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Letter
Why identify ‘end-of-life’ in palliative care? In recent years, increasing emphasis has been placed on the identification of patients with supportive and palliative care needs. Prognostic models have been introduced in the UK, Holland and Catalonia to aid clinical decision-making in patients with advanced conditions at risk of dying.1–3 This journal has recently published a review of such tools and a survey of their usage throughout Europe.4 However, as the collective drive to identify patients intensifies, it is reasonable for health professionals to question the value of such an investment of time and effort. Due to the variable trajectory of chronic disease, many patients identified as being in the last year of life survive beyond this period, often by several years. Others do not require or wish for any palliative care input. Even when support is desired, it can sometimes be either unavailable or inaccessible in the community. And, is there a risk to the doctor–patient relationship by identifying these patients? This October, the wellintentioned campaign, launched by the National End of Life Programme in England, encouraging those in primary care to find the 1% of their practice population at the highest risk of dying, received such negative coverage in a tabloid newspaper that general practitioners (GPs) were effectively depicted as purveyors of a patient ‘death list’. In such media, the concept of patient frailty has now been distorted from a marker of care needs to a financial forecaster of future National Health Service savings. So, considering all of this, why should we remain so enthusiastic to identify?
6
Perhaps the most cogent answer lies less in what we can do and more in how we can relate to such patients and in what we can prevent. By identifying a person as being at risk of dying, we give ourselves the opportunity to reassess the long-term goals of their care and to build up a caring and compassionate relationship with the patient and family carer. When and if appropriate we may choose to engage in discussions about their end-of-life wishes. Where there has been no discussion about palliative care, patients are likely to die in hospital, while most patients on GP palliative care registers die at home.5 Without such a discussion, as usually is the case in people with multimorbidity, we miss a trigger to consider rationalising drugs that are no longer helpful or safe. A palliative care approach may prevent various futile treatments for patients with different diseases. At a recent conference at the University of Edinburgh, Dr Patrick McDaid, the Macmillan Palliative Care GP for Camden and Islington, London, recalled the words of the French writer Antoine de Saint-Expury: ‘if you want to build a ship, don’t drum up people together to collect wood and don’t assign them tasks and work, but rather teach them to long for the endless immensity of the sea’. Perhaps this is the message that palliative care must convey. We do not identify patients because we necessarily expect all of them to need our help and our services. Instead, identification helps to establish a culture where end-of-life care is not out of sight and out of mind, where difficult conversations are encouraged rather than evaded, where dying, on whatever timescale, is acceptable to
both doctor and patient. That is the sea for which we should all aspire. Let us continue to work together to keep building the ship. Stephen J Fenning Correspondence to Dr Stephen J Fenning, Royal Infirmary of Edinburgh, 51 Little France Crescent Old Dalkeith Road, Edinburgh EH164SA, UK; sj. [email protected]
Competing interests None. Provenance and peer review Not commissioned; internally peer reviewed.
To cite Fenning SJ. BMJ Supportive & Palliative Care 2014;4:6. Received 4 November 2013 Accepted 5 November 2013 Published Online First 6 December 2013
REFERENCES 1 Boyd K, Murray SA. Recognising and managing key transitions in end of life. BMJ 2010;341:649–52. 2 Thoonsen B, Engels Y, van Rijswijk E, et al. Early identification of palliative care patients in general practice: development of RADboud indicators for Palliative Care Needs (RADPAC). Br J Gen Pract 2012;62:e625–31. 3 Gómez-Batiste X, Martínez-Munoz M, Blay C, et al. Identifying patients with chronic conditions in need of palliative care in the general population: development of the NECPAL tool and preliminary prevalence rates in Catalonia. BMJ Support Palliat Care 2013;3:300–8. 4 Maas EAT, Murray SA, Engels Y, et al. What tools are available to identify patients with palliative care needs: a systematic literature review and survey of European practice. BMJ Support and Palliat Care 2013;3:444–51. 5 Zheng L, Finucane AM, Oxenham D, et al. How good is primary care at identifying patients who need palliative care? A mixed methods study. Eur J Palliat Care 2013;20:216–22.
BMJ Supportive & Palliative Care 2014;4:6. doi:10.1136/bmjspcare-2013-000622
Downloaded from http://spcare.bmj.com/ on March 18, 2015 - Published by group.bmj.com
Why identify 'end-of-life' in palliative care? Stephen J Fenning BMJ Support Palliat Care 2014 4: 6 originally published online December 6, 2013
doi: 10.1136/bmjspcare-2013-000622 Updated information and services can be found at: http://spcare.bmj.com/content/4/1/6
These include:
References Email alerting service
This article cites 5 articles, 2 of which you can access for free at: http://spcare.bmj.com/content/4/1/6#BIBL Receive free email alerts when new articles cite this article. Sign up in the box at the top right corner of the online article.
Notes
To request permissions go to: http://group.bmj.com/group/rights-licensing/permissions To order reprints go to: http://journals.bmj.com/cgi/reprintform To subscribe to BMJ go to: http://group.bmj.com/subscribe/
Letter
Why identify ‘end-of-life’ in palliative care? In recent years, increasing emphasis has been placed on the identification of patients with supportive and palliative care needs. Prognostic models have been introduced in the UK, Holland and Catalonia to aid clinical decision-making in patients with advanced conditions at risk of dying.1–3 This journal has recently published a review of such tools and a survey of their usage throughout Europe.4 However, as the collective drive to identify patients intensifies, it is reasonable for health professionals to question the value of such an investment of time and effort. Due to the variable trajectory of chronic disease, many patients identified as being in the last year of life survive beyond this period, often by several years. Others do not require or wish for any palliative care input. Even when support is desired, it can sometimes be either unavailable or inaccessible in the community. And, is there a risk to the doctor–patient relationship by identifying these patients? This October, the wellintentioned campaign, launched by the National End of Life Programme in England, encouraging those in primary care to find the 1% of their practice population at the highest risk of dying, received such negative coverage in a tabloid newspaper that general practitioners (GPs) were effectively depicted as purveyors of a patient ‘death list’. In such media, the concept of patient frailty has now been distorted from a marker of care needs to a financial forecaster of future National Health Service savings. So, considering all of this, why should we remain so enthusiastic to identify?
6
Perhaps the most cogent answer lies less in what we can do and more in how we can relate to such patients and in what we can prevent. By identifying a person as being at risk of dying, we give ourselves the opportunity to reassess the long-term goals of their care and to build up a caring and compassionate relationship with the patient and family carer. When and if appropriate we may choose to engage in discussions about their end-of-life wishes. Where there has been no discussion about palliative care, patients are likely to die in hospital, while most patients on GP palliative care registers die at home.5 Without such a discussion, as usually is the case in people with multimorbidity, we miss a trigger to consider rationalising drugs that are no longer helpful or safe. A palliative care approach may prevent various futile treatments for patients with different diseases. At a recent conference at the University of Edinburgh, Dr Patrick McDaid, the Macmillan Palliative Care GP for Camden and Islington, London, recalled the words of the French writer Antoine de Saint-Expury: ‘if you want to build a ship, don’t drum up people together to collect wood and don’t assign them tasks and work, but rather teach them to long for the endless immensity of the sea’. Perhaps this is the message that palliative care must convey. We do not identify patients because we necessarily expect all of them to need our help and our services. Instead, identification helps to establish a culture where end-of-life care is not out of sight and out of mind, where difficult conversations are encouraged rather than evaded, where dying, on whatever timescale, is acceptable to
both doctor and patient. That is the sea for which we should all aspire. Let us continue to work together to keep building the ship. Stephen J Fenning Correspondence to Dr Stephen J Fenning, Royal Infirmary of Edinburgh, 51 Little France Crescent Old Dalkeith Road, Edinburgh EH164SA, UK; sj. [email protected]
Competing interests None. Provenance and peer review Not commissioned; internally peer reviewed.
To cite Fenning SJ. BMJ Supportive & Palliative Care 2014;4:6. Received 4 November 2013 Accepted 5 November 2013 Published Online First 6 December 2013
REFERENCES 1 Boyd K, Murray SA. Recognising and managing key transitions in end of life. BMJ 2010;341:649–52. 2 Thoonsen B, Engels Y, van Rijswijk E, et al. Early identification of palliative care patients in general practice: development of RADboud indicators for Palliative Care Needs (RADPAC). Br J Gen Pract 2012;62:e625–31. 3 Gómez-Batiste X, Martínez-Munoz M, Blay C, et al. Identifying patients with chronic conditions in need of palliative care in the general population: development of the NECPAL tool and preliminary prevalence rates in Catalonia. BMJ Support Palliat Care 2013;3:300–8. 4 Maas EAT, Murray SA, Engels Y, et al. What tools are available to identify patients with palliative care needs: a systematic literature review and survey of European practice. BMJ Support and Palliat Care 2013;3:444–51. 5 Zheng L, Finucane AM, Oxenham D, et al. How good is primary care at identifying patients who need palliative care? A mixed methods study. Eur J Palliat Care 2013;20:216–22.
BMJ Supportive & Palliative Care 2014;4:6. doi:10.1136/bmjspcare-2013-000622
Downloaded from http://spcare.bmj.com/ on March 18, 2015 - Published by group.bmj.com
Why identify 'end-of-life' in palliative care? Stephen J Fenning BMJ Support Palliat Care 2014 4: 6 originally published online December 6, 2013
doi: 10.1136/bmjspcare-2013-000622 Updated information and services can be found at: http://spcare.bmj.com/content/4/1/6
These include:
References Email alerting service
This article cites 5 articles, 2 of which you can access for free at: http://spcare.bmj.com/content/4/1/6#BIBL Receive free email alerts when new articles cite this article. Sign up in the box at the top right corner of the online article.
Notes
To request permissions go to: http://group.bmj.com/group/rights-licensing/permissions To order reprints go to: http://journals.bmj.com/cgi/reprintform To subscribe to BMJ go to: http://group.bmj.com/subscribe/
