Palliative care, personhood, the Image of God

Thursday, 21 June 2018  | Greta E.C. Wells

Last June, my dad, sister and I arrived at the hospital for a meeting. My mother had been admitted several days earlier on her 63^rd birthday with an infection. She also had terminal ovarian cancer. It was the beginning of the end.

We were so familiar with the oncology ward. Between March and June, mum had spent an inordinate amount of time there, only really coming home at most for a fortnight at a time before another complication would arise and she would have to be readmitted.

We were ushered into the part of the oncology ward where I had never been – a stark conference room with garish fluorescent lights. My 18-month-old daughter played under the table as the nervous doctor began the proceedings. He was British and he was only a few years older than me. As an oncology registrar, he no doubt shouldered the grunt work for mum’s specialist. I would later find out that he would go from this meeting to a 10-hour night shift at the public hospital, where he would probably deliver more bad news to patients.

In that moment, the grunt work involved asking us if we would let my mother die. They would treat the infection this time, he said – but then explained that treating infections would only prolong the inevitable, making things more and more uncomfortable for my mother. He suggested that, if something were to arise again, we should only treat the symptoms and manage pain.

Then he said something very peculiar. I don’t remember the exact words, but basically the suggestion was that mum’s physical and mental state had deteriorated to the point where she wasn’t who she used to be. She was no longer ‘really mum anymore’, and so it was acceptable to let her die.

I understood what the doctor was trying to say. There was no chance mum would recover and go back to her previous quality of life – and so, why prolong this current state? I appreciated his concern to alleviate suffering. However, I was jarred by the suggestion that mum wasn’t really mum anymore. In a microcosm of a second, sitting under those blaring sterile lights, I started to ponder what it means to be a person, made in God’s image.

Pastoral theologian John Swinton makes the point that, ‘[a]t heart, philosophical models of personhood tend to be used as ethical devices designed to enable the separation of one group of human beings from the rest of humanity . . . in working how best to resolve dilemmas and deal with difficult ethical decisions’.[1] In other words, we hold to the idea that we should fight for the well-being of people – but to be considered a whole human person one needs to meet certain criteria, often based on ‘what they are capable of doing, or what they don’t or can’t do’.[2] If someone fails to meet the criteria, their full personhood is questioned, placing them in a vulnerable (and sometimes deadly) position.

We see the fruits of this definition in broader society, with regard to people with disabilities and those in care facilities. This occurs in the perceptions and treatment of these individuals, but also in less obvious ways. We see it in the minimal remuneration and lack of social capital we bestow upon those who care for these individuals. We see it in the termination rates of those diagnosed with particular genetic conditions in utero. In a capitalist society geared towards profit and efficiency, no one should be surprised that individuals who cannot contribute significantly to the economy (or require more resources to function adequately) are valued less.

Yet, going back to Genesis, Swinton argues (with the help of Walter Bruggemann) that personhood is closely tied to the vocation assigned to Image Bearers: that we are co-regents under God, carefully tending to God’s good creation.[3] This has two implications. The obvious one is that we engage in the task of care-giving towards all of creation, including the Image Bearers within it.[4] Most Christians find this idea easy to digest. We build entire ministries around cooking meals, visiting the sick and helping the vulnerable.[5]

However, if humanity is to fully live out the task of care-giving, it means that we also have to be care-receivers. To be made in the image of God is to acknowledge that ‘[o]ur essential state as human beings is one of radical dependence’.[6] Of course, we are all in this position as infants, vulnerable and dependent upon others for our needs to be met. Yet, even if we happenstance upon a life without disability, all of us will fall ill at some point – and, if we live a long life, we are likely to require increasing care as we deteriorate through old age. Broader society may create ‘ethical devices’ around personhood as a means of differentiating between ‘us’ and ‘them’; yet, in reality, most of ‘us’ will end up being ‘them’ at some point.

Many of us struggle with this. We take great pride in being able to give, but struggle to receive, instead holding to the myth that to be self-made and independent is the ideal archetype. Yet, as Swinton poignantly notes, ‘to be in a position where one can only be the recipient of care is not to be in a place that is degrading or indicative of a loss of dignity; it is in fact to be in a holy place, to be part of a fundamental aspect of the human vocation to care for creation’.[7]

As I sat in that conference room, I began to realise that I could not base my personal response to this situation on whether or not mum was ‘herself’ anymore. Of course she was still a person – she was living out her vocation of God’s image as a care-receiver. And so our job as caregivers was to ensure that we responded by treating her with care and dignity. Ultimately, in this instance, we decided that it was uncaring and undignified to prolong suffering when the inevitable could not be stopped. So, that evening, we decided to make her as comfortable as she could be in this time of vulnerability.

Soon after, mum was moved to a specialist palliative care hospital, run by a Catholic organisation, where she had her own room with a private fridge, hooks on the walls for her own pictures and individualised air-conditioning. A trolley sponsored by some local hotels provided daily tipples for the dying, and volunteers provided regular hand and foot massages. The nurses were brilliant, and doctors were close at hand to adjust medications if needed. Mum was deeply known and cared for. She spent her final days in a place that was the imago Dei in action. When she died, she was prepared with dignity, and we were able to spend six hours with her, crying, laughing and reminiscing. It was a holy, almost liminal space.

Yet, she was one of the fortunate ones. In the Australian context, palliative care services are not adequate. In their most recent Workforce Strategy, The Australian and New Zealand Society of Palliative Medicine (ANZSPM) recommended a minimum ‘ratio of 1.0 FTE specialists in Palliative Medicine per 100,000 population… for a reasonable provision of service’, but then noted ‘that currently there may be half that number of specialists in Australia’.[8]

It is understandable that, in such a climate, debates around voluntary euthanasia come into play. Who wouldn’t want a quick end to suffering if palliative care services are inadequate in providing pain relief or dignity? However, as the Director of Palliative Medicine at St Vincent’s Sydney, Associate Professor Richard Chye, argues: ‘Australians want to die at home but need better support services to do so. Carers need respite and your postcode often determines access to services. These are the rights we are currently denied. This is what we should be getting up in arms about’.[9]

As Christians, it’s easy to be vocal about euthanasia as a controversial ‘hot topic’. It’s not particularly scandalous or popular to fight for better palliative care services. Several weeks ago in May, it was National Palliative Care Week. The theme was ‘what matters most’. It is telling that the only Christians I saw posting on social media about this were those working in nursing home contexts. Yet, if we are called as Image Bearers to be faithful care-givers and care-receivers, we should probably acknowledge that end-of-life care is one of the crucial places where both of these roles have a chance to be played out meaningfully – and we should advocate for better resources in this area.

For many of us, acknowledging this is difficult, because it forces us to face our own eventual mortality and interdependence with others. However, if we want to enter the fullness of God’s vocation for humanity, we have to accept this reality. We need to turn away from an attitude of self-sustainability and instead embrace the notion that there can be dignity in fragility. Hopefully, this will lead us to be aware of the broader systems that facilitate care in times of fragility – and to advocate loudly when these systems are inadequate.  

Greta Wells is a Lecturer in Pastoral Ministry at Alphacrucis College, Sydney. Her research interests include the intersections of mental health and religion, as well as the potential of Pentecostal spirituality for ageing Australians. She is married to Mark and they are parents to a wonderful toddler.

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