Accompanying them home the ethics of hospice palliative care

Accompanying Them Home: The Ethics of Hospice Palliative Care Monika Anne Wilson BSocSc BAHons MCouns Humanities Research Program Queensland University of Technology Brisbane, Queensland Australia Submitted in full requirement for the award of Doctorate of Philosophy 2009 ii To Margo, whose courage and tolerance inspired me, To Reg, whose kindness and bright blue eyes I remember To Lyn, whose self changes in the face of death give new meaning to the concept of self transformation, To Chris, whose concern for others will serve as a constant reminder To my father, Clive, for his gifts and his quietness, To Lainie, who reconfirmed the power of story for me Watching, being with, and witnessing your deaths have humbled me, Your stories show that leaving can be painful and miraculous too iii iv Abstract This inquiry, which employed a narrative research approach, critically explored the ethical dimension of hospice palliative care Hospice palliative care is the profession specifically developed to care for the dying The development of this practice has grown significantly since the 1980s in Australia, yet ethical inquiry into this professional practice has largely focused on particular issues, problems or dilemmas, such as euthanasia Although particular ethical issues are important considerations, a broader investigation of the ethics of hospice palliative care practice has not been given sufficient consideration in the growing accumulation of the research literature in Australia Jennings (1997) surmises that “systematic reflection on ethics in the hospice field is curiously underdeveloped” (p 2) This study goes someway towards filling this gap In building upon the Pallium research by European scholars and integrating a social practice framework (Isaacs, 1998) this inquiry provides an alternative account of the ethical agenda and one which has privileged an internal exploration, rather than assume that the ethics would be the same as any other health care modality or to simply adopt a dominant, principles-based approach These internal explorations were located in the storied accounts of thirty interdisciplinary hospice palliative care professionals This thesis provides a thorough, textual conversation into the realm of ethical caregiving at the end of life Several key insights were illuminated Firstly, total care must be central to the philosophy underpinning hospice palliative care practice, but this concept and practice of total care was being eroded and contested Secondly, a predominantly modernist account of personhood was located in the narrative accounts This modernist account of personhood was thought to be insufficient for the practice of total care and needed to be reconceptualised An embedded ontological account was provided which would assist with the understanding and practice of total care Thirdly, initially it was thought that there was no common, shared understanding of the purpose of the practice It was suggested that the profession was “wandering in the wilderness” when it came to the aim of its practice However, the professionals did share a common telos (aim towards a good) and it was overwhelmingly relational This led to the proposal of a new v telos for hospice palliative care practice centered on the creation and maintenance of unique relationships which would assist people in their final stage of life Lastly, the ethical frameworks which guided practice for the professionals were presented In these frameworks it was significant values (acceptance of human mortality, total care and honest and open communication) and relationships (how we treat each other) which played the main role in what constituted hospice palliative care ethics An account of a hospice palliative care ethical relationship was provided which included a proximity stance of in-between Overall, any ethic for hospice palliative care must have at the heart the relationship between professional caregiver and living-dying person The relationships in this social practice, between each other, accompanying one another, are our ethical compass This thesis concluded that hospice palliative care, as a social practice, has a rich ethical dimension as understood and articulated by its professional members These insights have resulted in the construction of a new ethical framework reflecting, formalising and adapting the ethical dimension as understood by its professional members This ethical framework - A Relational Ethic of Accompanying - is needed to help maintain, sustain and protect the unique identity of this profession This framework adds to the “moral vocabulary” (Jennings, 1997) and “moral specificity” (ten Have & Clark, 2002) of hospice palliative care practice In addition, it would provide important guidance to palliateurs reflecting on how best to provide quality, compassionate and ethical care at the end of life Keywords: Ethics, moral, narrative, story, social practice, hospice palliative care, dying, death, personhood, ontology, living-dying person and end of life care vi Table of Contents Abstract v - vi Table of contents vii – xii Abbreviations / List of tables / Figures xiii Authors declaration xiv The living-dying person xv Reading this thesis (story) xvi - xvii Monika as author, researcher, professional, human being xviii - xxiv Poem: Accompanying them home xxv Acknowledgments (gratitude) xxvi - xxvii Part One: The Floorboards Chapter - Introduction: Setting the scene Introduction 1.2 What is hospice palliative care? 1.2.1 The definitions of hospice palliative care 1.2.2 The values of hospice palliative care 1.2.3 The demarcation of hospice palliative care 1.2.4 Current critiques in hospice palliative care 1.2.4.1 The medicalisation thesis: Selling our soul 1.2.4.2 The professionalisation thesis: Too precious 1.2.4.3 The mainstreaming thesis: Wholly absorbed 1.2.4.4 The secularisation thesis: Danger of losing its heart and soul 1.3 Buffeted by external forces 1.4 The standpoint of ethics 1.5 Clarification of terms 1.5.1 Ethics (ethical) and morals (morality) 1.5.2 Living-dying person 1.5.3 Patient identity 1.5.4 Stories 1.6 The purpose of the inquiry 1.6.1 Taylorian articulation 1.7 The rationale of the inquiry 1.7.1 Significant developments 1.7.2 Eroding values? 1.7.3 The place of biomedical ethics 1.7.4 Missing broader ethical investigations 10 12 12 14 15 17 17 18 21 21 22 22 22 23 24 26 26 27 27 28 vii 1.8 Research questions 1.9 Current literature 1.10 Limitations of the inquiry 1.11 Chapter summary 1.12 Contents of this thesis 30 31 39 40 40 Chapter – Methodology: Foundations of thought and processes of research Introduction 2.1 A dominant approach to ethics: Principles-based ethics (PBE) 2.1.1 PBE in hospice palliative care 2.1.2 Helpful or problematic? 2.2 An alternative account of ethics: Engaged ethics 2.2.1 Seeking understandings 2.2.2 Appreciating personhood 2.2.3 The role of judgment 2.2.4 Strategies of change 2.3 A social practice framework (SPF) 2.3.1 The features of a social practice 2.3.2 Practices as constituted by persons 2.3.3 Practices are embedded in time 2.3.4 Practices with purpose 2.4 Narrative inquiry: A world of stories 2.4.1 An account of narrative 2.4.2 Narrative understanding 2.4.3 Temporal understanding in stories 2.4.4 Identity shaping 2.4.5 Stories in sickness, dying and suffering 2.5 The centrality of constructionism 2.6 Narrative as ethics 2.6.1 Narrative ethics for social practices 2.7 Narrative in research 2.8 Ethics clearance and informed consent 2.9 Inviting hospice palliative care professionals 2.10 Narrative interviewing 2.11 Transcription 2.12 Narrative reflection: The art of interpretation 2.12.1 Writing as research 2.12.2 Interpretation 2.13 Narrative quality 2.13.1 Trustworthiness 2.13.2 Integrity 2.13.3 Possibilities 2.14 Chapter summary 43 44 46 47 50 52 53 54 54 56 58 58 59 59 62 64 66 67 68 69 70 71 74 75 76 76 79 81 82 83 84 85 85 86 86 87 viii Part Two: The Walls Chapter - Tradition: Something’s slipped out Introduction 3.1 The changing face of dying 3.1.1 Dying as a social event 3.1.2 Advancements in medicine 3.1.3 Problems with modernised dying 3.1.4 Shameful dying 3.2 Something new was needed 3.2.1 Dame Cicely Saunders: The founder of the modern hospice movement 3.2.2 Divinely inspired 3.3 Contemporary hospice palliative care practice 3.4 Which one: Hospice or palliative? 3.4.1 Differing values 3.5 The philosophy of (total) care 3.5.1 Total pain: More than physical 3.5.2 Total pain equals total care 3.5.3 Importance of the social realm 3.5.4 The centrality of the spiritual 3.5.5 Dying and death as a natural part of life 3.6 Narratives of the philosophy of (total) care 3.7 Contestation and erosion of total care 3.7.1 Total care requires teamwork 3.8 To live until you die: Popular expressions 3.9 Confused about the philosophy 3.10 The philosophy is lost: Something’s slipped out 3.11 Chapter summary 91 93 94 95 96 99 100 101 103 106 107 108 108 108 110 111 113 114 115 117 120 123 124 125 126 Chapter – Ontology: Facets of being Introduction 4.1 Why ontology? 4.2 Personhood as historically and culturally shaped 4.3 Modernist account of personhood: Individual, thinking beings 4.3.1 Person-as-individual 4.3.2 Person-as-mind 4.4 An alternative account of personhood: The metaphysics of embeddedness 4.4.1 Language animals 4.4.2 Interpretive beings 4.4.3 Embodiment: Body-relatedness 4.4.4 Personhood as purposefulness 4.4.5 Beings-in-the-world 129 130 132 133 133 139 143 145 147 150 154 157 ix 4.4.6 Inextricably linked with others: Social beings 4.4.7 Moral self 4.4.8 Embedded in time 4.4.9 Unique narrative-selves 4.5 Summary: Embedded personhood 4.6 Implications of disrupted personhood 4.6.1 Ontological suffering: Woundings 4.6.2 Ontological opportunities: Transformation and healing 4.7 Chapter summary 159 163 165 167 169 169 173 174 175 Chapter - Purpose: Wandering in the wilderness Introduction 5.1 Why telos? 5.2 Crucial telos literature 5.3 Aiming for comfort 5.3.1 Community attitudes 5.4 The achievement of a good death 5.4.1 The good death helpful? 5.4.2 The ‘good enough’ death 5.5 Peacefully dying 5.6 The relief of suffering 5.6.1 An account of suffering 5.6.2 Suffering as a medical problem 5.6.3 Suffering as inevitable 5.6.4 Suffering as valuable 5.6.5 Choice in suffering 5.7 Achieving quality of life 5.7.1 What is quality of life? 5.7.2 Measuring quality of life 5.7.3 Unrealistic as a goal 5.7.4 Choice in quality of life 5.8 Aiming for pain management and symptom control: The external influence of biomedicine 5.9 Dying my own way: The external influence of individualism and choice 5.9.1 The limitations of individualism 5.9.2 Individual responsibility 5.10 Summary of overarching goals 5.11 Telos as fractured and fragmented: Wandering in the wilderness 5.12 The centrality of relationship as purpose 5.12.1 Relationship literature 5.12.2 A unique relationship 5.13 Towards a new telos 5.14 Chapter summary 177 177 178 181 182 183 184 185 186 188 188 189 190 191 192 193 194 195 196 197 199 200 202 204 206 207 208 211 214 217 219 x OED (2007) Oxford English Dictionary [Online] http://dictionary.oed.com.ezp02.library.qut.edu.au/entrance.dtl Palliative Care Australia (1999) Standards for palliative care provision (3rd ed.) 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Baltimore, USA: Urban & Schwarzenberg Zucker, M B & Zucker, H D (1997) Medical futility and the evaluation of life-sustaining interventions Cambridge, UK: Cambridge University Press 353 354 Appendix One Caring for the Dying Other: Mapping the Ethical Dimension of Hospice Palliative Care Practice Monika Wilson Queensland University of Technology School of Humanities and Human Services Centre for Social Change Research (07) 3864 4780 ma.wilson@qut.edu.au Statement of Consent By signing below, you are indicating that you: • • • • • • • • Have read and understood the information sheet about this project; Have had any questions answered to your satisfaction; Understand that if you have any additional questions or queries you can contact the researcher (Monika Wilson) or her supervisor (David Massey) on the telephone/email contact details provided; Understand that you are free to withdraw at anytime, without comment or penalty; Understand that you can contact the QUT Research Ethics Officer on 3864 2340 if you have any concerns about the ethical conduct of the project; Understand that participation in this project is completely voluntary; Understand that any information provided by you will remain confidential – neither your real name, nor any explicit information identifying you, will be used All information will be stored in a secure, locked place; and Agree to participate in this research project, with the understanding that your responses will be included in the final PhD thesis, journal articles and conference papers Name: ……………………………………………………… Signature: ……………………………………………………… Date: ……………………………………………………… Contact Details: ……………………………………………………… 355 Appendix Two An Invitation to Participate in an Applied Ethics Research Inquiry into the Ethics of Hospice Palliative Care THE RESEARCH INQUIRY Caring for the dying other: Mapping the ethical dimension of hospice palliative care practice Professional care of the dying, or palliative care, has developed significantly in the last twenty five years in Australia Development of this important form of care is crucial, yet critiques of this growth have been proposed including the ad hoc manner with which it has progressedi, the potential medicalisation of this practiceii and the loss of the original values of the hospice movementiii Ethical inquiry into this professional practice has largely focused on particular issues, problems and dilemmas, such as euthanasia Although specific ethical issues are important considerations, a broader investigation of the ethics of palliative care practice has not been given sufficient consideration in the growing accumulation of palliative care research literature in Australia This research inquiry resolves to bridge this gap More recently European scholarsiv have identified a distinctive set of moral values that palliative care professionals state as important to the practice These moral values provide for a unique ethical dimension in the practice of palliative care It is this ethical dimension that this research inquiry intends to articulate, interpret and appraise Specifically, this study investigates two significant features of this ethical dimension of palliative care – firstly, the teleological features that include the ‘goods’, aims or overall purpose which the practice seeks to achieve and secondly, the ethical frameworks that guide and inform practitioners towards these ends RATIONALE FOR THE INQUIRY Palliative care in Australia has undergone many changes since its humble beginnings and continues to grow as a specialised field Notably, this growth has accelerated in Australia since the 1980s The broader ethical dimension of the practice of palliative care was chosen to be of significance for this research endeavour There are several reasons for this Firstly, McNamara suggests that the contemporary practice of palliative has lost the original values of the hospice movementv Secondly, contemporary palliative care in Australia, it seems, can be viewed as being, more than ever before, embedded into mainstream healthcare Possibly because of this integration, the profession of palliative care may have adopted an ethical framework for practice stemming from biomedical ethics - a principle-based approachvi Thirdly, there are few studies that discuss these particular features of the ethical dimension of palliative care, except in terms of issues, dilemmas or problems In other words, there is inadequate attention being paid to a broader ethical inquiry of palliative care as it has developed since its origins Jennings surmises that “systematic reflection on ethics in the hospice field is curiously underdeveloped”vii This inquiry will focus on the current changes taking place in palliative care practice, and the role and influence of external values Research into this area will provide direction towards an articulation of the ethical specificity of palliative care This articulation could provide for a coherent ethical culture and agreed upon understandings of the purpose of palliative care 356 YOUR PARTICIPATION Your involvement would require a face to face conversational-interview for approximately hour (possibly longer) The types of questions I may ask to orient our conversation would include: When I say ‘the ethics of palliative care’, what does this mean to you? What you draw upon to ethically guide your practice? What you believe the overall purpose (or purposes) of palliative care practice to be? What you understand of the concept of autonomy? These interviews will be audio-taped and transcribed (word for word) and then sent to you for final verification and inclusion in the findings of the study This interview can take place in a location of your choice Interviews will be carried out between the months of June to December 2005 BENEFITS AND RISKS Overall, it is anticipated that the outcomes of this research will be a contribution to the ongoing development of the profession and the enhancement of end of life care Specifically, the end result of this inquiry will provide us with clear articulations of what palliative care seeks to achieve and some possible templates about how to so For you, the individual participant, it will be a chance to add your voice to the ongoing conversation about what palliative care seeks to achieve, thereby shaping the future identity of the practice of palliative care There are no expected risks in relation to your participation in this project, as you are familiar with the practices of palliative care on a daily basis Certainly, I would assume that you would access debriefing services in your organisation if the need arises CONSENT, CONFIDENTIALITY AND VOLUNTARY PARTICIPATION If you wish to be involved in this research project, then I would first need your permission This can be done by reading this invitation, asking any further questions and then reading and signing the consent form attached By signing this consent form you will be agreeing to the points on it Additionally, before commencing the interview I will again ask for your verbal consent You are consenting to the details of this interview being integrated into the final PhD thesis and other documentation (conference papers and journal articles) Confidentiality will be assured by not requesting your personal details or place of work The only identifying details I will use in this inquiry are your role e.g palliative care nurse and the type of palliative care context you work in e.g community based service No other personal details are required Your real name will not be used in any way All transcribed interviews will be kept secure and not be made available to others Finally, participation in this research inquiry is entirely voluntary Any subsequent decision to withdraw from the project will not involve any loss of benefits; and you may choose to discontinue participation at any time without comment or penalty QUESTIONS OR FURTHER INFORMATION If you have any questions regarding this research inquiry, I invite you to contact me personally: email: ma.wilson@qut.edu.au; phone: 3864 4780 / 0428 777809 Alternatively, you can contact my supervisor David Massey: email: d.massey@qut.edu.au; phone: 3864 4744 If you have any concerns or complaints about the ethical conduct of this project, please contact the QUT Research Ethics Officer at ethicscontact@qut.edu.au or 3864 2340 You can also write to the QUT Research Ethics Officer at: Office of Research, O Block Podium, QUT GP Campus, GPO Box 2434, Brisbane QLD 4001 I ask you to please retain this letter for future reference This research project has received Level One Ethical Clearance (QUT Ref No 4071H) through the University Human Research Ethics Committee (UHREC) 357 i Currow, D C & Nightingale, E M (2003) “A planning guide”: Developing a consensus document for palliative care service provision Medical Journal of Australia, 179, S23-S25 ii McNamara, B (2001) Fragile lives: Death, dying and care Crows Nest, NSW: Allen & Unwin Kearney, M (1992) Palliative medicine: Just another specialty? Palliative Medicine, 6, 39-46 Clark, D & Seymour, J (1999) Reflection on palliative care Buckingham, UK: Open University Press iii McNamara, B (1998b) “Good enough death”: An ethnography of hospice and palliative care (PhD Thesis) Department of Anthropology, University of Western Australia: Western Australia Bradshaw, A (1996) The spiritual dimension of hospice: The secularization of an ideal Social Science and Medicine, 43(3), 409419 iv ten Have, H & Clark, D (Eds.) (2002) The ethics of palliative care: European perspectives Buckingham, UK: Open University Press v McNamara, B (2001) vi Beauchamp, T L & Childress, J F (2001) Principles of biomedical ethics (5th ed.) New York: Oxford University Press vii Jennings, B (Ed.) (1997) Ethics in hospice care: Challenges to hospice values in a changing health care environment New York: The Haworth Press 358 ... Introduction 1.2 What is hospice palliative care? 1.2.1 The definitions of hospice palliative care 1.2.2 The values of hospice palliative care 1.2.3 The demarcation of hospice palliative care 1.2.4 Current... my preferred way of viewing the ethics of daily life The second is the work of a collaboration of European scholars who have explored the ethics of palliative care Their work in the Pallium project... the end of their life There is still an open moral wound in the care of the dying Although many of us in Western societies will turn our gaze away from the dying, and the care of the dying, there