Advance Care Planning: Making Care Decisions Now and for the Future

by Mary Lynne Knighten

A rainy Friday night found me—the nurse in the family—in the Emergency Room with my mother-in-law while she awaited word about her husband, who was rushed in with a potential heart attack. While we were waiting, I asked her if she and “The Daddy,” as she fondly called him in her lilting Irish brogue, had ever discussed what his wishes were if he stopped breathing and his heart stopped beating. With a catch in her voice, she responded: “No, but I want everything done for him.”

This is a fairly typical response when those decisions must be made and people have not had conversations in advance with loved ones about their healthcare wishes and goals.

Working your way through. Are you one of the 70% of people who does not have an advance care plan?

Advance Care Planning (ACP) is the process of planning for future medical care. ACP is an ongoing course of action whereby patients, family, and healthcare providers consider the patient’s goals, preferences, values, and beliefs, discuss how this informs their medical care now and in the future, come to mutual understanding of how everyone involved honors the patient’s wishes to meet their needs, and document future healthcare choices. 

Planning in advance for decisions in the moment. ACP can begin at any age or stage of life. Whether a person faces an acute illness, a progressive, chronic condition, or terminal disease, ACP can help alleviate unnecessary suffering, improve quality of life, and provide insight into decision-making challenges a person experiences.

ACP should include an examination of the patient’s knowledge, fears, wishes, and needs—not just medical issues, but life goals.

Ensuring that wishes are honored and needs are met.The goal of ACP is to ensure that patients’ healthcare reflects their goals and values by engaging them (and family members) in conversations to review their condition, the future course of their disease, and their prognosis. Considering choices and what should and should not be done is the core of ACP.

Over time, loved ones may need to make difficult decisions in the best interest of the patient; therefore, a surrogate decision-maker should be chosen. It is important that patients express their wishes and goals for care and that the surrogate understands their preferences.

Tools for living and planning for the future. Talking about your health and how you want your life to be isn’t easy…but it’s one of the most important conversations you and your family will ever have. The Conversation Project, a collaboration with the Institute for Healthcare Improvement, provides a toolkit to help loved ones communicate about future healthcare needs and bridge the gap between what people say they want and what actually happens. 

The Conversation Starter Kit is an easy guide to tell someone what you want, or to help someone else get ready to talk.

The most important outcome of having “The Conversation” is that a person’s family, surrogate decision-maker, and care providers understand the person’s attitude about life, death, dying, and what care they want in various scenarios that could occur.

Another tool is the Patient & Family Checklist from the ACP Decisions website. The website features videos and apps for those who have difficult reading, a section on evidence-based research, and resources in a variety of languages.

An Advance Directive (AD) is not the same thing as ACP, but is another tool that can support it. Advance Directives are legal tools that provide guidance about the type of care and treatment you would want and designates a surrogate decision-maker should you be unable to speak for yourself. 

A Physician Order for Life-Sustaining Treatment (POLST), known by other acronyms in different states, is a medical order for the specific medical treatments you want in the event of an emergency. Only patients who have a serious illness, progressively declining chronic disease, or are near the end of life should have this form, which is completed by a physician or nurse practitioner. A POLST form does not replace an AD, but is complementary.

Take heart. Research shows that ACP has many benefits for patients, their loved ones, and care providers, including:

• Alignment of care with patients’ wishes.

• Improved quality of life. 

• More compliance with honoring patients’ end-of-life wishes.

• Decreased hospitalizations and in-hospital deaths.

• Increased use of supportive care, palliative care, and hospice services.

• Reduced use of futile end-of-life care.

• Lower risk of stress, anxiety, and depression in surviving relatives. 

Conversations focused on your needs and wishes can unburden family and medical providers from having to guess what you need and enable them to focus on making happen what you want.

Excerpt taken from Advance Care Planning: Making Care Decisions Now and for the Future CareNote.