End-of-Life Choice, Palliative Care and Counseling

Posts TaggedSylvia Law

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.

Legal Interpretations Differ but Public Opinion United

Trust Doctors, not Government to Guide Aid in Dying

HONOLULU – Compassion & Choices Hawaii, the local affiliate of the nation’s oldest and largest nonprofit organization working to improve care and expand choice at the end of life, and the Hawai’i Death with Dignity Society today responded to an opinion on “assistance with dying” by Hawaii’s attorney general. The organization joined attorneys and physicians in expressing confidence that when the time comes, patients can request, and doctors will provide, aid in dying. Terminally ill, mentally competent Hawaii patients can request a prescription that gives them the peace of mind of knowing they could achieve a peaceful death in their homes, with their families and loved ones.

“Almost everyone in Hawaii agrees that terminally ill individuals, not government, should make end-of-life decisions and control end-of-life options,” said Robert “Nate” Nathanson, M.D., a founder of Hospice Hawaii. “The people of Hawaii overwhelmingly trust doctors to establish guidelines and respond appropriately to requests for medication to bring about a peaceful death if suffering becomes unbearable.” The results of a recent poll bear out Dr. Nathanson’s assertion. In the poll, 90% agreed the decision about aid in dying is a personal one between patient and doctor. Eighty-one percent (81%) said they trust their doctors to respond appropriately to a request for medication to bring about a peaceful death if suffering became unbearable. A complete summary of poll results can be found at CompassionAndChoicesHI.org.

The reasoning of the attorney general’s opinion is flawed. Focusing narrowly on a single 1909 statute, the opinion failed to appreciate how a constellation of Hawaii laws vests its citizens with broad autonomy over end-of-life decision-making. It does not mention findings in other states, including the persuasive authority of Baxter v. Montana or the recognition by Georgia’s attorney general that his state’s law against “assisting a suicide” does not cover aid in dying.

“The palliative benefits of aid in dying are very significant,”said Dr. Nathanson. “It offers relief for terminal pain and anxiety. And it lets some patients live longer and with peace of mind during their last days. This is comfort care at its best. When doctors cannot cure, at best they can provide relief.”

Chaired Professor at NYU Law School, frequent visiting Professor at Richardson and resident of Kailua Sylvia Law said, “Legal opinion differ and change over time. Hawaii has many laws which offer patients autonomy in end-of-life care and pain management. The state does not outlaw aid in dying with the sort of specificity required of a criminal prohibition. So it is reasonable to conclude Hawaii physicians can respond to these requests subject to best practices, without fear of prosecution.”