In the 1980s, AIDS struck.

I went to a hair salon here in Washington about every three weeks to get my hair cut. One April day in 1982 I went in only to see the chair next to the one I was in empty. “Where is ____?” I asked my stylist. “He is such a nice man.” (The first few cases were reported in 1981.)

He leaned over and whispered, “He died. We aren’t supposed to talk about it.”

What? Three weeks ago he was there, laughing with his clients as he cut and combed.

“His parents were flown in from Sweden. He was at NIH. They don’t know what happened. He got very sick and was dead.”

That was my first news of what became the AIDS epidemic.

One young man, not in harm’s way, dead in under 21 days.

Dying young men had a mysterious disease doctors thought they may have a name for. AIDS was not brand-new. What was happening was.  All physicians could do was try to assess the symptoms—they varied widely—and treat those. Meanwhile, scientists at NIH were frantically working to search for more information about causes and search for treatments.

A couple of years later, I worked at a hospital, one  admitting AIDS patients to its infectious disease service—and one of only two in the area which would.

By this time, AIDS was known as a disease gay men had. The stigma of being homosexual. The terror of AIDS, a disease so vicious it shocked even doctors who had seen the worst infectious diseases known. No hope for cure.

The chairman of internal medicine said to me, “I hate it that we have to go in their rooms looking like aliens with masks, gloves…the works. Their parents won’t come. They die horribly and they die alone.”

I asked him if it would be acceptable for me to go with him into one room for only two or three minutes. I had to see the patients they were treating. He said yes and helped me put on all of the protective gear.  He said that we could step just inside the door but go no further. He could not let me take any chances. I was not even a clinician. I had to promise not to tell anyone he let me do this.

“This young man is only hours away from dying. He is unconscious. We will not be invading his privacy. You will get to see how their lives end. I hope you are ready for this,” he said.

What I saw, of course, is as clear today as it was that day. No one could have been ready for it.

Mainly, though, I saw was the loneliness this patient must have felt. The chief of this service was right. The only people he had were those protected from him as they tried to protect him. No hand held. No words of comfort, other than from nurses he never had met. This was wrong and, yet, they were doing everything they could. These were brave men and women, the first ones who tackled taking care of patients who, for all they knew, could transmit this disease to them if they slipped up on protective gear and practices even once. Time has proven that to be true. One stab from a sharp used to test or treat an AIDS patient is a dangerous event for a clinician, for example.

I never have been any more proud of a hospital I worked for than I was of that one on that day.

That scene, and others like it, led gay men to start demanding the right to stay with dying partners in hospitals. So few gay men had family members who would acknowledge them, much less forgive them. The cause of death was not given in obituaries. Loss heaped on more loss.

Now that there are treatments to delay the onset of the disease, as well as treatments—though not cures—for the active disease, AIDS patients may be in and out of hospitals over a period of years.

Who can visit? Who can make important decisions? The partner to whom this ill person is attached had no rights whatsoever, even in the absence of blood relatives.

Following the gay men’s advocacy were lesbians, women who were in partnerships who had no legal standing either. Although they did not suffer from AIDS they had other specific health concerns which were not being addressed. They added their voices to the demand for partnership rights in hospitals.

Folllowing gays and lesbians are all of the couples who, while committed to one another, are not married. They, too, have been denied the rights their partner wants them to have. Two social trends are at work here. On the young end of the age spectrum, couples are delaying marriage. On the other end, widows and widowers who are in a committed relationship, but who for personal reasons do no wish to remarry, also have been denied the right to act for one another.

In the 1990s, I met an 83-year-old woman at a hospital dinner, a widow. She was charming, smart and interested in everyone around her. As we talked on, we discovered mutual connections. Then she said, “If I tell you a secret, will you keep it?’

Of course.

“I’m living with a man I love very much. My children are being wonderful about it. I don’t say anything about this to them.” The “them” here were people in the community who, I was all but sure, knew all there was to know about it. Adult children talk to their friends about Mama, who then…However, she was blissfully ignorant if that was going on. Ladies did not make these things known then, not ladies of her generation. Today, even proper elderly ladies like her feel free to acknowledge their relationships.

“I don’t think we were meant to live alone,” she said, her blue eyes sparkling in the candlelight. She was one of the first to be part of that trend—longer life spans make these relationships much more common and accepted.

Yesterday the world changed for all of them.

Yesterday, the world caught up with all of them and what they all should have had the right to do for a long time. Take care of those they love. No one in a hospital should be deprived of the support of the person he or she wants to be there.

This is a change that is humane and compassionate.

Just shy of three decades later, all patients have the right to the aid and comfort of their partners. Gays. Lesbians. Widows and widowers. Obviously, younger, unmarried couples will benefit as well.

Hospital now can be kinder to the sick and those who love them today, regardless of the structure of the relationship.

I do not believe showing compassion can ever be wrong.

Physician’s First Watch

“Rules to “ensure that hospitals that participate in Medicare or Medicaid respect the rights of patients to designate visitors,” will be promulgated by the Department of Health and Human Services, the White House announced overnight.

“President Barack Obama, in a memo to HHS Secretary Kathleen Sebelius, asks that such visitation privileges be “no more restrictive than those that immediate family members enjoy.” The directives also seek guarantees “that all patients’ advance directives, such as durable powers of attorney and health care proxies, are respected.” (Emphasis added)

“In his memorandum, the President says the new rules seek to address the “indignity and unfairness” of current practices in which “people are made to suffer or even to pass away alone, denied the comfort of companionship in their final moments while a loved one is left worrying and pacing down the hall.” (Emphasis added)

“The Washington Post calls the decision “perhaps the most significant step so far in [the President's] efforts to expand the rights of gay Americans.” The Post story says: “The new rules will not apply only to gays. They also will affect widows and widowers who have been unable to receive visits from a friend or companion. And they would allow members of some religious orders to designate someone other than a family member to make medical decisions.” (Emphasis added)

Source: Physician’s First Watch, April 16, 2010

Source: Washington Post, April 16, 2010