Edited by David Clark, School of Social and Environmental Sustainability, University of Glasgow, UK and Annemarie Samuels, Institute of Cultural Anthropology and Development Sociology, Leiden University, the Netherlands

‘The range of perspectives represented is impressive and the care and management of terminal illness, whether our own or that of someone close to us, is something of which we might all be better informed. I suspect there may be many who will find something in this Research Handbook which is of interest to them.’

• Contents1 Scoping the field of end of life care and society 1David Clark and Annemarie SamuelsPART I Theories, methods, and boundaries in end of life care research2 Theorising end of life care 13Vibeke Graven, Michael Hviid Jacobsen and Helle Timm3 Ongoing dilemmas and new approaches in palliative care and end of life care research: methods, ethics, and patient and public involvement in the United Kingdom 29Clare Gardiner and Emilie Couchman4 Humanities collaborations in end of life care 47Jordan Owen McCullough and Anna Magdalena Elsner5 Public engagement in palliative and end of life care research 61Sonja McIlfatrick and Deborah Muldrew6 Total pain and human gut microbiota 81Marian Krawczyk7 Inclusiveness in research teams: reflections on the Te Ārai Palliative Care and End of Life Research Group, a decade on 99Tess Moeke-Maxwell, Merryn Gott and Brianna Smith8 Plural imaginaries: reflections on end of life care from India 115Devi VijayPART II Culture, communication, and context9 Homing in on societal changes in meanings around place of death 132Renske Visser10 Displacement and re-imagining end of life care 142Parin Dossa 11 Belonging at the end of life: genealogies of ‘culturally specific’ nursing home care in Europe 156Olivia Killias and Eva Soom Ammann12 Sociocultural diversity in approaching pain at the end of life 173Adrienne E. Strong and Megan D. Cogburn13 Bioethical frameworks in end of life care decision-making 188Sandra Martins Pereira, Paulo J. Borges and Pablo Hernández-Marrero14 Cultural communication in palliative care 212Liesbeth Mirjam van Vliet, Edison Iglesias de Oliveira Vidal, Masanori Mori, Constance Dahlin, Eve Namisango, Olaf Geerse and Diah MartinaPART III Fields of practice15 Standardisation of end of life care 232Shimon Tashiro and Tatsuya Morita16 Compassionate Communities 246Bert Quintiens and Steven Vanderstichelen17 New approaches to bereavement experience and research 268Lucy Selman18 Talking about dying and end of life care 291Gitte Koksvik19 Politics and practices of assisted dying 304Marcos Freire de Andrade Neves20 Death, dying, and design 319Bruce M. Tharp21 The arts in palliative care: critical perspectives on evidence and practice 336Giorgos Tsiris and Jenny Baxley LeePART IV Social inequalities22 End of life and poverty 354Maddy French and Yakubu Salifu23 Barriers to accessing end of life care for minority ethnic communities 367Sophie Law-Clucas and Jonathan Koffman24 Gender and end of life care work 381Merryn Gott, Tessa Morgan, Lisa Williams and Julia Slark25 Homelessness at the end of life 399Kelli I. Stajduhar and Ashley Mollison 26 Dying in the Margins: a case study of methods and impacts 419Sam Quinn and Naomi Richards27 Who gets specialised care at the end of life? 443Stephen Connor and Carlos CentenoPART V Policy interventions28 The opportunities and limitations of ‘choice’ at the end of life 461Sandy Whitelaw and David Clark29 National policies for end of life care 478Chao Fang30 Public health interactions with palliative and end of life care 491David Clark and Sandy Whitelaw31 The global spread of palliative care: how models, ideas, and practices travel 508Natashe Lemos Dekker32 Mapping the development of palliative care in resource-poor settings: examples from African countries and contexts 521Eve Namisango, William E. Rosa and Yakubu Salifu33 Palliative care as a global health issue 534Joseph Clark34 Concluding points and future agendas: afterthoughts and afterlives 551Annemarie Samuels and David Clark

Edited by David Clark, School of Social and Environmental Sustainability, University of Glasgow, UK and Annemarie Samuels, Institute of Cultural Anthropology and Development Sociology, Leiden University, the Netherlands

‘The range of perspectives represented is impressive and the care and management of terminal illness, whether our own or that of someone close to us, is something of which we might all be better informed. I suspect there may be many who will find something in this Research Handbook which is of interest to them.’

• Contents1 Scoping the field of end of life care and society 1David Clark and Annemarie SamuelsPART I Theories, methods, and boundaries in end of life care research2 Theorising end of life care 13Vibeke Graven, Michael Hviid Jacobsen and Helle Timm3 Ongoing dilemmas and new approaches in palliative care and end of life care research: methods, ethics, and patient and public involvement in the United Kingdom 29Clare Gardiner and Emilie Couchman4 Humanities collaborations in end of life care 47Jordan Owen McCullough and Anna Magdalena Elsner5 Public engagement in palliative and end of life care research 61Sonja McIlfatrick and Deborah Muldrew6 Total pain and human gut microbiota 81Marian Krawczyk7 Inclusiveness in research teams: reflections on the Te Ārai Palliative Care and End of Life Research Group, a decade on 99Tess Moeke-Maxwell, Merryn Gott and Brianna Smith8 Plural imaginaries: reflections on end of life care from India 115Devi VijayPART II Culture, communication, and context9 Homing in on societal changes in meanings around place of death 132Renske Visser10 Displacement and re-imagining end of life care 142Parin Dossa 11 Belonging at the end of life: genealogies of ‘culturally specific’ nursing home care in Europe 156Olivia Killias and Eva Soom Ammann12 Sociocultural diversity in approaching pain at the end of life 173Adrienne E. Strong and Megan D. Cogburn13 Bioethical frameworks in end of life care decision-making 188Sandra Martins Pereira, Paulo J. Borges and Pablo Hernández-Marrero14 Cultural communication in palliative care 212Liesbeth Mirjam van Vliet, Edison Iglesias de Oliveira Vidal, Masanori Mori, Constance Dahlin, Eve Namisango, Olaf Geerse and Diah MartinaPART III Fields of practice15 Standardisation of end of life care 232Shimon Tashiro and Tatsuya Morita16 Compassionate Communities 246Bert Quintiens and Steven Vanderstichelen17 New approaches to bereavement experience and research 268Lucy Selman18 Talking about dying and end of life care 291Gitte Koksvik19 Politics and practices of assisted dying 304Marcos Freire de Andrade Neves20 Death, dying, and design 319Bruce M. Tharp21 The arts in palliative care: critical perspectives on evidence and practice 336Giorgos Tsiris and Jenny Baxley LeePART IV Social inequalities22 End of life and poverty 354Maddy French and Yakubu Salifu23 Barriers to accessing end of life care for minority ethnic communities 367Sophie Law-Clucas and Jonathan Koffman24 Gender and end of life care work 381Merryn Gott, Tessa Morgan, Lisa Williams and Julia Slark25 Homelessness at the end of life 399Kelli I. Stajduhar and Ashley Mollison 26 Dying in the Margins: a case study of methods and impacts 419Sam Quinn and Naomi Richards27 Who gets specialised care at the end of life? 443Stephen Connor and Carlos CentenoPART V Policy interventions28 The opportunities and limitations of ‘choice’ at the end of life 461Sandy Whitelaw and David Clark29 National policies for end of life care 478Chao Fang30 Public health interactions with palliative and end of life care 491David Clark and Sandy Whitelaw31 The global spread of palliative care: how models, ideas, and practices travel 508Natashe Lemos Dekker32 Mapping the development of palliative care in resource-poor settings: examples from African countries and contexts 521Eve Namisango, William E. Rosa and Yakubu Salifu33 Palliative care as a global health issue 534Joseph Clark34 Concluding points and future agendas: afterthoughts and afterlives 551Annemarie Samuels and David Clark

Edited by David Clark, School of Social and Environmental Sustainability, University of Glasgow, UK and Annemarie Samuels, Institute of Cultural Anthropology and Development Sociology, Leiden University, the Netherlands

‘The range of perspectives represented is impressive and the care and management of terminal illness, whether our own or that of someone close to us, is something of which we might all be better informed. I suspect there may be many who will find something in this Research Handbook which is of interest to them.’

• Contents1 Scoping the field of end of life care and society 1David Clark and Annemarie SamuelsPART I Theories, methods, and boundaries in end of life care research2 Theorising end of life care 13Vibeke Graven, Michael Hviid Jacobsen and Helle Timm3 Ongoing dilemmas and new approaches in palliative care and end of life care research: methods, ethics, and patient and public involvement in the United Kingdom 29Clare Gardiner and Emilie Couchman4 Humanities collaborations in end of life care 47Jordan Owen McCullough and Anna Magdalena Elsner5 Public engagement in palliative and end of life care research 61Sonja McIlfatrick and Deborah Muldrew6 Total pain and human gut microbiota 81Marian Krawczyk7 Inclusiveness in research teams: reflections on the Te Ārai Palliative Care and End of Life Research Group, a decade on 99Tess Moeke-Maxwell, Merryn Gott and Brianna Smith8 Plural imaginaries: reflections on end of life care from India 115Devi VijayPART II Culture, communication, and context9 Homing in on societal changes in meanings around place of death 132Renske Visser10 Displacement and re-imagining end of life care 142Parin Dossa 11 Belonging at the end of life: genealogies of ‘culturally specific’ nursing home care in Europe 156Olivia Killias and Eva Soom Ammann12 Sociocultural diversity in approaching pain at the end of life 173Adrienne E. Strong and Megan D. Cogburn13 Bioethical frameworks in end of life care decision-making 188Sandra Martins Pereira, Paulo J. Borges and Pablo Hernández-Marrero14 Cultural communication in palliative care 212Liesbeth Mirjam van Vliet, Edison Iglesias de Oliveira Vidal, Masanori Mori, Constance Dahlin, Eve Namisango, Olaf Geerse and Diah MartinaPART III Fields of practice15 Standardisation of end of life care 232Shimon Tashiro and Tatsuya Morita16 Compassionate Communities 246Bert Quintiens and Steven Vanderstichelen17 New approaches to bereavement experience and research 268Lucy Selman18 Talking about dying and end of life care 291Gitte Koksvik19 Politics and practices of assisted dying 304Marcos Freire de Andrade Neves20 Death, dying, and design 319Bruce M. Tharp21 The arts in palliative care: critical perspectives on evidence and practice 336Giorgos Tsiris and Jenny Baxley LeePART IV Social inequalities22 End of life and poverty 354Maddy French and Yakubu Salifu23 Barriers to accessing end of life care for minority ethnic communities 367Sophie Law-Clucas and Jonathan Koffman24 Gender and end of life care work 381Merryn Gott, Tessa Morgan, Lisa Williams and Julia Slark25 Homelessness at the end of life 399Kelli I. Stajduhar and Ashley Mollison 26 Dying in the Margins: a case study of methods and impacts 419Sam Quinn and Naomi Richards27 Who gets specialised care at the end of life? 443Stephen Connor and Carlos CentenoPART V Policy interventions28 The opportunities and limitations of ‘choice’ at the end of life 461Sandy Whitelaw and David Clark29 National policies for end of life care 478Chao Fang30 Public health interactions with palliative and end of life care 491David Clark and Sandy Whitelaw31 The global spread of palliative care: how models, ideas, and practices travel 508Natashe Lemos Dekker32 Mapping the development of palliative care in resource-poor settings: examples from African countries and contexts 521Eve Namisango, William E. Rosa and Yakubu Salifu33 Palliative care as a global health issue 534Joseph Clark34 Concluding points and future agendas: afterthoughts and afterlives 551Annemarie Samuels and David Clark