Living with dying Patients and carers experiences of living with lung cancer. Dr Donna Fitzsimons, Lesley Rutherford & Jill McAuley

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1 Living with dying Patients and carers experiences of living with lung cancer Dr Donna Fitzsimons, Lesley Rutherford & Jill McAuley

2 Study Aims To explore the experiences of patients living with lung cancer. To explore the experience of informal carers in this context.

3 Objective To identify key features of this experience in order to inform service providers and commissioners and to promote more personcentred services for this population.

4 Methodology Qualitative approach Semi-structured domiciliary, interviews Purposive sample of 23 participants; 12 patients /11 carers Interviews were tape recorded and transcribed verbatim. Analysed using a content analysis approach

5 Living with dying I know it can t be cured but I mean it, I will live as best as I can for as long as I ve got. I won t give up ( patient)

6 Emotional turmoil Pervasive uncertainty Struggle for control Facing loss Symptom burden Financial strain Information needs Themes

7 Emotional roller coaster So the emotional side of it is a big, big factor and it varies from appearing to be very open; dealing with this and that, but at other times the pendulum swings to the other side and that s the hard bit... there are lots of ups and downs there ( Carer)

8 Trying to come to terms with it yourself; In bed at night, breaking down crying. You re a big fella, you never cried before. I don t think there s a day that has gone past that I haven t cried to myself, even in bed at night (Patient)

9 Is anyone listening? But I feel let down on my own Doctor s part that it took a year, because its terminal now. (Patient) I could have sat down there and cried. It didn t matter how often I was going to him, I was getting no better; no matter what antibiotic he gave me. That s why I had to change to another doctor. (Patient)

10 Struggle for control I can t explain it, because there was that much going through my head. It was hard to take in this all in the space of 20 minutes. I don t know what would have happened if the Macmillan nurse hadn t been there.b Because if I had walked out of the surgery or left that bed and say I d got into a car, my mind was still blank. I honestly don t know what would have happened (patient)

11 Control? I couldn t sleep and as soon as I wakened in the morning this terrible thing just hit me. You know it was like a tunnel and it was all elastic bands and you couldn t get out. ( carer)

12 Struggle for control I m pretending I m cold, if you know what I mean. I can t explain it ( carer) I can t talk about it and I just tend to say; don t talk about it.stay positive and don t be talking. When we try to talk both of us just end up crying and its not talked about because we wind up upset ( carer)

13 Pervasive Uncertainty Everything goes through my head from I m gonna die, maybe I m not going to see my grandchildren growing up, to I ll not be there to help my wife. ( Patient) I couldn t see reason, and I was thinking every thing. I can t get my thoughts straight because I m thinking the worst, I m thinking, how am I going to cope with his oxygen? How s he going to cope if we to get people in to look after him? I m thinking, what s down the line instead of thinking, Today s a good day, let s just go for that. (Carer)

14 Watchful waiting) Watchful waiting He s been complaining a lot of pain in his right side and when he complains of that I think oh God is this the cancer? Is it spreading? Is it? If he says anything; if his feet swell up; it hits you then. Oh God it s the cancer, it s getting worse ( carer)

15 Facing Loss My life has stopped; I can t walk my dogs, they re too big for me. I can t do my garden; I can t do anything. ( patient) I know I m not getting better, And I know that it will win in the end. It s not being dead that worries me it s what s gonna happen before that? I don t know how I ll cope with that

16 SYMPTOM BURDEN I didn t think I was losing much weight, but you knew rightly when you looked in the mirror, you were. My skin was all hanging on me and I thought I was about 100 years old. You felt you were like something out of those camps; you know. Starving. ( Patient) I m getting on his nerves because I m force feeding him and I just want to open his mouth and put something in and say; just eat it, I don t care if you like it or not! ( Carer)

17 Symptom burden I was waking up in the middle of the night and I couldn t breathe. It was like someone had put a plastic bag over my head; that was kind of scary (Patient) I felt tired and increasingly fatigue has taken over my life ( Patient)

18 Financial strain Well I was really disappointed in the system because he was never on the sick and yet we had to wait three months for money. I don t know what would have happened to us if we hadn t had savings; three months living on nothing and a mortgage

19 Information Needs

20 Service provision: clear If you take bad, who do you phone? The doctor, the hospital or what? What do you do? No one s told me anything. Nobody seems to care. You are on your own and that s it (Patient) I Feel abandoned pathways???

21 Service Provision: Role Confusion Social worker Lung cancer nurse District nurse Marie Curie Nurse Hospice nurse GP Macmillan nurse

22 Comments re service provision: Out-pt chemotherapy You come up here and its like Piccadilly circus. You are in the middle of a traffic jam and they re bleeping and calling out names. You are just one of the millions which makes you feel less important ( Patient)

23 Out-pt chemotherapy Waiting When the patient goes and has their bloods done and sees the doctor and from that time until their chemo arrives is a huge problem

24 Out-pt chemotherapy There was one day we were up from 8 o In the morning and we weren t getting ho 6 o clock ( patient) and.waiting

25 Carer Needs It s a lonely place and a difficult one, because you ve never been here before.there s no real script ( Carer) When she says; he s my rock. I can assure you it gets more and more difficult because I don t feel like the rock I may have been in the past ( carer)

26 Recommendations Improved GP education and referral systems to allow rapid access Need a key worker role Systematic and co-ordinated information pathway Professional advice re financial and social issues. Supportive strategies & intervention to relieve symptoms

27 Recommendations: Carers Assessment of carers needs Equitable & accessible support services for carers to address their practical, social and emotional needs. Develop bereavement support services

28 Any Questions????

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