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Eliminating Bias in Hospital Visitation: Room for Improvement

Last April President Obama issued a memorandum requesting that the Secretary of Health and Human Services issue new rules to ensure that hospitals that participate in Medicare and Medicaid respect the rights of patients to designate visitors and surrogate decision-makers. The case of Janice Langbehn, prevented from seeing her dying partner, Lisa Pond, in a Miami hospital, even though they had been partners for 18 years and Langbehn was Pond’s health care proxy, was just one of many instances of long-time partners being denied access in hospitals and emergency departments that led to the memo.

Kathleen Sibelius, Secretary of Health and Human Services, assigned the task of writing new rules to the Centers for Medicare and Medicaid Services (CMS), which published proposed rules in the Federal Register on June 28, with a comment period ending August 27. The proposed rules lack the eloquence of President Obama’s memo but follow his general direction. Still, nothing in health care or federal rule-making is simple.

The proposed rule is, in my view, a strong move in the right direction. However, as I read the regulatory language about “hospital visitation,” I pictured a patient sitting up in bed, cheerfully receiving visitors bearing flowers and balloons. “Visitation” does not convey the sense of full participation in decision-making that being a health care agent or being in an intimate relationship entails.  Whatever their other differences, all family caregivers have to overcome the hospital “visitor” designation as they struggle to obtain information, participate in care planning, be trained to meet the patient’s ongoing needs, or make end-of-life decisions.

The proposed rule also has a lot of language about the patient choosing whom to allow in the room and whom to bar. While this is an appropriate support for patient autonomy, it suggests a patient in full control mentally and physically. Most people have not designated health care proxies, much less a list of acceptable visitors.  Yet the cases where access is most critical and most often denied are those in which the patient is dying, comatose, in severe pain, or otherwise unable to express his or her wishes.

Patients need someone with them who has the capacity to make wise decisions, communicate with health care professionals, and be a loving presence.  It matters not whether one is a blood relative, married or unmarried, in a legally recognized relationship, or any other distinction. What counts is commitment and caring.

The rules propose changes in the patient’s rights section of the hospital Conditions of Participation (CoP) for Medicare and Medicaid, the basic agreement that sets standards for reimbursement. The current section includes a patient’s (or representative’s) right to appeal a discharge, have a doctor or family member notified of an admission, and participate in the development of a care plan. A patient is also assured privacy, care in a safe setting, freedom from all forms of harassment and abuse, and confidentiality of patient records. The section on patient’s rights does not mention visitation. The proposed rule would add the following:

Standard: Patient visitation rights. A hospital must have written policies and procedures regarding the visitation rights of patients, including those setting forth any clinically necessary or reasonable restriction or limitation . . . and the reasons for the restriction or limitation. A hospital must:

  • Inform each patient (or representative, where appropriate) of the right, subject to his or her consent, of his or her visitation rights.
  • Inform each patient  . . . of the right to receive the visitors whom he or she designates, including, but not limited to, a spouse, a domestic partner (including a same-sex domestic partner), another family member, or a friend, and his or her right to withdraw or deny such consent at any time.
  • Not restrict, limit, or otherwise deny visitation privileges on the basis of race, color, national origin, religion, sex, sexual orientation, gender identity, or disability.
  • Ensure that all visitors designated by the patient (or representative, where appropriate) enjoy visitation privileges that are no more restrictive than those that immediate family members would enjoy.

The comments and CMS response and final rule have not yet been published in the Federal Register. But some of the comments suggest some themes. The American Hospital Association supports the effort but does not see the need for major changes in the proposed rule or for that matter for the rule itself. Linda E. Fishman, senior vice president for public policy analysis and development, noted in the AHA comment that “nearly all hospitals have existing policies and procedures in place regarding visitation rights and this change to the CoPs may be unnecessary.”

She reiterated hospitals’ need to restrict visitation so that other patients’ care is not disrupted, and to deny visitation to individuals with fevers or other indicators of contagious disease. (The proposed rules acknowledge the need for restrictions based on patient safety and clinical care.) The AHA’s main concern, she wrote, is about the development of interpretive guidelines, instructions for national and state surveyors, and coordination with existing state laws regarding visitation rights.

Advocacy organizations representing gay, lesbian, bisexual, and transgender individuals generally welcome the proposed rule but outline several areas of concern. Their constituents are among those most directly affected by this rule and the most harmed by its absence. Michael Adams, executive director of SAGE (Services & Advocacy for Gay, Lesbian, Bisexual, and Transgender Elders), commented in collaboration with the National Coalition for LGBT Health and other organizations. The comment (personal communication) attributes the disparate treatment of LGBT patients and their families to, among other factors, “the way in which so many LGBT people create and sustain family which . . . is through bonds of affection and affinity rather than blood or legal status.”  They consider their close relationships as “immediate family.”

While subsection (4) appears to promote equal treatment, it subtly undermines that goal by perpetuating a distinction between types of family members – “immediate” and presumably “not immediate,” suggesting a lesser status. The comment also points out that hospital staff may arbitrarily dismiss legal documentation proving a couple’s relationship because it is issued by another state, or force them to “prove” their connection to a patient, while a heterosexual person identifying him- or herself as a spouse, sibling, or parent is not questioned.

Regardless of whether hospitals have official policies or not, staff sometimes play the “immediate family” card when they disapprove of the patient’s and visitor’s relationship. Some of the difficulties stem from the inconsistent way that states define and/or recognize (or don’t) same-sex marriages, domestic partnerships, and civil unions, not to mention health care proxies. As a result, the way a patient and partner are treated in a hospital may depend on a particular staff member’s personal views, not on hospital policy or state law and certainly not on well-defined federal standards.

The Committee on Lesbian, Gay, Bisexual, and Transgender Rights of the New York City Bar, point out that the proposed rules are limited in scope, as “they make no provision for the many patients who lack capacity to make a specific designation of visitors upon admission to a hospital.”  Not only will this limitation prevent many patients from exercising the expansion of visitation rights, it “will also give many individuals a false sense of security in the expectation of a fuller scope of rights.”

In a 26-page comment, Lambda Legal, the Gay & Lesbian Medical Association, and the National Health Law Program also stressed that requiring documentation of the patient-visitor relationship should rarely be required and should not be used in a discriminatory way to LGBT people. The comment also recommended that the visitation rules for hospice and nursing home facilities include nondiscriminatory language. Finally, there must be an appeals procedure for visitation denials and patients must be informed about it.

Although the LGBT connection is the most obvious, other individuals are also affected by the proposed rule. The Alternatives to Marriage Project, a national nonprofit organization that advocates equality and fairness for all categories of unmarried people, asserted in its comment that “CMS may not be aware that, just like same-sex couples, unmarried different-sex partners are frequently barred from visiting their loved ones in hospital settings. Some partners gain access by claiming to be siblings or spouses.”

The comments recommend that the language in the final rule be more inclusive. SAGE recommends adding “marital status, family composition, and primary language” to the list of categories protected against restriction or denial of hospital visitation. Alternatives to Marriage asserts that the rule should ensure visitation protection for “legally appointed health care agents, without discrimination on the basis of martial/relationship status, for emergency patients, and for patients who have not yet designated visitors and/or completed advance directives.”

If hospitals do indeed have policies that support nondiscrimination, as the American Hospital Association comment asserts, they are not doing a very good job of enforcing them. The training that accompanies the implementation of the final rule should incorporate an understanding of the intent of the regulation, not just its language. The proposed rule is clearly designed to prevent restrictions based on real or perceived status. Hospitals are part of the community and obligated to treat all its members fairly. That means recognizing the many ways that people form lasting bonds of affection and mutual support, which are so critical to a patient’s well-being.  In a crisis, patients need high-quality medical care but also the support and presence of, in Raphael Cohen-Almagor’s evocative phrase, their “beloved people.”

Carol Levine, a Hastings Center fellow, is director of the Families and Health Care Project of the United Health Care Fund.

Published on: October 4, 2010
Published in: Health Care Reform & Policy

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