In the 2023 movie, Barbie recently asked: “Do you guys ever think about dying?” If you haven’t, you’re not alone, but you probably should.
End-of-life discussions are essential to providing patients, families, and providers the knowledge to respect and adhere to dying wishes. Yet, only one in three adults in the United States have any type of written instructions for their end-of-life care.
What is Advanced Care Planning?
Advanced care planning (ACP) is preparing for end-of-life medical care when someone is too ill to communicate their care preferences. Plans that are documented in writing are called advanced directives. Some advanced directives are legally binding, such as a living will or durable power of attorney for health care. They can specify someone’s health care proxy (e.g., spouse, parents, children, close friend) and do-not-resuscitate orders, which outline what should or shouldn’t be done if they can’t make their own decisions.
While ACP may be a scary and emotionally taxing process, it can also foster meaningful conversations between patients, loved ones, or providers. ACP allows everyone involved to not only consider a person’s wishes for their medical care, but their housing, assets, and finances, too.
In situations like the COVID-19 pandemic, climate disasters, or sudden medical episodes, advanced directives offer some comfort and guidance amid the scary uncertainty.
Benefits of Advanced Care Planning
The most significant benefit of ACP is that it promotes patient-centered care. Patients have more autonomy and control of how, where, and with whom they spend their last days. It helps the patient feel valued and like they’re dying with dignity. It increases the likelihood that a patient’s preferences are understood and respected, reducing the burden on families to make blind decisions for their loved ones.
ACP can also reduce the cost and improve the quality of end-of-life care for both families and hospitals. One study showed that having an advanced directive was associated with 69% less risk of longer hospitalizations. For patients in their last week of life, patient-physician end-of-life care discussions resulted in a 36% cost decrease, due to fewer expensive in-hospital and intensive care unit deaths.
Other Considerations with Advanced Directives
Advanced directives are not all legally binding, as medical appropriateness and feasibility limit providers. This may result in some care being inconsistent with a patient’s stated wishes. Nevertheless, ACP is still a valuable and important process to consider.
For those without an advanced directive, 46 states have “default surrogate consent laws” that automatically determine who makes medical decisions on a patient’s behalf in emergencies, such as a spouse or parents. Some states even expand that surrogacy to health care workers, such as nurses in Nevada and physician associates in New York.
Talking About Death
Despite the benefits of ACP, no one likes to do it.
Interestingly, we are willing to discuss being cremated, becoming an organ donor, or even debating right to die legislation. But we shy away from deeper, more logistical end-of-life discussions with our loved ones.
Given the emotional difficulty, there are lots of public resources and toolkits available to help patients, families, and providers start the conversation. Physicians can guide their patients towards the care path best aligned with their values and explain the different medical options. As a result, research shows that bereaved family members who completed an advanced directive have greater usage of hospice services and fewer concerns about physician communication.
Barbie’s question remains relevant: Are we ready for the end?
As the holiday season approaches, it’s an opportunity to gather with your loved ones and start ACP. Embracing the reality of mortality can help us make the most of our time and appreciate the present, regardless of our age. Timing also matters — each person should share this information when they’re ready, at their comfort level.
If we truly want to honor the wishes of our loved ones and patients, these conversations are necessary and shouldn’t be avoided. Barbie’s question reminds us that it’s up to of all of us to ensure we are prepared.
Research for this piece was supported by Arnold Ventures.
