CHAPTER FIVE
This chapter provides examples of significant relationships formed when the doctor, the chaplain, the volunteer, the student and the
activities staff are included in the team.
reaction to any conversation with the remotest double meaning; she lived up to her reputation of being ‘a real bright spark’. Her ribald sense of humour provoked a variety of comments and opinions. Beverley was forthright about her past relationships and maintained a discerning regard for the male nurses who cared for her. As for her ‘Dr Tom’ she would boldly assert, ‘He and I have been sweethearts since the day we met.’
Dr Thomas had seen Beverley through her various episodes of depression and her successful surgery for bowel cancer 20 years earlier; however, she was reluctant to admit that her current ‘funny pains’ may be due to cancer. Following Dr Thomas’s frank discussion with Beverley’s daughter and granddaughter the question of extensive tests was put aside in favour of conservative treatment. Beverley pre- empted any further decisions by confiding to Clare, the charge nurse, ‘I think it’s the cancer back again. Please don’t tell Dr Tom that I know. He’d worry too much.’
From that day, Beverley was resigned to the cancer taking over. Seldom without humour, never without stoic patience, she succeeded in making light of every encounter with her Dr Tom. It was also Clare in whom Dr Tom confided, ‘Have I done everything I should have? Should I call a surgeon? Maybe I’ve missed something.’
It was agreed that time should be set aside to review all aspects of Beverley’s care with family members present. In due deference to Beverley’s stated wish, the case conference was held without her involvement. Beverley had discussed at length with the charge nurse and the chaplain her readiness to die. ‘I just hope it will be quick and without too much pain,’ she said. And to the chaplain she confessed, ‘I’ve not lived what you would call a perfect life but I hope I haven’t done anyone harm.’
Dr Thomas told the review meeting that pathology tests indicated Beverley was dehydrated. He discussed the options and mentioned his own ambivalence about sending her to hospital for intravenous fluids. He wanted to do all in his power to ease her suffering and to care for her to the best of his ability. He also knew that in hospital she would be beyond his direct supervision and that she may feel he had abandoned her. Nursing staff outlined their views. It was clear to them that Beverley would rather die in her own bed in her own room in the nursing home than in a strange hospital bed. Recalling a recent painful and regrettable experience when a resident had been sent to hospital in the middle of the night on the well-meaning advice of a relieving night nurse and locum doctor, the charge nurse suggested a way forward. ‘It would help us, Dr Thomas, if you would consider writing in her notes that, as it is the wish of Beverley and her family, no further treatment for
dehydration is appropriate and that she should not be hospitalised. That will give clear direction to the whole team.’ The family members nodded.
‘I’m sure that’s the best decision,’ replied Dr Thomas. ‘I’ve already thought about it.
I’m very happy with that decision if we are sure that we are all agreed.’ Later, in discussion with the charge nurse, he confided, ‘Do you know, this is one of the rare occasions when this sort of thing is spoken about openly. I often think, in similar circumstances, that this is the way forward but I’m also unsure about how others will react. There’s always the fear that nursing staff or family will think I should have been more decisive about vigorous interventions.’
Now the goal of care was clearly recorded in the doctor’s notes and the formal care plan:
‘Comfort measures, including pain relief. Not to be hospitalised.’ Beverley had not admitted to Dr Thomas the amount of pain she was suffering. He needed no convincing, however, when shown the pain management chart comprehensively recorded by the nurses. It was also clear that once she could no longer tolerate oral pain medication the time had come for small but regular doses of morphine to be
administered via a needle permanently in place under the skin to save Beverley the intrusion of frequent injections. When the family became concerned at Beverley’s apparently increasing drowsiness the charge nurse asked Dr Thomas to reinforce her explanations to them about the positive effects of morphine. It was apparent to Dr Thomas that the charge nurse, Clare, had the benefit of several years’ palliative care nursing. While reluctant to prescribe morphine at first, or to increase the dose, the doctor’s fears were allayed when Clare offered him a copy of the relevant chapter from her clinical textbook on palliative care. ‘I don’t have much occasion to use morphine in the community,’ Dr Thomas explained, ‘and you know all the fears that used to surround the side effects of such a powerful drug.’ Unused to symptom management according to palliative care principles, he directed the nurses to ‘…just write down all your suggestions and when I come in I’ll write the necessary prescriptions.’ Clare reminded him that her own responsibility as a professional nurse was to ensure she had a comprehensive knowledge of drug administration, but that prescribing was quite clearly his role.
After several phone calls to Dr Thomas, Clare was able to clarify all the issues surrounding the morphine administration; Beverley’s physical symptoms were at last controlled. It was clear that the doctor’s focus on this rather special patient had shifted. Phone calls were no longer sufficient. In the last few days of Beverley’s life he called in at least twice a day, ‘just popping in’ before or after surgery. On some occasions he would bypass the clinical notes and go straight to Beverley’s bedside to sit with her. Once, Clare saw him tenderly stroking Beverley’s shrivelled arm,
unashamedly allowing his tears to fall on the pastel bedspread. ‘I’m ready to let her go now,’ he said at the nurses’ desk, ‘I wasn’t last week, but now I’m ready. Please
continue to keep her comfortable.’
It seemed as though he had only been gone a few minutes when Clare phoned to inform him of Beverley’s death. Returning to the bedside he wept. These tears were not only for Beverley, his long-term and greatly admired patient, but also for his brother who had died recently and for his mother who was critically ill in the intensive care unit of a major hospital. ‘This is how it should be!’ he stated with great conviction and heavy sadness.
Dr Thomas was overwhelmed to receive a letter of condolence from the nursing home that acknowledged his own grief and his difficulties in separating from this very special patient. Thanks were also expressed for his cooperation in carefully
documenting the redirected goal of care. Shared grief at Beverley’s death was
acknowledged while staff and doctor recognised an immense feeling of satisfaction at the outcome of her dignified, peaceful and pain-free death. Some time later, Dr Thomas mentioned his mother’s death. ‘Sorry I got a bit emotional when Bev died but I couldn’t help contrasting her death with my mother’s situation. I’m sure my mother wouldn’t have wanted all that intrusive treatment but there seemed to be no option at the time.’ He repeated with a sigh of resignation, ‘This is how it should have been.’
The story of Beverley and her Dr Tom stands in significant contrast to another experience of death in the nursing home, characterised by a frustrating lack of consultation and openness on the doctor’s part.
Lola’s quality of life was already compromised by Alzheimer’s disease and a major stroke. Seldom registering any meaningful response, Lola was dependent on nursing staff for her every need. She did, however, appear to eagerly eat all the food offered to her. Staff were pleased to feed her as she opened her mouth for every spoonful, always enjoying her cup of tea and showing no signs of the swallowing difficulties evident in many other residents. Lola’s doctor was called when a significant droop was noticed on one side of her face and her limbs showed evidence of increased weakness. Lola looked imploringly at each nurse who approached and she seemed anxious when her family appeared mid- morning, followed by the doctor who was grave and officious. ‘It looks like she’s had another stroke. She’ll have to go to hospital,’ the doctor decided within earshot of Lola and to the consternation of the staff. Lola’s family, accustomed to
always deferring to the doctor, stood in silent acquiescence. ‘May I have a word with you to clarify some concerns, please?’ asked charge nurse Clare. Impatient and brusque, the doctor was in no mood for further delays. However, Clare’s request to wait and see for 24 hours did not seem unreasonable and he was reassured that staff would call his surgery immediately if there were any signs of deterioration in Lola’s condition.
Lola’s family could speak little English, so Clare arranged for an interpreter to come to a case conference the following day. Unfortunately, the doctor was unable to be present, declining the offer of alternative times. While there was no further deterioration in Lola’s condition, there was one dramatic and specific change. Lola refused all meals. Against the frequent offers of her customary sweetened, milky tea Lola’s protest was clear. She held her tongue over the spout of the feeding mug; she pursed her lips and clenched her teeth against every teaspoon of food offered. With the interpreter’s help, Clare explained to the family that Lola appeared to be giving clear direction concerning her own future. The family were not discouraged from bringing small amounts of home-cooked food to try but it soon became evident that Lola’s decision was final. She had suffered enough. With great sensitivity, Clare also explained to the family that Lola was refusing medications and she promised to discuss this with the doctor when he called. A proposed change to the plan of care was drawn up, in accordance with the nursing home’s palliative care philosophy and drug policy. The plan was accepted by the family at a meeting the doctor declined to attend.
The doctor, however, had a different view. He was astonished that there could be an alternative plan. ‘If she’s not eating she will, quite clearly, soon become dehydrated and I have a responsibility to treat her symptoms.’ When asked about the goal of continuing Lola’s blood pressure medications, tranquillisers and sedatives, he became defensive. ‘I wouldn’t order them if she didn’t need them. If she’s not taking them, you’ll just have to do the best you can,’ Reiterating his clearly perceived goal to ‘treat’, he began arranging hospitalisation. Persisting in her role as resident advocate, Clare tried to indicate the result of the case conference in which the family seemed reassured that all Lola’s needs for a comfortable and dignified death could be met in the nursing home. With apparent disregard for the family’s wishes the doctor replied, ‘It’s easy for you. You’re not the one who will suffer the consequences of litigation.’
The sequel to this story is complex, signifying a period of turbulence for family and staff, complicated by the hospital’s response in treating Lola with intravenous therapy and performing numerous tests. Resolution of the preferred site of care was finally brought about by the return of a family member from overseas, who
immediately took steps to have Lola returned to the nursing home and arranged a change of doctor. Lola’s journey towards death did not occur swiftly or without further complications. Having been hydrated and given a wide variety of
medications while in hospital, Lola seemed to be marking time. She lingered on for some weeks, causing further anxiety among the family and increased ambivalence among staff regarding her refusal to eat and drink. Somehow, the provisional plan of care had become lost in a maze of indecision and differing opinion, complicated by the perceived need of a relieving doctor to treat Lola’s recurrent infections with antibiotics. One doctor’s clear and decisive (although unpopular) directives had now been replaced with a variety of doctors’ different responses, the result of rapid turnover of staff from the clinic in question. Seen in the context of holistic or palliative care, the outcome of Lola’s death several weeks later was neither dignified nor peaceful. Recalling the contrasting experience of Beverley’s death and Dr Thomas’s cooperation, the staff reminded each other, ‘That is how it should have been.’