By Elise Kuechle
A Second Simplicity
The first time I completely contemplated my own mortality was October 6, 2015 at 8:35 am. At 9:20 pm on October 5, 2015, my friend died of Alveolar Soft Part Sarcoma. Her name was Nathalie Traller. She was 16 years old when she died.
Throughout her illness, I stayed informed of her condition through a blog her father wrote, detailing her fight to find pediatric clinical trials, her numerous surgeries, and her pain. But more important than her struggles was her incredible strength; she was an advocate, a role model, and ultimately, a person who did not deserve her death.
I heard of her passing during English class on a bleak Tuesday morning, and in that moment, I began to think about death. As a culture, Americans don’t dwell on mortality, and so this topic was new to me. I had questions that needed answers, things I had never even imagined before. End of life care and decisions are something not many teenagers contemplate, but after Nathalie’s death, these questions and more surfaced in my consciousness. I went to a candlelight vigil for her the night after she died, and my question deepened: what is a good death?
What defines a good death depends on the person: their upbringing, religion, and experiences. This question has even been debated in court, in the form of Death with Dignity laws. Death with Dignity is a state law that allows people who are legally adults with a terminal illness diagnosis to end their life by ingesting a lethal medication prescribed by their doctor (“Frequently Asked Questions”). The law was first passed in Oregon in 1994, and since then, 1,327 Oregon citizens have exercised their right to die peacefully and on their own terms (“Frequently Asked Questions”) Since 1994, DWD laws have been fully passed in two other states: Washington and Vermont. California passed the End of Life Option Act earlier this year, but it has not yet gone into effect (“Death with Dignity Acts”). Judges in New Mexico have also authorized the use of DWD in some cases (DeBonis). Montana is the last state to have considered end of life legislature, but does not currently have any Death with Dignity laws in place. In 2009, Montana’s supreme court ruled that there was nothing in state law prohibiting physicians from honoring a terminally ill, mentally sound patient’s wish to die a peaceful death. To date, no other states have passed Death with Dignity laws (“Death with Dignity Acts”).
Throughout human existence, every society has developed their own way of dealing with death. The Egyptians believed in a life after death, called the Field of Reeds, which mirrored life on Earth (Mark). Ancient funeral rites were practiced as early as 4000 BCE to ensure that a person’s soul reached the afterlife (Mark). Around the same time, in ancient Mesopotamia, death was regarded very differently. It was believed that humans were made of clay mixed with the blood of a sacrificed god, and when the body died, the spirit continued to live in a world of shadow and despair, eating only dust and clay, unable to drink water (“Death in Ancient Civilization”). The only lull in their dismal existence was when they ate the food their families offered in remembrance of them. Because this unhappy future awaited all souls, regardless of how they had lived their lives, not much tradition or prestige surrounded burial. It was feared, however, that the dead could rise up and haunt their relatives if not given a proper entombment, so care was given to ensure this could not happen (“Death in Ancient Civilization”). Although these beliefs come from ancient times, they can often still be observed today, in the form of modern funeral rites and burial rituals.
Contemporary religions have many opinions surrounding death, and these views can affect secular society’s attitude toward death. Christianity, Catholicism, Greek Orthodox, Judaism, and many other religions view death as a separation of the soul and body, after which the soul goes on to be with God or another higher being in some way (“An Outline of Cultural”). Catholicism and Christianity allow both cremation and traditional burial, but in both cases a special prayer service is conducted to pray for the deceased (“An Outline of Cultural”). Greek Orthodox and Judaism only allow traditional burial, and in both religions, a candle is lit for the dead in honor of the soul (“An Outline of Cultural”).
Buddhism, Hinduism, and Scientology, as well as others religions, believe in reincarnation. Buddhism and Scientology allow both cremation and burial, accompanied by prayers and chants for the former, and quiet ceremony with close family for the latter (“An Outline of Cultural”). Hinduism only permits cremation, because it is believed that the flames represent Brahma, the creator (“An Outline of Cultural”). However, what ties all these religions together is the agreement that there is something after death, a natural companion to life.
As inherent as life is to death, many Americans make the choice, consciously or unconsciously, not to dwell on their own mortality. Centuries old traditions that come from both secular cultural progression as well as religious practice have manifested themselves in current thought about death. The end of life is feared largely because death represents the unknown, and throughout existence, humans have sought to explain the afterlife with little luck. According to Pew Research Center’s 2013 study about American opinions on death, 27% of people say that they have not given much thought to their end of life preferences, and 25% of senior citizens say the same. However, the majority of Americans say death has affected them in some way during their life (Hafiz).
There are many reasons why people choose to ignore death, but one of the most accepted is called the terror-management theory, or TMT. Terror-management theory is the psychological conflict that emerges from a desire to live, combined with the constant knowledge that someday, you will die (Beck). According to TMT, the only way to cope with this uniquely human knowledge is with the thought of either real or symbolic immortality (Beck). Real immortality often takes the form of religious belief, while symbolic immortality is the belief that you will be remembered long after you have died. As long as a person has the hope of immortality in some form, it is possible for them to manage their fear of death (Beck).
The practice of Death with Dignity corresponds with the opposite of TMT. One of the most frequently cited reasons for using Death with Dignity is the ability to control the circumstances surrounding death and the desire to meet the end of one’s life without fear (Smith). In order to achieve this, a great deal of thought and planning around death must occur. One of the requirements for using Death with Dignity is that the patient must make three requests to their physician for the prescription, two oral and one written (“How to Access Death”). During the process, the patient must also undergo two waiting periods before they can get the medication and once they have obtained the prescription, there is no requirement to use it (“How to Access Death”).
The ethics surrounding Death with Dignity have been debated for decades. The issue often comes under the same scrutiny as abortion or same sex marriage, and brings up the question of just how much the government can control an individual’s personal decisions (Ball). While the U.S Constitution’s “Due Process” clause protects a person’s choices from government interference, it does not apply to decisions that are considered illegal, which is where the debate arises (Ball). Some opponents of DWD have raised the concern that the law may lead down a slippery slope to euthanasia, meaning that if a law is passed legalizing physician assisted suicide, it may cause an escalation of use that is not in the best interest of the patient (Benatar). However, in the 18 years since its legalization in Oregon, no such situation has been reported, leading many to question the validity of the argument.
One of the most broadcasted instances of DWD is the Brittany Maynard case. Maynard was diagnosed with terminal brain cancer at the age of 29, less than a year after being married (Maynard). Her struggle was highly publicised because of her youth, and her decision to uproot her life and treatment to Oregon to access her right to die was very controversial. However, her reasons for pursuing DWD speak to one of the most common rationale for others who choose to use the law. In an article for CNN, Maynard stated “I probably would have suffered in hospice care for weeks or even months. And my family would have had to watch that. I did not want this nightmare scenario for my family, so I started researching death with dignity (Maynard).” Although Death with Dignity completely rejects any hopes of real immortality, it can often lead to a new hope: a good death, which is exactly what Maynard and others with a terminal illness desire.
I drove from OES to Legacy Hopewell House to meet Eric Smith, the chaplain of the hospice, to investigate the more personal side of Death with Dignity laws. Located in the Hillsdale neighborhood of Portland, the turn off Capitol Highway into the hospice’s driveway is easy to miss. A narrow, one way road winds through a dense, dark forest and finally ends in a sparse parking lot in front of the house. Surrounded thickly on every side by trees, the hospice is a bubble of light in an otherwise sunless area. I arrived early to the hospice and spent a few minutes standing in the pools of stain-glassed light reflected on the worn wooden floors. The strong smell of antiseptic coated the air, but something else, something older and more antique undermined the clinical scent. Wooden crosses hung on the walls and from where I stood in the middle of the lobby I could see at least three Bibles, but the space was more than its religious overtones. It felt like a hospital, but in the least obtrusive way possible, as though whoever designed it wanted the observer to forget where they were, and why they were there.
When Mr. Smith arrived, he gave me a friendly handshake and offered me a tour of the hospice. Smith is tall, at least 6’ 3” and had to stoop to pass through the doorways. His open face and easy smile somewhat surprised me, but I was grateful for his outgoingness. Born and raised in Southern California, Smith moved to Portland 30 years ago. He had worked as a pastor in the Portland area for three decades, but a desire to help people more personally and acutely prompted a switch to hospice ministry at Hopewell House four years ago (Smith). Smith is obviously well liked, and he stopped to say hello to the nurses as he showed me the common area between the thirteen patient rooms at Hopewell House. It was a small space, all light pastels and comfy furniture. After the short tour, we sat down in a sunlit conference room and began our conversation about one of the most avoided topics in America: death.
An ordained Episcopalian, Lutheran, and Methodist priest, Smith deals with the pain doctors cannot: spiritual suffering. “Death and dying is an amazingly spiritual environment. Not necessarily religious, but spiritual. I believe whatever we’re connected to outside of ourself is our spiritual connection (Smith).” According to Smith, spiritual connections are one of the four basic things that a human needs in order to feel content. The other three are hope, peace, and purpose. Death with Dignity can contribute to attaining these pillars in a variety of ways. Smith believes that a decision to pursue DWD can open up a new conversation with others about dying, and that this new pathway can lead to a better connection to others. Hope is the second pillar. Smith remarked earnestly, “[Death with Dignity] is not the hope of getting better, but it’s a new hope and it’s a very realistic hope and it gives them purpose.” Peace is the third pillar. Being able to control the circumstances around one’s own death and the awareness that there is an option if a person’s quality of life declines to a certain point can bring an incredible amount of peace (Smith). According to Smith, the final pillar of happiness is purpose. The knowledge that a person will no longer be a burden to their families drives many people to pursue DWD and gives them a new purpose: not to live longer, but to die well (Smith). “[Death with Dignity] is an awareness, an education, that says it’s okay, it’s legal for us not to go to 1,000 doctor appointments til we die. It is legal, it is good, and even preferred to start thinking, I’m going to start working on the quality of my life, rather than the quantity (Smith).”
Smith is for Death with Dignity, even with his religious background. One of the largest arguments against DWD is the religious one. Although religions all view the law in a unique way, some of the largest opponents of Death with Dignity are the Catholic, Jewish and Christian faiths (DeBonis). Many times the Bible cites God’s plan for his disciples, and the Catholic church’s official position on DWD states that “scripture, in fact, clearly excludes every form of the kind of self-determination of human existence,” (“Religion and Spirituality”). In short, to choose the end of one’s own life is to reject God. The other major religious argument against Death with Dignity comes from the sixth commandment, “thou shalt not kill.” The Catholic church often incorrectly labels Death with Dignity as euthanasia and according to the Vatican’s catechism, “intentional euthanasia, whatever its forms or motives, is murder. It is gravely contrary to the dignity of the human person and to the respect due to the living God, his Creator (The Ten Commandments).”
However, Smith argues against these views with the simple idea that God is a god of forgiveness. He remarked openly, “If somebody had a religious conviction, it would be hard to convince them [to support DWD] unless I came out with other scriptures that said God is love, God is compassion, full of love and kindness and mercy.”
The process of dying is incredibly complex and DWD often complicates matters more. However, at its core, the law is just another option for attaining a good death. Smith said sincerely, “life starts out simple, and then it gets complicated, then it returns to a second simplicity….It’s simple acts of kindness. A glass of water, a smile, a visit from a friend. Those things mean everything in the world to folks who have returned to a second simplicity.” For many, Death with Dignity represents an opportunity to return to a place of simplicity in a time of confusion and fear, and it is for this reason that people seek out their right to die on their own terms (Smith).
“Strength and dignity are her clothing, and she smiles at the future.” (Proverbs 31:25)
I attended Nathalie’s memorial on November 5, 2015 at 4:00 pm. There was prayer, music, and many memories of Nathalie. Her father, Nathan, was the last to speak. He stood on the stage before the three hundred people gathered, his shoulders caved slightly inward, his face sunken. Every speaker before him had spoken of Nathalie’s bravery, determination, her selflessness, but her father addressed something new: fear. He remembered Nathalie as a dragonslayer, fighting the dragon not of cancer, but of fear. The fear of pain, uncertainty, and of death. The reason Nathalie was so brave, determined, and selfless was because she fought the dragon of fear every day. Sometimes she won, other times she lost, but the fear was always there, all the time.
That afternoon, as I sat in quiet contemplation about my friend and her life, I was able to answer some of the questions that had been plaguing my mind since her death. Death is an integral part of life, and in order to come to terms with the knowledge that someday our personal existence will end, we must learn to make the most of the time we have with those we love. For people with a terminal illness, Death with Dignity legislation is an important part of achieving this, and in order for people to have as good a death as they did life, the compassionate choice must always be an option. Death with Dignity is a way for those eligible to fight their own fear dragons, and win.
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