Experiences of Healthcare Discrimination

Emergency Room Experience

James E. Massey and I met on January 28, 2000. On June 28, 2003, we were united in a covenant ceremony, at National City Christian Church’s Howland Center, in Washington, D.C. We subsequently registered as domestic partners in the State of California. On November 19, 2004, we finalized the adoption of our son.

On June 15, 2006, I received a call from one of James’ co-workers, who said that James had collapsed at a CVS drug store near their Southwest D.C. office and had been taken by ambulance to the hospital. I then called 911 and was told that based on the location of the drug store, it was likely that James had been taken to Howard University Hospital. I then called a family friend and ask her to pick up our son from pre-school, while I went to Howard.

When I arrived at the emergency room at Howard, I asked the nurse at the desk whether James Massey had been brought to the hospital by ambulance. The nurse asked who I was and I explained: “My name is Ken Johnson and I am James Massey’s domestic partner.” The nurse replied that she could only release information to Mr. Massey’s immediate family. I replied that Mr. Massey and I had been partners for over six years; that we lived together; that we had registered as domestic partners in the State of California; that we had executed wills and powers of attorney on each other’s behalf; and that we had adopted a son together. The nurse’s response to me was: “You’re just the friend; I can only release information to immediate family members.”

I waited for the nurse to leave the station and I walked into the emergency room and began looking behind each curtain to see if I could find James. (At the time, I did not care about invading other patients’ privacy. I needed to find my partner and my son’s father.).

When I found James, a doctor and a nurse were working on him. James was lying unconscious in a hospital bed. He was bleeding from his nose and mouth. The doctor asked who I was and I said that I was James’ partner. The doctor explained that James had suffered a cerebral hemorrhage; that his condition was critical; and that they were going to move him to the intensive care unit. The doctor said that I could ride on the elevator with them and James to the ICU, but then I would have to leave.

When we arrived at the ICU, I told James that I loved him. I then left James’ room, according to the doctor’s instruction.

At our covenant ceremony, I took James to be my life partner, “for better for worse, for richer for poorer, in sickness and in health, to love and to cherish, until we are parted by death.” At the ceremony, I promised James: “I’m not leaving, no matter what.”

I did not want to leave James’ hospital room because I did not want him to die alone. But I knew that if I wanted to see him again and be involved in making decisions about his health care, that I would have to drive to our home in Fairfax County, Virginia, so that I could get our wills, living wills and powers of attorney.

After a few minutes, my friend arrived at the hospital and I asked her to drive me home. Due to traffic, it took us about two and a half hours to drive to my home; get the wills, living wills and powers of attorney; and drive back to the hospital. While we were gone, decisions were made about James’ health care that did not consider his wishes, as reflected in the living will that he had signed. When I returned to the hospital with our wills, living wills and powers of attorney, I was allowed to be involved in making decisions about James’ health care and to spend the night in James’ room. The next day, June 16, 2006, James died.

Kenneth D. Johnson
May 13, 2008


Being By His Side

by Rob
Earlier this year, Bill and I went to New Orleans for an annual weeklong get-together with friends from college. We all went to a restaurant for lunch. Bill is highly allergic to shellfish and it was made very clear to the waitress he could not have any food prepared with shellfish. Unfortunately, he had a severe reaction to a pasta dish with sauce we later found out contained crawfish. The restaurant was not prepared to react, so we rushed to a drug store to purchase some Benadryl.

When Bill started to get worse, we then rushed to the hospital, but when we arrived at the emergency room, we couldn’t figure out how to check in. At this point, Bill was having difficulty breathing. At the intake counter, I explained the situation to one of the employees and she told us to wait in the lobby, where a couple dozen of folks were already waiting. I, of course, was not happy with this. Bill's hands were shaking and I reiterated the urgency of the situation with the intake person. She motioned the nurse on duty who took us in to ask questions.

Luckily, the nurse, Bret, was a gay male who immediately calmed us down and began the preliminary evaluation. Bill took off his shirt and was covered from head to toe with large red hives. Bret told me that New Orleans is very gay friendly and that I could take care of the paperwork and sign on his behalf, while Bill was rushed into the ER for treatment.

It was obvious that the intake representative was uncomfortable with our relationship, but I was as smooth and professional as I could be in order to make sure all was in order. When I finished, Bret came back to take me into the ER where Bill was hooked up to two IVs. During the two hours we were there, Bret came back to check on us and tell us where to go during our visit. I was so impressed with his help and professionalism that I wrote to the hospital, complimenting his efforts.

The idea of not being able to act on Bill's behalf and be there by his side – during the worst scenario we have ever encountered and in a city with which we were unfamiliar – would have been devastating. Chances are I would have had to be arrested if I was not allowed to stay with him and be there for him.

Having the "rights" to act on his medical needs and be there for him during such an emergency should be rights afforded to anyone in a similar situation.

As a lesson learned, we have been trying to educate ourselves on preparing the necessary powers of attorney, wills, medical directives, etc., but find there are not many attorneys in our area who have the experience or desire to help two gay men prepare such documents. Either way, we will be better prepared next time we travel.

 Jan. 8, 2003


The Person I Count On

by Michael F. and Gregg B.
We had our first date 12 years ago. In September 1993, we had a commitment ceremony that was attended by 100 of our friends and family (my partner’s family), including our priest, who came without his collar and blessed our union. Since then, we have found out that he is gay.

Three years ago, I fell 25 feet off of a roof and needed surgery. I was in and out of consciousness, and the one person who I wanted to make decisions for me would not have been allowed to had I not been conscious. Fortunately, I was able to make my own decisions. With the domestic partnerships now in California, this is no longer a concern as long as you are registered. But if we travel, it could be a problem, for other states aren’t so quick to recognize basic rights for same-sex couples.

We are very happy together. In fact, we're best friends. The biggest challenge we face is that society still doesn't recognize our family in most circumstances. If we could be married legally, it would be so much easier.

Jan. 9, 2003


The Need for Legal Planning

By Lori Mason-Moore of Holden Beach, N.C.
Approximately nine years ago, I was involved in a bad automobile accident. I ended up being brought to the local hospital by ambulance. I broke my pelvis and had internal bleeding and many bruises and lacerations. I ended up staying five days in the hospital.

When I was first admitted, the woman in the X-ray department was very kind to us and allowed my partner, Brenda, to come in the back with me. However, once they put me in my room, they wouldn’t allow Brenda in or tell her my condition because she wasn’t “family.”

Brenda immediately sought out the head nurse on duty and insisted that she ask me if she could come in the room. The nurse apologized to us, but said that it was hospital policy that if someone isn’t legally your spouse or relative, then no information could be given to them.

I told the nurse that Brenda was in fact my spouse — and she will be allowed in my room at anytime and she will be informed of my condition whenever she asks for it. The nurse noted it in my file and suggested that we have a healthcare power of attorney written up to avoid this problem in the future. We did that immediately following my release from the hospital.

Feb. 12, 2007

Next of Kin

By Karen Waters of Seattle

My immediate family consists of my husband, Colin, and our 1-year-old son, Tate.
My mother, Brenda Meehan, died last August from a terminal disease known as Multiple System Atrophy. She was 64. She founded the Russian Studies program at the University of Rochester and served as its director for 20 years.

In addition to teaching history courses, she served as a senior associate dean in the College of Arts & Science, was instrumental in the creation of the women’s studies program and later was a founding member of what is now the Susan B. Anthony Institute for Gender and Women’s Studies.

At my mom’s deathbed was her partner, her sister, my sister and me. Minutes after Mom died, the doctor on call came into the room and asked who next of kin was. Melanie, my mother’s partner, responded saying she was her partner and healthcare proxy, then added that she also had power of attorney.

The doctor tersely responded that now that Mom was dead that was irrelevant and none of that mattered anymore. He then repeated his request to speak to the next of kin and continued to conduct his line of questioning in a heartless manner.

It was clear that if it wasn’t for our relationship with Melanie, Melanie would have had no say in important medical questions, such as whether we wanted an autopsy, regarding her partner who had died minutes earlier.

For the record, I would like it to be known that my mother’s primary care providers were all wonderful and conducted their work with care and grace.

Feb. 28, 2007


Simple, Basic Rights

By Miriam, Vancouver, Wash.

Shelley and I have been together for more than four years. We were "legally" married in the state of Oregon for a short period of time in 2004. But because our marriage is no longer considered a legal binding contract, we are not afforded the same rights afforded all married heterosexual couples. [Editor's note: For six weeks in Spring 2004, officials in Multnomah County, Ore., issued marriage licenses to same-sex couples. The Oregon Supreme Court invalidated these licenses in 2005.]

In the past year, Shelley and I have both undergone major surgical procedures, but because we are not allowed to utilize the Family and Medical Leave Act, we have both struggled with obtaining time off from work to care for each other.

When Shelley underwent surgery, I asked my boss if I could take the day off to drive her to the hospital and wait while she had surgery. His response was, "Doesn't she have friends or a neighbor who can take her?" I had to argue the fact that she was my partner and I considered her my family, and therefore expected the same rights that were afforded the other married couples in the office. He reluctantly allowed me the time off, mainly because he didn't feel like a lawsuit.

If same-sex couples were afforded the same rights that heterosexual couples take for granted, we wouldn't have to worry about taking time off from work to care for a loved one! We are asking for simple, basic rights that are afforded to all citizens of the United States.

I can't wait for the day when equal rights will be had by all Americans.

Sept. 5, 2006


Committed, In Sickness and in Health

By Cheryl Snider Garrison
When my partner, Tracey, and I decided on Valentine’s Day to formally recognize our commitment to each other this fall, little did we know what lay ahead of us. Just three weeks before completing my work as a second-career student in the Wake Forest University Divinity School, I was diagnosed with breast cancer. After countless procedures, exams and radiologist evaluations, I underwent a partial mastectomy during the last week of classes.

While my health care providers and family were very understanding and accepting of Tracey's voice in my health care decisions and her presence by my side at every procedure, we often found ourselves holding our breaths. We walked into each medical facility armed with my health care power of attorney and durable power of attorney. Our glove compartments contain those documents, as well as one assigning Tracey the right to make medical decisions for my children on my behalf. The reality that my will can be overridden by the slightest whim of a distant relative or my children’s father stays in the back of our minds. We remain vigilant at a time when our energies are best spent on healing.

Health care decision-making is the tip of the iceberg. After examining the fine print on my student health insurance policy, I was able to extend my coverage temporarily. Tracey has health insurance, but it is not offered to domestic partners. Nor, as second-career students, could we afford the stiff tax penalty that goes with so-called benefits. So what would have cost about $150 per month to those who are eligible for family coverage will cost me $2,800 per month when my current coverage expires.

Despite the obstacles that the structures of society have created, Tracey and I remain committed to one another, in terms of traditional marriage, “For better or worse, for richer or poorer, in sickness and in health.” We’ve seen all of those already in ways some heterosexual couples cannot even begin to grasp, and we look forward to sharing our commitment to each other with our incredibly committed Quaker community at a special meeting for worship on Sunday, Oct. 10, 2004.

Love does truly make a family.

Sept. 9, 2004