VOL: 97, ISSUE: 34, PAGE NO: 34
Valerie Howard, BSc, RN, RM, RNT, is a nurse tutor in palliative care, Northern Ireland Hospice
Dame Cicely Saunders, the founder of the hospice movement, coined the phrase ‘total pain’, describing it as ‘the division of a whole experience into physical, emotional, social and spiritual components’ (Saunders and Sykes, 1993). Awareness of this concept is important in all caring situations.
Total pain has four components: physical, social, spiritual and psychological/emotional. Recognition of this was an important factor in the care of Peter McNeill, who came to the Northern Ireland Hospice after being diagnosed with inoperable lung cancer with liver and bony metastases.
The pain in his ribs was controlled by medication, but his pain was not simply physical. As the sole carer of his disabled wife and son, he was worried for their future and financial security.
When patients are diagnosed with cancer or any illness with a poor prognosis, their immediate reactions can be numbness, disbelief and anger. The physical sensations include palpitations, dry mouth and a churning of the stomach (Worden, 1991).
That Mr McNeill was suffering was evident. His posture indicated total dejection. All the members of the multidisciplinary team sought to help him, either physically, psychologically or spiritually. This was often simply a case of being with him as ‘the friend who can be silent with us in an hour of grief, who can tolerate not knowing, not curing, not healing, and face with us the reality of our powerlessness’ (Nouwen, 1975).
Mr McNeill had taken full responsibility for his family. He had not only attended to their physical and psychological welfare, but also dealt with their financial affairs. Having to leave them to cope alone caused him great anguish.
While anxiety about family and finances are the main aspects of social pain, many patients also find it difficult to cope with the loss of their role. One study found that when patients’ roles switched from independence to dependence, their reaction was one of anger (White and Grenyer, 1999). It is difficult for those who are ill to accept that other family members have to take over the decision-making.
Some people who have recently been diagnosed with incurable cancer find that friends and even their families, not knowing what to say in such situations, appear to desert them when they need them most. Nurses can help to bring the dying person and his or her family together to share the impending death, making their last days together more enjoyable (Claxton, 1993).
The hospice social work department was involved in Mr McNeill case almost from the beginning of his stay. Arrangements were made to help his family, including with their legal and financial affairs.
Addressing such matters is not only important for patients’ peace of mind but may also help them to deal with difficult emotional issues (National Council for Hospice and Specialist Palliative Care Services, 1997). It is impossible to treat physical pain without considering the emotional and social impact of the illness on the patient and family.
Mr McNeill did not confide at any time that he was concerned about his future. This may have been because he was overwhelmed by his diagnosis and prognosis. It was clear that he was unable to accept the diagnosis and he would often say: ‘I just can’t believe it.’ This is in keeping with findings that people who are in spiritual pain can exhibit many and various emotions, which may not be verbally expressed or even brought to the level of consciousness (Elsdon, 1995).
These emotions can include painful memories, regret, guilt, anger and fear. However, spiritual pain does not simply arise from fears about the future. As Saunders and Sykes (1993) point out: ‘There may be bitter and most understandable anger at the unfairness of what is happening … and above all a desolating feeling of meaninglessness.’
Nurses often shy away from dealing with a patient who is in spiritual pain, even though we acknowledge that attending to their spiritual needs is part of holistic nursing care. This distancing may be because many of us have not faced up to our own mortality.
Ross (1994) found that some nurses were able to give patients spiritual care: the qualities they had included that ‘they were aware of the spiritual dimension in their own lives’. While it is appropriate to refer spiritual concerns to the chaplain, nurses can help by listening, reading from patients’ spiritual texts or just being with them.
While Mr McNeill did not show outward signs of physical pain, when asked he would always respond that he was in pain. One of the best definitions of pain is set out by McCaffery (1968), who states that pain is what the person says it is and occurs when he or she says it does. Hospice care accords with this statement: we listen to all reports of pain and assess and discuss it with the medical staff and patient. It is important for nurses and patients to accept that pain has an emotional component that needs to be considered and ministered to (Hutchcroft, 1999). In our experience, if we accept a person’s complaint of pain we gain their trust.
According to Payne and Gonzales (1999), ‘although much is now known about the chemical and neurophysical processes … a complete understanding of the pathophysiology of pain in specific patients is seldom possible’.
However, it is vital to understand something of the biological processes to be able to provide effective care. Nociceptors are sensory nerve endings and pathways that conduct pain stimuli to the cerebral cortex. In the brain, the message is converted into a conscious sensation and pain is felt.
Today, a wide and ever-increasing range of analgesia is available, so most patients need never suffer. Good pain control ensures that patients are receiving enough analgesic to keep them pain-free on a regular basis. If the patient does not complain of pain, we have got it right.
Dealing with total pain requires teamwork and each professional branch is as important as the other. Members of the palliative care team work to a single aim: the total well-being of the patient and family. Because palliative care helps patients to maintain their maximum potential, right to the end of life, the concept of total pain is important.
- The patient’s name has been changed.