570414 research-article2015
PMJ0010.1177/0269216315570414Palliative MedicineSeymour et al.
Letter to the Editor Palliative Medicine 2015, Vol. 29(5) 481 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216315570414 pmj.sagepub.com
Seymour et al. Palliative sedation: Improvement of guidelines necessary, but not sufficient: A reply. Editor – We thank Schildman and colleagues for their comments regarding our study of continuous sedation (CS) in end-of-life care. We agree that more work needs to be done in the development of high-quality international guidance to aid sound clinical decision-making and also concur with their observations that guidelines alone are insufficient: too much emphasis on guidelines risks encouraging routinisation and obscuring the vital importance of case by case-based consideration of decisions about CS and the need for clinical staff to have the necessary time and repeated opportunities to refine this area of their practice. The role of nurses is often neglected, yet they have been shown to suffer emotional and moral distress in CS practice.1 It is interesting to note, in line with the observation of Schildman et al., that a Dutch study of the general public suggests that there are likely to be some individuals who express a preference to end their life at one point in time without any compromise to their level of consciousness.2 Research by Steinhauser et al.3 also suggests that not all patients associate deep ‘sleep’ with a good death. We agree with Schildman and colleagues that decisions regarding the initiation of CS need to be clearly distinguished from decisions regarding clinically assisted nutrition and hydration (CANH). Justifying the withholding or withdrawing of CANH on the basis of the argument that, since the patient is no longer conscious, CANH is ‘futile’, fails to make the necessary distinction between the two decisions and is a misuse of the concept of futility.4 Yours sincerely Declaration of conflicting interests We declare that we have no conflicts of interest.
Funding The study was funded by: The Economic and Social Research Council (UK) [grant no: RES-062-23-2078]; the Research Foundation Flanders (BE), the Flemish Cancer Association (BE); the Research Council of Ghent University (BE); the Netherlands Organization for Scientific Research (NL) and the Netherlands Organization for Health Research and Development (NL). None of these funders played any role in the study design, collection, analysis or interpretation of data.
References 1. Wilson E and Seymour JE. Understanding the role of nurses in the management of symptoms and distress in the last days of life. In: Sterckx S, Raus K and Mortier F (eds) Continuous sedation at the end of life – clinical, legal and ethical perspectives. Cambridge: Cambridge University Press, 2013: 100–115. 2. Van der Kallen HTH, Raijmakers NJH, Rietjens J, et al. Opinions of the Dutch public on palliative sedation: a mixedmethods approach. Br J Gen Pract 2013; 63: e676–e682. 3. Steinhauser KE, Clipp EC, McNeilly M, et al. In search of a good death: observations of patients, families, and providers. Ann Intern Med 2000; 132(10): 825–832. 4. Sterckx S, Raus K and Mortier F (eds). Continuous sedation at the end of life – clinical, legal and ethical perspectives. Cambridge: Cambridge University Press, 2013. Jane Seymour1, Judith Rietjens2,3, Sophie Bruinsma2, Luc Deliens3, Sigrid Sterckx4,5, Freddy Mortier5, Jayne Brown6, Nigel Mathers7 and Agnes van der Heide2 1School of Health Sciences, University of Nottingham, Queen’s Medical Centre, Nottingham, UK 2Department of Public Health, Erasmus MC, Rotterdam, The Netherlands 3End-of-Life Care Research Group, Vrije Universiteit Brussel and Ghent University, Brussels, Belgium 4Bioethics Institute Ghent, Ghent University, Ghent, Belgium 5Department of Philosophy and Moral Sciences, Vrije Universiteit Brussel, Brussels, Belgium 6School of Nursing and Midwifery, De Montfort University, Leicester, UK 7Academic Unit of Primary Medical Care, University of Sheffield, Northern General Hospital, Sheffield, UK
Corresponding author: Jane Seymour, School of Health Sciences, University of Nottingham, Queen’s Medical Centre, Derby Road, Nottingham NG7 2UH, UK. Email: [email protected]
Downloaded from pmj.sagepub.com at CMU Libraries - library.cmich.edu on September 11, 2015
PMJ0010.1177/0269216315570414Palliative MedicineSeymour et al.
Letter to the Editor Palliative Medicine 2015, Vol. 29(5) 481 © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216315570414 pmj.sagepub.com
Seymour et al. Palliative sedation: Improvement of guidelines necessary, but not sufficient: A reply. Editor – We thank Schildman and colleagues for their comments regarding our study of continuous sedation (CS) in end-of-life care. We agree that more work needs to be done in the development of high-quality international guidance to aid sound clinical decision-making and also concur with their observations that guidelines alone are insufficient: too much emphasis on guidelines risks encouraging routinisation and obscuring the vital importance of case by case-based consideration of decisions about CS and the need for clinical staff to have the necessary time and repeated opportunities to refine this area of their practice. The role of nurses is often neglected, yet they have been shown to suffer emotional and moral distress in CS practice.1 It is interesting to note, in line with the observation of Schildman et al., that a Dutch study of the general public suggests that there are likely to be some individuals who express a preference to end their life at one point in time without any compromise to their level of consciousness.2 Research by Steinhauser et al.3 also suggests that not all patients associate deep ‘sleep’ with a good death. We agree with Schildman and colleagues that decisions regarding the initiation of CS need to be clearly distinguished from decisions regarding clinically assisted nutrition and hydration (CANH). Justifying the withholding or withdrawing of CANH on the basis of the argument that, since the patient is no longer conscious, CANH is ‘futile’, fails to make the necessary distinction between the two decisions and is a misuse of the concept of futility.4 Yours sincerely Declaration of conflicting interests We declare that we have no conflicts of interest.
Funding The study was funded by: The Economic and Social Research Council (UK) [grant no: RES-062-23-2078]; the Research Foundation Flanders (BE), the Flemish Cancer Association (BE); the Research Council of Ghent University (BE); the Netherlands Organization for Scientific Research (NL) and the Netherlands Organization for Health Research and Development (NL). None of these funders played any role in the study design, collection, analysis or interpretation of data.
References 1. Wilson E and Seymour JE. Understanding the role of nurses in the management of symptoms and distress in the last days of life. In: Sterckx S, Raus K and Mortier F (eds) Continuous sedation at the end of life – clinical, legal and ethical perspectives. Cambridge: Cambridge University Press, 2013: 100–115. 2. Van der Kallen HTH, Raijmakers NJH, Rietjens J, et al. Opinions of the Dutch public on palliative sedation: a mixedmethods approach. Br J Gen Pract 2013; 63: e676–e682. 3. Steinhauser KE, Clipp EC, McNeilly M, et al. In search of a good death: observations of patients, families, and providers. Ann Intern Med 2000; 132(10): 825–832. 4. Sterckx S, Raus K and Mortier F (eds). Continuous sedation at the end of life – clinical, legal and ethical perspectives. Cambridge: Cambridge University Press, 2013. Jane Seymour1, Judith Rietjens2,3, Sophie Bruinsma2, Luc Deliens3, Sigrid Sterckx4,5, Freddy Mortier5, Jayne Brown6, Nigel Mathers7 and Agnes van der Heide2 1School of Health Sciences, University of Nottingham, Queen’s Medical Centre, Nottingham, UK 2Department of Public Health, Erasmus MC, Rotterdam, The Netherlands 3End-of-Life Care Research Group, Vrije Universiteit Brussel and Ghent University, Brussels, Belgium 4Bioethics Institute Ghent, Ghent University, Ghent, Belgium 5Department of Philosophy and Moral Sciences, Vrije Universiteit Brussel, Brussels, Belgium 6School of Nursing and Midwifery, De Montfort University, Leicester, UK 7Academic Unit of Primary Medical Care, University of Sheffield, Northern General Hospital, Sheffield, UK
Corresponding author: Jane Seymour, School of Health Sciences, University of Nottingham, Queen’s Medical Centre, Derby Road, Nottingham NG7 2UH, UK. Email: [email protected]
Downloaded from pmj.sagepub.com at CMU Libraries - library.cmich.edu on September 11, 2015
