Medical Decision-Making for Individuals With Chronic Disease

Takeaways

• Establishing advance health care directives, health care powers of attorney, and HIPAA authorization forms allows individuals with chronic conditions to control their medical decisions and information, even if they become unable to communicate.
• These documents provide peace of mind for patients and their families by offering clarity, reducing stress, and ensuring medical care aligns with personal values.

Living with a chronic health condition often means navigating a complex health care system, managing ongoing treatments, and making difficult medical decisions. For many, the uncertainty of how their health may progress raises important questions: What will happen if I can’t make my own health care choices? Who will speak for me if I become unable to express my wishes?

The answers lie in legal documents such as advance health care directives, health care powers of attorney, and HIPAA authorizations. These tools allow people to maintain control over their care and ensure their voices are heard, even if they cannot advocate for themselves.

Why These Documents Matter

Chronic health conditions such as kidney disease, diabetes, or cancer can sometimes lead to sudden complications or long-term changes in decision-making ability. Planning ahead reduces stress for patients and families by providing clarity and direction in critical moments.

Without formal documentation stating a patient’s wishes, medical professionals are generally obligated to provide life-sustaining treatment in emergencies. Family members may face a similar struggle with making difficult choices, sometimes leading to disagreements or legal disputes.

Advance health care planning empowers individuals to take charge of their health care journey and removes the guesswork for loved ones and medical professionals.

Advance Directive

An advance health care directive, sometimes called a living will, is a written document that outlines your preferences for medical care if you become unable to communicate. It can address issues such as:

• Life-sustaining treatment preferences. Do you want to be placed on a ventilator if you stop breathing?
• Artificial nutrition and hydration. Would you want to use feeding tubes or IV fluids if you become unable to eat or drink?
• Resuscitation orders. Do you want CPR performed if your heart stops?
• Pain management. Should comfort and quality of life take priority over aggressive treatment?

Advance directive forms can be as detailed or as broad as you want. You can also update them as your health condition or beliefs change.

Health Care Power of Attorney

A health care power of attorney (POA), sometimes called a medical POA or health care proxy, designates a trusted person, often a spouse, family member, or close friend, to make medical decisions on your behalf if you become unable to make decisions or cannot express your wishes.

The chosen representative, known as a health care agent or proxy, can speak with doctors and other providers about treatment options. They can also access medical records to make informed decisions. An agent can consent to or refuse medical treatments based on your expressed wishes and advocate for your preferences in hospitals or other care settings.

Unlike an advance directive, which provides specific instructions, a medical POA allows flexibility. This is especially helpful when situations arise that aren’t clearly outlined in an advance directive.

HIPAA Authorization Form

Advance directives and health care powers of attorney focus on decision-making. The Health Insurance Portability and Accountability Act (HIPAA) form focuses on protecting your medical information.

Without written authorization, health care providers may be unable to share details about diagnoses, treatments, or test results, even with close family members. A HIPAA authorization form allows you to designate specific people, such as a health care proxy, spouse, or children, who can access your medical records.

Having a HIPAA authorization form ensures that the people you trust have the information they need to make informed health care decisions on your behalf.

Putting These Documents in Action

Ensure that your health care documents reflect your wishes and will function as you intend by:

• Reflecting on your values. Consider what quality of life means to you and what treatment decisions you would or wouldn’t make.
• Talking with your loved ones. Explain your preferences with family so they understand your choices.
• Choosing your health care proxy carefully. Pick someone who understands your values, can handle stress, and will advocate firmly on your behalf.
• Completing all applicable health care forms. Each state has its own legal guidelines for advance directives, POAs, and HIPAA forms.
• Reviewing your health care documents with professionals. Discuss your documents with your doctor and an attorney to ensure they are clear and valid.
• Sharing copies of your signed documents. Give signed copies of these documents to your proxy (agent), family members, and doctors. If possible, upload them into your electronic medical record.
• Reviewing and updating these documents regularly. Revisit your documents every few years or after major health changes.

Peace of Mind Through Planning

For individuals living with chronic illnesses, uncertainty about the future can be daunting. Taking proactive steps to document health care wishes can provide reassurance that your values will guide your medical care, even if you cannot speak for yourself.

By planning ahead, you not only protect your autonomy but also provide your loved ones with a clear path forward, thus reducing stress, preventing conflict, and ensuring that your medical care reflects what matters most to you.

For additional reading on topics related to health care planning, check out the following articles:

• How Life Care Planners Help Individuals With Disabilities
• Plan Your Treatment Before a Mental Health Crisis
• Building an Estate Plan for Adult Children With Disabilities