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Euthanasia and Physician-Assisted
Suicide: the Courage and the Right to
Decide When to Die
“If I commit suicide, it will not be to destroy myself but to put myself back togetheragain. Suicide will be for me only one means of violently reconquering myself, of brutally invading my being, of anticipating the unpredictable approaches of God. Bysuicide, I reintroduce my design in nature, I shall for the first time give things the shape of my will.” By Antonin Artaud
Introduction
Antonin Artaud was a poet, actor and French dramatist, who suffered from lifelong clinical depression and anal cancer. As I was reading this quote, I could imagine his pain and desire to shape a life of his will, which would be healthier and happier. The debates about euthanasia and physician assisted suicide have been in the forefront of public and political arenas for centuries, and are still being viewed today as moral and ethical issues. The guides to the art of dying were popular in the medieval time, and during that time, “people believed that death should be accepted stoically, without fear or self-pity or hope for anything more than the forgiveness of God” (Gawande, 156). As Barry Rosenfeld (2004) posed the question: “Do we have the right to decide when and how to die?” I believe that it should be the patient’s right to decide.
Definition of Euthanasia from its Greek Roots
Euthanasia comes from the Greek words, Eu (good) and Thanatosis (death) and means "Good Death, "Gentle and Easy Death." Interestingly, W. Bruce Fye explained that “Greek and Roman philosophers used the term euthanasia to refer to a pleasant state of mind at the time of one’s death, with no reference to the speed or timing of death per se” quoted by Rosenfeld in Assisted Interface of Social Science (p.492). Hence, euthanasia inferred a peaceful death. According to Darrel W. Amundsen (1978), Greek and Roman philosophers accepted assisted death in the face of illness during their time because physical fitness was considered “an ideal, indeed the highest good, set above beauty, wealth, and inner mobility” (p.24). Physical health was highly regarded, and even reflected in the Hippocratic Corpus: “nothing avails, not money or any other thing without health” (p.24). As a human being, one strives for good health during his or her passage on earth. But when one loses his or her autonomy and quality of life, euthanasia or physician-assisted suicide can be the escape from the unbearable pain and shame that medication cannot take away. In many instances, some patients may never recover, so having the courage and the right to decide may be the only answer for some terminally ill patients.
Euthanasia
Lars Johan Matersvedt (2003) defines euthanasia “as the administration of a medication or other toxic substance typically but not necessarily by a physician, with the specific intent of causing the death of the individual” (p.97). According to Rosenfeld, euthanasia is different from intent to murder an individual. Likewise, in New York, a family member can initiate non-voluntary euthanasia on behalf of the patient who is comatose (Opinion E-8.081 Surrogate Decision Making, AMA policy). When a patient is on life support, end-of-life measures are legal; however, euthanasia and physician-assisted suicide should be allowed as well. The only difference is that the patient has the autonomy to make the decision in euthanasia and physician-assisted suicide. In 1987, the first argument regarding the right to die was heard in the US Supreme Court. In the case of Cruzan v. Director, Missouri Department of Health, Nancy Cruzan, 25 years old, had been in an automobile accident in January 1983, and suffered irreversible permanent brain damage. She was on life support for 4 years until her parents became her legal guardians in
- In December 1990, the Cruzans’ request was granted “after hearing new clear and convincing evidence about Nancy’s wishes, the court again ruled in favor of the Cruzans”(2004, p.31). Nancy Cruzan died 12 days
later. This is the first case that “the U.S. Supreme Court granted certiorari, agreeing for the first time to hear arguments regarding the “right to die”” (p.32). Hopefully, the Supreme Court will be willing to hear more cases from terminally ill patients or their legal guardians. The hope would be for the courts to see the patient’s point of view, because the disease is already killing them.
Physician-Assisted Suicide
On the other hand, when it comes to physician-assisted suicide, the patient requests a physician to administer or prescribe a lethal injection so they may die. It should be noted that, one famous retired pathologist by the name of Jack Kevorkian was convicted of second degree murder for assisting in the administration of a lethal substance to a patient. Dr. Kevorkian’s action was the catalyst that put euthanasia and physician- assisted suicide into public awareness. But yet, other types of end-of-life interventions such as withdrawal of live support (mechanical ventilation), and refusal of artificial nutrition and hydration, and treatments are legal in the USA and less controversial in our society. Because the patient is on life support, our society feels that it is the last resort to let the patient expire.
End-of-life Case
competent persons who are in the final stages of fatal illness and wish to hasten their death...” (p. 724 ) Patients on life support are treated differently than terminally ill patients. This type of discrimination was successfully argued and while the appellate court agreed that it was unlawful, the victory was short lived. The U.S. Supreme Court overturned their decision in January 1997. It is time for all terminally ill patients to be treated equally. They should have the option to choose between euthanasia and physician-assisted suicide if they so desire and meet the established criteria.
Amyotrophic Lateral Sclerosis (ALS)
Neurological diseases and their debilitating symptoms might make a patient seek euthanasia or physician-assisted suicide. One of the neurological diseases that deprive patients of their quality of life and autonomy is Amyotrophic Lateral Sclerosis (ALS), commonly called, Lou Gehrig’s disease. Discovered by French Neurologist Jean-Martin Charcot in 1869, ALS received national and international attention in 1939 when Lou Gehrig the famous baseball player was diagnosed with it. ALS is a progressive neurodegenerative illness that affects nerve cells in the brain and the spinal cord that strikes people between the age of 40 and 70. As the disease progresses, it prevents the brain’s control over muscle movement
and eventually leads to paralysis. There is no cure at the moment, and only one drug on the market, Riluzole. Also, the progression is patient specific. It is reported that 5,600 people are diagnosed yearly, and the life expectancy once diagnosed is 2-5 years (Amyotrophic Lateral Sclerosis Foundation). Once the autonomy and the quality of life diminish, the patient is emotionally distorted. This might lead some patients to request the choice of euthanasia. In the case of ALS, one thing that is for sure is that paralysis is inevitable. There is only one medication for the disease and a multidisciplinary approach to managing the symptoms by utilizing occupational and physical therapists, speech therapists, nutritionists, and nurse specialists that have led to an improved quality of life and maximization of function in the person living with ALS (ALS Foundation). There are some clinical trials in experimentation but no cure on the horizon as of yet.
that only “5% of patients with this condition survive for more than a decade after being diagnosed.” (BBC News, 2013). We are not sure of the contributing factors to his longevity with ALS. This is an unusual and the only known case. While Hawking is a victim of this terminal illness, he still believes that patients should have the right to decide to end their life. As long there are “safeguards that the person concerned genuinely wants to end their life and are not being pressurized into it or have it done without their knowledge and consent as would have been the case with me" (Reuters, 2013). Hawking had pneumonia and was on life support during that hospitalization. However, his wife did not authorize the removal of the mechanical ventilator, because he did not complete the Advance Directive form prior to performing the procedure. This document allows a patient the opportunity to make provisions for healthcare decisions in the event that in the future, he or she becomes comatose or on life-support. This consent form is very important and should be discussed with patient at length. It alleviates the burden on a family member to make the decision for the patient, but if the opportunity arises, the family member must ensure that the patient’s wish is fulfilled.
Discrimination Among Terminally Ill Patients
The discrimination is profound among terminally ill patients with life- support versus those with no life-support. Life-support consists of techniques used to maintain a patient alive after one or more organs failure. Interestingly, the law allows a physician to make the decision to end the life of a patient on life-support. Hawking sees denying terminally ill patients the right to decide their own demise as “a form of discrimination” (Klett, 2014).
Parkinson’s Disease
Parkinson’s disease is a progressive disorder of the nervous system that affects patients’ movement. The neuron cells die and cause tremors, stiffness or slowing of movements. This is an incurable disease and medications only improve the symptoms. 600,000 people are diagnosed yearly, and one million live with the disease. The cost to treat PD yearly is $25 billion (Parkinson Disease Foundation). This disease is very costly to insurance companies, especially at the end stage of the disease. I wanted to see how PD affects patients, so I had the pleasure of interviewing a Social Worker and a PD patient.
mechanisms to deal with their daily activities. PD patients have a normal life span. With the uncertainty and ambiguity of the disease, anxiety is inevitable. Some patients do express their wish to die, but never pursue further, because of counseling and treatment available to alleviate their symptoms. With all these treatments available to PD patients, physician- assisted suicide may not be an option for them. Lately, Legross has noticed that more patients have their wills in order, but their final days are not discussed with family members. Legross counsels the caregivers as well, who is most often the spouse, significant other or a close relative. There are a few support organizations available to the patients and the caregivers. When a patient is near death, the caregiver expresses to Legross that she or he is afraid of the loneliness that will set in when the patient passes away, because all the support will be gone. Legross informed me that support is available to the caregiver after the patient’s death. Parkinson’s disease is not curable, but patients have access to numerous medications and different types of surgical treatment. A surgical procedure called Deep Brain Stimulation (DBS) is used to treat a variety of disabling neurological symptoms such as tremor, rigidity, stiffness, walking problems, slowed movement and essential tremor. This procedure blocks the electrical signals from targeting areas in the brain. DBS is now the preferred surgical
procedure for PD patients. However, it is important for physicians and social workers to address their depression closely, so they can live a somewhat normal life. For PD patients, if their depression is managed they may not seek euthanasia or physician-assisted suicide right away. This decision
cannot be made while the patient is depressed. This dialogue must be
discussed early in the prognosis, before the patient loses their
cognitive and communication skills. This is a big decision, and it
is imperative that the physician ensures that the patient is mentally
sound.
Interview with PD Patient
I had an opportunity to interview a PD patient, who was diagnosed with this disease in 1994 at the age of 36. For the purpose of this paper, I’ll call her Joanne Midi. Midi developed a tremor in her left hand and stiffness in her left shoulder. It has progressed to where her whole body is stiff, which makes movement very difficult and walking has become an issue. Midi explained that she has severe depression and it has been a struggle for her to cope with the disease. She is on anti-depressant and sees a psychotherapist two to four times a month. She was just diagnosed with dysphasia a few months ago. Unfortunately, she had to move in with her parents, because
be at least 45 years old (The Guardian). Because of the cognitive and communication impairments associated with Alzheimer’s, euthanasia has to be legalized in order to relieve family members or friends from prosecution. Sir Pratchett eloquently stated: “….because if I knew that I could die at any time I wanted, then suddenly every day would be as - precious as a million pounds. If I knew that I could die, I would live. My life, my death, my
choice” (The Guardian). Many terminally ill patients with Alzheimer’s
desperately want to make the choice to die in control, which will make them appreciate life more. As many of them feel, they don’t want to die but the disease is taking over their frail bodies and is killing them.
Fact on Alzheimer’s disease
Most patients affected by Alzheimer’s disease are 65 years old and over, but there is a small percentage that are in their 40’s and 50’s. Currently five million people are diagnosed in the USA. This disease has a huge burden on caregivers because of the constant supervision Alzheimer’s patients require. It is reported that caregivers neglect their own health while looking after their patients (Alzheimer's Association). These hard facts must be taken into consideration; that’s the only way our society will come to the conclusion that some terminally ill patients should have the right to decide to die.
Unfortunately, the survival rate for Alzheimer’s and dementia is between 4-9 years for most patients, and physicians struggle to consider these two diseases as terminal illnesses, because they can’t predict how long AD patients will live once diagnosed. That’s the reason for the low enrollment in hospice care, because the guidelines dictate that the prognosis must be six months before death (Sachs, 2004, p.1057). Also, treating dementia patients in hospice care is a true challenge for everyone there due to the declining cognitive and communication skills. Thus, to assess their pain level a new approach is required, such as a “physical exam including observation for nonverbal indicators of pain and an openness to empirical trials of analgesics when pain is suspected” (Sachs, 2004, p.1059). Surveys reveal that the cost for hospice care for patients with Alzheimer’s is higher in comparison to patient without Alzheimer’s (Alzheimer’s Association). Although Alzheimer’s itself does not cause pain, patients afflicted with it can also suffer from arthritis, osteoporosis and peripheral Neuropathy to name a few. Caring for patient with Alzheimer’s appears to be burdensome, a caregiver who is related to the patient is more likely to die the following year due to stress (Alzheimer’s foundation). A Social Worker’s guidance would be a plus because he supports the caregivers in the realm of Bereavement and other areas are greatly needed. Because of the way
AD Patient Interview
In early September, 2014, my father was diagnosed with early onset Alzheimer’s disease. Although we had our suspicions, nevertheless, hearing his physician say the word was heartbreaking. For the past ten years, he felt that his memory was not as sharp as before. My dad had an appetite for reading, but lately, he could not follow the plot or forgot what he just read. To cope with his memory flaws, he decided to do crossword puzzles. For the purpose of this paper, I decided to interview my dad and will call him Philippe LaBoheme. LaBoheme had his suspicions about his subtle episodes, but he hoped that he was wrong. He was seventy-seven years old, and did not know much about AD, besides the fact that it affected one’s memory and had some cognitive and behavioral challenges. LaBoheme was prescribed two medications that will slow down the progression of AD. As there is no cure yet, LaBoheme is sure that he will not see a cure in his lifetime. He has not had any discussion with his physician about end-of-life, but has done so with his wife. He explained to her that we all have to die one day, but how we die makes a difference. “My hope is to not be a burden on my family and to die with dignity”.
Research
“Stem cell research is the key to developing cures for degenerative conditions like Parkinson's and motor neuron disease from which I and many others suffer. The fact that the cells may come from embryos is not an objection, because the embryos are going to die anyway.” By Stephen Hawking Scientists are diligently researching, and there may be light at the end of the tunnel for Alzheimer’s patients. In a recent article published on September 22, 2014, on NYULMC website and in Stem Cells Reports talked about how stem cells may be able to regenerate those dead cells in Alzheimer’s patients by using a technique that Dr. Stadtfeld and his team developed. Dr. Stadtfeld said, “This big boost in efficiency gives us an opportunity now to study stem cell programming mechanisms at high resolution” (NYULMC website). Matthias Stadtfeld, PhD, is an Assistant Professor of cell biology and a member of the Skirball Institute of Biomolecular Medicine and the Helen L. and Martin S. Kimmel Center for Stem Cell Biology at NYU Langone Medical Center. According to Dr. Stadtfeld’s colleague Dr. Ruth Lehmann, “this is a very exciting advance. The new technology developed by the Stadtfeld lab to reprogram differentiated cells efficiently and effectively brings the prospect of stem cell technology for safe use in regenerative medicine ever so much closer” (NYULMC website). The number of patients diagnosed with Alzheimer’s is
