On April 15, President Obama issued a memorandum to the Secretary of Health and Human Services, Kathleen Sibelius, directing her to issue new rules to ensure that hospitals that participate in Medicare or Medicaid respect the rights of patients to designate visitors and surrogate decision-makers. “Hospitals should treat all visitors, including people who are not immediate family, on the same basis,” the memorandum asserted. They may not deny visitation and decision-making privileges on the basis of race, color, national origin, sex, sexual orientation, gender identity, or disability.
Regulatory language aside, the president’s memorandum is eloquent and personal, perhaps drawing from his own experience of the deaths of his mother and grandmother. “There are few moments in our lives that call for greater compassion and caring than when a loved one is admitted to the hospital,” President Obama wrote. “In these hours of need and moments of pain and anxiety, all of us would hope to have a hand to hold, a shoulder on which to lean – a loved one to be there for us, as we would be there for them.”
The memorandum cast a wide net of potentially vulnerable people: “Often, a widow or widower with no children is denied the support and comfort of a good friend. Members of religious orders are sometimes unable to choose someone other than an immediate family member to visit them and make medical decisions on their behalf.” The memorandum noted that members of the lesbian, gay, bisexual, and transgendered community have been “uniquely affected” by exclusionary practices.
Among the recent high-profile cases propelling the legal intervention was that of Janice Langbehn and Lisa Pond. Lesbian partners for 18 years, they lived in Washington State with their four adopted special-needs children. Ms. Pond suffered a brain aneurysm in February 2007 while the family was preparing to embark on a cruise from Miami. She was hospitalized at the Ryder Trauma Center at Jackson Memorial Hospital.
Over the course of eight hours, an admitting clerk denied permission to Ms. Langbehn and their children to visit Ms. Pond and refused to relay any information about her, even though Ms. Langbehn was her partner’s health care proxy. The clerk did not tell Ms. Langbehn when Ms. Pond was transferred from the emergency department to the neurosurgery intensive care unit. A social worker told Ms. Langbehn not to expect any information or direct access because they were in an “anti-gay city and state.” Ms. Pond’s sister and brother-in-law, however, who lived in Florida and whom Ms. Langbehn had called, were allowed to visit.
Hospital doctors did talk to Ms. Langbehn and to Ms. Pond’s parents by phone about treatment options, and they agreed to placement of a brain monitor. Ms. Langbehn was finally allowed to see Ms. Pond while a priest administered last rites, but was immediately ushered out. The visit lasted five minutes.
Judge Adalberto Jordan, a U.S. District Court Judge, accepted the facts of the case as presented by Ms. Langbehn’s attorneys but granted the hospital’s motion to dismiss the case. He said that there were no legal grounds for Ms. Langbehn’s claims for emotional damage and negligence since the hospital did not have a fiduciary duty to allow visitation. He did, however, chastise the defendants, whose “lack of sensitivity and attention to Ms. Langbehn, Ms. Pond, and their children caused them needless distress during a time of vulnerability.” The defendants’ actions exhibited a “lack of compassion and was unbecoming of a renowned trauma center like Ryder. Unfortunately, no relief is available for these failures…” On April 12, 2010, the Jackson Health System and Lambda Legal Defense and its coalition partners announced that Jackson had agreed to update its policies recognizing same-sex partners as family members.
Secretary Sibelius has 180 days to respond to the President’s memorandum. She has several precedents to review. The memorandum noted that North Carolina had recently added a nondiscrimination clause to its patients’ rights regulations and that Delaware, Nebraska, and Minnesota already have such rules. New York State also has a regulation on “Hospital Visitation by Domestic Partner” (Public Health Law 2805-q), which will be incorporated into the broader, recently enacted New York State Family Health Care Decisions Act. This law states that spouses and domestic partners are first in line (after legally appointed guardians) to make health care decisions for an incapacitated person in the absence of a health care proxy. Ironically, the inclusion of domestic partners was one factor that delayed passage of the bill for 17 years.
The Joint Commission, the major private health care accreditation organization, has recently adopted new standards that support implementation of the memorandum. Standard R.01.01.01 states, “The hospital respects, protects, and promotes patient rights.” A new Element of Performance (Y) explains, “The hospital allows a family member, friend, or other individual to be present with the family for emotional support during the course of stay.” A note adds that this permission is granted, “unless the individual presence infringes on others’ rights, safety, or is medically or therapeutically contraindicated.” Another new Element of Performance (Z) states: “The hospital prohibits discrimination based on age, race, ethnicity, religion, culture, language, physical or mental disability, socioeconomic status, sex, sexual orientation, and gender identity or expression.” Hospitals will have to start reporting on their implementation of these standards now, but the results will not be considered in the accreditation decision until 2012.
These changes are groundbreaking, but anyone who might be vulnerable to being excluded as a hospital visitor or substitute decision-maker should be prepared to be a forceful advocate. Culture change takes a long time. Based on my experience both as a family caregiver for 17 years and as a professional focused on advancing public and professional understanding of the critical role played by family caregivers, I see two continuing areas of concern:
- The regulations required by the president’s memorandum must address the implementation of the Health Information Portability and Accountability Act (HIPAA). These rules have been used to deny relevant information to everyone regardless of race, color, ethnicity, sex, hair color, whatever. The Office of Civil Rights of the Department of Health and Human Services has made it clear that information can be shared with individuals who provide or pay for care, unless the patient objects. The new rules should be more specific in prohibiting discrimination and provide remedies for failure to communicate with family or friends who need the information to provide adequate care.
- The memorandum and future rulemaking, welcome as they are, are only part of the solution. Training and reinforcement are needed for employees at all levels. As the Langbehn case shows, an admitting clerk can be as powerful as the chief of medicine in banning visitors. Hospital workers have differing beliefs, customs, and biases. They are entitled to hold these views, but in their role as health care providers, they should not express or impose them on the patients they treat or their visitors.
I wrote my first article about “people caring for ill family members” – I didn’t know the term “family caregivers” then—back in 1989 (“AIDS and Changing Concepts of Family” in A Disease of Society: Cultural & Institutional Responses to AIDS, edited by Dorothy Nelkin, David P. Willis, and Scott V. Paris, Cambridge University Press,1991). I asked “Who counts as family?” and offered as a working definition: “Family members are individuals who by birth, adoption, marriage or declared commitment share deep personal connections and are mutually entitled to receive and obligated to provide support of various kinds to the extent possible, especially in times of need.” I added, “Sickness tests family strengths and resiliency as few other crises do.” Now I sometimes just say, “When illness strikes, family is whoever shows up – and stays.”
Carol Levine is director of the Families and Health Care Project of the United Hospital Fund. She is a Hastings Center fellow.