1.4.7 Case study 4: The death of Meg – a home death
Meg was diagnosed with rheumatoid arthritis at the age of 28, shortly after the birth of her second child, a diagnosis which was changed to systemic lupus erythematosis (usually called SLE or lupus), ten years later. This is a rare chronic degenerative condition, which mostly presents in mild forms, but in Meg’s case the condition was severe.
When Meg was first diagnosed with rheumatoid arthritis she was devastated and contemplated suicide, mostly because she was afraid of losing her mobility. ‘All I could see,’ she said, ‘was the vision of a wheelchair, and I couldn’t face it.’ Meg later met the news of the revised diagnosis of lupus with feelings of anxiety, including concern about the possibility of an earlier misdiagnosis and how this would affect the medical management of the lupus, and fear of an early death, particularly while the children were so dependent. In contrast to these feelings, Meg also felt a sense of relief to receive a diagnosis of a more serious condition because it confirmed her suspicions that there was something more seriously wrong with her.
Although Meg suffered several acute episodes of the lupus, more commonly referred to as ‘flare-ups’, she returned to her job as a shop assistant in a large bookshop in her local town. Meg was very outgoing and gregarious and because the job afforded her the opportunity to meet lots of different people, she enjoyed this work immensely. The satisfaction with her job meant that Meg was more prepared to accept the subsequent tiredness from her roles of shop assistant and mother. Since Meg was aware of the potential for the disease to result in her early death she tried to live in the present, but this was not easy, especially since she had many concerns about the future of her children without a mother. Meg’s husband seemed to cope with his own stress by working harder and longer, leaving most of the childcare to Meg. But as the disease progressed, the relative stability of this earlier period was soon to change.
The illness trajectory became characterised by sudden ‘life-threatening crises’, so often quoted in medical textbooks. These required immediate and increasingly prolonged periods of hospitalisation, during which medical staff launched intense rescue interventions. The events became increasingly frequent and the periods in between saw a steady and marked decline as the function of Meg’s lungs, heart, and kidneys diminished. Meg reluctantly resigned from her job and attempted to find hobbies which would occupy her in what was becoming an increasingly limited state of mobility.
Meg seemed to be living her life through the children, and increasingly they became important as symbols of the future. Stuart and Andrew, as they were called, were both talented artists and each in turn was successful in being accepted on a fine art degree course. Meg was particularly delighted with the way they translated their talent into formal study; she saw herself as a frustrated artist who had never formally expressed her talent.
Over the years, Meg’s condition deteriorated and just before her younger son, Stuart, went to university, Meg suffered a grand mal epileptic fit, which he witnessed. This was a significant and traumatic blow to Meg and her family, because it signalled that the lupus now involved the brain, something which she had dreaded, and which left her in a state of terror about the possibility of further fits and what she called ‘going bonkers’. Since her illness started Meg had experienced her body as something which was increasingly letting her down and had become more dependent on her mind, and this was now also under threat. Stuart was very close to his mother and seeing her in the violent throes of a fit brought home to him the reality of her imminent death for the first time.
Matthew, Meg’s husband, was experiencing the transformation of his wife from a very healthy, energetic, extroverted woman into someone who was becoming increasingly dependent and frustrated with the everyday struggle of living. Meg grew to hate her illness. One of the main frustrations was the lack of recognition of lupus, by both the public, and also, more importantly, by the medical profession. She found it particularly difficult to visit GPs, whose knowledge and understanding of lupus was limited. To Meg the GP was her lifeline and she was afraid that because a GP might not realise the rapidity with which flare-ups could occur, he or she would not respond appropriately. There were many occasions on which Meg had to assert her own knowledge of what was happening to her body in order for the GP to take her seriously.
In the last few years of Meg’s life her father, George became terminally ill with cancer and died 14 months after diagnosis. The focus had been on Meg’s illness for so long that when the focus shifted to George the family found it very difficult to comprehend. Because George was at the centre of the family and someone on whom they all depended his death left the family devastated and vulnerable. After his death Meg often dreamed about her father waiting for her in the next world and, on one occasion when she was very ill, she claimed she saw her father at the bottom of the bed.
One specialist consultant managed Meg’s condition and she was happy with her relationship with him and felt able to talk to him and trust him. But when there was evidence of significant kidney involvement, Meg was referred to a renal consultant who took over the management of all her care. Rather than this being a loss to Meg, she experienced the new relationship as much more satisfying. Dr Brown was kind and prepared to answer any questions he could, and consequently consultations in out-patients’ department were much longer than previously experienced because they were so much more interactive. Dr Brown offered Meg some active treatment which signalled to Meg that she was not a hopeless case, but someone worth saving. These two elements of communication and curative treatment became very important to Meg, and made her feel valued and involved. Throughout the course of her illness Meg had been told that there was no curative treatment and she interpreted the proposed treatment as an acknowledgement of her worth. Although Meg was already taking a large number of drugs in an attempt to arrest the progress of the lupus, for the first time someone was offering her curative treatment. As is often the case the new regime was not without cost and involved chemotherapy and high doses of steroids, and Meg spent a lot of time talking over the decision and considering her choice. She often discussed the decision with her sister, to whom she expressed two contrasting wishes: sometimes a passionate desire to live regardless of the cost, and at other times an urge to stop all treatment and let the disease kill her. She was worried about the side-effects as she had been taking steroids for several years and already had osteoporosis. Also one of the worst symptoms for her was nausea and she was very afraid of experiencing this side-effect of the chemotherapy drugs. After a lot of thought Meg went ahead with the treatment, on agreement with Dr Brown that she could withdraw at any time. After three sessions Meg decided to withdraw from treatment, finding that the quality of life between treatments was so poor that trying to save her life and make this period longer was not worthwhile. Meg experienced feelings of guilt at this time about being seen as someone who had ‘given up.’
Shortly after the treatment programme ended, when she was feeling well enough to go out with her mother and a friend, she stepped off the pavement and fractured her hip, for which she underwent a hip replacement. The osteoporosis, partly caused by the steroids, was extensive and over the previous year Meg had suffered several vertebral fractures which caused very severe back pain. A few weeks later Meg was admitted to hospital in crisis with septicaemia which induced complete renal failure. She stayed in hospital for 12 weeks receiving haemodialyis via a kidney machine, but there were times when everyone thought that Meg would die. Meg had asked her sister Kate to do her Christmas shopping and the significance she seemed to afford the Christmas presents suggested to Kate that this was Meg's last Christmas.
Meg was able to come home for a few days at Christmas and the family spent Christmas together at Kate’s house. Meg managed remarkably well, joking about how easy life was now that she didn’t have to worry about toilet access. Kate talked to Matthew after lunch as they washed up together and suggested that he should prepare himself for what could be Meg’s last few months. He had known now for over 15 years that his wife had a terminal condition but was still shocked by what Kate suggested. It seemed that despite the continuous deterioration and recent major events, Matthew did not see Meg as someone who was dying.
In June Meg developed peritonitis, a common side-effect of the form of dialysis she was now on, and had to undergo surgery and be treated with intravenous antibiotics as well as going back on to haemodialyis. Two weeks later after discharge Meg became ill and her GP treated her for a chest infection. On the last evening she got up and went downstairs, in what she called an attempt to energise herself. Stuart was due home the next day for his birthday and Meg wanted to enjoy the visit. Matthew soon had to help her back to bed because she was too exhausted to sit up. He got her upstairs to bed only with great difficulty, she took her medication and Matthew, as usual, left her to settle while he watched late television, or rather dozed in front of the TV. When he went to bed Meg had collapsed and was unresponsive, and since she didn’t appear to be breathing Matthew dialled 999. He was in a state of panic and later recounted that he had no idea what was happening, except that it was like a nightmare. The paramedics tried to resuscitate Meg, and continued to do so on the journey to hospital, but on arrival at the A&E department of the local hospital, Meg was pronounced dead.
All the members of the immediate family arrived that morning and helped Matthew with the practical arrangements. None of them seemed able to make sense of the suddenness and form of this long-expected death. Matthew continued to feel deep regret and guilt that Meg died alone, but found some consolation in the fact that when he found her she looked peaceful.