Spiritual care at the end of life What is spirituality?
Spirituality is an inherent aspect of human beings and means many different things to different people. We are not here talking about religion, which is a way of understanding and ordering spirituality for some. People often produce a number of meanings of spirituality, struggling to define something that is dynamic and in continual growth and development.
Healthy spirituality Is unique, embodied, a search, a journey. It has stops and starts and may be lonely and painful as well as enriching and fulfilling. It continues from first cry to last breath – both of which take us by surprise. It has a number of meanings.
- Unknowable – beyond rational and religious
- Centre of self or soul
- Meaning and purpose
- Growth and transitions
- Seeking right path
- Religious beliefs
- Spirituality and connection
This diagram attempts to show the connectedness of spirituality. The three leaves of the diagram represent the self, the natural world and the human other. The space at the centre represents the transcendent within and the space around represents the transcendent without. This ancient diagram is most commonly associated with Celtic Christian art.
The beauty of this diagram is that it shows the intimate interconnection of the whole so that although it is possible to speak about aspects of spirituality in relation to the self, the other, the natural world and the transcendent, in reality all aspects are interconnected. Changes in one aspect inevitably affect all the others. The individual person does not exist in splendid isolation. At any point in time spirituality experienced in the depths of self, with others, in the natural world and the transcendent moves between all these aspects in a fluid flow of connection that resembles a laser light show.
Those who are dying experience deep spiritual pain as do their family and friends. Spiritual pain may involve a deep sense of loss of self, meaning and purpose, control, and of life. Many people find it difficult to understand and deal with. As one patient said "You'd think cancer was catching. People cross the road to avoid having to talk to me."
Physical suffering can be helped by appropriate medicine but spiritual suffering needs deep human connection. People at the end of life are often fearful, feel guilty and unforgiven or unforgiving about past events and worry about being a burden to those they love. They also fear being abandoned. The commonest reason for seeking assisted suicide or euthanasia is the fear of being a burden or being abandoned.
Some years ago I saw a patient who was restless and unsettled. When asked what was wrong he said crossly ''I'm not myself any more''. This is the state of all people who are dying. The healthy competent self is lost and suddenly they become weak, fearful and helpless. It takes time and help to accept this self as another aspect of the journey. It is about seeking healing which can only occur when there is deep human and spiritual connection between patient and carer.
Treating spiritual pain
Treating spiritual pain has three aspects – bearing witness to suffering, enabling hope and letting go. Bearing witness is not being an idle bystander. It is allowing yourself to be drawn in to the world of the 'other'. This can be described as the courage needed to provide a bridge to the suffering person. When this happens both are transformed and enriched.
Bearing witness makes meaning by acknowledging the reality of suffering and not abandoning the sufferer. Bearing witness in this way we become just one human being to another. It takes courage to stay with anyone who is suffering for humans possess mirror neurons that resonate with the suffering of others. It also requires persistence to stay faithfully with the suffering person.
The second major task is to offer hope. There are two kinds of hope.
Extrinsic hope, dependent on other people, happenings and circumstances
and intrinsic hope which comes from within the depths of the person.
Extrinsic hope is not very helpful when based only on options for physical cure. On the other hand it is good to hope for a pain free day, to see a new grandchild, or a friend coming from a distance.
Maintaining hope and trust in the face of death is about accompanying and bearing witness to the patient's journey and providing care for physical, psychological, spiritual and social symptoms for the patient and their caregivers. Most of all it is about listening well. "Listen to me, do but listen and let that be the comfort you offer me." is what Job said to his false comforters. (Job 21:1-2) It is the plea of those who are feeling abandoned and losing hope.
Intrinsic hope may be in remembering past positive or supportive experiences or events. Recalling how spiritual pain and grief in the past has been coped with may be helpful as can remembering the sense of the presence of God or the transcendent.
Being there is central to hope. It is also clear that seeing people who are known is very much better for patients than seeing strangers. Finding and recognising the symbols of hope that speak to the individual is very important. Symbols of hope are unique to each person and they connect that person to events in their lives that have been enabling of growth and love.
I once visited a patient. In the corner of the room was a huge tussock. I admired it, saying how beautiful tussock was. The patient who had been very quiet, lying flat and looking sad, sat up and talked passionately about the importance of tussock to high country musterers. Its smell, its texture; how each man and dog found a clump to rest in after lunch. You could see the spiritual connections unfolding, to mountains, to loved companions, to dogs and sheep, to the earth and to a son who had thought of bringing it in. The dance of connections lit up the room for both of us.
The final task for those dying is letting go. As might be expected this is not a one way process for carers and family also have to let go. Sudden death makes letting go very difficult because there is no opportunity to say goodbye. Having time to say goodbye certainly seems to make grieving a smoother process.
For the carer, it is letting go of the person cared for. For some it may also involve letting go of wishing to fix the other person's suffering. The wish to avoid suffering seems to be a strong motivator for suggesting assisted suicide for some people.
Care of the carer
It is very important that spiritual care is practiced by caregivers. There are many ways of nurturing spirituality. Taking time to be is the most important. This is needed for reflection and connecting with others, the natural world and the transcendent. Having a creative activity also seems to nurture the spirit. Prayer and rituals may also be spiritually nurturing. These may be simple lighting of candles or playing gentle music.
The human paradox is being born yet knowing we will die. Facing this sends all people on a lifelong spiritual journey. Dying in our culture is usually seen as a bad thing. Yet we are all going to die. Our western culture tries hard to ignore this paradox. Scientific medicine colludes in this illusion by promoting the idea that medicine is primarily about cure. Cure is the removal of disease by medical or surgical means. It focuses on the pathology of individual organs, systems and people. This means that death is seen as failure and so is difficult to talk about.
The angriest patients I saw whilst working in a hospice were those who had been told at the hospital "There is nothing more we can do here for this disease." When doctors focus only on cure, patients feel abandoned when cure is not possible. There is a conspiracy of silence that interferes with good conversation about the hopes and desires of people when they are moving towards death.
To die well is a healing event for the person, family and friends. In order to do this the dying person and their family need healing. Healing finds new meaning, reconnection, and reintegration with family and community. Families need to be well supported, told the truth about what is happening and the possible time frame. They need to forgive and be forgiven, to remember their life together with joy and thankfulness. Death may then become the final stage of growth.
Anna Holmes PhD MB ChB, a General Practitioner for forty years has worked in palliative care for the last ten years. A lifelong interest in the interface between spirituality, health and healing was completed by a PhD Embracing the Paradox: Spiritual Issues in General Practice.