Setting Up an Advance Healthcare Directive

A Guide for Adults with Type 1 Diabetes and Their Loved Ones

What Is an Advance Healthcare Directive?

An Advance Healthcare Directive (AHD) is a legal document that allows you to:

• State your medical wishes in case you’re unable to communicate them yourself.
• Name a trusted person (called a healthcare agent or proxy) to make decisions on your behalf.
• Provide specific instructions about treatments you do or do not want (such as resuscitation, feeding tubes, or ventilators).

For people with Type 1 diabetes, this can be especially important. You may want to include instructions about insulin use, glucose monitoring, DNR preferences, or management of hypoglycemia or complications in later stages of life or during hospitalization.

Why It Matters

Without a directive, medical providers are legally required to use all possible life-saving measures, even if that’s not what you would choose. An AHD helps ensure your voice is heard—even if you can’t speak for yourself.

It also relieves stress on family and caregivers, who may otherwise be asked to make tough decisions without knowing what you’d want.

What Should Be Included?

• Your healthcare proxy/agent (and a backup)
• Your treatment preferences for:
  • CPR or DNR
  • Artificial nutrition or hydration
  • Dialysis or mechanical ventilation
  • End-of-life comfort care
  • Diabetes-specific concerns (e.g., insulin withholding, CGM/pump continuation, hospice care)
• Organ donation or autopsy wishes
• Any religious or cultural considerations

Where to Get the Forms

By State (U.S.):

Each U.S. state has its own advance directive form. You can find them for free here:

• CaringInfo (by the National Hospice and Palliative Care Organization):https://www.caringinfo.org/planning/advance-directives/
  ✅ Printable PDFs by state
  ✅ Updated regularly
  ✅ English and Spanish options available

• AARP State Advance Directive Forms:
  https://www.aarp.org/caregiving/financial-legal/free-printable-advance-directives/

How to Set It Up

1. Download your state’s form (see links above)
2. Fill it out with as much detail as you’re comfortable with.
3. Talk to your chosen agent about your wishes.
4. Sign and witness/notarize it (depending on your state’s rules).
5. Share copies with:
   • Your doctor(s)
   • Your healthcare proxy
   • Family members or caregivers
   • Any care facilities or hospitals

You can also upload your directive to your electronic health record (EHR) through your clinic or hospital portal.

Do You Need a Lawyer?

You don’t need an attorney to complete an advance directive in most states—but if you have complex wishes, concerns about family disagreements, or want to create a more detailed living will, a lawyer can help.

To find legal help:

• American Bar Association (ABA): https://www.americanbar.org/groups/law_aging/
• LawHelp.org (for free or low-cost legal aid in your state):
  https://www.lawhelp.org/
• State Bar Associations often offer referrals to elder law attorneys or estate planning lawyers.

Keep It Updated

Review your directive every couple of years, or when your health, preferences, or relationships change (the “Five Ds” rule: Decade, Diagnosis, Decline, Divorce, or Death of a loved one).

Current Research and Resources

• JAMA Internal Medicine (2021): Research shows that having an advance directive improves end-of-life outcomes and reduces unwanted interventions. Study summary
• National Institute on Aging: Advance Care Planning: Healthcare Directives
• American Diabetes Association (ADA): Recommends advance directives as part of comprehensive care planning, especially for older adults with T1D.
  ADA Older Adults Standards of Care, 2024

Final Thoughts

Creating an advance healthcare directive isn’t about expecting the worst—it’s about being prepared and staying in control of your care, no matter what happens. You deserve peace of mind, and so do the people who care about you.

Last updated 07/21/2025.