Advance Care Planning Initiative - #ISaidWhatIWant

Nearly 20 nursing specialty organizations representing more than 700,000 nurses have joined together to promote advance care planning (ACP), encouraging nurses to lead by example and establish their own advance care plan. Even though most nurses are familiar with ACP, many do not have a plan in place, and this initiative is to help nurses create their ACP.

The #ISaidWhatIWant social media initiative was developed in response to the work done at the 2017 Palliative Nursing Summit hosted by the Hospice and Palliative Nurses Association, which brought various nursing specialties together to develop a collaborative nursing agenda regarding advance care planning, pain and symptom management, and transitions and coordination of care. Following the summit, participating organizations formed work teams to develop specific programs that will ultimately seek to influence public health by engaging nurses in targeted initiatives to enhance the care and outcomes of patients and their families.

ACP is a process for patients and their families to discuss their wishes and goals of care for treatment and end-of-life care, clarify related values and goals, and state preferences through written documents and medical orders. This process can start at any time and be revisited periodically but becomes more focused as health status changes. In situations where a patient's decision-making capacity is limited, healthcare providers turn to family members to make decisions. When there have been no ACP conversations between the patient and family, family members are left to make decisions regarding life-sustaining treatment without input from the patient or with little knowledge of the patient's wishes.


Advance Care Planning Resources

There are many online resources available to assist with advance care planning.  Below are links to several resources that can help nurses create a plan. We encourage you to look through these resources, and choose the one that works best for you.

Advance Care Planning Decisions is a site offering videos and resources:  www.acpdecisions.org
American Association of Retired Persons (AARP) offers basic resources on caregiving:  www.aarp.org/caregiving/basics 
American Bar Association offers a toolkit for health care advance planning:  www.americanbar.org    
The American Cancer Society web site includes information about advance directives:  www.cancer.org/treatment/end-of-life-care.html
Begin the Conversation
is a site created by the Lower Cape Fear Hospice in Wilmington, NC:  www.begintheconversation.org
Caring Info is a program of the National Hospice and Palliative Care Organization: www.caringinfo.org  
The Centers for Disease Control publishes a list of selected resources for ACP:  www.cdc.gov/aging/pdf/acp-resources-public.pdf
The Conversation Project is an initiative of the Institute for Healthcare Improvement:  https://theconversationproject.org  
Defining Hope is a documentary feature about people weighing what matters most at a critical time:  https://hope.film  
Five Wishes is an easy-to-use legal advance directive document available in a variety of languages: https://agingwithdignity.org/five-wishes.php
Make Your Wishes Known is an online decision aid to help individuals prepare: www.makingyourwishesknown.com
My Directives offers both online and mobile app options for advance directives: https://mydirectives.com
National Healthcare Decisions Day (April 16) -  National initiative that encourages individuals to express their wishes:  http://www.nhdd.org
National Physician Orders for Life Sustaining Treatment (POLST ) Paradigm provides materials for planning:  http://polst.org  
PREPARE For Your Care is a step-by-step program with video stories to help you prepare. https://prepareforyourcare.org
Respecting Choices is an internationally-recognized, evidence-based program that addresses the ACP process.  http://respectingchoices.org 

Additional Resources

Below is a list of other resources related to advance care planning.
 

 

Participating Organizations in the Campaign

  • American Association of Critical Care Nurses (AACN)
  • American Association of Nurse Practitioners (AANP)
  • American Nurses Association (ANA)
  • American Psychiatric Nurses Association (APNA)
  • American Society for Pain Management Nursing (ASPMN)
  • Association of Pediatric Hematology/Oncology Nurses (APHON)
  • Association of Rehabilitation Nurses (ARN)
  • Emergency Nurses Association (ENA)
  • Gerontological Advanced Practice Nurses Association (GAPNA)
  • Hospice and Palliative Nurses Association (HPNA)
  • Infusion Nurses Society (INS)
  • National Association of Home Care and Hospice (NAHC)
  • National Association of Clinical Nurse Specialists (NACNS)
  • National Association of Pediatric Nurse Practitioners (NAPNAP)
  • National Black Nurses Association (NBNA)
  • Nurses Organization of Veterans Affairs (NOVA)
  • Oncology Nursing Society (ONS)
  • VITAS 

Resources for the #ISaidWhatIWhat Initiative 

Below is a list of resources created specifically for use during the #ISaidWhatIWant Initiative. 
 

 

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