New visitation rules from CMS secure equal rights for all patients

Hospitals will be required to develop policy accordingly

Last November, the Centers for Medicare & Medicaid Services (CMS) issued finalized new rules for Medicare- and Medicaid-participating hospitals designed to protect patients' right to choose their own visitors.

These rules, which update the Conditions of Participation for all Medicare- and Medicaid-participating hospitals, ensure that patients enjoy "full and equal" visitation privileges as requested by the patient or his or her surrogate or representative. The rules apply to all patients at such hospitals, regardless of the payer for their medical care.

The new rules follow from an April 15, 2010, Presidential Memorandum, in which President Obama tasked the U.S. Department of Health and Human Services with developing standards for such hospitals — including critical access hospitals — that would require them to respect the right of all patients to choose who may visit them when the are an inpatient of a hospital.

The President's Memorandum instructed HHS to develop rules that would prohibit hospitals from denying visitation privileges on the basis of race, color, national origin, religion, sex, sexual orientation, gender identity, or disability. It also directed that the rules take into account the need for a hospital to restrict visitation in medically appropriate circumstances, according to the HHS news release on the issue.

The new rules require hospitals to have written policies and procedures detailing patients' visitation rights, as well as the circumstances under which the hospitals may restrict patient access to visitors for medical reasons.

The rules impose new requirements on hospitals to explain to all patients their right to choose who may visit them during their inpatient stay, regardless of whether the visitor is a family member, a spouse, a domestic partner — including same-sex domestic partners — or other type of visitor. The rules also require that hospitals explain that patients can withdraw such consent to visitation by any such person at any time, the release states.

"These rules put non-clinical decisions about who can visit a patient out of the hands of those who deliver care and into the hands of those who receive it," said CMS Administrator Donald Berwick, MD, MPP. "While we still have miles to go in making care more patient-centered, these rules make it easier for hospitals to deliver on some of the fundamental tenets of patient-centered care — care that recognizes and respects the patient as an individual with unique needs, who [is] treated with dignity and granted the power of informed choice."

Rules follow a decades-long movement

According to Nancy Berlinger, PhD, MDiv, deputy director and research scholar at The Hastings Center in Garrison, NY, there's been a movement pushing for equal visitation rights for at least 30 years.

"When you think about it in terms of the AIDS epidemic, this came up very frequently in the 1980s when there was, at least in areas of high incidence . . . a question of who should be with the patient," Berlinger tells Medical Ethics Advisor. "You had a person who would be critically ill, often dying, and their partner would not be recognized and sometimes not even allowed in at all. So, there was no protection for what the patient would want and no way for that unmarried partner, same-sex partner, person in another relationship, or friend who's a caregiver to advocate for themselves as well as for the patient."

In many instances, the person whom the patient wanted as a visitor was the caregiver to that patient outside the hospital.

When The Hastings Center prepared its 1987 guidelines on end-of-life care, the center heard from people who were involved in that movement.

"When you talk about the importance of loved ones, for example, it was the acknowledgement that you couldn't just use a word like 'family' or 'spouse' to accommodate everyone who the patient might want to have there and who might have knowledge relevant to the patient's care," Berlinger notes.

The new rules go beyond the idea of patient-centered care, she says.

"It goes to the real issue of what do we mean by all patients being equal even though all patients are individual. Do they have an equal right to have who they want with them? Well, yes. So, how do we honor that right in practice? A policy like this is one of the ways of saying, 'The patient can decide this,'" she says. "Also, the patient can revoke it. The patient can say, 'I prefer not to have so-and-so' . . . it does not restrict the categories to legal or biological categories."

The National National Gay and Lesbian Task Force called the new CMS rules "a significant step forward in ensuring same-sex couples are no longer discriminated against in hospital settings." The new rule, according to a release issued by the Task Force, will cover nearly 6,200 hospitals with more than 35 million patient admissions each year.

"Of all the things same-sex couples have to worry about, of all the discrimination and pressures we face, not being able to see our partner or spouse shouldn't be one of them. [This] announcement honors our relationships, our love, and our basic humanity. An end to this discrimination can't come soon enough. We thank the administration for taking this critical stride forward and will continue to work with Health and Human Services as it issues future guidelines to ensure full and clear implementation of this rule," said Rea Carey, executive director of the Task Force.

According to a news release from the National Gay & Lesbian Chamber of Commerce, that organization signed a letter that as of September had the signatures of 54 organizations representing lesbian, gay, bisexual or transgendered (LGBT) organizations and advocacy groups lauding President Obama's "desire to grant visitation rights to LGBT couples."

"The NGLCC is proud to be among those groups submitting comment . . . so that same-sex and domestic partners can finally have equal rights to visit their sick loved ones," said NGLCC President and Co-Founder Justin Nelson.

Berlinger cites a case from several years ago in which two women who were domestic partners were vacationing, and one became very ill and had to be taken to a hospital. The partner of the sick woman was denied access.

"That's the kind of case that reminds us that this can still be with us on an institutional [level],"Berlinger says. "It shouldn't be something that you have to leave to chance depending on what state you get sick in or what hospital you go to, because you don't often have a lot of control over what hospital you're taken to in an emergency."

Hospital policies must be developed

Berlinger describes these issues "major equality issues" and a "civil rights issue."

"It isn't just a same-sex issue; it is also an issue of recognizing caregivers who are loved ones but are not relatives — who are not in a biological or legal relationship," she explains. "That's very important, because when a person is seriously ill, care is often provided by a network of family and friends, and there may also be . . . paid caregivers from home health."

Many hospitals already have what are considered "open" visitation policies. But for those hospitals that don't, they will have to develop new policies, which will have to be accompanied by a "big education process . . . hospitals employ lots of people, and they're never all in the same room at the same time," Berlinger says. "So, when you announce a new policy, it isn't just like you send out a memo one day. It's a way of saying, 'What were we doing before that is going to have to change now.'"

Certain restrictions on visitors are also built into the new CMS rules, but those are restrictions based on medical or clinical decisions.

It should not be an overwhelming challenge to hospitals to develop new policies, according to Berlinger.

"This is another way that we honor patient autonomy, but recognize that autonomy always takes place inside a social relationship," Berlinger notes. "That's one of the ways we make decisions about ourselves is who we want to spend our time with."