Running head: RESEARCH ETHICS: ARGUMENTATIVE
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Family Opposition to Organ Donation; or The Issue of Hastening Death
PHIL222
August 6, 2018
RESEARCH ETHICS: ARGUMENTATIVE
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Abstract
A twenty-five-year-old patient acquired substantial head trauma and neurological injury. The
prognosis of neuro consultants for “meaningful recovery” is less than 1%. Hence the patient will
continue in the vegetative state. His parents are religious and after consulting the priest and
physicians have decided to take him from life-sustaining treatment. The UNIFORM
DETERMINATION OF DEATH ACT says, “An individual who has sustained irreversible
cessation of all functions of the entire brain, including the brain stem, is dead.” (UNIFORM
DETERMINATION OF DEATH ACT, 1980). The patient is not brain dead however is
unconscious hence he is not dead and is alive. The patient’s injury is neurological, and it has
been only four weeks since the trauma. The patient does not have the medical directive.
Therefore, four weeks is too soon to withdraw life-sustaining treatment. The careful neurological
evaluation might reveal the facts for treatment with further recovery. (W Matsuda, A. M. 2003.).
However, the medical staff did not show any effort to convince the parents to wait with their
decision to remove the life-sustaining treatment but is facilitating the organ donor assessment.
When the Organ Procurement Representative arrived for potential assessment, she finds the
"organ donor" stamp on the patient's driver's license. The patient's parents were not aware of
their son's wish to donate organs. Even though the patient's parents found out his last wish, they
are not allowing the donation. In the best interest of the patient, including his age, persistent
vegetative state the cause of traumatic head injury, JD’s parents should not remove the lifesustaining treatment from their son at the current stage. By withdrawing the life-sustaining
treatment, they will murder their son.
Keywords: head, injury, trauma, withdraw, life-sustaining treatment, organ donor,
medical directive.
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Family Opposition to Organ Donation; or The Issue of Hastening Death
A twenty-five-year-old patient, JD, is not brain dead but spent four weeks in ICU and has
not regained consciousness. The patient most likely will continue in the vegetative state. His
parents decided to withdraw the life support. According to the JD’s driver’s license, he is an
authorized organ donor. However, his parents will not permit the organ donation of their son.
There are two issues arise within the case. The patient is unconscious for one month. His
condition defined as Persistent Vegetative State. The patient’s condition considered irreversible
when Persistent becomes Permanent. Prognosis for recovery can be established after the patient
has been in the vegetative state for some time which is greater than one month. (Lo, 2013).
Therefore, the withdrawal of Assisted Nutrition and Hydration (ANH) and Mechanical
Ventilation at this stage will constitute a murder.
If to assume the death is determined, then the second issue arises. JD is an authorized
organ donor, but his parents are not allowing for harvesting the organs of their son. The patient’s
parents are not yet aware of the recent1 changes to The Uniform Anatomical Gift Act (UAGA),
Section 8 “there is no reason to seek consent from the donor’s family because the family has no
legal right to revoke the gift.” (NCCUSL, 2009). The ethical dilemma will arise between
patient’s surrogates and medical providers. The organ donation dilemma is the main subject of
this case study. Nevertheless, I will first discuss the wrongness of the decision to withdraw lifesustaining treatment. I consider it disrespectful to address the organ donation process of the alive
person. Based on the Utilitarian approach, analyzing benefits and harms of this particular case,
at the stage where it stands right now, based on the facts and to promote overall better
consequences for the patient and in the best interest of the patient it is not to withdraw the
patient from the life-sustaining treatment at the current stage that is four weeks since the injury
has occurred.
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For the Best Interest?
After a massive motorcycle crash, JD the young, twenty-five-year-old man was admitted
to the hospital with the severe head trauma and neurological brain injury. He spent four weeks in
a coma in the ICU department. However, JD did not regain consciousness. He is not brain dead,
and his condition evolved into the vegetative state. The patient received several neurological
consultations while being in intensive care. The consultants' prognosis was JD has less than one
percent for meaningful recovery and prone to remain permanently in the vegetative state. My
questions are what medical facts the neurologists used for the prognosis? It has been only four
weeks since the injury. Why neurologists call JD's state "permanent" and why they call their
conclusion as "prognosis" but not "diagnosis"? "A vegetative state is defined as persistent if it
has lasted for one month." (Lo, 2013). The accurate prognosis for the patients' recovery requires
time and careful observation. Before that, it is a diagnosis of persistent vegetative state. (Lo,
2013). At this stage, JD’s life depends on the life-sustaining treatment such as Artificial Nutrition
and Hydration (ANH) and the Mechanical Ventilation.
JD has religious parents. As parents, they concerned about the health condition of their
son. After obtaining a consultation with their priest, JD's physicians, palliative specialist, and
hospital ethicist, they decided to withdraw the life-sustaining treatment and leave it up to God. I
wonder what arguments were provided at the consultation that leaded JD's parents to such
incompetent decision. Addressing the religious perspectives regarding life support, The Pope,
John Paul II clearly commented the life support issues at the International Congress on “Lifesustaining Treatments and the Vegetative State: scientific progress and ethical dilemmas,” held
in March 2004. “The sick person in a vegetative state, awaiting recovery or a natural end, still
has the right to basic health care (nutrition, hydration, cleanliness, warmth, etc.), and to the
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prevention of complications related to his confinement to bed. He also has the right to
appropriate rehabilitative care and to be monitored for clinical signs of possible recovery."
(CONGREGATION FOR THE DOCTRINE OF THE FAITH, 2004).
I never doubted the Vatican's knowledge. However, I was sure about healthcare staff
competency as well. In 2003, Dr. Matsuda discovered post-traumatic Parkinson disorder in some
patients with the severe traumatic brain injury. The Levodopa, medication known to treat
Parkinson's Disease was administered to those patients whose careful neurological evaluation
showed modifications in the neurological systems caused post-traumatic Parkinson’s Disease.
All three patients were able to recover from PVS with further transfer to the rehabilitation. (W
Matsuda, 2003). The patients in PVS considered "unaware" based on the absence of behavioral
response to external stimulation. The neuroimaging technology like MRI and EEG detected
awareness in many patients who entirely physically unresponsive. Although, the vegetative state
is primarily based on behavioral signs of attentiveness and following verbal orders. However, the
use of neuroimaging technology allows such patients to communicate with the outside world.
(Davinia Fernández-Espejo, 2013). The covert awareness of patients means they are alive and
can feel. That makes withdrawal a proven murder that is both unacceptable as ethically and
morally.
There is an issue that makes a significant difference between patients who are terminally
ill and those with the traumatic brain injuries. Both are called being in Vegetative State.
However, unconsciousness for terminally ill patients is the end stage of life; while the loss of
consciousness for traumatic brain injuries is reasonable and might be the beginning of a
recuperative process. (Joseph J Fins, 2012). Also, some trauma patients regain consciousness
after twelve months in a vegetative state. (Lo, 2013).
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There is no standard definition established on what is quality of life. The many people the many opinions. However, one thing is that quality of life is not the quality of health. Health is
included in the quality of life. Making a decision based only on the physical condition is not
morally correct. With older patients who are terminally ill, restoring the prior quality of life is
not possible. They are losing their ability to enjoy life, their dignity, and their autonomy.
(O'Loughlin, 2017). The high possibility they came to the meaningful end before the state of
unconsciousness. Hence, it is of the best patient's interest to stop the artificial life support. But
can we say the same about a twenty-five-year-old healthy man who likely had plans for that
evening or day when the accident happened? Where is he was heading? Was he in a hurry? Was
he speeding? Is it usual behavior for him? Why no one even suggested to talk to his friends? If I
were a hospital ethicist, I would use all my ability to persuade the parents not to withdraw life
support at the current stage.
If death is determined based on the cardiac arrest, then the second issue arises. JD's
driver's license shows that he is an organ donor. His parents are not allowing the donation. Also,
his signature on the back of the driver's license is damaged. He had not signed up for the online
state donor registry and had no healthcare directives on file. However, under Section 5 of The
Uniform Anatomical Gift Act, it is enough for the organ donor to have a driver's license showing
a symbol.
"SECTION 5. MANNER OF MAKING ANATOMICAL GIFT BEFORE DONOR’S
DEATH.
(a) A donor may make an anatomical gift:
(1) by authorizing a statement or symbol indicating that the donor has made an
anatomical gift to be imprinted on the donor’s driver’s license or identification card." Also,
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Section 8 of the UAGA barres others from overriding a donor’s decision to make an anatomical
gift. The Act states that autonomously decisions made during lifetime are irrevocable and takes
away from families the power, right, or authority to consent to, amend, or revoke donations made
by donors during their lifetimes. Thus, if a donor made such a gift, there is no reason for
procurement organizations or a physician to ask parents' permission to harvest the patient's
organs. (NCCUSL, 2009). Based on the Law of the UAGA the representative from the Organ
Procurement Organization (OPO) will continue with the donation process despite the wishes or
opinion of JD's parents.
It is not clear why JD's parents do not wish the donation to take place. They are religious.
However, all major religions in the worldview organ donation an act of charity or make it clear
that it is a decision to be left up to the individual or family. (Religion and Organ Donation, n.d.).
For most religions including Christianity, the organ donation is seen as a "gift of love." The
religious people beliefs that the death is the separation between the soul and the body. So, the
issue of how it is linked to the medical determination of death. (TONTI-FILIPPINI, 2012). The
clinical determination of death defined under two criteria. The Determination of Death Act states
that an individual who has sustained either (1) irreversible cessation of circulatory and
respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including
the brain stem, is dead. (NCCUSL, 1980). Pope John Paul II defined the death of a person as a
separation of the life-principle (or soul) from the corporal reality of the person. (TONTIFILIPPINI, 2012). In other words, he accepts the complete loss of all brain function including
the brain stem as the determination of death.
Refer to religious issues, JD's parents might not wish the organs of their son to be
harvested because of the uncertainty of the brain death after the removal of life support.
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However, without oxygen, at fifteen minutes, survival becomes nearly impossible. Also, it is
hard to imagine especially religious parents to perform such an act on their son. It is not even
immoral; it is beyond the existence of morality as is.
After JD's parents are informed that by the First Person Authorization2 they are not
allowed in any way to revoke their son's decision to donate his organs after death the only
rational choice for them to prevent the process is to stop the withdrawal of life-sustaining
treatment.
Counterargument
The theory I use for this case study is the opposite to deontological ethics. Since this case
is not typical and there is no considerable number of people in such a condition, I would call it an
individual case. The approach is utilitarian; however, not common that is Act Utilitarianism. The
decision is based on the current patient's condition that is not at the stage for making a final
decision. It is in the best patient's interest to apply existing technologies to perform a variety of
neurological tests to reveal possibilities of treatment with the outcome of regaining
consciousness. However, if for twelve months patient's awareness is not recovered then it is a
permanent vegetative state and withdrawing from life-sustaining treatment might be considered.
Let’s agree to disagree.
Catherine Constable in her article says that patients either in permanent or persistent
vegetative state if no medical directive has existed should be withdrawn from ANH. She states
withdrawing of life-sustaining treatment is to the best of the patient’s interest.
Her argument about families who wish to continue the artificial support is that they
misunderstand the stages of consciousness. However, she refers to MCS and PVS. Ms. Constable
does not emphasize that there is a difference between permanent and persistent state. Though,
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she is saying we act against the majority by keeping those patients on the life support. However,
who is the majority? Also, how the majority can wish something if there is no patients' age
provided nor the cause of the illness. What patients does she want to withdraw from lifesustaining treatment? Is that someone young after a crash with the traumatic brain injury or an
elderly terminally ill patient? I wonder why she is not considering these differences. These
distinctions play a significant role in the decision-making process. (Constable, 2012).
A former member of the board of organ procurement organization (OPO) resigned from
the position to become an organ retrieval representative from those with severe brain injury in
the vegetative state. For Dr. Joseph Fins it was pro bono service in giving of life to patients in
need of replacement organs who face the end-stage disease. He noticed some patients with
disorders of consciousness demonstrate not purposeful, autonomic behaviors such as sleep-wake
cycles, blinking, eye movements, and even the startle reflex that seemed in opposition to some of
the policies pursued by the organ donation community. Dr. Fins became concerned that
imminently these patients can die if a decision is made to withdraw the ventilator. Moreover,
MSC patients also fit under the Aspen Criteria of 20023. The ethical problem and horridness are
that some patients transferred for organ retrieval are still alive. This unacceptable and horrific
way of treating donors should be stopped. Also, clinicians should respect patients' prior wishes to
withdraw the life support, however not without common sense. Dr. Fins proposes a moratorium
upon solicitation when the outcome is unclear. (Joseph J Fins, 2012).
Three authors were interviewing family members whose relatives are in the permanent
vegetative state. They clearly explained the difference between persistent and permanent VS
conditions and informed the readers that the article is about those who are in permanent VS.
Further, they refer to the state as "PermVS" not to confuse anyone. They are not trying to
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manipulate or influence the reader with one or another point of view. They are trying to find a
solution as many others and bring their effort in this "painful" matter about life and death.
"Neurologist: … once we say in the court or wherever we say we’re going to withdraw
hydration, I mean, we’re essentially saying we’re going to kill this person. I mean, there is no
other outcome. And we’re doing this knowing that’s going to be the outcome, there is no other
benefit, there is no- It’s not a sort of second- you know, when you give morphine to relieve pain
and you happen to thinkInt: Double effect
Neurologist: That’s right. There’s no double effect of this. There’s only a single effect.
The withdrawal of hydration causes death. And if there is a double effect it’s distress, which is
hardly in the person’s best interest. So, you know, we are quite sanguine I suppose about the fact
we are killing them, but we’re doing it in a very slow and laborious and nasty way." (Stephen
Holland, 2014).
Conclusion
A person is not dead unless his brain is dead. A big issue is that surrogates often are the
closest relatives to the patient and many of them are incompetent in making decisions about
withdrawing of life-sustaining treatment. However, their incompetency is not their fault. Not all
people work or interested in Healthcare Industry and its issues and complications. We trust our
doctors. We trust people in white coats. We do not expect them to lie to us. Surrogates structure
their decision on physician’s consultation. Clinicians should provide correct information on
patient’s condition and explain differences between persistent and permanent vegetative state,
traumatic brain injury and terminally ill as well as organ donation process.
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References
CONGREGATION FOR THE DOCTRINE OF THE FAITH. (2004). Retrieved from
Vatican.va:
http://www.vatican.va/roman_curia/congregations/cfaith/documents/rc_con_cfaith_doc_2
0070801_nota-commento_en.html
Constable, C. (2012). Withdrawal of Artificial Nutrition and Hydration for Patients in a
Permanent Vegetative State: Changing Tack. Bioethics, 26(3), 157-163.
doi:10.1111/j.1467-8519.2010.01841.x
Davinia Fernández-Espejo, A. M. (2013). Detecting awareness after severe brain injury. Nature
Reviews Neuroscience, 14(11), 801-809. doi:10.1038/nrn3608
Joseph J Fins, M. (2012). Severe Brain Injury and Organ Solicitation: A Call for Temperance.
American Medical Association Journal of Ethics, 14(3), 221-226.
doi:10.1001/virtualmentor.2012.14.3.stas1-1203
Lo, B. (2013). Chapter 20. In B. Lo, Resolving Ethical Dilemmas : A Guide for Clinicians (5 ed.,
pp. 165-168). Philadelphia, PA, USA: EBSCOhost.
NCCUSL. (1980). Uniform Determination of Death Act. Chicago.
NCCUSL. (2009). REVISED UNIFORM ANATOMICAL GIFT ACT (2006). Chicago:
NATIONAL CONFERENCE OF COMMISSIONERS ON UNIFORM STATE LAWS.
Retrieved from www.nccusl.org
O'Loughlin, M. J. (2017). THE POLITICS OF LIFE AND DEATH. America, 217(2), 18-27.
Retrieved from www.americamagazine.org
Religion and Organ Donation. (n.d.). Retrieved from Finger Lakes Donor Recovery Network:
http://www.donorrecovery.org/learn/religion-and-organ-donation/
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Stephen Holland, C. K. (2014). Death, treatment decisions and the permanent vegetative
state:evidence from families and experts. Med Health Care and Philos, 413-423.
doi:10.1007/s11019-013-9540-y
TONTI-FILIPPINI, N. (2012). RELIGIOUS AND SECULAR DEATH: A PARTING OF THE
WAYS. Bioethics, 26(8), 410-421. doi:10.1111/j.1467-8519.2011.01882.x
Traino, H. M., & Siminoff, L. A. (2013). Attitudes and acceptance of First Person Authorization:
A national comparison of donor and nondonor families. Journal of Trauma and Acute
Care Surgery, 74(1), 294-300. doi:10.1097/TA.0b013e318270dafc
W Matsuda, A. M. (2003). Awakenings from persistent vegetative state: report of three cases
with parkinsonism and brain stem lesions on MRI. Journal of Neurology, Neurosurgery
& Psychiatry, 74(11), 1571-1573. doi:10.1136/jnnp.74.11.1571
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Footnotes
1
The Case of Family Opposition to Organ Donation. Despite First Person Consent. By
Tarris Rosell, PhD, DMin, 2011. Center for Practical Bioethics.
2
First Person Authorization or “donor designation” is the most recent in a long line of
regulatory efforts attempting to bridge the ever-increasing divide between the supply of
transplantable organs and their demand. First Person Authorization makes the indication of an
adult’s intent to donate some or all organs and/or tissue via a driver’s license, a donor card, or
other documents legally binding. Enactment of this legislation necessitates changes in the way in
which organ procurement organizations (OPOs) approach families of patients whose expressed
desire was to become an organ donor at death. Rather than requesting family permission for
donation, OPOs must now inform families of the patient’s decision to donate. Currently, all 50
states, the District of Columbia, and the US Virgin Islands have enacted the legislation. (Traino
& Siminoff, 2013). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3540811/
3
Aspen. American Society for Parenteral and Enteral Nutrition. Clinical Guidelines.
https://www.nutritioncare.org/Guidelines_and_Clinical_Resources/Clinical_Guidelines/