"I'm sorry."
Those two little words are what Janice Langbehn has been waiting to hear since February 2007, when her partner of 18 years, Lisa Pond, just 39 years old, died separated from Langbehn and their children.
But the apology did not come from Jackson Memorial Hospital in Florida, where Pond lay dying from a brain aneurysm suffered Feb. 18, 2007, hours after the family boarded the R Family Cruise. Instead, President Barack Obama said those words to Langbehn in a phone call April 15, 2010 when he phoned her in Olympia, Wash., from Air Force One, ironically while it circled over Miami, where Jackson Memorial is located.
Obama called Langbehn to explain a memo he had signed that day to address discrimination LGBT families face from healthcare facilities.
The Obama memo directs the Secretary of Health and Human Services, Kathleen Sebelius, to move forward on steps to address hospital visitation and other related LGBT healthcare access issues. The resulting regulation is expected to require hospitals that receive federal Medicare and Medicaid funding, which is almost every hospital, to allow patients to designate who may visit them. It also calls for help for hospitals in complying with healthcare directives and other documents, and it asks HHS to conduct a study of healthcare barriers facing LGBTs.
It was just a coincidence that earlier that week Jackson Health System and Jackson Memorial Hospital issued a statement changing their policies to be more responsive to the needs of LGBT families, but Jackson stopped short of saying they did anything wrong in the Langbehn-Pond case, and they did not apologize to Langbehn and their three adopted children ( Danielle, David and Katie ) . The family has another son, Michael, who was not with them at the time.
While her partner was dying, this is what Langbehn encountered: "A social worker appeared to inform me that I was 'in an anti-gay city and state.' He explained that this meant I would not be allowed to see Lisa or make decisions about her care without a Health Care Proxy. I asked for his name and fax number and within 20 minutes I had contacted close friends in Olympia, Wash., who raced to our house, found all our legal documents including our Durable Power of Attorney, Living Wills and Advance Directives and faxed them to the hospital." But the hospital still denied Langbehn access and Pond died without her family at her side.
Langbehn and her attorneys from Lambda Legal lost their federal lawsuit last year against Jackson, but the hospital did change their policy after meeting with LGBT organizations and individuals. The meetings began in May of 2009, and were possibly timed as a result of The New York Times report on the case. Obama told Langbehn April 15 that he, too, was motivated by the story about her family in The Times last May.
Langbehn, speaking April 17 with Windy City Times, said she was shocked to learn that the White House would be calling her. About two hours ahead of the call, she had the heads up, and one hour later an aide called and said stay off the line, that Obama would be calling.
"He said, 'Hello Janice, this is Barack Obama,' like he was my neighbor," Langbehn said. "He apologized for the loss of Lisa, and how we were treated, and called it outrageous. He talked about what his memo meant. I thanked him. I told him I was very honored and humbled that our family would be known to him. I thanked him on behalf of all families impacted by this change."
Langbehn said the president's getting involved "really hit home for the kids." She said her youngest, David, said it now means that "any other kids like me that have two moms, and one of the moms is dying, they get to see her."
She said the outpouring of support has been amazing, including appearances on national talk shows. The response had been universally supportive until late Friday night, April 16, when Jackson Memorial was trying to push back, saying that Langbehn's allegations of discrimination were false.
"But they won't say why I wasn't allowed to see her for eight hours," Langbehn countered. "Or why she was not moved to a room where her family could see her. So apologize for something, if it was not a gay issue. They let her die with her partner of 18 years and their children right outside."
"Last night, I was counting all the people I had contact with during those eight hours," Langbehn said. It totaled about 20 minutes of conversations, with different people for a few minutes each. "There was no continuum of care, no compassion," she said.
"Lambda Legal applauds Jackson Memorial's work with the coalition to review and expand policies and training materials to help address the needs of same-sex couples and their families, but we urge the hospital to finish the job," said Beth Littrell, senior staff attorney in Lambda Legal's Southern Regional Office based in Atlanta, who was lead counsel on Langbehn v. Jackson Memorial. "The hospital should issue an official apology to the Langbehn-Pond family and JHS should have a grievance procedure in the case of visitation denial that can be acted on quickly in an emergency situation."
Last September, the Court rejected Lambda Legal's lawsuit filed against Jackson on behalf of Langbehn, ruling that no law required the hospital to allow her and their children to see Pond.
The subject listed on Obama's April 15 memo is: "Respecting the Rights of Hospital Patients to Receive Visitors and to Designate Surrogate Decision Makers for Medical Emergencies."
"The steps that President Obama outlined are a great leap forward in addressing discrimination affecting LGBT patients and their families," said Kevin Cathcart, Lambda Legal executive director. "These measures are intended to ensure that no family will have to experience what the Langbehn-Pond family did that night at Jackson Memorial Hospital. We are so proud of Janice and her family -- she stood up and told her story and it made a difference."
Some saw the memo as only a partial solution to larger problems.
"The President's directive is a small, but welcome step forward," said Evan Wolfson, executive director of Freedom to Marry. "The President's memo is particularly noteworthy in its acknowledgment of how same-sex couples are uniquely affected by marriage discrimination and are thus in need of this kind of remedial presidential directive. Of course, the real cure is to end exclusion from marriage, pass the federal Respective for Marriage Act, and provide all families the full measure of protections. Piecemeal steps, addressing one protection at a time, will take up a lot more time than either the Administration or American families can afford."
What follows is the Obama memo in full:
"There are few moments in our lives that call for greater compassion and companionship than when a loved one is admitted to the hospital. 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.
"Yet every day, all across America, patients are denied the kindnesses and caring of a loved one at their sides -- whether in a sudden medical emergency or a prolonged hospital stay. 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. Also uniquely affected are gay and lesbian Americans who are often barred from the bedsides of the partners with whom they may have spent decades of their lives -- unable to be there for the person they love, and unable to act as a legal surrogate if their partner is incapacitated.
"For all of these Americans, the failure to have their wishes respected concerning who may visit them or make medical decisions on their behalf has real consequences. It means that doctors and nurses do not always have the best information about patients' medications and medical histories and that friends and certain family members are unable to serve as intermediaries to help communicate patients' needs. It means that a stressful and at times terrifying experience for patients is senselessly compounded by indignity and unfairness. And it means that all too often, 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.
"Many States have taken steps to try to put an end to these problems. North Carolina recently amended its Patients' Bill of Rights to give each patient "the right to designate visitors who shall receive the same visitation privileges as the patient's immediate family members, regardless of whether the visitors are legally related to the patient" -- a right that applies in every hospital in the State. Delaware, Nebraska, and Minnesota have adopted similar laws.
"My Administration can expand on these important steps to ensure that patients can receive compassionate care and equal treatment during their hospital stays. By this memorandum, I request that you take the following steps:
"1. Initiate appropriate rulemaking, pursuant to your authority under 42 U.S.C. 1395x and other relevant provisions of law, to ensure that hospitals that participate in Medicare or Medicaid respect the rights of patients to designate visitors. It should be made clear that designated visitors, including individuals designated by legally valid advance directives ( such as durable powers of attorney and health care proxies ) , should enjoy visitation privileges that are no more restrictive than those that immediate family members enjoy. You should also provide that participating hospitals may not deny visitation privileges on the basis of race, color, national origin, religion, sex, sexual orientation, gender identity, or disability. The rulemaking should take into account the need for hospitals to restrict visitation in medically appropriate circumstances as well as the clinical decisions that medical professionals make about a patient's care or treatment.
"2. Ensure that all hospitals participating in Medicare or Medicaid are in full compliance with regulations, codified at 42 CFR 482.13 and 42 CFR 489.102 ( a ) , promulgated to guarantee that all patients' advance directives, such as durable powers of attorney and health care proxies, are respected, and that patients' representatives otherwise have the right to make informed decisions regarding patients' care. Additionally, I request that you issue new guidelines, pursuant to your authority under 42 U.S.C. 1395cc and other relevant provisions of law, and provide technical assistance on how hospitals participating in Medicare or Medicaid can best comply with the regulations and take any additional appropriate measures to fully enforce the regulations.
"3. Provide additional recommendations to me, within 180 days of the date of this memorandum, on actions the Department of Health and Human Services can take to address hospital visitation, medical decisionmaking, or other health care issues that affect LGBT patients and their families."
Janice Langbehn posted comments on her blog ( thelpkids.com ) about the day's events: "For the past three years I have been speaking at large and small events, posting here on the blog, and have been saying over and over: that holding someone's hand as they die is NOT a GAY right, it's a HUMAN right; and today President Barack Obama agreed with me. He knew Lisa's name, and he knew our story and offered the long-awaited apology, that Jackson Memorial STILL refuses to give, why is that? The President could."
She continued: "Thank you to Lambda Legal for so bravely taking our case, and in our loss and dismissal more has come than winning the largest jury settlement could have made the changes that happened today. I said at the time of Lisa's death with one stroke of a pen, the coroner in Florida took away our 18 years by listing Lisa as single, never married, but today with a stroke of the pen, the President recognized we were a couple deserving of all the same rights of straight Americans."
In a speech to the Family Equality Council later the same year Pond died, Langbehn spoke eloquently of her late partner: "Lisa Pond was a wonderful caring person who gave endlessly to others. She took care of countless children when they were abused or neglected. She nurtured even more through her community service and as a Girl Scout Leader. Through organ donation, four people received another chance at life when they received her kidneys, liver and heart. As for me, and our wonderful children, we are left with a hole in our hearts that will never be filled."
Lisa Pond, and Janice Langbehn, continue to give: They inspired a president to change regulations, and to change history.
