Suffering. Heather M Davies

Suffering. Suffering is a whole person concept and the experience of suffering is complex, personal and multi dimensional. Suffering is not necessarily a perception or sensation but an evaluation of the significance of the suffering (Kahn and Steeves, 1986; Cassell, 1992)

Behavioural response to Suffering. Two broad states of suffering: 1.Enduring – to survive, to live, to die. 2.Emotional suffering - emotions released. Process not linear and the person may move between states. Person will not move from enduring to emotional suffering until tentatively ready to recognise loss. (Morse, 2001).

Nurses role. Identify what suffering means to the individual. Allow the person to endure and function when in that stage but offer comfort when emotionally suffering. Symptom control. Build a relationship to achieve all this and be available.

Research Aims The research aims were to explore palliative care nurses': - Understanding of suffering and their experiences of working with patients who are suffering. Management of the nurse-patient relationship with patients who are suffering. Personal experience of working with patients who are suffering.

Methodology. Heidegerian phenomenology. Thirty one palliative care clinical nurse specialists interviewed using semi structured interview. Interviews transcribed and analysed.

Study findings. Understanding suffering Management of suffering The nurse – patient relationship Stress Coping

Suffering. Difficult to define Mental picture of suffering 'So it’s difficult to pin down saying what I think suffering is. I mean it’s not always vocalised. It’s sometimes something that we see and are aware of and feel but don’t have it sort of said. Sometimes it’s said sort of quite openly. You know, I’m in pain, I am suffering, I‘m hurting.' Interview 16 Mental picture of suffering 'It's really difficult to describe. I see some patients and you think oh they are really suffering but there is never anything specific it's always everything in a whole, psychological issues, there’s physical issues, there’s a picture of suffering. Patients who are sad, who are distressed and that’s what I link in as being suffering but I don’t know whether that it is, what is, what suffering is. It's having an image of a patient who is suffering with their diagnosis or struggling to cope with their diagnosis'. Interview 9

Difficulties with describing suffering. Loss Subjective and objective. Physical, psychological social. Instrumental definitions.

Developing nurse-patient relationships Communicating – introduction, social interaction, giving patients time to talk, rapport Developing relationships - self disclosure, developing trust and confidence, time Person centred care – reciprocity, empathy, caring, partnership Presencing - being there, involvement

Barriers to developing nurse-patient relationships Personal - lack of rapport, superficial relationships Organisation - lack of time

Personal Impact of working with patients who are suffering: Difficulties. Suffering -witnessing suffering, unnecessary suffering, not being able to alleviate suffering, responsibility for relieving suffering Relationships -age of patient, identification with patient, personal involvement Job structure -communication difficulties/poor teamwork, work environment Personal-problems outside work, taking work home, changed/ aged because of job Burnout

Personal Impact of working with patients who are suffering: Coping. Suffering- alleviating, patients not palliative care nurse specialists suffering, acceptance/perspective on suffering, realistic expectations of role Relationships -setting boundaries on involvement, personal, colleagues/good teamwork

Personal Impact of working with patients who are suffering: Coping. Job structure -not taking work home, ongoing education, clinical supervision, case conferences and reflection leading to increased knowledge and skills, management of work other work activities Personal- maturity/ life/job experience, outside activities, looking after oneself, putting things into perspective/acceptance, recognising signs of stress and taking action, personality, faith, job a privilege/job satisfaction

The personal impact of working with patients who are suffering Coping with the personal impact of working with patients who are suffering 'It’s about experience, it’s about learning about it and what it means. So it’s putting all the experiences I’ve had to some use to make it better or different for the person I may be dealing with and for me as well.' Interview 16

Conclusion. It is clear from this study that understanding and managing suffering develops through experience. The palliative care nurse specialists' views on suffering informed their care particularly in terms of the nurse patient relationship. However, it also changed their life view and influenced their personal development. They ultimately learnt how to cope with the job through positive reappraisal and developing a coping strategy that helps them to be realistic in their expectations of what they can achieve within the role. They had learnt to manage the nurse-patient relationship and themselves over time and with experience.

Conclusion. The findings reflect and reinforce other work in the areas explored and thus demonstrate the importance of these in practice. The connections between understanding suffering and how this influences patient care and the personal impact of working with patients who are suffering is clear and an important contribution to understanding suffering and care of the dying.