The study was located in three oncology wards representing the in-patient component of a cancer centre located within a large university hospital in England where the lead researcher (AF) is a nurse specialist. There were 204 deaths on the three wards in the year the study was undertaken (median 192, over 3 years).
This study used a qualitative case study design with each case representing a patient who had died and their most involved nurse and doctor. In qualitative case study approaches, even though the cases selected may not be generalizable in any statistical sense, a detailed study of their features and context is undertaken to provide insight into pertinent aspects of the wider problem under examination. At the beginning of three consecutive months, April to June 2010, the lead researcher (AF) approached the oncology wards and, with input from the clinical teams, identified the first few patients each month who had died. Any patient known to AF was excluded. A convenience sample of six patients, two per month, with varying gender, age, primary cancer diagnosis, consultant care and use of the LCP were selected. The nurse and doctor who were involved most in the care of the patients in the last days and hours of life were identified and invited to participate in the study by letter.
After obtaining written consent, qualitative, one-to-one, face-to-face interviews were conducted by AF with the healthcare professionals. An aide-memoire of topics was used to guide the interviews. Topics covered included: the experience of the identified patient in their last hours to days of life as perceived by the healthcare professionals; factors that facilitated recognition of dying; factors contributing to the implementation or not of the LCP; the benefits or not of using the LCP; how discussions about dying were conducted with the patient and/or family; and how aspects of caring for dying patients on the cancer wards could be improved.
The study was reviewed and approved by the UK National Research Ethics Service and the NHS Hospital Trust Research and Development Department. Data were anonymised. Participant confidentiality was maintained throughout the study. To enhance anonymity when reporting the case studies patient demographics were altered, with care taken to maintain the essence of the situation for each case.
Interviews were audio-recorded, and then transcribed verbatim. Firstly, the data were scrutinised to construct the story of unfolding dying as experienced by the identified patients, with attention to the implementation or not of the LCP, and how participants described its perceived role or value and the provision of care on a hospital ward. Summary narratives were compiled for each case. The data were then revisited and thematically organised and analysed. This involved developing a thematic framework by identifying key issues and concepts, drawing on both a priori issues identified by the researchers and those raised by interviewees themselves. This approach to analysis included initial familiarisation of the transcripts; identification of themes; indexing, in which the transcripts were annotated allocating relevant text to the identified themes; formulation of mind mapping charts and a coding framework table to identify and interpret key and interrelated themes. A brief synopsis of the narratives about the unfolding dying process as reported by participants will be presented for some of the case studies (Cases 1, 2, 3, 4 summarised below). The themes ‘when dying is recognised and care is supported by the LCP’ and ‘when dying is not supported by the LCP’ will be used to present additional data incorporating direct illustrative quotations.
Case study 1
An elderly man was admitted with bilateral pneumonia: intravenous antibiotics, high flow oxygen, and intravenous fluids were administered. He was confused and disorientated. Although he had a poor chance of survival, the plan for his care, as advised by the consultant oncologist, was to continue supportive care; if he deteriorated the LCP was to be started. Over the next 24 hours his oxygen requirements increased and he became drowsy and unresponsive. The fear and anxiety of the family were recognised:
Every time he closed his eyes the family was trying to wake him up. The doctor took them to one side and said look this is what is happening…they came back and they were calm, and they said ‘thank you’ and they accepted that he was going to pass away quite quickly…they were relaxed, and it was a nice atmosphere in the room (Nurse: moderately experienced).
Participants reported that this approach enabled the junior doctor to approach the situation without delay and, with confidence, engage the family in discussion and prepare them for the imminent death. In commencing the LCP the focus became comfort, dignity and good symptom control. Participants reported that the family found clear communication helpful; having a clear plan facilitated comfortable dying. He died two days after admission.
Case study 2
A young woman with advanced metastatic breast cancer was admitted with deteriorating liver and kidney function. The day after admission, on the ward round, the consultant took the patient’s husband aside and told him that his wife was dying. The patient continued to eat, drink and take oral medications. Over the next few days her condition deteriorated and the LCP was commenced. When too weak to swallow, her physical symptoms including seizures, were controlled using medications in a continuous subcutaneous infusion. She became drowsy and slipped into unconsciousness; she died six days after admission.
Despite directly questioning the consultant: “Am I dying?” the patient was not included in the initial discussion about dying. It was the Macmillan nurse who engaged in these difficult conversations and supported the nurses and junior doctor in continuing to explore the patient’s worries and concerns.
Participants reported that recognition of the dying phase and honest communication was helpful, it provided focused time to help to prepare the patient’s young children for their mother’s death; provided an opportunity to address the patient’s anxiety about the dying process and to explore preferred place of death. She died six days after admission.
Case study 3
A middle aged man with prostate cancer was admitted with hypercalcaemia. Realising the potential seriousness of the situation and with a son living abroad, the family sought guidance from the junior doctor about whether the son should fly home. When the consultant reviewed the patient the junior doctor was not present so the opportunity to discuss the situation in the context of the family circumstances was missed.
Maybe if we had as a team sat the family down and said “It’s not looking very good, something is going on, we’re not reversing this, he may not survive this episode of illness” maybe that would have prepared them a bit more (Nurse: moderately experienced).
The patient’s confusion increased and he became drowsy. On the consultant ward round on Friday, the week-end care plan was formulated which included instigating the LCP if he deteriorated further. This was discussed with the family but the patient died on the Sunday, not on the LCP, and before the son arrived.
Participants reported that daily blood tests, intravenous fluids and regular observations continued. Discussing how things would have been different if the patient was on the LCP the doctor commented:
I think it’s knowing that it’s OK not to do the obs [observations], literally. I know that sounds really silly but sometimes you kind of need permission to stop doing stuff like that…but I guess just being left in peace really would have been better for him (Doctor: moderately experienced).
Case study 4
A young man with lung cancer had been considered for palliative chemotherapy; this had never commenced due to his rapid deterioration. He was admitted with a chest infection which was treated with intravenous antibiotics, fluids and oxygen. A nurse describes his last afternoon (a Sunday):
On his last day we wheeled him outside, it was a really lovely day …after a couple of hours he took a turn for the worse, he wasn’t responding to us and the nurse looking after him, she was ringing the registrar saying, “Can we get him on the Pathway? Or can you at least come and see him because he has taken a turn for the worse?” And they wouldn’t come and see him (Nurse: moderately experienced).
The on call doctor had previously prescribed medication for symptom control in accordance with the LCP algorithm but had not communicated with the family about possible deterioration. So although the nursing staff had medication to help his symptoms they struggled with the situation:
I don’t think they [the family] had a lot of preparation. It would have been nice for the doctor to have spoken to them because he was still having all of his treatment, they can see he’s still having fluids, and we’re giving him antibiotics, we’re checking his blood pressure, so in a way that’s hope for them that he might pull round. We knew that wasn’t going to happen…but in that situation you can’t say “All we want to do is keep him comfortable because this is his last few days” you can’t say that because it’s not really been broached (Nurse: moderately experienced).
Failure to instigate the LCP was seen to contribute to a situation whereby the nurses felt unable to talk honestly to the family about the reality of the situation and prepare them for the death which occurred later that night.