Experts have extolled advance care planning for all adults as a way to make sure their wishes and values would be honored should a medical crisis make it impossible for them to directly communicate their preferences for medical care and treatment.
But that recommendation may not be appreciated by those who are young and healthy. After all, they have their whole lives in front of them. They may feel invincible. It’s hard for them to imagine what circumstances would make their preferences for serious illness care relevant.
Thinking—and talking with one’s friends and family members—about future medical care, catastrophic medical events, cardio-pulmonary resuscitation, life-sustaining treatments and possible scenarios where one might need someone else to make life-and-death treatment decisions for them is not typically a favorite topic of conversation, especially for the young and healthy.
And yet a catastrophic event such as a car accident or brain injury or near drowning could happen at any time. And at that point loved ones might be asked what they know about the person’s values and preferences and ideas about quality of life—and what would be most important to them in such extreme circumstances. The challenge is how to persuade younger people that they, too, should engage with such questions.
What Is Advance Care Planning?
The process of exploring questions like these is called advance care planning (ACP). It does not follow an exact script—although there are guides to make it easier. It involves learning about the types of decisions that might need to be made and considering one’s responses to them ahead of time. What is important in their life? What do they like about their current life? What would make that life not worth living any longer? How might these decisions impact ideas about quality of life following a catastrophic medical crisis?
ACP addresses hypothetical future situations. Without an advance directive, one’s wishes in such circumstances are less likely to be recognized—or honored—and someone else’s opinions may be substituted.
This kind of consideration of treatment goals and personal values can result in completion of a legal document called an advance directive. Its most common forms are the living will, which specifies the treatments one might want or not want, and the healthcare proxy or durable power of attorney, which names someone to serve as an agent for advance care planning when one can no longer speak on their own behalf.
Just as important as the document is sharing this information in conversations with one’s designated future proxy and with other important people in one’s life. If a copy of that advance directive ends up in the health plan’s medical record, in the hands of one’s personal physician, and someplace easily accessible in an emergency—such as stuck to the refrigerator with a magnet—that could be very helpful to the medical team at the time of crisis.
Messaging Advance Care Planning
One group that has closely studied consumer attitudes in this area—how people understand advance care planning, goals of care conversations and values and preferences for serious illness care—as well as how best to craft messages to convey their importance—is the Massachusetts Coalition for Serious Illness Care. Its research from a national representative survey of 2,500 individuals, released in 2019, considers marketing strategies that might be most persuasive in getting people to act on ACP.
This research was done before the COVID pandemic hit, says executive director Anna Gosline. “COVID has changed a lot of people’s attitudes about ACP.” But before the pandemic, rates of engagement with ACP had been stagnant, despite widespread publicity by a variety of groups.
The Massachusetts research found clear segments of the population that thought alike, and that shared the same propensity to participate in ACP—or not. People may also think differently about these questions at different times in their lives. Some younger people have higher priorities in other areas of their lives, or feel overwhelmed by what’s going on in their lives.
Some feel disengaged from healthcare decision-making and others who might be described as self-reliant, skeptical or independent may be less likely to participate in ACP. Those who could be described as worried action takers or self-assured action takers are more likely to have completed advance directive documents describing their wishes for care or naming a proxy. And almost all of them have spoken to their loved ones about their wishes.
Accidents Can Happen to Healthy People
It is worth noting that while young people may believe these catastrophic medical crises wouldn’t happen to them, three of the most high-profile legal cases of recent decades involved young people in their 20s. Their cases made their names household words, helped to redefine important medical crisis legal principles, and highlighted the personal anguish their loved ones experienced because of the absence of clear legal advance directives.
- In 1975, Karen Ann Quinlan suffered irreversible brain damage at age 21 after mixing valium with alcohol. When her parents eventually requested disconnection of her cardiopulmonary ventilator or mechanical breathing machine, her doctors—under pressure from the Morris County, N.J., Public Prosecutor—refused. Later, following lengthy legal wrangling, the family got permission to remove the ventilator. But she remained alive in a coma with artificial nutrition and hydration support for another nine years.
- In 1983, 25-year-old Nancy Beth Cruzan ended up in a persistent vegetative state after a car accident near Carthage, Mo. When her parents asked doctors to remove her feeding tube, the hospital refused and her case went to the U.S. Supreme Court. The feeding tube was eventually removed and she died in 1990.
- Terry Schiavo went into cardiac arrest at her home in St. Petersburg, Fla., in 1990, at age 26. Resulting lack of oxygen caused massive brain damage, which put her in an irreversible persistent vegetative state. Several years later her husband tried to have her feeding tube removed, saying she would not have wanted to continue living this way. But her parents and several leading politicians disagreed, pushing her case over the next seven years through 14 appeals and numerous motions, including 4 writs to the U.S. Supreme Court, before permission was finally granted to allow her to die in a Florida hospice facility in 2005.
While these three landmark cases may reflect extreme situations, the resulting litigation over how to resolve them have helped other families to make life-and-death decisions on behalf of people who could no longer speak for themselves. But they also demonstrate that otherwise healthy young people can suddenly end up on life support. And their families, in the absence of clear advance direction from the patient, may disagree about what the person would have wanted. Can an adult be too young or too healthy to complete an advance directive? These cases suggest that the answer is no.
By providing education about the benefits or risks of different life sustaining treatment options, individuals can create a care plan that truly enables them to achieve their quality-of-life goals should a medical emergency arise.
Likewise, by documenting and distributing these care decisions, ACP ensures that individuals’ care preferences are understood and followed throughout their healthcare journey, creating a higher quality care experience overall. ACP protects individuals from receiving unwanted or unnecessary medical interventions and lets them decide on the kind of care you want. There is strong evidence that this kind of planning improves the experience of care for both the patient and their caregivers / family.
Iris Empower is a self-guided online application that simplifies the care planning process with guiding prompts, supporting information and pre-populated documents, creating universal access to ACP. Empower provides supporting information to help users make their future advance care planning, auto-generate state-specific advance directives and to sign, store and share their documentation with family members and care teams.
Empower can benefit the healthier member populations with no serious or chronic illnesses. Being prepared helps ensure family and medical teams know exactly what to do in situations should an individual be unable to speak for themselves.
Contact us to learn more about how Empower can benefit your member population.