Um batom chamado desejo
English version | (Definitely not) Sleeping Beauty
Notícias 2. 4. 2020
Do we die when our time comes? Or when we decide that life, by itself, is already death? To speak of euthanasia is also to speak of rights. Including the ones we already have.
Where there is life, death is inevitable. But the decision to anticipate it, even if to save someone's suffering, is a matter that moves passions, divides individuals and instigates debate. In Europe, the first countries to decriminalize euthanasia were the Netherlands and Belgium back in 2002. Today, medically assisted death is not a crime in two more European countries: Switzerland and Luxembourg. In Portugal, euthanasia, or assisted death, the act that leads to the death of a patient by his / her will, is not made explicit as a crime, but can be included in three articles of the Portuguese Penal Code: privileged homicide (Article 133), homicide at the victim's request (Article 134) and crime of incitement or suicide assistance (Article 135). Between 2009 and 2019, seven Portuguese citizens died in Dignitas, Switzerland, according to newspaper Jornal de Notícias, which, in February, reported that there were another 20 members of the non-profit association that "helps people to die with dignity."
The discussion is not new, nor are the arguments in both sides. Among the main foundations of those who defend the decriminalization of euthanasia is the possibility that terminally ill patients can end long-term suffering with no end in sight. In addition, the issue of individual rights, dignity and freedom of choice are also the cornerstones of those who believe that medically assisted death should be decriminalized. On the other hand, opponents of euthanasia argue that human life is sacred and inviolable, often based on religious or even ethical beliefs. Another argument is the fear that the law will create precedents and lead to a trivialization of assisted death, which will increasingly cover more clinical conditions.
However, the issue is complex and goes beyond the simplicity of the arguments described above. It was not the first time that the topic was discussed in São Bento (where the Portuguese parliament is located), but it was in February that the first step was taken to decriminalize euthanasia in Portuguese territory, with the approval in Parliament of the five bills by BE, PAN, PS, PEV and IL (Portuguese political parties). All were approved in general (the PS’s was the most voted, with 128 votes in favor), initiating a legislative process far from ending. After the approval in general commission, the bills must go to the specialty, where they undergo adjustments until reaching a final text. This new text must again be voted on in the specialty commission and then submitted to a final vote. Only then does the law go to Belém, where the President (who has said that he will only pronounce on the matter at the “last second”) can veto it, promulgate it or send it to the Constitutional Court. A lengthy process, despite the fact that many are already claiming victory with this first step.
All approved diplomas are based on common principles: the individual who requires euthanasia must be over 18 years old and have a clinical condition free of mental illness; he has to make an express, well thought out and free will, through a doctor, and must be consciously and mentally capable; his clinical situation cannot show any prospects for a favorable evolution, and his suffering must be constant and unbearable; the doctor to whom the request is made must know the applicant well, followed by a certification process with the intervention of other doctors. The decriminalization of all proposals from all parties also covers those who practice assisted death, under the conditions of the law, with the conscientious objection being guaranteed to doctors and nurses.
But the apparent (not every deputy voted for the diplomas) harmony between parties does not necessarily extend outside the doors of the Assembly. In declarations to Agência Lusa, a Portuguese news agency, minutes after the historic approval, the president of the Ordem dos Enfermeiros, Ana Rita Cavaco, considered that “there is not enough maturity to make this discussion, because there is much to do for life before we do for death”. "We do not have a palliative care network, we do not have home teams for everyone, and therefore we would have to start there and then have this discussion", she claimed. In 2018, when the topic was first voted on in Parliament, Antena 1 (a Portuguese radio station) spoke with Jan Berhein, a retired physician specialized in euthanasia and one of the first advocates of euthanasia law in Belgium. “First of all, palliative care has to be offered to the patient, and refused. And this happens. Rarely, but in some cases it does. Or else accepted, but with no effective results. This is the first condition”, he said back then to the radio station.
From law to practice
For eight years, the right to access palliative care has been contemplated in the Portuguese law for “patients in distress due to incurable or serious illness, in an advanced and progressive stage, as well as to their families, with the main objective of promoting the their well-being and their quality of life, through the prevention and relief of physical, psychological, social and spiritual suffering.” But law to practice goes a long way. The Autumn 2019 Report, from the Portuguese Observatory for Palliative Care (OPCP), analyzed the network's coverage in the country and characterized human resources, with data from December 31, 2018. The findings were revealing: six districts with no team and others with rates above 100%. The study concluded, taking into account the full time schedule dictated in the national healthcare system, of 40 hours per week for doctors and 35 hours for the remaining professionals, that are missing about 430 doctors, 2,141 nurses, 178 psychologists and 173 social workers. Alarming numbers that translate into people who, at the most vulnerable time in their lives, are not having a right that assists them.
“The presence of a National Palliative Care Network with specialized services is maintained, but with a level of generalist provision. This statement is supported by the recommendation that only with full dedication to palliative care can one consider that the care provided by these professionals falls within the level of specialized differentiation (...). Although there is an evolution in the number of resources of this type of care, there is still a structural and professional coverage, national and in most districts well below the minimally acceptable level, with deep asymmetries at district level. This asymmetry does not guarantee a specialized integrated and articulated approach between the different valences / teams, due to the absence of one or more valences, being a serious obstacle to the accessibility to these resources as a human right and a nuclear condition for universal health coverage”, underlines the study.
More. According to the president of the Palliative Care Association, many patients only have access to palliative care in the last hours of their life. In an interview with TSF, a Portuguese radio station, Duarte Soares explains: "It is a reality that is very worrying, because we spent many years asking for more palliative care beds, we realized that the State made a transfer from the social sector, almost giving the idea that it does not trust the social sector to provide palliative care and bet on bringing these beds to the public sector, but with few palliative care beds we realize that there are beds that are not used ... Within the few beds that we have, we have low occupancy rates especially in the sector. It is not just a question of funding, the State has to worry about improving what are the timely referrals of these patients and reducing the bureaucracy of these referrals. " At the same radio, Duarte Soares argues that it is only possible to reverse this scenario if the State makes an investment.
While for many the issue of euthanasia should not be discussed due to the severity of the state of palliative care in Portugal, for others, palliative care and euthanasia are not alternatives. Because they are independent things. Citizens in the conditions described above have, since 2012, the right to palliative care. What is being discussed now in Portugal (and in Spain, interestingly) is the decriminalization of euthanasia. “Strictly speaking, no one has, either in the Netherlands or in Belgium, the right to euthanasia (this would imply the legal obligation and the respective duty of satisfaction in 100% of cases). The case is already different in the right to palliative care, where there is a duty to provide them always. What does exist, in these legal systems, is the right to request euthanasia”, says Miguel Oliveira da Silva, professor of Medical Ethics at the Faculty of Medicine of the University of Lisbon, in the book Euthanasia in Portugal - Who's Afraid of the referendum?. The same author, in an interview with the newspaper Público, argues that “promoting the decriminalization of euthanasia when 80% of people do not have access to palliative care is highly incorrect from an ethical point of view and from justice and equity.”
It is now known that the Jornadas de Cuidados Paliativos 2020 (a summit to discuss palliative care) were postponed “on public health grounds and in obedience to the authorities' suggestions”, because of COVID-19. And it is also, due to the Coronavirus, that the discussion about euthanasia came out of the country's spotlight. The pandemic state forced parliamentary work to be almost completely suspended, leaving the issue of euthanasia pendant. Scheduled plenary sessions were canceled, parliamentary commissions reduced to a minimum. As newspaper Diário de Notícias explains, “the proposals on euthanasia went to the Constitutional Affairs commission, which appointed a working group that will try to reach a consensual text, based on the various proposals that are on the table. But this task did not begin and should only be resumed when Parliament's operation returns to normal”. At the date of publication of this issue of Vogue Portugal, speaking about normality is difficult, with the numbers of people infected with Coronavirus in Portugal on a clear rise, as elsewhere in the world. With the legislative process still underway, and the pandemic with no end in sight, we have time, a lot of time, specially to think about the issues that will define our future - like this one.
This article was originally published in Vogue Portugal's Freedom issue, from April 2020.
Para ler este artigo em português, veja a edição de Liberdade da Vogue Portugal.