1. GENESIS ONCOLOGY TRUST LECTURE SERIES 2012 LECTURE #4 3 RD MAY NEIL PICKERING AND SIMON WALKER, BIOETHICS CENTRE, UNIVERSITY OF OTAGO Should we use sedation to relieve existential suffering at the end of life?

2. Abstract It is widely agreed that palliative care for suffering at the end of life is ethically distinct from euthanasia provided amongst other things the response is proportional to the suffering. Proponents of palliative sedation therapy (PST) for existential suffering at the end of life argue that it is a proportional response while opponents argue that it is not a proportional response. I will argue that since no one has proposed a metric for measuring the response or the suffering, the dispute is currently rhetorical rather than substantive. I offer a possible metric, but find that it is more likely to reveal differences than resolve them.

3. Introduction Problems of definition  What is existential suffering (ES)? An analysis of the arguments about Palliative Sedation Therapy (PST) for ES  A shared form of argument  A disagreement about its normative force  The argument from proportionality A well formed argument from proportionality Is the argument from proportionality well formed in our case Improving the argument What can bioethics do?  Bioethics is not here to resolve your ethical problems

4. Existential suffering – the problem of definition ‘Multiple definitions of existential suffering are evident. In the course of this review, we have identified 56 definitions of the term including those that were simultaneously linked to spirituality’ (Boston et al. 2011, p.606) ‘The most prevalent finding in this review has been lack of consistency in the way existential suffering is defined and understood. Different groups define existential concerns differently, and there are evident ambiguities between what may be understood to be a spiritual concern and what may be understood as a symptom of existential suffering or distress.’ (Boston et al. 2011, p.615)

5. Existential suffering – the problem of definition Why is this a difficulty?  Clinical guidelines require clearly understood terms Can we resolve this difficulty?  Ordinary language usage? Hardly a part of ordinary language  Leave it to the experts? Who are they to be? Where will they turn?  Possibility (for another day): a substantive philosophical exploration of existence E.g. develop the idea of ‘meaning’

6. An analysis of the argument Shared form of the argument  Both proponents and opponents of the use of palliative sedation therapy (PST) for existential suffering (ES) agree that if PST (for ES) is distinguishable from euthanasia (by double effect) it may be permissible to use it  Both agree that the vital questions thrown up by double effect are:  Is it intended to provide symptom relief?  Is the means of relief proportional to the symptoms to be relieved  Is an unacceptable state the measure of success of the intervention?

7. An analysis of the argument Disagreement about the argument’s normative force  For example, about proportionality  YES: While sedation for refractory physical symptoms may be more readily accepted by clinicians, patients, and families, existential suffering can be just as refractory and agonizing as physical symptoms. (Rousseau, p.151)  Implying that PST is a proportional response  NO: However, it appears that some practitioners are willing to apply palliative sedation to less severe physiologic symptoms as well as psychiatric/existential symptoms. (Davis & Ford, p.700)  Implying that PST is not a proportional response

8. An analysis of the argument A well formed discussion about proportionality  what is the right proportion of length to width of a rugby field?  We can describe the proportions of the field: by measuring it and putting it in the appropriate form e.g. 2:1, or whatever  We can give reasons for thinking that this proportionality is right: e.g. we can say that this width and length of field produce the best possible game of rugby

9. An analysis of the argument Has a description of the proportions involved been given?  No What reasons have been given for thinking that we have proportionality?  None: proportionality has merely been asserted on both sides

10. Improving the argument Add a metric to describe the proportions Thus providing a basis for judgment about proportionality

11. Improving the argument Add a metric to describe the proportions  Proposal: use a quality of life score  Calculate the score of being in the states of deep (permanent?) sedation of having intractable existential suffering  Represent the proportions

12. Improving the argument Add a metric to describe the proportions Is this likely to work?  Problem: getting agreement about the quality of life (QoL) scores In addition to the difficulty of agreeing on the QoL of existential suffering, there is difficulty agreeing on the QoL of being sedated [Possibly: these measures can’t be determined by empirical data (including a person’s immediate assessment of their state of mind or experience)]  The resulting measurements are likely to reflect the evaluation of the person’s state about which there is dispute

13. Conclusion Whether PST is a proportional response to ES is an agreed question A well formed argument about proportions involves  A metric which can be used to describe the proportions  A reasoned evaluation of the proportions The current disagreement provides no such metric An attempt to provide a metric uses quality of life scales But the disagreement prevents agreed measurements being established  Any proportions which arise reflect the evaluation about which there is dispute

14. References Boston, P, Bruce, A. and Schreiber, R ‘Existential suffering in the palliative care setting: an integrated literature review’ Journal of Pain and Symptom Management 41:2, 2011, pp.604-618 Davis, M.P and Ford, P.A. ‘Palliative sedation definition, practice, outcomes and ethics’ [Letter to the Editor] Journal of Palliative Medicine 8:4, 2005, pp.699-701 Rousseau, P. ‘Existential suffering and palliative sedation: a brief commentary with a proposal for clinical guidelines’ American Journal of Hospice and Palliative Care, 18:3, May/June 2001, pp.151-153 Other references  De Graeff, A. & Dean, M. ‘Palliative sedation therapy in the last weeks of life: a literature review and recommendations for standards’ Journal of Palliative Medicine 10:1, 2007, pp.67-85  Hallenbeck, J.L. ‘Terminal sedation: ethical implications in different situations’ Journal of Palliative Medicine 3:3, 2000, pp.313-320  Morita, T., Tsunoda, J., Inoue, S. & Chihara, S. ‘Terminal sedation for existential distress’ American Journal of Hospice and Palliative Medicine 17, 2000, pp.189-195  Muller-Busch, H.C., Andres, I. & Jehser, T. ‘Sedation in palliative care – a critical analysis of 7 years experience’ BMC Palliative Care 2:2, 2003  Roy, D.J. ‘Does ‘spiritual’ indicate a limit to palliative care?’ [editorial] Journal of Palliative Care 27:4, Winter 2011, pp.259-260  Taylor, B.R. & McCann, R.M. ‘Controlled sedation for physical and existential suffering?’ [Case discussion in palliative medicine] Journal of Palliative Medicine 8:1, 2005, pp.144-147