A bimonthly blog discussing controversial topics in the areas of end-of-life and palliative care. Everything is open to debate. Feel free to comment.
QUALIFIER: All views are my own or those who publish posts.
I am a palliative care provider who has been engaged in the palliative care movement for 27 years. I have watched in dismay, a specialty that was nurse formed and driven becoming increasingly medicalized, rather than the wholistic and gentle practice it was before it became “cool”.
A Story of Grace, Redemption and Remoralization
April 13, 2022
This Sunday is Easter. There is no better time to tell this story. It is a story of a patient our team cared for when I was director of a hospice. Easter is an appropriate time as this is the story of a young woman’s resurrection experience. This experience occurs during her stay on hospice before her untimely death.
Her experience is an illustration of Remoralization reached on her path to grace and redemption. I know all who read this blog are not Christian, Jewish, Muslim or even believers. Whatever one’s beliefs, this was “Jackie’s” experience. It moved everyone privileged enough to bear witness to her reformation. I share this story as it relates to my previous blog regarding Demoralization and Remoralization in the context of assisted death.
Jackie was a 22-year-old, Mexican American woman. She was a gang member, as was her boyfriend. Jackie and her two younger siblings had lived their lives shuffled from one relative to the next after their parents had divorced when Jackie was five years old. Jackie shared with us that she had never been in the same room with both of her parents after the divorce. She also shared that she had never heard either of her parents utter a kind word about the other since they separated.
Jackie came to us from the county hospital after being diagnosed with metastatic cervical cancer. She was understandably angry and bitter. She was consistently rude to her nurse, who was the kindest and most compassionate nurse I have ever known. Her name was Pat. Upon her first meeting with Pat when asked how she was feeling Jackie replied “I’m 22 and I’m dying. How the fuck do you think I feel lady?” When asked if the chaplain could come to see her, she responded “I don’t need that shit now”. Pat was steadfast and kind and was always open to listening. She offered that her feelings were warranted. Little by little Pat and Jackie built a therapeutic rapport and trust. Her symptoms were controlled.
Because Jackie was dying her boyfriend asked her to marry him. The date was selected, and preparations were made for a very modest ceremony as they were both from poor families. One week before the wedding Jackie’s boyfriend was arrested and she never saw him again. Pat did her best to console her. Pat also developed a rapport with Jackie’s support system, her aunt and cousin.
After a while, Pat asked Jackie “If you could have anything you wanted before you die what would it be?” Jackie said, “I would want my mom and dad to come here and stay with me to take care of me together.” Pat sighed heavily, recognizing the tremendous effort such a thing would require. Pat braced herself and asked again “Could I have the chaplain come and see you now?” Jackie acquiesced and Pat called our wonderful chaplain, Tracy.
Tracy came to see Jackie to discuss her wishes. Tracy visited the mother and then visited the father. Of course, this meant she had to endure the rantings and grievances from both parties about the other. She then visited them both again to broker a meeting. They met and a date was set for them to come and stay with Jackie for a while. We had a team meeting to discuss all our patient’s cases. When we asked Tracy how the meeting went, Tracy said, “Lord, now I know why people smoke and drink”.
After visiting with Tracy there was a shift in Jackie’s behavior and attitude. Thereafter, she wanted to start with prayer whenever anyone visited, which Jackie led. She was kinder and gracious. Her parents came and they took care of all of Jackie’s needs. They bathed her, changed her and fed her together. On the third day (believe me, the symbolism of that phrase is not lost on me) Jackie’s parents stood at the foot of the bed and asked one another for forgiveness. They wept as they held one another. Then they went to Jackie’s side and asked for her forgiveness. They promised her that they were going to do better and work to get along as a family and spend time with the other children. Then they left the apartment.
Upon Pat’s next visit she asked Jackie how the experience was for her. She answered “Now I can die, and it is okay. I did what I was supposed to do.” Within the week Jackie died. I was on weekend call when it happened and went to the apartment to “pronounce” her. Jackie was on a bed under the cover of white linen. She was in a white lace gown. Her hair was long and black, flowing over her shoulders. In her crossed hands her cousin had placed a single red rose. Her 21-year-old cousin told me “What happened here with Jackie was a miracle and it was beautiful.” It was indeed.
Had Jackie ended her life preemptively she would not have escaped her suffering. She would have died amidst her unresolved anguish. She found love, grace, forgiveness and meaning. That is the absolute most any one of us could ever hope for at the end of our lives.
Ethics of Assisted Death: Part I
This will be the first in a series of blogs regarding assisted dying. It is a much more complicated issue than can be discussed in 280 characters tweets. The issue goes far beyond the principle of autonomy and involves more than the individual purporting this said autonomy. This post will discuss the ethical principles and the laws which are relevant to assisted death.
Palliative sedation is the act of instituting complete or partial, continuous or intermittent sedation using a “cocktail” of intravenous medications with the intent of alleviating immediate, temporal suffering. After a period of sedation, it is lifted to evaluate the intervention. Should the patient continue to have symptoms, sedation is repeated. This is in contrast to continuous sedation (1). On the other hand, assisted dying is the provision, by physician prescription, of a lethal dose of medication prior to the onset of symptoms or suffering (cocktail) with the intention that the patient will self-administer the cocktail and end their life. Unfortunately, I searched my university library, google scholar, and google over the course of two hours and I was only able to locate one mention of clinical guidance of how to conduct assisted death. That was in a Medscape Continuing Medical Education course. The medications they recommended were set in a table without any references (2).
There are two ethical principles to discuss for each of these scenarios. For palliative sedation the ethical principle of “Double Effect” is often applied. The palliative clinician would argue that Double Effect is what justifies the use of palliative sedation because the intent is to manage symptoms or suffering, not to hasten death. The Right to Die advocate would claim that the use of this argument is a philosophical fig leaf to cloak a weak ethical argument (3). Rather, the principle of Double Effect and its requisite intent in the matter of palliative sedation is merely treating symptoms (physical or existential). I would argue that what assisted death treats is fear. That is, fear of the unknown, fear of the loss of control, fear of dying, fear of pain. Tertullian said of death “It is a poor thing to fear that which is inevitable.” What to do about this fear and how to treat it is a topic for another blog.
The important distinction between these two interventions is intent. Both require the action of a clinician to set into motion one of two things. The first is the alleviation of suffering which may or may not shorten someone’s life. The other is for the clinician to pen with his or her own hand, a prescription of a lethal medication, usually prior to the onset of suffering, with the knowledge that their patient intends to use the medication to end their own life at some point.
Intent is the basis of the ethical principle of Double Effect. That is the intent being pure of heart and the other the intent is to do harm. Then, the dilemma is “what is harm”? The principle of Double Effect is attributed by St. Thomas Aquinas (4). This principle is part of what is now known as normative ethics theory (5). Society owes all formal ethical thinking to Aquinas and other Catholic philosophers. It is important to remember that all law is not ethical or moral. This is not an argument of religious thought, rather it is an argument between normative ethicists/philosophical consequentialists and utilitarian ethicists/philosophical pragmatists. How do I know that the right to die advocates are utilitarian/pragmatists? One only needs to go as far as reading the title of the most famous book regarding assisted death: Final Exit: The practicalities of self-deliverance and assisted suicide for the dying(6). Before continuing, it is important to acknowledge that not all pragmatic or utilitarian decisions are maleficent.
The pragmatist argues that if the result of the action does not change the outcome or, in their own eyes, improves the outcome than the argument against the action is moot (7). Recall that in this post-positivist era, right is in the eye of the beholder according to the pragmatist or utilitarian. The utilitarian ethicist makes decisions based upon the most expedient and does not consider the individual (8, 9). These have been the guiding principles and arguments over a great deal of our history, dating back to Odysseus using verbiage to influence others to take less than noble action. Another would include the political writings of Machiavalli, who is probably the most famous utilitarian/pragmatist. Yet others include Eugenicists such as Margaret Sanger, George Bernard Shaw, and Woodrow Wilson to name just a few.
It was, in fact eugenics that led to the holocaust (10). During the holocaust, euthanasia was legal, and was not only used against the German Jewish population. Amongst those were at least 200,000 mentally ill, and physically challenged people who were murdered by euthanasia. Eugenics set the stage for these atrocities, which were defended as merciful acts (10). In fact, a Third Reich propaganda film called I Accuse was released featuring a woman who was terminally ill begging for her husband to end her suffering. I found that to be spine chilling when considering where we sit today (11) A very short film (less than 15 minutes) was recently released on Netflix called Forgive Us Our Trespasses which depicts a story of a young boy being targeted for is physical challenge. It is very much worth your 15 minutes.
Lyndon Baines Johnson was a utilitarian and pragmatist. After endorsing the War on Poverty and Civil Rights legislations he said something so vile and distasteful regarding his pragmatic purposes that I will not repeat it here. You can find it in a quick google search if you desire, but let your lunch settle first.
Jack Kevorkian was also a utilitarian and a pragmatist. An example of the difference between a normative ethicist and a pragmatist could be illustrated by the parable of the Good Samaritan, who was an example of a normative ethicist. The Good Samaritan finds a wounded, dying man in the street, he binds his wounds, gives him food and water and carries him to an Inn and provides for his lodging. Later, he returns to visit the man. Let’s imagine this same scenario and in place of the good Samaritan, put Jack Kevorkian in this role. Upon coming across the wounded man, the only question for our utilitarian pragmatist Jack would be “Should I suffocate him or hit him in the head with a rock”. Probably the rock would be his choice because a skillfully placed blow would render the wounded unconscious, whilst suffocation would cause more suffering for the wounded man and be more laborious for poor Jack. Ah, compassion in action. Unfortunately, during the days of the Good Samaritan, Jack would not have had access to his “Death Van” or his “Thanatron”.
My next post will continue this discussion with the addition of the principle of autonomy, amongst other things. In the meantime, be well and feel free to comment.
1. Cherny NI, Radbruch L, Care BotEAfP. European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care. . Pallilative Medicine. 2009;23(7):581-93.
2. Banerjee c. Medical Aid in Dying: Your Clinical Guide and Practice Points: Medscape; 2020 [Available from: https://www.medscape.org/viewarticle/940961.
3. Klein M. Assisted dying and the principle of double effect. Wiener klinische Wochenschrift. 2002;114(10-11):415-21.
4. Mangan JT. An historical analysis of the principle of double effect. Theological Studies. 1949;10(1):41-61.
5. Kagan S. The structure of normative ethics. Philosophical perspectives. 1992;6:223-42.
6. Humphry D. Final exit: The practicalities of self-deliverance and assisted suicide for the dying. Delta; 2002.
7. James W. Pragmatism: A New Name for Some Old Ways of Thinking: Harvard University Press; 1975.
8. Troyer J, editor. The Classical Utilitarians Bentham and Mill. Indianapolis/Cambridge: Hackett Publishing Company, Inc.; 2003.
9. Quinton A. Utilitarian Ethics: Springer; 1973.
10. Burleigh M. Death and Deliverance: “euthanasia” in Germany c. 1900-1945. New York, NY, USA: Cambridge University Press; 1994.
11. Maier FX. The Catholic Thing, 2022. https://www.thecatholicthing.org/2022/03/05/selling-murder/
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