A Public Service Announcement About Advance Medical Directives

Because of my husband’s rare disease, I have spent significant time and effort advocating for his care. Since the onset of his aHUS, his job has been to follow doctors’ orders. Mine is to question them — and those of the insurance companies, pharmacists, and others.

The role came naturally to me, as I was used to ordering the supplies, scheduling the work, and shopping the insurance for our business. So, I questioned, “Is this the only solution? The best one? Can we get it faster or cheaper? What do you need from me? Should I fax or email the forms? How can I expedite this? What is the warranty?”

Likewise, the authority was naturally granted to me as his wife, his legal and emotional partner. I was already named on his ICU admission form and insurance card. So, the doctors, nurses, and administrators asked, “Will you authorize this treatment? Are you willing to have him transferred to another hospital? Has he filled out the forms? Can you provide the insurance information?”

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January 17, 2022 by Annie Dixon

Finding Pleasure in the Paperwork

Deja vu

Last month, my brother called on my on-the-job-training as my husband’s advocate. A fiercely independent fellow living alone in the next state, he found himself in the hospital without a natural or automatic advocate. We talked on the phone every day about the “what ifs” of his situation and I promised I would look out for him.

But then I had to get serious with him. It broke my heart, but because of my husband’s aHUS and related immune system concerns, we couldn’t just hit the road and be there with him like we had years ago. I was willing to speak for my brother, but had no legal authority to do so, and it would be even harder from afar. We needed to make it official.

My brother’s keeper

Turns out, his little county hospital has dealt with this before. The “Patients and Visitors” tab on the website includes a page with all sorts of advance medical directive forms. I downloaded the “Appointment of Health Care Agent” form and printed it three times. I filled one out naming me as the agent and his son, who lives in a more distant state, as the alternate. I filled the next one out in the reverse order, and left the third form blank for him to fill out any way he wanted.

I sent all three forms via overnight delivery to my brother, care of the ICU nurses station, along with a pair of reading glasses. Then, I called the hospital social worker, who arranged for his signature to be notarized and faxed me a copy of the form.

My brother opted to name me as his advocate and his son as his alternate. Emotionally, this step opened up communication among the three of us to discuss his illness and care options. Legally, this form gave all of us access to medical files and consultations. Socially, this experience made me aware of the importance of health directives for everyone.

Lessons learned and homework assigned

Single adults like my brother are particularly vulnerable in the medical system. Health Insurance Portability and Accountability Act regulations are designed to protect a patient’s privacy, but can also be a barrier to loved ones who would act in their best interest. Siblings, and even parents and adult children, have no right to medical records or decisions unless the patient specifically grants it.

Complicated relationships can complicate medical decisions. A significant other has no legal standing, no matter the length or depth of the romance. Likewise, a marriage that still exists on paper after it has dissolved in hearts and home remains a legal entity. A beloved can be excluded and an ex can wield medical authority unless the patient specifies otherwise.

Even happily married couples risk being unable to speak for themselves or each other if both are sick or injured at the same time. Naming an alternate health advocate in advance is a prudent move for everyone.

Whatever your situation, I encourage you to look up the website of your local hospital and download the forms for advance medical directives. Decide who your trusted advocates should be, discuss possible scenarios with them, and make it official. Taking care of the paperwork now will help your loved ones take care of you, should you ever need them to.

Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.