Case Summary Example
CARER INTERVIEW 3: 'PHYLLIS'
Date of death: Nov 2000
Age: 78
Carer: wife of deceased
No out-of-hours handover form in place
Patient's illness (throat cancer? - not made explicit) began c.Aug 1999, with difficulty swallowing. Confirmed as cancer at [name] hospital, then went to [other hospital]. Offered choice of chemo/radio, operation or no treatment. Pt adamant that he didn't want chemo. Had operation shortly after Xmas, "100%" successful though had heart problems in hopsital after op. and had to go into intensive care and stay in longer. (Carer describes this as "cardiac arrest" but also as "not a heart attack - breathing difficulties"). Also had to have a tracheotomy for which carer had to give permission. When came home made slow but steady progress for about 3 months, but then began losing weight again and diagnosed with secondary cancer in his liver. Carer told that there was nothing more that could be done - she didn't tell pt this but was sure he knew anyway. Pt was adamant that he wanted to stay at home - disliked hospitals, and carer refers to a very long stay in his youth as at least part of the explanation for this. Pt cared for at home - rapidly became very ill, and couldn't eat solids at all. Received high level of support from District Nurses and night sitters, and also from own GP. Carer stresses excellent support given, but is very upset still about events on patient's final night. DNs twice insisted on turning patient against carer's will, to avoid bedsores, with result that patient became very uncomfortable. Carer then persuaded to go to bed, but in this period patient died. Carer returns to this part of story repeatedly in the interview. After death, Carer visited regularly by DNs, and senior DN still calls in on her.
Pt expressed strong preferences re. treatment and care - not wanting chemo, wanting to be cared for at home once no further active treatment was offered. Carer saw her role as to do what he wanted, though also expressed own preference for caring for him at home.
Carer does not feel she can go against advice of "experts" - eg re. request for permission to do tracheotomy (pg2); contributes to her upset re. pts final night (see below).
Repeatedly stresses how "wonderful" local DNs and her GP were, in amount of attention and support they gave to pt and her. DNs visited regularly, arranged night sitters. Practice also arranged for prescriptions and dietary items to be delivered to carer.
Carer describes caring for husband at home as "hard work mentally". DNs etc were able to help with the physical work involved. She found her inability to provide food which the patient could/would eat frustrating and upsetting - singles this out as an area where she would have liked more advice and help, though she does note that dieticians visited patient when first discharged from hospital.
Able to rely on "terribly good neighbours" to sit for her if she needed to go out during day. Seems to have got good level of night sitter cover. Particularly appreciated fact that she got to know some of the sitters well over repeated visits - one in particular. Does describe them as "very different" in how they worked, and though praises them generally suggests some discomfort re. younger sitters' ability to cope (pg 13).
Carer didn't tell patient negative prognosis when secondaries diagnosed, and doesn't think hospital told him - but states that "he knew" anyway.
Used OOH DNs several times, but OOH GP only once (weekend) - he was well-informed about patient. No complaints about these services.
Much of interview dominated by story of what happened on patient's final night and carer's feelings about it. She is clearly still very upset about it ("I live it every night", "it will haunt me till the day I die" etc). Note that it wasn't until interview seemed to be near end, and interviewer probed repeatedly re. problems, that Carer raised this episode. She repeatedly states that she doesn't want to blame or condemn anyone, but is frustrated, upset - and perhaps angry - that on two occasions that night her requests not to turn the patient were over-ridden by DNs. Statement by DN on second occasion when pt turned against her wishes that "I've had my instructions" upset carer; although uncomfortable challenging their expertise she feels they were too inflexible. Explanation later by senior DN that they have to avoid bedsores because "If a patient dies with bedsores, it causes quite an outcry apparently" is not challenged in carer's account and wasn't at the time - but clearly hasn't reconciled her to what happened. Her feelings about the suffering caused to him by turning are compounded by fact that the night sitter was late that night (and appeared to have been called in from a "Saturday night out"), and - more importantly - carer was persuaded to go and rest, and patient died while she wasn't by his side.
Carer received frequent post-bereavement visits from DNs, and the senior DN still occasionally calls in to see how she is. She appreciates these visits very much, because they help her feel a sense of connection to her late husband.
Overall impression:
Carer felt generally very well-supported, but in her recollections of her husband's illness, her experiences on his final night dominate, and appear to have led to lasting distress. There is an impression of her being pulled in opposite directions by her feelings about that period. On one hand she feels gratitude for the personal care and support DNs gave her and her husband (and continue to give her), and she sees herself as unable to challenge their expertise. On the other hand, she is clearly aware that the situation on his last night was handled in - to say the least - an inappropriate fashion, with staff more concerned to "follow instructions" (portrayed as mainly there to protect them from criticism re bed sores) than to listen to her and what she knew to be best for her husband. The lateness of the night sitter only compounded matters. Carer is also upset because she was not present at her husband's death but this seems to be less of an issue than the way he was "tossed about" by nurses turning him.
Her gratitude to DNs for general level of care, and her unwillingness to challenge expertise, left her in an impossible dilemma on night of husband's death. Her hesitancy in raising these key aspects of her experience as a Carer suggest a continuing sense of conflict in her feelings towards the OOH DNs - she seems to feel guilty about complaining of their poor treatment of her and her husband on his last night.