End-of-Life Choice, Death with Dignity, Palliative Care and Counseling

Posts TaggedLGBT

Two Movements Approach the Tipping Point

After years of gains and setbacks, the national movement for same-sex marriage is enjoying a period of remarkable success.  Massachusetts and Connecticut became first adopters in 2004 and 2005 and that came after twenty years of advocacy. Turmoil followed, especially in California. But in 2009 three states (Iowa, Vermont, New Hampshire) approved same-sex marriage. New York followed last June, and now the Washington and Maryland legislatures have acted in quick succession.  Delaware’s governor predicts his state is not far behind.

It’s making me think about similarities between the movement for death with dignity and LGBT dignity. Like other movements for human liberty, seminal events mark a trajectory toward inevitable success.

1. It starts with consciousness-raising.  As human rights lawyer Sylvia Law describes, one day a light comes on. People experience their own private “Aha!” moment. Then more do, and multiple sparks of recognition illuminate the injustice for all to see.  In the 1970s LGBT advocates worked hard to muster light in the darkness of false assumptions, degradation and violence.

For end-of-life choices, common wisdom was that with death, comes suffering.  We’ve heard doctors tell a family, “We all have to suffer some, don’t we?”  In our movement sparks first fly when people witness end-of-life agony and indignity and think, “This is not right.” Grief magnifies outrage, and awareness dawns that American law and medicine fails us at life’s end.

2. Soon fear, shame and guilt no longer keep outrage in check. People in our movement share this with LGBT communities.  We all have stories of deaths of loved ones. Maybe we shrank from the bedside and let doctors continue with tubes, needles and machines long after any good could come of it. Maybe we heeded an urgent plea to increase the morphine and speed death’s advance. Or maybe we didn’t and feel guilty for that. Maybe Dad shot himself when he was dying of cancer and the family lives with that trauma.

Powerful forces conspire to keep talk of death taboo. We’re told it’s wrong to seek the relief of death when cancer’s final agonies take hold.  But telling our stories at kitchen tables, church basements and community gatherings turns fear into courage, grief into action. My most moving experiences come when we open a conversation about end-of-life choices, see pent-up emotion flood the room and see how eagerly people sign up for advocacy and public service.

3. The Vatican fights both movementsCatholic hierarchy uses its political power to oppose both movements. With hysterical doomsday rhetoric, it denounces gay and lesbian human rights as an “ideology of evil” and the movement for end-of-life choices as a “culture of death.”  To defeat Death with Dignity bills, local bishops have deployed their lobbyists and issued threats of shunning and denunciation from the pulpit to non-Catholic lawmakers and denial of the sacrament of communion or excommunication, to Catholic ones.  In a surprising turn of events, Roman Catholic leaders in Maine announced they will play no role in fundraising, staffing, advertising, or campaigning against marriage equality.

I hope Catholic leadership’s decision to stay its hand in Maine arises from a calculation of changing sentiment in society.  If Gays and Lesbians are beyond religious oppression it’s because they are no longer vulnerable to shame and guilt for who they are or the rights they seek. Today lawmakers are more likely to embrace their Gay and Lesbian sons and daughters publicly than abandon them in silence and vote against their liberty.

If the pattern holds, it won’t be long before lawmakers are telling stories of the tragically painful deaths they’ve witnessed, rejecting the rhetoric of shame and voting courageously to empower people with choices at the end of life.

Healthcare Equality a Must in American Hospitals

The Miami Herald

Posted on Wed, Jun. 16, 2010


What happened to me and my family is unimaginable for most people. In 2007, the person with whom I shared my life for 18 years was rushed to the emergency room with a brain aneurysm. Far from home on vacation with our children here in Florida, my partner was taken to Jackson Memorial Hospital, and I followed closely behind.

When I arrived shortly afterwards, I was told I couldn’t go to her side and instead paced around the lobby wondering about her condition. By the time they finally let me in hours later, it was with a priest as he performed last rites.

Dealing with any medical emergency is a nightmare, but because my partner Lisa and I were both women, some of our last moments together were robbed from us. I was told by an employee at Jackson that we happened to be in an “anti-gay city and state.”

The American healthcare system failed us. Even though I had power of attorney, JMH had no policies in place to explicitly protect lesbian, gay, bisexual and transgender (LGBT) patients and their families, and so I was treated as a stranger. The hospital still refuses to apologize.

My life changed that day, and not only because Lisa was gone. I realized I had a story to tell, not just about LGBT rights — but about the human right to decide who should be with you in sickness and in death.

Earlier this year I received a call from President Obama telling me that he wanted no other family to have to go through what we did. In a memo directing the secretary of the Department of Health and Human Services to protect the visitation and medical decision-making rights of LGBT people, he wrote, “There are few moments in our lives that call for greater compassion and companionship than when a loved one is admitted to the hospital.”

Luckily, the president was not alone in seeing the need for change. The Joint Commission, the agency that accredits and certifies healthcare facilities nationwide, recently announced new standards that require fully inclusive nondiscrimination policies. Taken together, these developments mean that LGBT patients and their families will have dramatic new protections for healthcare equality — in hospitals nationwide, from Florida to Alaska and everywhere in between.

And it’s a good thing, because my story is all too common. A new analysis of healthcare equality by the Human Rights Campaign (HRC) Foundation found that more than nine out of 10 U.S. healthcare facilities don’t have fully inclusive policies toward LGBT people. Out of the thousands of hospitals nationwide, just 11 individual facilities and one network of 36 hospitals reported providing comprehensive healthcare equality. And tragically, less than a third grant equal-visitation access for same-sex couples and same-sex parents through explicitly inclusive policies.

In Miami, the report found four healthcare facilities that don’t include “sexual orientation” or “gender identity” anywhere in their Patients’ Bill of Rights or nondiscrimination policy: Baptist Hospital, Cedars Medical Center, Mount Sinai Medical Center and Brooks Rehabilitation Hospital.

Major healthcare providers are starting to understand change is coming, with meaningful results. Last week, Kaiser Permanente updated their Patients’ Bill of Rights and visitation policies to fully protect LGBT patients and their families from discrimination. One of the nation’s largest not-for-profit health providers, Kaiser Permanente’s network of 36 hospitals and 430 medical offices has a fully inclusive nondiscrimination policy for LGBT patients effective June 1.

The work of the HRC Foundation and Kaiser Permanente should put healthcare facilities on notice: Move toward greater inclusiveness, sooner rather than later, because that’s where America is headed.

Janice Langbehn is the surviving partner of Lisa Pond and advocate for LGBT healthcare equality. She lives in Lacey, Wash.