1.4.6 Case study 3: Andrew’s death – a hospice death
Andrew was a 23 year-old car mechanic who had been suffering from indigestion for some months before the GP referred him to a hospital consultant, who after a series of tests diagnosed cancer of the colon, with liver secondaries. At this time Andrew was living alone in a small flat a few minutes’ drive from his parents’ home. Because the treatment which Andrew had agreed to involved a long recovery, he decided to move back home with his parents for a while so that he would have someone to look after him and help him to recover from the planned surgery. Andrew’s girlfriend Divya was very shocked by the seriousness of Andrew’s condition, and found it very difficult to be as positive as Andrew was being about the future. As a consequence, Andrew found himself giving a lot of support to Divya, particularly since they had planned to marry later that year and some of the wedding arrangements had already begun.
On the evening of Andrew’s surgery the family were waiting at the hospital to see him. Although they had been advised that it might not be a good idea to visit that first evening after surgery and to telephone beforehand, Andrew’s parents and Divya agreed that they felt better being near to him and also that being at the hospital might increase their chances of being able to see Andrew. They felt that the hospital staff would not refuse to let them see Andrew if they were physically present in the hospital. The surgeon had performed extensive radical surgery to the large bowel, called an abdomino-perineal excision of rectum, leaving Andrew with a permanent colostomy. This had been presented to Andrew as a possible outcome, but was the ‘worst case’ scenario. Because of the time Andrew had spent in theatre and the shock of the surgery he needed to have some ventilator support and therefore instead of going to the ward he was taken to the intensive therapy unit (ITU). The family were asked to visit for a short time only and were told to return the next day when it was felt that Andrew would be much stronger and in need of their company.
As predicted, and to everyone’s delight, the next day Andrew was taken off the ventilator and was well enough to be transferred to the high dependency unit next door to the ITU. Andrew’s condition was a severe shock to the family and seeing him with lots of machines, tubes and drains after the surgery was frightening. That night the family thought that Andrew might die. Therefore the sight of him looking much better the next day served to raise their hopes again and instilled them with a conviction that Andrew was strong enough to overcome the cancer. The family began to prepare themselves for a long recovery period, but were confident that Andrew’s resilience would mean a full recovery.
Five days after the surgery Andrew was on the main general surgery ward and was moving about well. His drips and drains were removed and he was eating a light diet. The ward staff had developed a good relationship with Andrew and were quite often found laughing and joking with him.
All of the biopsy results were back and following an ultrasound, the consultant came to discuss the future prognosis with Andrew. It was confirmed that the cancer had spread to the liver and that although this meant that it was potentially fatal, the consultant thought that Andrew could make a reasonable recovery in the short term. He told Andrew that he felt confident that the cancer in the large bowel had been removed, but suggested a course of radiotherapy as an extra measure. Although the future was uncertain Andrew did not receive this news as a death sentence. He was prepared to wait and see, and to use what time he might have left in living, and even overcoming the cancer. Andrew was very keen to go home where he felt he would make a quicker recovery. He had a lot of concerns about the management of his colostomy and was very disappointed that the consultant did not mention reversing this at a future date.
It was a much thinner, pale and tired Andrew who returned home to face what he hoped was a period of recovery. He had refused to let Divya cancel the wedding and therefore she had continued to make plans, albeit with some caution. The wedding was a goal for Andrew, and because of this it became one which they were both determined to achieve. It was a symbol of life, although privately Divya had a lot of doubts about the future. If Andrew had concerns he did not voice them, and conversations between the family and he and Divya began to feel strained by the pressure of having to be positive at a time of such doubts.
The recovery was long and his adjustment to the colostomy was very difficult. Divya and Andrew talked about the colostomy as if it was something they could overcome, but privately they each had a lot of doubt. Andrew was able to talk to his mother about this and she agreed that they should seek some specialist help. This was the first time that Andrew appeared to suggest that everything was not all right, and in many ways Andrew’s mother felt relieved because of it.
Andrew was still not pain free some 12 weeks after the surgery and the GP suggested it would be useful to contact the Macmillan Nurses, who began to visit on a regular weekly basis. This meant that there were now a lot of different professionals coming into the home and Andrew’s mother began to worry about being able to return to work and normality. Although the company which Andrew worked for was willing to keep his job open, it seemed unlikely that he would return for some time and this impacted upon Andrew’s ability to continue to pay the rent on his flat. Andrew’s father tried to persuade him to relinquish the flat and this caused a row between Andrew’s parents. Divya was now extremely concerned about the wedding arrangements and was hoping to persuade Andrew to postpone the wedding. She didn’t feel able to do so because it seemed like a loss of faith in his ability to recover.
One evening late at night Andrew became very distressed. He had been unable to pass urine since that morning and suddenly the pain in his bladder had become unmanageable. His mother called the hospice number which the Macmillan Nurse had left with her and they suggested that Andrew go to the local Accident and Emergency department. Andrew’s father drove him there while his mother tried to keep Andrew calm, but this seemed one of the longest journeys any of them had taken. Shortly after their arrival the Registrar spoke to her consultant and agreed to put a catheter into Andrew’s bladder to continuously drain the urine. This brought immediate relief to Andrew, but this relief was short because the medical staff wanted to admit him back into the surgical ward to investigate the cause of his urinary retention.
Andrew agreed to go in the next day, but that evening everyone felt very low and full of dread of what this development could mean. The worst predictions, which they all privately made and dreaded most, were correct. Andrew was found to have secondaries in his bladder and a continued infiltration in the remaining bowel above the colostomy site. After the news had been given, it was suggested that Andrew should go to a hospice for the management of his remaining time, which could be very short. The ward staff were very upset, because everyone had found Andrew to be a very special person. The family had also developed a good relationship with them and received a lot of support from the staff, part of which came from their knowledge of the staff’s fondness of Andrew. Divya was able to talk to one of the young senior nurses quite openly about her concerns and she turned to her now to help her to understand what was going to happen.
The first week spent in the hospice Andrew was very depressed and could hardly bear to speak to anyone. His family were devastated, both by the news and Andrew’s response to it, which seemed to be rejecting their help. At the end of the first week, when Andrew’s pain was under control, he announced that he wanted to go home, to his parents’ home. Rather than being positive, as he had been previously, he was very critical of everything that was done for him, and seemed to spend all day complaining. The family needed a lot of support from the staff, and found the hospice staff provided this.
It took the hospice staff nearly a week to make arrangements for Andrew’s discharge and to co-ordinate a system of support at home. As the main carer Andrew’s mother was involved in all the decisions surrounding this support. Despite the involvement of a large team of home care specialists and carers, the bulk of the care was going to fall to the family. In many ways this was what the family wanted, but it was also very frightening. On the night before Andrew’s discharge home, the home care sister, Madeline, who was going to be the main contact and co-ordinator of care, sat with the family and encouraged them to discuss any concerns they had. It was not only Andrew’s physical symptoms which needed to be sorted out but also the emotional state of the whole family. During her conversations with the family both that evening and subsequently, Madeline discovered that each person was carrying their grief in a separate way and she saw part of her role in the time that was left to try to get the family to talk to each other about Andrew’s death. She also felt that Andrew was the key person in this in that everyone was taking their lead for how to be with him from how they thought he wanted them to be. Andrew had withdrawn and seemed unwilling to talk about anything but his physical needs.
Divya had very mixed feelings about the amount of physical caring she wanted to do, but Andrew had very clear feelings that he did not want her to do any of the personal caring. Now that everyone knew that Andrew was dying Divya felt she had a clear role in talking to Andrew about his needs at the end of his life. Most of the time she found this unbearably painful and turned to friends who were not directly involved for her escape and support. Andrew’s father was unclear about his role and spent a lot of time talking to the Macmillan nurse about how he could help. Andrew was the whole focus of his life and he couldn’t bear to think of being without him, and although he knew that Andrew was going to die, he still hoped for some sort of miracle.
The next day Andrew experienced breakthrough pain and a lot of nausea. Plans for his discharge home were abandoned as attempts to control these symptoms were made. His medication was being changed on a regular basis and every day seemed to bring a small crisis. Andrew’s condition deteriorated very rapidly and the family and staff realised that he might only have a few days left to live. Being with him on these last few days became very important to everyone and something that they were each pleased to have, because they felt it was an opportunity to let Andrew know that they loved him. The night before Andrew died, he dozed and woke up with a start as if he was afraid to let go. Despite feeling exhausted his mother sat with him all the time and when he was upset held him in her arms. Andrew died with his mother and father beside him late the following evening. Divya had gone home for a break and was intending to return to spend the night. When she said goodnight to Andrew she felt he stared really hard at her as if he was seeing through her. She was extremely upset that he died when she was not there.