we all must face, and rediscover the joy we find in each other. The film chronicles the Bergmans' alternately heartbreaking and hilarious struggles, intercut with Anita's own reflections on her life and her family. What happens to a family when the one person who holds it together can't hold on anymore?"
Cast: Sally Field, Ben Chaplin, Tom Cavanagh, Julianne Nicholson, & Clea Duvall.
See also: PA Elder, Estate & Fiduciary Law Blog posting "Two Weeks Movie Released" (06/12/07).

[The] Ultimate Gift (2006):

Synopsis: "Based on the best-selling book "The Ultimate Gift" by Jim Stovall, the story sends trust fund baby Jason Stevens on an improbable journey of discovery, having to answer the ultimate question: "What is the relationship between wealth and happiness?" Jason had a very simple relationship with his impossibly wealthy Grandfather, Howard "Red" Stevens. He hated him. No heart-to-heart talks, no warm fuzzies, just cold hard cash. So of course he figured that when Red died, the whole "reading of the will" thing would be another simple cash transaction, that his Grandfather's money would allow him to continue living in the lifestyle to which he had become accustomed. But what Red left him was anything but simple. Red instead devised a plan for Jason to experience a crash course on life. Twelve tasks, which Red calls "gifts," each challenging Jason in an improbable way, the accumulation of which would change him forever."
Note: For commentary & review summaries, see "The Ultimate Gift" (03/12/07), posted on the PA Elder, Estate & Fiduciary Law Blog.

What Dreams May Come (1998):
- Synopsis: "Chris Neilson dies to find himself in a heaven more amazing than he could have ever dreamed of. There is one thing missing: his wife. After he dies, his wife, Annie killed herself and went to hell. Chris decides to risk eternity in hades for the small chance that he will be able to bring her back to heaven."

COMMENTARIES: Act 169 of 2006

HendershotNE — Mon, 23 Apr 2007 17:38:13 CDT

Following are links to updates or commentaries published regarding Act 169 of 2006.These links are provided for informational purposes only. Use them in your own discretion. Act only with the advice of qualified professionals.

(See: Notice on Home page.)

COMMENTARIES ON ACT 169 OF 2006:

Beaver County (PA) Times:

"Preparing for the end", by Bob Bauder, Times Staff (01/25/07).

Centre Daily Times (State College, PA):

"No living will? Pa. law will decide who makes decisions for you", by Jennifer C. Yates (Associated Press, 01/28/07).
"Who Should Be Making End-of-Life Decisions?", by Nancy Kranich of the Public Issues Forums of Centre County Steering Committee (01/29/07).

Synopsis: "No longer are life- and-death decisions made just by individuals and their families. Doctors, lawyers, insurance companies, politicians and judges have stepped into this highly personal arena. As a society, we share an interest in determining what options are available, how they are accessed, and what rules are followed."

Citizen's Voice (Wilkes-Barre, PA):

"Law addresses end-of-life care", by Heidi Ruckno (01/29/07).

Intelligencer Journal (Lancaster, PA):

"New Pennsylvania living will legislation", by Patti S. Spencer (01/22/07).

Marshall, Jeffrey A.:

"Understanding Act 169: A Professional's Guide to Living Wills and Advance Health Care Powers of Attorney in Pennsylvania"

Newswise:

"New Pennsylvania Law Defines End-of-life Care Decision Making Process", from a press release issued by the Pennsylvania Medical Society (01/22/07).

Op-Ed News:

"Only Humans Should Suffer: The End-of-Life Double Standard", by Mary Shaw (01/30/07).

Penn State Daily Collegian(State College, PA):

"New law grants spouses priority", by Emma Straley (02/06/07).
Synopsis: "While end-of-life care is not a pressing issue for most Penn State students, a new Pennsylvania law on living wills will affect anyone who is suddenly unable to make life decisions. * * * [S]tudents should give thought to exactly what they want concerning their end-of-life decisions so problems don't arise."

Pennsylvania Medical Society:
- "My Patient and I . . . ", by Christopher M. Hughes, M.D., Critical Care Specialist, Pittsburgh, PA, & a Trustee of the Society.
- "New Legislation a Major Step Forward for Advance Health Care Directives and Health Care Decision-Making for Incompetent Patients" (11/30/06)
- "Quick Facts on Act 169" (11/30/06), including:
Post-Gazette (Pittsburgh, PA):

"End-of-life decisions require detailed plans", by Jan Warner & Jan Collins (02/18/07).

"Advocates Praise PA. End-of-Life Law, But Want More Protections", by Gary Rotstein (12/04/06).
"Everyone Dies: Pennsylvania's Act 169 will help prepare us for the last 'measure of our days'", by Clarke Thomas, Senior Editor (01/27/07) -- "[A]s someone now in his 80s, I feel I can raise the end-of-life issue. And, fortunately, a new law, Act 169, passed by the Pennsylvania Legislature and taking effect Monday can be a help."

Public Opinion(Chambersburg, PA):

"Our view: Make a living will before it's too late", by Kathy Leedy, written on behalf of Public Opinion's editorial board (01/30/07).

Sentinel(Carlisle, PA):

"End of life law goes into effect today, prompting tough decisions", by John Hilton (01/29/07).

Sun-Gazette(Williamsport, PA):

"State law that takes effect today defines who makes decisions for the terminally ill", by Mike Reuther (01/30/07).

Times-Tribune (Scranton/Wilkes-Barre, PA):

"New law guides medical decisions", by David Falcheck (04/22/2007).

Tribune-Review (Pittsburgh, PA):

"Easing the way for hard choices", by Allison M. Heinrichs (01/29/07).

WEBLINKS: Cultures & Customs

HendershotNE — Fri, 30 Mar 2007 16:44:13 CDT

Following are various resources on cultures & customs that offer information, commentary, or experiences regarding health care decision-making by individuals or by their agents/representatives. 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.)

CULTURES & CUSTOMS:

American Psychological Association:

End-of-Life Care: The Latino Culture
End-of-Life Care: The Vietnamese Culture
United Press International:

"Homeless have end-of-life care worries" (03/29/07) -- Synopsis: A U.S. study published in the April, 2007 issue of the Journal of General Internal Medicine made two general findings: Homeless participants worried about dying in a place where no one would find them & dying in anonymity, with no memorialization; and they expressed fear about not being cared for compassionately or adequately by healthcare providers because of their homelessness.

Washington Post:

"At the End of Life, a Racial Divide Minorities Are More Likely to Want Aggressive Care, Studies Show", by Rob Stein (Page A01, 03/12/07)

Excerpt: "After lives in which they often struggle to get medical care, African Americans and other minorities are more likely than whites to want, and get, more aggressive care as death nears and are less likely to use hospice and palliative-care services to ease their suffering, according to a large body of research and leading experts. As a result, they are more likely to experience more medicalized deaths, dying more frequently in the hospital, in pain, on ventilators and with feeding tubes -- often after being resuscitated or getting extra rounds of chemotherapy, dialysis or other care, studies show."
See also: Daily Health Policy Report, posted by the Kaiser Family Foundation, entitled "Minorities More Likely Than Whites To Seek Aggressive End-of-Life Care, Studies Find" (03/12/07).

WEBLINKS: Funerals & Remains

HendershotNE — Fri, 30 Mar 2007 10:48:56 CDT

Following are resources that offer information, commentary, or experiences about funerals & memorials, which are important aspects of personal end-of-life decision-making by individuals or by their agents/representatives. 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.)

FUNERALS & REMAINS:

AARP (American Association of Retired Persons):

Funeral Arrangements and Memorial Services

American Medical Association:

Autopsy: Life's Final Chapter

ASU (Arizona State University) Web Devil:

"Details of Death -- Not all cultures fear the Reaper like we do", by Nicole Stewart (03/29/07) -- Synopis: "Scared of death? Not all cultures see death as such a negative. [Professor] Christopher Carr encourages you to “explore the positive” side of your demise."

Autopsy (Post Mortem Examination):

Posted by Medicine.Net

Baltimore Magazine:

"Death Becomes Them" , by Jessica Leshnoff -- "A local mortuary science program trains students for one job that will never run out of customers." (03/02/07).

Catholic Telegraph (Cincinnati, OH):

"Catholics and cremation: Times have changed", by Tricia Hempel (03/02/07).
Excerpt: "For centuries, cremation was forbidden for Catholics. But in 1963, that changed, and Catholics could opt for cremation if the body was still present for a funeral Mass and cremation occurred later, or if a Memorial Mass was celebrated without the body. Then, in 1997, the American bishops received an indult that permitted the presence of cremated remains at the funeral Mass, and today, cremation is quickly becoming a preferred option for many Catholics, particularly those with a mind toward ecology and even economy."

Health Day News:

"Implanted Heart Devices Should Be Recyled After Death, Researchers Say", by Amanda Gardner (11/12/06), posted by US HHS.

Jewish Funeral and Mourning Customs
- by Sharon Ann Soudakoff
National Post (Canada):

"Grieving goes digital as funeral webcasts debut", by Mary Vallis & Katie Rook (03/29/07) -- Synopsis: "The Internet is changing the way people grieve. More and more funeral homes are offering live Webcasts so people can mourn their loved ones without leaving home. The concept has found favour with far-flung relatives and families where there are acrimonious feelings that makes it difficult for everyone to grieve in the same room together."

Pennsylvania Funeral Directors Association:

Procedures Following Death:

Posted by Oracle Education Foundation's Think Quest.

VISUALS: Public Broadcasting System

HendershotNE — Mon, 12 Mar 2007 18:16:45 CDT

Following are links to National Public Radio resources that offer information, commentary, or experiences regarding health care decision-making by individuals or by their agents/representatives. 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.)

PUBLIC BROADCASTING SYSTEM PRESENTATIONS:

"Almost Home"(2005):

Synopsis:"Almost Home is a feature-length documentary that follows the daily lives of residents and staff at Saint John’s On The Lake, a retirement community in Milwaukee, Wisconsin. Through a memorable cast of characters, candid interviews and true-life drama, Almost Home presents real stories of aging — frightening, tender, funny, surprising and honest.

"And Thou Shalt Honor" (2005):

Synopsis: Presented in celebration of the 40th anniversary of the signing of the Older Americans Act in 1965, this documentary focuses on the plight of America’s family caregivers. Interviews with Washington lawmakers press for answers on issues that have daily impact on family caregivers & their loved ones, including: Medicaid & Medicare reform, universal healthcare, long-term care insurance, direct pay-to-family caregivers, & tax incentives to prepare the nation for longevity.

"Before I Die: Medical and Personal Choices" (1997):

Synopsis: "The program explores the medical, ethical, and social issues surrounding end-of-life care in America today. This Web companion piece features original reporting (real life stories & sidebars)."
Resources: The online resources, list of articles, and bibliography of books found here all appear current only to 1997; however, they remains useful.

"[A] Death in the Family":

Synopsis: A Masterpiece Theatre (American Collection) adaptation of James Agee's Pulitzer Prize-winning classic about a man's death and its impact on his family. Set in 1915, the film recreates Agee's small, painstakingly-drawn world of domestic happiness and shows how quickly it can be destroyed.

"[A] Family Undertaking" (2004):

Synopsis: "Elizabeth Westrate's "A Family Undertaking" uncovers a growing social trend: the home funeral movement. More often, Americans are choosing to do it themselves when it comes to burying loved ones and easing their own grief. Far from being a radical innovation, however, keeping funeral rites in the family or among friends is exactly how death was handled for most of pre-twentieth century America."

"Health Care Crisis: Who's At Risk?" (2000):

Synopsis: A documentary examing issues determining where the U. S. healthcare system was headed into the future, from the perspectives of patients, professionals, & voters.
Resources: Interviews, a transcript, & student workbooks, among other materials.

"On Our Own Terms: Moyers on Dying" (2000):
- Resources:
"Whose Death Is It Anyway?" (to be broadcast Spring, 2007):

Synopsis: "Whose Death Is It Anyway? emphasizes the importance of personal involvement in decisions about one's care at the end of life. Highlighting the types of treatment many people receive, it realistically explores the difficulties surrounding end-of-life decision making through five documentary segments that feature families sharing their own discussions and experiences."
Resources: The Program offers web resources & examines: Patients' Legal Rights; Family Conflicts About End-of-Life Decisions; Advance Directives; Palliative (Comfort) Care; & Dying at Home, in Hospital, or with Hospice Care.

"With Eyes Open"(2000):

Synopsis: Produced by KQED television in San Francisco and aired throughout the country in September 2000 as a companion to "On Our Own Terms." The four programs discuss caregiving, grief, difficult decisions and what may lie beyond death.

REFERENCES: Media Articles

HendershotNE — Fri, 09 Mar 2007 20:03:31 CST

Following are articles posted online that offer information, commentary, or experiences regarding health care decision-making by individuals or by their agents/representatives. 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.)

MEDIA ARTICLES:

Forbes:

"End-of-Life Communication Helps Families Cope With Loss" (01/31/07).

Sample: "When doctors spent 10 minutes more than usual listening to the families of people dying in the intensive care unit and provided them with a brochure on bereavement, those family members were far less likely to suffer from stress, anxiety or depression after the death of their loved one."

HealthDay News:

"Choice of Health Care 'Proxy' Often Surprising", by Alan Mozes (08/21/06).

Synopsis: "A third of married people would choose someone other than spouse to decide their care, study found." * * * " When your health declines so badly that you can no longer speak for yourself and choose your care, who should speak for you?Ideally, experts say, that's when a legally designated health-care "proxy" would take over. But, according to a new study, the choice of a proxy is often unexpected."

Knight-Ridder: "Finding Our Way" Series:

Synopsis: A series of fifteen articles published in the fall of 2001, by Knight-Ridder Tribune. The series is a short course on "death and dying", including practical advice, resources, and personal stories.
Resources: See the series on its website, containing related links.

Lawyers USA:
- "Longer Life Spans Alter Estate Planning", by Dick Dahl (01/01/07).
  - Synopsis: As the life expectancy for Americans lengthens and the country grows grayer, trusts and estates lawyers say they're seeing the demographic impact in the world of estate planning.
Los Angeles Times:

"Life on her terms" -- by Susan Brink (02/05/07).
Synopsis: "Like Art Buchwald, more terminally ill patients seem willing to forgo medical intervention. 'Enough is enough,' they say."

Morning Call (Allentown, PA):

"End-of-life care concerns should prompt discussions with doctors and families" (02/08/07).

Excerpt: "There is a heightened public awareness in end-of-life care. Do you have a living will or other instructions should you become incapacitated because of injury, illness or age? Have you discussed your wishes for end-of-life care with your doctor and family? Are you confident that your written wishes as a patient — such as orders not to resuscitate — will be transferred to a hospice or nursing home, and then back to a hospital?"

New York Times:

"As a Life Ebbs, the Ultimate Family Quarrel", by Pam Belluck (10/28/04), as reposted by Parting Wishes

News-Press (Southwestern Florida):

"People should have freedom to take charge of their death: Humans deserve as much dignity as Barbaro" -- Guest Opinion by Joseph Gormley, retired teacher (02/05/07).

Philadelphia Inquirer:

"Let us not forsake the dying, says Pa. report", by Michael Vitez (02/05/07).

Synopsis: "Death can linger as we live longer. Ideas: Help the caregivers, raise standards, redirect benefits, and honor last wishes. * * *Pennsylvania must do a much better job of caring for people with chronic illnesses in the last stages of life, according to a new state report."
Note: For links regarding the referenced report issued by the PA Department of Aging, see PA Elder, Estate & Fiduciary Law Blog, “Improving End of Life Experiences for Pennsylvanians” (02/05/07).

Pittsburgh Post-Gazette:
- "Doctor should give more information to puzzled elderly patients", by Jan Warner & Jan Collins (12/10/06).
Reading Eagle:

"Catholics seek guidance on end-of-life issues" (Associated Press, 01/12/07).

Synopsis: "Catholics around the country are turning to their churches for similar fill-in-the-blank documents that turn Catholic teachings into legally binding agreements about how they want to die. Many signers cite Terri Schiavo, whose case sparked a 15-year legal battle that grew beyond her family all the way to the White House over whether she should be allowed to die."

Scientific American:

"Advance directives may improve end-of-life care", by Amy Norton (06/09/07).

Synopsis: "Families of patients who completed advance directives before their deaths tend to feel their loved ones received somewhat better end-of-life care, according to a new study. Nonetheless, there's still room for improvement."

USA Today:
- "In a Crisis, Do-Not-Revive Requests Don't Always Work", and "Talk It Over With Doctors, Family", both by Laura Parker (12/19/06).
  - Topic: Effectiveness & enforceability of Advance Care Directives to terminate life, and, specifically, a lawsuit, filed in 1997, drawing attention nationwide ready for trial after nearly a decade of legal wrangling, on these issues.
World Net Daily:

"Will you be the next Terri?" -- A post-Schiavo analysis of state laws reveals potential for similar dilemmas across country. (10/17/05).

WEBLINKS: Health Care & Illness

HendershotNE — Wed, 21 Feb 2007 23:13:57 CST

Following are links to resources on medical conditions & specific diseases that offer information, commentary, or experiences regarding health care. These links are provided for illustrative purposes only. Use them in your own discretion. Act only with the advice of a qualified professional.

(See: Notice on Home page.)

HEALTH CARE & ILLNESS:

Alzheimer’s Association
American Pain Society:

Mission: "The American Pain Society is a multidisciplinary community that brings together a diverse group of scientists, clinicians and other professionals to increase the knowledge of pain and transform public policy and clinical practice to reduce pain-related suffering."

Benson-Henry Institute for Mind Body Medicine:

Mission: A world leader in the study, advancement, and clinical practice of mind/body medicine, associated with the Massachusetts General Hospital.

National Cancer Institute:
- Coping with Advanced Cancer
Penn State University -- Penn State News:
- "Doctors Must Consider Potentially Inappropriate Medications When Treating Elderly" (01/06/2005).
U.S. Food & Drug Adminstration (FDA):

"Be An Active Member of Your Health Care Team" (2002, 6 pages).

Synopsis: Tips to protect yourself and get the most benefit from prescription and over-the-counter drugs. Includes a list of questions to ask your doctor, nurse, or pharmacist.

PA HealthCare DecisionMaking - Recently Updated Pages

Home

Click the OPEN COMPASS or the SITE TITLE to return to this PAGE. Click the FLAT COMPASS to return to the TABLE OF SECTIONS.

Durable Health Care Power of Attorney & Health Care Treatment Instructions (Living Will):

Official sample form perPA Department of Aging (PDF, 9 pages)

Official sample form perPA Department of Health(PDF, 9 pages)

Unofficial sample form per PA HCDM's Section 5471

For more forms, see below, under "Forms & Explanations".

Resource Links

ADMINISTRATIVE:

BACKGROUND:

BLOG (Log of Website Additions)

CASES:

COMMENTARIES:

FORMS & EXPLANATIONS:

LEGISLATION:

REFERENCES:

STATUTES:

VISUALS:

VOICES:

WEB LINKS:

Website Notice of Rights & Disclaimers

ADMINISTRATIVE: Author-Sitemaster

AUTHOR-SITEMASTER:

BLOG

BLOG: Log of Website Additions

WEBLINKS: Religious & Spiritual:

WEBLINKS: Medical Professionals:

WEBLINKS: Death & Dying / Hospice:

WEBLINKS: Medical Professionals:

WEBLINKS: Religious & Spiritual:

WEBLINKS: Personal Stories:

WEBLINKS: Bereavement & Coping:

WEBLINKS: Religious & Spiritual

RELIGIOUS & SPIRITUAL:

Anderson, Megory, Sacred Dying: Creating Rituals for Embracing the End of Life:

Associated Press:

Buddha Dharma Educational Association:

Chopra, Deepak, Life After Death: The Burden of Proof (Oct, 2005):

Christianity Today:

Daily Press (Hampton Roads, VA):

Death & Dying in Islam -- Muslim attitudes towards death.

Dying, Yamaraja and Yamadutas + terminal restlessness -- Vedic/Hindu view

Eisenberg, Daniel Eisenberg, MD, "End of Life Choices in Halacha",

ElderWeb:

Evangelical Lutheran Church in America, Statement on "End of Life Decisions" (11/09/1992):

Fischer, Kathleen, Imaging Life After Death: Love That Moves the Sun and Stars:

"Florida Catholic Declaration on Life and Death":

Gundersen Lutheran "End-of-Life Care":

International Scientific Research into 'Survival after physical death':

Kramer, Kenneth, The Sacred Art of Dying: How World Religions Understand Death:

Lamm, Maurice,Jewish Way in Death and Mourning

Momeyer, Richard W., Confronting Death:

National Catholic Bioethics Center (NCBC):

Novak David, Ph.D., "Reconciliation at the End of Life":

Pennsylvania Catholic Conference:

Puchalski, Christina, M., A Time for Listening and Caring: Spirituality and the Care of the Chronically Ill and Dying:

Reinis, Arustra, "Reforming the Art of Dying: The ars moriendi in the German Reformation (1519-1528)":

Sulmasy, Daniel P., "Hope and the Care of the Dying Patient: A Catholic, Christian Perspective":

Tibetan Book of the Dead:

Tikkun -- a Jewish Magazine within an Interfaith Movement:

Toolkit of Instruments to Measure End-of-Life Care -- Spirituality: One of the Key Concerns of Dying Patients:

United States Conference of Catholic Bishops, "Ethical and Religious Directives for Catholic Health Care Services" (2001):

USA Today:

Wald, George,"Origin of Death":

Wiseman OSB, Fr. James, & Rev. Heng Sure, Ph.D., Reflections on Death and Dying: Buddhist and Catholic Teachings and Practices:

WEBLINKS: Death & Dying / Hospice

DEATH & DYING / HOSPICE:

AARP (American Association of Retired Persons):

ABC-TV (Alabama TV 33/40):

AGS Foundation for Health in Aging:

American Bar Association:

American College of Physicians:

American Geriatrics Society:

American Hospice Foundation:

American Psychological Association:

American Medical Association:

Americans for Better Care of the Dying:

Caring Connections:

Mission: A program of the National Hospice and Palliative Care Organization.

Click the OPEN COMPASS or the SITE TITLE to return to this PAGE.

Click the FLAT COMPASS to return to the TABLE OF SECTIONS.

United States Conference of Catholic Bishops, **"Ethical and Religious Directives for Catholic Health Care Services"** (2001):