Despite the fact that suffering is a common and universal human experience, there seems to have been little research into how it affects our everyday lives. The process of suffering is intimately related to two other aspects of human behaviour: our propensity to grieve and to become depressed. Both describe reactions to a loss, and both involve to some degree “damage” and “change”. Suffering can be looked upon as the result of grief, and both of these terms describe stages of the same human experience. Depression may be seen as a consequence of both grief and suffering. While depression is a normal part of the grieving process, it may become pathological in either intensity or behaviour. Some people are able to tolerate the destructive force of suffering while others are not. We need to consider the extremely personal nature of suffering, the importance of hope and future recovery, and the fact that significant suffering can be experienced by a person because of what is happening to someone else. A better understanding of this condition can greatly improve the quality of life for the patient, especially for those in palliative care.
The following case study demonstrates the concept of suffering in grief:
Mr P lived in his own home with his wife who had recently developed Alzheimer’s disease. When I first took over his care, his wife’s condition was manageable at home - which Mr P did with commendable will and enthusiasm. Over the next five years I hardly saw Mr P, but his general condition deteriorated. He developed significant osteoarthritis in most of his large joints, gout and increasing angina. He was struggling to care for his increasingly demented wife, despite excellent help from the district nurses.
I eventually managed to persuade Mr P to allow me to admit his frail wife to a local Geriatric Unit as it was obvious he could no longer cope at home. Initially he was very reluctant, but finally agreed on condition that he could visit every day. Within the next 24 hours, two events happened that were absolutely devastating for Mr P. His wife died suddenly within 24 hours of admission to the Geriatric Unit, before he had time to get to the ward. On the same day his much beloved dog was run over outside his house and killed.
This was a crushing blow for Mr P. He felt guilty for allowing his wife to go to hospital and had lost a pet that he adored. He seemed to have lost everything he had to live for, and this was compounded by his increasingly frail health. For the next three months he seemed to be coping remarkably well. He had started gardening again (something he was very proud of), and his knees were “very good”. His only new symptoms were a nagging headache and insomnia, for which he declined any treatment. Unfortunately, soon after this he developed Herpes zoster, which affected his right forehead and right eye. This resulted in intractable post herpetic neuralgia and he was eventually admitted to hospital for pain relief. On discharge his problem list was:
- Pain syndrome secondary to osteoarthritis
- Constipation
- Post herpetic neuralgia
- Reactive depression
He was noted to be “an elderly man sinking into a preoccupation with pain and moving slowly”. He was discharged without antidepressants. However, he did attend an occupational therapy programme at the local geriatric unit (the same unit where his wife had died) where his notes said, “mood low but improving”. I visited him two weeks after his discharge. His pain was “no better” and he was not sleeping. He had also become very frail and lost a great deal of weight. I thought he was significantly depressed (even though he denied this), gave him a script and promised another visit and review in a week.
That was the last time I saw Mr P alive. Before my next visit, and exactly one year to the day following the death of his wife and his dog, Mr P ended his own life in his garden.
It is not possible to experience the suffering Mr P lived with until his tragic death by suicide. But I can try and imagine his suffering - and understand why death seemed preferable to him.
For Mr P, the loss of his wife and his beloved dog were two obvious causes of suffering, but they occurred in the context of other medical and social factors, including his failing health, loss of function, isolation from family and friends, depression, feelings of guilt and lack of hope. We all need to share our grief with somebody (or in Mr P’s case, his pet dog) and when this is not possible, the suffering is intensified. Significant suffering can occur when these losses are not recognised by other people. There is a tendency to minimise the loss of a pet for an adult, especially in the elderly where a pet can become a significant soulmate and companion. The other major source of disenfranchised grief for Mr P was his wife’s severe Alzheimer’s dementia. Such a person can be emotionally and socially “dead”, even though they are physically alive.
Unfortunately, we have no accurate way of determining grief and suffering as it is a subjective and personal experience. Patients do not have a “suffering” meter on their foreheads (calibrated in a range from 1-100). Nurses and doctors need to use all their skills to measure suffering. Awareness, sensitivity and empathy are the keystones to effective treatment.
Mr P died many years ago, but I can still remember the sadness and guilt I felt. I now understand that I was not really responsible for his death, even though I believed that at the time. We are taught we must not become too emotionally involved with our patients because it may interfere with our clinical management. I believe it is not possible to avoid an emotional attachment to people we care for, and this attachment enhances rather than hinders the empathic care that we provide.
Anonymous, General Practitioner
(Abridged)
