543426 research-article2014
PMJ0010.1177/0269216314543426Palliative MedicineEditorial
Editorial Palliative Medicine 2014, Vol. 28(8) 997–999 © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216314543426 pmj.sagepub.com
Advance care planning: Whose agenda is it anyway? One of the challenges we face in end-of-life care today is juggling the multiple agendas within advance care planning. Whose agenda is it anyway? Patients, families, health-care professionals, funders or commissioners of care, legislative frameworks or society as a whole? How do we support adults with a life-shortening illness to live with, prepare and plan for dying in an individual way without focussing only on planning for incapacity, treatment decisions or fitting them into a preconceived and possibly inflexible system of how a good death should be. How do we bring together the multiple agendas allowing equal weight to both the process and outcomes? Advance care planning has to be more than a ‘tick box policy driven formulaic response’.1 Advance care planning for adults with a life-shortening illness is an overarching term concerned with anticipatory end-of-life conversations, subsequent documentation of wishes and care as well as the right to refuse in advance treatments for self or others (e.g. as a proxy or surrogate decision-maker) in anticipation of a future loss of capacity. It predominately focuses on planning for the ‘good’ death event itself, with elements of individual needs, anticipated withdrawal or withholding of interventions, symptom control, dying in the expressed preferred place of death as well as not being admitted to hospital. As a concept, it has been present in the international literature since the latter half of the 20th century.2 Seminal cases concerning persistent vegetative states such as Karen Ann Quinlan, Nancy Cruzan, Terri Schiavo and Tony Bland have highlighted the importance of legislative frameworks, the need to plan for incapacity and perceptions about autonomy and decision-making reflected in frameworks such as the Patient Self Determination Act (1990) in the United States, the Mental Capacity Act (2005) in the United Kingdom and the Australian National Framework for Advance Care Directives (2011). Our current knowledge and practice stem from a variety of clinical audit, service evaluation and research literature often based upon patient, family or health-care professional interventions. What we know is that where discussions and decisions are made in advance, then expressed
goals such as achievement of preferred place of death and reduction of inappropriate hospital admissions occurs more frequently as well as the process in itself can be therapeutic.1,2 Much of the literature identifies the need for early conversations, understanding the values and support networks around people, previous death experiences, socio-economic and diversity influences as well as healthcare professional confidence and competence in advance care planning conversations. There are competing agendas in advance care planning. One of these is the plethora of international terms, documents and legal frameworks with varying legislative powers making it challenging to negotiate the literature and translate to practice. For example, in England and Wales, the terminology is advance care planning, advance statements (written or verbal expression of wishes and preferences such as the preferred priorities for care and thinking ahead documents – not legally binding), advance decision to refuse treatment (ADRT) (in advance written refusal of specific treatments known as ADRT – legally binding) and lasting power of attorney (appointed in advance proxy decision-maker for health and welfare and/or property and affairs – legally binding). Documents such as Treatment Escalation Plans (TEP), Health Emergency Plans (HEP) and Universal Form of Treatment Options (UFTO) are also developed to communicate between services decisions such as Do Not Attempt Cardio Pulmonary Resuscitation. In contrast, despite the legal status being unclear,3 Ireland uses the term ‘advance care directive’ which entitles a person to request in advance either the refusal of or consent to certain medical treatment if that person is not competent to consent or refuse at the time such refusal or consent is required. In the United States terms used include advance care planning, statements of wishes and preferences (a values history), instructional advance directives (sometimes known as a living will) and durable power of attorney for health care as well as documents such as Five Wishes and Physician Orders for Life Sustaining Treatments (POLST). The variance of terms and the legal frameworks behind them can be challenging in practice. For example, in England and Wales, the ADRT document is specific about wording to refuse life sustaining treatment and using the correct form is important in case of future disputes. There is also the challenge that despite an abundance of literature since the 1990s, evidence for successful
Downloaded from pmj.sagepub.com at University of Sydney on May 1, 2015
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Palliative Medicine 28(8)
advance care planning interventions remains unclear in terms of what are the individual (e.g. patients, families, health-care professional or systems) barriers, blocks or goals of advance care planning. This ranges from who should be initiating advance care planning conversations (and with what type of education) reflected in Burge4 and Crozier5 to Lovell and Yates’6 considerations of the complex and multifaceted contextual factors influencing the uptake of advance care planning, spanning the social and cultural beliefs of patients, families and health professionals, as well as the structural constraints of health and legal systems. Brinkman-Stoppelenburg et al.7 argue that advance care planning is more than just the discussion and documentation of medical interventions, commenting that there tends to be an increasing research focus on advance directives and achievement of out-of-hospital care. It is also naive not to consider the economic cost of dying (in addition to the wishes of individuals) as an influence on advance care planning particularly in terms of reduction of hospital admissions at the end of life. Gott8 highlights this debate challenging us to not only understand more about what people value about dying at home and how the medicalisation of dying has influenced hospital admissions but also commenting that ‘hospitals can become part of the solution, rather than “the problem” we all want to avoid’. A further challenge is the emphasis on measurable and reportable advance care planning health-care professional outcomes such as number of advance care planning documents completed, achievement of expressed preferred place of death, reduction of hospital admissions, healthcare professional communication and advance care planning education initiatives and palliative care activity. These patient goals and health-care professional outcomes are all appropriate subjects for investigation and practice. However, this has overshadowed other crucial aspects which influence how individuals and their families live with, talk about, prepare or plan for dying in their physical, emotional, social and spiritual worlds. The influence of concepts such as death awareness, acceptance, anxiety and denial are disconnected to advance care planning activity despite ‘death being terrifying because it is omnipotent, omnipresent and brutally impartial … death has a thousand faces and dying has a million ways’.9 Death denial is fractured with differences of opinion about whether denial is an obstacle to a ‘good death’ as not preparing or planning for dying is seen as pathological rather than functional denial: ‘leading to negative labelling of individuals who do not participate in the correct way to die’.10 Unconsciously, in our pursuit to achieve the good death, through a systematic tick box of good death definitions and outcomes and in the struggle to find a common language11 to describe the experience of a life-shortening illness, perhaps we have over-medicalised by separating the good death event too far from the individual experience of discussing, living
with, preparing and planning for dying. This is far from the original vision where ‘the primary goal is not to medicalise dying’.12 A final challenge often not linked to advance care planning is the parallel public conversations about society’s perspective on death and dying ranging from the Assisted Dying to Death Literacy programmes such as Respecting Choices (United States), Ground Swell (Australia), Speak Up (Canada), Dying Matters (United Kingdom) and Silver Pages (Singapore). The Right to Die or Assisted Dying debate articulated by organisations such as Dignity in Dying (United Kingdom), Right to Die (Canada) and the Voluntary Euthanasia Society (New Zealand) is carried out in the public domain, often in the social media and is challenging for many health-care professionals. If advance care planning is concerned with the achievement of a good death from the individual’s viewpoint, where does the conversations about the right to die at a time and place of that individuals choosing stand in terms of advance care planning discussions. As practitioners, how do we provide a therapeutic space to have these conversations as advance care planning rather than assisted dying discussions and the associated legal ramifications? How do we as a society increase awareness about death and dying incorporating all views? The individual experience of living with, preparing and planning for dying is not new in advance care planning. Singer et al.13 identified that advance care planning was not just concerned with preparing for incapacity, autonomy and exercise of control. It involves preparing for death, social processes and personal relationships.1,13 How people want to face their own mortality and plan for their end of life is a personal experience lived within the context of their lives and relationships. As health-care professionals, we have to find the courage and competence in discussing, delivering and evaluating accessible and flexible systems of care to support what matters most to individuals rather than fit them into reductionist preconceived tick boxes for a good death. Advance care planning deserves more of our interdisciplinary attention, conversations, health research and practice, joining up professions, social movements, cultural and psychological research, health and social care policy. After all, whose agenda is it anyway? References 1. Thomas K. Introduction to advance care planning in end of life care. Oxford University Press, 2011. 2. Seymour J and Horne G. Advance care planning for the end of life: an overview in advance care planning in end of life care. Oxford University Press, 2011. 3. Donnellan L. Advance care directives and the position in Ireland: what lessons can Ireland learn from the United Kingdom, the United States and Europe? Asian Soc Sci 2008; 4(1): 108–115.
Downloaded from pmj.sagepub.com at University of Sydney on May 1, 2015
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Editorial 4. Burge AT. Advance care planning education in pulmonary rehabilitation: a qualitative study exploring participant perspectives: letter to the editor. Palliat Med 2014; 28: 1069–1070. 5. Crozier TM. Advance care planning education in pulmonary rehabilitation: a qualitative study exploring participant perspectives. Palliat Med 2014; 28: 92–93. 6. Lovell A and Yates P. Advance care planning in palliative care: a systematic literature review of the contextual factors influencing its uptake 2008–2012. Palliat Med 2014; 28: 1026–1035. 7. Brinkman-Stoppelenburg A, Rietjens JAC and van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med 2014; 28: 1000–1025. 8. Gott M. Avoidable for whom? Hospital use at the end of life. Palliat Med 2014; 28(7): 917–918. 9. Wong P. From death anxiety to death acceptance. In: Keynote address delivered at the conference on life and death education, National Changhua University of Education, Changhua, Taiwan, 14 December 2002. 10. Zimmerman C. Death denial: obstacle or instrument for palliative care? An analysis of clinical literature. Sociol Health Ill 2007; 29(2): 297–314.
11. Radbruch L and Payne S. White paper on standards and norms for hospice and palliative care in Europe: part 1 recommendations from the European Association for Palliative Care. Eur J Palliat Care 2009; 16(6): 278–289. 12. Hamilton J. Dr Balfour Mount and the cruel irony of our care for the dying. Can Med Assoc J 1995; 153(3): 334–336. 13. Singer PA, Martin DK, Lavery JV, et al. Reconceptualizing advance care planning from the patient’s perspective. Arch Intern Med 1998; 158(8): 879–884 (PMID: 9570174). Sarah Russell1,2,3 1Education
and Research Department, Hospice of St Francis, Hertfordshire, UK 2Education and Research Department, Peace Hospice Care, Hertfordshire, UK 3CRIPACC, University of Hertfordshire, Hertfordshire, UK Corresponding author: Sarah Russell, Hospice of St Francis, Spring Garden Lane, Hertfordshire, HP4 3GW, UK. Email: [email protected]
Downloaded from pmj.sagepub.com at University of Sydney on May 1, 2015
PMJ0010.1177/0269216314543426Palliative MedicineEditorial
Editorial Palliative Medicine 2014, Vol. 28(8) 997–999 © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216314543426 pmj.sagepub.com
Advance care planning: Whose agenda is it anyway? One of the challenges we face in end-of-life care today is juggling the multiple agendas within advance care planning. Whose agenda is it anyway? Patients, families, health-care professionals, funders or commissioners of care, legislative frameworks or society as a whole? How do we support adults with a life-shortening illness to live with, prepare and plan for dying in an individual way without focussing only on planning for incapacity, treatment decisions or fitting them into a preconceived and possibly inflexible system of how a good death should be. How do we bring together the multiple agendas allowing equal weight to both the process and outcomes? Advance care planning has to be more than a ‘tick box policy driven formulaic response’.1 Advance care planning for adults with a life-shortening illness is an overarching term concerned with anticipatory end-of-life conversations, subsequent documentation of wishes and care as well as the right to refuse in advance treatments for self or others (e.g. as a proxy or surrogate decision-maker) in anticipation of a future loss of capacity. It predominately focuses on planning for the ‘good’ death event itself, with elements of individual needs, anticipated withdrawal or withholding of interventions, symptom control, dying in the expressed preferred place of death as well as not being admitted to hospital. As a concept, it has been present in the international literature since the latter half of the 20th century.2 Seminal cases concerning persistent vegetative states such as Karen Ann Quinlan, Nancy Cruzan, Terri Schiavo and Tony Bland have highlighted the importance of legislative frameworks, the need to plan for incapacity and perceptions about autonomy and decision-making reflected in frameworks such as the Patient Self Determination Act (1990) in the United States, the Mental Capacity Act (2005) in the United Kingdom and the Australian National Framework for Advance Care Directives (2011). Our current knowledge and practice stem from a variety of clinical audit, service evaluation and research literature often based upon patient, family or health-care professional interventions. What we know is that where discussions and decisions are made in advance, then expressed
goals such as achievement of preferred place of death and reduction of inappropriate hospital admissions occurs more frequently as well as the process in itself can be therapeutic.1,2 Much of the literature identifies the need for early conversations, understanding the values and support networks around people, previous death experiences, socio-economic and diversity influences as well as healthcare professional confidence and competence in advance care planning conversations. There are competing agendas in advance care planning. One of these is the plethora of international terms, documents and legal frameworks with varying legislative powers making it challenging to negotiate the literature and translate to practice. For example, in England and Wales, the terminology is advance care planning, advance statements (written or verbal expression of wishes and preferences such as the preferred priorities for care and thinking ahead documents – not legally binding), advance decision to refuse treatment (ADRT) (in advance written refusal of specific treatments known as ADRT – legally binding) and lasting power of attorney (appointed in advance proxy decision-maker for health and welfare and/or property and affairs – legally binding). Documents such as Treatment Escalation Plans (TEP), Health Emergency Plans (HEP) and Universal Form of Treatment Options (UFTO) are also developed to communicate between services decisions such as Do Not Attempt Cardio Pulmonary Resuscitation. In contrast, despite the legal status being unclear,3 Ireland uses the term ‘advance care directive’ which entitles a person to request in advance either the refusal of or consent to certain medical treatment if that person is not competent to consent or refuse at the time such refusal or consent is required. In the United States terms used include advance care planning, statements of wishes and preferences (a values history), instructional advance directives (sometimes known as a living will) and durable power of attorney for health care as well as documents such as Five Wishes and Physician Orders for Life Sustaining Treatments (POLST). The variance of terms and the legal frameworks behind them can be challenging in practice. For example, in England and Wales, the ADRT document is specific about wording to refuse life sustaining treatment and using the correct form is important in case of future disputes. There is also the challenge that despite an abundance of literature since the 1990s, evidence for successful
Downloaded from pmj.sagepub.com at University of Sydney on May 1, 2015
998
Palliative Medicine 28(8)
advance care planning interventions remains unclear in terms of what are the individual (e.g. patients, families, health-care professional or systems) barriers, blocks or goals of advance care planning. This ranges from who should be initiating advance care planning conversations (and with what type of education) reflected in Burge4 and Crozier5 to Lovell and Yates’6 considerations of the complex and multifaceted contextual factors influencing the uptake of advance care planning, spanning the social and cultural beliefs of patients, families and health professionals, as well as the structural constraints of health and legal systems. Brinkman-Stoppelenburg et al.7 argue that advance care planning is more than just the discussion and documentation of medical interventions, commenting that there tends to be an increasing research focus on advance directives and achievement of out-of-hospital care. It is also naive not to consider the economic cost of dying (in addition to the wishes of individuals) as an influence on advance care planning particularly in terms of reduction of hospital admissions at the end of life. Gott8 highlights this debate challenging us to not only understand more about what people value about dying at home and how the medicalisation of dying has influenced hospital admissions but also commenting that ‘hospitals can become part of the solution, rather than “the problem” we all want to avoid’. A further challenge is the emphasis on measurable and reportable advance care planning health-care professional outcomes such as number of advance care planning documents completed, achievement of expressed preferred place of death, reduction of hospital admissions, healthcare professional communication and advance care planning education initiatives and palliative care activity. These patient goals and health-care professional outcomes are all appropriate subjects for investigation and practice. However, this has overshadowed other crucial aspects which influence how individuals and their families live with, talk about, prepare or plan for dying in their physical, emotional, social and spiritual worlds. The influence of concepts such as death awareness, acceptance, anxiety and denial are disconnected to advance care planning activity despite ‘death being terrifying because it is omnipotent, omnipresent and brutally impartial … death has a thousand faces and dying has a million ways’.9 Death denial is fractured with differences of opinion about whether denial is an obstacle to a ‘good death’ as not preparing or planning for dying is seen as pathological rather than functional denial: ‘leading to negative labelling of individuals who do not participate in the correct way to die’.10 Unconsciously, in our pursuit to achieve the good death, through a systematic tick box of good death definitions and outcomes and in the struggle to find a common language11 to describe the experience of a life-shortening illness, perhaps we have over-medicalised by separating the good death event too far from the individual experience of discussing, living
with, preparing and planning for dying. This is far from the original vision where ‘the primary goal is not to medicalise dying’.12 A final challenge often not linked to advance care planning is the parallel public conversations about society’s perspective on death and dying ranging from the Assisted Dying to Death Literacy programmes such as Respecting Choices (United States), Ground Swell (Australia), Speak Up (Canada), Dying Matters (United Kingdom) and Silver Pages (Singapore). The Right to Die or Assisted Dying debate articulated by organisations such as Dignity in Dying (United Kingdom), Right to Die (Canada) and the Voluntary Euthanasia Society (New Zealand) is carried out in the public domain, often in the social media and is challenging for many health-care professionals. If advance care planning is concerned with the achievement of a good death from the individual’s viewpoint, where does the conversations about the right to die at a time and place of that individuals choosing stand in terms of advance care planning discussions. As practitioners, how do we provide a therapeutic space to have these conversations as advance care planning rather than assisted dying discussions and the associated legal ramifications? How do we as a society increase awareness about death and dying incorporating all views? The individual experience of living with, preparing and planning for dying is not new in advance care planning. Singer et al.13 identified that advance care planning was not just concerned with preparing for incapacity, autonomy and exercise of control. It involves preparing for death, social processes and personal relationships.1,13 How people want to face their own mortality and plan for their end of life is a personal experience lived within the context of their lives and relationships. As health-care professionals, we have to find the courage and competence in discussing, delivering and evaluating accessible and flexible systems of care to support what matters most to individuals rather than fit them into reductionist preconceived tick boxes for a good death. Advance care planning deserves more of our interdisciplinary attention, conversations, health research and practice, joining up professions, social movements, cultural and psychological research, health and social care policy. After all, whose agenda is it anyway? References 1. Thomas K. Introduction to advance care planning in end of life care. Oxford University Press, 2011. 2. Seymour J and Horne G. Advance care planning for the end of life: an overview in advance care planning in end of life care. Oxford University Press, 2011. 3. Donnellan L. Advance care directives and the position in Ireland: what lessons can Ireland learn from the United Kingdom, the United States and Europe? Asian Soc Sci 2008; 4(1): 108–115.
Downloaded from pmj.sagepub.com at University of Sydney on May 1, 2015
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Editorial 4. Burge AT. Advance care planning education in pulmonary rehabilitation: a qualitative study exploring participant perspectives: letter to the editor. Palliat Med 2014; 28: 1069–1070. 5. Crozier TM. Advance care planning education in pulmonary rehabilitation: a qualitative study exploring participant perspectives. Palliat Med 2014; 28: 92–93. 6. Lovell A and Yates P. Advance care planning in palliative care: a systematic literature review of the contextual factors influencing its uptake 2008–2012. Palliat Med 2014; 28: 1026–1035. 7. Brinkman-Stoppelenburg A, Rietjens JAC and van der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med 2014; 28: 1000–1025. 8. Gott M. Avoidable for whom? Hospital use at the end of life. Palliat Med 2014; 28(7): 917–918. 9. Wong P. From death anxiety to death acceptance. In: Keynote address delivered at the conference on life and death education, National Changhua University of Education, Changhua, Taiwan, 14 December 2002. 10. Zimmerman C. Death denial: obstacle or instrument for palliative care? An analysis of clinical literature. Sociol Health Ill 2007; 29(2): 297–314.
11. Radbruch L and Payne S. White paper on standards and norms for hospice and palliative care in Europe: part 1 recommendations from the European Association for Palliative Care. Eur J Palliat Care 2009; 16(6): 278–289. 12. Hamilton J. Dr Balfour Mount and the cruel irony of our care for the dying. Can Med Assoc J 1995; 153(3): 334–336. 13. Singer PA, Martin DK, Lavery JV, et al. Reconceptualizing advance care planning from the patient’s perspective. Arch Intern Med 1998; 158(8): 879–884 (PMID: 9570174). Sarah Russell1,2,3 1Education
and Research Department, Hospice of St Francis, Hertfordshire, UK 2Education and Research Department, Peace Hospice Care, Hertfordshire, UK 3CRIPACC, University of Hertfordshire, Hertfordshire, UK Corresponding author: Sarah Russell, Hospice of St Francis, Spring Garden Lane, Hertfordshire, HP4 3GW, UK. Email: [email protected]
Downloaded from pmj.sagepub.com at University of Sydney on May 1, 2015
