End-of-life journeys often create ethical questions for patients, families

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This story pairs with “Utah legislators at odds over ‘death with dignity’ proposals.”

A young father of three fighting a physical and mental battle with the pain of cancer. A grandmother who wishes to be kept alive long enough for the birth of her grandchild. A husband with a terminal diagnosis after 30 years of marriage and a desire to die “his way.”

End-of-life journeys are as unique as the individuals facing them. Some feel they are able to obtain true peace before their passing, while others feel the options they wish for are not available to them.

Medical aid in dying, along with other practices associated with the “right to die” movement, are part of an ongoing legal debate, both locally and nationally. Medical aid in dying is not legal in Utah.

Choosing medical means to end one’s own life is also a part of a larger moral discussion. Along with the LDS Church, most major faith traditions, including Buddhism, Catholicism, Islam, and the Seventh-day Adventist Church, oppose assisted suicide and euthanasia, according to a 2013 Pew Research Center study.

However, according to a 2015 Gallup poll, a simple majority of Americans (56 percent) consider “doctor-assisted suicide” as “morally acceptable.” Currently physician-assisted suicide is legal in six states.

No matter a person’s circumstances or beliefs, those who are dying and the people who care for them all walk individual paths as they face the journey everyone ultimately must make.

John and Michelle’s story

It was Labor Day weekend 2016. As John Scharf remodeled his porch alongside his wife, Michelle, the couple discussed plans for their fast-approaching 30th anniversary and hopes for their upcoming decades of marriage. Despite his ongoing back and knee pain and overwhelming fatigue, John was thrilled to be outside, using his skills as a home builder and remodeler to build a new deck with his wife. Michelle said it felt like each board represented a dream they had for the future as they symbolically built the next 30 years of their lives.

The next week, John was diagnosed with metastatic prostate cancer.

In months since, their lives have changed quickly. John’s cancer has spread to his bones, now residing in his spine, hips and tibia. None of the treatments helped, and John’s cancer was declared terminal. John said he feels like he is stepping on nails each day, and numbness has developed in his fingers and arms.

Michelle Scharf sits next to her husband, John, as he expresses his thoughts on their present and future. Michelle said she fully supports her husband and any choices he makes. (Dani Jardine)

After getting home from their long-planned anniversary trip to Hawaii in early July, John said he now has about six months to live.

John said while he is not afraid to die, he is worried about what the end might be like for him and his family. While he hopes to die quickly, he said he is anxious about the process possibly taking months, leaving his body debilitated and forcing his family to be ready for his death at any moment. John and Michelle have four children; the youngest is 16.

Medical aid in dying is not legal in the state of Utah, although John and Michelle both said they wish it was an option available to them in their situation.

John said if he could choose, he would pick a day for his death when he is still fairly functional and gather his family around him to tell them he loves them. Then he would take the prescription pill used for medical aid in dying, listen to some music and fall asleep.

John compared his current future to shoveling snow. Instead of having an option to stop and go inside, he has no choice but to continue in pain until the end.

“Think about what it would be like, knowing that you get to keep on shoveling until you’re dead,” John said. “There is nowhere to go to warm up or anything. You just get to keep shoveling snow until you freeze to death.”

Dani
John Scharf gets emotional as he thinks about what the months leading up to the end of his life may look like. John said he wishes Utah had death with dignity laws so he could have more options when it comes to how he will die. (Dani Jardine)

He said it is inaccurate to say death with dignity is the same as suicide, because death with dignity is for those who are already dying. He compared it to those in the World Trade Center during 9/11, saying those who chose to jump from the burning building were not committing suicide.

John’s wife Michelle has spent 20 years as a doula, a birth companion trained to provide emotional, physical and educational support to mothers who are expecting, are experiencing labor or have recently given birth.

From her experience, she said she learned everyone has a path they must travel. Just as mothers want to choose how they bring their babies into the world, she said she feels those who are terminally ill should be able to plan their exit, if they choose to.

She said she loves John dearly and said it is that love giving her the strength to support and respect any decision he makes about his death.

“When he feels he is slipping away and he’s said, ‘I’ve had enough,’ I will support him in that because I love him enough to say, ‘I love you and it’s your choice and it’s OK,'” Michelle said.

Although they wish Utah had death with dignity laws, Michelle and John plan to remain in their home as they approach the end of John’s life. Michelle said they don’t fight anymore, and they treasure their time together.

They look for new ways to alleviate John’s daily pain, allowing him to spend as much time and energy as possible outside and working on projects. John said the best medicine for him is being able to work and do his best to keep providing for his family. He said once his body begins to shut down, he hopes his death will be quick.

“I like to be alive, not just live,” John said.

David and Simone’s story

David Jackson and his wife, Simone, were in their 30s with three children under the age of 9 when they found out about the tumor in David’s left lung in 1996. After an appointment looking into what they thought was pneumonia, Simone said they were shocked to find out David had stage four cancer and was given one to five years to live.

Simone said they went home hoping for a miracle; seven months later, David passed away.

Simone said David decided to forgo treatment, believing chemotherapy would do more harm than good to his health. In the months leading up to his death, she said he experienced large amounts of pain and became angry, frightened and depressed. He seemed to “check out” and had a hard time having their children around, with even the sounds of their voices bringing agitation, she said.

“For me, that was a real struggle too because he was cutting them off already and he wasn’t even gone yet,” Simone said.

David Jackson and his wife Simone pose for a family photo just weeks before David’s diagnosis. At the time, they had three children under the age of nine, including a 10-month-old baby. (Simone Black)

At the time, Simone was 30 years old with a young baby. She said the role of caregiver was often difficult, especially because her husband was not comfortable with many people visiting their home. Simone said she was able to find immense relief through hospice services, which gave her a break while David was attended to.

Simone said the advice she would give to caregivers in similar positions is to find a support group as soon as possible and to look for people who can help. She said going through the caregiving experience alone is isolating and strength draining, especially as they are learning how to be a caregiver. She emphasized the importance of caregivers remembering to take care of themselves as well.

Even though the months leading up to David’s death were challenging, Simone said she didn’t wish medical aid in dying was an option because she didn’t feel David could have made a clear decision during that time, and those months taught her many valuable lessons about love.

“I think we should leave it up to God to decide when your time is up. I don’t think we should start making that decision for ourselves,” Simone said. “I don’t think we know enough. We don’t see the whole picture or perspective.”

Simone currently works at a family funeral home and is a respite volunteer for Community Nursing Services. From those experiences as well as her own, she said she feels we live in a “grief-avoidant society” where people don’t want to deal with death.

“Two hundred years ago, we wore black for a year, and people would say, ‘I’m so sorry, who’d you lose?’ and you’d get to talk about it. Now, you have the funeral Friday and you’re back to work on Monday,” Simone said. 

Simone said she feels it has been a blessing to have known ahead of time about David’s oncoming death because the grieving process was able to start for her family as soon as they got the diagnosis. She said while working at the funeral home, she has noticed families have a much harder time when someone dies of a sudden death because of the lack of time to resolve things or say goodbye.

Simone said the grieving process is vital for those left behind by their loved one and while it is impossible to truly “move on” from someone you love, she feels it is important to adjust instead of pushing painful events away.

“You don’t recover from the death of a loved one. You become different, you change and the goal is to grow and become a better person,” she said.

Religious perspective

Religious leaders, scholars and ethicists from 16 major American religious groups explained in a 2013 Pew Research Center study how the teachings of their faith traditions approached physician-assisted suicide, euthanasia and other end-of-life questions.

In the study, only two religious groups — the United Church of Christ and the Unitarian Universalist Association — support the right of terminally ill patients to be able to make the decision to hasten their own death.

The other 14 groups generally do not support euthanasia or physician-assisted suicide. Buddhism, Hinduism, the National Baptist Convention, and the Presbyterian Church U.S.A. did not have formal statements or teachings against euthanasia or assisted suicide, but according to the study, still generally oppose the practice.

The other religious groups involved in the study included the Assemblies of God, Catholicism, The Church of Jesus Christ of Latter-day Saints, the Evangelical Lutheran Church in America, the Episcopal Church, Islam, Judaism, the Seventh-day Adventist Church, the Southern Baptist Convention, and the United Methodist Church.

According to Mormon Newsroom, an official resource at lds.org, the LDS Church is opposed to euthanasia, although their statement clarifies that removing “artificial means of life support” to allow a person to die from natural causes is not considered euthanasia.

“The Church of Jesus Christ of Latter-day Saints believes in the sanctity of human life, and is therefore opposed to euthanasia,” the statement said. “Euthanasia is defined as deliberately putting to death a person who is suffering from an incurable condition or disease. Such a deliberate act ends life immediately through, for example, frequently-termed assisted suicide. Ending a life in such a manner is a violation of the commandments of God.” 

Despite their opposition to euthanasia and physician-assisted suicide, all of the American religions in the Pew Research Study allow the terminally ill to discontinue life-sustaining medical treatment.

Professional perspective

Ronda Weaver is a chaplain and palliative care specialist for the Intermountain Utah Valley Regional Medical Center and her job is to help those with a terminal diagnosis receive as much comfort and care as they desire.

Ronda Weaver explains her role as a chaplain and palliative care specialist for the Intermountain Utah Valley Regional Medical Center. Weaver said her goal is to help those with a terminal diagnosis receive the care and comfort in the way they wish to receive it. (Savannah Hopkinson)

One of the patients Weaver has worked with is a grandmother who desperately wishes to be alive for the birth of her grandchild. Weaver said her responsibility then is to keep her patient alive as long as possible and help her in taking certain medications in order to obtain her goal.

“What death looks like for many people is, ‘How much time do I have left to do what I want to do?'” Weaver said.

Weaver said end of life experiences are very individualized and can differentiate based on age, circumstance and past experiences. She said what a peaceful death may look like to one person could be completely different to another because people have varying definitions of peace. She said she helps patients when they are distressed by helping them identify the root fear or emotion behind their concerns and then helping to address it in the way the patient would like.

“My role as a chaplain is to meet them where they are and go with them on their journey,” Weaver said.