National Palliative Care Week: CODE project

Monday, May 20, 2019

May 19-25 is National Palliative Care Week with this year’s theme asking what matters most? Care at the end of life has undergone significant change in Queensland in recent years under the Statewide Strategy for End-of-Life Care 2015 which forms part of Queensland Health’s commitment to ensuring all Queenslanders have access to safe and high-quality care at the end of their lives. To mark the week, we’re highlighting some of the best end-of-life care projects currently underway in Queensland.

The projects under the spotlight this week were supported by our second round of SEED (Support, Explore, Excel and Deliver) funding. The SEED funding program is designed to stimulate innovative approaches to the delivery of care as part of the statewide strategy. Our first highlight for the week is the Care of the Dying Evaluation (CODE) Project: A survey of bereaved persons in an Australian acute care setting.

Metro North Hospital and Health Service is using the CODE questionnaire, validated for use in the United Kingdom, to evaluate the quality of care provided to dying patients and their families at the Royal Brisbane and Women’s Hospital. The unique tool captures the perspective of bereaved persons and can assess key components of best practice care including symptom control, communication, dignity, respect and family support.

Dr Carol Douglas, Director of Palliative Care at the RBWH said end-of-life care was often the 'forgotten part'. "We live in a ‘cure paradigm health world’ and [end-of-life care] is about providing the very best clinical care. And being able to support people and value their wishes and provide them with choices at the end of life but ensure that their dignity is always maintained. That’s a very tall order in the health system that we work in. Clinicians need to understand that this is a very valuable part of the care that they deliver.”

Dr Carol Douglas: It's a tool that allows us to not so much interview but survey the experiences of grief people about the experience they had around the dying process. And that's something that's not done either at all or very well. It's a 41-item tool, open and closed questions, but specifically looks at the kinds of communication that have been applied and talking to the patient and family about what to expect and what's happening, whether the pain was adequately met symptoms were adequately met, really was the dignity of that patient or that person that they love preserved, and what have they taken away from that experience?

With this project, we also at the same time trying to review the patient's notes or do a retrospective audit of the deaths of those patients and look at where the differences lie between the perception of the family or loved ones, and the clinical care that was applied. This was a UK based tool, so culturally very different. So we had to amend that. So that was specific for the setting. Also the way they went about the project is very different in the UK, so we've also had to work around that with our processes here. But we have been fortunate that we've been able to get this through high risk ethics.

So we're feeling pretty much assured that we will be able to progress with this. And it will be contextually very ... what's the word ... 'not appropriate', but contextually will be very relevant to the work that we're doing here.

It will actually be the first time in Australia that we will have perceptions of bereaved persons about the dying experience. Up to this time, the processes that are applied are really satisfaction surveys that don't adequately identify what the experience has been. And out of that we hope that we can develop quality improvement initiatives centred around where the deficits are, to better improve that, that experience. Often what's feedback is that families don't feel that they were heard. Otherwise, in other words, they weren't listened to. And often it's not about the specifics of care. Occasionally it is and that's what will also identify, so it's really just a process that we will be able to maybe identify better, where we need to increase education initiatives within the health services to improve that consumer experience. I think it's exciting that if we can actually publish and in some way validate this for an Australian setting, that it would definitely be something because it's such a user friendly tool. If we can actually show that our families were willing to undertake the survey, and loved ones were interested in this, then I think it's something that I think will have very broad application and uptake across different jurisdictions. Definitely.

Once validated the tool can be used by services to ensure they are continually improving the way they care for people approaching end of life.

For more projects like this, visit the Improvement Exchange.

For more information on care at end of life:

Read more news or to keep up to date with Clinical Excellence Queensland, subscribe to our mailing list or follow us on Twitter or Facebook.

Last updated: 24 May 2019