End-of-life in current bioethical debate: interview with Susana Magalhães

We propose an interview with Susana Magalhães, Research Integrity Officer presso l’Instituto de Investigação e Inovação em Saúde – i3S (Universidade do Porto). 

Q. What are the main issues of the current debate on bioethics, in your opinion?

SM. Nowadays, the main issues in Bioethics are those that have to do with the distribution of natural and human resources under the principle of equity in a world that is facing population growth and ageing societies, dehumanised healthcare and dilemmas related to end-of-life care and genetics – and here I would like to stress the ethical issues underlying genome editing. Biotechnology and its limits are currently at stake mainly due to the binomial issue of treatment-cure versus enhancement. There is frequently a blurred line between treating and enhancing and the risk of slippery slope is real.

I believe that we need to address the meaning of progress: is it a moral obligation? I would like to refer to a very interesting article written by Daniel Callahan a little time before his death: Bioethics and the future: can progress be tamed? Callahan argues that religious faith has been replaced by faith in progress. Therefore, there is little room for its harmful and negative aspects. Throughout bioethical history, progress has been questioned: that was the case with the recombinant DNA experiments, that raised concerns of possible biohazards, leading to the Asilomar Conference and its moratorium on this type of research until the risks could be clearly defined and controlled. More recently, in 2015, the National Academy of Science, Medicine and Engineering issued a document with three recommendations focused on the technique of CRISPR-Cas9:

  • basic and pre-clinical research should continue;
  • the editing of somatic cells is supported;
  • gene editing for human gametes and embryos is considered unacceptable.

I agree with Callahan when he says that we should address the meaning of progress, because the words we use matter and the first step of bioethical deliberation should be to clarify terms and concepts.

End-of-life care is another area of concern for Bioethics due to the power of technology to prolong our lives and to assist us at end of life.  What are the limits? Should we draw lines related to what is the appropriate treatment, and when should technologies be suspended and let people “live their death”? I believe Bioethics is not about stopping progress. Rather it is about reflecting on how we use our knowledge and for which purpose we use it; it is about humility, as Sheila Jasanoff reminds us:

We need disciplined methods to accommodate the partiality of scientific knowledge and to act under irredeemable uncertainty. Let us call these the technologies of humility. These technologies compel us to reflect on the sources of ambiguity, indeterminacy and complexity. Humility instructs us to think harder about how to reframe problems so that their ethical dimensions are brought to light, which new facts to seek and when to resist asking science for clarification. Humility directs us to alleviate known causes of people’s vulnerability to harm, to pay attention to the distribution of risks and benefits, and to reflect on the social factors that promote or discourage learning.

Policies based on humility might: redress inequality before finding out how the poor are hurt by climate change; value greenhouse gases differently depending on the nature of the activities that give rise to them; and uncover the sources of vulnerability in fishing communities before installing expensive tsunami detection systems. [1]

Q. How does narrative medicine enter this debate? What are its main challenges and possible evolutions, in your opinion?

SM. I believe that the narrative skills required by Narrative Medicine (NM) – such as attention, representation, imagination, the pursue of meaning, the capacity to set up connections, to build a plot, curiosity, flexibility of thought, openness to the unpredictable and the unexpected, the capacity to move forward, backward, and sideways – are essential, not only within healthcare, but also for bioethical deliberation.

Narrative skills required by NM are the same skills promoted by narrative bioethics, which is growing, because the more science and technologies advance, the more aware we are of the need to focus on context. Moreover, NM – and ISTUD is a very good example of what I am going to say now –, whether we are talking about practice in healthcare or research, provides a useful source of data, focusing on the individual rather than only on statistics and on the system, which are generally of concern for managers, politicians, and decision-makers. NM has a role here, because it reminds us of the value of integrity and of the need to use holistic approaches in ethical deliberation; NM actually requires us to act and behave in such a way as to respect this wholeness, whether we are talking about the respect for human beings or for the goals of good science.

I think that the big challenge for NM is to persuade politicians, decision-makers, and health institutions managers that this approach can actually safeguard the quality of care and a fair and equitative use of resources. When we ponder on the ethical issues of Artificial Intelligence (AI) and Machine Learning, we are faced with the issue of having human beings replaced by robots. Only by promoting the capacity to set up relationships that are not programmed, will we be able to preserve the human trace of humanity. This is the reason why NM must work hand in hand with ICT, which can contribute to the implementation of this approach in healthcare.

Q. Why is it crucial finding a consensus on definitions and concepts used in palliative care and end of life fields? What are the risks of confounding these terms?

SM. Generally, I would say that this is true not only for palliative care and end-of-life fields, but for all healthcare fields. Only a holistic approach to bioethics allows us to careful revisit the terms and concepts used in healthcare, and in particular in end-of-life care. The need for clarification is justified by the fact that the words we use matter and make a difference: language shapes the way we see reality, the way we act upon it and within it. Terms like “medical futility”, “persistent or obstinate therapy”, “ordinary or extraordinary means” have to be clarified, if we want to use science and technology for the benefit of people and not to harm them.

The International Association for Hospice and Palliative Care (IAHPC) have recently issued a definition of palliative care as “the active, holistic care of individuals across all ages, with serious health-related suffering due to severe illness, especially for those near the end-of-life. However, it is not always for those near the end-of-life. If we do not clarify this aspect, palliative care might go on being perceived as a supplementary tool, i.e. as a resource applied only at the end-of-life, which is clearly insufficient. In fact, palliative care should start at the diagnosis of a severe illness that has no cure and it may desirably last for years. IAHPC have not only issued a very clear definition of palliative care with multiple sub-topics, but their concern for the impact of terms and concepts led to the edition of a glossary of terms, so that people could understand this field better.

In multidisciplinary healthcare teams, care should always include a discussion of the terms and concepts that are used by the members of the team. If the person being taken care of realises that the same terms or the same concepts are used differently, the trust bond between patient and healthcare professionals may get broken.

Q. What does “self-determination” mean in the context of care?

SM. Autonomy implies framing the Will within one’s project of life and this framing includes the other who should always treat him/her not only as a means to achieve an end, but always as an end in himself/herself. Self-determination is focused on the individual preferences regardless of the others whom he/she relates with. Autonomy requires that a person is able to understand the information about his/her health condition; is aware of the different elements of his/her illness, including not only the disease but also the impact of it on one’s own life; is able to communicate his/her concerns, doubts, needs and to make decisions and express them freely.

I believe that we need to improve health literacy so that we can give everyone the power to understand his/her illness, disease and sickness. Every person should have the right to refuse treatment, to understand what is being done, what kind of medicine he/she is taking and be able to integrate his/her aims within those of the proposed treatment.

Autonomy is important, but I would not be in favour of having health professionals washing their hands and saying “You are autonomous, you decide”. That is why I said that autonomy always includes the Other in its exercise. I believe the right term is Relational Autononomy and this principle together with Vulnerability and Responsibility are the three pillars of healthcare:

Focusing only on autonomy renders invisible the fragility and vulnerability of the human condition, which means we all require care and respect. For that reason, a more complex concept of human autonomy is necessary, one that includes human vulnerability. In addition, it is important to realize that the focus on an unmodified principle of autonomy generates an individualistic and self-referential manner of understanding relations with others, which is especially problematic in the clinical context.(…)  In the context of healthcare, relational autonomy implies more emphasis on the how healthcare professionals create conditions to facilitate and support the patient’s (and sometimes family) decision making process, instead of the patient’s right to decide, without considering the relationship between the health care professional and the patient when making decisions. While autonomy principle is understood as an occasional moment that occurs when patients need to consent or accept a health care treatment or practice, relational autonomy is the result of a process in which the patient and the family is involved. [2]

Q. In the last two the story of the activist Marco Cappato is at the centre of the Italian debate: in February 2017 he was denounced for having accompanied Fabiano Antoniani, remained quadriplegic after an accident, to access assisted suicide in Switzerland – in Italy, assisted suicide is illegal. Last September, the Italian Constitutional Court examined his case, finally declaring him not punishable, and inviting the Italian Parliament to start working on a law on this topic. In your opinion, what should be the role of jurisprudence regarding the choices people make on their death? At the same time, what are the challenges for the healthcare provider?

SM. Without focusing specifically on this case, I would say that this is a very sensitive issue. I do not think law will ever be able to solve similar situations. What is at stake here is whether the right to life entails the right to die. There is also another question, which is whether the right to preserve life is the same as the right to preserve the quality of life. Preserving life does not mean that we are preserving the quality of life. Assisted suicide and euthanasia are different, but in the end, they pose the same questions to everyone. Euthanasia requires that the person is capable to understand what is happening to him/her, to evaluate the environment, the consequences, and to ask another person to kill him/her. Assisted suicide requires asking another person to provide the means to put an end to one’s life. In my opinion, law cannot cover all the possible different circumstances of every single person and it cannot address the anthropological aspects of this issue. I also think that there is only active euthanasia, because if the person is not asking for it, it is homicide. Words do matter.

The problem is that we tend to highlight cases like the one described above, that have already happened and about which we cannot do anything any longer. In healthcare, discussing euthanasia and assisted suicide is like building a house and starting it with the roof instead of the walls. The question that needs to be addressed is why people think about putting an end to their life when they are ill. First, we have to be sure that the person has received all the care that he/she wanted and desired, and we know this is not true in most of our healthcare institutions. Many people want to die not because they do not want to live, but because they do not want that kind of life. No law will ever give an adequate answer to what is suffering at the end-of-life. Only compassionate, narrative-friendly, relationship-based healthcare can actually attend to those who suffer and to those who care for them.

[1] Jasanoff, S. Technologies of humility. Nature 450, 33 (2007) doi:10.1038/450033

[2] Janet Delgado. 2019. “Re-thinking relational autonomy: Challenging the triumph of autonomy through vulnerability. BIOETHICS UPdate 5 (2019) 50–65)

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