Palliative home care for cancer patients in Denmark - with a particular focus on the primary care sector, GPs and community nurses

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1 FACULTY OF HEALTH SCIENCES AARHUS UNIVERSITY Palliative home care for cancer patients in Denmark - with a particular focus on the primary care sector, GPs and community nurses PhD Thesis Mette Asbjørn Neergaard Faculty of Health Sciences Aarhus University 2009

2 Palliative home care for cancer patients in Denmark - with a particular focus on the primary care sector, GPs and community nurses PhD thesis Mette Asbjørn Neergaard In memory of my late husband Poul Raben Jensen ( ) Research Unit and Department of General Practice Faculty of Health Sciences Aarhus University

3 PhD thesis Palliative home care for cancer patients in Denmark - with a particular focus on the primary care sector, GPs and community nurses Mette Asbjørn Neergaard, MD, GP This thesis has been accepted for PhD defence by the Faculty of Health Sciences, Aarhus University and was defended on 29 th May Supervisors: Professor, Dr.Med.Sci., Frede Olesen, Research Director of The Research Unit for General Practice, University of Aarhus Professor, PhD, Jens Søndergaard, The Research Unit for General Practice, University of Southern Denmark PhD, Consultant, Anders Bonde Jensen, Department of Oncology, Aarhus University Hospital Opponents: Associate professor, PhD, Dr.Med.Sci., Mogens Grønvold, Health Services Research Unit, Department of Public Health, University of Copenhagen Professor, Dr.Med.Sci., Marianne Ewertz Kvistgaard, Department of Oncology, Odense University Hospital Professor, PhD, Bo Christensen, Department of General Practice, School of Public Health, University of Aarhus (chairman) Print: Fællestrykkeriet for Sundhedsvidenskab, Aarhus University ISBN: Address: The Research Unit for General Practice University of Aarhus Bartholins Allé 2 DK-8000 Aarhus C

4 Preface PREFACE I

5 Preface Outline of this thesis: This thesis is based on the project: Palliative home care for cancer patients in Denmark - with a particular focus on the present and future role of general practice a mixed method study conducted in the period in the former Aarhus County, Denmark. The project emanated from the Research Unit and Department for General Practice, Aarhus University. The definitions of issues concerning this thesis are introduced in Chapter 1. A general introduction to the subject is given in Chapter 2 and the aims of the projects are outlined in Chapter 3. Chapter 4 offers a description of material and methods. The five papers are presented in Chapters 5 to 9. In Chapters 10 and 11 a more general discussion of the methods and results are given and Chapters 12 to 14 gather the conclusions pertaining to the aims of the project and raise perspectives and offer suggestions for future research. Finally, Chapters 15 to 17 give English and Danish summaries and a full reference list of the thesis. The Appendices include interview guides, cover letters and questionnaires. The PhD study was funded by the Aarhus County Research Fund for the Clinical Development and Research in General Practice and across the Primary and Secondary Health Care Sectors ( ), the Danish National Research Foundation for Primary Care ( ) and The Multipractice Study Committee (585-04/2072). II

6 Preface This PhD thesis is based on the following five papers: 1. Neergaard MA, Olesen F, Jensen AB, Sondergaard J. Palliative care for cancer patients in a primary health care setting: Bereaved relatives' experience, a qualitative group interview study. BMC Palliat Care 2008;7:1 2. Neergaard MA, Olesen F, Jensen AB, Sondergaard J. Shared care in basic level palliative home care Organisational and interpersonal challenges. Submitted to Family Practice 3. Neergaard MA, Vedsted P, Olesen F, Sokolowski I, Jensen AB, Sondergaard J Associations between home death and general practitioner involvement in palliative care. Submitted to British Journal of General Practice 4. Neergaard MA, Vedsted P, Olesen F, Sokolowski I, Jensen AB, Sondergaard J Associations between successful palliative cancer pathways and general practitioner involvement. Submitted to Scandinavian Journal of Primary Health Care 5. Neergaard MA, Vedsted P, Olesen F, Sokolowski I, Jensen AB, Sondergaard J Associations between successful palliative cancer pathways and community nurse involvement. Submitted to BMC Palliative Care III

7 Preface Motivation My interest in palliation began when my then beloved husband died of cancer in Working for the general practitioners Carl Erik Mabeck and Henrik Læssøe, Højbjerg in 1998, I was entrusted with the task of providing palliative care, for which I am very grateful to patients, relatives and my colleagues. Afterwards, I was lucky to work at the Department of Oncology at Aarhus University Hospital where I soon discovered that my main interest lay with terminally ill patients and their families. Thus, in the final phase of my studies to become a general practitioner in 2003, I contacted my colleague, Marianne Bjerager, who at the time was a PhD-student at the Research Unit for General Practice in Aarhus, and she incited me to contact Frede Olesen, professor, GP and director of the Research Unit for General Practice in Aarhus. Fortunately, Frede supported my idea of a research project on palliative and primary care and I started at the Research Unit in August Acknowledgements Throughout my employment at The Research Unit for General Practice in Aarhus, I have had a feeling of being at home. Frede Olesen s trust in me and my abilities is priceless and I am deeply grateful to have had the opportunity to work with him and under his wings. Likewise, my two other supervisors Jens Søndergaard and Anders Bonde Jensen have provided immeasurable supports throughout the whole period. Furthermore, I would like to thank Peter Vedsted for his help with the quantitative articles, and his never failing sense of perspective in every research issue. My special, deep-felt thanks go to the participating bereaved relatives, community nurses, hospital consultants and GPs, who all played an irreplaceable role in the study. I also owe thanks to the Palliative Care team and community nurses in Aarhus for locating potential relatives to participate in the interviews. I also wish to thank the administrative and technical staff of the Research Unit, Birthe Brauneiser, Eva Højmark, Hanne Beyer, Lars Olesen and Eva Munkholm for their patience and involvement. Furthermore, I wish to thank Eva Højmark, Morten Pilegaard, Ellen Asbjørn Jensen and Kim Neergaard for revising my manuscripts, Lone Brøcker, Elsebeth S. Christensen and Pia Høj Christiansen for transcribing interviews and Josefine, Natasja and Maja for packing, scanning and verifying the questionnaires. I am very grateful to my office-mates, Ineta Sokolowski, Kaj S. Christensen and Marianne Rosendal for providing a pleasant office environment with fruitful discussions. Particular thanks are extended to Ineta for her friendship and help with statistics. I also owe special thanks to Rikke Pilegaard Hansen and Marianne Bjerager who were a great help, when I first started at the Research Unit. Since Trine Brogaard and Mai-Britt Guldin started at the Research unit, I have not been alone with my passion for palliative care and I thank them for being soul mates on this and a lot of other issues. I wish to thank Rikke Sand Andersen for rewarding discussions about qualitative research methods and my very good and old friend at 1 st floor, Bodil Hammer Beck for always being there for me. There is no doubt that my colleagues in building 1260 are the best one can imagine and they all contributed to make my PhD period a wonderful journey. The greatest thank of all goes to my family: My parents, my brothers, their families and my familyin-law have always been a tremendous support. With all my heart I thank my girls, The Fantastic Four, Vilma, Karla, Josefine and Aja, my sons-in-law Emil and Lau and my two wonderful grandchildren Sille and Otto for bringing much happiness, laughter and a whole lot of meaning into my life. Lastly my ultimate deep-felt appreciation goes to Kim Neergaard, my wonderful husband, for love and care and his never failing trust in my abilities. Mette Asbjørn Neergaard, Aarhus 2009 IV

8 Preface Abbreviations and acronyms CI Confidence interval CN Community nurse FGI Focus group interview FO Frede Olesen GP General practitioner HDR The county hospital discharge registry IQI Inter quartile interval JS Jens Søndergaard MAN Mette Asbjørn Neergaard PR Prevalence ratio RCD The Danish Register of Causes of Death SD Standard deviation SWOT Strengths, weaknesses, opportunities and threats OR Odds ratio QD Qualitative description WHO The World Health Organisation V

9 How people die remains in the memories of those who live on Dame Cicely Saunders

10 Contents Contents 1. Definitions Palliative care 1.2. Basic and specialist palliative care level 1.3. The palliative period 1.4. Patients in need of palliative care 1.5. Families in palliative care 1.6. Palliative home care 1.7. Shared care 1.8. References of Chapter 1 2. General introduction General introduction 2.2. Introduction at a glance 2.3. References of Chapter 2 3. Aims The overall aim of the thesis Research question A Research question B 3.2. The aims of the five studies Aim Aim Aim Aim Aim 5 4. Materials and methods Setting 4.2. Methods Focus group interviews Identifying informants The interviews Analysis of the qualitative studies Quantitative surveys The questionnaires Pilot testing Study population and sampling Data collection Data entry Analysis of the quantitative studies 4.3. Economic incentives 4.4. Approvals 4.5. References of Chapter 4 1

11 Contents 5. Paper Palliative care for cancer patients in a primary health care setting - Bereaved relatives' experience. A qualitative group interview study 5.1. Abstract 5.2. Background 5.3. Methods 5.4. Results 5.5. Discussion 5.6. Conclusion 5.7. Tables 5.8. References of Chapter 5 6. Paper Shared care in basic level palliative home care - organizational and interpersonal challenges 6.1 Abstract 6.2. Introduction 6.3. Material and method 6.4. Results 6.5. Discussion 6.6. Conclusion 6.7. Tables 6.8. References of Chapter 6 7. Paper Associations between home death and general practitioner involvement in palliative care 7.1. Abstract 7.2. Introduction 7.3. Materials and methods 7.4. Results 7.5. Discussion 7.6. Conclusion 7.7. Tables 7.8. References of Chapter 7 8. Paper Associations between successful palliative cancer pathways and general practitioner involvement 8.1. Abstract 8.2. Introduction 8.3. Materials and methods 8.4. Results 8.5. Discussion 8.6. Conclusion 8.7. Tables 8.8. References of Chapter 8 2

12 Contents 9. Paper Associations between successful palliative cancer pathways and community nurse involvement 9.1. Abstract 9.2. Introduction 9.3. Method 9.4. Results 9.5. Discussion 9.6. Conclusion 9.7. Tables 9.8. References of Chapter Discussion of methods Mixed methods design Choice of informants / participants Qualitative study The focus group interviews Selection of informants Analysis Validity Credibility Dependability and conformability Transferability Quantitative surveys Study design Questionnaires Variables in the models Response rates Internal validity Data from registers Sampling errors Selection bias because of non-responding GPs Selection bias because of non-responding CNs Selection bias because of non-responding relatives Selection bias because of relatives excluded by GPs or CNs Social desirability bias (Information bias) Recall bias (Information bias) Confounding Generalisability Ethical considerations References of Chapter General discussion of results Quality of care at the end of life Relatives versus patients evaluation Discussion of main results from Papers Research question A Research question B References of Chapter 11 3

13 Contents 12. Conclusion Thesis Conclusion in relation to the overall aim of the thesis Conclusion in relation to aim Conclusion in relation to aim Conclusion in relation to aim Conclusion in relation to aim Conclusion in relation to aim Conclusion of thesis 13. Perspectives and implication for health care Future research English summery Danish summery References listed alphabetically by author Appendices A: Interview guide, final, relatives (in Danish) B: Interview guide, final, GPs (in Danish) C: Interview guide, final, mixed professionals (in Danish) D: Interview guide, final, Community nurses (in Danish) E: Topic guide themes in interviews with professionals F: Scales and questionnaires developed for relatives in palliative care, incl. reference list G: Themes in questionnaires H: Variables with data retried from official registers (Papers 3 5) I: Variables from questionnaires with coherent questions (Papers 3 5) J: Cover letter, GPs (in Danish) K: Questionnaire, GP (in Danish) L: Cover letter, Community nurses (in Danish) M: Questionnaire, Community nurses (in Danish) N: Cover letter, Relatives (in Danish) O: Questionnaire, Relatives (in Danish) 4

14 Chapter 1. Definitions CHAPTER 1 DEFINITIONS 5

15 Chapter 1. Definitions 1.1. Palliative Care The World Health Organisation (WHO) defines palliative care as follows: Palliative care improves the quality of life of patients and families who face life-threatening illness, by providing pain and symptom relief, spiritual and psychosocial support from diagnosis to the end of life and bereavement. Palliative Care: provides relief from pain and other distressing symptoms; affirms life and regards dying as a normal process; intends neither to hasten or postpone death; integrates the psychological and spiritual aspects of patient care; offers a support system to help patients live as actively as possible until death; offers a support system to help the family cope during the patient s illness and in their own bereavement; uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; will enhance quality of life, and may also positively influence the pathway of illness; is applicable early in the pathway of illness, in conjunction with other therapies that are intended to prolong life, e.g. chemotherapy or radiation therapy, and includes investigations needed to better understand and manage distressing clinical complications (1) 1.2. Basic and specialist palliative care level Palliative care is ideally divided into a basic level and a specialized level. The Danish Health Authorities have defined the basic palliative care level as follows: The palliative effort at basic level concerns the effort at general hospital wards and in the patients homes. The effort at the hospitals is performed by the hospital staff and in the patients homes by the general practitioner (GP) and home care services. The specialist palliative care level is defined as follows: The palliative effort at specialist level concerns the patient who has a complex symptomatology and who demands a specialised and / or a inter-professional effort, including support for psychosocial and existential problems... The tasks of the palliative specialist care teams are, in collaboration with the GP and the community nurse, to improve the patient s ability to stay at home during the palliative period, to die at home and to avoid unnecessary admittances to hospitals (2). 6

16 Chapter 1. Definitions 1.3. The palliative period The palliative period is very difficult to define in terms of a precise time frame. It covers the time period from the decision is made to discontinue all curatively intended treatment until death. The time span varies from diagnosis to diagnosis, from stage to stage of the disease at time of diagnosis and from individual to individual. Defining the palliative period is further complicated by the fact that many groups of cancer patients receive life-prolonging treatments (e.g. chemotherapy and hormonal therapy), just like palliative treatment, to a far greater extent now than previously Patients in need of palliative care According to the WHO, all patients with a life-limiting disease are potential recipients of palliative care (1). The number of patients in Denmark who receive palliative care is not known, but the majority of patients in need of palliative care are cancer patients, and patients died from cancer in Denmark in 2006 (3). The majority of these patients probably needed palliative care (4). Terminally ill non-cancer patients, e.g. patients with terminal heart failure, terminal chronic obstructive lung disease, terminal neurological diseases and HIV, are just as important in palliative care. However, so far these patients account for only a small fraction of patients in palliative care in Denmark Families in palliative care As it appears from the WHO definition of palliative care, the families are in focus as well as the patients (1). Relatives seem to cope better with bereavement after a loved one's death if sufficient support is provided during the palliative stage of disease at home (5-7). The close relative is in a dual position being both an important participant in palliative home care and a person who is suffering from the coming loss of a loved relative. Relatives want to be involved in the care, especially if sufficient support is provided by the professionals (8). In this thesis, the relative is referred to as the closest relative, meaning the family member or friend who is closest to the patient in the palliative phase Palliative home care Palliative home care includes all palliative care services performed in the patients homes. For patients living in a nursing home, this is seen as their homes. In this thesis, the palliative care effort performed at nursing homes is therefore included in palliative home care. 7

17 Chapter 1. Definitions 1.7. Shared care Since patients in palliative home care are often both in contact with GPs, CNs, hospital consultants, and sometimes also with a palliative specialist team, the cooperation between these professionals is important. Shared care may be an approach to organise this collaboration: Pritchard and Hughes have defined shared care as follows:... the responsibility for the health care of the patient is shared between individuals or teams who are part of separate organizations or where substantial organizational boundaries exist (9) Hickman has a more narrow definition:... the joint participation of general practitioners and hospital consultants in the planned delivery of care for patients with a chronic condition, informed by an enhanced information exchange over and above routine discharge and referral letters (10) 8

18 Chapter 1. Definitions 1.8. References of Chapter 1 (1) World Health Organization. Pain relief and palliative care. National cancer control programmes, policies and managerial guidelines. 2nd ed. ed. Geneva: p (2) The National Board of Health. National Cancer Plan II Denmark National Board of Health recommendations for improving cancer healthcare services. Copenhagen: The National Board of Health; (3) The Danish National Board of Health. The Danish Register of Causes of Death [In Danish] (4) Lidstone V, Butters E, Seed PT, Sinnott C, Beynon T, Richards M. Symptoms and concerns amongst cancer outpatients: identifying the need for specialist palliative care. Palliat Med 2003 Oct;17(7): (5) Grande GE, Farquhar MC, Barclay SI, Todd CJ. Valued aspects of primary palliative care: content analysis of bereaved carers' descriptions. Br J Gen Pract 2004 Oct;54(507): (6) Jansma FF, Schure LM, de Jong BM. Support requirements for caregivers of patients with palliative cancer. Patient Educ Couns 2005 Aug;58(2): (7) Milberg A, Strang P. What to do when 'there is nothing more to do'? A study within a salutogenic framework of family members' experience of palliative home care staff. Psychooncology 2007 Aug;16(8): (8) Weibull A, Olesen F, Neergaard MA. Caregivers' active role in palliative home care - to encourage or to dissuade? A qualitative descriptive study. BMC Palliat Care 2008 Sep 16;7(1):15. (9) Pritchard P, Hughes J. Shared Care The Future Imperative? 1.ed. ed. London: Royal Society of Medicine Press; (10) Hickman M, Drummond N, Grimshaw J. A taxonomy of shared care for chronic disease. J Public Health Med 1994;16(4):

19 10

20 Chapter 2. General introduction CHAPTER 2 GENERAL INTRODUCTION 11

21 Chapter 2. General introduction 2.1. General introduction Approximately persons die each year in Denmark (1) and between one third and one fourth of them die from cancer. Hence, persons died from cancer in Denmark in International studies from countries that Denmark is normally compared with, show that most patients and their relatives wish terminal care and death to take place at home (2-6), but no data yet exists detailing where Danish cancer patients wish to die. The place of death is reported in the Danish Register of Causes of Death (RCD) and Table 2.1 shows the place of death for Danish cancer patients in the years It is seen that these years have seen little change in the distribution of places of death (1). Approximately half of all cancer patients die at hospitals, about one fourth die at nursing homes and one fourth die at home. Table Percentage distribution s of cancer deaths divided by place of death in (1) Place of death (%) Hospital * * * 55.1 Nursing home and hospice** * * * 17.9 Home * * * 25.8 Other place * * * 0.8 Not registered * * * 0.5 In total * * * * These numbers are not yet available from The Danish national Board of Health who administers the Danish Register of Causes of Death ** In deaths at hospices were registered as deaths at nursing homes. Hence, there seems to be a mismatch between cancer patients wish for and their actual place of death. One has to keep in mind that for a huge part of those cancer patients who died at nursing homes, they also died at home, since they lived at a nursing home even before the palliative period. However, some of the nursing home deaths are deaths of patients who were admitted to the nursing home in the palliative period and represent a kind of institutional death. We have, however, no possibility to separate between these two types of nursing home deaths in RCD, but in both groups the doctor involved is the patient s own GP. Furthermore, the data does not allow us to separate between the place of care and place of death in the palliative period which is also an important information (7). 12

22 Chapter 2. General introduction Since palliative care is often needed during the period just before death of a cancer patient (8), the services provided in this period is crucial in achieving home death, and maybe more importantly, in achieving a good palliative pathway. In this thesis, we define the palliative period as the last period of the patients life where all curative and life prolonging treatments are stopped and the care and treatment are merely palliative. In caring for dying cancer patients, one has to remember that, on the one hand, they form a homogenous group because they share a course of disease that progresses through phases of diagnosis, curative treatment, realisation of incurability and a palliative pathway; yet on the other hand, they are also heterogeneous in terms of symptoms, socioeconomic relations and health professional involvement. Both patient and relatives therefore need individual support during the palliative pathway. Since the palliative effort comprises both pain symptom relief, spiritual and psychosocial issues (9), the effort should be team-based and interdisciplinary (10;11). Dying patients and their relatives request symptom control, access to appropriate care, availability of professionals, time to listen and continuity in their contact with the health care system (12-16). The wish for continuity may be particularly strong in palliative care where patients are in contact with an array of health providers during a period (17), where they are in dire need of peace and safety (14;16). Both relational and informational continuity in palliative pathways seem important to terminally ill patients (16). Hence, it can be seen from above that high quality of care in the palliative pathway demands that the professionals involved exercise flexibility, tailor the care to the needs of the individual patients and relatives, and commit themselves to cooperation in a team, provide symptom control, availability and continuity. The palliative care effort in Denmark is officially organised at a basic and a specialist palliative care level (see Chapter 1 for definitions) (11). Some patients require specialist palliative care because they suffer from severe symptoms or have serious problems of a physical, psychological, emotional or spiritual nature. However, most patients are taken well care of at the basic palliative care level, where GPs, CNs and home care services provide primary professional palliative care services in the patients homes. In Denmark there is no central registration of palliative pathways and nobody knows how the task distribution between the two levels of palliative care actually is. Furthermore, there is no official guideline on how to organise the palliative care effort nationally like in other surrounding countries, e.g The United Kingdom (18). In Denmark only recommendations 13

23 Chapter 2. General introduction have been given (11). The present organisation of palliative care in Denmark has therefore evolved locally and it essentially rests not on evidence but on especially interested professionals views and traditions, political trends and goodwill in the different areas of the country. As mentioned above, the primary health care team, e.g. the GPs and CNs, is often involved in the palliative pathway when the terminally ill patient stays at home. The GPs and CNs are frontline workers in the patients homes - sometimes in cooperation with a palliative specialist team. Many GPs consider palliative care to be typical GP work and one of the more rewarding parts of the job (19-25). The traditions and values of general medicine corroborate the intentions of palliative care (9;26), e.g. in seeking a continuing relationship between patient, family and professionals, the continuity of care (27) and the ability to perform care in co-operation with other health professionals (28). The Danish authorities recommend that the GP has a central, coordinating role (29). It has been postulated that the low percentage distribution of home deaths may be rooted in poor delivery of primary healthcare (4). Thus, earlier studies identified considerable dissatisfaction with symptom control in a primary care setting (5;30-32); however, satisfaction with the GP was still rated high (5) and relatives valued the involvement of GPs and CNs (33). Furthermore, research has shown that involvement of GPs or CNs is positively associated with home death (34-39). All in all, it suggests that good palliative care amounts to more than simply a certain degree of symptom control. However, GPs and CNs do not necessarily act like a multidisciplinary team in palliative care. GPs and CNs have been found to appreciate each others efforts in palliative care (40), but barriers to co-operation have also been found: e.g. CNs criticised GPs for involving them too late and some were critical of GPs knowledge of pain treatment (40;41). Likewise, GPs regarded CNs so overstretched that they tended to defer involving them and felt that too many different CNs were involved in each case (40). GPs and CNs have also pointed out that co-operation with the secondary health care system did not always work and that shortfalls included e.g. inadequate information handover (40;42), lack of shared decision-making (43) and lack of available specialists in palliative care (21;44). It seems that barriers to successful co-operation or shared care in palliative care exist both within the primary healthcare sector and across sectoral borders. 14

24 Chapter 2. General introduction To sum up, the present organisation of palliative care does not support home death to the extent requested by patients and relatives even if specialist palliative care team have sprung up in many major cities in Denmark over the past decade. The problem may lie in poor delivery of primary healthcare, but may also be due to the working conditions of the primary healthcare professionals, which do not adequately support co-operation with the secondary health care system. Hence, knowledge of how the palliative home care ideally is best organised is inadequate and more insight into the quality of the palliative effort in completed palliative pathways in the primary care sector is required. The patients and relatives are recipients of palliative care and their experiences, wishes and suggestions for improvement are pivotal to efforts at improving the entire palliative effort in the primary care health sector. Furthermore, the views of the professionals involved are important to determine facilitators and barriers to achieving a good palliative pathway and home death. To conclude, knowledge is needed of patients, bereaved relatives, GPs, CNs and other health care professionals experiences, wishes and suggestions on how to improve the entire palliative effort in the primary care health sector. Particularly important is to obtain knowledge about the primary health care sector s effort in respect of palliative care and how the primary and the secondary health care sectors cooperate in palliative care Introduction at a glance About one fourth of all cancer deaths in Denmark occur in the patients homes and added to this is the deaths that occur in nursery homes often cared for by the GPs Most patients and their relatives wish terminal care and death to take place at home GPs and CNs are frontline workers in the patients homes in the palliative pathway Palliative care demands flexibility, cooperation, symptom control, availability and continuity from the professionals involved The present organisation of palliative care does not succeed in achieving homedeath of patients to the extent it is requested by patients and relatives There is a need for a deeper insight into experiences, barriers and facilitators of good palliative home care, especially in relation to primary health care 15

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