Listen, pause, and breathe – guidance in delivering culturally acceptable palliative care
A blog post written by Charlotte Coulson, Clinical Nurse Consultant, Integrated Palliative Care Team, Bendigo Health
In 2011 I packed my family up and left the UK to take up a position as a Registered Nurse at Wyndham Hospital in Western Australia. I had nursed in the Kimberley before kids and a mortgage, so I knew some of the region and some of its people. Fast forward six years, and I’m in the final of the WA Nursing and Midwifery awards for my palliative care work with Aboriginal and Torres Strait Islander people with life-limiting diseases. What an experience, I was so fortunate to have had the opportunity to live in such a beautiful and diverse place, learn and experience so much.
The Kimberley is the magnificent North of Western Australia, 440,000 square kilometres of varied country. The people, their families, their culture, their lives have enriched mine, and for that, I am eternally grateful. Many I have had the privilege to meet live in poverty, there are high rates of suicide and traumatic death, high rates of chronic disease and infant mortality. These are just a few of the challenges faced by many families in the region.
How can a nurse from the UK positively impact on care provision when supporting and enabling those who live in the Kimberley at the end of their life? I am so different, what if I make a mistake, according to the online cultural training I had done I could not even talk about death? I was told the answer by Ms Kimika Lee, one of the very few Aboriginal and Torres Strait Islander Specialist Health Workers in Palliative care. She told me ‘just ask the question and listen to the answer, be genuine and honest in your approach, don’t use words to cover your anxiety’.
I have been privileged enough to meet people that have allowed me to be present at the end of their lives. From this, I have learnt a powerful lesson. A lesson I believe should be the same regardless of culture, background, religion, sexuality, race, belief and values. Experience has shown me that difference is not relevant unless specific to that person and their needs, what the patient might regard as quality of life and a good death is highly individualised.
The answer may be found through these three steps: Listen, Pause and Breathe. We should listen to what people want, what is essential, their challenges and their delights. Remember it's not about the clinician - it's about the person and their family, those people whose homes and lives we enter for such a short time.
Pause, especially when our clinical brain is ticking off a checklist of resolutions that the patient might require. Pause to break those thoughts and allow yourself to hear what is important to enable natural dialogue between you and the person you provide care for. In the words of the wise sage Ferris Bueller ‘if you don’t stop and look around once and while you might miss it’. You might miss the small but essential detail that enables you to develop a plan of care that is centred on the person and their family.
Breathe, to take a deep breath and shut your internal voice up. Now I appreciate all the stress on resources, the need to utilise time efficiently and maintain the organisational policies. But without sometimes questioning or worse still not developing, this cannot be expert clinical practice. But if by consciously breathing, you can shut that internal voice up for a moment. Allow the patient's voice to break through the imagined bureaucracy and red tape. The role of a palliative care nurse is to enable, not disable.
By listening, pausing and allowing yourself to breathe, you enable yourself to hear. Active listening can be challenging when caring for a person, regardless of background and identity. But by being genuine and trustworthy hearing a person's needs comes more naturally. Allow time, find out who you should speak to, some families have a hierarchy in decision making, some do not, learn about the local traditions and practices, be informed and use the local resources. Just don’t assume you know.
| "Active listening can be challenging when caring for a person, regardless of background and identity." |
We should also promote a person's independence in choosing, and be nonjudgemental in that choice. Just because Mrs Jones wants to spend her last days by the river fishing with her family, then why would we not enable this if this is what she deems as the quality of life? If Mr Smith wants to sit under a tree, in the community, with family for his last days, with no infusion or breakthroughs, then that is ok too, as long as he is making an informed choice about his own care. If Mrs Jones wishes to die in the small regional hospital surrounded by twenty members of her family, young and old for days of laughter and tears, then we should enable this too. This is about the choice of the person. Their view of their palliative care needs, their view of quality of life and death.
For some Aboriginal and Torres Strait Islander people the emotional and spiritual pain of not dying on country far outweighs the physical pain they may endure. But do not presume that is the case for all. Just because the online cultural training states that you should not look people in the eye this does not mean it is the same for everyone. Ask the question, take time to learn what is significant to the person you meet, get to know their family and be polite, it is our role to find out not their role to inform us.
| "Ask the question, take time to learn what is significant to the person you meet, get to know their family and be polite, it is our role to find out not their role to inform us." |
It's not just about the policy and procedure. When it seems impossible it should be considered a challenge, make the service fit the patient, not the other way around. I’m not naive in my beliefs and values. But when faced with clinical challenges, work harder to find a way. Earn your money, use your skills, take your time. Breath, pause and listen to those patients you meet irrespective of where they are from.
I thank the Elders, the First People of Australia, their families past, present and future for allowing me this insight and welcoming both me and my family with such open arms.
Charlotte Coulson, Clinical Nurse Consultant, Integrated Palliative Care Team, Bendigo Health