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Advanced Care Planning & Decision-Making        Last Updated: May 03, 2008
 

New Additions
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Efficacy of a Training Intervention on the Quality of Practitioners' Decision Support for Patients Deciding about Place of Care at the End of-Life: A Randomized Control Trial: Study Protocol

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Hope and Prognostic Disclosure
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Conclusion: Although physicians sometimes limit prognostic information to preserve hope, we found no evidence that prognostic disclosure makes parents less hopeful. Instead, disclosure of prognosis by the physician can support hope, even when the prognosis is poor.

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View a review on Pallimed

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The role of stressors and coping strategies in the burnout experienced by hospice workers

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A Problem of Informing a Juvenile

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"Your Father Died of a Disease Called Cancer": Explaining Death to Children

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FAST FACT & CONCEPT #183: Conflict Resolution I: Careful Communication

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FAST FACT AND CONCEPT #184: Conflict Resolution II: Principled Negotiation

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POLST.org
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Our goal is to effectively communicate the wishes of seriously ill patients to have or to limit medical treatment as they move from one care setting to another.

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Physician Medical Decision-making at the End of Life in Newborns: Insight Into Implementation at 2 Dutch Centers

Prior Additions
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Association Between Advance Directives and Quality of End-of-Life Care: A National Study

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Home care of a child dying of a malignancy and parental awareness of a child's impending death

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The Last Word on the Last Breath (New York Times Health)

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DNR orders in the NY Times

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CPR Musings

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Estimating needs in life threatening illness: a feasibility study to assess the views of patients and doctors

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Famous Last Words

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American Psychological Association Task Force on End-of-Life Issues

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End-of-life decisions in delivery room and neonatal intensive care unit

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Withholding treatment, withdrawing treatment, and palliative care in the neonatal intensive care unit

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Dutch doctors are given guidance on palliative sedation

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Medical Student Project Makes Advanced Directives Easy and Accessible
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Accessing and completing advanced directives online is now easier thanks to three medical students from the University of Rochester who teamed up to create www.doyourproxy.org, a free, not for profit Web site dedicated to making advanced directives easy to fill out. This great online tool helps people create both health care proxies and living wills online. Other features include the ability to print the resulting documents, save digital copies on your hard drive, and send out email summaries of your advanced directives to family, friends and one's doctors.

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Survey of respiratory therapists' attitudes and concerns regarding terminal extubation

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Children with Cancer Can Plan Own Treatment

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Decision-Making Capacity Guidelines

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Treatment decisions regarding infants, children and adolescents

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Children and adolescents with advanced cancer can make complex end-of-life care decisions

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Thinking about “Allow Natural Death” Orders

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Managing Conflict at the End of Life (N Engl J Med 2005;352(23):2371-3)
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Interview with Dr. M. Gregg Bloche on managing conflict at the end of life

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Medical Futility

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Non-Oral Hydration in Palliative Care

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Life Support Withdrawal: Communication and Conflict (pdf from Medscape)

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Decision support: helping patients and families to find a balance at the end of life

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Palliative Performance Scale (PPS) (Fast Fact from EPERC)

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Is the palliative performance scale a useful predictor of mortality in a heterogeneous hospice population?

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My pain at having to decide if Luke should live or die - North Wales, UK

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Consideration of hastening death among hospice patients and their families

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Health Care Decision-Making in Pediatric Palliative Care

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Termination of Life Support After Severe Child Abuse: The Role of a Guardian ad Litem

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Precedents for hospice and surrogate decision-making in Jewish law

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Professional competence and palliative care: an ethical perspective

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Futile Care and the Neonate
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The concept of futile care is controversial and difficult to define. Efforts to prolong life, once considered an outcome of healing, may now be viewed by some as harmful acts of prolonging suffering. This article reviews a number of cases representing this challenging ethical dilemma.

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The Initiation or Withdrawal of Treatment for High-Risk Newborns
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Policy statement from the American Academy of Pediatrics

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"Inappropriate" treatment near the end of life: conflict between religious convictions and clinical judgment

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A prospective study of patient-physician communication about resuscitation. J Am Geriatr Soc. 2000 May;48(5 Suppl):S52-60 Order here with NLM Gateway ID #: 10809457
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Communication about resuscitation preferences occurred infrequently after hospital admission for a serious illness, even among patients wishing to forego resuscitation. Factors such as declining quality of life, which were expected to be associated with communication, were not. An invitation to communicate about CPR preference is important after hospital admission for a serious illness. Novel approaches are needed to promote physician-patient discussions about resuscitation.

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Withdrawal of Support: Intensive Caring at the End of Life

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Decisions on end-of-life care shouldn't be left to the end

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Advance Care Planning: Preferences at the End of Life

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Improving the Process of Informed Consent in the Critically Ill JAMA. 2003;289:1963-1968

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Communication, Trust, and Making Choices: Advance Care Planning Four Years On

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Shifting the Focus of Advance Care Planning: Using an In-depth Interview to Build and Strengthen Relationships

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Informing the Patient-Proxy Covenant: An Educational Approach for Advance Care Planning

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Update on Respecting Choices: Four Years On

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New Hampshire Partnership for End-of-Life Care

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Selected bibliography

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"Thinking Ahead" Guide for patients

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Decision Making in Palliative Surgery American College of Surgeons (pdf)

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The Paradox of Hydration in Advanced Terminal Illness American College of Surgeons (pdf)

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Palliative Care in the Surgical Intensive Care Unit American College of Surgeons (pdf)

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Who Should Manage the Dying Patient?: Rescue, Shame, and the Surgical ICU Dilemma American College of Surgeons (pdf)

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Dilemmas within the Surgical Intensive Care Unit American College of Surgeons (pdf)

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When do we stop, and how do we do it? Medical futility and withdrawal of care
American College of Surgeons (pdf)

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Quality of life of Do-Not-Resuscitate (DNR) patients: how good are physicians in assessing DNR patients’ quality of life?
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Conclusion: Physicians often (71%) rely on the assumed quality of life of their patients in their DNR decision but unfortunately tend to underestimate it. Greater involvement of patients in the DNR decision could improve quality of care.

Bereavement

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Training for doctors and nurses to deal with bereaved relatives after a sudden death: evaluation of the European Donor Hospital Education Programme (EDHEP) in Germany

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The Bereavement Register - UK

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Grieving Parents At Increased Suicide Risk

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Evaluation of the Bereavement Risk Index (BRI): a community hospice care protocol
 

Communication

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Oncologist Communication About Emotion During Visits With Patients With Advanced Cancer

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Hope and Prognostic Disclosure
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Conclusion: Although physicians sometimes limit prognostic information to preserve hope, we found no evidence that prognostic disclosure makes parents less hopeful. Instead, disclosure of prognosis by the physician can support hope, even when the prognosis is poor.

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View a review on Pallimed

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Efficacy of communication skills training for giving bad news and discussing transitions to palliative care

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To show our humanness--relational and communicative competence in pediatric palliative care

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Sudden traumatic death in children: "we did everything, but your child didn't survive"

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Improving Communication in the ICU about End-of-Life Care in the ICU Reduces Symptoms of Stress, Anxiety, and Depression in Family Members

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Offering Inappropriate Treatments

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10 Commandments of Consultation

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Reflective Teaching Practices: An Approach to Teaching Communication Skills in a Small-Group Setting

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Communication in palliative care: a review of recent literature

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Beyond Advance Directives - Importance of Communication Skills at the End of Life

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Teaching medical students and doctors how to communicate risk

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Can communication skills training alter physicians' beliefs and behavior in clinics?

Cultural Issues

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Caring for Culturally Diverse Patients: One Agency's Journey Toward Cultural Competence

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At the End of Life, a Racial Divide

Ethics

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Palliative Terminal Sedation: Is it Ethical?

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Sedation in palliative care – a critical analysis of 7 years experience
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full text (pdf)

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Terminal sedation and the "imminence condition"

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Attitudes towards terminal sedation: an empirical survey among experts in the field of medical ethics

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Evolving medicolegal issues in palliative medicine

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A Problem of Informing a Juvenile

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"Your Father Died of a Disease Called Cancer": Explaining Death to Children

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The Placebo:Lying to the Patient-A Skillful Use of Reassurance and Encouragement?

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Medical Challenges: Jumping to Conclusions and Medical Uncertainty

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Attitudes toward euthanasia and physician assisted suicide: a survey among medical students, oncology clinicians, and palliative care specialists

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Bioethics Discussions - January 2007
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Pain
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Pain is one of the most common personal experiences that virtually all humans can have during their lifetime. It is a subjective occurrence that often cannot be easily quantitated and compared between individuals since it appears that each individual looks at his or her pain in their own way.... And many ethical issues have involved conflicts regarding pain and suffering and pain management. But do all patients find that relief of pain is a good action?...Here is the question: What Does Pain Mean to You? Is Relief of Pain Always a Good Thing?

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Willful Ignorance: When Is It Acceptable?

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The Ashley Case and What is Ethical?

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Professional vs Personal in Decision Making

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The Dying Patient: Some Questions

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Role Playing Exercise: A Case of Killing vs Letting Die

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A Role Playing Exercise: Terminal Illness and A Disbelieving Family

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Is it Futile to Attempt to Define Medical Futility?

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Medical Decisions: Role of the Physician's Personal Opinion

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Role Playing Exercise: A Case of Killing vs Letting Die

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Is it Futile to Attempt to Define Medical Futility?

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Informing patients about cancer in Nepal: what do people prefer?

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Not Telling Bad News: An Ethical Dilemma

General Psychosocial Issues
 
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Supporting a patient after a near-death experience

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Psychosocial resources and depression among chronically ill young adults: Are males more vulnerable?

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Impact on parents when a child has a progressive, life-threatening illness

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Maslow's hierarchy of needs: a framework for achieving human potential in hospice

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Companionship, control, and compassion: a social work perspective on the needs of children with cancer and their families at the end of life

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Family perspectives on communication with healthcare providers during end-of-life cancer care

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Death in the pediatric ICU: caring for children and families at the end of life

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Improving Coping Skills Benefits Caregivers of Hospice Cancer Patients

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Doctors' Delicate Balance in Keeping Hope Alive (you will need to have or create a free registrtion)

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The Laughter Effect

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Can 40 Seconds of Compassion Reduce Patient Anxiety?

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Grief in Children and Developmental Concepts of Death

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Dealing With Conflict in Caring for the Seriously Ill

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Caring for the Child With Cancer at the Close of Life

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A post-hoc analysis of music therapy services for residents in nursing homes receiving hospice care

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The impact on families of respite care in a children's hospice program

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Psychosocial Functioning in Pediatric Cancer

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Unobvious wounds: the suffering of hospice patients

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Talking about death with children who have severe malignant disease
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Conclusions: Parents who sense that their child is aware of his or her imminent death more often later regret not having talked with their child than do parents who do not sense this awareness in their child; overall, no parent in this cohort later regretted having talked with his or her child about death.

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Provider Perceptions of Child Deaths
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Elena M. Andresen, PhD; Grace A. Seecharan, MPH; Suzanne S. Toce, MD

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How Pediatricians Counsel Parents When No "Best-Choice" Management Exists -
Lessons to Be Learned From Hypoplastic Left Heart Syndrome

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Annie's song: a student's reflection on a memorable patient's end-of-life care

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'Symbiotic niceness': constructing a therapeutic relationship in psychosocial palliative care

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More behavioral, social sciences education needed

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Overcoming the false dichotomy of "curative" vs "palliative" care for late-stage HIV/AIDS: "let me live the way I want to live, until I can't"

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Supporting family caregivers at the end of life: "they don't know what they don't know"

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The burden of the 'RA RA' positive: survivors' and hospice patients' reflections on maintaining a positive attitude to serious illness. Support Care Cancer, October 25, 2003

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Pilot of a workbook for children visiting a loved one in a hospice
Int J Palliat Nurs, September 1, 2003; 9(9): 397-403

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"You matter to the last moment of your life"

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Depression, Anxiety, and Asthenia in Advanced Illness American College of Surgeons (pdf)

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The self-efficacy of family caregivers for helping cancer patients manage pain at end-of-life

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Families' awareness of and response to dying Clin J Oncol Nurs. 2000 Jan-Feb;4(1):46
Order here with NLM Gateway ID #: 10865585
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"Conclusions: Developing an awareness of dying is a gradual process for family caregivers. Uncertainty and anguish characterize this process... Further research into how family caregivers use...strategies for managing their developing awareness of dying is required."

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Managing communication with young people who have a potentially life threatening chronic illness: qualitative study of patients and parents
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Objectives: To examine young people's and parents' accounts of communication about cancer in childhood. Conclusions: There are difficulties in managing communication with young people who have a chronic, life threatening illness. Health professionals need to be aware of how the social positioning of young people (relative to adults) and the executive role of parents can contribute to the marginalisation of young people and hamper the development of successful relationships between themselves and young patients.

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Assisted suicide: factors affecting public attitudes

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Pain and hope in patients with cancer: a role for cognition
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No difference in level of hope was found between patients with pain and those without pain. For those with pain, the cognitive dimension of pain (meaning ascribed to pain) was significantly correlated with hope, whereas sensory dimensions (pain intensity and relief) showed no such correlation. The study results support the role of cognition in promoting the psychological well-being of patients with cancer. Cancer Nurs 2003 Feb;26(1):61-7

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A New View of Comprehensive Cancer Care
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Integrating cancer & hospice care from the time of diagnosis

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Truth May Hurt but Deceit Hurts More: Communication in Palliative Care
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Fallowfield LJ, Jenkins VA, Beveridge HA, Palliat Med 2002 Jul;16(4):297-303

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The ABCs of Psychological Medicine: The Consultation (pdf)
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Linda Gask, Tim Usherwood. BMJ Vol. 324, 29 June 2002

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Assisted Suicide: Practice versus Theory: The Dutch Experience

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Patient attitudes towards euthanasia and assisted suicide

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Dealing With False Optimism in Terminal Cancer
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I believe this is a personal issue we all should ponder, for the benefit of our patients and ourselves. This is a review of the article in The British Medical Journal.

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The Complexities of Physician-Assisted Suicide
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This well-presented, thorough discussion will help you manage a request for physician-assisted suicide.

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Understanding of Prognosis Among Parents of Children Who Died of Cancer; Impact on Treatment Goals and Integration of Palliative Care 
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Joanne Wolfe, MD, MPH; Neil Klar, PhD; Holcombe E. Grier, MD; Janet Duncan, RN, MS; Susanne Salem-Schatz, ScD; Ezekiel J. Emanuel, MD, PhD; Jane C. Weeks, MD, MSc

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Context: Parents' understanding of prognosis or decision making about palliative care for children who die of cancer is largely unknown. However, a more accurate understanding of prognosis could alter treatment goals and expectations and lead to more effective care.

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Language and Reality at the End of Life
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A wonderful article, helping all of us understand each other and our own feeling when dealing with terminal illness and death. You must find the article in your library.

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Raphael Cohen-Almagor; Journal of Law, Medicine, & Ethics, 28 (2000): 267-278 © 2000 by the American Society of Law, Medicine, and Ethics
 

Professional Issues

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And Who Are You?
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A tip on recognizing and supporting extended friends and family

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"Notice how you feel": an alternative to detached concern among hospice volunteers
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In my opinion, this is a critical survival skill for all those who work in the field of palliative care. -- Gary Allegretta, MD

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Medical Decisions: Role of the Physician's Personal Opinion

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Finding peace and joy in the practice of medicine

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Survival Guide For Palliative Care RNs

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Learning from the Dying (New England Journal of Medicine Vol. 353, 9/29 2005, Number 13
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Interview with Dr. Susan Block and medical student Christie Sullivan on Sullivan's first experience with a terminally ill patient.

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Effects of spiritual care training for palliative care professionals

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E-mail a great office tool, but sometimes you need to talk

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Communicating With Realism and Hope: Incurable Cancer Patients' Views on the
Disclosure of Prognosis
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RESULTS: Ninety-eight percent of patients wanted their doctor to be realistic, provide an opportunity to ask questions, and acknowledge them as an individual when discussing prognosis. Doctor behaviors rated the most hope giving included offering the most up to date treatment (90%), appearing to know all there is to know about the patient's cancer (87%), and saying that pain will be controlled (87%). The majority of patients indicated that the doctor appearing to be nervous or uncomfortable (91%), giving the prognosis to the family first (87%), or using euphemisms (82%) would not facilitate hope. Factor analysis revealed six general styles and three hope factors; the most strongly endorsed styles were realism and individualized care and the expert/positive/collaborative approach. A range of demographic, psychological, and disease factors were associated with preferred general and hope-giving styles, including anxiety, information-seeking behavior, expected survival, and age.

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The stresses of volunteering in a hospice: a qualitative study

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A prospective study of the roles, responsibilities and stresses of chaplains working within a hospice

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Nurse-patient relationships in palliative care

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Caring for the Child With Cancer at the Close of Life

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Docs Miss Chances for End-of-Life Talks

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On Being a Doctor
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Published in the Annals of Internal Medicine by Michael K. Williams, MD, this article takes a close look at really caring for your patients. Short and poignant.

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Being a caring doctor may be bad for you
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"The whole push to create more caring doctors has to be balanced with a need to allow doctors to manage their burnout and emotional distress," said Dr Willcock. "People need to realise that you can’t work in health and not be faced with emotionally difficult situations; it’s an occupational risk."

Spirituality
 
 

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Last modified: May 04, 2008