An infant receiving hospital care (Photo: Sandra Calligaro)
On the 16th October, Mother’s Day, the heartbreaking story of Camila Herbón was made public once again when her mother, Selva Herbón, sent a letter directly to the president asking to be given a personal audience. This personal audience, she hoped, would give her the chance to describe face-to-face the situation of seemingly endless suffering that the Herbón family have found themselves in since Camila’s birth two-and-a-half years ago. At the same time she hoped it would help to speed up the decision of a lengthy legal debate in Congress on the right to a “limitation of the therapeutic effort” in Argentina.
Camila has spent her entire life in a persistent vegetative state, kept alive only by her life support system, having suffered a 20-minute cardio-respiratory arrest as a result of complications at birth. She cannot see, hear, smell, cry or feel pain, and has no knowledge of her own existence. Yet her doctors continue to treat her, against the express wishes of her mother, who has the support of three bioethics committees, as well as the Catholic Church.
Euthanasia is illegal at the moment throughout most of Argentina. There is only one province that permits it and even then, only in a passive sense. In Río Negro, “any person that suffers an irreversible illness in a terminal state has the right to refuse surgical procedures, water and food, and artificial resuscitation when they are considered disproportionate from the perspective of getting better, and they produce pain and suffering”.
Seeking a Definition
Confusion over how exactly to define the word ‘euthanasia’ is a key problem, even within the medical community, where there is no consensus. According to Gustavo de Simone, oncologist and specialist in palliative care: “Euthanasia in a strict sense implies the administering of a fatal dose of a drug with the intent to induce the immediate death of someone who asks that drug to be administered, and on the condition that that person is in a situation of incurability or great suffering.”
Administering a fatal dose (Photo: Wikipedia)
However, others such as Beatriz Firmenich, philosopher and coordinator of the Bioethics Committee of INCUCAI, prefer simpler terms. “From the Greek, we translate it as ‘good death’. Treatment, or lack thereof, that brings about a ‘good death’. It is not about provoking death.” According to Firmenich the case of Camila falls within the limits of euthanasia simply because what is trying to be achieved is a ‘good death’.
Ruben Revello, both a priest and a bioethics expert from the Institute of Bioethics at the Catholic University of Argentina (UCA), sees things differently again. His definition, like De Simone’s, involves an intention to cause death. With Camila, he assures, that intention just does not exist. “In the case of Camila, her mother doesn’t want to cause death. As the church says, wanting to cause death is not the same as allowing death to follow its natural course. What she wants to avoid, which is to do with the field of bioethics, is therapeutic cruelty.”
Although experts might not agree on what it is that defines euthanasia, there seems to be an agreement when it comes to what needs to be done with Camila. Avoiding therapeutic cruelty, or as Firmenich labels it a “limitation of the therapeutic effort”, is taken to mean the withholding of treatment that is considered disproportionate to the patient’s situation. That is to say, treatment that does not have any reasonable chance of making that situation better; at best only serving to keep the patient from dying, and at worst causing more suffering. “It is about allowing death to come, without technological interference” says Firmenich.
Medical professionals generally accept a patient’s basic right to refuse treatment, so-called passive euthanasia, on that grounds that they deem that treatment ‘extraordinary’. “If a patient has expressed their wish when they were in a condition to do so [i.e. deemed mentally competent] they have the perfect right to refuse treatment” insists Firmenich.
But who decides whether treatment is ‘disproporionate’ when the patient is unable to do so? Usually, within the context of the patient-doctor relationship, there is an overlapping between what the doctor deems to be ‘disproportionate’ and the patient deems to be ‘extraordinary’, and the decision to limit treatment is taken privately within that relationship. “I think that, in real medical practice, euthanasia is carried out” suggests Eduardo Rivera Lopez, professor of philosophy and bioethics at the University of Torcuato di Tella.
There may be cases in Argentina of doctors helping patients to die but, according to Firmenich, they “remain part of the privacy and confidentiality of the doctor-patient relationship”. The reason that the case of Camila Herbón has been made public is because there is a rupture in that doctor-patient bond. On one side, the doctors are scared of the legal consequences of actions that are not specifically accounted for in current legislation. On the other, Camila’s family sees the doctors not as people there to facilitate the best care possible, but as people looking to treat Camila like an object of study.
The debate currently going on in Congress looks to address the specific problem of the doctors’ fear that they will be held accountable to the law for any action, or omission of action, that causes the death of a patient. “From a legal perspective,” says Dr. Ricardo Rabinovich, professor of Law at the University of Buenos Aires,”it is necessary to amend the Criminal Code of Argentina so that a doctor who limits life support is not convicted of murder, or even worse, aggravated or premeditated murder.
The Legal Debate
There are currently twelve projects related to the debate being discussed in Congress; five in the upper house, and seven in the lower. They address topics ranging from the idea of a ‘living will’, whereby a patient would expressly lay out decisions to be taken at the end of their life, to the issue of palliative care, and its presently underdeveloped nature. With specific reference to a ‘dignified death’, Frente para la Victoria legislator Jorge Rivas proposes an amendment to the existing law on patients’ rights to incorporate directives allowing for the “limitation of the therapeutic effort”.
While some believe this acceptance of ‘passive euthanasia’ to be a step forward in the recognition of the rights that each person has over their own body, for others it risks opening the door to ‘active euthanasia’, something that Revello describes as “murder”.
Plaza Congreso (Photo: Beatrice Murch)
According to Firmenich, the answer does not involve new legislation at all. “It is clear from patient rights and medical criteria if there is a consensus between the medical team and the family, we do not need another law. We need to apply and expand on the ones that we have already got, like the law of patients’ rights from 2010.”
On this point, Revello agrees: “There is already a law in Argentina, the law of patients’ rights. But the law was approved without specific regulations. More than a new law, I would recommend that what we already have be regulated, following specific criteria that respect the autonomy of the patient as well as the autonomy of the doctor.”
For Gustavo De Simone, what needs to be done has little to do with current or future legislation. “We need to develop palliative care” he explains. “What I hope is that there will be a strong pressure from society to demand the implementation of and right to palliative care. And I hope that at a basic level palliative care will be an obligatory part of medical training. Not just for specialists but for everyone medically trained. Then, little by little, we will be able to improve how we treat pain, suffering, and the end of life.”
Lead image by Javier Santana
