Euthanasia a slippery slope that ends in involuntary euthanasia

Euthanasia was legalised in Belgium in 2002, where is defined as “the intentional termination of a patient’s life by a physician at the patient’s request”, so that only voluntary euthanasia may be legally carried out in Belgium (J Med Ethics 41; 625-629, 2015). However, this legal requirement of voluntarism is not always fulfilled.

Thus, a study conducted in Flanders in 1996 found that 3.3% of cases of euthanasia had occurred without the prior request of the patient. In other words, they were involuntary euthanasias. Another study (also in Flanders) found that there had been 1796 cases of involuntary euthanasias (3.2%). A more recent study from 2007 found that the percentage of involuntary euthanasia was 1.8%, while another in 2013 found 1.7%.

However — and we believe this is important — the percentage of involuntary euthanasia in patients who were 80-years-old or over rose to 52.7%, while in those with diseases other than cancer, this figure reached 67.5%. The decision was not discussed with the patient in 77.9% of cases (J Med Ethics 41; 625-629, 2015).

Canada experience

A Recent statement of Professor Somerville, who spent 40 years living and working in Canada,  has recently returned home to Australia to take up the position of Professor of Bioethics in the School of Medicine at The University of Notre Dame Australia, Sydney where she says claims by Australian pro-euthanasia advocates, including media personality Andrew Denton, that euthanasia and assisted suicide is working safely overseas don’t stand up to basic scrutiny.

“Wherever it has been legislated there are very serious problems,” she says.

In Quebec, Canada, where doctor-assisted suicide has been legal since December 2015, a recent report on the first seven months of the law’s operation found that 262 people died by ‘Medical Aid in Dying’ – almost three times the number of deaths previously predicted by the Province’s Health Minister.

Relevant figures in Canada show that involuntary euthanasia is the effect of it legalization

In 21 of those 262 deaths or eight per cent of cases, the doctors had not complied with the law. Eighteen of the cases did not have the opinion of a second, independent doctor; in two cases it was found that the person might not have been terminally ill and in one case it was not clear that the person even had a serious illness.

“Now when the law is brand new and you still can’t get doctors to comply with it, what hope have you once complacency sets in?” Professor Somerville says.

“And one of the things that pro-euthanasia people argue is that euthanasia or assisted suicide will be rare. Well, 262 cases in just seven months are not rare.

“Officially, around four per cent of all deaths in Belgium and the Netherlands are euthanasia or assisted suicide. Now if we translated that rate to the population of Australia, we’d have about 6000 deaths by euthanasia or assisted suicide a year. I don’t call that rare.” (MNNews March 2017, see HERE)

These figures are very disturbing and confirm how when euthanasia is legalised in a country, it can lead to a slippery slope that end in involuntary euthanasia.

 

It is dangerous to exclude ethical judgment from medical decisions in which death is knocking at the door of life

In medical cases in which death comes knocking at the door of life, circumstances arise that are not easy to judge and even less easy to resolve. Such cases can be paradigmatic, like that of Charlie Gard. I believe, therefore, that the first thing we must do is to treat all parties with respect and courtesy, especially those who most suffer for being the protagonists of the events, in this instance the sick child and his parents.

From an ethical point of view, there are a number of aspects that should be evaluated. If I forget one, it is not with the intention Great Ormond Street Hospital doctors. Aspects that should be evaluatedof ignoring it, but because of my own limitations.

Great Ormond Street Hospital (NHS) doctors

To begin with, it should be said that Great Ormond Street Hospital (GOSH) is a leading children’s hospital, one of the most prestigious in the United Kingdom, so we should assume that its medical team — and in all likelihood those who took care of Charlie — are highly professional.

Gosh pleaded for Charlie to be taken off the mechanical ventilation

In April this year, when Mr Justice Francis issued his first verdict, the team from the London hospital pleaded for Charlie to be taken off the mechanical ventilation keeping him alive. This meant the immediate death of the child.

Around the same time, a distinguished American doctor, Dr Michio Hirano, offered Charlie’s parents the possibility of treating the baby with a novel therapy, which, it seems, had shown some beneficial effect in another American child who had a disease similar to that of Charlie’s (Child tried by the experimental treatment Charlie Gard’s) In my opinion this offer ethically conditioned the decision taken by the doctors at GOSH. Since Charlie’s risk of death was not imminent and there was hope — albeit little — of improving his health, removing his mechanical ventilator would have been, I believe, an act of euthanasia. This also seemed to be the judge’s understanding, because he gave Charlie more time to live.

In July, after Dr Hirano’s trip to London to evaluate the baby and assess the possibility of instigating his experimental treatment, this situation still further supported the advisability of keeping Charlie alive. However, after the feasibility of using his therapeutic proposal was ruled out by the American neurologist and an unidentified Italian colleague, continuing with the mechanical ventilator seemed like futile therapy, and so could have incurred therapeutic obstinacy. Consequently, I believe that withdrawing the mechanical ventilation, at that time, was an ethically correct medical act.

Why was the treatment offered by Dr Hirano not used in January when it might have been effective?

There is, though, another medical aspect that should be evaluated. Charlie was born on 4th August 2016, and appeared to be a healthy baby, but in December, before Christmas, he began to develop seizures that led doctors to suspect that he had a serious illness. In January, he was diagnosed with a serious genetic disease, characterised by convulsions, encephalopathy and progressive muscle weakness, due to an abnormality in the RRM2B gene. This disease was known to be progressive. It was also known at that time that there was an experimental treatment with nucleosides that had proven useful in a child with a disease similar to Charlie’s. Thus, the question that immediately arises is: why was the treatment offered by Dr Hirano, the American neurologist, not used in January when it might have been effective? Assessing this fact, renowned bioethicist Julian Savulescu said, in a personal note to one of our members, that this behaviour could incur professional negligence. While I do not know if it could be classified as such, the question was raised, which in my opinion would have required a more decisive medical action.

 

Doctor Michio Hirano

We believe that the attitude of the American doctor was ethically correct, because he offered the parents a treatment that, while experimental, might have some chance of success in the child, albeit small. However, when he later examined Charlie in London and became aware of the child’s brain damage and that the life expectancy that his treatment could offer were not very objective, he abandoned the use of this therapy, in agreement of course with the doctors at the hospital, a decision that I believe to be ethically correct. I also think it positive that Hirano withdrew the offer of his novel therapy, because although it could have helped to increase his social popularity, he gave in to the medical judgement that the case merited. In my view, this decision was also ethically correct.

Charlie’s parents

They complained because Charlie was allowed to deteriorate to the point of no return

On judging the ethical behaviour of Charlie’s parents, Connie Yates and Chris Gard, we should make our respect for their decisions clear at the outset, because I have no doubt that they always acted thinking of the good of their son. Regardless of this, however, the first thing to highlight is Connie and Chris’s profound disagreement about the fact that their son was in hospital for months with no therapeutic remedy applied, while a legal dispute was settled between GOSH and them. Between January and April, when Mr Justice Francis issued his first verdict, the hospital could, in the parents’ opinion, have started treatment; accordingly, they showed their disagreement, and complained because Charlie was allowed to deteriorate to the point of no return, especially as regards his brain and muscle degeneration, without providing treatment that could have improved his health in some way. In their opinion, it would have been essential to provide the American team and the judge, if possible, with all the medical information so that Dr Hirano could have made a more informed evaluation of his nucleoside treatment, and the judge could have taken this into account.
The fact that Charlie’s parents accepted Mr Justice Francis’s final decision to take the child off assisted mechanical ventilation, which is what caused his death, seems a decision that, while it must undoubtedly have been very painful for them, I believe was ethically correct, because prolonging treatment at that time would have been to incur therapeutic obstinacy.

Justice Francis

On 24th July this year, the judge issued the verdict that brought about Charlie’s death. As mentioned, we believe that his decision was ethically correct, because with access to the therapy proposed by Dr Hirano ruled out, Charlie’s life expectancy was very limited and there was no prospect of improvement in the serious condition that he suffered.

A final social aspect

As we know, in light of the possibility of transferring their baby to the United States to be treated by Dr Hirano, Charlie’s parents started a campaign to raise funds due to their own lack of financial resources. As they themselves stated, they managed to raise 1.5 million Euros, so the problem now arises of what to do with this money. In a recent statement (see HERE), they have said that they will use it to help the parents of children who have a disease similar to Charlie’s, a decision that honours them and that from an ethical point of view, could not be more correct.

Conclusion

I will finish as I started. In all cases in which we consider passing judgment on the medical actions that are taken in a terminally ill patient, whether they be child, adult or old person, that decision may be controversial and even difficult to carry out sometimes. What is in no doubt, however, is that it is a time of great suffering, especially for the patient and their relatives, so as individuals and as a society, I believe that our first obligation is to treat them with respect and, I would even say, with great affection. Nevertheless, this is no obstacle for ethical judgment to conform to good medical practice, especially respecting the dignity that the patient deserves.

 

Justo Aznar

Bioethics Observatory – Institute of Life Sciences

Catholic University of Valencia

In 2015, 2023 patients were euthanized only in Belgium.  Organ donation from euthanized patients These patients could, in theory, be organ donors; however, 926 (45.8%) were excluded because they were over 75 years old.

A total of 684 organs were eventually useful for donation in Belgium. But, in Belgium and Netherlands, the countries that this practice is permitted, it is rarely performed; as of August 2016, 43 patients undergoing euthanasia had donated organs. The same year, 1288 Belgian patients were on transplant waiting lists (See HERE).  It is clear that, although the organs from euthanized subjects could in some measure reduce transplant waiting lists, the fact that they are obtained from euthanized patients presents unquestionable ethical difficulties.

Of the 594,000 same-sex couple households in the United States, 115,000 have children

In 2014, approximately 37,800 male same-sex couples in the United States had children, most through gestational surrogacy.   Little is known about the reasons these couples have for choosing this technique to have a child. A study has now been published (see HERE) that has evaluated the reasons why same-sex couples choose surrogacy.

Most do so because of the genetic links established. Just over half of fathers (55.74%) were satisfied with surrogacy. All this is apart from the objective ethical difficulties that surrogacy entails.

Men with children

There is one group whose incomes are far above the rest: same-sex “married” men with children. Their income is rough $275,000, more than double the pretax income for heterosexual couples and same-sex married female couples with children. This is a select group of people for whom the cost of children is particularly high. Using a surrogate can cost $250,000, and adoptions can cost upward of $30,000.

Of all the ART available to intending parents, surrogacy is arguably the most controversial (Jadva, 2016). Only 19 states in the USA currently allow commercial gestational surrogacy to married same-sex couples and in 15 states it is practiced because no statute or published case law prohibits it ().

 

Lung organoids have been produced from human pluripotent stem (iPS) cells that contain various components of lung tissue, and even airways and alveolar structures (see HERE). Recapitulation of lung development from human pluripotent stem cells (hPSCs) in three dimensions (3D) would allow deeper insight into human development, as well as the development of innovative strategies for disease modelling, drug discovery and regenerative medicine. Lung organoids produced resemble those of the second trimester of pregnancy. The authors discuss the potential use of this model to study pulmonary fibrosis in vitro and to model lung diseases.

Photo ARTICLES | Journal of Applied Physiology

CRISPR techniques are gaining traction in another realm of medical technology. CRISPR diagnosis tool

It has recently been announced that the CRISPR tool, used up to now in the field of genome editing, can be used in another field, namely in diagnosis, combining it with the enzyme Cas13a instead of with Cas9 (See HERE). By combining CRISPR with the new enzyme, discovered by researchers at the University of California, Berkeley, investigators can quickly and cheaply detect several specific RNA sequences at the same time, including the RNA of some viruses, such as Zika. This new use does not fall within the field of genome editing, so it does not share its bioethical issues, but it is a major biomedical breakthrough.

Palliative is a patient right 

Since its introduction in the 1980s, palliative care has been evolving gradually in Latin America. There are currently 922 services in 19 countries. This corresponds to 1.63 services per million inhabitants, so most patients in the region who require this treatment do not have access to it.

The Atlas of Palliative Care in Latin America stresses that the development of palliative care in Latin America has been very slow and fragmented.  Thus, it ranges from 16.06 services per million inhabitants in Costa Rica down to 0.24 in Honduras. Chile has the highest absolute number of services (277), while 46% are located in Argentina and Chile, accounting for 10% of the entire Latin American population. This confirms that governments must adopt the public policies and measures necessary to guarantee that the needs of the entire population are met. North America and Europe countries are also far away from patients’ needs (Vida Universitaria. University of Navarra. 21-III-2014).

WHO evaluation of the increasing of palliative care need (see HERE)

The need for palliative care has never been greater and is increasing at a
rapid pace due to the world’s ageing population and increases in cancer
and other noncommunicable diseases. Despite this need, palliative care
is underdeveloped in most of the world, and outside North America,
Europe and Australia, access to quality palliative care is very rare.
Palliative care is expanding in the developed world in spite of myths and
misunderstanding about its nature and purpose, but is only beginning to
be available in the developing world where it is needed most.

In recent years, many efforts have been made by scientists and biomedical engineers to develop ex-vivo models of human tissues and organs using 3D printing techniques (see our report HERE) for various purposes. In particular, the potential organoids using 3D techniques can be used to assess the functions of different human organs, deepen our understanding of various diseases, and also serve as a substrate for experimentation with new drugs. Now, a webinar in Nature (nature.com webcasts) has evaluated the possibility of detecting specific drugs for the treatment of malignant tumors, especially colorectal tumors. Using this technique, they evaluated more than 3000 molecular compounds that have been identified and validated to prevent the recurrence of colorectal cancer, which, from a medical and bioethical point of view, is very positive.

Premortem interventions before donation in circulatory arrest in children could have objective ethical problems 

(See our special reports about criterion of death and organs transplantation HERE)

Up until a few years ago, performing medical interventions in end-of-life situations had been proposed as actions centered on the best interests of the dying patient.

The growing demand for organs for transplantation has created a need to increase the number of organ donors (see HERE).

Since the number of brain-dead donors is currently insufficient to meet the needs of patients on the transplant waiting list, medical procedures have been developed in the last decade aimed at ensuring that the organs from donors in cardiac arrest are also suitable for successful solid organ transplantation (see HERE our article about the relation between excellent figures of organ donation and organ donors with cardiac arrest in Spain).

Nevertheless, in order to achieve sufficient organ viability in donors with cardiac arrest, a series of medical procedures need to be performed that have the main aim of reducing the warm ischaemia time to which these organs are subjected, in order to increase the chances of post-transplant success.

An article has recently been published in the Journal of Medical Ethics (1“Premortem interventions in dying children to optimise organ donation: an ethical analysis”, whose authors Joe Brierley and David Shaw analyze the ethical and legal aspects of premortem interventions performed in dying children, aimed at optimizing organ donation for transplantation following cardiac arrest.

Premortem interventions in pediatric patients for organ donation from an ethical perspective

This article examines the legislative aspects (specific to the United Kingdom), and also gives a description and analysis of the elements that, from an ethical perspective, might support – or contradict – the performance of premortem interventions in pediatric patients for organ donation.

The fact that the procedures for organ harvesting and perfusion must be performed in surgical areas means that the dying process in these patients, who are to be donors, must take place in the theater or areas close to it. This can limit family support, which good end-of-life care practices should entail. The authors of the article believe that that this support can be given equally in those areas and, therefore, should not be a significant ethical impediment. They also believe that, given the frequent loss of consciousness of children in end-of-life states, the fact that the death occurs in surgical areas should not be an obstacle, since it would not involve additional suffering for the child, provided that the parents have given their consent for the death to occur in such areas.

Controversial aspects.  Medical interventions that must be performed to optimize the time of cardiac arrest

One of the most controversial aspects presented in the aforementioned article is the set of medical interventions that must be performed to optimize the time of cardiac arrest. In order for the donor organs to have the highest chance of success for transplantation following cardiac arrest, this should be performed in a programmed and controlled manner. In order to do this, it is often necessary to prolong (or implement) mechanical ventilation and/or administer vasoactive drugs that optimize the cardiocirculatory state before the definitive circulatory arrest. Brierley and Shaw consider these procedures as ethically acceptable if the parents give their consent. Moreover, they also consider that these interventions should be permitted, given that some of them are already carried out to postpone the time of death, for example, to await the arrival of a relative who will be with the child in this final phase of life. Within this section on therapeutic interventions is a reference to an article on the controversial procedure of elective intubation and mechanical ventilation in anencephalic children who have little likelihood of long-term survival. The authors are of the opinion that these procedures should be performed, and are ethically acceptable, considering “parental love and autonomy balanced against an uncertain and arguably minimal risk of harm,” especially if done with appropriate sedation and analgesia. It is noteworthy that the authors themselves say that “living humans ought not to be used only as a means to the end of providing organs”.

Nevertheless, Brierley and Shaw omit any analysis of the fact that anencephalic children are living human beings, and that the diagnosis of anencephaly is not necessarily associated with an end-of-life stage, but can be associated with prolonged survival.

The third section considered in the article is the performance of specific therapeutic interventions aimed at improving the quality of the organs for transplant. These include:

  • administration of immunomodulatory agents or anticoagulants,
  • performing techniques such as fiberoptic bronchoscopy (in the case of donor’s lungs) or premortem insertion of intravascular cannulae.

In the article, the authors say that these procedures are difficult to justify, but that the balance between the harm caused to the patient and the benefit received by the recipient means that these interventions should be considered tolerable from an ethical point of view.

The aspects previously carried out in relation to the interventions performed in organ donation for transplant after cardiac arrest in dying children do not differ substantially from those performed in adults in similar clinical circumstances. The significant difference lies in the fact that premortem interventions before donation in circulatory arrest in children require the informed consent of the parents and, exceptionally, could include the participation of the minor in an advance directive.

The authors adopt the overall attitude of tolerance of these premortem interventions and correctly describe most of the ethical considerations that should be examined in these cases. However, this positive position is weakly discussed and lacks ethical arguments centered on the dignity of the dying person, focusing especially on their favorable position towards these types of interventions, and on the unquestionable benefit that is achieved after performing organ transplantation with optimal organs.

Reference

  1. Brierley J, Shaw D. Premortem interventions in dying children to optimize organ donation: an ethical analysis. Journal of Medical Ethics. 2016;42(7):424-8. Epub 2016/04/01.

 

 

 

 

 

 

 

José María Domínguez Roldán Med Phd

Bioethics Observatory – Institute of Life Sciences

Catholic University of Valencia Spain

 

 

In December 2015, an international summit took place in Washington D.C., convened by the United States National Academy of Sciences and the National Academy of Medicine, at which scientists, doctors, bioethicists and specialists in legal matters met to reach a consensus on the application of genome editing (see HERE) in humans, at both laboratory and clinical level.

As a result of this summit, a report was drawn up (see HERE) and has recently been published. The report tackles questions on the application of gene editing in humans, including the balance between the potential benefits and unintended harms, how to govern the use of genome editing, the incorporation of societal values into clinical applications and policy decisions, and respect for the differences across nations and cultures that will determine whether these new technologies will be used and how. One of the most relevant aspects of this report, however, is that it favors the use of genome editing techniques on the germ line, i.e. gametes and early embryos, although restricting their use only to the prevention of serious diseases and providing that there is no other alternative.

The risks of germ line genome editing are unpredictable, aggravated by the fact that the changes produced will be transmitted to offspring. An added concern is that their application to disease prevention could open the door to human enhancement or the production of designer children (see HERE), which would mean modifying our genome to make us stronger, taller, thinner, more intelligent, etc., which is known as transhumanism. In spite of all these ethical difficulties, this report is a further example of the fact that, even though there is no consensus among the scientific community regarding the advisability and safety of this application (see HERE ), the current tendency is to accept it, with the ethical difficulties that it entails.