When Parents Disagree With The Doctors

When Parents Disagree With The Doctors

Posted on Wednesday, December 11th, 2013 at 10:05 am by lifemediamatters

“You are considered sane until you disagree with the doctor” is an old adage in clinical ethics circles. We rarely question a patient’s ability to make decisions if the patient’s choice agrees with what the physician wants. I have had several cases in which I have been asked to look at capacity issues for a patient showing signs of dementia. When I asked who consented for that patient’s procedures to that point, the response was usually, “the patient.” This incongruence seemed to escape notice. When you disagree with the physician, then questions arise about your rationality and capacity to make decisions. Disagreement is when the psychiatry consult is requested to see if you are competent and capacitated.

So what happens when a parent disagrees with the physician’s recommendation? As in most ethical issues, the answer is, “it depends.” If the recommended treatment is elective, then not much might happen. If the treatment is state-mandated or a public health requirement such as a vaccination, then a child may not be able to enter a public school. If the physician suspects that an injury may have been caused by abuse and neglect, then your child may be taken away from you while an investigation is conducted.

This presumes that death from a natural disease is a bad that must be fought. Even more importantly, it presumes that not fighting against the possibility of death is wrong.

In recent years, there have been a series of high profile cases in which parents chose not to pursue chemotherapy for their children. And in return, the state has sought to force treatment on the children against their parents’ wishes. In 2003, Parker Jensen in Utah was diagnosed with Ewing’s Sarcoma (a cancer usually found in bones) after having a tumor removed from his mouth. Doctors prescribed chemotherapy, but the parents said no- questioning the accuracy of the cancer test and stating that the cure was worse than the disease, if he had it. Physicians notified child protective services, and the agency sought a court order for the child to be given the chemo. To preserve their decision-making capacity, the family fled the state. Mr. Jensen negotiated a one-year probation for him and his wife and the agreement to go to an oncologist of their choice. With public outrage, the state backed down, and a number of laws protecting parents’ rights in Utah were proposed. Parker never did get chemo, and a decade later, he does not have cancer.

Parker Jensen, 2008, subject of a lengthy legal battle in Utah. Courtesy Jensen family.

Parker Jensen, 2008, subject of a lengthy legal battle in Utah. Courtesy Jensen family for the Deseret News.

Now, history repeats itself. Sarah, an 11-year-old girl with leukemia, and her Amish family fled Ohio to avoid the chemotherapy she had been receiving. The parents chose to stop the treatment because of how sick the chemotherapy was making her, and instead, they chose to try natural therapies. Her physicians believe that the cancer is fatal without treatment, and that they have a moral obligation to make sure the girl receives chemotherapy. Thus, Akron Children’s Hospital took the family to court. The court appointed a guardian—Maria Schimer, a registered nurse—to make medical decisions for Sarah after ruling that the religious convictions of the parents do not outweigh the rights of the state to protect the child. Last week, the guardian ceased efforts to force chemotherapy on Sarah. The family states that their resistance to chemo is not based in religious belief, but in how sick it was making their daughter.

In both cases, the medical establishment said that without treatment, the patient would die. This presumes that death from a natural disease is a bad that must be fought. Even more importantly, it presumes that not fighting against the possibility of death is wrong. What if the parents had said they prefer hospice care to continued invasive treatment? Does the right to refuse treatment end with the individual alone? That is, can only the person who is not to receive treatment make that choice? Then, a parent could not make a refusal choice for a child. If that is true, then a medical power of attorney should not be permitted to make refusal choices for their wards either. The law wants to have it both ways, with only the legal line of age of majority separating the two. Yet there are many 15-year-olds who are a lot more mature than some 40-year-olds. Perhaps no one should be permitted to make this choice to refuse treatment? That seems to be the message in these cases.

Jensen famliy, KSL TV file photo

Jensen famliy, KSL TV file photo

The physicians, hospitals and even states seem to believe that the Jensens were wrong, because they did not believe the accuracy of the diagnosis; and Sarah’s parents were wrong, because they were more concerned with their daughter’s immediate, rather than long term health. Can a parent choose dying over medical treatment for a child? The answer, again, is it depends. In both of these cases, the families were viewed in the media as out of the mainstream: an Amish family in one case, and a Latter-Day Saint in the other. Although religion was not a cause cited by any of the parents, it was the message replicated in the media. It becomes easier to distance ourselves from a case when the people involved are castigated as being “unlike us.” The reality is, this could have been any family.

The state held that its interest in the welfare of the child was more important than the parents’ right to make choices for their children. In other words, the state said that the parents were wrong for disagreeing with the doctors. Such disagreement rose to the level of being considered child abuse. Child abuse is defined in the Oxford English Dictionary as “maltreatment of a child, esp. by beating, sexual interference, or neglect.”  Those elements were certainly lacking in this case. In fact, Sarah’s parents were trying to save her from what they saw as intentional harm to their child. This creates a chilling environment for all parents. Doing anything less than everything for a child facing a potentially deadly disease is abuse. Following the faith and reason in which you have raised your children may be abuse. Disagreeing with the doctor is reason enough to have your parental rights curtailed.

With adults, there would be little question that a person of sound mind has the right to make his or her own end of life medical decisions. For patients who lack capacity or competency to make decisions, a surrogate decision-maker makes those choices. Children, by definition, lack legal competency to make their own choices. Thus, a parent or guardian who presumably has the child’s best interest at heart makes surrogate choices. The line between parents’ rights and state interests has always been when the child’s health and welfare are at risk. Did Sarah’s parents or the Jensens not care about their children? Did they take efforts to harm their kids? The answer is no. These parents took every effort to protect their children from what they saw as an obtrusive medical establishment and a state overreaching its authority.

Another mantra in medicine is to always err on the side of life. The child, this argument states, may have different beliefs and values than the parents and should be permitted to grow up and make their own choices. But if the child can’t grow up, then the child never has the chance to decide his or her beliefs. Therefore, all efforts must be made to let the child grow up. That requires forcing on the child what the state and medicine consider to be the best treatment, and it requires an all-out war against death. In other words, if you believe and act differently, be prepared to risk your right to choose for your child.

I am not suggesting that we need to acquiesce to every decision a parent makes. Certainly education, discussion and even influence are important parts of both medical care and public health practice. And child abuse is a very real threat. What I am suggesting is that it is too easy to paint a family as “the other” or “not like us” when they choose differently than medicine and the state thinks they should. If every child with cancer is required to get treatment, then pass a law and make it the case. But as long as we continue with the pretense that parents can make decisions for their children, then society may disagree with some of those choices, but should only step in when a real danger exists. And choosing not-to-treat does not always equal abuse.


ALS Patient, Who Fought Same Sex Marriage Ban and Married on Airport Tarmac, Dies

Posted on Monday, October 28th, 2013 at 8:06 am by lifemediamatters

Arthur And Obergefell Speak To The Cincinnati Enquirer

Arthur and Obergefell spoke to The Cincinnati Enquirer after their marriage

John Arthur, the terminally ill man who flew from Cincinnati to Maryland in July to marry his  longtime partner on an airport tarmac, died this week of complications associated with Lou Gehrig’s disease at age 48. His action this summer sparked a legal battle that would force Ohio to recognize his marriage and those of other same-sex couples.

After a ceremony of less than 10 minutes at the Baltimore International Airport, Arthur and his partner, Jim Obergefell, immediately flew back to Cincinnati before Arthur’s health could further deteriorate. Arthur had been diagnosed with amyotrophic lateral sclerosis (ALS) in 2011, an incurable and progressive neurodegenerative disease.

Arthur and Obergefell had been a couple since 1992, but they decided to marry only after the U.S. Supreme Court’s decision on June 26 to strike down portions of the federal Defense of Marriage Act (DOMA).

Both men indicated that they wished to be buried together in Arthur’s family plot, one which is restricted to direct descendants and spouses. So the couple sued Ohio Gov. John Kasich and Ohio Attorney General Mike DeWine, urging the state to recognize their union. U.S. District Judge Tim Black ruled that Obergefell may be listed as Arthur’s surviving spouse.

The terminal nature of Arthur’s disease expedited the case through the judicial system. The couple’s attorney argued that the pair would face “irreparable harm” if Arthur’s death certificate listed him as “single.”

“We’ve been beside each other for 20 years. We deserve to be beside each other in perpetuity,” Obergefell testified.

“It’s huge,” Obergefell said on MSNBC’s The Last Word shortly after the ruling. “It’s something we never thought we would see in our lifetime. It just helps us feel more valid, more valued, and prouder to be Ohioans, prouder to be Americans.”

Arthur was born in Chicago in 1965.

Judge Black also referenced the recent Supreme Court ruling in his 15-page opinion:

Under Supreme Court jurisprudence, states are free to determine conditions for valid marriages, but these restrictions must be supported by legitimate state purposes because they infringe on important liberty interests around marriage and intimate relations.

In derogation of law, the Ohio scheme has unjustifiably created two tiers of couples: (1) opposite-sex married couples legally married in other states; and (2) same-sex married couples legally married in other states. This lack of equal protection of law is fatal.

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Culture Wars And The End Of Life

Posted on Tuesday, August 13th, 2013 at 4:32 pm by lifemediamatters

“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.


Federal Judge Recognizes Dying Ohio Man’s Gay Marriage

Posted on Friday, July 26th, 2013 at 10:12 am by lifemediamatters

A same-sex couple of more than 20 years can now be buried together in an Ohio cemetery after a federal judge ruled to recognize the out-of-state marriage of the two men.

Cincinnati

Frame of James Obergefell and John Arthur

James Obergefell and John Arthur, both 47, married earlier this month on an airport tarmac in Maryland- a state which began to recognize same-sex marriages in January of this year. The couple immediately flew back home to Cincinnati before Arthur’s health further deteriorated. The Cincinnati Enquirer reports that Arthur was diagnosed two years ago with ALS, an incurable and progressive neurodegenerative disease.

Both men wish to be buried together in Arthur’s family plot, which is restricted to direct descendants and spouses. The couple sued Ohio Gov. John Kasich and Ohio Attorney General Mike DeWine, urging the state to recognize their union. U.S. District Judge Tim Black has ruled that Obergefell may be listed as Arthur’s surviving spouse.

“We’ve been beside each other for 20 years. We deserve to be beside each other in perpetuity,” Obergefell testified. The couple decided to get married because the Supreme Court struck down the Defense of Marriage Act, a law that denied gay couples many federal benefits.

“It’s huge,” said Obergefell on MSNBC’s The Last Word. “It’s something we never thought we would see in our lifetime. It just helps us feel more valid, more valued, and prouder to be Ohioans, prouder to be Americans.”

However, the limited and temporary restraining order supporting their request will not apply to any other couples in Ohio.

According to Black, Ohio’s ban on same-sex marriage denies gay couples equal protection under the law. He noted that Ohio recognizes many out-of-state marriages not able to be performed in the state, such as those between first cousins and minors. “This is not a complicated case,” he stated, asking how Ohio can single-out same-sex marriages as ones the state will not recognize.

Furthermore, Black also referenced the recent Supreme Court ruling in his 15-page opinion:

“Under Supreme Court jurisprudence, states are free to determine conditions for valid marriages, but these restrictions must be supported by legitimate state purposes because they infringe on important liberty interests around marriage and intimate relations.

“In derogation of law, the Ohio scheme has unjustifiably created two tiers of couples: (1) opposite-sex married couples legally married in other states; and (2) same-sex married couples legally married in other states. This lack of equal protection of law is fatal.


‘The Quality of Life’: End Of Life On stage

Posted on Tuesday, November 20th, 2012 at 5:34 pm by Life Matters Media

The Den Theatre’s adaptation of Jane Anderson’s play “The Quality of Life” addresses many complex and often unspoken concerns baby boomers face as they begin to consider the end of life. The play focuses on Dinah and Bill (Jennifer Joan Taylor, Stephen Spencer), a devout, evangelical and conservative married couple from Ohio. They visit their freethinking agnostic cousins, Jeannette and Neil, (Liz Zweifler, Ron Wells) after a forest fire destroys their California home.

Dinah and Bill recently lost a young-adult daughter, their only child, to an unspeakable crime, and their own relationship has been strained since. Neil is facing late-stage prostate cancer, and Jeannette is unable to imagine living her life without him.

Neil uses marijuana to dull his cancer pain, a practice Bill judges harshly. When Bill and Dinah learn of Neil’s plans to end his own life in the coming weeks, the couple’s visit to California is complicated even more.

The couples’ ideologies clash as they attempt to work through their different beliefs about religion, medical marijuana, assisted death, morality and mortality- all within feet of the audience. Audiences become so invested in the characters that tears flow, an experience the actors call cathartic.

Wells, Spencer, Zweifler and Taylor

Life Matters Media spoke with the cast about their experiences with the play.

Why is discussing the end of life taboo in America?

Spencer: I think it’s such a cultural thing. I have friends who are more like Neil and Jeannette who’ve had a death in their family. They read through the Tibetan Book of the Dead and chanted and their whole family was around. They made a beauty of death because they saw it as a passing. In America, death is taboo. A play like this opens up the discussion.

Wells: I think it has a lot to do with our Puritanical history, our religion. It seems to me that people elsewhere in the world, particularly in Europe, have a healthier view of life and death. A lot of it gets tied up in our beliefs and everyone wants to live. I think this play, at the heart of it all, is about “how do you say goodbye?”

Taylor: Because it hurts. We don’t like to talk about things that hurt us. I love being in a play that provokes. It’s been a dream come true to be part of a story that’s so important. I’ve met people who’ve lost their children and came to this play. But they left feeling relief, in a cathartic way.

Zweifler: I’ve been nervous about people coming to see it for that reason. But they seem to really like it.

How do you feel about laws such as Question 2, which was just voted down in Massachusetts? It would have allowed physicians to prescribe life-ending drugs to some willing terminally ill patients.

Zweifler: I’m open to it, but when someone gets to decide one’s fate, that’s worrisome. But I like the idea of when it’s your time, you get to decide. But the balancing act is when do you let people go? There are new medical technologies that can keep people alive.

Wells: I have no problems with the issue at all. But I understand how people could fear these types of laws.

Taylor: I was raised Catholic and was raised to believe that suicide is a sin, and that you go to hell if you do it. Some of that is stuck in me. I don’t like the idea of someone being able to end one’s life. I like the idea of comfort at the end of life. I would probably not vote for it, but you shouldn’t have to die in pain. Not when there are good drugs around.

Do you identify with your characters?

Taylor: I’m more like Dinah than I would have ever thought. I think of myself as this liberal person, but I have this little conservative side to myself. I never really thought of it until I played Dinah. I would say things that Dinah would say. I thought I was Jeannette.

Wells: Neil is the most personal role I’ve ever played. Neil is the man I want to be. I see a lot of myself in him.

Zweifler: I definitely have Jeannette characteristics but I’m not as hard on people as Jeannette is.

The Chicago Tribune’s Chris Jones recommends this adaption. “In a second-floor walk-up, you’ll find honest Chicago acting, deep thoughts, honest writing about societal change and compassion for the messiness of all our value systems, let alone the way we want to face our end,” he wrote in his three-star review.

The Chicago Theatre Review’s Rachel Parent has called the play ”a strong note in a beautiful place.”

Tickets are available here