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The Incurable Cancer Patient at the End of Life

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The Incurable Cancer Patient at the End of Life Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine 1013 _____________________________ _____________________________ The Incurable Cancer Patient at the End of Life Medical Care Utilization, Quality of Life and the Additive Analgesic Effect of Paracetamol in Concurrent Morphine Therapy BY BERTIL AXELSSON ACTA UNIVERSITATIS UPSALIENSIS UPPSALA 2001 Dissertation for the Degree of Doctor of Philosophy (Faculty of Medicine) in General Surgery, presented at Uppsala University in 2001 ABSTRACT Axelsson, B. 2001. The incurable cancer patient at the end of life. Medical care utilization, quality of life and the additive analgesic effect of paracetamol in concurrent morphine therapy. Acta Universitatis Upsaliensis. Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine 1013. 88 pp. Uppsala. ISBN 91-554-4968-9. Optimal quality of life and health care utilization are objectives of all palliative services. The aim of this study was to present background data on health care utilization and quality of life, explore potential outcome variables of health care utilization, evaluate a hospital-based palliative support service, provide a quality of life tool specially designed for incurable patients at the end of life and to establish whether paracetamol has an additive analgesic effect to morphine. Only 12% of the patients died at home. When the period between diagnosis and death was less than one month, every patient died in an institution. Younger patients, married patients, and those living within a 40 km radius of the hospital utilized more hospital days. The "length of terminal hospitalization" and the "proportion of days at home/total inclusion days" seemed to be feasible outcome variables when evaluating a palliative support service. The hospital- based palliative support service in this study defrayed its own costs thanks to a median saving of 10 hospital days/patient, compared with matched historical controls. A 19-item quality of life questionnaire (AQEL) was developed which evidenced good signs of reliability and validity. The item most closely correlated to global quality of life was the sense of meaningfulness. This was true for both patients and their spouses. Patients´ levels of pain and anxiety did not increase at the end of life. In this study we could not find any convincing evidence of an additive analgesic effect of paracetamol in morphine therapy of pain in cancer patients. Keywords: palliative, cancer, place of death, health care utilization, quality of life, morphine, paracetamol, pain Bertil Axelsson, Department of General Surgery, Östersund Hospital, SE-831 83 Östersund, Sweden. © Bertil Axelsson 2001 ISSN 0282-7476 ISBN 91-554-4968-9 Printed in Sweden by Uppsala University, Tryck & Medier, Uppsala 2001 Look to this day, for it is life, the very life of life. In its brief course lie all the realities and verities of existence, the bliss of growth, the splendour of action, the glory of power. For yesterday is but a dream, and tomorrow is only a vision. But today, well lived, makes every yesterday a dream of happiness and every tomorrow a vision of hope. Look well, therefore, to this day. Sanskrit proverb ABBREVIATIONS AQEL Assessment of Quality of life at the End of Life CIPS Cancer Inventory of Problem Situations DGS Department of General Surgery, Östersund EORTC European Organization for Research and Treatment of Cancer GP General Practitioner KPS Karnofsky Performance Score NH– Health care centre without a nursing home attached NH+ Health care centre with a nursing home attached NRS Numerical Rating Scale PSS Palliative Support Service QUALY Quality Adjusted Life Year QoL Quality of Life RT Radiotherapy S.D. Standard Deviation Sw.kr Swedish kronor U.S. United States VAS Visual Analogue Scale WHO World Health Organization 5 CONTENTS ABSTRACT .......................................................................................... 3 ABBREVIATIONS ............................................................................... 4 LIST OF PAPERS ................................................................................. 6 INTRODUCTION ................................................................................. 7 Palliative support ...................................................................... 9 Evaluation .................................................................................. 10 Economic evaluation ................................................................ 11 Quality of life of patients with incurable cancer .................. 15 Quality of life measurement .................................................... 17 Quality of life instruments ...................................................... 18 Paracetamol ............................................................................... 20 THE AIMS OF THE STUDY............................................................... 22 MATERIAL AND METHODS .......................................................... 24 Geographical characteristics .................................................. 24 Patients ...................................................................................... 24 Statistics .................................................................................... 28 RESULTS AND COMMENTS ........................................................... 29 Paper I ........................................................................................ 29 Paper II ....................................................................................... 33 Paper III ..................................................................................... 39 Paper IV ..................................................................................... 44 Patient QoL questionnaire ......................................... 44 Paper V ...................................................................................... 51 Spouse QoL questionnaire ........................................ 57 Paper VI ..................................................................................... 59 GENERAL DISCUSSION ................................................................... 62 SUMMARY.......................................................................................... 74 SUMMARY IN SWEDISH ................................................................ 75 ACKNOWLEDGEMENTS ................................................................ 79 REFERENCES ...................................................................................... 81 6 This thesis is based on the following papers which will be referred to by their Roman numerals: I Place of death correlated to socio-demographic factors A study of 203 patients dying of cancer in a rural Swedish county in 1990 Bertil Axelsson & Svend Borup Christensen Palliative Medicine 1996; 10: 336-38. II Medical care utilization by incurable cancer patients in a Swedish county Bertil Axelsson & Svend Borup Christensen European Journal of Surgical Oncology 1997; 23: 145-50. III Evaluation of a hospital-based palliative support service with special reference to financial outcome measures Bertil Axelsson & Svend Borup Christensen Palliative Medicine 1998; 12: 41-49. IV Assessment of quality of life in palliative care Psychometric properties of a brief questionnaire Bertil Axelsson & Per-Olow Sjödén Acta Oncologica 1999; 38: 229-37. V Quality of life of cancer patients and their spouses in palliative home care Bertil Axelsson & Per-Olow Sjödén Palliative Medicine 1998; 12: 29-39. VI The additive analgesic effect of paracetamol in morphine therapy of pain in cancer patients - A double-blind randomized study Bertil Axelsson & Svend Borup Christensen Submitted to Palliative Medicine Reprints were made with the kind permission of the publishers. 7 INTRODUCTION Death is an inevitable part of all life. Mortality has always been, and will always be, 100%. Once in every life, the time comes for dying and death. We do not know when or how, but we all know that one day it will be our turn to leave this life. Care of the dying, sooner or later, concerns us all. Care of the dying is an unceasing responsibility for the medical profession and for society at large. Daniel Callahan (1) states that "no moral impulse seems more deeply embedded than the need to relieve suffering ...... It has become a foundation stone for the practice of medicine, and it is at the core of the social and welfare programs of all civilized nations". For a couple of decades during the 20th century (1950-70), when medical progress astonished everyone, one almost got the impression that very soon the day of total cure would arrive. Historically, doctors have never been able to do much more than palliate and comfort. This aspect of medicine was almost neglected during an optimistic era of newly introduced antibiotics, vaccines, chemotherapy, and transplantations. Every disease could be cured, if not today, then probably tomorrow. This line of thought seemed to be unconsciously extended to: "Without diseases there may be no death and dying". In striving for immortality, increasing funds were allocated to medical care and modern hospitals were erected all over Sweden. A feeling of "a right to be cured" grew and those not cured were very reluctant to be discharged from hospital. Many a death was regarded as a failure. Hardly anyone died outside of an institution. Knowledge of how to care properly for the dying was almost forgotten. Advances in the science of medicine appeared to lead to a
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