‘Don’t use the word dying please.’

‘Don’t use the word ‘Dying’ please’

Preparing to see a patient who has advanced disease and maybe even numerous metastases. You read the oncology reports; you familiarize yourself with every last blood test they have had to make sure you’re not missing anything, you speak to their oncology team ensure you know this patients past medical history down to the last scan he has had.  Its advanced , it’s clear to see on paper this patient is gravely unwell and now it Is your job as the palliative nurse to introduce yourself and explain our role. 

This is part of the role as a palliative nurse and in some cases this role is welcomed, often a sign of relief is had once you are in that patients home. Patients and their family members feel supported and you become their anchor. 

This isn’t always the case, what happens when the patient and family want you, they crave for your support and  care, but it’s on their terms, do not use the word ‘dying’ we are not going to talk about DNAR and we are most definitely not going to talk about what is happening in the future because it simply cannot be happening to them. What then? How do you do your job when this is the reality for most of our patient who are young and need palliative care but will not accept they are dying or need to talk about the future.

I have a patient who wants to die fighting, and we often hear this. The word fighting to me often confuses me when it is used in palliative care. As if someone ‘gives up’ the fight does that mean you have lost? Why are people pressured to keep ‘fighting’ all the time? I feel like the connotation can confuse people and an assumption of weakness and feebleness is given to the patients who don’t want to fight their disease.  

I think these people are extremely brave and courageous as the real ‘fight’ I often see with palliative patients is the one where you confess to yourself and your family that you might be dying. ‘Dying’ it becomes a word that people that ‘fight’ their disease don’t use, because they are too strong for that to be happening to them and the thought of even saying it will make it become true. 

In palliative care we often stress the importance of preferred place of care and death, for some patients they find this extremely hard to answer as their advanced care plan follows a different path.

As a palliative care nurse, I often feel like I am being selfish by wanting things to be put in place for my peace of mind because I can see the inevitable gravely tragic future. However, I was enlightened by a conversation with a patient who would cry to me how important it was for him to have treatment until the very day he died. This sat uncomfortably with me, because I could see he was in pain, gasping for breaths, gravely unwell and so overwhelmingly cyanosed he was mottled from head to toe. 

It was at conversations like this, I felt very overwhelmed as a palliative care nurse as to what to do, I need to honour this man’s wishes, he is not accepting what I am saying even though I feel like it is reaching bubbling point and we are running out of time rapidly as this man is dying very quickly.  

It was the morning before he did die, it was a fraught home visit and he never actually said the words ‘dying’ but he did say ‘I need the hospice’ and he was transferred to the hospice that day.

It is situations like these, which enlightened me as a palliative care nurse; there is no lenient pattern to how palliative nursing and advanced care planning will go. Sometimes we do things  that seem to go against the grain of palliative care and what we advise as good practice will not work for all  patients that live to ‘fight’ their disease and look for hope in every possible outcome and that’s ok because that is what the patient wants and they direct how their death is orchestrated. We, as palliative nurses can sometimes only try and lessen the fallout by being there and allowing the crisis to unfold and dealing with it when it does.