Identifying those requiring access to palliative and end of life care

Published on: Author: David Clark 2 Comments
Professor David Clark, University of Glasgow

In this short video presentation I discuss what we know about ways to identify people who are in the last year of their life or who might have palliative care needs.

I start by setting out the global context, showing how many people in the world currently die every year, and explaining why this is likely to increase in the coming decades.

Referring to the WHO Global Atlas of Palliative Care at the End of Life, and a recent paper from Professor Irene Higginson‘s group, I describe the current level of need for palliative care around the world, and how can we identify it at a national level.

  • How many people need palliative care? A study developing and comparing methods for population-based estimates, Fliss EM Murtagh, Claudia Bausewein, Julia Verne, E Iris Groeneveld, Yvonne E Kaloki,  and Irene J Higginson. Palliative Medicine
    2014, Vol 28(1) 49–58

I explore what this means for Scotland, where deaths may rise from 50,000 a year today to 60,000 each year by late century. On estimate, that would mean that in Scotland 40,000 people who die each year would currently benefit from palliative care of some kind.

I discuss the findings of  recent Scottish studies conducted in  general practice and in hospital. Can we be confident that all these patients have been identified and that their end of life care needs are being addressed?

  • How good is primary care at identifying patients who need palliative care? A mixed-methods study. Zheng L, Finucane AM, Oxenham D, McLoughlin P, McCutcheon H, Murray SA.  European Journal of Palliative Care 2013; 20: 216–222.

In our own study of the Imminence of Death among Hospital Inpatients, we showed that almost 1 in 10 patients in hospital on any given day in Scotland will die on that admission.

I examine which screening tools might be most useful in the identification process, drawing on a systematic review by Professor Scott Murray‘s team:

  • What tools are available to identify patients with palliative care needs in primary care: a systematic literature review and survey of European practice. Maas EA, Murray SA, Engels Y, Campbell C.  BMJ Supportive and Palliative Care, 2013;3:444-451.

The Scottish Government invited me to give a presentation entitled ‘Identifying those requiring access to palliative care in Scotland’ at the NHSScotland Event 2015 in Glasgow on 23-24 June 2015, as part of two sessions about palliative care entitled Finding Out What Matters When Time Becomes Short.

We produced a video of my presentation, designed to be shown at the event in my absence – the video above is the same presentation, but in a slightly longer form which also describes the global context. Andrew Foster of Heart of England NHS Foundation Trust and the Marsh family generously gave their permission to use Andrew’s photo of Sheila Marsh.

I hope you will find this presentation useful.

Kind regards,

Professor David Clark

gla.ac.uk/endoflifestudies

@EndofLifeStudy

 

2 Responses to Identifying those requiring access to palliative and end of life care Comments (RSS) Comments (RSS)

  1. You must include the neglected group who spend decades of their life on palliative care, in just as much pain, including pain that cannot be controlled by the most highly trained palliative care doctors: we are the patients with Chronic Central (ie. Central Nervous System) Pain States. We are a significant % of the population, something up to 20% of people have chronic pain of some kind at any time. It does not get better unless treated aggressively with opiates within 24 months of onset. A percentage of us become very severe cases because of the medical abuse (mainly suspicion we are addicts by doctors and all GPs who are untrained and think pain must be connected to tissue damage). For us once it might have been but our neurological matrices have rewired to send unnecessary pain signals to and from our bodies. Pain spreads to new areas the more stress and under-treatment we suffer. I have been relentlessly bullied & abused by ignorant GPs (pain management is only taught in I believe two UK Medical Schools, Glasgow and Imperial College). So despite having an excellent anaesthetist my pain will now after thirteen years never be controlled by medication. This is an emotional as much as a physical sensitivity in the CNS which exaggerates pain signals. Therefore it is pure hell to live with. We are broken physically and we are green emotionally. This is not good enough in the World’s 5th richest economy. Frankly medical care in Iceland is better. No questions asked about my meds, they were just given even though I was nil by mouth as I had been admitted for what turned out to be gallstones. That would not happen in the UK. We have to be included as being on palliative care for life, as my anaesthetist puts it, or we will never be treated with the dignity and respect that the law says people with disabilities should receive. I would be interested in corresponding about this with you. I am not a medical doctor, I am an NHS trained psychodynamic therapist and former award winning journalist, I can’t work any more because of pain, pain I never could have imagined would be so severe and so life wrecking. I am an expert patient. Primary care has to change. I have had criminal offences committed against me multiple times by ignorant GPs and I have been assaulted for no reason, including indecently, by A&E nurses. They have removed part use of my left arm for life as the shoulder injury they gave me became a chronically panful arm. I have a DNR and must never have surgery. I am 57. My talent and success at work wasted, unhappy living out of my home town of London. I don’t fit in here in D&G or a I am too smart. That is not an advantage here. Those that stay in their cities with CP usually have nervous breakdowns because the stimulation of cities becomes too much. Something must be done for people like me and I am asking you to include us in your studies. How am I going to,love another 40 years like this, on as many pain meds and the same ones as end of life cancer patients? Where will I find the £20k pa I need to pay people to do the essential life tasks I cannot do for myself? It has cost me >£800.000 so far. I have lost my jobs, my home and my pension and all that was meaningful to me. I have no family left.The state does not provide because it has failed. Failed ten years ago,and not coming back says my doctor and I agree, the safety net is a lie. Social,services,lie,so,as,not,to,’provide. Commas intended. 3 weeks or months in an hospice would be paradise compared to this and I am sure many CP patients would,agree, see the online fora. Painscience.com has all the scientific info and academic papers you will need to find out more. I look forward to,hearing from you.

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