Resources

  1. AIl Resources

  2. CAM Cancer Resources

  3. Oklahoma

  4. National

  5. Articles and References

AIl Resources

 

Website

Mayo Clinic Cancer Center

http://mayoclinic.com/health/cancer/DS01076

Native American Cancer Research

http://natamcancer.org/index.html

National Indian Women's Health Resource Center

www.niwhrc.org

American Indian Health

http://americanindianhealth.nlm.nih.gov/

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CAM Cancer Resources

 

Website

National Cancer Resources

www.cancer.gov/cancerinfo/pdq/cam

Cancer and Complementary and Alternative Medicine

http://nccam.nih.gov/health/camcancer/

 

Memorial Sloan-Kettering Cancer Center

www.mskcc.org

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Oklahoma

Website

   

 

 OU Palliative & Supportive Care

https://www.oumedicine.com/oumedicine/adult-services/palliative-and-comfort-care 

Department of Human Services, Aging Services Division

www.okdhs.org/aging/end-of-life-planning.htm

Oklahoma Hospice and Palliative Care Association

www.okhospice.org

Oklahoma Department of Health, Long Term Care Service

www.health.state.ok.us/program/ltc

Oklahoma Palliative Care Resource Center Blog

http://opcrcblogspotcom.blogspot.com/

 

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National

http://aspe.hhs.gov/daltcp/reports/2008/ADCongRpt.htm

Aging with Dignity

www.agingwithdignity.org

American Academy of Pain Medicine

www.painmed.org

American Alliance of Cancer Pain Initiatives

www.aacpi.wisc.edu

American Health Lawyers Association

www.healthlawyers.org

Americans for Better Care of the Dying (ABCD)

www.ABCD-caring.org

American Board of Hospice and Palliative Medicine

www.abhpm.org

American Board of Internal Medicine - Care for the Dying, Physician Narratives

www.abim.org

American Hospice Foundation

www.americanhospice.org

American Journal of Critical Care

http://ajcc.aacnjournals.org

American Journal of Nursing, Palliative Nursing Series

www.AJNonline.com

American Society for the Advancement of Palliative Care

www.asap-care.com

American Society of Pain Management Nurses

www.aspmn.org

At the End of Life

www.aarp.org/confacts/programs/endoflife.html

Before I Die: Medical Care and Personal Choices

www.wnet.org/archive/bid

Bereavement and Hospice Support Netline

www.ubalt.edu

The Careguide

www.thecareguide.com

CAM Education

www.csh.umn.edu/modules/index.html

Caring Connections (NHPCO)

www.caringinfo.org

Center to Advance Palliative Care (CAPC)

www.capcmssm.org

Center to Advance Palliative Care (Training and Teaching Materials)

Training and Teaching Materials

Center for Hospice and Palliative Care

www.hospicebuffalo.org

Center to Improve Care of the Dying

www.gwu.edu/~cicd

Center for Practical Bioethics

www.practicalbioethics.org

Decisions Near the End of Life Education Development Center, Inc.

www.edc.org/CAE/Decisions/dnel.html

Dying Well

www.dyingwell.org  or www.dyingwell.com

Education for Physicians on End of Life Care (EPEC)

www.epec.net

The End of Life: Exploring Death in America

www.npr.org/programs/death

End of Life Nursing Education Consortium (ELNEC)

www.aacn.nche.edu/ELNEC

Federation of State Medical Boards

www.fsmb.org

Griefnet

www.griefnet.org

Grief Recovery Online for ALL Bereaved

www.groww.org

Growth House, Inc.

www.growthhouse.org

Harvard Medical School Center for Palliative Care

www.hms.harvard.edu/cdi/pallcare

The Hospice of the Florida Suncoast

www.thehospice.org

Hospice and Palliative Nurses Association

www.hpna.org

Hospice Foundation of America

www.hospicefoundation.org

Hospice Home Page

www.scu.edu/Hospice

Hospice Net

www.hospicenet.org

Hospice Resources

www.hospiceresources.net

Innovations in End of Life Care

www.edc.org/lastacts

Last Acts Campaign

www.lastacts.org

Last Passages Project

www.albany.edu/aging/lastpassages/index.htm

Missoula Demonstration Project

www.missoulademonstration.org

National Association of Drug Diversion Investigators

www.naddi.org

National Hospice and Palliative Care Organization

www.nhpco.org

National Prison Hospice Association - Development of Hospice Care in Correctional Facilities

www.npha.org

National Public Health: Exploring Death in America

www.npr.org

Now I lay me Down to Sleep

www.nowilaymedowntosleep.org/

NHPCO Office of Disability

www.nhpco.org/i4a/pages/index.cfm?pageid=4733

On Our Own Terms

www.pbs.org/wnet/onourownterms

Open Society Institute Project on Death in America

www.soros.org/initiatives/pdia

Pain Medicine and Palliative Care Resource Center

www.stoppain.org

Palliative Care

www.growthhouse.org

Partnership for Caring: America's Voices for the Dying

www.partnershipforcaring.org/HomePage

Partners Against Pain

www.partnersagainstpain.com

Partnership for a Drug Free America

www.drugfree.org

Promoting Excellence in End of Life Care

www.promotingexcellence.org

Sacramento Healthcare Decisions

www.sachealthdecisions.org

Supportive Care of the Dying

www.careofdying.org

Traditional Indian Medicine 
and Native American Cancer Patients

http://litsite.alaska.edu/healing/burhan.html

The National Office of Native Survivorship

http://www.oncs.org/

Toolkit of Instruments to Measure End of Life Care

www.chcr.brown.edu/pcoc/toolkit.htm

 

Articles and References

"Outcomes That Matter in Chronic Illness:  A Taxonomy Informed by Self-Determination and Adult-Learning Theory,"Zubialde, J., Mold, J, Eubank, D, Families, Systems, & Health, 2009, Vol. 27, No. 3, 193-200.

Hamm, R.M. (2009). "Automatic Thinking". In M.W. Kattan (Ed.), Encyclopedia of Medical Decision Making(Vol. 1, pp. 45-49). Thousand Oaks, CA: Sage Publications. "A more vivid manifestation may be seen in phy sicians' thinking under the real threat of death, in the traditional approach to end-of-life care. When stunned patients and family members deal with the high probability of death, physicians naturally strive to do all they can do, to muster all their power in line with the traditional injunction to preserve life at all costs, despite its futility. Recently, new institutions have been developed to redirect the automatically activated motivations to exercise control in the face of anxiety and to adhere to authority's precepts in the face of the possibility of death. The alternative approach is embodied in the standards of palliative care, which provides a new set of skills to exercise to give the physician some thing useful to do when the patient is dying. It incorporates a new authoritative framework, including the laws authorizing Do-Not-Resuscitate orders and living wills, the legitimacy of the Advance Directive, and the proxy decision maker. It is a good example of the design of institutions to cope with the automatic thinking elicited by the most challenging situations physicians face, dem onstrating that this form of automatic thinking need not be opposed to rationality." Pp 47 and 48.

Textbook of Palliative Nursing, Ed. Betty R. Ferrell and Nessa Coyle, 2nd Ed. (Oxford, 2006).

"Improving the Quality of Spiritual Care as a Dimension of Palliative Care: The Report of the Consensus Conference",Puchalski, Ferrell, et. al, JOURNAL OF PALLIATIVE MEDICINE
Volume 12, Number 10, 2009.

"Who Needs a Palliative Care Consult?", http://www.liebertonline.com/doi/pdf/10.1089/jpm.2006.0237?cookieSet=1

"Prolonging Life at End of Death," http://well.blogs.nytimes.com/2009/09/09/prolonging-death-at-the-end-of-life/

"Cancer Paws"   http://www.pioneerlocal.com/niles/news/1752270,park-ridge-puppychemo-091009-s1.article

"Debriefing to Help Perinatal Nurses Cope With a Maternal Loss," The American Journal of Maternal/Child Nursing , Vol. 34, No. 4, pp. 243-248.

Palliative Care Programs Boost Hospitals Bottom Line, Washington Post, Sept. 12, 2008,http://www.washingtonpost.com/wp-dyn/content/article/2008/09/12/AR2008091202417.html?referrer=emailarticle

A Qualitative Study of Oncologists' Approaches to End-of-Life Care, Jackson, 
JOURNAL OF PALLIATIVE MEDICINE, Volume 11, Number 6, 2008
DOI: 10.1089/jpm.2007.2480

"Perinatal Hospice," Newborn & Infant Nursing Reviews, Vol. 7, No. 4, Dec. 2007, 216-221.

Journal of Hospice and Palliative Nursing, 6(3):161-170, 2004. "Understanding Grief: A Component of Neonatal Palliative Care"  Tricia L. Romesberg

Comprehensive Neonatal Nursing, 4th Edition, An Interdisciplinary Approach, Carole Kenner and Judy Wright Lott (Saunders, 2007).

Comprehensive Neonatal Nursing, 3rd Edition, A Physiologic Perspective , Carole Kenner and Judy Wright Lott (Saunders, 2003)

"Bringing Perinatal Palliative Care to the Forefront: One Nurses View,"  Journal of Hospice & Palliative Nursing.6(3):142-143, July/August/September 2004. Catlin, Anita

"Palliative Care in the Neonatal Intensive Care Unit," Carole Kenner and Sylvia McSkimming, Textbook of Palliative Care Nursing,(Oxford Press, 2006) pp. 959-973

Journal of Gerontological Nursiing, Vol. 34, No.2, 2008

Older Oklahomans' Knowledge, Attitudes, and Behaviors Related to Advance Directives"

A research study by the Center for Bioethics at the University of Minnesota concludes that homeless people appreciate the opportunity to complete advance directives for health care.

End-of-life discussions and agressive care

According to a recent journal article posted by JAMA, end-of-life discussions are associated with less aggressive medical care near death and earlier hospice referrals. Aggressive care is associated with worse patient quality of life and worse bereavement adjustment. 

Missouri "Practical Bioethics Center Blog" Raises Ethical Questions

 

Pain, Palliative Care and Medical Futility Smith, George P.,Intractable Pain, Palliative Management and the Principle of Medical Futility(2008). CUA Columbus School of Law Legal Studies Research Paper No. 2008-28
Available at SSRN: http://ssrn.com/abstract=1166384

Early conversations aid families, physicians with dying process

KHI News Service, August 18, 2008

End of life planning: New approach gives patients stronger voice

KHI News Service, August 18, 2008

The POLST, or Physician Orders for Life-Sustaining Treatment, process provides patients and their loved ones with an opportunity to take a more comprehensive approach to end-of-life issues than other tools, such as living wills, allow them to do.

"Slow Medicine"

Religion & News Weekly, August 15, 2008, episode 1150

Growing old, most feel, is better than the alternative. But although some of us will age gracefully, some surely will not. Advances in medical care don't always help, and treatment can be expensive and have debilitating side effects. Some doctors are now proposing that their patients consider what's being called "slow medicine," that is, trying to let nature take its course rather than aggressively fighting the ravages that sometimes accompany old age.

A Place to Turn When a Newborn Is Fated to Die 
By NEELA BANERJEE 
Families whose babies suffer from fatal conditions are turning to specialized hospice programs for help.

Palliative Care Ethics Center

The Oklahoma Palliative Care Resource Center is launching a new resource for health care professionals. The "ethics" page will host questions, commentary, and discussion of issues raised by physicians, nurses, social workers, chaplains and other professionals working with palliative care or patients facing end-of-life decisions. If you have questions, contact us: ok-palliative@ouhsc.edu

Do Alzheimer's Patients Feel Pain?

The Journal Brain published an article detailing research conducted in Australia among patients suffering from dementia. It showed that Alzheimer's sufferers feel pain like everyone else but are given fewer pain killing drugs because they are not likely to report pain.

End-of-Life in the Pediatric Intensive Care Unit

The September issue of Pediatrics contains an article titled "Matters of Spirituality at the End of Life in the Pediatric Intensive Care Unit." Examining the answers to a survey of families whose children had died in pediatric ICUs, the researchers noticed that four explicitly religious themes emerged. These were prayer, faith, access to and care from clergy, and belief in the transcendent quality of the parent-child relationship that endures beyond death. The research also noted that parents may be reluctant to share their faith perspective with health care providers for fear that their spirituality may be misunderstood or judged.

Soldiers Need Advance Care Planning

USA Today reported a concern raised in a symposium this summer sponsored by the Army's Wounded Warrior Program as to whether emergency physicians acting as initial responders should have access to living wills or DNR orders. Wounded soldiers and families of casualties noted that at least 250 soldiers have returned from Afghanistan and Iraq with severe head wounds that left them, at least initially, comatose or unable to respond to people.

New Website for Aging

The National Association of Area Agencies on the Agency has published on its website a report titled "The Maturing of America - Getting Communities on Track for an Aging Population." The report demonstrates that less than half of the nation's communities have begun to prepare to deal with the needs of the elderly.

NEW BOOK! 
Unplugged: Reclaiming Our Right to Die in America. See the first reviews.

End-of-Life Care for Late-Stage Alzheimer's Patients by Betty Garrett Wood, JD

Four million Americans, including approximately 70,000 Oklahomans, have Alzheimer's disease or a related dementia. One in ten persons over the age of 65 years and one in two persons over the age of 85 years have Alzheimer's. The longer a person lives, the higher the chances of developing Alzheimer's. As Oklahoma's population ages, the number of Oklahomans with Alzheimer's is projected to grow to 100,000 by 2025. By 14 to 16 million Americans are anticipated to be diagnosed with Alzheimer's, unless a cure is found soon. Click here for more information.

 Pain Medicine: Philosophy, Ethics and Policy. Nashville, TN: Linton Atlantic Press, Nashville, TN, 2009.  

The American Health Lawyers Association has issued a free guide to legal issues in life-limiting conditions.AHLA has released A Guide to Legal Issues in Life-Limiting Conditions. The document was produced as part of AHLA's public interest commitment to serve as a public resource on selected healthcare legal issues.

A Legal Guide to Life-Limiting Conditions provides an overview of the key legal and practical issues that arise in the care of individuals who face a life-limiting condition or who care for a loved one with a life-limiting condition. As an aid to the planning process, the Guide is organized around the continuum of care, beginning with healthy individuals who are able to live at home and following the continuum to independent retirement communities, assisted living, long term care, and an eventual return to the home with the aid of hospice services.

Dr. Ira Byock, one of the foremost experts on caring for those at the end of life, endorsed the Guide for many different audiences: "This Guide deserves a place on the desk of any attorney, physician, nurse, case manager, or social worker who helps elderly or ill clients think about and plan for the future. It sits on mine."

Consumer's Tool Kit for Health Care Advance Planning
Good advance planning for health care decisions is, in reality, a continuing conversation - about values, priorities, the meaning of one's life, and quality of life. To help you in this process, the American Bar Association has created atool kit with  a variety of self-help worksheets, suggestions, and resources. There are 10 tools in all, each clearly labeled and user-friendly. The tool kit does not create a formal advance directive for you. Instead, it helps you do the much harder job of discovering, clarifying, and communicating what is important to you in the face of serious illness.http://www.abanet.org/aging/toolkit/home.html

 It Takes a Team: Communication Among Older Patients, Families and Health Care Providers . .video, Jane Carney

 Special Report by Betty Ferrell, OU Grad, on spiritual care as part of palliative care, more . . .

Oklahoma received the lowest "F" in palliative care in hospitals in the nation in a 2008 survey, but LaCrosse, Wisconsin has a record that makes it an enviable place to receive medical treatment that honors the wishes of its constituents:  96% of the people who die in LaCrosse have completed an advance directive. . . listen here at NPR.

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