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GUEST COLUMN LGBTQ and long-term care: Advanced directives
by Jacqueline Boyd

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Prior to the Supreme Court ruling in favor of marriage equality this June, LGBTQ couples were at risk when seeking health or aging services.

The lack of legal protection left same-sex couples very vulnerable when accessing health or aging services. Too often, medical systems sought parents or children to act as the decision-maker instead of the spouse, partner or trusted friend. While marriage equality establishes basic rules of conduct for health and aging institutions, it is not the complete solution.

As health changes, complex decisions arise. While dealing with the effects of disease or decline on the body, a person may not be capable of advocating for themselves. Even in the instance of voluntary surgical procedures, the effects of anesthesia can render a person temporarily incompetent. In a hospital environment with multiple staff changes throughout a 24-hour period, communication can feel brief or disconnected. An engaged and organized medical advocate will ensure information is shared among providers and the person receiving care kept at the center of all decisions.

For LGBTQ people who experience increased incidents of discrimination, harassment and service refusal, the ability to advocate for themselves is crucial. Health and aging facilities are bound by the Health Insurance Portability and Accountability Act ( HIPAA ), which protects client health information. The release of medical records or coordination of treatment to a person other than the client is a violation of HIPAA, unless they have been designated to do so.

A power of attorney ( POA ) for health care is the first step to ensuring your chosen decision-maker is respected and can act on your behalf. The form varies state to state, but for Illinois it can be accessed here: The language of the document is intentionally broad and there is space to include detailed instructions for life sustaining measures and end of life care.

At the crux of the relationship between a person and their POA is trust and capability, and that person may not always be a partner or spouse. The responsibility of making medical decisions for a loved one is complex. Take into account the following factors when choosing a POA:

—Medical, health or aging expertise: Professional experience will help them navigate systems successfully.

—Calm under pressure: Do they rise to the occasion under stress?

—Practical empathy: Can they act according to your wishes, not their own?

—Capacity: Do they have time to commit to your advocacy?

—Location: Do they live in the same city or area?

A POA for finance is also a critical long-term care planning tool for LGBTQ people. The POA for finance, if possible, should be a different person than the POA for health care. The distinction will minimize conflicts of interest and spread responsibility. Here is a link for the POA for finance form for Illinois:

You can complete both the POAs for finance and health care forms on your own, but must have one witness present. It is best practice to keep a copy on file with your attorney, one copy for yourself and a separate copy for each POA. In this electronic age, it is advantageous to store a digital copy which may be quickly accessed should the need arise.

Long-term care planning encompasses many areas, and the purpose of advanced directives is to safeguard individual well-being throughout life. Questions of care and decision-making often center around life-sustaining measures. These can range from installing a feeding tube when a person can no longer eat independently to the decision to go on hospice and pursue comfort measures versus traditional routes of treatment when the body is failing.

Additional advanced directives, such as a living will or a Five Wishes document ( ), helps more deeply explore and confirm your desired approach to life-sustaining measures. These documents can be a clarifying tool for your POA on to proceed in the future.

It is in your best interest to consult with an elder-care manager, a social worker, nurse or other experienced personnel to fully understand the aging process and the scope of available options.

Jacqueline Boyd is the founder of The Care Plan; a care management and mapping company catering to the health and aging needs of Chicago's LGBTQ communities. Find more information at, or call 630-479-0083 for assistance with long-term care and advanced directives.

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