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The views and opinions expressed in our blog series are those of the authors and are not necessarily supported by CareSearch, Flinders University and/or the Australian Government Department of Health.
Caring for people with palliative care needs is a core component of health care provision within the hospital setting. This care can be considered in relation to two groups of patients (and their families/carers):
The centrality of the role of hospitals in provision of palliative care is often not well recognised and care provision can be suboptimal. [3-5] The reasons for this are complex and varied but include: ineffective communication, poor symptom management, too little input into decision making, complexity of working across multiple teams within multi-level organisations and a lack of safety and quality indicators to inform improvement efforts. [6-9]
This is something that patients notice, and it impacts on their experience at the end of life:
Where it lacked is that unless you were always on the ball for your own case, there could be a lot of mistakes because ... they are put down on computers, you don't know what is written there so you'll have to constantly be on the ball. But if somebody's very ill, or very tired or uneducated, it's not easy to be on the ball (Patient 11, 72yr female with malignancy)
I like to be treated as a normal well individual. Because that's where I keep my consciousness…Is that I am well, all is well, in terms of keeping myself positive…I've found a way to be very... to live very well, in the state that I'm in. Which is now fairly rapidly deteriorating (Patient 16, 60yr male with non-malignant illness)
I think it would help if when the doctors doing their rounds…if they could give you some sort of indication of when they'd be in the ward … it's like working on another planet. Everything else in the outside world just gets turned off...you still need to realize that people need to go to work and have that appointment to talk about their mother (Patient 13, 61yr female with non-malignant illness)
When considering how to enable improvements in care, it is important to start with understanding what is most important from the perspectives of patients living with palliative care needs, and their family members/carers. [10-11] What is it they need to feel safe and well cared for in our hospitals? Research has demonstrated the need for: 1) respectful and compassionate care; 2) effective communication and shared decision making; 3) effective teamwork; 4) enabling family involvement; 5) maintaining role, meaning, and identity; 6) excellence in physical care; 7) impeccable assessment and care planning; 8) effective symptom management; 9) technical competence; 10) patient safety; 11) supported access to senior clinicians; 12) patient-focused structural factors; 13) family-focused structural factors; and 14) cleanliness to support infection control with each of these 14 domains (Figure 1) informed by key clinical practice points (n=68). [12]
Understanding how to drive reform to optimise these domains of importance, within busy and varied hospital environments caring for diverse populations across metropolitan and rural contexts, is a critical next step if the best evidence-based end-of-life care is to be afforded to everyone. Keeping the patient and family/carer perspective of their quality of care at the centre of all we do, is critical in shaping care that will enable better outcomes and experience for those we care for.
References
Dr Claudia Virdun, Senior Research Fellow, Faculty of Health, School of Nursing, QUT