Dedicated to End-of-Life Care for Kidney Patients
Mission: To promote effective interchange between patients, families, caregivers, payers, and providers in support of integrated patient-centered end-of-life care of chronic kidney disease (CKD) patients.

 

Advance Care Planning

Advance care planning allows competent individuals to plan the type of care they desire to receive at the end of their lives, as well as appoint people to assist in carrying out these decisions when they are no longer mentally capable. While an important aspect of advance care planning involves advance directive documents, such as a living will and a health care proxy, the documents themselves are only part of the process. It is crucial that all individuals be given the opportunity to exercise their rights to complete advance directive documents. In doing so they also have the right to be thoroughly and accurately informed about the documents and the medical information they will need should they elect to complete them. In addition, completing the documents is not sufficient, in that individuals should be encouraged to engage in extensive conversations with their family, significant others and health care providers about their choices, as well as the values and beliefs that underlie them.

The Advance Care Planning Policy is a template to assist dialysis facility staff in developing advance care planning policies and procedures.

There are several tools available to help an individual plan for the future.

  • Hospitals, hospices to receive CD with advance directive in 20 languages
  • Caring Connections is a program of the National Hospice and Palliative Care Organization (NHPCO). It is a national consumer engagement initiative to improve care at the end of life, supported by a grant from the Robert Wood Johnson Foundation. It provides free resources and information to help make decisions about end-of-life care and services as well as free state-specific advance directive documents and instructions.
  • The POLST Form is a standardized form designed to convert wishes for life-sustaining treatments into medical orders. It was created to ensure that treatment wishes are honored in the event that a patient/resident is unable to speak for himself or herself. Surrogate decision-makers may communicate treatment preferences on behalf of incapacitated individuals so the form can be used for those who lack decisional capacity. Although the POLST program was originally developed in Oregon, programs based on the POLST paradigm are now used in West Virginia and Washington as well as parts of Wisconsin, Pennsylvania, New York, Utah, New Mexico, Michigan, Georgia and Minnesota.

Remember it’s not just about completing the forms, a living will and a health care proxy, but sharing values and beliefs that underlie them.

  • Aging with Dignity, The non-profit organization that created the popular "Five Wishes" advance directive, also offers a pediatric document entitled "My Wishes."  Developed by child life professionals and available nationally, "My Wishes" assists children in communicating how they want to be treated if they become very sick.
  • Aging with Dignity includes information about the popular “5 Wishes” document, which helps people communicate their wishes about end-of-life care. States continue to adopt "5 Wishes” as a legal document; check to see if your state has adopted it.
  • The Center for Practical Bioethics’ Caring Conversations booklet, available in English and Spanish, is a consumer education initiative that helps individuals and their families share meaningful conversation while making practical preparations for end-of-life decisions.
  • Caring Conversations for Young Adults, also from the Center for Practical Bioethics, provides a starting point for young adults and their families to talk about topics like organ donation, do-not-resuscitate orders, and serious illness.
  • Advance Care Planning: For Dialysis Patients and Their Families was developed by the Mid-Atlantic Renal Coalition (Network 5) and the Academy for Educational Development to help dialysis patients plan for their care. Download an order form.
  • Consumer’s Tool Kit for Health Care Advance Planning is provided by the American Bar Association’s Commission on Law and Aging. This tool kit includes 10 tools for health care planning.
  • The National Kidney Foundation (NKF) has a website that offers valuable information to educate patients on advance directives. The Foundation also has a brochure, available in its professional publications catalog, entitled Implementing Advance Directives: Guidelines for Dialysis.

Educational tools beneficial for staff:

  • The Literature Review on Advance Directives is not just a summary of research over the last 20 years, but a thoughtful and comprehensive descriptive analysis of the issue in American culture. It contains more than 360 citations.
  • The National Kidney Foundation's Council of Nephrology Social Workers has prepared a 1-page hospice and dialysis care resource to help educate social workers and others on Medicare coverage for hospice services while receiving dialysis.
  • Understanding End-of-Life Care: The Social Worker's Role is an online course developed and offered by the National Association of Social Workers. Social workers can earn CEUs for participation.
  • Network 5’s End-of-Life Module is an educational tool that provides a complete in-service training session which defines palliative care and helps participants identify end-of-life issues that might arise in the facility as well as possible resources and support.
  • 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.