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Editorial Board AUSTRALIA Donna Drew Clinical Nurse Consultant, Paediatric Oncology/Palliative Care, Kids Cancer Centre, Sydney Children’s Hospital

Bridget Johnston Professor of Palliative and Supportive Care, Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, University of Nottingham

Jane Phillips Professor Palliative Nursing, Director of the Centre for Cardiovascular and Chronic Care, Faculty of Health, University of Technology, Sydney

Daniel Kelly RCN Chair of Nursing Research, School of Healthcare Sciences, Cardiff University

BELARUS Anna Garcakova Director of the Belarusian Children’s Hospice BELGIUM Tine De Vlieger General Coordinator, Palliatieve Hulpverlening Antwerpen, University of Antwerp EIRE Philip Larkin Professor of Clinical Nursing (Palliative Care), School of Nursing, Midwifery and Health Systems and Our Lady’s Hospice Ltd, Health Sciences Centre, University College Dublin, Ireland Julie Ling CEO of the European Association for Palliative Care, Our Lady’s Hospice, Dublin NORTHERN IRELAND Sonja McIlfatrick Reader, Institute of Nursing Research, University of Ulster; Head of Research, All Ireland Institute of Hospice & Palliative Care UGANDA Julia Downing Honorary Professor in Palliative Care, Makerere University, Kampala UNITED KINGDOM John Costello Senior Lecturer, University of Manchester

Diane Laverty Nurse Consultant in Palliative Care, St Joseph’s Hospice, London Carole Mula Macmillan Nurse Consultant in Palliative Care and Professional Lead Nurse for Division of Clinical Support Services, The Christe NHS Foundation Trust, Manchester Brian Nyatanga Senior Lecturer, University of Worcester Julie Skilbeck Senior Lecturer, Sheffield Hallam University Dion Smyth Lecturer-practitioner in Cancer and Palliative Care, Birmingham City University Anna-Marie Stevens Macmillan Nurse Consultant Cancer Palliative Care, The Royal Marsden NHS Foundation Trust, London UNITED STATES Jennifer Baird Harvard-wide Pediatric Health Services Research Fellow, Division of Medicine Critical Care, Department of Medicine, Boston Children’s Hospital Patricia Berry Professor, Director, Hartford Center of Gerontological Nursing Excellence at OHSU, School of Nursing, Oregon Health and Science University

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International Journal of Palliative Nursing is indexed on Medline, www.markallengroup.com CINAHL, and the British Nursing Index International Journaldo ofnot Palliative Nursing is indexed The views expressed necessarily represent those of the editor or on Medline, CINAHL, the BritishNursing. NursingAdvertisements Index the International Journaland of Palliative in the © MA Healthcare Ltd, 2014. All rights reserved. journal do not imply endorsement of the products or services advertised. No part of the International Journal of Palliative Nursing may be © MA Healthcare Allsystem, rights reserved. reproduced, storedLtd, in a 2015. retrieval or transmitted in any form No part the International Journal of Palliative Nursing may be or or by anyofmeans electronic, mechanical, photocopying, recording, reproduced, stored prior in a retrieval system, or transmitted in anyDirector. form otherwise without written permission of the Publishing or by any means electronic, mechanical, photocopying, recording, or ISSN 1357-6321 ISSN 1357-6321 Printed by Pensord Press Ltd, Blackwood, Gwent NP12 2YA Printed by Pensord Press Ltd, Blackwood, Gwent NP12 2YA The paper used within this publication has been sourced from Chain-of-Custody certified manufacturers, operating within international environmental standards, to ensure sustainable sourcing of the raw materials, sustainable production and to minimise our carbon footprint.

International Journal of Palliative Nursing 2015, Vol 21, No 3

Editorial

Hospice and palliative care: differences matter

I

’ve been thinking a lot lately about the differences between hospice and palliative care in the US and the inevitable tension that naturally comes with these differences, whether they are borne out of real or perceived differences in power, status, race, ethnicity, or those that we create ourselves. Hospice care in the US originated from the UK, when Florence Wald, the Dean of Yale University College of Nursing invited Dame Cicely Saunders as a visiting professor in 1966. Dr Wald subsequently resigned from her position at Yale to devote herself full-time to the hospice movement in the US, and the Connecticut Hospice (the first in the US) was founded in 1974. In an attempt to assure that hospice care became an ‘accepted’ part of our health-care system, it became a benefit of Medicare—the US insurance coverage for people over the age of 65 and those with certain chronic conditions—in 1982. As the HIV/AIDS epidemic reached its peak, and with a fair amount of liberal and conservative politicking, hospice care became a benefit of Medicaid—the US insurance coverage for the poor, a Federal programme administered by each individual state­—in the mid 1990s. Hospice care in the US, like it or not, is defined by Medicare (in fact Medicare-certified hospices have to provide the same level of care to patients regardless of ability to pay) and is delivered largely in the patient’s home, nursing home or assisted-living facility. Medicare mandates a limit to the amount of inpatient care a hospice can deliver; the vast majority of programmes never get close to the limit. The goal is the keep patients out of the hospital. Hospice programmes require a prognostic estimate of 6 months or less (should the disease run its usual course) and for patients to forego treatment aimed at prolonging life. In the US, hospice care has become a business-like affair; balancing its per diem reimbursement model with patient acuity, medication costs, staff salaries and productivity. There are many national for-profit companies owned by investors that spend millions of dollars a year on advertising and outreach to potential referral sources. And due to state budget cuts, hospice programmes, which are licensed and certified for Medicare and Medicaid by the states, go years and years without an onsite visit. This causes the quality of hospice programmes to be, at best, widely variable, making the saying ‘once you’ve seen one hospice, you’ve seen one hospice’, sadly true. Palliative care came to the US from Canada and, again, the UK. While there are exceptions, palliative care is delivered in the hospital with an interdisciplinary team, usually led by a physician certified in palliative care. Palliative care has adopted the hospice philosophy but is not bound by rules about prognosis. Palliative care teams function as a consultation service in the hospital, allowing the physicians and nurse practitioners to bill for their services under a different mechanism than hospice care. Palliative care programmes contribute to the US health-care system by cost avoidance and clarifying the goals of care, in other words, not limiting care, but assuring the care provided is inkeeping with patient preferences and the ever-growing evidence-base. Thus, the tension between hospice and palliative care. Should care be limited to the 6-month prognosis or be initiatied early in the course of a life-limiting illness at diagnosis? Should nurses or physicians lead? Who should be leading the advance care planning movement? Is hospice care a part of palliative care or is palliative care a part of hospice care? Is palliative care the same as end-of-life care? The questions and rhetoric continue. So, does all of this matter? It does in the US, where so much of what we do is linked with reimbursement and being profitable or at least cost-neutral. Is there as much confusion about the differences and similarities between hospice and palliative care around the world? I say, let’s embrace our differences and learn from each other.

Patricia Berry Professor, Director, Hartford Center of Gerontological Nursing Excellence at OHSU, School of Nursing, Oregon Health and Science University, US

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