Almost ten years ago I wrote a short comment about spirituality for the journal Palliative Medicine.[1] Perhaps naively, I was trying to encourage a scientific approach to the exploration of, or perhaps promoting a scientific explanation for, the origins/source/nature of spirituality. A search of the literature at the time and conversations with colleagues were not very helpful to my quest. While those I spoke with felt that they could assess whether their patient was, or was not, in a state that they could label as spiritually distressed, they attempted to explain it in very different ways and there was no sense of a single understanding.
Although over 40+ years as a doctor I have managed countless patients who were spiritually distressed in some way or another, I had not felt the need to give it further analytical thought, up to now. It seems to me that, long ago and irrespective of our individual beliefs, those of who work in palliative care realised that we did not need to define spirituality to provide our patients with individualised spiritual care on their terms. We tacitly agreed simply to just get on with being effective for our patients through the provision of individualised whole person care.[2]
The invitation to consider the topic of spirituality again and write this comment has been a moment that might be compared to the scene from The Hitchhiker’s Guide to the Galaxy where the very old men stood in front of the enormous computer to which they had previously posed the question,
“What is the meaning of life, the universe and everything?”
Now, millions of years later, the computer had summoned them back to hear its answer.
“The answer to the question, ‘What is the meaning of life, the universe and everything?’ is, FORTY-TWO”,
and then suggested they needed a larger and more powerful computer.
I don’t have a real answer either, but perhaps I can offer my perspective founded in my conversations with numerous patients and their families.
Perhaps the years that my previous ruminations on spirituality have lain fallow, like an unused vegetable patch in some corner of the garden, have provided fertile ground for a new approach. My appreciation of the spiritual has re-emerged as something much more accessible, utilitarian and perhaps universal.
Patients are referred to me as a palliative care doctor because they have a physical illness that is likely to cause them to die in the not too distant future. Often, they complain of distressing physical symptoms (pain, nausea, dyspnoea, constipation etc. etc.). When their symptoms are not satisfactorily controlled, patients are also more likely to experience emotional distress. They may feel powerless because their disease has come to dominate their experience of their life, and they may have become less able to engage in the social interactions that are important to them.
Some patients, and their families, focus all of their energy and their attention on their disease and its treatment to the exclusion of the other essentials of a balanced life. When their disease becomes the dominant theme of their life, its treatment stops being a means to an end and becomes an end in itself. I remember asking a young patient nearing her death after decades of dialysis why she wanted to continue on dialysis. She replied,
“So I can stay on dialysis.”
When we have been able to exert sufficient control over symptoms that have dominated our patient’s consciousness it becomes possible for them to re-engage with their broader needs. My mentors in palliative care showed me that we are most effective when we connect with our patients from within the spiritual domain of our own lives, be it founded on simple humanism or religious faith. However, that does not mean that we should approach them through the particular explanation that supports our individual acceptance of our mortality. Our role is to support them to explore their personal perspective as the determinant of the state of their spiritual wellbeing.
We can seek to know how they came to be who they are;
Where were you born and where did you grow up?
How about school?
What did you do during the war (WW2, Korea, Vietnam, Afghanistan or Iraq, or perhaps Rwanda)?
Who are your family and the other important people in your life?
Do you have a religious faith or other belief system that is important to you?
What has been your work, where did you travel, interests, hobbies?
What else is important to you?
Such questions can encourage and support our patient to step out from under the shadow of their disease to create a narrative with themselves at the centre. They can open a door to addressing those matters that are most important to them as they deal with the end of their life. Part of our role in palliative care is to allow and facilitate people the opportunity to contemplate their life as they see fit – to reflect on their upbringing, culture, relationships, experiences, choices (wise and unwise), personality and/or acquired beliefs. For many that is about discovering a sense of meaning within their own lives. Of course, we can never know all the factors that have shaped anyone’s life, and indeed, none of us are truly aware of why we ourselves are the way we are.
And as we do so, we can create a model of openness for their family and friends, and for our clinical colleagues.
Such conversations are generally not difficult, so long as you accept the not infrequent tears as normal and healthy. For most people, those who don’t have deep and complex issues that require specialist psychotherapeutic intervention and for whom we must be alert, the opening of doors is generally welcomed, and may be recognised as long overdue and produces benefits almost immediately.
An unremarkable act of kindness can relieve distress, and perhaps reset a person’s life, although of that we may never know. Many years ago, when I was a junior doctor working in paediatrics (and a parent of three- and one-year old’s), I had been called in late one evening to tend to some urgent matter or other and was walking through the children’s ward on my way back to the car park. I heard a child crying and went into the six-bedded bay to ask what was wrong. He was not my patient and was due for some kind of surgery the next day, and he was scared and alone. I asked him if he would like me to read him a story. He said yes and after about 5 minutes of softly spoken words he fell asleep. He had been afraid of what the next day would bring, he had no-one to console him, his bed-time routine had been broken, and a long and lonely night loomed in front of him – a paediatric version of spiritual distress. A simple and ordinary moment of human contact was all that was needed to return his world to enough of a semblance of normality that he could relax enough to nod off.
If pressed, each of us could tap our belief systems to generate our own definition of spirituality. The risk is that, having done so, we would come to understand our patients and describe their world from within the constraints of the beliefs that had generated our definition, potentially limiting our ability to recognise and address their needs.
I would prefer to abandon the use of the noun spirituality, simply because it embraces such a vast array of mutually-exclusive explanations. These range from the proposition that spirituality is simply an emergent product of the structure and function of our brains through to its being the manifestation of a mystical extracorporeal entity that derives from a domain described by particular religious beliefs. I would prefer to encourage the use of spiritual as an adjective,
“relating to, or affecting the human spirit or soul as opposed to material or physical things.”[3]
I have come to understand our spiritual wellbeing as a dynamic state that is the product, or perhaps the sum, of numerous fluctuating influences on our sense of equanimity.
As discussed above, for healthworkers the initial connection with a distressed person is commonly driven by the need to address physical symptoms. However, as has been recognised for a long time, the experience of physical symptoms is strongly influenced by fear and anxiety, loneliness, isolation, depression and confusion (and vice versa). These in turn are shaped by the sense of meaning or purpose in the life being led, the degree of comfort found in religious belief, the success or otherwise in having achieved or fulfilled particular goals, the strength of relationships, and/or, for many, a sense of connection to the physical worlds of the outdoors, the arts and of music.
The significance, origins, nature and dynamics of such influences are different for each of us, and we vary greatly in our ability to manage them as they reverberate with one another across a range from contented harmony to violent discord. Their complexity is amplified by the events of our lives and the oscillations of our physiology, particularly when disrupted by illness.
Many people have found a degree of spiritual equanimity long before they are referred to palliative care and are untroubled by the fact and timing of their death, even while they might be sad at saying goodbye and perhaps a bit wary of the process of dying and what might happen after they have died. Others who are approaching the end of their life may, in addition to concerns about the physical process, find themselves reflecting on their life, their achievements and their failures, their relationships, their legacy and perhaps on the worth of their contribution. Some are more worried about the living, their family. Others are wary of, or even deeply troubled by, whatever they believe, fear or suspect might happen to the continuity of that consciousness of self that emerged when they were a child and has accompanied them throughout their entire life. Such challenges are more easily managed if those living such concerns are permitted and supported to address them openly as they wish and need, rather than obstructed or ignored.
Part of our role as healthworkers is to support people as they navigate their individual path through this maze. While any of us may be greatly troubled by the unique consequences of our particular life-ending illness, we all face the universality of some form of life-ending event.
Several years ago, I went with our team to meet for the first time a patient who had been admitted to our palliative care unit. She was uncomfortable, unhappy and restless, and very much focused on her impending death and the physical consequences of her illness. We took our time as we explored her understanding of her illness and of her symptoms as the source of her distress. As we got to know her better, and her us, our conversation shifted to her life and I asked her what kinds of work she had done. Her friend, who had been seated quietly beside her throughout the consultation, piped up that she had been a professional cover singer of the female vocalists of the 1950’s. I immediately pulled out my mobile phone and downloaded several songs from her favourite and we played them to her. The result was remarkable. Her whole demeanour changed and she started to sing along.
She was immediately more settled as our conversations about her life shifted her focus from her illness onto her whole person, and explored the life she had led and how she felt about herself. We had shared her enjoyment of the things that gave her pleasure and, while not neglecting her physical symptoms, we continued to talk about her life because it was both intrinsically interesting and vital to her spiritual wellbeing. Her symptoms improved significantly, although medications may have had a lot to do with that, and she died several days later in a much better spiritual state than when she had arrived.
Simple curiosity about the person and their life as whole person care has opened many a door for both patients and their clinicians. It works its magic because it invites the person, not the just the patient and their illness, to the fore, and gives them permission to voice and address those matters that comprise and create the unique and perhaps unfathomable state of their spiritual wellbeing.
[1] Cairns W, Science relocating spirituality in the bio-psycho-social, Palliat Med. 2012 Mar;26(2):187-8. doi: 10.1177/0269216311433927
[2] Hutchinson T. (Ed), Whole Person Care: A New Paradigm for the 21st Century, Springer, 2011
Dr Will Cairns OAM
Specialist in Palliative Medicine, Townsville, Queensland