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Quality of life at the end of life

Culture Wars And The End Of Life

“I would like to propose that the end of life be sanctioned as a culture war-free zone.”

Perhaps you’ve been following the heart-wrenching story that’s been coming out of Ohio this summer. It involves the odyssey of John Arthur and his partner of 20 years, Jim Obergefell. John is in hospice care; he is in the final stages of amyotrophic lateral sclerosis, or ALS, a progressive neurological disease. ALS robbed him of his ability to walk and talk, and very soon- it will kill him. John and Jim wanted to marry before John died, but Ohio prohibits marriage between same-sex partners. Their only option was to travel to another state.

When the Supreme Court struck down DOMA (the Defense of Marriage Act), Jim and John knew they had a very brief window of opportunity to codify their relationship in the same way as any loving, heterosexual couple might. They chose to travel to Maryland to marry, but getting there and back would be a daunting task. John needed a medical transport plane that could accommodate his stretcher- a trip that would cost some $13,000. Undeterred, they appealed to friends and family for help. Their appeal was met by enormous generosity, and in a matter of days, they had raised the necessary funds.

By mid-July, all was ready. Jim, John, a nurse, two pilots trained in emergency medicine and John’s aunt Paulette- an ordained minister- boarded a Lear jet in Cincinnati for the short flight to Baltimore. The marriage ceremony took place on the airport tarmac and lasted only seven and a half minutes. A champagne toast followed. After just 56 minutes on the ground, they were headed back to Cincinnati. A triumph of the human spirit, I dare say.

Arthur And Obergefell Speak To The Cincinnati Enquirer

Arthur And Obergefell Speak To The Cincinnati Enquirer

John and Jim’s marriage license could change many things about John’s end of life care and the disposition of his estate. Health insurance, for example, might be less of an issue now that they are legally married. Their marriage license might very well open doors to other legal remedies for thorny problems like Social Security benefits, income and estate tax, probate concerns and the Family Medical Leave Act. But, none of this has been tested. No one yet knows what federal benefits a same-sex couple might qualify for if they live in a state that doesn’t recognize their marriage. What are the implications for a couple- that leaves their state of residence that bans same-sex marriage- to marry in another state that allows it? It will be years before this is all sorted out.

Within days of this headline-grabbing wedding, a federal judge in Ohio ordered state officials to recognize Jim and John’s marriage. When John dies, his death certificate must acknowledge Jim as his spouse, so stated the decree. However, just one day later, Ohio Attorney General Mike DeWine appealed that judge’s ruling. The legal limbo thus continues. John won’t live to see the end of this.

I can’t help but think about how this culture war is further complicating John’s already difficult process of dying. I’ve had to ask myself: What about the professional people who attend John as he dies? Surely, each of them has an opinion as to the morality and the legality of Jim and John’s marriage. Will they be able to do their job while respecting the union and its privileges without letting their personal beliefs get in the way? A tall order that!

Despite new marriage equality laws on both the state and federal levels, the issue of compliance remains an open question. In the state of Washington, for example, we have had marriage equality since late last year. However, there have been several high-profile cases in which wedding vendors have refused service to same-sex couples. A florist would not- on religious grounds- provide flowers to one of her long-time customers, a gay man, when he asked her to supply arrangements for his wedding. Similarly, some wedding officiants, caterers and venue managers- because of their religious scruples- have also refused service to same-sex couples. Even some state registrars wanted an exemption, on religious grounds, from providing same-sex couples a marriage license. While these things are disconcerting and bothersome, they are not a matter of life and death. One can always find another florist or caterer, right? The same cannot be said of palliative and hospice care.

Can a doctor, pharmacist, nurse, social worker or attendant deny care or respect for the intimate relationship of one of their patients, on religious grounds? Can a parent or other family member interfere with the care of a dying relative, or usurp the rights of a dying person’s spouse simply because the spouse is of the same gender as the person dying? Right now, I believe, the answer is an unqualified “yes.”

That’s why I would like to propose that the end of life be sanctioned as a “culture war-free zone.” Dying is hard enough without having to worry about who will be honoring whom and what as we die. I believe that we all should be offered a refuge from such worries at the end of our lives. If the culture wars must continue, let them rage somewhere other than where our life, or the life of someone we love, is ebbing away.

2 Thoughts on “Culture Wars And The End Of Life”

  1. Better than a “culture free zone” , why not make it zone of personal choice? How, when or with whom one chooses to live or die should be a personal choice so long as it does not harm anyone else. It should be made without interference from religious extremists who wish to impose their beliefs on others.

    • the problem with that, Ken, is that a lot of conservative culture warriors think that some people’s private choices ARE harmful to them. and thus, they feel like they can inflict their point of view on anyone at any time. so just because i think my end-of-life choices hurt no one and they provide me with the comfort i will need, that doesn’t mean my choices will honored by someone who thinks contrary to me. that’s why i call for a culture wars free zone. assuming good will on the part of others is not all the effective.

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