Coping with terminal illness: a spiritual perspective
How does it feel to have an incurable illness and to know that you may die soon? Here I am, a seemingly healthy person, working hard to support myself and my family. One day I fall ill and then my doctors tell me that my disease is incurable and that I am going to die. My whole world suddenly changes. I am faced with suffering and pain. The equations in my family also change. I am no longer the breadwinner. I become increasingly dependent on my family. What will happen to my family after I die? Who will look after them? I can't bear the pain of separation. Will they be able to bear the pain of loss ?"
And then there are other difficult questions troubling me. "What have I done to deserve this? Why did this happen to me? Why me? Why is God punishing me like this? What will happen after my death? Is there a life after death? Will I be punished for the sins I have committed - voluntarily or involuntarily. What is the meaning of life? Is there a God or some other supreme power deciding our fate here and hereafter? Where do I find solace?"
These are some of the issues that confront a person who is facing death.
What can we do to comfort such a person? We can try to relieve their pain and physical symptoms. We can help them ventilate and perhaps resolve some of their emotional distress. We may help with their social, material and financial needs. But however much we do, we know that we cannot solve all their problems. Physical symptoms may get worse. Emotional pain may remain unresolved. There might also be social issues that cannot be settled. And there will be those difficult religious and spiritual questions tormenting the person.
In palliative care, we try and find solutions for problems that can be solved. However, when a problem cannot be solved, the only way out is to learn to live with the problem without being troubled by it. This is possible if the person's life isn't dominated by the problem anymore, if the person's mind has moved beyond the problem although the problem continues to exist. This capacity of the mind to move beyond the problem - I have called it transcendence - helps the person find peace. This is what I would call spirituality.
Let us explore this in some detail.
Ordinarily, we understand spiritual pain as pain arising from a non-material cause. The term non-material means things beyond ordinary human comprehension - things for which we as human beings have no answer or solution. However, we have to remember that the spiritual dimension pervades the other dimensions too. Spirituality is not limited to one dimension of being human, but concerns the whole of life (Twycross 2003)
Spiritual pain is a reality that we face in our work. Many people have difficulty coming to terms with the prospect of impending death and bereavement. This distress can manifest as spiritual pain
A physical symptom may also have a spiritual aspect. An intractable symptom may indicate an unexpressed spiritual anguish.
The question "Why did I get cancer?" could be a spiritual question or a factual question or both. Often skilful assessment and clarification are necessary to ascertain if the question is of a spiritual nature.
I would suggest that the best way to respond to a spiritual question is not to provide any ready answer. A person in distress is unlikely to feel better by hearing the words and phrases we have learnt from religious books or acquaintances
Silence is often the best initial response. If appropriate, I would move closer to the patient and touch her to show that I care for her. I might use an empathic statement such as "I see how painful all this is for you" and pause again. If it isn't too distressing for her I would explore her concerns further e.g. "And why did you think this happened to you?" Thus I would allow her to speak and to find her own answers. Many patients already have some answers but often these initial explanations are not satisfying.
A patient once asked me "Why is God doing this to me?" I allowed her to speak on and after some time she said "Probably it is God's way of testing my faith in Him". But from the anger in her voice, I sensed that this thought wasn't comforting her at all.
Even when answers seem destructive, I would prefer to wait and allow patients to find more constructive answers in their own way and in their own time. I would value the quality of patience. We have to be patient with our patients. Many of our patients will, in time, find their own constructive ways of coping.
Only if I felt that a patient was really looking to me for an explanation, would I try to provide an answer. And while responding I would keep in mind the person's religious and cultural background. If I felt that my response might be too conditioned by my own background I would refer her to someone else, perhaps somebody in the team from a similar background, whose insights may be more meaningful to her.
But even our carefully chosen words of comfort, scriptural or otherwise, are still in the material realm. Many people going through a crisis need to find a deeper source of comfort. They need to transcend the material realm in order to find peace.
People suffering spiritual pain can find peace by moving beyond their pain. I believe that the answer to spiritual pain lies in transcendence - transcending pain, transcending suffering and distress.
People with incurable conditions are faced with numerous physical, social, emotional and spiritual problems. Their mind may be so preoccupied with the problem that they are paralyzed. They see no way out. Life seems meaningless. However, it is possible for the mind to move beyond the problem so that the problem doesn't occupy the total consciousness anymore. This movement of the mind, from a state in which it was so preoccupied with the problems it was facing, into a state where it is no more preoccupied with the problem, may be called called transcendence. In other words, transcendence can be described as a movement of the mind from the material plane, so full of pain and suffering, into a non-material plane. This non-material plane cannot be defined. It is a plane beyond the misery and pain of the disease.
In the works of Carl Jung we find this model, a division of the mind into two aspects, the superficial mind and the deep mind. The superficial mind is the mind which we use in our daily life - the part of the mind which senses, interacts and rationalizes. This is familiar territory (the material plane). There is the other part of the mind, the deep mind, which is unfamiliar territory (the non-material plane) - that part of the mind which most of us have not explored. Transcendence can be understood in terms of the movement of the mind from its superficial (material) aspect to its deeper (non-material) aspect (Kearney 1996).
When faced with an incurable disease, the superficial mind gets distressed. It analyses the situation, sees the enormity of the problem and reacts with panic and distress. It senses misery and suffering all around and sees no way out. Either through the practice of formal religious techniques or spontaneously (perhaps when the suffering simply becomes unbearable), the mind can move into its deeper plane. It then transcends misery and finds peace.
The movement of the mind from the familiar superficial aspect into that indefinable area called the deep can be defined as spirituality. Authors have described this experience - this movement of the mind - as a shift in consciousness. In the Indian scriptures this process is described as "breaking the knot" (Mundako-Upanishad).
People reach this transcendence in different ways. There are many methods described in Indian scriptures. For ease of understanding, these are generally classified into four:(Vivekananda 1987)
This however is an artificial division. In practice people are encouraged to choose a technique or a combination of techniques to suit their temperament and natural inclination.
But not everyone needs to follow a formal technique to achieve this state of transcendence. Some can attain transcendence through the experience of suffering.
K was a woman in her late thirties with cancer. When she came to us she had a large fungating, malodorous ulcer in the breast and was in severe pain. We taught the family to keep the wound clean. It took many weeks to control her pain and vomiting.
K knew her diagnosis and did not expect to live long. She was very concerned about her two sons-eighteen and sixteen years of age. Both had a difficult relationship with their father and were dependent on her. The older boy was in trouble with the law and the younger son had dropped out of school.
Our social worker noted that K was overwhelmed by her problems and extremely anxious. The medical team felt that the emotional distress was making her physical symptoms difficult to control. Her pain and vomiting would worsen each time her son got into trouble.
As time went by K became bedridden, the ulcer increased in size and she developed severe lymphoedema of the upper limb. She became totally dependent on others for her care. But though the ulcer and the lymphoedema had worsened, this longer distressed her. Her anxiety reduced and then the pain and vomiting could be controlled. She was also less worried about her children, even during the difficult period when the older son had to stay away from away from home to escape police action.
During our last few visits she had no complaints although she had deteriorated physically and her social problems had not settled at all. She died almost a year after we first met her. Late one night she called her family to her bedside and told them that she was 'going'. She died a few minutes later.
K came to us in great physical and psychological distress. As her disease progressed her physical and social problems actually worsened. However as time went by she seemed to have accepted her condition and its inevitable consequences. The team members remarked on how much she had changed. Her carers told us that she was no longer worried about her situation although she remained conscious and mentally alert till the end. She was not depressed and was always hospitable to visitors. She seemed to have transcended her misery and found an inner peace.
K was a Hindu. But she was not a religious person and didn't use religious rituals to cope. She, like many other patients we have seen, seemed to have transcended her pain without recourse to any formal religious practice.
It is generally believed that people with religious beliefs cope better, when faced with a life threatening condition. However, this is not always the case, and in palliative care we have seen seen religious people who actually cope less well. There is no guarantee that a strong religious belief will help us in times of crisis. Believers may cling to God and religion in the hope of a cure (or for other material benefits). And when cure seems impossible they lose faith and become greatly distressed. They need to move beyond this dark despair, to find a greater strength to cope with the crisis. And this spiritual strength can come to any person, irrespective of whether they are religious or not.
Religion is not synonymous with spirituality. A person may not be religious, but he could be spiritual. And vice-versa - a person could be religious, but not spiritual. Spirituality could be considered the goal of religion. Religion is the path, and spirituality is the goal. Spirituality is attained on transcending religion. As is mentioned in one of the Indian scriptures: "The Vedas belong to this plane - the material / plane. Transcend thou this plane…" (Bhagavad Gita). There is also a passage from the works of the Buddha "The teaching is merely a vehicle to describe the truth. Don't mistake it for the truth itself. A finger pointing at the moon is not the moon…. The teaching is like a raft that carries you to the other shore. The raft is needed, but the raft is not the other shore. An intelligent person would not carry the raft around on his head after making it across to the other shore…. Do not get caught in the teaching. You must be able to let go." (Thich Nhat Hanh 1998)
We live in an age where great conflicts are taking place in the name of religion. It is important to recognize that the goal of all religions is the same, namely to help awaken the 'goodness' in man. Hindu, Christian, Muslim or atheist, all can awaken the 'goodness' within them. Spirtuality may be understood as the awareness of the transcendent, the awareness of something beyond ordinary human knowledge or experience (Mayne 1995).
A person who has realized the spiritual dimension -achieved transcendence - understands that different religions are different paths leading to the same goal (Bhagavad Gita). Mystics of all ages and creeds - Hindu mystics, Christian mystics, Sufis etc, have spoken the same language. All of them have broken out of the narrow confines of their religion and creed and expressed themselves in the universal language of spirituality. To such a person, everybody - Hindu, Christian, Muslim or atheist - is the same. Everybody has the capacity to find the transcendent within them - to find the source of eternal peace and happiness.
We can be too judgmental in our attitudes if we deny that the spiritual understanding reached by people who follow different paths is the same. Many of us believe that our own 'way' is the only way. In this connection, I have heard about a palliative care worker who well meaningly placed a religious symbol beneath the pillow of a patient. The patient who was from a different religious tradition became greatly distressed and couldn't sleep at night, till a doctor removed the 'offending object'. What was a source of comfort to the palliative care worker was a cause of turmoil for the patient. As carers, we have a greater responsibility towards our patients.
I believe that our (the carer's) spirituality is important and that we should each explore our spiritual dimension in our own way before we venture into palliative care.
We must be conversant with our own spirituality if we are to understand and respect our patient's spirituality. Spiritual pain is a reality we face in our work. A narrow or superficial understanding of spirituality, a spirtuality that makes us defensive or dogmatic, may not be helpful to those who are weak and dying. We have to become more open to what our patients can teach us.
Palliative care workers have described how they experience personal growth as they work with dying patients (Twycross 2003). Our spiritual understanding can grow with years of working in palliative care. In caring for the dying, we face our own mortality and find the call to deepen our own spiritulaity
I believe that spirituality is not something that can be separated from the physical, psychological and social dimensions. All the care we offer our patients is actually spiritual.
We need to care for and value the patient as a person, rather than offer clever ideas and solutions (Cassidy 1988). As one palliative care worker put it: "Don't just do something, be there!" (Stjernsward 1997).
We have to avoid the mistake of forcing our ideology on patients. What has worked for us may not work for others. The words of 'spiritual wisdom' we impart may not help our patients when they experience suffering. They need to find a deeper source of strength. As people give expression to their spiritual pain they are trying to find a deeper source of peace and strength. The path they follow in order to find their 'depths' is immaterial. The important thing is that they find solace - achieve transcendence. We have to realize that ultimately it is for the person concerned (the patient in our case) to find transcendence.
In this article I have used the term "transcendence" as a core definition of spirituality. I have used the psychological model of Carl Jung to explain the concept of transcendence. People coming from diverse religious / cultural traditions achieve this transcendence in their own ways. The promise of spiritual liberation is for everyone - not for the select few. Our patients should be able to find this source of refuge. We cannot give it to them -they have to find it for themselves. But we as carers must realize that this is possible. And we must support our patients on their way.
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