On March 28, 2017, the South Carolina House passed H3487 with little debate and only one dissenting vote. H3487 defines and expands how emergency medical personnel should interact with do-not-resuscitate (DNR) orders for minors. It also fundamentally changes both the spirit and letter of past advanced care directive legislation that until now excluded children from DNR orders. The bill specifically defines a child as anyone under age 18 and gives parents or guardians the right to issue DNR orders for that child if he is terminally ill.
Advanced directives regarding patients end of life healthcare have been controversial since the late 1960’s when they were first proposed by the Euthanasia Society of America. Luis Kutner, the attorney for ESA who developed the first advance directive or “living will” proposed that since “a patient cannot be subjected to treatment without his consent,” he should have the right to formalize his wishes for health treatment or lack thereof should he become incapacitated.
Kutner’s “living will” legislation was debated state by state for the next twenty years. By 1986, forty-one states had adopted some type of advanced directive including South Carolina. Named the Death With Dignity Act, our law defines how advanced directives should be structured and when life-sustaining measures should be withheld. The General Assembly went on to pass the Adult Health Care Consent Act in 1990 and the Emergency Services Non-Resuscitation Order act in 1994. None of the bills applied to children and with good reason.
Terminally ill children are ethically unique as noted by Daniel S. Goldberg in his 2007 study The Ethics of DNR Orders As To Neonatal & Pediatric Patients: The Ethical Dimension of Communication. Several points in his study caught my eye in relation to H3487 allowing parents to issue DNR orders.
Goldberg notes that the last days, hours and minutes of a child’s life will stay in the parent’s memories forever. These memories will have a major impact on the future emotional health of those parents. His study shows a significant discrepancy between the physician’s prognosis and the parents understanding of what that prognosis truly means.
Parents are not doctors or emergency medical personnel. Parents are emotionally bound to the child and are not going to be rational during an emergency when DNR order questions will be raised.
After discussing the bill with it sponsors, I understand that the bill was offered with good intentions. However, given the complexity of medical procedures these days and the significance of any error made regarding a child’s DNR order, I encourage the Senate to dig for the unintended consequences that this H3487 will inflict.
Appendix – SC Code Cites
SECTION 44-77-10. Short Title – Death With Dignity Act – 1986
SECTION 44-77-30. When life-sustaining procedures may be withheld.
If a person eighteen years of age or older adopts a declaration that is substantially in the form provided in Section 44-77-50, whether executed before or after an amendment is made to the form, and that on its face is duly executed, witnessed, and authenticated as provided in Section 44-77-40 or on its face is in compliance with the law of the state of the declarant’s domicile at the time that the declaration is adopted, if the declaration provided for by the law expresses an intent that is substantially the same as the intent of the declaration provided in Section 44-77-40, and the person’s present condition is certified to be terminal or to be in a state of permanent unconsciousness by two physicians who personally have examined the declarant, one of whom is the declarant’s attending physician, and the other of whom is a physician other than the attending physician, then life-sustaining procedures may be withheld or withdrawn upon the direction and under the supervision of the attending physician.
SECTION 44-66-10. Short Title – Adult Health Care Consent Act – 1990
Purpose – Confers authority on a health care surrogate to consent on the patient’s behalf to the provision or withholding of medical care and to make financial decisions obligating the patient to pay for the medical care provided.
SECTION 4466-20. Definitions.
Defines “Patient” as an individual sixteen years of age or older who presents or is presented to a health care provider for treatment.
Defines “Unable to Consent” as unable to appreciate the nature and implications of the patient’s condition and proposed health care, to make a reasoned decision concerning the proposed health care, or to communicate that decision in an unambiguous manner. This term does not apply to minors, and this chapter does not affect the delivery of health care to minors unless they are married or have been determined judicially to be emancipated.
SECTION 44-78-10. Short Title – Emergency Services Non-Resuscitation Order – 1994
SECTION 44-78-25. Duties of EMS personnel when presented with “do not resuscitate order”.
When called to render emergency medical services, EMS personnel must not use any resuscitative treatment if the patient has a “do not resuscitate order for emergency services” and the document is presented to the EMS personnel upon their arrival or if the patient is wearing a do not resuscitate bracelet. EMS personnel must provide that degree of palliative care called for under the circumstances which exist at the time treatment is rendered.
SECTION 44-78-50. Chapter not condonation of mercy killing; minors ineligible for “do not resuscitate orders”; compliance with article not suicide.
(A) Nothing in this chapter may be construed to condone, authorize, or approve mercy killing or euthanasia or to permit any affirmative action or deliberate act to end life other than to allow the natural process of dying.
(B) No person under the age of eighteen years may request or receive a “do not resuscitate order for emergency medical services” as provided for in this article.
(C) The withholding of resuscitative measures pursuant to this article does not constitute suicide for any purpose.
The Ultimate DNR order revocation – Genesis 22:9-12 –
And they came to the place which God had told him of; and Abraham built an altar there, and laid the wood in order, and bound Isaac his son, and laid him on the altar upon the wood. And Abraham stretched forth his hand, and took the knife to slay his son. And the angel of the LORD called unto him out of heaven, and said, Abraham, Abraham: and he said, Here am I. And he said, Lay not thine hand upon the lad, neither do thou any thing unto him: for now I know that thou fearest God, seeing thou hast not withheld thy son, thine only son from me.
For Abraham, the stay of being executioner to his own son came with the call of an angel. Upon hearing his name Abraham lowered his knife and ended the prospective nightmare of having Isaac cry out the same words that God himself would later hear from His only son, “My God, my God, why hast thou forsaken me?”
William Shakespeare’s son died in 1596. He was eleven. Shakespeare left so little evidence of his personal life that no direct reaction to his son’s death has been found. Yet in his play The Life And Death of King John, written just after the boy’s death, Shakespeare writes these words for Constance, the grieving mother of Arthur, the young Duke of Brittany, murdered because he was rightful heir to the throne.
The Life and Death of King John, Act III, Scene 4
Grief fills the room up of my absent child,
Lies in his bed, walks up and down with me,
Puts on his pretty looks, repeats his words,
Remembers me of all his gracious parts,
Stuffs out his vacant garments with his form;
Then, have I reason to be fond of grief?
Fare you well: had you such a loss as I,
I could give better comfort than you do.
I will not keep this form upon my head,
When there is such disorder in my wit.
O Lord! my boy, my Arthur, my fair son!
My life, my joy, my food, my all the world!
My widow-comfort, and my sorrows’ cure!
Shakespeare may not have expressed his own personal feelings of grief through sonnet or diary, but he infused Constance with grief’s total blackness that follows hard upon your child’s death.
Constance’s last three lines echo in W. H. Auden’s oft quoted poem about grief:
Stop All The Clocks
He was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last for ever: I was wrong.
Auden was not writing about his son but grief cares not for blood relation, knows no societal boundaries, observes no funeral customs and expresses itself through the most unlikely sources. Still, the death of your son, your first-born son, the son that carries the dna of all that you were and the hopes of all that you could have been hits hard.
A Father’s Love
I am convinced, that when a man tells a woman he loves her, he only means that he desires her; and that the only total love in this world is that of a father for his son. – Enzo Ferrari
Enzo Ferrari’s son, Dino, died in 1956 from Duchenne Multiple Dystrophy. He was 24.