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The Views of the Bereaved Relatives?

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The Views of the Bereaved Relatives? Research BMJ Support Palliat Care: first published as 10.1136/bmjspcare-2014-000810 on 17 January 2017. Downloaded from How well do we currently care for our dying patients in acute hospitals: the views of the bereaved relatives? Catriona Rachel Mayland,1 Helen Mulholland,1 Maureen Gambles,1 John Ellershaw,1 Kevin Stewart2 1Marie Curie Palliative Care ABSTRACT BACKGROUND Institute Liverpool (MCPCIL), Background The National Care of the Dying Care of dying patients is part of the core Cancer Research Centre, — University of Liverpool, Liverpool, Audit Hospitals (NCDAH) is used as a method business for acute hospitals. Although a UK to evaluate care for dying patients in England. European study demonstrated national 2 Clinical Effectiveness and An additional component to the 2013/2014 variations in the proportion of hospital Evaluation Unit, Royal College of 1 audit was the Local Survey of Bereaved Relatives deaths, a significant proportion of Physicians, London, UK Views using the ‘Care Of the Dying Evaluation’ patients within many developed coun- Correspondence to (CODE) questionnaire. tries, including the UK, continue to die in – Dr Catriona Rachel Mayland, Aim Within the context of the NCDAH audit, to hospitals.2 4 Indeed, for some patients, Marie Curie Palliative Care Institute Liverpool (MCPCIL), evaluate quality of care provided to dying the acute hospital is their preferred place Cancer Research Centre, patients and their families in acute hospitals from of care and death, as home represents a University of Liverpool, 200 the perspective of bereaved relatives. ‘lonely and frightening place’.5 A recent copyright. London Road, Liverpool L3 9TA, Design Postbereavement survey to bereaved Scottish study, establishing the likelihood UK; [email protected]. relatives. of death within 12 months for a cohort uk Setting/participants For acute hospitals of hospital inpatients, showed 28.8% wishing to participate, consecutive ‘expected’ patients died during this period. Deaths Received 7 November 2014 adult deaths occurring between 1 May and 30 during the actual admission accounted Revised 11 December 2015 Accepted 1 September 2016 June 2013 were identified and the CODE for 32.3% of all deaths during the questionnaire was sent to the next-of-kin. follow-up year.6 Hence, ensuring good Results From 3414 eligible next-of-kin, 95 quality of care and support is provided (2.8%) were excluded due to being involved in a for all dying patients within the acute http://spcare.bmj.com/ complaint procedure and 1006 (29.5%) due to hospital remains fundamentally import- insufficient next-of-kin details. From the ant. This was highlighted further within remaining 2313 potential participants, 858 the Neuberger Review of care of the returned a completed CODE questionnaire dying in England which recommended a (37.1% response rate). Generally, symptoms need for improved skills and competen- were perceived to be well controlled with 769 cies for clinical staff caring for dying (91%) participants reporting that either no pain patients within the hospital.7 The future was present or only there ‘some of the time’. plan within the UK is for individualised on September 26, 2021 by guest. Protected Unmet information needs, however, was a patient end-of-life care plans. There are recognised area for improvement, for example, concerns, however, about the potential 230 (29%) reporting having a discussion about gaps in the provision of patient care hydration would have been beneficial. while these are being developed and the Conclusions Adopting a postbereavement lack of support for generic healthcare 8 To cite: Mayland CR, survey to NCDAH appears to be feasible, staff with the withdrawal of the Mulholland H, Gambles M, acceptable and a valuable addition. On the Liverpool Care Pathway for the Dying et al BMJ Supportive & . whole, the majority of participants reported Patient (LCP), an integrated care pathway Palliative Care Published please include good or excellent care. A small but significant which was used to support patient care in Online First: [ 9 Day Month Year] minority, however, perceived poor quality of the last days of life. doi:10.1136/bmjspcare-2014- patient care with clear and timely communication In order to improve care, we need to 000810 urgently needed. be able to evaluate the current quality of Mayland CR, et al. BMJ Supportive & Palliative Care 2017;0:1–10. doi:10.1136/bmjspcare-2014-000810 1 Research BMJ Support Palliat Care: first published as 10.1136/bmjspcare-2014-000810 on 17 January 2017. Downloaded from care.10 One method adopted within England to help First, a case note review was conducted and the fol- evaluate care for dying patients within the acute hos- lowing inclusion criteria were applied: pital setting is the National Care of the Dying Audit— ▸ patient over 18 years of age; Hospitals (NCDAH) programme.11 The programme ▸ death occurred in acute hospital between 1 May and 31 initially started in 2006/2007 and to date four July 2013; and NCDAH Reports have been published. The process ▸ patients under the care of the hospital for more than involves a retrospective audit of organisational and 24 hours prior to death. clinical elements of care in the dying phase and Initially, patients were excluded by individual hospi- enables clinical teams and executive boards of individ- tals governance teams where the death was sudden or ual hospitals to measure themselves against a ‘national unexpected, for example, death occurred in accident benchmark’ of care for the dying in acute hospitals. and emergency department; as a result of accident or This helps identify areas of unmet need and issues overdose; suicide was suspected; or where cause of relating to organisational or environmental factors, death unknown. The clinical audit lead of each hos- which can be formulated locally into an action plan as pital then reviewed on a case-by-case basis those part of a continuous quality improvement deaths where the following potentially excludable programme. ICD-10 codes were present: An additional and optional component to the ▸ acute myocardial infarction (I21, I22); NCDAH, England 2013/2014 was the inclusion of ▸ pulmonary embolism (I26); the Local Survey of Bereaved Relatives Views (hence- ▸ pulmonary aneurysm (I281); forth referred to as ‘Local Survey’). This provided ▸ sudden cardiac death (I461); acute hospitals with the opportunity to seek the views ▸ aortic aneurysm (I71); of bereaved relatives or friends about their family ▸ injury, poisoning or external causes (S00–T98). members’‘last episode of hospital care’. These views This process was supported and guided by informa- were captured using ‘Care Of the Dying Evaluation’ tion published from the National End of Life Care (CODE),12 a 41-item self-completion postal question- Intelligence Network.16 The case note review com- naire. CODE represents a shortened, more user- prised of collecting anonymised demographic data friendly version of the original instrument, (gender, age, primary diagnosis, ethnicity, religious ‘ — Evaluating Care and Health Outcomes for the affiliation) for each patient, as well as clinical informa- copyright. Dying’ (ECHO-D) and both questionnaires specific- tion identified to reflect best care for the dying ally link to key components of best practice for ‘care patient, for consecutive deaths during May 2013. of the dying’ (last days of life and immediate postber- Participating sites with fewer than 50 cases for May eavement period). Additionally, ECHO-D and CODE could continue to include consecutive cases from June – have been assessed for validity and reliability.12 15 and July until they had at least 50 audit cases or had Individual questions ask about aspects of symptom reached 31 July with fewer than 50 cases if that was control, communication, provision of fluids, place of the maximum eligible number available. Data col- death, emotional and spiritual support using dichot- lected included whether or not the patient was recog- omous and Likert-scale response options. nised to be dying by the multidisciplinary team; and whether or not there was documented communication http://spcare.bmj.com/ AIM about the patients’ plan of care in the dying phase. Within the context of the NCDAH, England 2013/ Additionally, data were collected about whether or 2014 audit, the aim was to evaluate the current not anticipatory medications were prescribed for quality of care provided to dying patients and their likely end-of-life symptoms; whether there were clin- families in acute hospitals from the perspective of ical protocols in place to guide this prescribing; and bereaved relatives. In particular, the key focus was on: whether or not there was documented communication ▸ Symptom control about key end-of-life discussions. on September 26, 2021 by guest. Protected ▸ Communication For the Local Survey, the consecutive sample of ▸ Dignity and respect and family support deaths matched the above inclusion and exclusion cri- In addition, exploration of initial comparisons teria with the exception that only those deaths occur- between the bereaved relatives’ perceptions about ring between 1 May and 30 June were included. All these key aspects of care with the overall findings cases where a formal complaint was pending were from the clinical case note review was sought. excluded due to the fact that the family member had already taken steps to express dissatisfaction with care METHODS and sending the CODE questionnaire could be per- The overall study design was a postbereavement ceived as insensitive. For hospitals which chose to survey, using the ‘CODE’ questionnaire, with the undertake the Local Survey, bereaved relatives were next-of-kin to patients who had died within the acute invited to complete the CODE questionnaire no less hospital setting. than 3 months following the death. There was also an 2 Mayland CR, et al. BMJ Supportive & Palliative Care 2017;0:1–10. doi:10.1136/bmjspcare-2014-000810 Research BMJ Support Palliat Care: first published as 10.1136/bmjspcare-2014-000810 on 17 January 2017.
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