A Dignified Death

By Max Fitzloff

On March 31, 2018, my uncle, Ryan Bolls, sat up in his bed and drank a cocktail of secobarbital that, within a few hours, ended his life.

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Drinking this cocktail was the final act in what had been a year-long battle against a disease that would inevitably take Ryan’s life. Close to a year before this day, my uncle was diagnosed with a glioblastoma, which is one of the most fatal cancers. The glioblastoma is a fast-growing tumor that is located in the brain. Leading up to his death, my uncle began to show early signs of dementia. With his condition worsening by the day, my uncle chose to use the Death with Dignity (DWD) law to end his life. My uncle’s choice to end his life still impresses me to this day; as a 17-year-old healthy teenager, I can’t even comprehend the amount of pain it would take for me to want to end my own life. I am thankful my uncle lived in one of six states that legally allows for Death with Dignity. Even though the law is controversial, I have personally witnessed it have an impact on one’s ability to control when and how they die.

Oregon voters approved Measure 16 or the Death with Dignity law on November 8, 1994, but it wasn’t until October 27, 1997, that the law was enacted and Oregon citizens could use it. Before Measure 16 was enacted, the Oregon district court put a restraining order on the law, and it wasn’t until February 27, 1997 after the Lee v. Oregon case that the injunction was lifted. With Measure 16 finally approved, terminally ill patients in Oregon could now end their own lives through self-administration of a lethal medicine (Blanke). Years before Measure 16 was ever being voted on in Oregon, there were doctors across the nation who were illegally assisting terminally ill patients in ending their lives. The most famous of these doctors was Dr. Jack Kevorkian. Kevorkian was known popularly as “Dr. Death,” but considered himself to be an “Angel of Mercy” (“Jack Kevorkian”). Kevorkian was a Michigan doctor who advocated for the option to kill oneself. Throughout the 1980s, Kevorkian worked to develop a suicide machine that would allow patients to have the power to end their own lives, and by 1989 Kevorkian had a working prototype. In 1989 a woman named Janet Adkins from Portland, Oregon, had been diagnosed with Alzheimer’s. She and her husband were members of the Hemlock Society, which advocated for the right to die. Desperate to find someone who could help her, Adkins learned about Kevorkian and soon after headed to Michigan to meet him. After confirming that Adkins did indeed have Alzheimer’s and making sure she still had her wits about her, Kevorkian proceeded to hook her up to his machine, and within 25 seconds she was unconscious (“Jack Kevorkian”). Within one minute her bloodstream was filled with potassium chloride, which stopped her heart, and before five minutes had passed, she had died.

After his first assisted death, Kevorkian was forbidden from using his suicide machine and received plenty of criticism for his actions from the medical community. At the time there were three main moral arguments coming from the medical community going against Dr. Kevorkian’s work. The first argument was that ending patients’ lives will erode the medical community’s morality as a profession. The second argument was that if legalized, a law about assisted suicide would inevitably be misused and the number of deaths from the law would skyrocket. The final argument referenced the Hippocratic Oath that all doctors take before entering the medical field, in particular the line, “I will give no deadly drug if asked, nor will I make a suggestion to its effect” (“Jack Kevorkian”).

Interestingly enough, some of the only people who were happy with his actions were the family of Janet Adkins, who claimed it was her right to make the choice and she was completely competent and able to do so. Throughout the 1990s Kevorkian claimed to have assisted over 130 people in ending their own lives. In 1999, Kevorkian was charged with second-degree murder after he pressed the button to end the life of Thomas Youk who suffered from Lou Gehrig’s disease and was unable to self-administer (“Jack Kevorkian”). Kevorkian did end up spending eight years in prison, but he also helped end the lives of patients who were suffering and had nowhere to turn. While Jack Kevorkian took his advocacy for Death with Dignity to extreme levels, he was one of the pioneers of the law and led the way to its legal status today.

Jack Kevorkian wasn’t the only doctor who advocated for the right to die before it was legalized. I got the opportunity to sit down with Dr. Mark Rarick, who worked in Oregon both before Measure 16 was implemented and after. Dr. Rarick is an enthusiastic, energetic man. He came to meet with me, coffee cup in hand, wearing a baseball cap, a T-shirt, and jeans. From the moment I shook hands with Dr. Rarick, it was evident that he was passionate about his profession and eager to share his knowledge with me. Dr. Rarick has had extensive medical training: he went to UCLA undergrad and USC Medical School for clinical medicine. He went into internal medicine at Ohio State and back to USC for hematology-oncology specialization. After working on staff at USC, Dr. Rarick migrated up to Portland and spent the rest of his career working at Kaiser Permanente. He is now retired and working for End of Life Choices Oregon.

Dr. Rarick told me multiple stories of what it was like caring for terminally ill patients before Measure 16. Two stories in particular painted a very grim picture. Dr. Rarick described how he “had one patient who actually shot himself because he had one of the skin cancers that patients with AIDS got.” The doctor then added, “He did that in his family’s home.” Rarick later explained sadly, “At that time if he had asked me and said hey would you help me, I would have had to tell him first of all no, and number two, I would have had to get a psychiatric assessment because at that time anyone that potentially wanted to kill themselves was considered to have a psychiatric disorder and they had to get a psych eval.” This first story was one of the predominant reasons Rarick become such an advocate for the law since it occurred early on in his career. Rarick told me, “The other thing that got me interested was a woman with breast cancer whose son came to me and said my mom has asked me to kill her and she wants to save up medicine, and I said, ‘Oh, you can’t tell me this, I can’t hear it,’ and the doctor had a significant ethical dilemma. She had metastatic breast cancer and every bone was involved and whenever she woke up she had pain so he essentially had to keep her sedated all the time and she said, ‘This is not life.’” After seeing the pain these diseases brought his patients, Rarick became an immediate advocate for Death with Dignity.

Patients similar to the two of Dr. Rarick’s would have likely given anything to meet with Dr. Kevorkian to find a safe, painless way to end their suffering. Before the law was passed in Oregon, death from a terminal illness could be a hell that the patient had no choice but to suffer through. For many people, it is too much and they find other, illegal ways to speed up the process. One of the main critiques of the law is that it breaks the fundamental patient/physician relationship through introducing medicine that will take a patient’s life. In an article in the National Catholic Reporter, Dr. George Delgado explains that the law does “damage to patients who are in very difficult situations. It does damage to the medical profession. It compromises the sacred trust between physician and patient, which should be based on healing, not based on killing” (Schmalz). I disagree with Dr. Delgado’s view that Death with Dignity damages the trust in the physician and patient relationship because he overlooks the deeper issue of patient wellbeing. In addition, Dr. Delgado does not take into account the fact that states that have legalized DWD have created a long list of rules that patients and doctors must follow in order to use the law.

Five years after Kevorkian performed the first “Assisted Suicide,” Measure 16 was passed, and a variety of steps had to be taken in order to use the law. First, terminally ill patients often hire a counselor who lays out all of the end-of-life options. I learned of End of Life Choices Oregon (EOLC) after researching what the first steps someone with a terminal illness should take living in Oregon. The EOLC website was helpful and gave information about all the members and how to get a consultation to begin the conversation about end-of-life options. I interviewed Sue Porter, the founding executive director at End of Life Choices Oregon. During the interview, Porter laid out for me step by step what it would look like for a patient to be able to use the Death with Dignity law. In order for a patient to qualify for the ability to use the Death With Dignity Law in Oregon, they have to be certified by two separate physicians to have a life expectancy of six months or lower. The patient must also be capable of communicating health decisions for themselves. The patient must be able to self-administer the lethal medication prescribed to them. Typically, the medication taken is an oral dosage of a barbiturate (pentobarbital or secobarbital). Pentobarbital comes in liquid form and one dose ranges in cost between $15,000-$25,000; secobarbital or Seconal comes in a powder/caplet formed and ranges from $3,000-$5,000 (Death with Dignity). Lastly, patients must also be Oregon residents, but there is a loophole—the law doesn’t specify how long one must be an Oregon resident in order to use it. In 2015, Brittany Maynard famously took advantage of this loophole and moved to Oregon from California to use DWD. Previously, Maynard had been diagnosed with terminal brain cancer (Galewitz).

While some terminally ill patients choose Death with Dignity, others choose alternatives if they don’t live in a legal state or have religious or moral issues with the law. The alternatives are still effective options at making the end of life as comfortable as possible. Most terminally ill patients will go on hospice care, which focuses on caring for a patient rather than curing a patient (National Hospice and Palliative Care Organization). Each patient who is in hospice has what is known as a hospice team composed of a personal physician, hospice physician, nurses, home health aides, social workers, clergy or other counselors, trained volunteers, and therapists. The team is meant to provide pain management as well as emotional support for the patient. Another plus side of hospice is that it’s covered by most private insurance plans, as well as Medicare and Medicaid, making it more widely available for terminally ill patients. VSED, or voluntarily stopping eating and drinking, is similar to Death with Dignity and is intended to result in the patient’s death. The point of VSED is to speed up a person’s death in order to reduce further pain the person would be facing from a disease. Many patients choose VSED since it isn’t a direct action to end their life like DWD; rather, it is passively ceasing from consuming any food or drink. Unlike Death with Dignity, VSED doesn’t require a doctor and isn’t limited to terminally ill patients (End of Life Choices Oregon).

My Aunt Emily and Uncle Ryan were happily married for 15 years and had two children together, Emmet and Eva. Within the previous two years before my uncle’s diagnosis, their daughter, Eva, had survived a hard fought battle against a severe cancerous brain tumor, and my aunt had a successful surgery to remove a breast tumor. So the fact that my uncle was diagnosed with a lethal glioblastoma left the family feeling cursed by the disease. But at least they knew how to deal with it. From the start my aunt supported Ryan with the way he wanted to navigate his cancer, whether it was going back to work for a while, or smaller things such as going out for a cup of coffee. All she wanted for him was to savour and enjoy his remaining time. I don’t believe the choice to use the Law was an easy choice for anyone, but I do know my uncle didn’t want to let the cancer take its full course which would have led to an excruciatingly painful death and an unimaginable burden on his family who had already been through so much.

I got a chance to speak with my aunt about the whole process. She described how a few months after my uncle received his terminal diagnosis, he and my Aunt Emily were sitting in the office of Dr. Charles Blanke, Ryan’s oncologist at OHSU, weighing each of the end-of-life options. Originally, Dr. Blanke was a bit unsure that Ryan would be able to use the law considering he was still mostly cognitive and still physically healthy. The first physician they had visited confirmed Blanke’s doubts and denied that Ryan had six months to live.

After feeling some frustrations towards the physicians, my aunt and uncle put the Death with Dignity idea on hold. Unfortunately soon after the first physician appointment, my uncle’s condition began to deteriorate very rapidly. While his physical condition was still very healthy, his mental and cognitive abilities had taken a hard hit from the cancer, and he was suffering from severe dementia. Finally, after another visit to a new physician, they got the approval that Ryan had under six months of life left. My Aunt Emily described that Ryan wanted out and knew it would only go downhill as time went on.

With the physician’s confirmation, Dr. Blanke requested one more home visit to make sure Ryan knew exactly what he was getting into and was still in the mental state to make the decision. To my aunt’s surprise, the meeting was successful and Ryan confirmed to Blanke that he did indeed want to end his life. This moment marked the beginning of the end for my uncle, an end that was wanted and needed. Blanke wrote the prescription right after the meeting and a date was set for the medicine to be taken.

On Saturday, March 31, 2018, my aunt woke up before my uncle, and when my uncle did eventually wake up, he had no recollection that today would be the day he died. My uncle even told my aunt that he was planning to grab coffee with a friend that morning, and when my aunt did remind him that today was the day, he sat back in bed and said, “Oh shit, that’s right,” and just like that, my uncle was ready.

At 9:00 am Dr. Blanke arrived at the house and prepared the medicine by mixing 100 caplets of powder into a glass of water. My aunt described the mixture as being thick and runny and she had her doubts that Ryan could actually drink the cocktail. After the family and kids got to say their final goodbyes, my uncle drank the mixture with no sign of regret. My aunt describes the moment as though he knew what he had to do and he was doing it for the sake of himself and his family to avoid the rocky road that could have been. After drinking the mixture, my uncle entered a coma within 20-30 minutes; however, he didn’t actually die until nearly 9-10 hours had passed. I can’t imagine what they day was like for my aunt and her family, and I definitely can’t imagine the strength it took for my two cousins ages 12 and 9 to go into their own father’s room and say one last goodbye before he ended his own life.

After going through the whole process and seeing firsthand the power of the law, my aunt is thankful for the opportunity to live in a state that has legalized Death with Dignity. She feels the law saved her from what could have been weeks or even months more of witnessing the struggle and pain in my uncle until the cancer would take him naturally. Just like anything, the law has its imperfections and has room for improvement, both on the legal and medical side.

My aunt describes the physician appointments as being one of the more difficult parts of the process and found that the doctors, in general, seemed to put their ego first when dealing with patients rather than doing what the patient wants. She felt as though the concept of “do no harm” in the end-of-life medical field can be taken too seriously, and that the patient’s well being should take first priority.

While the Death with Dignity law does a lot of good for the citizens of Oregon, it is still far from perfect and has a few flaws that should be improved in the next few years. Both Sue Porter and Dr. Rarick stressed that while they support the law, they do see ways it could be improved. Porter explained that while the whole purpose of her organization is to help people find the resources to use the DWD law, or get on hospice, or set up VSED, it’s still difficult for older people especially to find her organization to start with. Oregon Health and Sciences professor Dr. Charles Blanke described in his interview with OPB that, “Many times patients tell me it took four or five months to find me.” Now, when you consider the necessary components to use this law, many of the patients already have only six months to live, so they are spending most of their last time on earth searching for the right doctor. Dr. Mark Rarick brought up two ideas to improve the law. The first was to create medications patients can purchase that aren’t overly expensive, currently, the medicine costs upwards of four thousand dollars. The second idea Dr. Rarick had was to broaden the components necessary to use the law. Currently, if you have a terminal illness and have gotten the six month estimate, but you have recently shown signs of dementia, you cannot take the medication. The current necessary components of the law limit who can use it even if a person demonstrates most of the characteristics necessary. After hearing all of the critiques of the current state of Measure 16, I think in the future, the state government has a lot of work to do in order to perfect the law.  

Death with Dignity is a controversial law considered by many to be nothing more than assisted suicide. But I have seen first hand the impact it can have on someone’s life by giving them control over the circumstances of their death. I think that mattered to my uncle. He was a proud man who never wanted to be a burden. I am inspired by the courage my uncle demonstrated at the end of his life. The experience has shaped the way I view the importance of personal freedom. Even though I can’t imagine myself having the courage to end my own life, I am glad I live in a state where the choice is mine.

 

Works Cited

Allmark, Peter. “Death with Dignity.” Journal of Medical Ethics, vol. 28, no. 4, 2002, pp.

255-257. doi:http://dx.doi.org/10.1136/jme.28.4.255:

Blanke, Charles, Michael LeBlanc, Dawn Hershman, Lee Ellis, and Frank Meyskens.

“Characterizing 18 Years of the Death With Dignity Act in Oregon.” JAMA Oncol., vol. 3, no. 10, 2017, pp. 1403–1406. doi:10.1001/jamaoncol.2017.0243

Death with Dignity. Death with Dignity. https://www.deathwithdignity.org/faqs. Accessed 5 Apr.

2019.

End of Life Choices Oregon. eolcoregon.org. Accessed 17 Apr. 2019.

Fitzloff, Mark. Reader. May 22nd.

Galewitz, Phil. “Post Brittany Maynard, Aid in Dying Advocates Look Toward States Beyond

California.” The Oregonian, 30 Nov. 2015. https://www.oregonlive.com/health/2015/11/physician_assisted_suicide.html

“Jack Kevorkian.” Newsmakers, Gale, 1991. Biography In Context,

http://link.galegroup.com/apps/doc/K1618001015/BIC?u=port26256&sid=BIC&xid=66934a12. Accessed 16 Apr. 2019.

National Hospice and Palliative Care Organization. National Hospice and Palliative Care

Organization. 20 Feb. 2019, http://www.nhpco.org/about/hospice-care. Accessed 21 Apr. 2019.

Porter, Sue. Personal Interview. 25 March. 2019.

Rarick, Mark. Personal interview. 1 Apr. 2019.

Richardson, Peter, dir. and prod. How to Die in Oregon. 2011.

Strudwick, Laura. Tutor. Portland, OR.

Schmalz, Valerie. Judge OKs court challenge to California’s assisted suicide

law. National Catholic Reporter, 17 June 2017, http://www.ncronline.org/news/

     politics/judge-oks-court-challenge-californias-assisted-suicide-law.

     Accessed 23 May 2019.

 

Works Consulted

Blanke, Charles. Personal interview. 25 February. 2019.

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