Euthanasia, Dignity and Me
by Daniel Pask
What follows is a revised and expanded version of a talk I delivered to a group of students from the University of Sydney. I was on a panel with Gerentologist Dr. John Obeid and Jeremy Bell, philosopher and Monash Scholar. I beg your indulgence in terms of referencing style; if any mistakes in referencing really bother you, please let me know!
I'm a 44 year-old with Spina Bifida Myelomenengocele. This is the most common form, and one of the most severe. I also have hydrocephalus, which is excess cerebrospinal fluid around the brain, that is drained using a shunt. As an infant, when doctors found there was nothing more they could do to help me, my mother took me home, where it was thought I would die. But here I am.
My involvement with combatting euthanasia began after hearing about the effects of the Groningen Protocol, introduced in the Netherlands in 2005, which permitted pediatricians to euthanize infants. From its introduction to 2010, 22 infants, who all had Myelomeningocele, were killed. They had a disability, not a terminal illness. All were given a paralytic agent before death, to stop them moving and thus alleviate the suffering of their parents who had to witness their deaths (Caitlin and Novakovich, 2008 in Kon, 2008). This would have induced terrible pain.
These children were all considered to meet four criteria in the Groningen Protocol. I will give two of these, "Hopeless and unbearable suffering" and "Predicted Lack of Self-Sufficiency", special attention, showing that they run counter to dignity.
I have had many operations over my time, and can thus testify to the improving treatment of, and prospects for people with Spina Bifida, from the patient's perspective in a medical model. I have also been at the forefront of change from a social perspective. For instance, I was the first child in Canberra, and possibly in Australia, integrated into the mainstream education system from a "special" school in the 1970's.
Euthanasia laws permit killing on the basis of perceived physical suffering, whereas for people with disabilities, the real anguish arises in a large part due to a mix of social, financial and emotional factors. Not only are medical professionals prognoses often wrong, as in my own case, but they also often veil discriminatory attitudes towards people with disabilities. This discrimination is based on the perception that our quality of life is poor and that we are better off dead.
According to Alexander Kon (2008), writing about the Groningen Protocol, healthcare providers, the general public, even parents overestimate the difficulties of having a disability. They undervalue the lives of those of us with disabilities. Uncritically accepting euthanasia would condemn many to death whose genuine sufferings were nonetheless bearable.
Looking at specific criteria of the Groningen Protocol, we see how these articulate an erroneous view of disability in general, and Spina Bifida in particular. The first is "Extremely Poor Quality of Life (Suffering) in terms of Functional Disability, Pain, Discomfort, Poor Prognosis, and Hopelessness". The meaning of hopeless and unbearable suffering has often been debated and questioned, never specified. What's more, if this is considered to mean "acute, chronic pain that cannot be overcome by modern means", then infants with Spina Bifida seem never to meet the criteria.
As of 2010, no studies had been undertaken evaluating patients with Spina Bifida using appropriate pain scales. If no studies had been done showing unbearable pain was a factor in MMC, why is it included in the Groningen Protocol as a criteria? For the record, the most pain I have had, on a consistent basis, was from spasms down my left leg, following spinal surgery about twenty years ago. The pain was alleviated with half a tablet of Valium. Two days went by in a haze. I never wish to sleep with the Prince again.
"Predicted Lack of Self-Sufficiency", another criteria, is also not defined clearly, leading to deaths on the basis of speculation. The expectation of the Groningen Protocol's authors, and of many others, is that children, adolescents and adults with Spina Bifida - and other disabilities - face an unacceptably low quality of life (whatever that may be interpreted to mean!). The evidence about people with Spina Bifida and people with other disabilities such as Locked-In Syndrome (Laureys et al., 2005) is that we score just as well on quality of life scores as those without disabilities.
For my own part, my quality of life is most abundantly clear. At the time of writing, I am not ill, and rarely am. Even if were sick, this would require care from my wife, family, the medical profession and people like chemists. This community involvement would actually enhance the quality and meaning of my life. But I also contribute by way of being a student, employee, consumer, tenant and so on.
As mentioned earlier, there is no way that anyone could have predicted how meaningful and dignified - otherwise - my life would become, but that never would have been sufficient to justify my death. Only an acknowledgement of the futility of adding further, speculative and burdensome treatment justified how my life was managed in the beginning.
The point I am helping to make, through adding my life-long experience to the well-spring of others' is to show that these Groningen Protocol criteria are scientifically invalid. That is, they are unsupported by evidence. Indeed, they run counter to Evidence-Based Medicine (Barry, 2010). This is part of a wider problem with criteria set for euthanasia generally - they are vague. They are open to interpretations that ensure desired outcomes. In moving patients towards those outcomes, social and other factors influencing medical professionals' decisions are not taken into account. Thus the way is prepared for people to die who should in stead continue to get support to live.
Another term, which has been used to both support and oppose euthanasia is "dignity". Not unlike the terms of the Groningen Protocol, some have declared so vague as to be unworkable. The word has been hijacked by those wanting assisted suicide or euthanasia, insofar as it appears in the titles of many of the bills they champion.
Three versions of dignity have gained prominence in human history. I would say, along with Carlo Leget, co-founder and co-chair of the European Association for Palliative Care task force on Spiritual Care in Palliative Care (2013) that separately, they are only a partial defence in terms of protecting against euthanasia. In cooperation, however, they may nourish each other, and provide a defense against practices like euthanasia and assisted suicide that attack people on society's margins.
First we have dignity as public recognition of our position within society. This is neither permanent nor stable. Those in power have the ability to confer or withhold it. This social dignity depends for its sustenance on a group of other people. One difficulty, which I and other people with disabilities find painful, is that our relative social isolation means we have fewer people to sustain the sense of having a position in society. Another problem for us, especially if we have communication disorders or impediments, is that it is relatively difficult to have our status acknowledged by groups of people who "matter".
Second, we have the notion of intrinsic dignity, one that is in our very nature. It would seem to be pretty stable. But actually, it may only be as enduring as the credibility or acceptance of authorities like the Church, or philosophers proposing this view. This is the problem that many Right to Life groups face when confronting euthanasia and so on.
Thirdly, subjective or experienced dignity, a recent invention, depends only on what individuals say they feel. It is like a glass that can be filled up with whatever you like, when you like. It is not hard to imagine, in the light of the subjectivity of Groningen Protocol criteria, which reflects the nature of other Dutch euthanasia regulations, that 62% of reports to the Regional Review Committees in 2006 made some reference to loss of dignity. It was this subjective, individual and indefinable (postmodern?) beast they were talking about.
All these concepts of dignity are only as good, as lasting as the practices or institutions that created and maintained them in the public sphere.
Perhaps a more authentic, life-preserving understanding of dignity exists, that is not forced to fit predetermined categories or frameworks exists, that goes against the grain of euthanasia and assisted suicide laws.
Well, it does. Carlo Leget proposes just such a model, which I believe can be seen from the perspectives of a wide range of people, perhaps all, not only those receiving Palliative Care, which is Leget's original viewpoint.
It starts with the meaning of dignity that people, especially vulnerable people, such as those with disabilities find when they recount and share their life experiences with those interested in understanding their viewpoints. So it goes without saying that to be successful, this public interest requires further nurturing.
It then analyses the quality of the people's caring relations with professionals, close family and friends, and others, even pets, who need feeding or exercising. So, examining my own example, I currently enjoy good relations with family, and these are most responsible for the qualities, virtues and attributes that make the person I am, above and beyond being simply human. The friends that I have had throughout life nurture my personalities and are involved in the experiences outlined in the first stage. They are a help in bearing life's difficulties, and celebrate my achievements.
Professionals include the doctors, nurses and therapists, and also the teachers, who helped me acquire the raw skills and abilities needed to function in life. Most have acknowledged my humanity to various degrees, but most have also done things that have, from time to time, been painful, frustrating, degrading or discriminatory. My thoughts about these types of people is decidedly mixed. For example, there was the spinal surgeon who inflicted pain by hanging me up from the armpits to see the extent of my scoliosis and who took away the dignity of my name by deliberately mispronouncing it. As a child at the time, I was unsure about how to communicate my dislike of his ways. Later there was a nurse, who, when I was suffering and had had brain surgery, took such loving, respectful, friendly care of me, including good-night kisses, that I regretted not feeling well enough at the time to have taken the possibility of a relationship further.
People who have come from time to time to help clean my apartment, fix my scooter and other things have given opportunities to apply their skills and talents, adding to my wellbeing. I, in turn, add to the general wellspring of gratitude, and contribute economically to their welfare.
Finally, Leget's model of dignity focuses on the person's social status, in the broadest sense of being a member of a community. I am a more or less active member of several communities, all of which are more or less prominent in my conscience as the days, weeks and months pass. Today, I may visit the supermarket, where I meet the friendly owner, who is happy to see me. I reciprocate the smiles of fellow customers, joining their efforts to put dinner on the table for those at home. Tomorrow, I may call the landlord on some maintenance or rental matter, and be reminded that I am one of many sharing the burdens of keeping up a home. The community of librarians at the library I work at have built up my skills, which are needed to answer requests for all kinds of materials from people around Canberra, Australia and the globe. I am occasionally reminded, via posts on social media groups I belong to, that others with disability often lack the kind of dignity-enhancing connections that I have made. I hope not to take them for granted, and to make the most of them.
Our communities may be small or large, many or few. They may be so spread out as to need a car or public transport to reach out to them, or small enough to traverse on foot. Whatever the case, these are the environments and people who contribute to and gain from our unique sense of dignity, which accumulates with time and experience, however brief or humble.
This kind of dignity, starting simply from membership of the human family, grows organically through sharing similar life-experiences equal to others. Participating in relationships with people and naturally acting in a community also play their part. This sense of being human and thus having worth is inter-subjective, upheld by people who are, and have been ininterrelated caring relationships. I believe this kind of dignity is closely attached to authentic compassion, which is suffering alongside others, recognising and sharing in this unavoidable aspect of being human.
I have shown how criteria given for permitting euthanasia, especially infants with Spina Bifida are invalid, in the light of evidence of people with disabilities' satisfaction with life. The use of the term "dignity" as it is widely understood in two senses is also unhelpful to efforts to prevent doctor provided or assisted death. A focus on dignity understood from the perspective of broad community relationships will, I believe, be effective in tearing down the edifices of euthanasia and assisted suicide.
Daniel spoke on behalf of LivesWorthLiving at the 2015 HOPE Symposium in Adelaide.
Kon, A. A. (2007). Neonatal euthanasia is unsupportable:the Groningen protocol should be abandoned. Theoretical medicine and bioethics, 28(5), 453-463.
Laurens, S., Pellas, F., Van Eeckhout, P., Ghorbel, S., Schnakers,C., Perrin, F., â€¦ & Goldman, S. (2005). The locked-in syndrome: what is it like to be conscious but paralyzed and voiceless?. Progress in brain research, 150, 495-611.
Barry, S. (2010). Quality of life and myelomeningocele: an ethical and evidence-based analysis of the Groningen Protocol. Paediatric neurosurgery, 46(6), 409-414.
Leger, C. (2013). Analyzing dignity: a perspective from the ethics of care. Medicine, Health Care and Philosophy, 16(4), 945-952.