Hospital patients’ perspectives on what is essential to enable optimal palliative care: A qualitative study

Abstract

Background: The majority of expected deaths in high income countries occur in hospital where optimal palliative care cannot be assured. In addition, a large number of patients with palliative care needs receive inpatient care in their last year of life. International research has identified domains of inpatient care that patients and carers perceive to be important, but concrete examples of how these might be operationalised are scarce, and few studies conducted in the southern hemisphere. Aim: To seek the perspectives of Australian patients living with palliative care needs about their recent hospitalisation experiences to determine the relevance of domains noted internationally to be important for optimal inpatient palliative care and how these can be operationalised. Design: An exploratory qualitative study using semi-structured interviews. Setting/participants: Participants were recruited through five hospitals in New South Wales, Australia. Results: Twenty-one participants took part. Results confirmed and added depth of understanding to domains previously identified as important for optimal hospital palliative care, including: Effective communication and shared decision making; Expert care; Adequate environment for care; Family involvement in care provision; Financial affairs; Maintenance of sense of self/identity; Minimising burden; Respectful and compassionate care; Trust and confidence in clinicians and Maintenance of patient safety. Two additional domains were noted to be important: Nutritional needs; and Access to medical and nursing specialists. Conclusions: Taking a person-centred focus has provided a deeper understanding of how to strengthen inpatient palliative care practices. Future work is needed to translate the body of evidence on patient priorities into policy reforms and practice points.

Strengthening palliative care in the hospital setting: a codesign study

“…Embedded within these actions are a series of policy, practice, education and research recommendations at the macro, meso and micro levels. Given the complexity and diversity of palliative care needs and hospital environments (ranging from intensive, critical and high-dependency care units through to all ward areas and emergency departments), strengthening inpatient palliative care provision will benefit from: executive support declaring the importance of palliative care in hospitals; 33 support for each ward to deliver care in accordance with patient and family identified areas of importance; 11,12,14 integrated use of evidence-based tools; and validated and standardised approaches to measure patient and family outcomes and experiences to inform quality improvement, national benchmarking and ongoing models of care provision.…”

“…*Domains noted to be most important for optimal inpatient palliative care informed by previous research 11,12,14 There are many examples of excellent palliative care within the hospital setting. 7,13,36 The challenge is to enable this experience to be possible across all wards, irrespective of location or population.…”

“…25 A number of prospective and systematic steps were undertaken to derive information that summarised the state of the science and questions to be posed at the workshop including: systematic reviews of patient and family data outlining what enables optimal inpatient palliative care; 11,12 and a qualitative study to better understand published domains of importance, implications for practice and relevance for the Australian population. 14 The outcomes from the meta-inference of these data 26 formed the basis of the information packs for this co-design workshop ensuring end users (patients and families) remained central to all work achieved. This resulted in synthesised data representing what patients with palliative care needs (n=1233) and their families (n=3818) outlined as important for optimal hospital based palliative care 26 (exploring the care pathway and capturing experiences) to enable those present at the workshop (clinicians, policy experts, researchers and consumer representatives) to co-design strategies to improve care experience based on this understanding.…”

“…To facilitate the modified nominal group process, each participant was provided with an information pack detailing key domains of importance for optimal inpatient palliative care. 11,12,14 Each participant was assigned to one of four groups designed to be reflective of all perspectives participating (medical, nursing, allied health, policy, academic and consumer). Three questions were provided to guide thinking and discussions:…”

“…10 For the last 30 years, patients and families have consistently reported the elements required for optimal inpatient palliative care with these being: Effective communication and shared decision making; Expert care; Adequate environment for care; Family involvement in providing care; Financial affairs; Maintenance of sense of self / identity; Minimising burden; Respectful and compassionate care; Trust and confidence in clinicians and Maintenance of patient safety and prevention of harm. 7,[11][12][13][14] However, delivering optimal, person-centred palliative care within acute, episodic care environments with varied access to specialist palliative care service support is challenging. Poor inter-disciplinary teamwork and limited communication combined with a lack of early identification of patients with palliative care needs all contribute to sub-optimal palliative care provision.…”