Last week’s blog by Chris Roberts, who lives with younger onset dementia, has attracted a lot of interest. It just shows how important it is to hear from experts by experience – people courageous enough to share their stories. People helping us all really understand what helps and what hinders in terms of everyone having a good life, despite long-term or terminal conditions. Chris and I were both delighted that his guest post was featured in the ‘Pick of the blogs’ by Clare Horton in the Guardian.
Today’s blog similarly originated with me ‘spotting’ a tweet on Twitter and asking the person if she would like to share the story behind it as a guest blog – in this case anonymously to protect patient confidentiality. It is written by a GP who learned a lot from an encounter with one of her patients and wanted the story “to be helpful to a wider audience than health professionals.”
It is, I believe, the first ‘in my shoes’ blogpost specifically about end of life. Thank you very much for sharing it here. If we don’t ask about end of life wishes, we don’t know.
Dignity in death needs anticipatory planning
Recently, I was doing a round at a local Care Home and one of my patients collapsed. He had a history of serious heart problems and dementia and had been rapidly becoming more frail of late. There was little warning – I was holding his hand and we were chatting then he suddenly became more confused and lost consciousness. His pulse and breathing became erratic and I realised he was dying.
A few months earlier after a hospital admission which had been disorienting and distressing for him, I had met with my patient’s family to talk about on-going care and what we would do as his condition deteriorated further. We made a ‘best interest’ decision that he would not benefit from further admission under most circumstances and made plans to nurse him at home. We discussed the appropriateness of resuscitation in he event of cardiac arrest and informed the Out of Hours GP service of our intentions. We also arranged for a ‘Just in Case’ box to be prescribed – this box contains emergency medication which may be needed at times of sudden deterioration to alleviate distressing symptoms of pain and breathlessness.
My patient passed away peacefully half an hour later with his family around him. He did not need any intervention. There was no panic, no last minute call to the paramedics and no distressing attempt made at resuscitation. He died with dignity, at home.
Afterwards, I reflected. I thought about the many patients for whom end of life care is not so straight forward, particularly for those with dementia and non-malignant disease, where the disease trajectory is more uncertain and accurate prognostication often difficult. Advance care planning is not easy and must be handled very sensitively – as health care professionals it is all too easy to shy away from these difficult conversations and leave it for someone else to tackle. For patients with a diagnosis of dementia this is all the more emotive as these issues often are brought into sharp focus when the capacity to make decisions has been lost and best interest decisions must be made by the health professional and family involved in their care.
I know there have been times when I have prevaricated in these circumstances. It’s not easy – but this encounter with my patient reminded me of the need to make greater efforts to support patients who may be nearing the end of their life along with their carers.
In death, as in life, we all deserve dignity and we have a responsibility to ensure that all our patients achieve it.