Palliative Care in Norway: A National Public Health Model

Transcription

1 Vol. 33 No. 5 May 2007 Journal of Pain and Symptom Management 599 Special Article Palliative Care in Norway: A National Public Health Model Stein Kaasa, MD, PhD, Marit S. Jordhøy, MD, PhD, and Dagny Faksvåg Haugen, MD, PhD Palliative Medicine Unit (S.K.), Department of Oncology, St. Olavs Hospital, Trondheim; Department of Cancer Research and Molecular Medicine (S.K., M.S.J., D.F.H.), Faculty of Medicine, Norwegian University of Science and Technology (NTNU), Trondheim; Palliative Medicine Unit (M.S.J.), Department of Oncology, Ullevål University Hospital, Oslo; and Regional Center of Excellence for Palliative Care, Western Norway (D.F.H.), Haukeland University Hospital, Bergen, Norway Abstract Palliative care (PC) in Norway has evolved in close cooperation between the health authorities and health care professionals. A number of official reports and national plans have promoted a stepwise development of PC services on all levels of the public health care system: tertiary care, with palliative medicine units in university hospitals coupled with research groups and regional Units of Service Development; secondary care, with hospitalbased consult teams, inpatient units, and outpatient clinics; and primary care, with home care and designated PC units in nursing homes. The regional Units of Service Development are specifically assigned to research, education, and audit, as well as to development and coordination of services. PC has been closely linked to cancer care and included in the national cancer strategy. Starting the organizational development at the tertiary level has been crucial for educational and audit purposes, and has provided an excellent basis for networking. The Norwegian strategy for PC has resulted in rapidly increasing quantity and quality of services, but several challenges are still pending. Further improvement of the financial reimbursement system is needed, in particular concerning the funding for PC units in nursing homes. There are also challenges related to expertise and training, including establishing a program for palliative nursing and getting palliative medicine recognized as a medical specialty. J Pain Symptom Manage 2007;33:599e604. Ó 2007 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Palliative care, organization, public health care Address reprint requests to: Stein Kaasa, MD, Department of Cancer Research and Molecular Medicine, Faculty of Medicine, NTNU, 5th Floor Cancer Building, St. Olavs Hospital, N-7006 Trondheim, Norway. stein.kaasa@ntnu.no Accepted for publication: February 1, Ó 2007 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved. Introduction During the disease trajectory, patients with incurable illnesses will need assistance from a wide range of health care services, including community care, specialist hospital care, and inpatient as well as outpatient services. For optimal treatment, a basic level of palliative care (PC) expertise is required within all these /07/$esee front matter doi: /j.jpainsymman

2 600 Kaasa et al. Vol. 33 No. 5 May 2007 areas of health care, and specialist PC should be easily available to patients and professionals at all levels of services. Thus, in Norway, integration of PC into the existing health care system has been the main objective. The Norwegian health care system is public and built on the concept of equity, including equal access to services for equal needs and services with the same standards and quality for all. The system is organized on three levels. Through family practitioners and home care services, primary or community care has the responsibility for patients staying at home, and is also responsible for the nursing homes. Hospital and specialist services are run by the State through the Ministry of Health. The country is organized into five Regional Health Authorities. Each of these provides secondary services, through smaller and larger hospitals at varying levels of expertise, whereas tertiary hospital care is provided by the university clinics. With approximately 4.6 million inhabitants, large parts of Norway are rural areas with a scattered population. In particular, this is true for the Northern, Middle, and Western Health Care Regions, where many patients live far from the nearest hospital or university hospital, and where organizational PC models suitable for larger cities will have to be modified to be functional. Dissemination of PC expertise to remote areas is, therefore, a challenge for the Norwegian health authorities in addition to the implementation of appropriate services in general. This paper describes the development of PC services in Norway, from the initial initiatives, through official reports, the establishment of Units of Service Development at the regional level and clinical PC programs on a university level in all health care regions, and the development of a national Standard for Palliative Care. Current status and strategy are discussed, as are future challenges, including financial reimbursement systems. Official Norwegian Reports During the 20th century and into the third millennium, several official reports focused on the need to improve PC within the Norwegian health care system (Table 1). The Norwegian Cancer Plan from represents the cornerstone for the later development. In accordance Table 1 Recent National Official Reports Important for the Development of PC NOU 1997:20 The Norwegian Cancer Plan St prp no e98 Cancer plan (I) 1999e2003 NOU 1999:2 Plan for PC 2004 Cancer plan (II) 2004 Standard for PC 2006 Cancer strategy 2006e2009 NOU ¼ Norwegian Official Report. St prp no ¼ Proposition presented to the storting (Norwegian Parliament) no e98. with former reports as early as in 1984, 2 integration into existing services was underlined, as was the need for palliation to be a part of the total treatment and care offered to the individual cancer patient (Table 2). Following the Cancer Plan, a national report on PC was published in 1999, 3 offering further and more detailed recommendations for the organization of PC at all levels of the public health care system. For primary care, strengthened home care services and nursing home beds dedicated to PC were advocated. To ensure the necessary expertise in remote areas, it was suggested that each community should have at least one physician and one nurse with proper PC training. On the secondary level, PC teams as well as inpatient and outpatient PC units in larger hospitals were recommended, whereas on the tertiary level, in addition to having specialized PC units in university hospitals, the establishment of regional Units of Service Development was highly encouraged. These units would be responsible for the development of PC in each of the five health care regions, including audit, teaching, and research. Establishing PC chairs at all medical schools was also recommended. Thus, it was expected that scientific evaluations of the development of the new integrated PC model should be undertaken. 4,5 Based upon the reports from 1997 to 1999, the subsequent Cancer Plan 1999e Table 2 Key Elements in the Organization of PC in Norway PC as part of the public health care system PC as an integrated chain from first through secondary through tertiary care Development of PC programs at the tertiary level as first step PC as an integrated part of cancer care PC ¼ palliative care.

3 Vol. 33 No. 5 May 2007 Palliative Care: A Public Health Model 601 recommended funding for important parts of the PC model. In 2004, a follow-up report on the 1997 document was launched, 7 as well as the national Standard for Palliative Care. 8 The latter was initiated and published by the Norwegian Association for Palliative Medicine in cooperation with the Norwegian Medical Association. Its essential guidelines were fully in accordance with earlier reports, but went further and gave a more complete description of the organizational models at the primary, secondary, and tertiary levels. The document also described standards for education and training for physicians, and included arguments and recommendations to establish palliative medicine as a specialty. Additionally, advice concerning PC expertise for other health care professionals was given. Very soon, the Standard for Palliative Care became an important political document, providing a detailed basis for organizational and educational strategies. In summary, a number of national reports have promoted a stepwise development of a common, national understanding of the necessary organizational tools for further improvement of PC services, and a stepwise implementation of the various elements. The final integrated organizational model is presented in Fig. 1. Development of PC in Norway In parallel with the stepwise development of official strategies for the organization of PC, various programs have been established, although usually with time-limited funding. These programs may be regarded as projects carried out to test the clinical validity of the official recommendations, which in turn have served as templates for further development of the national plans. In 1993, the first comprehensive palliative medicine unit, comprising inpatient and outpatient services as well as an ambulatory multidisciplinary team, was established in Trondheim. 9,10 The program was organized as a unit within the Department of Oncology. Right from the start, the clinical services in Trondheim were formally linked to the Medical Faculty at the university through the establishment of the first chair in palliative medicine in the Nordic countries. For the first five years, the chair was funded by the Norwegian Cancer Society, and thereafter on a regular basis by the Medical Faculty at The Norwegian University of Science and Technology, Trondheim. As a follow-up to these innovations, a multidisciplinary research group was initiated in collaboration with the Pain Unit at the University Hospital in Trondheim. 11 This research unit, the Pain and Palliation Research Group, has been responsible for the promotion of PC research nationally, and set an example for the university-based PC centers in the country. Apart from the unit in Trondheim, PC teams and/or day care centers were also established in other major cities. These were later expanded to more comprehensive centers with inpatient facilities, but lacking the strong academic connections. Overall, the first services were dependent on fundraising and Level of health care Hospital (Level 2 and 3) Community (Level 1) 3 Palliative Care Unit Acute inpatient unit Outpatient clinic Consult team University Chair in Palliative Medicine Research Group Unit of Service Development Teaching Service development Audit 2 Acute inpatient/ outpatient unit Consult team 1 PC units in nursing homes Dedicated personnel at community level Fig. 1. The regional organization of PC in Norway.

4 602 Kaasa et al. Vol. 33 No. 5 May 2007 contributions from the National Cancer Society, and during the first years of this innovative period, the lack of permanent funding hampered further establishment of services. The Norwegian Cancer Plan of ,6 and the subsequent report on PC 3 did, however, result in considerable grants. At the turn of the century, the Norwegian government allocated substantial economic resources to all areas of cancer care, including PC. The decision to provide earmarked national funding to establish a Unit of Service Development in all five health care regions was an essential step to further regional development of PC. These units were specifically assigned to research, education, and audit, and were given a role in coordinating, promoting, and developing PC in their respective regions, serving hospitals as well as primary care. Between USD 7 and 8 million, were granted for this purpose from 1999 to At the end of this period, all five units were established and well functioning, and were incorporated into the regional health care services on a permanent basis. By establishing these units, the government created a system for surveillance and networking between all PC programs in the region. Today, the regional units have intimate knowledge of their respective areas, have created a national network, and assist the health authorities in planning and evaluating the services nationally. The next step in implementing Norway s PC plan was to encourage hospital managers to establish PC centers (teams and inpatient units), in addition to the ones established in the 1990s. This was first made possible through a set of grants aimed at hospitals, and in 2002e2003, seven new palliative teams and 56 PC hospital beds were established. The funding was given on a yearly project basis and yearly applications were necessary. In 2003, however, a diagnosis-related group billing code was invented for inpatient PC to ensure more robust and predictable funding. This code was linked to the code for palliative treatment in the ICD10, but despite advice from the PC community, the authorities were initially reluctant to state any terms for the use of this code. Due to excessive demands in the first year, financial reimbursement has since been linked to specific conditions for PC teams and units, as stated in the Norwegian Standard for Palliative Care. 8 This system has encouraged the development of new services; hence, in 2006, most Norwegian middle-sized or large hospitals have their own PC program, the services amounting to about 21 PC teams and 21 PC units, with a total of approximately 120 beds. We have good reason to believe that the quality of the care also has been improved, since the Norwegian Standard sets rigid criteria for both quality and quantity in hospitalbased programs. Specialist PC services in hospitals are important, but in Norway a large proportion of patients die in the community, either at home or in nursing homes. Improving the quality of end-of-life care in these settings was the next step to integrate PC into all parts of the Norwegian health care services. From 2004, project-based annual grants have contributed to the establishment of designated PC beds or units in nursing homes, reaching a number of approximately 180 beds in 45 nursing homes by In addition, networks of nurses dedicated to PC and cancer care have been organized in most parts of the country, based on binding agreements between the hospitals and the communities in the region. Several of these nurses have obtained time-limited government grants to work as local coordinators or advisors in PC, focusing especially on collaboration between the health care levels. So far, no permanent financial system has been set up for PC in designated nursing home units. Due to costs related to medications and equipment and enforced demands on staff, running a PC unit is much more expensive than running an ordinary unit in a nursing home. The lack of funding is an obstacle for further development of PC in the community, and a rapid solution to this problem is paramount. National Strategy for Cancer 2006e2009 In the fall of 2006, the Norwegian government s Minister of Health released a new cancer plan, 12 coupled to the appointment of a new national director for cancer care. This plan describes cancer as a national challenge and attempts to meet the increased incidence and prevalence of cancer by a total integrated strategy for all levels of health care, including

5 Vol. 33 No. 5 May 2007 Palliative Care: A Public Health Model 603 prevention, early detection, treatment, rehabilitation, PC, and research. Thus, one of the targeted challenges is the need to further develop PC. During the first period of implementation of the plan, the director has decided to focus on how to organize and finance PC units/ beds in nursing homes. Based on the Standard for Palliative Care, defining requirements for nursing home staff education will be part of the task, including recommendations for specialized training in palliative medicine for physicians. Discussion A major feature of the development of PC in Norway during the last two decades has been the systematic and consistent approach to organize PC as an integrated part of the public health care system. This has been possible through a consensus among the PC professionals, especially within the Norwegian Association for Palliative Medicine, which is connected to the Norwegian Medical Association. Furthermore, the overall objectives have not been changed: equity of services, the opportunity for PC patients to stay at home as much and as long as possible, and care given on a level that is sufficient and effective enough to fulfill the needs of each individual patient. Flexible systems and optimal communication between the levels have continuously been stressed. The principle that the primary care physician is responsible for the patient at home has never been questioned, but primary care services should be linked to specialist care through a PC network, in which the Units of Service Development plays an important role (Fig. 1). The development of PC in Norway since 1995 has to a large extent profited from the experiences and development of the integrated program in Trondheim. This academic unit has successfully assessed various models of PC, 4,5 their organizational achievements as well as their quality of care for both patient and family, 13 documenting the results internally at the hospital, nationally, and through scientific publications internationally. Furthermore, the national collaboration between the regional Units of Service Development, including key stakeholders, has been highly important to the establishment of a national PC network and to setting the standards for the organizational development. For many reasons, PC in Norway has been closely linked to cancer care. The Norwegian Cancer Plan represented the basis for the rather rapid development of PC services during the last decade, and its primary recommendations have been incorporated into later reports on cancer strategy. The regional Units of Service Development are connected with cancer departments on a tertiary level, and most PC teams or units on the secondary level are organized jointly or in close cooperation with oncology wards or outpatient units. This approach has several advantages. First of all, most patients who are referred to PC are cancer patients. To adequately handle the problems presented by these patients, a proper understanding of their disease is paramount, including the appropriate use of oncological treatment modalities for palliation. A joint organization with oncologists will ensure that this knowledge is available. A close linkage between the two areas of medicine, as in Norway, may also encourage the integration of basic PC into general oncology practice. On the other hand, if palliative medicine and oncology are too closely associated, the development of palliative medicine as a distinct medical specialty may be hampered or delayed. The close link with oncology services may also represent an obstacle to referrals of patients with other, chronic, and incurable diseases, and it may be more difficult for PC professionalsdbeing identified as those working with cancerdto get access to other areas of medicine. The Norwegian Standard for Palliative Care 8 has been accepted by the medical community as well as by the administrative and political health authorities. The document outlines how PC should be developed in the next years, and has already proved very influential in organizational matters. At present, the greatest challenges are related to expertise, research, and financial systems like the problems connected with funding for PC units in nursing homes. With regard to expertise and training, palliative medicine is still not properly integrated into undergraduate or postgraduate medical education, and it is not recognized as a medical specialty in Norway. In addition, there is no nationally agreed training program for palliative nursing. As long as these issues

6 604 Kaasa et al. Vol. 33 No. 5 May 2007 are unresolved, proper staffing of palliative teams and units will remain a challenge. There is also still insufficient funding for PC research, and a lack of academic chairs in the field. Some of these issues are addressed in the recent Norwegian Cancer Strategy Document, 12 and will hopefully be attended to in the near future. References 1. Norges offentlige utredninger In: Omsorg og Kunnskap. Norsk kreftplan. vol. 20 (Norwegian Official Report. Care and Knowledge. Norwegian Cancer Plan. Report no. 20, 1997). NOU, ISBN ; Norges offentlige utredninger In: Pleie og omsorg for alvorlig syke og døende mennesker, vol. 30 (Norwegian Official Report. Care for the Seriously Ill and the Dying. Report no. 30, 1984). NOU, Norges offentlige utredninger In: Livshjelp. Behandling, pleie og omsorg for uhelbredelig syke og døende, vol. 2 (Norwegian Official Report. Life Help. Treatment and Care for the Incurably Ill and the Dying. Report no. 2, 1999). NOU, ISBN ; Jordhøy MS, Fayers P, Saltnes T, et al. A palliative-- care intervention and death at home: a cluster randomised trial. Lancet 2000;356:888e Jordhøy MS, Fayers P, Loge JH, Ahlner-Elmqvist M, Kaasa S. Quality of life in palliative cancer care: results from a cluster randomised trial. J Clin Oncol 2001;19(18):3884e Om Nasjonal kreftplan og plan for utstyrsinvesteringer ved norske sykehus. St prp nr 61 (1997e98) [About the National Cancer Plan and the Plan for Equipment Investments in Norwegian Hospitals. Proposition presented to the Storting (Norwegian Parliament), no. 61 (1997e98). Ministry of Health and Social Services 1998]. Sosial- og helsedepartementet Nasjonal strategi for arbeid innenfor kreftomsorgen. Kvalitet, kompetanse og kapasitet. Rapport til Helsedepartementet, juni (National Strategy for Work within Cancer Care. Quality, Expertise, and Capacity. Report presented to the Ministry of Health, June 2004). 8. Norsk forening for palliativ medisin. Standard for palliasjon (Norwegian Association for Palliative Medicine. Norwegian Standard for Palliative Care. The Norwegian Medical Association English translation asset/32504/1/32504_1.pdf). ISBN Seksjon lindrende behandling. Festskrift. Seksjon lindrende behandling gjennom 10 år. St. Olavs Hospital (The Palliative Medicine Unit, St. Olavs Hospital, Trondheim. Memorial Volume. The Palliative Medicine Unit through 10 Years. St. Olavs Hospital 2004). ISBN ; Jordhøy MS. The impact of comprehensive PCdresults from a cluster randomised trial. Doctorial Thesis. Faculty of Medicine, NTNU. ISSN , Thesis no 221, Kaasa S, Dale O. Building up research in palliative care: an historical perspective and a case for the future. Clin Geriatr Med 2005;21:81e Helse- og omsorgsdepartementet. Nasjonal strategi for kreftområdet Available from (Ministry of Health and Care Services. National Cancer Strategy Available from no Publication code I-1113). Publikasjonskode: I Ringdal GI, Jordhøy MS, Kaasa S. Family satisfaction with end-of-life care for cancer patients in a cluster randomized trial. J Pain Symptom Manage 2002;24(1):53e63.