Barriers and facilitators to care for the terminally ill

16 Pages·2014·0.84 MB·English

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:
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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. Are
further/“move upstream” and also zoom in on the econom-
regional variations in end-of-life care intensity explained
ics of service provision from a societal perspective as an
by patient preferences? Med Care 2007; 45: 386–393.
outcome. En route toward truly holistic, person- and fam-
2. Howell D, Marshall D, Brazil K, et al. A shared-care model
ily-centered care, a “deconstruction” of the biomedical
pilot for palliative home care in a rural area: impact on
model might be sought.109 symptoms, distress and place of death. J Pain Symptom
Manage 2011; 42: 60–75.
3. Gomes B, Higginson I, Calanzani N, et al. Preferences for
Conclusion
place of death if faced with advanced cancer: a population
The successful implementation of effective and efficient survey in England, Flanders, Germany, the Netherlands,
best practice approaches to care for the terminally ill Portugal and Spain. Ann Oncol 2012; 23: 2006–2015.
4. Lynn J, Teno J, Phillips R, et al. Perceptions of family
requires concerted action to align system-level characteris-
members of the dying experience of older and seriously
tics, particularly legislation, regulation, financing, and
ill patients. SUPPORT investigators. Study to understand
HHR, with each one alone being essential but not suffi-
prognoses and preferences for outcomes and risks of treat-
cient. Policy implementation needs to be monitored and
ments. Ann Intern Med 1997; 126: 97–106.
fine-tuned to enhance program outcomes: integrated mod-
5. Heyland D, Lavery J, Tranmer J, et al. Dying in Canada: is
els of service provision (such as shared care2,63–65) might be it an institutionalized, technically supported experience? J
able to lead the way as best practice approaches and assist Palliat Care 2000; 16: S10–S16.
118 Palliative Medicine 28(2)
6. Coyle N. Palliative care. In: Ferrel B and Coyle N (eds) 26. Creswell J. Research design: qualitative, quantitative, and
Textbook of palliative nursing. Oxford: Oxford University mixed-methods approaches. 2nd ed. Thousand Oaks, CA:
Press, 2001, pp. 3–6. SAGE, 2003.
7. Motiwala S, Croxford R, Guerriere D, et al. Predictors of 27. Davis K, Schoen C, Schoenbaum S, et al. Mirror, mirror
place of death for seniors in Ontario: a population-based on the wall: an international update on the comparative
cohort analysis. Can J Aging 2006; 25: 363–371. performance of American health care. New York, NY: The
8. Lynn J. Sick to death and not going to take it anymore! Commonwealth Fund, 2007.
Reforming health care for the last years of life. Los Ange- 28. Stjernswärd J, Foley K and Ferris F. Integrating palliative
les, CA: University of California Press, 2004. care into national policies. J Pain Symptom Manage 2007;
9. Wister A. Baby boomer health dynamics: how are we 33: 514–520.
aging? Toronto, ON, Canada: University of Toronto Press, 29. Klinger C and Connor S. National Associations Survey:
2005. advancing hospice and palliative care worldwide. J Pain
10. Lipscombe L and Hux J. Trends in diabetes prevalence, Symptom Manage 2005; 30: 386–388.
incidence, and mortality in Ontario, Canada 1995–2005: a 30. World Health Organization (WHO), Regional Office
population-based study. Lancet 2007; 9563: 750–756. for Europe. Palliative care: the solid facts. Copenhagen:
11. Lynn J and Adamson D. Living well at the end of life: World Health Organization (WHO), Regional Office for
adapting health care to serious chronic illness in old age Europe, 2004.
(white paper). Washington, DC: RAND Corporation, 31. Wright M, Wood J, Lynch T, et al. Mapping levels of pal-
2003. liative care development: a global view. Lancaster: Inter-
12. Lynn J. Living long in fragile health: the new demograph- national Observatory on End of Life Care, 2006.
ics shape end-of-life care. Hastings Cent Rep 2005; 35: 32. The Economist Intelligence Unit (EIU). The quality of
S14–S18. death: ranking end-of-life care across the world (white
13. Murray M. Crossing over: transforming palliative care paper). London: The Economist Intelligence Unit (EIU),
nursing services for the 21st century. Int J Palliat Nurs 2010.
2007; 13: 366–376. 33. Statistics Canada. Leading causes of death, http://www.
14. European Association for Palliative Care (EAPC). Defini- statcan.gc.ca (2007, accessed April 2013).
tion of palliative care, http://www.eapcnet.eu/?TabId=151 34. Office for National Statistics. Mortality statistics, http://
(1998, accessed April 2013). www.statistics.gov.uk (2007, accessed April 2013).
15. World Health Organization (WHO). WHO definition of 35. Statistisches Bundesamt. 2007: Krankheiten des Herz-/
palliative care, http://www.who.int/cancer/palliative/defi- Kreislaufsystems weiterhin häufigste Todesursache, http://
nition/en/ (2002, accessed April 2013). www.destatis.de (2008, accessed April 2013).
16.C onnor S, Pyenson B, Fitch K, et al. Comparing hospice and non- 36. Centers for Disease Control and Prevention (CDC). Lead-
hospice patient survival among patients who die within a three- ing causes of death, http://www.cdc.gov/nchs/FASTATS/
year window. J Pain Symptom Manage 2007; 33: 238–246. lcod.htm (2008, accessed April 2013).
17. Temel S, Greer J, Muzikansky A, et al. Early palliative care 37. Lynch T, Clark D, Centeno C, et al. Barriers to the devel-
for patients with metastatic non-small cell lung cancer. N opment of palliative care in Western Europe. Palliat Med
Engl J Med 2010; 363: 733–742. 2010; 24: 812–819.
18. Maier D and Brawley O. Palliative care and the quality of 38. Central Intelligence Agency (CIA). World Factbook—Canada,
life. J Clin Oncol 2011; 29: 2750–2752. https://www.cia.gov/library/publications/the-world-factbook/
19. Drummond M, Stoddart G, Labelle R, et al. Health eco- geos/ca.html (2013, accessed April 2013).
nomics: an introduction for clinicians. Ann Intern Med 39. Central Intelligence Agency (CIA). World Factbook—United
1987; 107: 88–92. Kingdom, https://www.cia.gov/library/publications/the-
20. Bosanquet N and Salisbury C (eds) Providing a palliative world-factbook/geos/uk.html (2013, accessed April 2013).
care service: towards an evidence base. Oxford: Oxford 40. Central Intelligence Agency (CIA). World Factbook—
University Press, 1999. Germany, https://www.cia.gov/library/publications/the-
21. Yin R. Case study research—design and methods. 3rd ed. world-factbook/geos/gm.html (2013, accessed April 2013).
Thousand Oaks, CA: SAGE, 2003. 41. Central Intelligence Agency (CIA). World Factbook—
22. Johnson J and Reynolds H. Political science research United States, https://www.cia.gov/library/publications/the-
methods. 5th ed. Washington, DC: Congressional Quar- world-factbook/geos/us.html (2013, accessed April 2013).
terly Press, 2005. 42. Canadian Hospice Palliative Care Association (CHPCA).
23. Walshe C, Caress A, Chew-Graham C, et al. Case studies: Directory of services, http://www.chpca.net/family-caregiv-
a research strategy appropriate for palliative care? Palliat ers/directory-of-services.aspx (2012, accessed April 2013).
Med 2004; 18: 677–684. 43. Help the Hospices (HtH). UK hospice and palliative care
24. Payne S, Field D, Rolls L, et al. Case study research meth- services, http://www.helpthehospices.org.uk/about-hos-
ods in end-of-life care: reflections on three studies. J Adv pice-care/find-a-hospice/uk-hospice-and-palliative-care-
Nurs 2007; 58: 236–245. services/ (2012, accessed April 2013).
25. Walshe C. The evaluation of complex interventions in pal- 44. Deutscher Hospiz- und PalliativVerband e.V. (DHPV) ,
liative care: an exploration of the potential of case study Deutsche Gesellschaft für Palliativmedizin e.V. (DGP),
research strategies. Palliat Med 25: 774–781. Deutsche Gesellschaft zum Studium des Schmerzes e.V.
Klinger et al. 119
(DGSS), et al. Wegweiser Hospiz und Palliativmedizin centres/hrmas/_docs/Inductive2003.pdf (2003, accessed
Deutschland, http://wegweiserhospiz.shifttec.de/index. April 2013).
html (2012, accessed April 2013). 61. Srivastava A and Thomson S. Framework analysis: a quali-
45. National Hospice and Palliative Care Organization, Inc tative methodology for applied policy research. J Admin
(NHPCO). Find a hospice or palliative care program, Gov 2009; 4: 72–79.
http://iweb.nhpco.org/iweb/Membership/MemberDi- 62. Public Health Agency of Canada (PHAC). Progress report
rectorySearch.aspx?pageid=3257&showTitle=1 (2012, on cancer control in Canada, http://www.phac-aspc.gc.ca/
accessed April 2013). pubssub-eng.php (2011, accessed April 2013).
46. Canadian Hospice Palliative Care Association (CHPCA). 63. Marshall D, Howell D, Brazil K, et al. Enhancing family
Fact sheet: hospice palliative care in Canada. Ottawa, physician capacity to deliver quality palliative care: an end-
ON, Canada: Canadian Hospice Palliative Care Associa- of-life, shared-care model. Can Fam Physician 2008; 54:
tion (CHPCA), 2010. 1703e1–1703e7.
47. Joint Royal Colleges of Physicians Training Board 64. Johnson AP, Abernathy T, Howell D, et al. Resource utili-
(JRCPTB). Palliative medicine, http://www.jrcptb.org.uk/ zation and costs of palliative cancer care in an interdiscipli-
trainingandcert/ST3-SpR/Pages/Palliative-Medicine.aspx nary health care model. Palliat Med 2009; 23: 448–459.
(2011, accessed April 2013). 65. Klinger C, Howell D, Marshall D, et al. Resource utiliza-
48. Gemeinsamer Bundesausschuss (G-BA). Bericht an das tion and cost analyses of home-based palliative care service
Bundesministerium für Gesundheit über die Umsetzung der provision: the Niagara West End-of-Life Shared-Care Pro-
SAPV-Richtlinie für das Jahr 2009. Berlin: Gemeinsamer ject. Palliat Med 2013; 27: 115–122.
Bundesausschuss (G-BA), 2010. 66. Gemeinsamer Bundesausschuss (G-BA). Erstfassung der
49. American Academy of Hospice and Palliative Medicine Richtlinie zur Verordnung von Spezialisierter Ambulanter
(AAHPM). History. Glenview, IL: American Academy of Palliativversorgung (SAP-RL) nach Paragraph 37b, Sozi-
Hospice and Palliative Medicine (AAHPM), 2011. algesetzbuch V (SAPV Richtlinien). Berlin: Gemeinsamer
50. Help the Hospices (HtH). Volunteer value—a pilot survey Bundesausschuss (G-BA), 2007.
in UK hospices. London: Help the Hospices (HtH), 2006. 67. Centers for Medicare and Medicaid Services (CMS). Medi-
51. Deutscher Hospiz- und PalliativVerband e.V. (DHPV). care hospice benefits. Baltimore, MD: Centers for Medi-
HOPE. Berlin: Deutscher Hospiz und PalliativVerband care and Medicaid Services (CMS), 2007.
e.V. (DHPV), 2011. 68. Adams S. Hospitals “letting patients die to save money,”
52. National Hospice and Palliative Care Organization, Inc http://www.telegraph.co.uk/health/healthnews/9385674/
(NHPCO). NHPCO facts and figures: hospice care in Hospitals-letting-patients-die-to-save-money.html (2012,
America 2010. Alexandria, VA: National Hospice and Pal- accessed April 2013).
liative Care Organization, Inc (NHPCO), 2010. 69. Canadian Broadcasting Corporation (CBC). OxyContin®
53. National Council for Palliative Care (NCPC). National marketing blamed for addiction epidemic, http://www.cbc.
survey of patient activity data for specialist palliative care ca/news/canada/story/2012/03/08/oxycontin-marketing.
services: MDS full report for the year 2008–2009. London: html (2012, accessed April 2013).
National Council for Palliative Care (NCPC), 2010. 70. Montopoli B. Grassley warns of government pulling plug “on
54. Patientenschutzorganisation Deutsche Hospiz Stiftung. grandma,” http://www.cbsnews.com/8301-503544_162-
Hospizliche Begleitung und Palliative Care-Versorgung 5237320-503544.html (2009, accessed April 2013).
(HPCV) Studie 2010: Im Spannungsfeld zwischen Bedarf 71. United States Congress. Patient Protection and Affordable
und Wirklichkeit—Hospizliche Begleitung und Palliative- Care Act (PPACA), http://housedocs.house.gov/energy-
Care-Versorgung in Deutschland. Dortmund: Patientens- commerce/ppacacon.pdf (2010, accessed April 2013).
chutzorganisation Deutsche Hospiz Stiftung, 2011. 72. Sepulveda C, Marlin A, Yoshida T, et al. Palliative care:
55. Sabatowski R and Graf G. Stationäre Einrichtungen, ambu- the World Health Organization’s global perspective. J Pain
lante Palliativ- und Hospizdienste. In: Aulbert E, Nauck F Symptom Manage 2002; 24: 91–96.
and Radbruch L (eds) Lehrbuch der Palliativmedizin. 2nd 73. National End-of-Life Care Intelligence Network (NEoL-
ed. Stuttgart: Schattauer, 2007, pp. 108–123. CIN). National End-of-Life Care Intelligence Network,
56. Department of Health. End of life care strategy. London: http://www.endoflifecare-intelligence.org.uk/home (2012,
Department of Health, 2008. accessed April 2013).
57. Jaspers B and Schindler T. Stand der Palliativmedizin 74. Department of Health. The gold standards framework.
und Hospizarbeit in Deutschland und im Vergleich zu London: Department of Health, 2007.
ausgewählten Staaten (Gutachten für die Enquete-Kom- 75. Kroezen M, Van Dijk L, Groenewegen P, et al. Nurse
mission des Bundestages “Ethik und Recht der modernen prescribing of medicines in Western European and Anglo-
Medizin”). Berlin: Deutscher Bundestag, 2004. Saxon countries: a systematic review of the literature. BMC
58. Weber R. Basic content analysis (Qualitative applications Health Serv Res 2011; 11: 127.
in the social sciences series). New York, NY: SAGE, 1990. 76. Becker E. The denial of death. New York, NY: Free Press,
59. Anderson R. Thematic content analysis (TCA): descriptive 1973.
presentation of qualitative data, http://www.wellknowing- 77. Aries P. Western attitudes toward death: from the middle
consulting.org/publications/pdfs/ThematicContentAnaly- ages to the present. Baltimore, MD: Johns Hopkins Uni-
sis.pdf (2002, accessed April 2013). versity Press, 1974.
60. Thomas D. A general inductive approach for qualita- 78. Connor S. Hospice: practice, pitfalls, and promise. Wash-
tive data analysis, http://www.fmhs.auckland.ac.nz/soph/ ington, DC: Taylor & Francis, 1998.
120 Palliative Medicine 28(2)
79. Teno J, Licks S, Lynn J, et al. Do advance directives pro- 93. Lynch T, Clark D, Centeno C, et al. Barriers to the develop-
vide instructions that direct care? J Am Geriatr Soc 1997; ment of palliative care in the countries of Central and East-
45: 508–512. ern Europe and the Commonwealth of Independent States.
80. Meisel A and Cerminara K. The right to die. 3rd ed. New J Pain Symptom Manage 2009; 37: 305–315.
York, NY: Aspen, 2008. 94. Johnson C, Girgis A, Paul C, et al. Australian palliative
81. Emanuel L, Emanuel E, Stoeckle J, et al. Advance direc- care provider’s perceptions and experiences of the barriers
tives. Stability of patients’ treatment choices. Arch Intern and facilitators to palliative care provision. Support Care
Med 1994; 154: 209–217. Cancer 2010; 19: 343–351.
82. Ditto P, Smucker W, Danks J, et al. Stability of older 95. Klinger C, Howell D, Zakus D, et al. Different approaches
adults’ preferences for life-sustaining medical treatment. to care at the end-of-life: a transcontinental study utilizing
Health Psychol 2003; 22: 605–615. key informant interviews (abstract). Palliat Med 2012;
83. Gomes B, Calanzani N, Gysels M, et al. Heterogeneity 26: 399.
and changes in preferences for dying at home: a systematic 96. DeMiglio L and Williams A. Shared care: the barriers
review. BMC Palliat Care 2013; 12: 7. encountered by community-based palliative care teams in
84. Flagler J and Dong W. The uncompassionate elements of Ontario, Canada. Health Soc Care Community 2012; 20:
the Compassionate Care Benefits Program: a critical analy- 420–429.
sis. Glob Health Promot 2010; 17: 50–59. 97. Clark D and Graham F. Evolution and change in palliative
85. Williams A, Eby J, Crooks V, et al. Canada’s compassion- care around the world. Medicine 2011; 39: 636–638.
ate care benefit: is it an adequate public health response 98. Jünger S, Vranken M, Lynch T, et al. Legal and policy bar-
to addressing the issue of caregiver burden in end-of-life riers to opioid availability in 12 European countries: results
care? BMC Public Health 2011; 11: 335. from a WHO self-assessment checklist for national situa-
86. American Academy of Hospice and Palliative Medicine tion analysis (abstract). Palliat Med 2012; 26: 534–535.
(AAHPM), Center to Advance Palliative Care (CAPC), 99. European Association for Palliative Care (EAPC). Buda-
Hospice and Palliative Nurses Association (HPNA) and pest commitments, http://www.eapcnet.eu/Themes/Pol-
National Hospice and Palliative Care Organization, Inc icy/Budapestcommitments.aspx (2007, accessed April
(NHPCO). National consensus project for quality pallia- 2013).
tive care. Washington, DC: American Academy of Hospice 100. Rajagopal M and Venkateswaran C. Palliative care in
and Palliative Medicine (AAHPM), Center to Advance India: successes and limitations. J Pain Palliat Care Phar-
Palliative Care (CAPC), Hospice and Palliative Nurses macother 2003; 17: 121–128.
Association (HPNA) and National Hospice and Palliative 101. McDermott E, Selman L, Wright M, et al. Hospice and pal-
Care Organization, Inc (NHPCO), 2004. liative care development in India: a multimethod review of
87. Canadian Hospice Palliative Care Association (CHPCA) services and experiences. J Pain Symptom Manage 2008;
and Canadian Home Care Association (CHCA). The 35: 583–593.
Pan-Canadian Gold Standard for Palliative Home Care: 102. Jagwe J and Barnard D. The introduction of palliative care
toward equitable access to high quality hospice palliative in Uganda. J Palliat Med 2002; 5: 160–163.
and end-of-life care at home. Ottawa, ON, Canada: Cana- 103. Wright M and Clark D. Hospice and palliative care in
dian Hospice Palliative Care Association (CHPCA) and Africa: a review of developments and challenges. Oxford:
Canadian Home Care Association (CHCA), 2006. Oxford University Press, 2006.
88. Ferris F, Balfour H, Bowen K, et al. A model to guide 104. Klinger C. Hospice and palliative care in Sub-Saharan
hospice palliative care: based on national principles and Africa. Juxtaposition 2007; 2: 29–31.
norms of practice. Ottawa, ON, Canada: Canadian Hospice 105. Department of Health. End of life care strategy: first
Palliative Care Association, 2002. annual report. London: Department of Health, 2009.
89. National Hospice and Palliative Care Organization, Inc 106. Department of Health. End of life care strategy: second
(NHPCO). Standards of practice for hospice programs. annual report. London: Department of Health, 2010.
Alexandria, VA: National Hospice and Palliative Care 107. Department of Health. End of life care strategy: third
Organization, Inc (NHPCO), 2001. annual report. London: Department of Health, 2011.
90. National Health Service (NHS). The GSF prognostic indi- 108. Gemeinsamer Bundesausschuss (G-BA). Bericht an das
cator guidance. Walsall: National Gold Standards Frame- Bundesministerium für Gesundheit über die Umsetzung der
work Centre, 2011. SAPV-Richtlinie für das Jahr 2010. Berlin: Gemeinsamer
91. Allen K and Khan S. Exploring barriers to the provision Bundesausschuss (G-BA), 2011.
of palliative care in Australia. Aust Med Stud J 2011; 2: 109. Byock I. The best care possible: a physician’s quest to
25–28. transform care through the end of life. New York, NY:
92. Yabroff K, Mandelblatt J and Ingham J. The quality of Avery, 2012.
medical care at the end of life in the USA: existing barri- 110. Kane N and Saltman R. Comparative experience in home
ers and examples of process and outcome measures. Palliat care and pharmaceutical policy. Health Policy 1997; 41:
Med 2004; 18: 202–216. S1–S7.