493342 2013 PMJ28210.1177/0269216313493342Palliative MedicineKlinger et al. Original Article Palliative Medicine Barriers and facilitators to care for 2014, Vol 28(2) 111 –120 © The Author(s) 2013 the terminally ill: A cross-country Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0269216313493342 case comparison study of Canada, pmj.sagepub.com England, Germany, and the United States Christopher A Klinger1,2, Doris Howell3 David Zakus4,5, Raisa B Deber1 Abstract Background: Why do many patients not die at their preferred location? Aim: Analyze system-level characteristics influencing the ability to implement best practices in delivering care for terminally ill adults (barriers and facilitators). Design: Cross-country comparison study from a “most similar—most different” perspective, triangulating evidence from a scoping review of the literature, document analyses, and semi-structured key informant interviews. Setting: Case study of Canada, England, Germany, and the United States. Results: While similar with regard to leading causes of death, patient needs, and potential avenues to care, different models of service provision were employed in the four countries studied. Although hospice and palliative care services were generally offered with standard care along the disease continuum and in various settings, and featured common elements such as physical, psycho- social, and spiritual care, outcomes (access, utilization, etc.) varied across jurisdictions. Barriers to best practice service provision included legislative (including jurisdictional), regulatory (e.g. education and training), and financial issues as well as public knowledge and perception (“giving up hope”) challenges. Advance care planning, dedicated and stable funding toward hospice and palliative care, including caregiver benefits, population aging, and standards of practice and guidelines to hospice and palliative care, were identified as facilitators. Conclusion: Successful implementation of effective and efficient best practice approaches to care for the terminally ill, such as shared care, requires concerted action to align these system-level characteristics; many factors were identified as being essential but not sufficient. Policy implementation needs to be tailored to the respective health-care system(s), monitored, and fine-tuned. Keywords Health policy, palliative care, Canada, England, Germany, United States Introduction 1 Institute of Health Policy, Management & Evaluation (IHPME), University of Toronto, Toronto, ON, Canada Despite national strategies or policy frameworks for care at 2Bruyère Research Institute, Ottawa, ON, Canada the end of life, many terminally ill patients still do not die 3 Lawrence S Bloomberg Faculty of Nursing, University of Toronto, at their preferred location1–3 or under the form of care Toronto, ON, Canada; Ontario Cancer Institute, Toronto, ON, desired.4,5 This study analyzed country-specific system- Canada 4Department of Medicine, University of Alberta, Edmonton, AB, Canada level characteristics that influence service delivery in the 5 Division of Community Engagement, Office of Global Health, University care of terminally ill adults (defined as individuals over 18 of Alberta, Edmonton, AB, Canada years of age whose death will be a direct consequence of a specified terminal malignant or nonmalignant disease that Corresponding author: Raisa B Deber, Institute of Health Policy, Management and Evaluation cannot be cured, as opposed to a sudden death), including (IHPME), University of Toronto, Health Sciences Building, 155 College barriers and facilitators to care, and their implications from Street, Suite 425, Toronto, ON M5T 3M6, Canada. a “most similar—most different” perspective. Email: [email protected] 112 Palliative Medicine 28(2) Background These four countries (cases), ranked in the upper half of The Economist Intelligence Unit’s the Quality of death Coinciding with rapid innovations in assistive, communica- report,32 were actively pursuing or refining hospice and pal- tions, information, and treatment technologies as well as liative/end-of-life care legislation and were similar with the expansion of (medical) knowledge,6,7 health-care sys- regard to leading causes of death,33–36 patient needs, and tems are faced with the growing needs and demands of an potential approaches to/resources for care. They varied, aging population. Living increasingly longer with chronic however, with regard to system-level characteristics,37 such and life-limiting conditions,8–10 death trajectories are as health-care legislation, regulation and financing, models changing,8,11,12 and expectations toward the system(s)’ abil- of service provision, resource utilization (Table 138–57), and ity to meet needs are often heightened with an expectation service outputs. for best practice approaches along the continuum and across settings, including hospice and palliative care where Conceptual framework/hypothesis appropriate.13 The European Association for Palliative Care’s (EAPC)14 and World Health Organization’s (WHO)15 Cross-country health policy analysis and implementation respective definitions of palliative care specifically include science provided the theoretical background for the con- the improvement of quality of life, with scientific evidence ceptual framework (Figure 1) developed for the study. It in this regard16–18 mounting. Furthermore, economic issues was hypothesized that country-specific system-level char- have gained a growing importance, putting administrators acteristics/elements influence best practice service delivery and clinicians globally under increasing pressure to adopt in terms of approaches to care taken, resource utilization, effective and efficient treatment practices.19 In line with and implications for outcomes and costs. Bosanquet and Salisbury’s20 notion of accelerated learning through international contact, cross-country analyses may Data sources and management assist in enhancing best practice service provision. 1. To establish a baseline concerning the respective health-care systems, a scoping review of the litera- Methods ture between 1990 and June 2012 was performed, A cross-country case comparison study21 from a “most sim- utilizing key word searches and Boolean operators ilar—most different” perspective was performed. Regarded in major scientific search engines such as as a distinctive form of empirical enquiry22 and suitable to CINAHL, EMBASE, MedlinePlus, and the cata- knowledge generation in the complex23 and variable field logue of the University of Toronto Libraries. To of palliative care and its evaluation,24–26 the case study access the gray literature, a Google (Google Inc., methodology allowed for the investigation of phenomena Mountain View, CA, USA) search was completed, in their real-world context.21 Cross-referencing/triangula- and the web sites of major regional and national tion of multiple sources of evidence may lead to a deeper aging, cancer, hospice, and palliative care organi- understanding of the data, their comprehensive representa- zations were combed. tion, and larger meaning.25,26 For this policy study, the fol- 2. Access to policy documents was secured through lowing data sources were included: the respective countries’ online legislative libraries, and standards of practice/guidelines to care were 1. Scoping review of the literature; procured. National Minimum Data Sets (MDS) 2. Document analysis/archive work; were accessed where available. 3. Semi-structured key informant interviews. 3. The first author conducted 77 semi-structured key informant interviews (Table 2) with predetermined subject matter experts (Supplementary Appendix) Case selection between December 2008 and December 2009, rep- Four industrialized Western countries with highly devel- resenting four categories: oped health-care systems27 and active end-of-life care • Academia; movements,28 including standards of practice/guidelines • National associations (such as aging, cancer, for hospice and palliative care29 and approaching system hospice, and palliative care); integration,30–32 were selected for this research project: • Legislature and health insurance; • Provider organizations. • Canada (Provinces of Alberta and Ontario); • England; Of the 77 interviews, 25 (32%) were face to face and the • Germany; remaining 52 (68%) were by telephone. The majority (59 of • United States (USA). 77 = 77%) were in English; all interviews concerning Klinger et al. 113 Health Policy Analysis and Implementation Science → → System-Level Service Delivery Care Outcomes Characteristics and Costs -Legislation -Models of Care -Regulation -Elements of Care -Financing -Care Packaging Best Practices/ Lessons Learned Figure 1. Conceptual framework. Germany (18 = 23%) were conducted in German. The aver- Results age duration of the interviews was 41 min (range: 32–58 The scoping review and document analyses were used to min). All but two participants (3%) gave permission for describe hospice and palliative care services in the four coun- tape recording; 15 (19%) participants requested that their tries. These are generally offered alongside standard care in name and affiliation be withheld and a general identifier be various settings (hospital, long-term care, home, or (residen- used instead (Supplementary Appendix). All interviews tial) hospice) and during the course of the disease (continuity were transcribed verbatim by the first author where permis- of care), but differ somewhat in access and scope. sion was granted to tape record; otherwise, a summary report compiled right after the completion of the interview was utilized for data analysis. Canada The data from the interviews were entered into NVivo software (Version 9; QSR International, Doncaster, VIC, Moving on from the mainly institutionalized approach Australia) to facilitate data management and coding. A the- favored in the United Kingdom, Canadian hospice and pal- matic content analysis (TCA) approach58,59 was employed, liative care (“hospice palliative care”) services tend to allowing for a descriptive presentation of qualitative data incorporate a palliative consultation team within institu- including “quantizing” (i.e. quantitative depiction of qual- tions and home care settings62—with considerable empha- itative data via recurring themes, such as potential finan- sis currently being placed on shared care approaches2,63–65 cial barriers to hospice and palliative care). The qualitative to enhance the partnership in service provision between analysis of the key informant interviews (coding) was con- primary care providers and expert clinicians/teams. As ducted manually line by line, utilizing both inductive indicated in Table 1, the hospice palliative care utilization (findings emerging from frequent, dominant, and/or sig- rate was 16%–30% of all deaths,46 with most patients hav- nificant themes60) and deductive (conclusions are drawn ing a cancer diagnosis (>90%46). following a premises/hypothesis60) reasoning: themes and categories were developed from the data but analyzed and England refined in connection with the underlying hypothesis, the semi-structured interview guide, and the pertinent litera- Primary palliative care is enhanced with specialist pallia- ture/policy documents (Framework Analysis61). To ensure tive care for complex pain and symptom management, coding reliability, five interviews (7%) were also coded by and services are evolving from a traditionally more insti- an independent second coder. Consistency toward inter- tutionalized model (residential hospices and hospice day pretation/themes was monitored by and discussed within care) toward integrated approaches—spanning bounda- the Thesis Committee (D.H., D.Z., and R.B.D.), and con- ries between different locations of care and the health- sensus reached where necessary. Ethics approval for the care and social service fields—under the End of life care study was received from the University of Toronto, Office strategy.56 About 23%53 of all deaths occurred under hos- of Research Ethics (ORE), protocol reference number pice and palliative care, with about 90%53 of patients hav- 23390. ing a cancer diagnosis (Table 1). 114 Palliative Medicine 28(2) Table 1. Access and utilization rates by country. Canada England Germany United States Number of inhabitants and percentage of ~34 million, 17%38 ~63 million, 17%39 ~81 million, 21%40 ~317 million, 14%41 population over 65 years of age Number of hospice and palliative care >60042 (including >97543 (including >115044 (including >500045 (with programs six children’s 36 children’s ones) 86 children’s ones) many willing to ones) accept children) Number of hospice and palliative care >20046 >50047 541748 >430049 physiciansa Number of hospice and palliative care unknown number >100,00050 ~80,00051 >460,00052 volunteers Death under hospice and palliative care ~40,000 (16% to ~152,000 (23%)53 ~110,000 (12%)54 >1,029,000 (41%)52 (utilization rate) 30%b)46 Hospice and palliative care patients with a >90%b46 ~90%53 ~90%55 ~41%52 cancer diagnosis Home deaths (place of residence)c ~30%46 ~30%56 ~30%57 ~67%52 England: Data concerning the United Kingdom were cited. aWith certification or licensure. bEstimate. cHome death/place of residence as a proxy measure for home-based hospice and palliative care. Table 2. Key informant interviews (overview). encouraged under network approaches. The utilization rate in Germany was approximately 12% of all deaths,54 with Category Country Total about 90%55 being cancer patients (Table 1). Academia Canada (2 AB/5 ON): 7 23 (30%) England: 5 United States Germany: 5 United States: 6 Hospice care is governed by the Medicare hospice bene- National Canada (2/1 AB/3 ON): 6 23 (30%) fits,67 providing holistic (end-of-life) care through an inter- associations England: 5 disciplinary team mostly in the patient’s home with a caring Germany: 5 (not curing) focus. Palliative care extends these principles United States: 7 to a broader population and earlier phase of the respective Legislature/ Canada (2/1 AB/2 ON): 5 15 (19%) disease trajectory (i.e. “moving upstream”) as well as health England: 2 alongside curative treatment. About 41%52 of all deaths insurance Germany: 4 occurred under hospice and palliative care; approximately United States: 4 41%52 of these patients had a cancer diagnosis (Table 1). Provider Canada (2 AB/3 ON): 5 16 (21%) organizations England: 3 Germany: 4 Semi-structured key informant interviews United States: 4 The semi-structured key informant interview guide AB: Alberta; ON: Ontario. included questions on the following five themes: Breakdown by country: Canada: 23 interviews (30%) (national: 4 interviews; Alberta: 6 interviews; Ontario: 13 interviews); England: 15 interviews (20%); Germany: 18 interviews (23%), and United States: 21 • Background and Terminology; interviews (27%). • Barriers and Facilitators; • Health Policy and the Research Agenda; • Future of the Hospice and Palliative Care Germany Movements; Primary palliative care (“palliative medicine”) in the ambu- • Emerging Themes and Noteworthy Statements. latory sector generally takes precedence over in-patient care, with specialist services enhancing care for patients with Table 3 provides an overview on the number of refer- complex pain and symptom management needs under new ences to text coded and sources by country. Emerging legislation (Spezialisierte Ambulante Palliativversorgung issues included the controversy around palliative sedation (SAPV)).66 Cooperation with existing hospice services within the Liverpool Care Pathway in England,68 the (mainly providing psychosocial and supportive care) is OxyContin® controversy69 in Canada, and allegations Klinger et al. 115 Table 3. Themes and categories alongside references to text coded by country. Theme Categories Countries Canada England Germany United States Background and - State of Hospice and 198 references to 178 references to 129 references to 217 references to Terminology Palliative Care Service text coded from text coded from text coded from 18 text coded from Delivery; 23 sources 15 sources sources 21 sources - Terminology Barriers and - Barriers and 279 references to 200 references to 309 references to 212 references to Facilitators to Facilitators; text coded from text coded from text coded from 18 text coded from Care - “Palliative Care” versus 23 sources 15 sources sources 21 sources “Palliative Medicine” Health Policy - Health Policy (including 101 references to 72 references to 44 references to 97 references to and the Remuneration); text coded from text coded from text coded from 16 text coded from Research Agenda - Research Agenda 23 sources 15 sources sources 20 sources Future of the - Changes to the 68 references to 43 references to 48 references to 40 references to Hospice and Field (National/ text coded from text coded from text coded from 18 text coded from Palliative Care Organizational Level); 20 sources 15 sources sources 16 sources Movements - Future of the Movements Emerging - Emerging Issues; 14 references to 20 references to 46 references to 75 references to Themes and - Noteworthy text coded from 9 text coded from text coded from 17 text coded from Noteworthy Statements/Quotes sources 10 sources sources 20 sources Statements/ Quotes A total of 2390 references to text coded from the 77 key informants were recorded—722 from 77 sources toward Background/Terminology (30%), 1000 from 77 sources concerning Barriers and Facilitators to Care (42%), 314 from 74 sources with regard to Health Policy and the Research Agenda (13%), 199 from 69 sources focusing on the Future of the Hospice and Palliative Care Movement (9%), and 155 from 56 sources providing Emerging Themes and Noteworthy Statements/Quotes (6%). With regard to the current state of hospice and palliative care service provision in the countries selected (Background and Terminology), system integration remains a key issue alongside challenges to move hospice and palliative care outside of the cancer realm and further “upstream.” For a discussion of barriers and facilitators, see the “Results” section. Effective policy implementation alongside program evaluation was seen as challenges in the health policy realm alongside continued research efforts in the clinical as well as health services research domain. Overall, the future of the respective hospice and palliative care movements was deemed as good (growth) by most of the key informants, with emerging issues (Emerging Themes and Noteworthy Statements) described in the body of the text. toward “death panels” and “pulling the plug on grandma”70 (“branching out of cancer care”)—remained an important in connection with health-care reform (Patient Protection bottleneck, particularly in England and the United States due and Affordable Care Act (PPACA)71) in the United States. to the access criteria set for both, the Gold standards frame- work (GSF)74 and Medicare hospice benefits,67 services. Where health care is a provincial/territorial (Canada) or state Barriers to service provision (Germany, United States) responsibility, jurisdictional issues Key issues toward best practice service provision are identi- with regard to policy implementation (“federalism versus fied in Table 4. Despite meeting Sepulveda et al.’s72 criteria centralism”) were cited as a barrier by a number of key of a discipline through the creation of standards of practice informants—also leading to access (e.g. “postcode lottery”) and the recognition of practitioners and programs alongside and portability differences (including for advance directives). access to remuneration, integration of hospice and palliative In terms of pain management, limited availability of opi- care into the respective health-care systems remains a chal- oid analgesics was not identified as an issue in any country, lenge. A full picture of service utilization (including that by but education and training toward their use as well as pre- minority populations and diagnoses) was deemed essential scribing (and, to a lesser extent, dispensing) were described but incomplete. Neither Canada nor Germany had an MDS, as a challenge. Palliative medicine itself already is a medi- while the National End of Life Care Intelligence Network cal (sub)specialty in England (since 1987) and the United (NEoLCIN)73—as part of the national End of life care strat- States (since 2006), with Canada and Germany moving egy in England56—is currently expanding. toward it. Prescribing privileges for advanced practice Education and training issues (including for volunteers) nurses (APNs)/nurse practitioners (NPs) are a reality in were raised, with specific emphasis being placed on interdis- some American jurisdictions and throughout England (clin- ciplinarity, team work, and culturally sensitive service provi- ical nurse specialists (CNS))—including for (some) con- sion. Prognostication—especially for noncancer diagnoses trolled substances.75 Importantly, public knowledge about 116 Palliative Medicine 28(2) Table 4. Key issues by country. Canada England Germany United States Absence of a Minimum Data Set (MDS) X Xa X Access to hospice and palliative care X X X Xb Branching out of cancer care X X X Composition of the palliative care team X X Xc Financing issues X X X Integration into the health-care system X X X Xd Prescribing of potent analgesics Xe X X Public awareness (including cultural X X X competency) aNational End of Life Care Intelligence Network (NEoLCIN)73 as part of the national End of life care strategy56 is currently evolving. bMinority populations. cOutside of the Medicare hospice benefits67 legislation. dPalliative care (“moving upstream”). eOxyContin® controversy.69 and perceptions of hospice and palliative care were regarded care, physical therapy (PT) and occupational therapy (OT), as suboptimal by many key informants, linked to the denial social work, and speech–language pathology (SLP) ser- of death thesis76,77 and the medicalization/institutionaliza- vices) was found in the context of the American Medicare tion of death and dying.5,78 hospice benefits,67 with service provision around the clock, 7 days a week. As a consequence of different legislative and regulatory Facilitators to service provision requirements, the time frame to access hospice and pallia- Population aging alongside advance care planning was tive care service provision varied from 12 months prior to regarded as a facilitator to service provision by most key an anticipated death in England following the National informants, opening up lines of communication toward the Health Service’s GSF Prognostic Indicators (PIs)90 (Would patient’s end-of-life care wishes. Caveats were placed on you be surprised if this patient would die within the next 12 specificity79,80 and the stability of patients’ treatment months?), (several) months in case of specialized commu- choices at the end of life81,82 as well as on heterogeneity and nity-based palliative care (SAPV) in Germany,66 and 6 changes to the preferred place of death in line with a months under the provisions of the Medicare hospice ben- recently published systematic review.83 The availability of efits67 in the United States to de facto a few months/weeks specific caregiver benefits (Compassionate Care Benefits) in many Canadian jurisdictions under restrictive admission was deemed as a facilitator by Canadian key informants guidelines. despite their limitations84,85 as part of employment insur- Dedicated and stable funding was highlighted as neces- ance (EI) and German key informants (Pflegezeitgesetz). sary to best practice service provision by key informants in Standards of practice and guidelines to care were seen as all four countries selected. English key informants specifi- beneficial throughout (Canada: N = 2 of 23; England: N = cally spoke to the initial funding commitments of £88m in 10 of 15; Germany: N = 4 of 18; United States: N = 6 of 21), 2009/2010 and £198m in 2010/201156 in this regard. with English key informants pointing to the integration of the GSF74 into the national End of life care strategy.56 Discussion Hospice and palliative care standards of practice or guide- lines to care56,86–89 in all countries revolve around patient- This study confirmed the research hypothesis and supported and family-centered care based on the WHO’s definition of the suggestions from the literature37,91–96 that a number of palliative care.15 Common elements along the disease tra- system-level characteristics (including legislation, regula- jectory include the following: tion, financing, and health human resources (HHR)) influ- encing service provision (Figure 1) may act as both barriers • Physical care; and facilitators to achieving best practices. This is in line • Psychosocial care; with Lynch et al.’s37 investigation on barriers toward the • Spiritual care. development of palliative care in Western Europe and Allen and Khan’s91 exploratory work in the Australian context, but The most comprehensive composition of the interdisci- expands the focus to North America: lack of awareness and plinary team (including dietary and grief and bereavement recognition of palliative care correspond to the public per- counseling, hospice aide and homemaking services, nursing ception theme in this cross-country comparison, namely, the Klinger et al. 117 issues of death denying societies and a hampered general service planners and decision makers in the appropriate public knowledge about hospice and palliative care. allocation of resources to meet the complex needs of termi- However, three key informants (2 German, 1 American) nally ill patients.65 Kane and Saltman’s110 warning toward suggested that the existing linkage of hospice and palliative the need to carefully tailor these toward the existing health- care with “giving up hope” as a perception barrier could care system(s) in each of the countries as the appropriate make way to “conserving hope and dignity” as a facilitator. way is recognized, but this cross-national analysis also Lack of coordination among services and uneven palliative clarified the similarities in what policies are required to care coverage (access) correspond with legislative and ensure that best practices can be more widely used. implementation issues, especially difficulties with service coordination between health-care sector organizations and Acknowledgements service provision in rural and remote areas. The issues of a The authors would like to again thank the 77 key informants for lack of education and training of health-care providers with their time and support of the project and the two anonymous peer regard to opioids as well as prescribing challenges are in reviewers for their extremely helpful comments toward an earlier line with previous work,37,97,98 confirming findings toward version of the manuscript. The data collection, interview tran- discrepancies between legal provisions and actual medical scription, and analyses were performed by C.A.K. in partial ful- practice. The EAPC’s Budapest commitments99 further call fillment of the requirements for the degree of Doctor of Philosophy for effective strategies to meet the needs of palliative care (PhD) in the School of Graduate Studies (SGS) at the University populations and a framework toward goals including drug of Toronto. Preliminary findings95 were presented at the 7th World availability, education, policy, quality, and research. Research Congress of the European Association for Palliative Care (EAPC). A resource utilization and cost analysis of The Niagara West End-of-Life Shared-Care Project65 as a potential Limitations best practice approach for efficient and effective hospice and pal- liative care service provision even in a rural setting has been pub- The specific case selection process and practical consid- lished in Palliative Medicine previously. The full thesis is erations such as language barriers have limited this study available from the University of Toronto web site at: http://www. to industrialized countries with a comparable patient pool sgs.utoronto.ca/etd/ and active end-of-life care movement. Future research might extend the analyses to emerging hospice and pallia- tive care approaches (with a broader community focus) in Declaration of conflicting interests locations such as the ones in India100,101 or Sub-Saharan The authors declare that there is no conflict of interest. Africa.102–104 The key informants were mainly selected from a pre-established list, and the interviews were con- ducted in the December 2008 to December 2009 period, Funding when both the End of life care strategy56 in England and This work was supported by a trainee stipend from the CIHR SAPV66 in Germany were new pieces of legislation. Team in Community Care and Health Human Resources (http:// However, the document analyses enabled this study to www.teamgrant.ca) (grant number CTP 79849) (to C.A.K.). take the results of the official follow-up reports into account.48,105–108 References Future cross-country analyses should branch out 1. Bernato A, Brooke Herndon M, Anthony D, et al. 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