My grandmother has dementia. No, I can’t really say she is “suffering from” or “suffering with” it. She just has it, like an extra limb, or a tattoo. She forgets conversations almost instantaneously, and has a child-like sense of wonder as she asks “really? You teach nurses? Well that sounds like a very nice job. Does it pay well?” Then, a minute later, “so, what are you doing at the moment, Laura?” Granted, she looks perplexed as the chaos of the family swirl around her, but it is not suffering that I sense, more a bewilderment.
But at times her dementia causes her profound distress. She came to stay with us last year for a few days, it was her first trip away from home for some time. I awoke at midnight to hear her walking around, and when I met her in the hall, she looked terrified. She didn’t know who I was. When I reminded her, she said “oh dear, something terrible has happened. I have lost my memory.” Eventually settled into bed, I lay beside her until she fell asleep, but not before she said “this is awful, Laura. I wish I could just not wake up tomorrow. I know that’s a terrible thing to say, but this is the worst thing ever” and she cried. In the morning she was wide eyed and smiling again as she said “ooh, is this your house, Laura? And tell me, what is it you do these days…”
Suffering seems to be part of her experience of living with dementia. But her experience is not consistently characterised by this suffering, nor is her suffering quantifiable in any way. Thankfully, and unusually in a woman of her advancing years, she has no physical pain or other troubling symptoms. But when her suffering does arise, it is unmistakeable and tangible. The nature of non-physical suffering is elusive; like the breeze, you know it is there, even though you can’t see it. Indeed I think that defining suffering is neither possible nor useful, and an attempt in 2011 by Patricia Boston to conduct a comprehensive literature review identified 56 different definitions of existential suffering.
My own favourite perspective on suffering comes not from the palliative or sociological literature but from Buddhism, where suffering is simply defined as being an inevitable part of existence. We are all witness to the same essential truths of human existence, that suffering is inevitable. We are born, we become ill, we die. All is impermanent, all is change. The Buddhist perspective is that the source of suffering arises from attachment, craving and aversion. In other words, we try to hold on to that what we currently have, we crave to have things/people/relationships/roles which we do not have, and we do not want the things that we have (illness/poverty/stress). Contrary to how it might appear, this is not a pessimistic view. Buddha observed that by increasing our awareness and equanimity we are able to see the nature of existence as it is, rather than as we would like it to be. As such, in turning towards suffering rather than seeking to avoid it, we work towards an acceptance of suffering and a loosening of the hold that impermanence and attachment have upon us.
In palliative care, suffering is frequently spoken about as if synonymous with pain. Cicely Saunders’ first conceptualisation of the “suffering” which palliative care aims to “prevent and relieve” was depicted in terms of total pain, with physical, social, spiritual and psychological elements which could not be separated. Suffering in one area of these domains both influences and potentiates suffering in another. Eric Cassell challenges us to distinguish between suffering and physical distress, arguing that suffering is only meaningful in the eyes and experiences of the individual who suffers. He claims we can never know anothers’ suffering, but we can nonetheless recognise and validate it, and allow it to form a lens through which we can try to understand a persons’ unique experience. Irving Yalom describes four elements to existential suffering:
- Death (which leads to anxiety about ceasing to exist)
- Freedom (which leads us to being able to make choices)
- Isolation (the gulf that exists between us and others)
- Meaninglessness (which forces us to seek meaning and attempt to make sense of our lives and our deaths)
There are differences between professionals’ views on what constitutes suffering, particularly spiritual or existential suffering. Certainly, suffering can refer to a range of human experiences unrelated to physical pain, as in the case of grief, and equally one can experience extreme pain but not describe it as suffering, as in the case of childbirth (though some may wish to dispute this!). Rather than attempt to synthesise definitions, it is perhaps more helpful to consider suffering as a dynamic, deeply personal and emergent process.
Most nursing and medical undergraduate curricula make some kind of reference to Maslow’s hierarchy of needs, which describes five hierarchical, motivational requirements for human fulfilment. Within this, “basic” needs such as physical comfort, safety and food are distinct from “growth” needs such as self-actualisation, or meaning-making. The theory is that one can only progress towards self-actualisation once the basic needs are fulfilled. Of course, there is intuitive sense here; I could not imagine trying to consider the meaning of my life whilst racked in pain. We have evolved to avoid painful and unpleasant stimuli and in such as situation this takes precedence. However, I do wonder whether by insisting we pay attention to physical comfort, shelter and nutrition needs before considering relational, psychological or spiritual needs, this model perpetuates the dominant biomedical paradigm in the health service. In my experience, peoples’ needs often manifest themselves as complex, messy and contingent. To illustrate the absurdity of attempting to separate them, consider this “now, Mrs Peters, we will just finish giving you your medicine and a cup of tea, then once you are comfy we will find a psychologist to come and have a little chat with you. After that if you’re still not quite right, we can refer you to a chaplain”. Of course, this is ridiculous, but in essence it is not so different from the way in which suffering is prioritised within many clinical areas. Let’s look first to see if there is a neat physical cause, which can be managed with this pill, or that patch. If not, we will begin to consider psychological issues. When all else fails, we may tentatively begin to wonder whether this might be “spiritual” pain. With each consecutive challenge in “managing” the pain, we find ourselves more and more adrift. Suddenly the neat algorithms do not offer a panacea.
Some healthcare professionals may minimise or ignore those aspects of patient suffering that they do not know what to do about. Such behaviours as distancing and blocking could be attributed to this; these are not behaviours of uncompassionate healthcare professionals, but the defensive behaviours of real and vulnerable human beings faced with what is perceived as insurmountable suffering.
By paying attention to the multiple forms of suffering that a person may be experiencing, and not just prioritising their physical needs, we are able to enrich their dying experience immensely. We do not need to wait until we have attended to all of their physical needs; when (and if) this is achieved, they may be too close to death to engage. Attending to suffering does not mean “diagnosing” it, or “treating” it. Harvey Chochinov points out the connection between maintaining dignity and preventing suffering. The simple things are often cited by families and carers as making the greatest differences to peoples’ dignity, and hence their suffering, at the end of life. Alan Kearney suggests that we distinguish between surface-work and depth-work when attending to non-physical suffering, and points towards those simple actions which enable reconnections with important aspects of a person’s life world. Dr Balfour Mount identifies four connections that we can help to nurture: bonding to self, bonding to others, bonding to the phenomenological world, and creating ultimate meaning. He suggests ten ways in which we can support dying people in their suffering:
- Identify sources of meaning, positive and negative, both from before and during their current experience (…”what gives you a sense of purpose?…)
- Explore the possibility of creating a life narrative/ legacy (…memory boxes, videotape…)
- Explore sources of anguish, both before and during their current experience
- Attend to dreams; these are clues about sources of distress
- Identify sources of connection, both before and during the current experience
- Minimise uncertainty
- Identify and permit expression of fears
- Identify ego defence mechanisms that may be at play, such as denial and distancing
- Promote a calm atmosphere characterised by efficiency, company and caring
- Promote activities that bring the person into the present moment, such as mindfulness
Finally, attention to oneself, and the impact of witnessing existential suffering, cannot be over-emphasised. Providing compassionate care means opening oneself up to the inherent psychological risks. One could just as easily examine Balfour Mount’s list above as some very sound advice for busy healthcare professionals who witness suffering and dying in the course of every day, often far more than many people see in a lifetime. Re-read the above list and ask yourself how you can resolve to support yourself in this way over the next week. And tell me about it!
Til next week.