[Bella’s intro: For many years, I have been writing about the research on single people and their social ties. Contrary to the stereotype of single people as isolated and alone, studies show that on the average, single people have more friends than married people, and do more to maintain their ties with neighbors, friends, siblings, and parents. That means that single people who fit this profile should have plenty of support when they need it, even if they have no children. However, as Professor Joan DelFattore points out in this smart, engaging, and carefully-researched essay, friends and relatives who are not nuclear family members are not always accorded their appropriate status or rights – even when their place is already ensconced in the relevant laws. This is an important article, and I am very grateful to Joan DelFattore for allowing me to share it with you here.]

In a Hospital, Friends Are Not People

Guest Post by Joan DelFattore

I recently had a front-row seat for Wit, a Pulitzer-Prize-winning play about a woman who’s intelligent, well-educated, articulate, financially secure, and professionally successful.  But she’s not married, and nothing else matters as a cancer diagnosis turns her into a poster girl for society’s prejudices about being sick while single.  There she lies, pathetic and abandoned, in her sterile hospital bed.  Not a phone call from anyone she knows.  Not a card.  Not a flower.  Her only visitor is an old teacher who, we’re led to believe, is actually dead and exists only in the patient’s drug-addled imagination.

Choose your medium — television, film, advertising — and the message is the same.  If you prefer your visitors live, you’d better couple up.

Of course, serious illness can mean loneliness and disconnection for some singles, especially if they’re poor, isolated, mentally ill, or emotionally fragile.  But theirs isn’t the only story of what it means to be sick while single.  It’s just the one we keep hearing about — and believing — until it becomes a self-fulfilling prophecy.  A single woman in a hospital may be alone, not because she doesn’t have a strong support system, but because the people who love her don’t fit the categories sacrosanct to family-obsessed hospital staff.

In Single with Attitude, Bella DePaulo writes about an episode of the television show Private Practice where a character dies in a friend’s arms, with another standing beside the bed.  How sad, his doctors lament, that he died alone.  “The usual perversion of the word ‘alone’ is in play,’ DePaulo remarks.  “If you have two old friends with you, one actually in bed with you and holding you in his arms, you have died alone.  By this taken-for-granted definition, friends are not people.  Unless there is a spouse present, you have died alone.”

When I read that, my first thought was, That dying man was lucky.  In some hospitals, he really would have been alone, because the nurses would have chased off anyone but immediate family. 

I speak from experience.  I’m a lifelong single-by-choice, without children.  My parents are deceased, and since I have no siblings, and thus no nieces or nephews, my closest living relatives are cousins.  By the standards reflected in Wit and Private Practice, I’m fundamentally alone.  I can’t weasel out of it just by having friends; the only way not to be alone would be to go out and get myself a partner.  That’s how it works on stage and television, in movies and fiction and advertising — and in the real world.  It’s a self-perpetuating loop, as the culture and the media feed each other the same unthinking prejudices.

The story I’m about to tell you, about being isolated in a hospital whose staff wouldn’t recognize non-family companions, is by no means unusual.  In All the Single Ladies, for instance, Rebecca Traister writes about a single woman who went to an emergency room after falling on a dance floor.  Although she wanted to have a friend with her when she saw the doctor, she had to go in alone because only immediate family were allowed.  And in Singlism, DePaulo writes about a friend of hers, a single woman, who was taken to an emergency room after a car accident.  She wanted to call a friend for a ride home, but the staff insisted that only immediate family could pick up patients.

Now let me tell you what happened when, accompanied by two cousins and a close friend, I checked into a world-renowned Manhattan hospital for a six-hour operation.

“Could you tell us how Joan DelFattore is doing?” Barbara asked the desk clerk in the surgical waiting room.

“Are you her sister?”

“No, I’m her cousin.”

“Then I can’t tell you anything.”  She made a zipping motion across her lips.

“My husband and I are her next of kin!  We have her health-care proxy!”

Zip.

A couple of days earlier, I’d visited the hospital’s admissions department to fill out a pile of paperwork, mostly about insurance and payment.  But it was only minutes before surgery when a nurse handed me a form asking who was to be given updates about my condition.  Chuck, Barbara, and Liane, I wrote.  Cousin, cousin, friend.  The nurse shook her head.

“It has to be immediate family.”

“Don’t have any.”

“I dunno,” she said doubtfully.

Either the form wasn’t passed along, or the staffer in the surgical waiting room ignored it, leaving the people in my life to endure six nailbiting hours.  Was I in surgery or out of surgery?  Alive or dead?  Nothing but Zip until the surgeon arrived to say that I’d survived the operation.

When Barbara told me what had happened, my first thought was that perhaps HIPAA was to blame.  That’s the Health Insurance Portability and Accountability Act, a federal law regulating the release of patient information.  But according to the HIPAA guidelines issued by the U.S. Department of Health and Human Services, patients have the right to direct health-care providers “to discuss the patient’s health information with a family member, friend, or other person” (emphasis mine).  The favoritism toward immediate family that turned my instructions into waste paper isn’t required by federal law.  It’s just so deeply entrenched in our culture that it might as well be.

The title of a 2015 New York Times story says it all:  “HIPAA’s Use as Code of Silence Often Misinterprets the Law.”  Clinton Mikel, chairman of an American Bar Association group on e-health and privacy, told a reporter that once a patient has authorized the release of information, “providers must comply.”  Presumably, hospitals have lawyers who know that, but they’re not on duty in the surgical waiting room.  As long as the front-line staff believe that they must, or at least may, limit access to immediate family, that’s going to happen no matter what the law says.

It was the campaign for same-sex marriage that first drew attention to the injustice of allowing hospital staff, rather than patients, to choose who should get information, or make decisions, or visit.  In Beyond (Straight and Gay) Marriage, Nancy Polikoff tells the story of Robert, an AIDS patient who appointed his partner, Bill, his health-care proxy.  Under no circumstances, Robert stipulated, was Bill to permit the use of a respirator.  But when he was hospitalized in critical condition, the staff would neither listen to Bill nor allow him to see Robert, because he wasn’t immediate family.  By the time Robert’s relatives arrived, he’d lapsed into a coma, the dreaded tube jutting from his throat.

Although the legalization of same-sex marriage provided relief for gay spouses, the underlying discrimination can’t be rectified, as DePaulo puts it, “simply by expanding membership in the Married Couples Club.”  I shouldn’t have to marry somebody, for heaven’s sake, just so the people in my life can find out if I’m still in surgery, or come in with me to see the doctor, or play any role that they and I agree on.

No matter what hospital policy says — or even what the law requires — it’s all too easy for front-line staff to turn their social prejudices into a patient’s reality.  That problem can’t be remedied merely by amending the hospital’s written rules, or adding an item to its script for staff training.  What has to change is the system.

At my local community hospital, filling out a release-of-information form is part of the admission process.  The names listed by the patient are entered into a computer, and hospital employees are required to look up those names when anyone inquires about the patient.  If there’s a match, they give the information.  If not, they don’t.  They’re not invited to make a judgment call about whether the inquirer fits some pre-determined social category.

Without such protection, the stereotype of the lonely single woman abandoned in her hospital bed is all too likely to come true, frustrating both the patient and her excluded loved ones.  It’s not enough for hospitals to have written policies that comply with the law, if the laxity of their procedures allows family-obsessed employees to isolate us from support systems that would otherwise work very well.

In a country so dedicated to family values — or at least to the idea of family values — it might seem positively un-American to point out its dark side of prejudice and discrimination.  But in the authoritarian setting of hospitals, where individuals are sick, in pain, and partially or entirely helpless, the singlist discrimination of some health-care workers — which the institution doesn’t bother to curb — is a form of majoritarian bullying that we’ve been putting up with for far too long.

About the Author: Joan DelFattore is a professor emerita of English and legal studies at the University of Delaware.  Her publications include three books with Yale University Press as well as dozens of articles, mostly about freedom of speech and religion.  Her current project is a memoir about being a lifelong single-by-choice, including dealing with singlism in medical care.

[From Bella: Thank you again, Dr. DelFattore, for your insights and for sharing them with us.]