Kidney End of Life Coalition

*NEW 9/09* Clinical Algorithm & Preferred Medications to Treat Pain in Dialysis Patients is a brochure developed by an international panel of experts in pain and symptom management in order to assist caregivers while managing pain in dialysis patients. The brochure includes:

A pain management algorithm
An overview of the essentials of pain management
the World Health Organization's analgesic ladder
Instructions for neuropathic and nociceptive pain treatment
How to manage opioid adverse effects
Preferred medications in CKD
A pain assessment tool

Click here for a list of related reference materials.

Legal Issues

American Bar Association's "Health Care Advance Directives" webpage offers information in layman's terms about the legal issues surrounding an advance directive, including useful information to consider when writing and advance directive and information about the Patient Self-Determination Act (PSDA).

State Legislative Activities:

AMERICA'S CARE OF SERIOUS ILLNESS: A State-by-State Report Card on Access to Palliative Care in Our Nation's Hospitals provides the Center to Advance Palliative Care's (CAPC) 2008 “report card.” View your state's report card.

Physician's Orders for Life-Sustaining Treatment (POLST) Paradigm is designed to improve the quality of care people receive at the end of life. The term POLST Paradigm is used to describe several programs, developed on a state or community-wide basis, having different program names, forms, and policies. This website maintains a posting of states that have adopted such programs. (See related article under "Recommended Readings" below)

Individual States' Legislation:

Federal Patient Self-Determination Act (PSDA) Final Regulations
On November 5, 1990, Congress passed this measure as an amendment to the Omnibus Budget Reconciliation Act of 1990. It became effective on December 1, 1991. The PSDA requires many Medicare and Medicaid providers (hospitals, nursing homes, hospice programs, home health agencies, and HMOs) to give adult individuals, at the time of inpatient admission or enrollment, certain information about their rights under state laws governing advance directives, including:

The act also prohibits institutions from discriminating against a patient who does not have an advance directive. The PSDA further requires institutions to document patient information and provide ongoing community education on advance directives.

California HealthCare Foundation provides an article and several resources on racial, cultural, and ethnic factors affecting the quality of end-of-life care.

Education

Advance Care Planning: For Dialysis Patients and Their Families is a brochure developed by the Mid-Atlantic Renal Coalition (Network 5) and the Acadmey for Educational Development (AED) to help dialysis patients plan for their care. Download an order form.

Dying Well (online course) is part of the Digital Imaging Advancement Productions' (DIA) Learning division. This course contains high-quality video documentary, text, and quiz components and is approved by the National Association of Social Workers-Missouri Chapter for 12 continuing education hours.

End-of-Life Nursing Education Consortium (ELNEC) is a national education initiative to improve end-of-life care in the United States. ELNEC offers various educational courses for nurses on hospice and palliative care.

Supportive Care for the Renal Patient is a book edited by E. Joanna Chambers, Michael Germain, and Edwina Brown, that provides comprehensive guidance in providing palliative care to dialysis patients.

Dying Well (book) A book written by Ira Byock, MD, that provides resources for individuals facing serious illness. Dr. Byock, a palliative care expert and advocate for enhanced end-of-life care, also offers information for families and professional caregivers.

Growth House has a collection of international resources for end-of-life care. This site includes a search engine to provide in-depth resources on compassionate care for those suffering from serious illnesses.

The Alliance for Care at the End of Life, a 501(c)4 organization, was created by the National Hospice and Palliative Care Organization (NHPCO) in April of 2007 to provide a more aggressive and comprehensive advocacy voice that will serve the entire field and, ultimately, one of America's most vulnerable populations - those nearing the end of life.

MediCaring.net is a site sponsored by the Palliative Care Policy Center, formerly known as Center for Palliative Care Studies (CPCS). This site offers a variety of resources on improving end-of-life care such as caregiver guides and research on chronic illness.

National Alliance for Caregiving is a non-profit coalition created in 1996 to support family caregivers and the professionals who serve them. Its membership includes more than 30 national organizations.

National Family Caregivers Association provides services, support, and education to improve the quality of life for caregivers and families. The association offers free membership for family caregivers.

Back A, Young J, McCown E, Engelberg R, Vig E, Reinke L, et al. Abandonment at the End of Life From Patient, Caregiver, Nurse, and Physician Perspectives: Loss of Continuity and Lack of Closure. Arch Intern Med.2009; 169(5):474-479.

Carson R, Juszczak M, Davenport A, Burns A. Is Maximum Conservative Management an Equivalent Treatment Option to Dialysis for Ederly Patients with Significant Comorbid Disease? Clin J Am Soc Nephrol. 2009;4:1611-1619.

de Jager D, Grootendorst D, Jager K, et al. Cardiovascular and Noncardiovascular Mortality Among Patients Starting Dialysis. JAMA. 2009; 302(16):1782-1789.

Ellam T, El-Kossi M, Prsanth K.C., El-Nahas M, Khwaja A. Conservatively managed with stage 5 chronic kidney disease - outcomes from a single center experience. QJ Med.2009; 102:547-554.

Ganzini L, Goy E, Dobscha S. Oregonians' Reasons for Requesting Physician Aid in Dying. Arch Intern Med. 2009;169(5):489-492.

Hanchate A, Kronman A, Young-Xu Y, Ash A, Emanuel E. Racial and Ethnic Differences in End-of-Life Costs: Why Do Minorities Cost More Than Whites? Arch Intern Med. 2009;169(5):493-501.

Hasselaar J, Verhagen S, Wolff A, Engels Y, Crul B, Vissers K. Changed Patterns in Dutch Palliative Sedation Practices After the Introduction of a National Guideline. Arch Intern Med. 2009;169(5):430-437.

Jhamb M, Argyropoulos C, Steel J, Plantinga L, Wu A, Fink N, et al. Correlates and Outcomes of Fatigue among Incident Dialysis Patients. Clin J Am Soc Nephrol. 2009;4:1779-1786.

Miskulin D, Bragg-Gresham J, Gillespie B, Tentori F, Pisoni R, Tighiouart H. Key Comorbid Conditions that are Predictive of Survival among Hemodialysis Patients. Clin J Am Nephrol. 2009;4:1818-1826.

Tamura M, Goldstein M, Perez-Stable E. Preferences for dialysis withdrawal and engagement in advance care planning within a diverse sample of dialysis patients. Neprhol Dial Transplant (serial online). September 10, 2009.

Wong CF, McCarthy M, House MLP, Williams PS. Factors Affecting Survival in Advanced Chronic Kidney Disease Patients Who Choose Not to Receive Dialysis. Ren Fail. 2009;29:653-659.

Vecchio L, Locatelli F. Ethical Issues in the Ederly with Renal Disease. Clin Geriatr Med. 2009;25(3):543-553.

Von Roenn J, von Gunten C. Are We Putting the Cart Before the Horse? Arch Intern Med. 2009;169(5):429.

Zhang B, Wright A, Huskamp H, et al. Health Care Costs in the Last Week of Life Associations With End-of-Life Conversations. Arch Intern Med. 2009;169(5)480-488.

Gorman L. Compendium of Treatment of End Stage Non-Cancer Diagnoses - Renal. Kendall-Hunt Publishing Company; 2005.
*Available for purchase from the Hospice & Palliative Nurses Association

HealthDay: News for Healthier Living. Dialysis' Drawbacks Outweigh Benefits for Some Older Patients. Available at http://healthday.com/Article.asp?AID=631884. Accessed October 19, 2009.

NephrOnline. Suffering caused by dialysis for nursing home seniors may outweigh its benefits. Available at http://nephronline.com/news.asp?N_ID=3218. Accesssed October 15, 2009.