In the shoes of a GP… reflecting on End Of Life care

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.

Please post comments below. Do we all need to talk more about dying?

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About Gill Phillips - Whose Shoes?

Passionate about personalisation in health & social care. Creator of Whose Shoes? - an imaginative approach to helping people work together to improve lives. http://nutshellcomms.co.uk
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10 Responses to In the shoes of a GP… reflecting on End Of Life care

  1. Sarah Russell says:

    A wonderful poignant post highlighting many of the significant things about advance care planning. My thoughts also drift to how valuable it is to understand how people live with dying as well as plan. We live with dying for longer than our actual death, so it is an important time. Thank you

    Like

  2. I am a stage 3 kidney cancer patient with spinal metastises. I have lived with this for five years and I hope to squeeze a few more with luck and good medical care. I find it a great source of comfort and reassurance that I have discussed and implemented in writing my decisions about end of life care. We are almost phobic in our attitude towards death, yet it is the one inevitable life event. I took the lead in creating open discussion amongst family and friends. I cannot take the pain of my loss away from them but at least there will be no additional stress from wondering about my wishes. My husband holds full power of attorney, financial and medical. My home care team helped me put my wishes into written format. We need to shift our attitude to dying and death. Open and honest preparation helps me to live more fully for whatever time I have. Thank you for highlighting the issue.

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  3. Mel smith says:

    Yes we need to talk more about dying.

    My father is terminally ill.

    Last week his ‘just in case’ box was delivered, as a oractical thinker and doer, Dad lead me into the kitchen where his wares were laid out like a shrine. We were perplexed and amused by the broad sheet sized instructions and the attractively designed packaging of a drug that will ease my Dad’s final journey. I read between the lines, he was saying – I’m prepared.

    I have talked openly with my boys; a conversation that addressed: no regrets, living for the moment, snatching opportunities to talk from the heart or to display the actions that speak louder than words. I was preparing them.

    Dad now spends his days snatching his next breath. No moaning. Just a pre occupation with a condition that will cut his life short. It is Mum that needs the support now, she too needs advance care planning. We searched for a choir, a new group of friends, a chance to lose herself in melody if only for a moment. A spring in her step and melodic humming temporarily replace the anxiety.

    Thursday supper night brings us all together. On the menu is laughter, conversation and debate. A togetherness that is helping us all to be prepared.

    Our journey has been guided by the Community Matron. Where would we be without her? She has helped Mum and Dad explore where the next turn may take them. Their destination is pre planned.
    We have all come together and I’m glad that neither we nor the health care professionals have shied away from difficult conversations.

    The Bird

    His eyes patrol the skyline
    Darting left then right
    Watching
    Watching his family
    Always watching

    A bird of few words
    But when he speaks his words are well chosen
    They are wise
    Always wise

    A
    Hunter
    Gatherer
    Methodical in his approach
    A bird in business
    Logistics, no frills
    A provider
    Always a provider

    He deals not with emotion
    Employing a needs to be done attitude
    He is preparing his family for the journey of life
    Preparing
    Always preparing

    * yet to be finished and shared with my Dad before he reaches his final destination*

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  4. Absolutely agree with this post, death should be dignified and peaceful, not a manic moment of strangers and alien equipment.
    But in order to achieve this the conversations must be held and plans made. More input is needed to give the skills, confidence and support to staff to start these conversations, which could be funded by the decrease in emergency call outs when the time comes.
    I’d be really interested in any published evidence of this, I have my own experience but research is difficult to find

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  5. A great piece but let’s, please, talk about people not patients. The paradox, it seems to me, is about both extending these difficult and helpful debates yet, dismissively, using labelling theory without thinking about the holistic thinking within and around reciprocal and mutualistic relationships….

    Like

  6. Pingback: In the shoes of … | Jane Gilliard – Daughter, retired dementia care professional; and now supporter to and advocate and attorney for her father | Whose Shoes?

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