Spirituality and terminal illness
Keywords: spirituality, terminal illness, palliative care
'The impact of a person's religion is either life-engaging or life-escaping'
A working definition of spirituality is awareness of the transcendent ('the beyond in our midst'), the awareness of something beyond intellectual knowledge or normal sensory experience. It is a person's spirituality that engages with fundamental questions such as: In my particular circumstances, what does it mean to be fully human? What does it mean to be whole?
Spirituality is thus concerned with:
•meaning and purpose in life
•interconnectedness and harmony with other people, planet Earth and the Universe
•right relationship with God/a power or force in the Universe which transcends the present context of reality.
For people facing death, such concerns tend to be brought into sharp focus. Although often intermingled, spirituality and religion are not the same. It is possible to have either a secular spirituality or a religious spirituality.
Broadly speaking, a religion is a shared framework of theistic beliefs and rituals that gives a social context within which spirituality is expressed and nurtured, and the meaning of life explored. In practice, the impact of a person's religion is either life-engaging or life-escaping. These two types are represented in the adherents of all religions. Life-engaging religion is generally supportive in the face of illness and death; life-escaping religion often is not, and may well increase fear and distress.
Further, those who accept a specific religious label are often not wholly orthodox in their beliefs. Thus, a Christian or a Muslim, for example, may not believe certain dogmas contained within the official statements of belief. In other words, a specific religious label does not necessarily mean a specific set of personal beliefs. As always, it is necessary to listen to the patient and not make unwarranted assumptions.
The basis of spiritual care is acceptance and affirmation - treating patients with deep genuine respect, thereby demonstrating that we regard them as valuable fellow humans no matter who, what and how they are. Spiritual progress or growth can be defined as a movement towards greater wholeness and integration. This generally includes the need for inner healing, that is, achieving and maintaining a right relationship with one's self, others, environment and God. This is likely to be facilitated by maintaining the relationship with the person's faith community, where this applies, and continued access to and involvement in religious activities.
As a terminally ill doctor once said, 'You can't die cured, but you can die healed.' This includes being able to say or convey, particularly to one's family and friends: 'I love you', 'Forgive me', 'I forgive you', 'Thank you', 'Good-bye'.
For me as a Christian, when caring for the dying, it is important for me to remember that the death-bed is not a place for dogma or for preaching. It is a place for stressing:
•the unconditional love of God for the whole creation
•the forgiveness of God for past wrongs and shortcomings
•the promise of God that the best is still to come, in that death is the gateway to fullness of life in Eternity.
In the Valley of the Shadow of Death it is necessary to acknowledge that 'a reaching out to what is beyond' is an expression of true faith and hope, and that the recognition by a person of God's unconditional love for the whole created Universe reflects a genuine turning towards and response to God.
Any illness tends to concentrate the mind and raise questions about what is beyond death. Towards the end of life, there is commonly an increased need for affirmation and acceptance, and a corresponding need for forgiveness and reconciliation ('completion'). Most dying patients reflect on fundamental questions, such as:
•Personal identity in the face of actual and impending losses: 'Who am I?'
•The meaning of life: 'What is the meaning of life now that I am dying?' 'What's the point of it all?'
•Quest after God: 'What do I really believe?' 'Is there a God?' 'What is my relationship with God?'
•Meaning of suffering and pain: 'Why do I have to suffer?' 'Why has this happened to me?' 'Why does God allow me to suffer like this?'
•Guilt feelings: 'I've done many wrong things; how can they be put right?' 'Can I be forgiven?'
•Value systems: 'What value is there in money, material possessions, and social position?' 'What is valuable in my life?'
•Life after death: 'Is there life after death?' 'What's it like?'
Patients are unlikely to raise such questions with health professionals unless given an opportunity to do so - and even then may choose not to do so.
•A sense of hopelessness, helplessness, meaninglessness (patients may become withdrawn and suicidal): 'I'd be better off dead than living like this'; 'What's the point of going on like this?'
•Vivid dreams/nightmares, e.g. being trapped in a box or falling into a bottomless pit.
•Intense suffering (includes loneliness, isolation, vulnerability): 'I can't endure this any more'; 'If this is the best you can do, I'd rather be dead'.
•Remoteness of God, break with religious ties: 'I don't believe in God any more'; 'I can't ask him for help'.
•Anger towards God, religion, priests, etc.: 'Why? Why me?' 'What have I done to deserve this?'
•Undue stoicism, a desire to demonstrate that one's faith in God is unshakeable: 'I mustn't let God/my religion/my family down'.
•A sense of guilt or shame (illness means punishment): 'I deserve to be ill.' 'I don't deserve to get better.'
•Bitter and unforgiving of others: 'I'll hate him for ever for what he did to me/my family.' 'No way! He's not welcome here. Tell him I don't want to see him - ever!'
It is important to recognise that some intractable symptoms reflect unexpressed spiritual distress, and that deliberate, specific enquiry may be indicated. The following questions may facilitate communication at this level:
•'What causes you the most suffering?'
•'What or who do you find most supportive when life is difficult, like now?'
•'What place does religion or God have in your life?'
Patients are generally very perceptive and are unlikely to embarrass their carers if they sense that communication at this level will cause discomfort. There is need, therefore, for self-awareness in the carers - and this will be facilitated by appropriate education and training.
Even so, if a patient does raise such issues with a carer who prefers not to get involved at this level, they should find out if the patient knows a priest or other religious leader. If the patient does, the carer can offer to let the person in question know about the patient's concerns or, if in hospital, the carer may ask if they may share what the patient has said with the appropriate spiritual counsellor.
No one should ever think that they understand the spiritual pain another person is suffering. Each of us has to find answers to the challenges of life that are personally satisfying. Thus, providing neat answers to a patient's questions is unlikely to be helpful. Sharing in not knowing may well be more comforting for the patient than being left feeling that other people have all the answers. Further, respect for patients as individuals does not allow the imposition on them of one's own faith (or lack of it). Even so, many patients are comforted by the discovery that their doctor, or other carer, has a religious faith.