My book was published at the beginning of the year. Its title? Soul Matters: the spiritual dimension within healthcare.
Why write such a book? I am a GP (General Practitioner) and that means Family Doctor in Great Britain. We look after people from the womb to the grave. In Great Britain, most people are treated in the community. Only a minority ever see a specialist, few go to hospital – at least that would be the idea. We treat illness and disease but we also try to prevent them. Sometimes I have to go to visit someone at home usually because of the seriousness of the illness or the patient’s poor mobility. This is what happened with Molly – at least that is what I call her in the book. She is stricken with rheumatoid arthritis and her hands demonstrate its classical destructive pathology. She had three strokes with a legacy of unilateral paralysis. However what struck me about her was not the typical presentation of a rheumatoid arthritis case or of a cerebrovascular accident, but her tranquillity in the face of the tragic disintegration of her body. Molly’s case left me thinking and I wondered if I would have been able to face such illness in the way she did. I asked myself, “What inner resources do patients use to face illness?” Molly is only one of many examples. I subsequently did a qualitative study for a Master’s degree and researched this area and years later, the book emerged.
But what on earth does medicine have to do with our inner life? From my own experience looking after various types of patient (be they of religious persuasion or none) I have seen there is often a strong link between the two. Virginia Woolf was a great English writer. She suffered from terrible depression. She found it strange that illness which wreaks such tremendous spiritual change has not taken its place with love and battle and jealousy among the prime themes of literature.
When we look after a patient, it is not simply about treating an organ, setting right some blood tests or improving the function of a biological system. It is about treating a person. A person has many dimensions – and the most obvious ones are physical, mental, emotional, social and cultural. There is also the spiritual dimension. The role that each of these dimensions plays varies in importance according to the patient’s personality and story.
This WHO (World Health Organisation) definition of health is well-known: “A state of complete physical, mental and social well-being and not merely the absence of disease or infirmity”. However the definition of health in Dorland’s medical dictionary is very interesting:
relative state in which one is able to function well physically, mentally, socially, and spiritually in order to express the full range of one's unique potentialities within the environment in which one is living
Today various researchers study the spiritual dimension in medicine. However already 40 years ago Sir Alister Hardy, a scientist, tried to see if we have a spiritual dimension. He was a Darwinian and self-defined naturalist and inquiring agnostic. Through his research he concluded the spiritual dimension in man is in some way linked to our evolutionary process. Following interviews with thousands of people, Hardy concluded that some components of our spiritual dimension are:
• hope and optimism
• a sense of release from fear of death
• a sense of guidance, vocation and inspiration
• a sense of purpose behind events
• a sense of presence (not human).
Hardy did his research on adults, while Robert Coles, a child psychiatrist and professor of Harvard University, studied the spiritual life of children. Coles observed that children both with and without religious life have a very active spiritual life. They ask themselves about the meaning of life when everything goes well and whenever theyface adversity.
Last year I did a Medline search using the term “spiritual dimension and health”. I obtained more than 1300 hits. So it is a topic that interests many... But is it important? Trevor Smith is a British doctor who moved to the States and he wrote a book centred on his clinical experience. He affirms that many people who come to see him saying that they have depression and/or anxiety while in fact they have what he defines “existential malaise”. Smith says that we see this phenomenon particularly in the West because society with all that it offers us (for example the television) does not allow us to reflect deeply as it “anaesthetises us”. During the thirties in the last century, Carl Jung noted that many patients came to see him not because they had true mental illness, but because they were unable to find the meaning of life.
I think the inability to discover the meaning of life, the arrival of a terminal or chronic illness, anything that upsets the smooth, predictable running of life (even if it is something that medically could objectively be minor) – all of these can lead to spiritual distress. In the literature, I found some definitions of spiritual distress. A North American association of palliative care nurses lists the signs and symptoms of spiritual distress, some of which are:
Questioning of the meaning of life
Fear of falling asleep at night or other fears
Anger at God/higher power
Pain and other physical symptoms may be expressions of spiritual distress
Even though they do not refer to physical symptoms, Kliewer and Saultz speak of fear, anger, desperation, separation and guilt (what on earth have I done to deserve this?).
Perhaps I can illustrate the link between illness and spiritual distress with the case of a “patient”. He lived in the nineteenth century and he was a genius with the promise of a dazzling career ahead of him. Disease gradually afflicted him. He described the suffering that it caused and how it even made him curse his very existence. The irony is that Beethoven, our patient, wrote his most wonderful music after he became deaf. Milton, next only to Shakespeare in English literature, wrote his best work after he went blind. Michelangelo would not have been able to pain the Sistine Chapel without physical pain. The paradox of pain and suffering is that it leads to much creativity – but this could be the subject of another book...
Dr Christina Pulchaski is a professor of medicine at George Washington University in the United States. With a group of family doctors, she put together a system for evaluating the spiritual dimension of patients through four points called the FICA tool:
• Faith (What gives your life meaning?)
• Importance (Does faith have any importance in your life?)
• Community (What supports you? Is a religious community important to you?)
• Address (Is there something that we can help you face? What meaning does this illness have for you? What helps you face tough moments?)
Considering the spiritual dimension makes us examine the quality of our relationship with our patients. Pellegrino says there is an urgent need for a philosophy of medical practice. For him, there are three components in the patient-doctor relationship:
• The fact of illness
• The promise to care
• The act of healing
However other models of the patient-doctor relationship are taking its place:
• The legal contract
• Free market relationship (the patient buys and the doctor sells)
• The doctor as a mechanic
A healing relationship leads to the spiritual, psychological and physical well-being of the patient and not just to the biomedical good. In this relationship, the doctor or whoever takes on the role of “doctor” also experiences his or her own vulnerability, pain and healing. When a doctor is not willing to enter this experience, then his work is reduced to a series of tasks which are more or less technical.
Pellegrino speaks of the “good doctor”, whose virtues are:
• Honesty
• Justice
• Benevolence
• Humility
• Courage
He adds another virtue – compassion. The good doctor suffers with the patient. Compassion is the capacity to suffer with another. It is evident through our body language, through our words, through our gestures and our participation in the other’s illness story.
These words of Chiara M, who suffers from a painful, chronic illness, illustrate the deep spiritual life of the sick. They also illustrate the distance that can unwittingly exist between the world of the sick and that of the “healthy”.
...It’s difficult to explain what goes on inside your soul. Everything really. Sometimes you reach the point of thinking what is the point of being born...of being disabled. Through this word the collective imagination depicts the disabled person as an inhabitant of another world, sometimes at the expense of the whole person...
I’ve learned a lot in the last three years. I’ve wept, I’ve reacted strongly to injustice, I’ve had to accept not being understood by some people who were near me. But I’ve also learned not to judge, not to have expectations nor to take for granted that others should enter my world when I myself find a straitjacket and reject it. (Chiara M)
I believe that in medicine we need a new culture, a new mentality and new awareness. Our challenge is to be good doctors who are not afraid of going wherever there is pain, where perhaps there is a real spiritual trial – doctors who take on that pain and bear it with our patients who consequently become our teachers.
M. Aghadiuno
