Hektoen International

A Journal of Medical Humanities

Going boldly into the night: a reflection on “death with dignity”

Lenore M. Montanaro
North Kingstown, Rhode Island

 

 Anatomy of the Heart by Enrique Simonet, 1890, The Prado Museum, Madrid

Doctors should minimize one’s suffering at death and uphold the patient’s right to bodily integrity and self-determination. If someone with decisional capacity is diagnosed with a terminal illness such as Amyotrophic Lateral Sclerosis (“Lou Gehrig’s disease”), Alzheimer’s Disease, or Multiple Sclerosis, to list a few, especially if the diseases are slow-to-progress, then the stricken individual should be able to end his or her life to end the suffering caused by the disease, so that the person may “die with dignity.”

The title character of the Shakespearian play, Hamlet, states that “the readiness [of death] is all” that matters.1 This quote surmises a truth that no being can avoid: we must die. Yet, we do not know if anything exists beyond life. There are no answers2 for these questions.3 People must be comfortable with the known unknown.4 Edgar Allan Poe says that “The boundaries which divide Life from Death are at best shadowy and vague. Who shall say where the one ends, and where the other begins?”5 If neither the United States Supreme Court, nor the legislature, knows when life begins, then the government cannot possibly know when it ends for certain.6 “End of life laws in the United States do little to address this confusion.”7 What, therefore, is the responsibility of the medical and legal professions in defining death, and to what extent should the law allow Medically Assisted Dying to occur?

The speaker of the Dylan Thomas poem, “Do Not Go Gentle into That Good Night,” states that when faced with death, one should “rage against the dying of the light.”8 One should die with boldness, not quietly, but raging with passion and boldness against that which we ought to be ready.9 One could understand the poem to indicate that one should fight to live at all costs, that one’s raging10 should include a ‘“fight until the end.”’10, 11 This perspective is the default12 perspective, society’s erring ‘“on the side of life”’13 approach, which does not always adhere to the concept of non-maleficence, the ethical concept established by Hippocrates, that a physician should “do no harm.”14

There is another way to view the poem, “Do Not Go Gentle Into That Good Night” and our understanding of death and dying in general, and it requires a paradigm shift: rather than viewing one’s raging against the dying of the light as a fight to live, we may view the raging against the dying of the light as the approaching death face-to-face, owning and accepting all that is to come. Keeping in line with the Thomas poem, this new perspective calls us to not go gently but to go boldly. What is bolder than dying in a dignified manner, at one’s choosing? These are two perspectives, the gentle versus the bold, the former based in fear of death, and the latter in celebration of life and death.

 

I. Current Understanding

The language used to discuss the right to die “has become especially divisive over the past few years, and we must be careful how we use words that have become laden with political and philosophical meaning.”15 It is no longer accepted to describe Medically Assisted Dying as “Physician Assisted Suicide.”16 “Physician Assisted Death” is also outdated and generally used by those who oppose it.17 “Both “euthanasia” and “suicide” have negative connotations, and the people who use those terms generally oppose the propriety of the act.”18 Positive language in support of the right to die includes “Death with Dignity,” “Aid in Dying,” and “Medically Assisted Dying.”19

Oregon, Washington, Montana, California, and Vermont allow someone to die at one’s choice.20 Medically Assisted Dying occurs when the person who dies “performs the last act” whereas Voluntary Euthanasia is when a third party “performs the last act.”21

The Supreme Court held that a person has the right to refuse medical treatment.22, 23 Specifically, an adult with decisional capacity has the right to refuse treatment.24 The Court also held that there is no fundamental right to die.25 The Supreme Court held that there is no fundamental liberty interested protected by the 5thAmendment Due Process Clause to afford individuals the right to assistance in committing suicide.26 The right to assistance in taking one’s own life is not rooted in the historical traditions of justice under a substantive Due Process analysis.27

Bartling v. Superior Court held that “if the right to patient self-determination as to his own medical treatment means anything at all, it must be paramount to the interests of the patient’s hospital and doctors.”28 The Court held that the “right of a competent adult to refuse medical treatment is a constitutionally guaranteed right which must not be abridged.”29

If the government allows people on death row to die by lethal injection, then why not allow a person to self-administer a lethal injection through the principle of bodily autonomy?

 

II. Proposed Requirements

In order to receive help with Medically Assisted Dying, the patient must have: (1) full decisional capacity; (2) an incurable and irreversible physical disease; and (3) the ability to self-administer the lethal dose.

No patient who lacks decisional capacity should be able to employ Medically Assisted Dying. Oregon’s and Washington’s Death With Dignity laws “do not allow anyone to ‘coerce’ or use ‘undue influence’ to obtain a request” for Medically Assisted Dying and those who lack decisional capacity should be protected from their own possible confusion and/or misunderstanding of the intensity of Medically Assisted Dying.30 Those lacking decisional capacity include the developmentally disabled, minors, and the mentally ill. A surrogate decision-maker would be barred from making a decision on behalf of another.

For some, the “biggest concern is the fact that the opportunity to seek aid in dying is not available to more patients” because of the definition of terminal.31 The longer that a “person is expected to suffer, the more desperately that person needs the option of getting [the medicine to allow them to die].” In Oregon, the definition of “terminal” is “an incurable and irreversible disease that has been medically confirmed and will, within reasonable medical judgment, produce death within six months.”32 In states where Death With Dignity is legal, the “legislatures should remove the six-month requirement” for requesting the lethal medicine33 that the patient consumes to die.34

Under the principles of patient autonomy, non-maleficence, and beneficence, any patient who wishes to die should be able to do so provided that the patient has full decisional capacity, a redefined terminal and progressive disease, and the patient must administer the lethal dose herself. People should be given the choice to not go “gently,” but rather “boldly.”

 

III. Conclusions

Under the principles of patient autonomy, non-maleficence, and beneficence, any patient who wishes to die should be able to do so provided that the patient has full decisional capacity, a redefined terminal and progressive disease, and the patient must administer the lethal dose herself. People should be given the choice to not go “gently,” but rather “boldly.”

 

References

  1. William Shakespeare. Hamlet. Ed. Barbara A. Mowat and Paul Werstine. New York: Washington Square Press. 1992. Print.
  2. John Keats. “On Negative Capability.”Letter to George Keats and Tom Keats. 21 Dec. 1817. (describing the idea of Negative Capability as when someone is “is capable of being in uncertainties, Mysteries, doubts, without any irritable reaching after fact & reason”).
  3. Rainer Maria Rilke. Letters to a Young Poet. Trans. Joan M. Burnham.Ed. Keith Nerburn.New World Library, 2000. Print. (stating that one should “try to love the questions themselves as if they were locked rooms or books written in a very foreign language”).
  4. Barbara A. Noah, Edit, March, 2014.
  5. Edgar Allan Poe. “The Premature Burial.” Trans. Array. Edgar Allan Poe: The Complete Short Story Collection. Create Space Independent Publishing Platform, 2009. Print.
  6. Roe v. Wade, 410 U.S. 113, 708 (1973). (finding “one’s philosophy, one’s experiences, one’s exposure to the raw edges of human existence, one’s religious training, one’s attitudes toward life and family and their values, and the moral standards one establishes and seeks to observe, are all likely to influence and to color one’s thinking and conclusions about abortion.” Just as within the context of when life begins for abortion, one’s attitude toward death and dying may vary on a spectrum according to factors mentioned in Roe v. Wade).
  7. Barbara A. Noah, In Denial: The Role in Preparing for Death, 21 ELDER L.J. 1 (2013). (also finding that “no amount of legislation can serve to cajole or compel individuals to confront these issues”).
  8. Dylan Thomas. Do Not Go Gentle Into That Good Night. Poem.
  9. Id.
  10. Id.
  11. Barbara A. Noah, In Denial: The Role in Preparing for Death, 21 ELDER L.J. 1 (2013).
  12. Id.
  13. Id.
  14. Barbara A. Noah “Introduction to End of Life Law.” 9 Jan. 2014. Lecture.
  15. Barry Furrow, et al., Bioethics: Health Care Law and Ethics (7th ed.2013).
  16. Barbara A. Noah “Bioethics.” April. 2014. Lecture.
  17. Barry Furrow, et al., Bioethics: Health Care Law and Ethics (7th ed.2013).
  18. Id.
  19. Id.
  20. Id. (stating that a “doctor-prescribed” death is a legal medical treatment in Vermont and “Oregon, Washington, Montana, the Netherlands, Belgium and Luxembourg are the only jurisdictions in the world where laws specifically permit euthanasia” or assisted death).
  21. Rita L. Marker and Kathi Hamlon, Euthanasia and Assisted Suicide: Frequently Asked Questions. Patients Rights Council. Web. (2013).
  22. Cruzan v. Dir., Mo Dept. of Health, 497 U.S. 261 (1990).
  23. In re Quinlan, 335 A. 2d 647 (N.J. 1976).
  24. Bouvia v. Superior Court, 179 Cal.App.3d 1127, 225 Cal.Rptr. 297. (1986).
  25. Washingston v. Gluckberg, 521 U.S. 702 (1997).
  26. Id.
  27. Id.
  28. Bartling v. Superior Court, 163 Cal. App. 3d 186, 209 Cal.Rptr. 220 (1984).
  29. Id.
  30. Rita L. Marker and Kathi Hamlon, Euthanasia and Assisted Suicide: Frequently Asked Questions. Patients Rights Council.Web. (2013).
  31. Browne C. Lewis. A Graceful Exit: Redefining Terminal to Expand the Availability of Physician-Facilitated Suicide. Cleveland-Marshall College of Law. (2012).
  32. Death With Dignity Act, Or.Rev.Stat. §§ 127.800-.897. (1994).
  33. Browne C. Lewis. A Graceful Exit: Redefining Terminal to Expand the Availability of Physician-Facilitated Suicide. Cleveland-Marshall College of Law. (2012).
  34. “How to Die in Oregon.” Film.

 


 

LENORE MONTANARO is a law school graduate with pending admission to the bar. She received an English degree from the College of the Holy Cross in 2012. As an Andrew Mellon Foundation Fellow, she published a book of original poems about suffering titled The Morning within the Dark to benefit the John F. Montanaro III Memorial Foundation. John F. Montanaro III is her brother who died in 2011 from acute lymphoblastic leukemia. Lenore is herself a three-time survivor of Rhabdomyosarcoma, having lost her right leg above-the-knee in 2002 at Memorial Sloan-Kettering. Lenore aspires to become a health law attorney.

 

Spring 2016  |  Sections  |  End of Life

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