Care that reflects your wishes: Why goals-of-care conversations matter

Many people worry about whether they’ll receive the healthcare they want and need. Goals-of-care conversations help ensure that treatment aligns with one’s values, priorities, and wishes, including at the end of life.

While chemotherapy, artificial ventilation or nutrition, CPR, and other intensive treatments can help prolong and even save life, at times they do so at the expense of one’s quality of life — and conflict with one’s desires for their end-of-life experience.

However, new research shows that when goals-of-care discussions are held — and documented well — people are far less likely to receive aggressive and unwanted care in their final days. The study focuses on patients with cancer in particular, but its findings are far-reaching.

The importance of goals-of-care conversations

Goals-of-care conversations are ongoing discussions between individuals and their healthcare providers about what matters most — especially when facing a serious illness or a significant change in health. These conversations help align treatment more closely with one’s values and priorities.

Discussions can explore:

• What is most important to you right now?
• Are you hoping to extend life as long as possible, focus on comfort, or find a balance between the two? What trade-offs are you willing to make?
• What treatment options align with your current goals, and which might not?
• How involved would you like your loved ones to be in your care and decision-making?

In their analysis, researchers focused on eight components of end-of-life discussions, such as patients’ understanding of their prognosis, acceptable trade-offs, and their goals and fears. 

Of these topics, discussing fears was the least common. As lead researcher Melissa K. Greene, MD,  MS, reflects: “Asking, ‘What are your biggest fears? What kinds of things are you most scared of?’ They seem like simple questions. But the data show [fear] is one of the least broached topics in these conversations.”

While wide-ranging and ongoing goals-of-care conversations can greatly improve one’s healthcare experience, they don’t happen early or often enough. And at times, they aren’t well documented by the clinician — limiting their value and impact.

Why documentation matters

It’s not enough to simply have these care conversations or assume that everyone involved remembers it the same way. Dr. Greene argues that if a clinician has a goals-of-care conversation with a patient but doesn’t document it, then “it’s almost like it didn’t happen.”

Documenting specific details about a patient’s goals, wishes, and preferences can substantially reduce the aggressive end-of-life care they receive. In fact, researchers found that addressing and documenting even just one topic “can reduce aggressive end-of-life care more than 10%, and addressing seven or more can decrease it more than 20%.”

Diligent record keeping also ensures that the rest of the care team, who may not have been part of these discussions, stay on the same page.

Putting it into practice — as individuals and as providers

Turning these insights into action requires collaboration between individuals and health care professionals. Individuals and caregivers can be proactive in initiating goals-of-care discussions and advocating for their responses to be documented. 

• Prepare questions before your next appointment.
• Strengthen your voice and learn the basics of self-advocacy in healthcare settings.
• Reflect on and plan ahead for your future end-of-life care so that you are prepared to have important conversations with your providers.

Healthcare professionals can also make a tangible difference in the lives of the people they serve by making space and time for goals-of-care conversations and documenting them well. 

• Initiate more of these conversations, especially with patients experiencing a significant illness or change in health, and ensure responses are captured for future reference.
• Practice asking questions such as “What are your fears?” and role-playing with colleagues to become more comfortable having these conversations.
• Enroll in our Advance Care Planning Certificate Course* co-hosted with the Goals of Care Coalition of New Jersey. This virtual, self-paced, and accredited course will equip you to facilitate care planning conversations rooted in patient goals and wishes.

Open and honest communication has the power to transform the end-of-life journey. That challenge — and opportunity — begins with asking the right questions, listening deeply, and making sure that what matters most is clearly recorded.

*In support of improving patient care, this activity has been planned and implemented by i3 Health and GOCCNJ. i3 Health designates this enduring material for a maximum of 1.5 AMA PRA Category 1 Credits™ for physicians, 1.0 ANCC contact hour for nurses, 1.0 ACPE CE credit for pharmacists, and 1.0 general ASWB ACE credit for social workers.