References

 

Internet

  • CAPC – Center to Advance Palliative Care: www.capc.org – material and references about Palliative Care in general
  • National Hospice & Palliative Care Organization: www.nhpco.org – information about hospices and hospice care in the USA
  • AAHPM – American Academy of Hospice and Palliative Medicine: www.aahpm.org
  • Parents Wish: www.Parentswish.com – a ‘must-see’ website with a slide show of parents telling their adult children what they want them to know about aging and letting them die when it’s time
  • The One Slide Project: www.engagewithgrace.org –  a “single slide” of five points to guide families in discussing end-of-life issues.
  • EPEC – Education in Palliative and End-of-life Care: www.epec.net – the organization that teaches a standardized curriculum in EOLC across the country, primarily for doctors but also for any other health care provider
  • ELNEC – End of Life Nursing Education Consortium: www.aacn.nche.edu/elnec/
  • Hospice of the Shoals: www.hospiceoftheshoals.org – information about our local not-for-profit hospice and hospices in general
  • Eliza Coffee Memorial Hospital: www.chgroup.org – the hospital where our Palliative Care Service is located
  • Patient Decision Aids:  http://www.npc.nhs.uk/patient_decision_aids/pda.phpA great website when making decisions about various treatments; it compares the benefits and the risks of a specific drug or procedure, using understandable drawings/graphs.
  • Advance Directive Information – a great website about Advance Directives [Living Wills] with assistance in completing one. www.prepareforyourcare.org
  • Fast Factspeer-reviewed, one-page outlines of key information on important end-of-life clinical topics for educators and clinicians.
  •  

Books

  • Hard Choices for Loving People: www.hardchoices.com – where you can order this booklet about making difficult choices as the end of life approaches – excellent
  • Byock, Ira.  Dying Well: peace and possibilities at the end of life.  Berkley 1997.
  • Kiernan, Stephen.  Last Rights:  rescuing the end of life from the medical system. St. Martins 2006.
  • Kuhl, David.  What Dying People Want:  practical wisdom for end of life.  PublicAffairs 2002.
  • His Holiness the Dalai Lama.   Advice on Dying, and living a better life.  Atria 2002.
  • Kubler-Ross, Elizabeth.  Questions & Answers on Death and Dying.  Touchstone 1974.
  • Maggie Callanan & Patricia Kelley.  Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying.  Bantam 1997
  • Twycross R, Wilcock A. Editors-in-Chief.  Hospice and Palliative Care Formulary USA.  2nd edition 2008. Palliativedrugs.com ltd.
  • Schneiderman L. Embracing our Mortality:  Hard Choices in an Age of Medical Miracles. 2008 Oxford.
  • Cassell E.  The Nature of Suffering and the Goals of Medicine.  2004 2nd edition.  Oxford.
  • Lown B.  The Lost Art of Healing: Practicing Compassion in Medicine.  1999. Ballentiner.
  • Davis-Floyd R, St.John G.  From Doctor to Healer:  The Transformative Journey.  1998. Rutgers.
  • Webb M.  The Good Death: The New American Search to Reshape the End-of-life. 1997. Bantam.
  • Williams-Murphy M, Murphy K. It’s OK To Die. 2011 MKN

Understanding & Calculating Risks for Diseases & their Treatments

  • Framingham cardiovascular risk calculator – an on-line personal calculator to determine your risk of heart attack or stroke
  • The Paling Perspective Scale – helps put various risks in perspective
  • Simple Tools for Understanding Risks: From Innumeracy to Insight.  G.Gigerenzer. BMJ 2003. – excellent review of understanding risk and benefits of treatments
  • Gigerenzer G.  Calculated Risks.  Simon & Shuster. 2002. – excellent book explaining risks, benefits,  and risk terminology related to medical tests and treatments.
  • Bandolier: Evidence Based Thinking About Healthcare:  http://www.medicine.ox.ac.uk/bandolier/ – great website from Oxford University offering evidence-based information and summaries on healthcare.

Welcome to Comfort Care Choices

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Welcome to Comfort Care Choices

 

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Based on Palliative Medicine, this site offers information related to both aging and the end-of-life, and particularly for people with incurable or life-limiting diseases.

The purpose of the information is to allow patients and families to make better decisions about their healthcare.  I frequently hear from families, “If I had known ‘X’ would happen, I would have chosen ‘Y’ instead.”  Many people do not realize they always have choices.  The underlying premise of good healthcare is that sufficiently credible information will enable people to make more satisfying choices, especially if their goal is to live more comfortably and reduce suffering.

I hope you will find this information beneficial.

 

How to use this site

Topics are organized alphabetically.  By clicking on Articles, you will bring up the list of all topics, as well as a sidebar of Categories:  Nursing Home Care, Health Care Goals, Hospice, Nearing Death, Pain And Symptom Control, Risk And Informed Consent.  Clicking on one of the categories displays a listing of the relevant articles, each with its opening paragraph for easier scanning. Clicking on a topic heading will bring up the complete article.

If you are looking for a specific topic, you can also try using the search window in the upper right corner.

If you have been to one of my Powerpoint presentations and want to review the information again, look under Presentations for the title and the date of the presentation.  These slides also contain a lot of information for anyone else interested in that particular topic.

If you are weary and just want some stress-relieving humor, then click on Humor.  Most of us need some of this daily.

Finally, there are also links to other websites and organizations related to Palliative Care and good healthcare in general – look under References and Other Resources.

 

 

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Future Updates:The information articles (most
of which are provided by our palliative care team to patients and their families),
and the FAQ’s, etc, will be updated as new evidence becomes available; or as my
editorial perspective changes, or as my “editorial board advises”; and the date will
be noted at the bottom.