1. Benefits and burdens of hospital admissions and their influence on preferences to return to hospital: a mixed methods study

2. My experiences… Many patients keep coming back to hospital
Some have to be “encouraged” to consider care and death at home
Cultural imperatives about the role of the hospital is rarely considered in the Western context of palliative care
Inadequate community services are often blamed for not keeping people out of hospital

4. Hospitals are considered an unsuitable place of care for those with palliative care needs
Inadequate symptom control and burden
Poor communication with health professionals
Difficulties with decision-making related to patient care and management
Inadequate environment
Interpersonal relationships with health professionals

5. Knowledge is limited to discrete aspects of care
Limited evidence from patients
No attention paid to the benefits of being in hospital

6. Sequential, mixed methods study…..

7. Benefits and burdens: Phase 1
To explore patients views regarding expected and actual benefits and burdens associated with being in hospital
Semi-structured interviews (n=14) of patients with palliative care needs admitted to ACH
Interviewed twice
Within 48 hours of admission to hospital
Within one week of discharge
Thematic analysis of the data

8. Burden of being in hospital…
Challenges with:
the physical surroundings
the impact on social relationships with other patients, families and health professionals
the cultural milieu of the hospital setting.
Almost all participants described a
range of factors associated with the environment
which impacted negatively on their experiences
of hospitalisation.

9. I got the problem with the bladder
I got the problem with the bladder. I have got to go to the toilet very often for pee and if you got four people in the room, usually it is four people in the room. One is crying and one is snoring. The toilet is 90% occupied and you can’t rest. (60-year- old man with cancer) I hate being with a whole lot of people. I can’t stand a whole lot of squealing people especially when they are sick. Being around other sick people doesn’t help me. It makes me worse and I just want to get away and be in a private room. (57-year-old woman with cancer)

10. Social relationships….
What I found really hard this time was that I had a space around the corner as you go into the ward and what I found really hard was nobody drew their curtains at all so I never got to look out the window the whole week, everybody had their curtains drawn. (69-year-old woman with cancer)
Cultural milieu…
You can’t go home at night. You can’t do this and you can’t do that. You see I have always been very active. I’m an active person and you are captured you know. (78-year-old man with chronic obstructive pulmonary disease (COPD))

11. Benefits extend beyond treatment of the illness to include:
Feeling better and/or getting better
Being cared for and feeling safe
Relief for family
Getting help to manage at home
Reasons for admission were largely related to inadequate symptom management or complications of treatment or the illness itself. Most participants had their expectations met in terms of how they were feeling on admission.
However all experienced benefits of being in hospital that extended beyond medical treatment. IncludingL

12. Feeling better and/or getting better…
I always feel like I’m really, really great when I come out of hospital and it makes me sort of feel like when I come out I know what I have got to do to make me feel better. (69 year old woman with cancer)
Being cared for and feeling safe…
I feel safe here because I can press the buzzer three times and know that somebody is going to come running whereas I can’t do that at home. (57 year old woman with cancer

13. Getting help to manage at home…
The hospital have been marvellous like in respect of helping me to stay at home. They have given me a hospital bed and they have helped me with things around the home to make my life easier like raise my chairs and rails. (77 year old man with cardiac disease)
Relief for family…
“It would have been on our conscience if we had…while she was at home not knowing what to do. We got her to hospital and she came out better.” (Husband of 75 year old woman with cancer)

14. Despite the difficulties, all but one expressed a preference to be in hospital rather than remain at home…

15. Policy supports palliative care outside the hospital setting
A good death cannot be achieved
Cost savings can be achieved by
Reducing hospital length of stay
Focusing on avoidable or inappropriate admissions
Investing in community based services (rather than hospital)
Supporting patient preferences to be cared for and die at home
Palliative care in hospital is a “problem” to be solved

16. Phase 2: preferences to return to hospital
Quantitative
Questionnaire developed using findings from phase 1: benefits, burdens and feeling safe
Face to face survey of 116 patients with palliative care needs admitted to ACH
Participants were surveyed close to or at the time of discharge
Statistical analysis of data

17. Those with cancer were less likely to have hospice involved
Few particiapants thought community services had a role in enabling them to remain at home
Those with cancer were less likely to have hospice involved
Those with cancer placed a significantly higher priority on
receiving information about their illness and having tests and investigations
Knowledge of the incurable nature of the illness did not influence a decision to come to hospital
50% of patients were advised to go to hospital by a health professional so knowledge or lack of knowing that the illness was not treatable did not deter either the patient or the health professional which makes one question what people believe the hospital is there for….?More than just treating the illness
non-cancer diagnosis and those aged over 75 years (x² (1, n=116)=10.19, p=.00).

18. Influences on a preference to return to hospital….
Experiences of more benefit being in hospital
Those living in deprived areas (F (4, 109) = 3.15, p=.017).
Younger people (F (4, 109) =4.44, p=.00)
Experiences of more burden being in hospital
Those from Asian or Pacific cultures (F (2, 111)=7.78, p=.000)
Those with a non-malignant diagnosis felt less safe in hospital (p=.04).
‘Feeling safe’ was found to be a statistically significant (B=0.14, p=0.03) contributor to a preference to return to hospital.

19. Summary…
Experience of burden is not a deterrent to wanting to return to hospital
Patients experience benefits being in hospital which extend beyond treatment of the illness
Deprivation, age, diagnosis and ethnicity influences experiences of benefit and burden being in hospital
Feeling safe is a significant predictor on a preference to return to hospital

20. What is the role of the acute hospital as a provider of palliative care?
Is home really the preferred place of care for all?
Is the acute hospital a legitimate provider of the “good death”?
How does deprivation influence home as a place of care and place of death?

21. PhD Advice…. Learn to “immerse yourself in the literature”
It’s a slow jog not a sprint
Expect life to get in the way
It becomes a way of life so make it enjoyable
Don’t let it stop you living: get a really portable computer
Sister diagnosed with breast cancer
Brother in law diagnosed with cancer
Father in law died in the UK (in hospital with poor experiences)
I went to three European conferences, one I flew business class for the very first time
My daughter got married
My niece had the families first great grand child
Moved house…..twice
But despite people reminding me I could now get my life back….I don’t think I ever truly stopped living.