Benefits and burdens of hospital admissions and their influence on preferences to return to hospital: a mixed methods study Jackie Robinson Nurse Practitioner and Service Lead Clinician, Auckland Hospital Palliative Care Team Senior Lecturer and PhD Candidate, School of Nursing, University of Auckland

This was me before I began my PhD… This was me before I began my PhD….the thoughts began back in 2010 when I decided it was now or never. The time was right and the ducks were in a row, my kids had left home (get yourself a hobby they cried) and MG had joined the department and provided me with the inspiration to embark on a PhD journey. Instead of cake decorating I started on a challenging and inspirational journey ……immerse myself in the literature was the first piece of advice…..so I began reading and reading and reading…….

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

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

And…. 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 Robinson J, Gott M, Gardiner C and Ingleton C (2016) The 'problematisation' of palliative care in hospital: an exploratory review of international palliative care policy in five countries. BMC Palliative Care. Jul 25;15:64. doi: 10.1186/s12904-016-0137-0

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

A balance of benefits and burdens.... Challenges with: the physical surroundings the impact on social relationships with other patients, families and health professionals the cultural milieu of the hospital setting. Extends 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 All expressed a preference to be in hospital rather than remain at home Robinson J, Gott M, Gardiner C and Ingleton C (2015) The impact of the environment on patient experiences of hospital admissions in palliative care. BMJ Supportive Palliative Care. doi: 10.1136/bmjspcare-2015-000891. [Epub ahead of print] Robinson J, Gott M, Gardiner C and Ingleton C (2015) A qualitative study exploring the benefits of hospital admissions from the perspectives of patients with palliative care needs. Palliative Medicine. Sep;29(8):703-10. doi: 10.1177/0269216315575841.

Choosing a place of care....

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

Circumstances surrounding the admission… Few particiapants thought community services had a role in enabling them to remain at home Those less likely to have hospice involved non-cancer diagnosis and those aged over 75 years (x² (1, n=116)=10.19, p=.00). Those with cancer placed a significantly higher priority on receiving information about their illness (t(114)=2.03, p=.04) receiving tests and investigations (t (114)=2.37, p=.02) Knowledge of the incurable nature of the illness did not influence a decision to come to hospital Robinson, J, Gott M, Frey R and Ingleton C. (2017) Circumstances of hospital admissions in palliative care: a cross sectional survey of patients admitted to hospital with palliative care needs. Palliative Medicine (Under Review) 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

Predictors of patient related benefit, burden and feeling safe…. 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) predictor to a preference to return to hospital. Robinson J, Gott M, Gardiner C, Frey R and Ingleton C. (2017) Predictors of patient related benefit, burden and feeling safe in relation to hospital admissions in palliative care: a cross sectional survey. Palliative Medicine. First published: September 27, 2017. DOI: 10.1177/0269216317731991

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