Nursing care for patients on the edge of life : Nurses’ experiences of nursing care in intensive and nursing home related to questions of withholding or withdrawing curative treatment

Sammanfattning: Aim: The overall aim of this thesis was to deepen the understanding of nursing care for seriously ill patients on the edge of life in intensive care unit (ICU) and nursing home when questions were raised whether to withhold or withdraw curative treatment. Method: All studies were conducted in a qualitative frame of reference with interviews of nurses in two contexts in Norway; group interviews of 14 nurses in an ICU (study I, III), and individual interviews of 14 nurses in two nursing homes (study II, IV). Data were analysed with interpretative phenomenology (I, III, IV) and phenomenography (II). Findings: The nurses’ descriptions of the patients on the edge of life were interpreted as ‘being in a twilight zone’, a state between living and dying. The patients’ situation were understood to be very burdensome as they were mostly ‘voiceless’ and unable to call for, or refuse help and totally surrendered to other people’s devices. Their state was strained by extensive suffering; pains and bodily afflictions, loneliness, confusion and without control and dignity (I). Their need for nursing care was comprehensive (I, II) with an overall need for dignity (II), which included having the needs for preparedness, human relationship, comfort and safety met (II). The patients’ inabilities to express themselves clearly involved major challenges for nursing care (I - IV). Good nursing care was described as caring for the individual patient based on his/her situation and needs. The nurses experienced themselves to be of imperative importance for the patient’s living or dying (III, IV) and their interpretation of the patient’s condition was crucial (III). Their commitment and drive to help was high, they knew what good nursing care was for the patients (I - IV), and they were proud when they succeeded in their care (III, IV). An outstanding finding was the nurses’ experiences of ambiguity of both certainty and uncertainty. Being certain mostly seemed to concern nursing care related to the patient’s needs and situation (I, II), and uncertainty to what was ‘right’ to do with regards to withholding or withdrawing treatment (III, IV). They often experienced loneliness, too much responsibility, a vulnerable professional pride, and being pulled between opposite poles when they struggled to give good nursing care (I - IV), but too often they failed (II, IV). This demanding situation sometimes led to the nurses’ use of several self-protecting strategies. Whether the patients could receive good nursing care or not did not only depend on the single nurse, but was also anchored in opportunities and hindrances on a relational and an organisational level (I – IV). There were many congruities in patterns in the experiences of ICU - and nursing - home - nurses with regards to the situation and needs of patients on the edge of life, and good nursing care. Congruities were also found regarding being a nurse when caring for these patients, and nurses’ opportunities and hindrances for carrying out good nursing care. Conclusion: This thesis shows that nursing care was experienced as being of crucial importance to the patients on the edge of life, and the nurses knew very well what good nursing care was for them. However, the nurses’ opportunities to perform good nursing care depended on several preconditions and were restricted by hindrances on different levels, which have to be overcome in order to fulfil patients’ needs and nurses’ ambitions of giving good nursing care. As such, this thesis highlights a wide-ranging understanding of nursing care for these patients, which should challenge individual nurses, but also other health care workers, leaders and politicians.