Palliative care provision in long-term care facilities differs across Europe: Results of a cross-sectional study in six European countries (PACE)

Background: While the need for palliative care in long-term care facilities is growing, it is unknown whether palliative care in this setting is sufficiently developed. Aim: To describe and compare in six European countries palliative care provision in long-term care facilities and to assess associations between patient, facility and advance care planning factors and receipt and timing of palliative care. Design: Cross-sectional after-death survey regarding care provided to long-term care residents in Belgium, England, Finland, Italy, the Netherlands and Poland. Generalized estimating equations were used for analyses. Setting/participants: Nurses or care assistants who are most involved in care for the resident. Results: We included 1298 residents in 300 facilities, of whom a majority received palliative care in most countries (England: 72.6%–Belgium: 77.9%), except in Poland (14.0%) and Italy (32.1%). Palliative care typically started within 2 weeks before death and was often provided by the treating physician (England: 75%–the Netherlands: 98.8%). A palliative care specialist was frequently involved in Belgium and Poland (57.1% and 86.7%). Residents with cancer, dementia or a contact person in their record more often received palliative care, and it started earlier for residents with whom the nurse had spoken about treatments or the preferred course of care at the end of life. Conclusion: The late initiation of palliative care (especially when advance care planning is lacking) and palliative care for residents without cancer, dementia or closely involved relatives deserve attention in all countries. Diversity in palliative care organization might be related to different levels of its development.

[1]  L. Deliens,et al.  The palliative care knowledge of nursing home staff: The EU FP7 PACE cross-sectional survey in 322 nursing homes in six European countries , 2018, Palliative medicine.

[2]  Michael Hoerger,et al.  Defining the Elements of Early Palliative Care That Are Associated With Patient-Reported Outcomes and the Delivery of End-of-Life Care. , 2017, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[3]  J. V. van Delden,et al.  Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. , 2017, The Lancet. Oncology.

[4]  James D. Murphy,et al.  Effect of Palliative Care on Aggressiveness of End-of-Life Care Among Patients With Advanced Cancer. , 2017, Journal of oncology practice.

[5]  G. Rücker,et al.  Early palliative care for adults with advanced cancer. , 2017, The Cochrane database of systematic reviews.

[6]  S. Payne,et al.  Palliative Care Development in European Care Homes and Nursing Homes: Application of a Typology of Implementation , 2017, Journal of the American Medical Directors Association.

[7]  Susan C. Miller,et al.  Palliative Care Consultations in Nursing Homes and Reductions in Acute Care Use and Potentially Burdensome End‐of‐Life Transitions , 2016, Journal of the American Geriatrics Society.

[8]  B. Onwuteaka-Philipsen,et al.  Comparing Palliative Care in Care Homes Across Europe (PACE): Protocol of a Cross-sectional Study of Deceased Residents in 6 EU Countries. , 2016, Journal of the American Medical Directors Association.

[9]  W. Lim,et al.  The Effects of Advance Care Planning Interventions on Nursing Home Residents: A Systematic Review. , 2016, Journal of the American Medical Directors Association.

[10]  K. Kerr,et al.  The Costs of Waiting: Implications of the Timing of Palliative Care Consultation among a Cohort of Decedents at a Comprehensive Cancer Center. , 2016, Journal of palliative medicine.

[11]  L. Deliens,et al.  What Are Physicians' Reasons for Not Referring People with Life-Limiting Illnesses to Specialist Palliative Care Services? A Nationwide Survey , 2015, PloS one.

[12]  Thomas J. Smith,et al.  Early integration of palliative care into oncology: evidence, challenges and barriers. , 2015, Annals of Palliative Medicine.

[13]  J. Teno,et al.  Hospice Care in Assisted Living Facilities Versus at Home: Results of a Multisite Cohort Study , 2015, Journal of The American Geriatrics Society.

[14]  G. Albers,et al.  Palliative care for older people: a public health perspective , 2015 .

[15]  A. Norberg,et al.  First-Line Nursing Home Managers in Sweden and their Views on Leadership and Palliative Care , 2014, The open nursing journal.

[16]  J. Temel,et al.  The integration of early palliative care with oncology care: the time has come for a new tradition. , 2014, Journal of the National Comprehensive Cancer Network : JNCCN.

[17]  L. Radbruch,et al.  Consensus on quality indicators to assess the organisation of palliative cancer and dementia care applicable across national healthcare systems and selected by international experts , 2014, BMC Health Services Research.

[18]  Allan Donner,et al.  Early palliative care for patients with advanced cancer: a cluster-randomised controlled trial , 2014, The Lancet.

[19]  P. Yates,et al.  Advance Care Planning in palliative care: A systematic literature review of the contextual factors influencing its uptake 2008–2012 , 2014, Palliative medicine.

[20]  A. van der Heide,et al.  The effects of advance care planning on end-of-life care: A systematic review , 2014, Palliative medicine.

[21]  B. Onwuteaka-Philipsen,et al.  End-of-life care in general practice: A cross-sectional, retrospective survey of ‘cancer’, ‘organ failure’ and ‘old-age/dementia’ patients , 2014, Palliative medicine.

[22]  Philip Larkin,et al.  White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care , 2014, Palliative medicine.

[23]  R Core Team,et al.  R: A language and environment for statistical computing. , 2014 .

[24]  B. Onwuteaka-Philipsen,et al.  Palliative Care Service Use in Four European Countries: A Cross-National Retrospective Study via Representative Networks of General Practitioners , 2013, PloS one.

[25]  L. Deliens,et al.  Referral to palliative care in COPD and other chronic diseases: a population-based study. , 2013, Respiratory medicine.

[26]  B. Hanratty,et al.  From 'conductor' to 'second fiddle': older adult care recipients' perspectives on transitions in family caring at hospital admission. , 2013, International journal of nursing studies.

[27]  L. Venturato,et al.  Organisational Culture in Residential Aged Care Facilities: A Cross-Sectional Observational Study , 2013, PloS one.

[28]  Thomas J. Smith,et al.  Doing palliative care in the oncology office. , 2013, Journal of oncology practice.

[29]  A. Street,et al.  Is an advance care planning model feasible in community palliative care? A multi-site action research approach. , 2012, Journal of advanced nursing.

[30]  M. Echteld,et al.  Older people dying with dementia: a nationwide study , 2012, International Psychogeriatrics.

[31]  I. Higginson,et al.  Culture and End of Life Care: A Scoping Exercise in Seven European Countries , 2012, PloS one.

[32]  C. Gardiner,et al.  ‘That’s part of everybody’s job’: the perspectives of health care staff in England and New Zealand on the meaning and remit of palliative care , 2012, Palliative medicine.

[33]  Harriet Finne-Soveri,et al.  Assessment of nursing home residents in Europe: the Services and Health for Elderly in Long TERm care (SHELTER) study , 2012, BMC Health Services Research.

[34]  Susan C. Miller,et al.  Advanced Dementia: State of the Art and Priorities for the Next Decade , 2012, Annals of Internal Medicine.

[35]  A. Sidebottom,et al.  Disease specific advance care planning for heart failure patients: implementation in a large health system. , 2011, Journal of palliative medicine.

[36]  Susan C. Miller,et al.  How valid are the responses to nursing home survey questions? Some issues and concerns. , 2011, The Gerontologist.

[37]  F. De Conno,et al.  Awareness, understanding and attitudes of Italians regarding palliative care. , 2011, Annali dell'Istituto superiore di sanita.

[38]  S. Hall Palliative care for older people : better practices , 2011 .

[39]  J. Steen Dying with dementia: what we know after more than a decade of research. , 2010 .

[40]  Susan C. Miller,et al.  Vigilant at the end of life: family advocacy in the nursing home. , 2010, Journal of palliative medicine.

[41]  J. T. van der Steen Dying with dementia: what we know after more than a decade of research. , 2010, Journal of Alzheimer's disease : JAD.

[42]  L. Radbruch,et al.  White Paper on standards and norms for hospice and palliative care in Europe : part 2. , 2009 .

[43]  F. Elsner,et al.  A matter of definition – key elements identified in a discourse analysis of definitions of palliative care , 2008, Palliative medicine.

[44]  D. Clark From margins to centre: a review of the history of palliative care in cancer. , 2007, The Lancet. Oncology.

[45]  L. Hanson,et al.  A quality improvement intervention to increase palliative care in nursing homes. , 2005, Journal of palliative medicine.

[46]  A. Sheikh,et al.  Illness trajectories and palliative care , 2005, BMJ : British Medical Journal.

[47]  J. Lynn,et al.  Resurrecting treatment histories of dead patients. , 2005, JAMA.

[48]  D. Clark,et al.  Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals , 2004, Palliative medicine.

[49]  I. Higginson,et al.  Better palliative care for older people , 2004 .

[50]  R. McDaniel,et al.  Nursing Homes as Complex Adaptive Systems: Relationship Between Management Practice and Resident Outcomes , 2003, Nursing research.