Margaret Murphy, BSc (Hons), DipHE, Cert Onc Nurs.
Macmillan Palliative Care Specialist Nurse, The Ulster Hospital, Dundonald, Belfast
Coping with a terminal illness is very difficult for all involved. The 20th century has brought about rapid advances in medical technology which has led, in some cases, to a view of death as an unnatural process (Chadwick, 1992). For the patient who is dying, his or her family and the health-care staff involved, emotional, attitudinal or behavioural changes occur and influence the attempt to ease the transition from life to death.
Health-care workers’ awareness of how to identify and perhaps assist in solving problems caused by emotional responses can help patients and families to accept the reality of death. The ability to interpret the stages and the reactions of patients and families allows professionals to create a solution that is workable for all. Doyle et al (1999) suggests that ‘the act of following relatively straightforward guidelines, however simplistic they may appear, will at least give us a feeling of competence and enhance our ability to learn as we practise’.
It has been observed that many patients with a life-threatening illness appear to adapt to their condition (Copp, 1996). However, when the condition worsens and progresses to the terminal stage, patients have to face up to new crises and transitions, leading them to view their lives in different ways (Kubler-Ross, 1969). Many theoretical frameworks on death and dying have been developed during the past three decades or so, such as those of Kubler-Ross (1969), Pattison (1977), Corr (1992), Buckman (1994) and Copp (1996). These models focus on the psychological responses and reactions to coping with difficulties in the past. Nevertheless, the above models can be restrictive when exploring the necessary facilitating adaptation to life’s transitional changes, such as dying.
Felner (1985) advocates a transitional framework allowing us to develop strategies for enhancing individuals’ adaptive abilities across a wide range of life changes, including dying. Moos’ adaptive task model (1986), which outlines adaptive and coping mechanisms required by individuals during a period of crisis or transition, provides a useful theoretical framework (Box 1).
John Pearson, aged 47, had been diagnosed with a gastric adenocarcinoma with metastatic disease and had undergone surgical intervention. He was married with two teenage children and was close to his mother, father and four siblings. Mr Pearson was employed as a director of the family business. Despite demanding work commitments, he enjoyed playing football, golf and jogging with one of his two sons. His immediate and extended family had a strong Christian background.
At the time of diagnosis, the consultant made sure that Mr Pearson and his wife were aware of the supportive role of the Macmillan clinical nurse specialist (CNS) in palliative care. Her involvement began shortly after diagnosis and lasted 12 weeks, until Mr Pearson’s death.
Moos’ model (1986) identifies five sets of adaptive tasks (Box 1), further suggesting that these are experienced in every transition and crisis. However, this will vary with each individual.
The concept of transition is not new. Parkes (1972) defines it as a change that necessitates the abandonment of one set of assumptions and the development of a new set. However, the case of Mr Pearson and his family fits well with the first four points of Moos’ adaptive task model. This paper will examine and evaluate each of the five facets of Moos’ model with reference to the case of Mr Pearson.
Establishing the meaning and significance of the situation - Moos (1986) described this as the period of initial understanding of the personal significance of the trajectory. Mr Pearson’s diagnosis was further discussed with him two days after the surgery to remove the tumour. His immediate reaction was: ‘Whatever time is left will be full - it is out of our hands.’ This may be a reaction that is difficult for many to understand. However, Moos’ model discusses coping skills to deal with the tasks and suggests that mental preparation is a skill often practised before and after an event.
Mr Pearson had attended the outpatient department for scan results before surgery and was aware of the cancer. This had possibly given him time to think about what his reaction to further bad news would be if he had to face it, which had enabled him to accept the reality.
In addition, his calmness may have come from the senior position he held in the family business, in that he was familiar with crisis intervention and dealt with this situation in his usual manner. As Mr Pearson’s illness progressed he discussed the diagnosis with his wife, reflecting on conversations with the consultant and what the future held.
Some members of the multidisciplinary team had difficulty in understanding Mr and Mrs Pearson’s control of their emotions. Smith (1993) suggests that many patients and families may cope well at the terminal stage - consequently, there would be little value in digging for signs of distress. Smith (1993) says that families do not automatically have problems when one of its members has an end-stage illness, and professionals must not always assume they will need specialist counselling. Buckman (1994) supports this, saying ‘emotions and responses exhibited by a person facing death are characteristics of the person, not the diagnosis’. Applying the Moos’ model enabled the team to understand Mr Pearson’s calm reaction to his diagnosis.
Confronting reality - It often appears to be difficult for patients to adjust to hospitalisation and the diagnosis of a life-threatening illness and the stress and anxiety it generates - it not only affects the patient, but also the whole family.
Mr Pearson’s wife and his brothers discussed the future with regards to his status as a father, provider for the children and managing director of the family business. Mr Pearson seemed determined to remain the head of the house-hold and breadwinner from his hospital bed, although there was no question of him being able to fulfil these roles at that time.
Moos (1986) suggests that in any crisis or transition a number of issues - which are external to the event itself - have to be dealt with. This appeared to fit Mr Pearson’s situation. Hopson (1981) supports this, stating that people adopt strategies such as reminding themselves that they are relatively well off compared with some other people. According to Moos, this response to diagnosis could be described as ‘cognitive redefinition’. This was how Mr Pearson, his wife and his siblings accepted the reality, and together they restructured it into a more acceptable experience.
Mr Pearson’s parents were very proud of their family and stated that the power of prayer would see them through. Thus they expressed the realisation that there was nothing they could do to change the situation, but used their belief to help them cope with what they had to face. There are suggestions that sickness may be seen as God’s will (Dein and Stygall, 1997); Hall (1994) suggests that hope maintained by religious belief can serve as a vehicle to understand death, or to maintain a positive attitude in difficult situations.
Sustaining relationships with family and friends - Mr Pearson had 24-hour support from his family, who worked out a rota system which had two family members staying at his hospital bedside while two others went home to rest.
The stoma-care nurse became involved with Mr Pearson’s care because of a discharge at the wound site. However, some ward staff felt inadequate in providing Mr Pearson’s care, expressing a feeling that the nurse-patient relationship was compromised as a result of the overwhelming presence of family members.
Moos model suggests that it could be difficult to keep communication lines open, but this is important in order to maintain and facilitate support and should take place between staff, family and patient.
Moos points out that, in some situations, support is needed from people outside the family, especially where this is a closeknit unit, so at this stage the palliative nursing care support was increased.
It was soon discovered that not only the nursing staff were experiencing difficulties, but also Mr Pearson’s wife: she expressed concern over some family members ‘taking control’. The Macmillan CNS facilitated a group session with the family to explore the thoughts, perceptions and questions they needed answered. Reimer and Davis (1990) state that a fundamental principle of palliative care is ‘that the patient and family together comprise the unit of care’. This group meeting resulted in substantial benefits, in that Mrs Pearson gained a better understanding of the family’s needs and reasons for their involvement. The family fundamentally felt that Mrs Pearson needed more time to spend with the children, who were taking important school examinations. As a result of this discussion, the family and Mrs Pearson came to a mutual understanding about one another’s feelings and were able to offer mutual support.
Mr Pearson spoke daily with the consultant about his illness when the reality of deterioration became more evident. Mrs Pearson also had a consultation with the surgeon, which enabled her to get a fuller picture of her husband’s probable progression. Information-giving is an important component of greater openness and trust (Twycross, 1997). At this stage Mr Pearson decided to mend the relationship between himself and a work colleague whom he thought he had offended at one time. Twycross (1997) suggests that this is a ‘renewed need’ for someone who is nearing the end of life.
Maintaining a reasonable emotional balance - Throughout Mr Pearson’s illness his calmness created a sense of unease within the multidisciplinary team. Some members interpreted his attitude and behaviour as complete denial (Box 2).
Mr and Mrs Pearson openly discussed his inevitable death but they acknowledged they had difficulty with the fact that they did not know how soon this would happen.
Despite Mr Pearson’s awareness of his limited life expectancy he remained calm and maintained communication with his family. However, there was unrest between Mr Pearson’s brothers and his wife. She asked if a further meeting with the Macmillan CNS was possible. This was arranged in a suitable, neutral environment, which was very important, to allow all family members to interact with each other without fear. During this meeting it became apparent that the waiting was becoming a strain for individuals and they did not want to upset Mr Pearson with their sadness.
Worden (1987) argued that families who keep their feelings bottled up or distance themselves from what is happening prevent themselves from resolving their grief. It was suggested that the family talk to Mr Pearson about this. Kubler-Ross (1969) also suggests that families who share emotions can face the reality of separation together.
Preserving a satisfactory self-image - Price (1993) suggests that when cancer surgery scars are covered up patients still feel that the disease has violated that part of their body, and some experience altered body image. He also suggests that nurses appear to neglect this area, thereby promoting negative feelings in the patient. Sarafino (1990) states that adaptation to an altered body image can be facilitated by a strong self-image, which can give back patients a sense of control when they become seriously ill, resulting in an ability to adjust to illness.
Mr Pearson continued to approach his illness in a very adjusted and controlled manner, despite the fact that some members of the multidisciplinary team expected him to become distressed. At this stage his body image had altered significantly as he was becoming increasingly emaciated.
Pattison (1977) discusses the specific decisions a dying person can make, regarding wills, property, family matters, funerals and burial, up until the point that he or she has to relinquish control. Despite his rapidly deteriorating condition, Mr Pearson took control of all of the above. He also recognised his extreme weakness and was considerate of his family’s feelings of sadness and distress at his emaciated body. He felt if he could remain in contact with his family, friends and the staff, he would remain the unique person he was.
Being involved in the care of Mr Pearson and his family was a great privilege. He and his family worked through the task of confronting reality with courage, dignity and togetherness. His parents provided the comfort and safety Mr Pearson and the family needed.
Staff who had had training in communication skills and cancer care had an increased understanding and sympathy for Mr Pearson and the family, while those who had not had training tended to use nursing tasks to block their emotional involvement.
During Mr Pearson’s illness the ward manager organised multidisciplinary meetings. This proved to be a very beneficial forum for discussion of the patient’s and family’s care. It also allowed professionals to share ideas of care and to enhance their understanding of the transition from life to death.
Mr Pearson died peacefully 12 weeks after diagnosis with his family around him.
Coping with a terminal illness is a challenge for all those involved. Facing the challenge of controlling the fear, and not allowing it to control us, eases this transition from life to death.
- The patient’s name has been changed.
The author would like to thank the patient’s family; and also Olive Ashfield, Nurse Education Consultant, Beeches Nursing and Midwifery Education Centre, Dundonald, Belfast; Cherith Semple, Macmillan Head and Neck Clinical Nurse Specialist, Ulster Hospital, Dundonald, Belfast; and members of the health-care team involved in John Pearson’s care.
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