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I find it interesting that we discuss the problem of suffering so often without defining what it means. We seem to assume that we all know what suffering is because it’s so common. Even in legislation for euthanasia, suffering is nominated as the justification for accessing the law, without its meaning being explored. Many people discuss ‘pain and suffering’ as if the two are inseparable. And the countless stories told in our community about distress at the end of life see us nod our heads in agreement that the two must inevitably be joined. Relief of suffering is integral to healthcare, and in these conversations there is an undercurrent of suspicion that medicine has failed us, and so suffering must be dealt with by other means.

As a palliative care doctor and researcher,[1] I want to dig deeper. I have seen too many people in distress to lump all these things together. Above all I want to say that suffering is individual, and that one cannot assume to know the root of another’s suffering. Suffering may have nothing to do with the physical, yet still impact on our ability to give physical relief of symptoms. Suffering grows out of our own history: cultural, economic and social factors, and the way they influence the meaning we attribute to what is happening to us when we are unwell. The suffering of a dying child in a family which has high cultural expectations for the role of the child in caring for the aged parent may be deepened in a way that may not transfer to other cultures. Historical narratives of oppression and mistreatment can increase suffering for some groups, either by under-treatment (for example Indigenous patients presenting late for care due to suspicion of the institution) or overtreatment (African American patients persisting with futile care for fear they will not receive all they need). And so, if what is experienced as suffering depends on the unique interpretation and significance given it by the individual, the potential antecedents of suffering will be unlimited.

I remember seeing a Lebanese gentleman in the hospital. As I stood at the foot of his bed, I could see his distress. He was struggling to breathe, and every breath held a catch of pain as his chest wall pushed against his cancer. I would have been confident that day to tell you, before I even spoke to him, that he was suffering and that the cause of his suffering was the physical discomfort due to his lung cancer.

I would have been partly correct. He was suffering, for sure. But I would never have known why without sitting down to talk to him.

The modern study of suffering began with the work of Victor Frankl, an Austrian psychiatrist who spent time in concentration camps during World War II. He was not surprised that his fellow prisoners died, but that any survived in that environment. And he proposed that suffering could indeed be endured if one found meaning in life. He called the process of discovering meaning in life and its associated personal growth ‘transcendence’. Frankl’s use of this term refers to the spiritual pathway which can enhance meaning in life and wellbeing, even when other pathways to wellbeing are not available. It is thus possible to be ‘healed’ even in the face of physical deterioration. He proposed that, in unavoidable suffering, one has the responsibility to choose one’s attitude towards it, and that only the individual can discover his own personal meaning.

I asked the Lebanese gentleman, what was the hardest thing for him to bear, as was my custom. It wasn’t the pain or the breathlessness. It was his loss of authority in his middle-eastern family. He was no longer the omnipotent patriarch and he found the demotion humiliating and emasculating. His life no longer had purpose. He suffered. I could start the morphine and ease the breathing, and I would not have impacted his real distress.

Suffering is usually precipitated by an experience of loss or threat to the sense of self. This is often expressed as a disconnection with the person one once was.  Loss is inescapable as we approach the end of life. Diagnosis of cancer, for example, is recognised as a common precedent to suffering, and is recognised as a trigger for the raising of existential questions which require the individual to seek meaning in their experiences: the ‘why me?’. Cancer as a phenomenon contains overtones of death for many people, which become stronger with recurrent or progressive disease. But of course, suffering is not restricted to cancer. It can be precipitated by any illness. Awareness of one’s mortality may not occur at the time of diagnosis but can be the trigger for suffering and the asking of existential questions whenever it occurs through life.

The losses experienced by a terminally ill patient can be felt in every human dimension. They include illness-related losses such as those of health, sexuality, body parts, attractiveness, energy, and loss of sense of control over the disease; social losses, such the incapacity to participate in hobbies, or loss of employment, housing, or income; concrete losses such as pets for which one can no longer care; or relational losses, such as involuntary social isolation due to the embarrassment of others. Loss of roles and responsibilities in the family such as my Lebanese gentleman experienced; personal losses such as those of dignity, autonomy, integrity, and power; existential losses such as those of meaning, purpose, and hope; and finally, loss of the future, with all its dreams and aspirations.

Those working with the dying have long known that life isn’t that simple. Cicely Saunders, acknowledged as the founder of the modern hospice movement, used the term ‘total pain’ to describe the suffering of dying patients. She would sit on the end of the bed of her patients in London and listen to their narratives identifying physical, psychological, social, emotional and spiritual elements of suffering, as well as the need to seek meaning in it. She advocated an individual, multi-dimensional, patient-centred approach to help the patient endure their suffering, with excellent symptom control and inclusion of the family unit as basic aspects of care. She referred to Frankl’s work and the spiritual nature of the struggle involved. These ideas persist in palliative care to this day and inform the ‘palliative approach’ in medicine.

Joe was an older gentleman who tended to be quite cheeky, but we got to the stage where we were having difficulty controlling his pain. In the end he was hospitalised as we manipulated his medications in an attempt to bring him relief. In the ward, he was restless and unhappy, pain still uncontrolled, and I decided to have a chat in order to find out what was going on for him. It turned out that he had two sons, with whom he had had little contact for years. They didn’t know he was sick, but he wanted to reach out while he could. To cut a long story short, we found them and they came in to see Joe. He told them how much he loved them. After that, we were able to get the pain under control quite quickly. He died peacefully several weeks later, having seen his boys two more times.

Suffering is experienced by the whole person. Unity of body, mind and spirit is such that what affects one dimension will affect the others. We need to think of suffering when the physical or emotional problems seem out of proportion to the circumstances. If any, one dimension is out of kilter, distress will be experienced. But in the same way, as we overcome the suffering, all other aspects of care will be easier. Distress can incorporate spiritual, physical, cognitive, psychosocial, functional and existential elements. In this understanding of suffering, it is not a synonym for ‘diagnosed with’ or another word for pain. It is an all-encompassing experience which will pervade the individual’s entire life.

Extreme suffering is also characterised by hopelessness and helplessness which is difficult for the individual to articulate. The individual feels alienated from those around, separated or abandoned by her usual source of strength, and utterly alone. One woman described it to me as feeling as if she were in a rowing boat on the ocean with no oars.

I remember a young woman called Sally, who could not sit still in the clinic room and could not tell me what was wrong. She knew she would die from her disease and had no idea how to cope with her new reality. She was successful in her profession, she was young and beautiful and loved. She could not comprehend that she was about to die. She was suffering intensely. I could feel it pouring out of her. That day she didn’t say anything.

Suffering increases when it remains concealed. But how tragic: that something that is a feature of this terrible condition, namely an inability to articulate what one is feeling, not only makes it more intense, but also makes it harder to receive help. Not that we should expect our fellow citizens to be able to describe their acute existential distress. As a society we have lost touch with spiritual concerns surrounding death. We are youth-obsessed and death-denying, and don’t really know how to die properly anymore. We are uncomfortable discussing it and have lost our traditions in the West. I think we could be trained to die by example, but few of us have seen examples. Most members of the public have never seen a corpse and many people have long ignored the spiritual dimension by the time they face the mystery of death. They’re unprepared, and they’re scared, and they don’t always quite know why. And so, despite its prevalence, suffering goes on unnoticed in our hospitals, with the sufferer unwilling, or unable, to complain.

Modern healthcare is based on a bio-psycho-social model of the human being which ignores the spiritual dimension. It dates back to the European Age of Enlightenment, when the domain of science was limited to the physical body and all other domains left to the church. The purpose was to allow science to escape the control of the church, but it has led to the situation where matters such as spiritual suffering are viewed as non-scientific and therefore not real, or else identified exclusively with bodily pain.

This has led to a situation where medical staff may not be able, or may not want, to acknowledge a patient’s existential distress. It may not be recognised, because it lies outside the bio-psycho-social paradigm, or it may be recognised and ignored, because healthcare professionals may have their own death anxiety and not want to engage. Sometimes this anxiety is expressed as joviality on the ward, which further alienates the sufferer and makes it harder for them to find a safe space in which to talk.

I remember being asked to see Barry, whose wife had dementia. I was told he was a noncompliant patient who wouldn’t take his morphine, and that the pain was getting so bad he was unable to walk. I asked him about finding peace. He told me he would never find peace until he knew his wife would be cared for after he died. It turned out that he thought taking morphine would shorten his life (when in fact the evidence suggests it would prolong it if he took the recommended dose). We put arrangements in place. Barry started taking morphine. You know the rest.

In our society we are all immersed in a culture of comfort where we are more likely to reach for the quick fix than the stiff upper lip. Some people of faith believe there are benefits to be gained from suffering, but this is little reassurance for the wider community that does not share this understanding. It may be that what people are requesting in the call for legalised euthanasia is not so much a right to die, as the opportunity to avoid the process of dying altogether. There seems to be a desire in some people to go from a state of health, straight to a state of being dead, without having to “die” at all. In a society which has lost touch with the meaning of suffering, there is also, understandably, a loss of the willingness to endure it.

It is easy to understand why oblivion seems so attractive to those who feel this way. If you thought this world was all there is and you were suffering, it makes sense to end it all. But suicide or euthanasia can only eliminate suffering by eliminating the sufferer. As Hauerwas has suggested, just because in suicide there is allegedly a decision by the individual does not alter the assumption inherent in euthanasia and assisted suicide that certain forms of suffering are so dehumanising that it is better not to exist.[2] By supporting this choice, we affirm this assumption. Maybe we truly believe this, and would wish the same for ourselves. Maybe we have succumbed to another danger Hauerwas has identified, that the suffering we truly aim to extinguish is our own, as we observe the suffering of others.

True suffering is difficult to witness. It leads to compassionate doctors sustaining false hope rather than confronting a patient with short prognosis; it leads to continuation of treatment when less suffering would eventuate from the hard conversation, stopping the futile or burdensome treatment, and then time at home, out of hospital, while time still exists. It takes time to get ready to die. What is done with the best of intentions – to ‘maintain hope’ – can rob the person of this time. Stopping, or not starting, ‘life-prolonging’ treatment is a morally acceptable and legal choice if the treatment is burdensome for the patient, or no longer working. I think of Julie, who begged for more time on the dialysis machine every time the question of stopping arose. Her cry of ‘You mean, give up?’ was the chance to talk about whether dialysis was prolonging life or prolonging the process of dying. The dialysis was feeding her despair. Cassell has noted that failure to understand the nature of suffering can result in a medical intervention that (though technically adequate) not only fails to relieve suffering but becomes a source of suffering itself.[3]

But this is not necessary or desirable. The perspective on suffering changes dramatically when one becomes aware that suffering is also dynamic. Its intensity oscillates, it can respond to interventions. And for those who find a way through, the transformation is remarkable. It is described, as Frankl suggested, as transcendence.

Treatment of existential suffering is not widely practiced, but research so far is promising. By reframing one’s experience of illness, meaning can be restored, and healing achieved even while the body is deteriorating.[4] Those caring for patients at the end of life regularly see this growth of the individual, in a way that can be wonderfully surprising. The final stage of human development cannot come until one realises there is not much time to live. It is an opportunity to become most fully who we are, to reach our maximum maturity as a human being. It helps us prepare for death without fear. It helps us die with peace.

Are we robbing others of the chance to achieve transcendence when we support the elimination of their suffering through assisted dying? I remember Maria, whom I met two weeks before she died. She was one of the most dynamic people I have ever met. Her joy in life was palpable and she reached out to those around her in an effort to touch them with her spirit. She could speak for only 30 minutes before she needed to rest, and she was diligent in resting so she could be ready to engage with her friends when they visited. She found them approaching her for forgiveness, with thanks, and she helped others whenever she could. She planned her funeral, and instructed her friends on how to play their part. She was so grateful for anything done for her. She was spiritually whole though physically a wreck.

Dying forces us to face the big issues of life What does it all mean? What are we doing here? Western society is struggling to answer these questions. I believe the euthanasia debate is an expression of a society that fears death, and so it trying to control it the only way it can – be choosing the timing and manner of one’s own death. How much better to treat the problem at its source?

Dr Megan Best is a palliative care doctor and a bioethicist. She is a Research Associate at the Institute for Ethics and Society at the University of Notre Dame Australia.

 

Footnotes

[1] Best M, L Aldridge, P Butow, I Olver, F Webster. 2015. Conceptual Analysis of Suffering in Cancer: a systematic review. Psycho-Oncology 24(9): 977-986.

[2] Hauerwas, S. (2005) Should suffering be eliminated? In Berkman J, Cartwright M (eds). The Hauerwas Reader, Duke University Press.

[3] Cassell EJ. 1982. The nature of suffering and the goals of medicine. The New England Journal of Medicine 306(11): 639-645.

[4] Breitbart W, Rosenfeld B, Gibson C, Pessin H, Poppito S, Nelson C, et al. Meaning-centered group psychotherapy for patients with advanced cancer: A pilot randomized controlled trial. Psychooncology. 2010;19:21-8.