Turning towards suffering

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.

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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.

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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:

  1. Death (which leads to anxiety about ceasing to exist)
  2. Freedom (which leads us to being able to make choices)
  3. Isolation (the gulf that exists between us and others)
  4. 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:

  1. Identify sources of meaning, positive and negative, both from before and during their current experience (…”what gives you a sense of purpose?…)
  2. Explore the possibility of creating a life narrative/ legacy (…memory boxes, videotape…)
  3. Explore sources of anguish, both before and during their current experience
  4. Attend to dreams; these are clues about sources of distress
  5. Identify sources of connection, both before and during the current experience
  6. Minimise uncertainty
  7. Identify and permit expression of fears
  8. Identify ego defence mechanisms that may be at play, such as denial and distancing
  9. Promote a calm atmosphere characterised by efficiency, company and caring
  10. 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.

@heblau

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3 thoughts on “Turning towards suffering

  1. Thank you for this beautiful perspective – I am writing a programme today called ‘Leading with Compassion’ and on a brief break have found my way to your insights and perspective.

    The ‘impact statements’ that are guiding my design are…

    I care for myself deeply
    I make space for others to grow
    I lead with courage for compassion

    Our work here may resonate….

    TED x Talk here on Closing the Compassion Gap through gaining a ‘glimpse of our inner beauty’

    Thank you again and Happy Eater!

    Andy

    1. Hi Andy,

      Thank you for your kind comments and apologies for the delay in responding to you. I really enjoyed listening to your TED talk and it would be good to keep in touch – I think there is a great need for collaborative and creative writing and research on compassion, and I am just getting a sense of the fantastic work that is being done by the virtual community out there. Self-compassion for people working with suffering doesn’t appear to be a priority for many healthcare services.

      Laura

  2. Turning Towards Suffering

    What do we mean by compassion? Definitions vary, we need to be careful. For example, the blogger ‘Grumbling Appendix’ describes it as an upsurge of heightened emotion which health professionals feel for certain patients – therefore, it is not something which is controllable or consistent. He/she talks about respect, kindness, empathy and good communication skills as being more important attributes for professionals to display routinely: I think I agree, except that, arguably, those are exactly the things which the word compassion is used to describe! So language is potentially dangerous and confusing. (The current rhetoric and debate about compassion in nursing demonstrates this). In your first blog, you described compassion as consisting of both recognition of another’s suffering and an appropriate response to it. I prefer definitions like this, in which it becomes a set of behaviours and values rather than an emotion: what Aristotle called a telos, a fundamental aim of our practice (thanks to Schwartz & Sharpe for introducing me to this concept). This way of defining compassion allows us to promote it as a normal, expected part of healthcare, without it sounding too fluffy.

    I think we all have the capacity to show compassion, albeit to varying degrees. I guess the extent to which any of us (professionals or not) demonstrate it in a certain situation is enhanced or diminished by our feelings about the particular people involved and about the context as a whole. I suppose it is also continually being balanced against our powerful instincts for self interest and preservation. I am interested to understand why some health professionals more readily show compassion than others in their daily work and to know which factors are most influential in determining how compassionate we are? Is it our genes; our upbringing; our own life experiences; our education; or the role models we encounter? In particular, which are most important for health professionals? And how far can we expect education and training to enhance compassionate behaviour?

    In an interview, Joan Halifax cites two reasons for having chosen to spend her life working in palliative care: her own experience of serious illness when she was a child, and the example of her grandmother who cared for many people at the end of their lives. When we suffer, we suffer in a unique way, which no one else can ever share or fully understand. We can try to imagine another’s perspective and to empathise with their experience, but even our ability to do this is surely limited unless we have experienced similar things ourselves? So it is easy to understand how Joan’s experience motivates her and probably increases her capacity for compassionate empathy.
    For Balfour Mount, two key attributes of good palliative care are ‘accompanying’, ie having the courage and resolution to stay with someone in their suffering, even when we feel powerless to help; and the empathy which comes from recognising that ‘we are all in this together’, that we all eventually become ill and die. These attributes resonate strongly with me. And again, he cites his own experience of having two cancers as important influences in his work.
    I have been reflecting on my own motivations for practising medicine (and palliative care in particular). I was raised in a very loving, quite devout Catholic family with a strong ethos that all individuals are of great and equal worth; and of us all having a duty (telos?) to love and serve others, even if this involves self-sacrifice. I have long since lost any belief in supernatural interventions and in the historical accuracy of biblical texts. Nevertheless, a couple of weeks ago I found myself drawn, as I do every year, to attend a Maundy Thursday liturgy. This service remembers the events of the Last Supper, when Jesus shared a meal with his friends on the night before his arrest and death. There are two parts of the liturgy which I find profoundly moving and which explain my habit of still attending. Prior to the meal, Jesus is reported to have insisted on washing the feet of his friends, a task normally performed by a lowly servant. He does this in spite of their protests, as a wordless demonstration of simple, humble care for them. During the liturgy, the foot washing is re enacted by the people present. After the meal, Jesus is said to have asked his friends to accompany him to the garden of Gethsemane to pray whilst awaiting his arrest. They try for a while, but then lose courage and abandon him. The liturgy concludes in silence, with the congregation remaining to meditate in the church – traditionally, some would remain in church all night, or would organise a rota with others (I remember my parents doing this) to return at different times during the night to maintain a vigil, symbolic of the wait in Gethsemane.

    The reason I have explained at length about this liturgy is because I realise what powerful drivers the values of service and ‘staying with’ have been throughout my life and career – and it seems important to recognise that they originated here in my upbringing, not in my medical education. In the context of professional caring a psychotherapist, Patrick McCurry, wrote that ‘a lot of our motivation can be unconscious, but the more we can make it conscious the better work we can do’. That feels true to me. For many of us, I think our upbringing, life experiences and the inspiring role models we have met (if we are lucky) are more important than our formal education in shaping our practice. And I think that often, our capacity to be compassionate increases as we accumulate losses and experiences of our own. As progressively fewer young people in our society are brought up within a formal religious or spiritual framework, I wonder whether they will enter the health professions with a sufficiently strong telos of compassion to see them through to the time when they have experienced significant suffering of their own? I hope so. Either way, maybe important aims of education should be to help us make conscious our motivations for choosing to work in healthcare; to help us really imagine how it feels to be suffering from serious ill health; and to nurture our own natural instincts for compassion through ensuring an there is an unequivocal culture of compassion in our work and learning places?

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