Health Beat: An Ounce of Prevention – Protections for Married and Unmarried Couples

NOTE: This is a long one, but very important.

Many of us remember the stories, and some of us lived them. In the 1980s and ’90s, men sat in hospital waiting rooms while their partners of twenty years died down the hall, because a nurse said “family only.” Women watched a partner’s parents, who hadn’t spoken to their daughter in a decade, fly in, take over, and shut them out of the room. Homes were lost. Funerals were planned by strangers. Partners were left off obituaries.

A lot has changed since then. Same-sex marriage has been legal nationwide since 2015, and the federal Respect for Marriage Act in 2022 added another layer of protection. Hospitals can’t legally bar the people we love from our bedsides. But the paperwork still matters, and for many of us it matters more than it does for anyone else.

Here’s why, and what to do about it.

If you’re married

If you’re legally married, you’re your spouse’s next of kin. In every state, a spouse is first in line to make medical decisions when a patient can’t speak for themselves. That’s a huge change from the world many of us came out into.

Still, don’t stop there. A few reasons:

Not everyone gets the memo. A staff member may hesitate, especially in an emergency, in a small-town hospital, or when you’re traveling. Having a health care proxy on your phone ends that conversation fast.
Family can still make trouble. If your spouse’s relatives never accepted your marriage, a clear proxy and living will make it much harder for them to challenge your decisions or your spouse’s wishes.
Peace of mind. Many of us carry a quiet worry about how secure our rights really are. Putting everything in writing means you aren’t relying on any single law to protect you.

If you’re partners who never married

Plenty of us chose not to marry. Some had been together so long it felt beside the point. Some had financial reasons, like pensions or benefits. Some simply didn’t want the government in their business after decades of it saying no.

That choice is yours. But know this: without paperwork, an unmarried partner has no automatic legal right to make medical decisions for you. When a patient can’t speak, most states turn to a default list: spouse, then adult children, then parents, then siblings. A few states include “close friend” at the very bottom, and some don’t include partners or friends at all.

That means the brother who skipped your commitment ceremony, or the parents who told you never to come home, could be the ones deciding whether you’re kept on a ventilator. Your partner of thirty years could be standing in the hallway with no say at all.

For unmarried couples, a health care proxy isn’t optional. It’s the single most important document you can sign.

If your chosen family is your family

Many LGBTQ seniors are single, widowed, or estranged from their families of origin. We built circles of friends, ex-partners, and people who showed up when it counted. They’re the ones who drive us to appointments and know which pill goes with breakfast.

The same rule applies. If you want them to have a voice, you have to give it to them in writing.

The rights you already have

Visiting is the easy part. Since 2011, federal rules have required hospitals that take Medicare or Medicaid, which is nearly all of them, to let patients choose their own visitors. That includes partners and friends, married or not, and the rule specifically bars discrimination based on sexual orientation or gender identity. If you hear “family only,” politely say that the patient has the right to designate you, and ask for the patient advocate.

Information is less certain. The federal privacy law known as HIPAA does allow doctors and nurses to talk with loved ones involved in a patient’s care, as long as the patient doesn’t object. But “allows” isn’t “requires,” and a cautious staff member may say nothing. Paperwork fixes that.

The documents that change everything

A health care proxy. Some states call it a health care power of attorney. This names the person who makes medical decisions for you if you can’t make them yourself. It’s the big one, for married and unmarried couples alike.
A HIPAA authorization. A simple form giving doctors written permission to share your medical information with the people you name.
A living will or advance directive. Your wishes in writing: what treatment you want and don’t want, especially near the end of life. It protects your partner from having to guess, and from being second-guessed by relatives.
A designation for after. Many states let you name who has the right to make funeral and burial decisions. Without it, that right often goes to blood relatives ahead of an unmarried partner. If you’ve ever heard the story of a partner left out of the funeral, this is the document that prevents it.

In most states you can fill these out without a lawyer. You’ll usually need witnesses, a notary, or both. CaringInfo, run by the National Alliance for Care at Home, offers free advance directive forms for every state. If your family is likely to fight you, or there’s property involved, an hour with an LGBTQ-friendly elder law attorney is money well spent. SAGE, the national organization for LGBTQ elders, can help you find one.

For transgender and nonbinary readers

Your documents can say how you want to be treated, not just medically but personally: your name, your pronouns, and the people you want with you. A living will can also make clear that gender-affirming care, like hormone therapy, should continue. Make sure the name on your proxy matches your ID, or include both names, so there’s no confusion at the hospital.

Make the paperwork findable

A health care proxy in a drawer at home does no good at 2 a.m. in an ER forty miles away.

Give copies to your partner or proxy, your doctor, and your local hospital, and ask that they go in your chart.
Keep photos of each document on your phone, and have your partner do the same.
Carry a wallet card with your proxy’s name and number.
Look into “proxy access” on your health system’s patient portal. Many let your partner see your records and message your doctors with their own login.
If you travel, bring copies. Not every hospital you might land in will be in a friendly town.

When you’re the one at the bedside

Bring the paperwork, or have it on your phone.
Introduce yourself to the charge nurse and say plainly who you are: “I’m his husband.” “I’m her partner and her health care proxy.” Don’t apologize for it.
Ask for the patient advocate or social worker. They know the rules better than the front desk does.
Keep a notebook with names, times, and what you were told. Shifts change, and you’ll want the record.

If resistance feels like it’s about who you are rather than what the rules say, ask for the hospital’s nondiscrimination policy. Then file a complaint, with the hospital first, and with your state health department or the federal Office for Civil Rights if needed.

Do it this month

We fought for a long time for the right to sit beside the people we love. Many of us lost that fight before we won it. Don’t leave it to chance now.

Sit down with your partner, or your closest friend, this week. Fill out the forms. Find two witnesses. Then go out to dinner. You’ve earned it.

Health Beat offers general information, not legal or medical advice. Laws vary by state, so check the rules where you live or consult an attorney about your own situation.