Advance care planning (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.

In situations where a patient’s decision-making capacity is limited, healthcare providers turn to family members to make decisions. When no ACP conversations have occurred between patients and their families, 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.

ONS has joined with nursing specialty organizations representing more than 700,000 nurses and other healthcare professionals to promote those ACP conversations among patients and families. The initiative encourages all nurses to lead by example by establishing their own ACP. 

The initiative, tagged “#ISaidWhatIWant,” was developed in response to the work done at the 2017 Palliative Nursing Summit hosted by the Hospice and Palliative Care Nursing Association, in which ONS participated. The summit brought nurses together from various specialties to develop a collaborative nursing agenda regarding ACP, pain and symptom management, and transitions/coordination of care. Following the summit, participating organizations formed work teams to develop specific programs to influence public health by engaging nurses in targeted initiatives to enhance the care and outcomes for patients and their families. ONS has members on the pain and advanced care planning work teams.

#ISaidWhatIWant starts with nurses. Although all members of the interprofessional team provide patient care and engage in treatment discussions, because of the amount of time and ongoing conversations that nurses routinely have with patients, they are in a unique position to champion ACP.

“What better way for nurses to demonstrate the value of ACP than to lead by example?” ONS President Laura Fennimore said. “Say what you want and establish your own ACP—and discuss your plan with families and loved ones. If you have already made an ACP, help your patients and the public realize the true value of ACP and advance directives. Tell your family, friends, and followers on social media why you believe in ACP using the hashtag #ISaidWhatIWant.”

Fennimore emphasized the importance of the patient and family discussions that ACP can spur, which give them an opportunity to say the things that matter to them, including expressions of hope and meaning in life. Patients find that having their wishes known and sharing them with their family can be a great gift to family members if they ever have to make difficult healthcare decisions on your behalf. 

HPNA’s Position Statement on Advance Care Planning is available at ONS also discusses the need for family conferences to address patients’ needs and goals for care in its Palliative Care for People With Cancer position statement.