Why Advance Directives Matter: A Chronic Illness Therapist's Perspective
With more than 14 years of experience as a Clinical Social Worker in both acute and outpatient healthcare settings, an important part of my work has been educating patients and families about advance care planning and supporting them through these conversations. Although many people have heard the term "advance directive," there is often confusion about what it is and when it should be completed.
What Is an Advance Directive?
An advance directive is a legal document that you complete while you have decision-making capacity. It allows you to choose a surrogate healthcare decision maker and communicate your wishes about your medical care. With an advance directive in place, you can plan ahead for potential unexpected situations where you may not be able to speak on your own behalf. This may include situations such as being temporarily unconscious after an accident, or more permanent situations such as a severe stroke that leaves you cognitively incapacitated. In California, an advance directive is legally valid if it is either notarized or witnessed by two qualifying witnesses.
While many people associate advance directives with aging, serious illness, or end-of-life care, the reality is that every adult over the age of 18 can benefit from having one.
“I’m Healthy. Do I Really Need an Advance Directive?”
Throughout my career, when people shared that they did not have an advance directive, I often heard responses such as:
“I don’t need one yet.”
“I’m not sick enough to consider one.”
“I’m too young to worry about that.”
While I respect an individual’s autonomy and right to make their own healthcare decisions, I also want to ensure that people understand the benefits of having an advance directive, even while they are young and healthy. I may ask a few questions like, “Well, if you experienced an unexpected accident or medical emergency tomorrow that left you unable to speak for yourself, would your loved ones know your wishes? Would they know what types of medical treatments or interventions would or wouldn’t be acceptable to you? Would they understand what quality of life would be acceptable or unacceptable to you if you experienced a life-changing injury or illness?”
These are difficult questions to consider, especially when you’re healthy. However, avoiding these conversations can leave the people closest to you in an incredibly challenging position if the unthinkable happened and they are asked to make decisions on your behalf.
Why Advance Directives Matter for People Living With Chronic Illness
For individuals living with chronic illness, advance care planning can be especially important.
Living with a chronic condition often means navigating uncertainty, medical appointments, treatment decisions, and changes in health over time. Having an advance directive in place can help ensure that your values and preferences are known to your loved ones, especially during times when you may not be able to advocate for yourself.
An advance directive is not about expecting the worst. It’s about making your wishes known and reducing uncertainty for both you and the people who care about you.
Who Makes Healthcare Decisions If You Don't Have an Advance Directive?
Many people assume that if they are married, their spouse will automatically be the person making healthcare decisions for them. Others assume that their parents, adult children, or closest family member would automatically have this role.
In California, if you have not completed an advance directive, a healthcare provider may select an appropriate surrogate decision maker from a group that can include a spouse or domestic partner, adult child, parent, sibling, adult grandchild, another adult relative, or even a close personal friend. Unlike some states, California law does not automatically prioritize one relationship over another. Instead, the decision is based on who has demonstrated care and concern for the patient, understands their values and preferences, and is willing and available to serve as their surrogate.¹
The law is a bit more nuanced than many people realize, making it important to consider completing an advance directive. In an ideal situation, if someone does not have an advance directive, their loved ones would agree about who should act as their healthcare decision maker and what decisions should be made. However, disagreements can occur, and those disagreements can create additional emotional stress for your loved ones during an already difficult time.
Starting these conversations may feel uncomfortable, but they are ultimately an act of care for yourself and for the people you love. If you’d like to begin this conversation with a loved one, PREPARE for Your Care offers free tools and resources to help individuals clarify their healthcare wishes and have meaningful conversations. You can also speak with your healthcare provider for additional guidance.
Navigating the Emotional Side of Advance Care Planning
While completing an advance directive can’t prevent a medical crisis, it can provide clarity. Taking the time to have these conversations now can reduce uncertainty, ease the burden on your loved ones, and help ensure your healthcare decisions reflect what matters most to you. Whether you're living with a chronic illness or are simply planning ahead, advance care planning is one meaningful way to care for both yourself and the people you love.
My goal as a therapist is to help make uncomfortable topics more comfortable to discuss.
Worries and anxiety around advance directives, chronic illness, caregiving, anticipatory grief, and uncertainty are all deeply personal experiences. You do not have to navigate the emotional impact of these challenges alone.
I’m Jaclyn Staubach, a Licensed Clinical Social Worker based in Orange County, California. With a background in palliative care, behavioral health, and oncology medical settings, I bring specialized experience supporting individuals navigating health-related stress, chronic illness, caregiver burnout, and major life transitions. I also understand the emotional demands of high-pressure careers through my experience as a frontline healthcare worker.
If you’re experiencing anxiety or depression related to chronic illness, caregiving, or navigating changes in your health, therapy can provide a space to process these experiences.
If you would like to learn more or schedule an initial session, please contact me.
References
¹ Coalition for Compassionate Care of California. New Surrogate Decision Maker Law. (2023)
Disclaimer
The information shared in this article is intended for educational purposes only and should not be considered legal advice. Laws and requirements related to advance directives may vary by state and can change over time. If you have questions about completing an advance directive, your specific legal circumstances, or how these documents apply to your situation, consider speaking with a qualified legal professional or healthcare advisor.