Physicians' Beliefs and Attitudes About End-of-Life Care: A Comparison of Selected Regions in Hungary and the United States

Article Outline

• Abstract
• Introduction
• Methods
• Results
  • Demographics
  • Perceived Knowledge of Hospice Care and Interest in Knowledge Acquisition
  • Care Practices and Opinions
  • Physician and Patient/Family Communications
• Discussion
  • Limitations
• Appendix. 
• References
• Copyright

Abstract 

Context

Unlike primary care physicians in the U.S., it is only recently that Hungarian primary care physicians have had the educational resources for providing end-of-life care and the availability of hospice services as part of the Hungarian health care system.

Objectives

The aim of this study was to assess, compare, and contrast beliefs and practices of end-of-life care held by primary care physicians practicing in selected regions of the United States and Hungary.

Methods

A 22-item questionnaire, written in English, translated to Hungarian, and pilot tested in both countries, was mailed to 339 Hungarian and 330 U.S. physicians, with response rates of 54% and 48%, respectively. Descriptive and bivariate analyses were conducted to compare the samples.

Results

Over half of U.S. physicians indicated they were quite knowledgeable about hospice care and rated currently available services for the terminally ill as exceptionally good, compared to less than 10% of Hungarian physicians. The physicians' differing beliefs that discussing a terminal prognosis fosters a sense of hopelessness is consistent with disclosure beliefs and practices. The majority of U.S. physicians believe it is the patients' right to know and always tell them when the diagnosis is terminal. Hungarian physicians (44%) believe that the patient's right to know is balanced by the physician's judgment of the patient's best interest, and an additional 40% disclose only if asked.

Conclusion

These results illustrate some of the important differences in physicians' beliefs about the care of terminally ill patients between the two countries and can be used to guide medical education and practice.

Key Words: Cross-country, Hungary, United States, physician attitudes, hospice, end-of-life care

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Introduction 

Relief from suffering is a basic and universal human right. Palliative care addresses this right through a model of interdisciplinary, comprehensive, patient-centered care for those diagnosed with advanced illness. Availability of palliative care (including hospice care) for terminally ill patients varies across the world, attributed in part to the lack of resources, formalized policies, and integration into health care systems.¹ Modern hospice, as a form of palliative care that specializes in the care of terminally ill patients, began in the 1960s in Britain and has proliferated throughout many areas around the globe. Although the philosophy of hospice care is nearly universal, there are variations in provision and utilization of services. For the patients and their families to fully realize the benefits of these services, understanding the knowledge and attitudes of referring physicians is critical. Although, in many instances, anyone can refer a patient to hospice, the role of physicians as gatekeepers is well understood. How physicians perceive this role can greatly influence hospice utilization² or access to other forms of palliative care. To assess the influence of physicians' attitudes and practices on end-of-life care, we surveyed physicians in two countries with distinct service delivery systems—Hungary and the United States.

The Republic of Hungary, located in Central Eastern Europe, has a population of approximately 10 million people. Of those, 94% are ethnic Hungarian, with the largest minority comprising the Roma population at 2.1%. Hungary is approximately 36,000 square miles, slightly smaller than the state of Indiana. The Hungarian national health care system provides basic universal coverage, which in addition to acute care includes preventive care, screenings, rehabilitation, and hospice care. There are a growing number of options for private pay health care services. Table 1 provides a demographic comparison of Hungary and the United States.³, ⁴

Table 1. Demographic Comparisons

With dramatic sociopolitical changes occurring in Central and Eastern Europe from 1989 forward, opportunities for innovation in health care were numerous. The hospice model of care became more widely applied in Hungary in the 1990s. Hungary's first hospice program was established in Budapest in 1991. This opened the door for the Hungarian hospice movement to advocate for improved care of terminally ill patients. The Hungarian Health Act of 1997, for the first time, named “hospice” as the best intervention for care of terminally ill patients.⁵ From 1997 to 2004, the Hungarian Hospice and Palliative Care Association, with the support of the Ministry of Health and other agencies, worked diligently to integrate hospice care into the health care system. Although services had been sporadically available since the mid-1990s, reimbursement for hospice did not become available in Hungary until 2004. At that time, the Hungarian government initiated a two-year demonstration project under which the National Health Insurance Fund reimbursed programs for providing hospice services.

Structured similarly to the Medicare Hospice Benefit in the United States, hospice reimbursement is made to hospice programs, whereas primary care physicians continue to be reimbursed for their primary care services. Referral to hospice care provides the patient with additional resources and does not diminish the role or reimbursement of the primary care physician. In addition, it should be noted that terminally ill patients who are admitted to a hospital are treated by hospitalists rather than by their primary care physicians.

It was anticipated that this new funding would increase availability and referrals to hospice programs as had occurred in the United States. As expected, the number of programs in Hungary doubled. Today, 55 hospice programs are operating throughout the country. Table 2 provides historical and recent (2006) comparisons of hospice in the United States and Hungary.⁶, ⁷

Table 2. Hungarian and U.S. Hospice Comparisons

The aim of this survey was to assess, compare, and contrast knowledge and perceptions of end-of-life care held by primary care physicians practicing in selected regions of the United States and Hungary. For both Hungary and the United States, this information is needed to guide the direction of education for medical students and practicing physicians who will be and are caring for terminally ill patients and their families. We hypothesized that differences exist because of the duration and breadth of hospice availability in each country, whereas similarities could be attributed to universal aspects of death and dying.

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Methods 

As Fulbright recipients, two of the researchers studied in each others' health care settings (J. M. in Baranya County [southwest Hungary] and later A. C. in Summit County [northeast Ohio]). Both regions encompassed a midsize metropolitan area with rural surroundings, a medical school, and multiple teaching hospitals. Although Hungarian graduate medical education is more similar to the U.S. version of family medicine, the actual practice of primary care physicians in Hungary can be more or less similar to that of family practitioners or internists in the United States. For example, primary care physicians who practice in more rural areas commonly treat pediatric patients because of the lack of pediatricians in those areas. In urban areas, where pediatricians are commonly available, many primary care physicians do not see pediatric patients and, therefore, practice more as internists. With regard to end-of-life care, Baranya County was a region with little home hospice penetration and limited access to inpatient hospice services and Summit County had 25 years of experience with the U.S. version of hospice.

Primary care physicians practicing in Baranya County and Summit County were surveyed. A voluntary, self-administered survey was mailed to all primary care physicians (339) in Baranya County. This 29-item survey (Appendix) was designed by two of the investigators (J. M. and A. C.) based on their research questions, experience in hospice care and management, and a review of the literature. The questionnaire contained both quantitative and qualitative questions written in English and translated into Hungarian by a native speaker. The survey was reviewed by Hungarian research associates from the University of Pécs for clarity and pilot tested with University of Pécs faculty physicians before being mailed to the study group in Hungary. After similar vetting in the United States, the English language survey was mailed to all 300 primary care physicians (internists and family practitioners) affiliated with Summa Health System in Summit County. A letter accompanied the survey in each country describing its general purpose and providing assurances of the confidentiality of individual answers. The survey was reviewed and approved by the University of Pécs's Institutional Research Review Committee and Summa Health System's Medical Review Committee before mailing.

The response rates were 54% in Hungary (n=182) and 48% in the United States (n=145). Nine participants were excluded from the analyses of the U.S. sample and 23 from the Hungarian sample because of missing data. Therefore, the results reflect the responses obtained from 136 U.S. respondents and 159 Hungarian respondents with fully completed questionnaires.

Frequencies and percentages were calculated to compare results from the two samples. Cross-tabulations using Kendall's tau-b to test for significance were conducted to compare within-sample bivariate associations between demographic and practice variables with belief and attitudinal variables. Most of these tests were not statistically significant, with the exception of those reported here. All study data were analyzed using SPSS (SPSS Inc., Chicago, IL).⁸ Only quantitative results are discussed in this article.

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Results 

Demographics 

The primary care physicians in the U.S. sample identified their specialty as either family practice (55%) or internal medicine (45%). Because primary care physicians in Hungary do not have an equivalent internist or family practitioner distinction, cross-tabulations were conducted to determine whether any specific response patterns emerged based on practice type and additionally based on gender and/or age of the U.S. physicians. No specific response pattern was found for any of the attitudinal or belief questions. The only statistically significant findings were that younger physicians, male physicians, and internists reported caring for larger numbers of terminally ill patients in the last 12 months. These age and gender differences were not found to be significant in the analysis of the Hungarian sample.

Compared with U.S. physicians, Hungarian respondents were somewhat older, were more likely to be female, practiced in more rural settings, and cared for fewer patients with terminal illness in the last 12 months (Table 3).

Table 3. Primary Care^a Physicians' Demographics

Demographics	U.S. Sample % (n=136)	Hungarian Sample % (n=159)
Age, years
25–34	9.6	9.0
35–44	31.6	17.0
45–54	30.9	35.0
55–64	20.6	31.0
65+	7.4	8.0
Gender
Female	31.6b	61.0
Male	68.4	39.0
Medical license year
1956–1965	2.9	6.4
1966–1975	9.6	33.5
1976–1985	27.9	35.8
1986–1995	33.1	16.8
1996–2005	24.3	7.5
2006	2.2	0.0
Practice population base
>50,000	73.5	40.0
10,000–50,000	25.0	15.0
2000–10,000	0.7	18.0
<2000	0.7	26.0
Terminally ill patients in the last 12 months
0–3	20.6	54.1
4–11	42.7	44.0
12+	36.8	1.9

Perceived Knowledge of Hospice Care and Interest in Knowledge Acquisition 

Fifty-eight percent of U.S. physicians stated that they were quite knowledgeable about hospice care compared with 9% of Hungarian physicians. More Hungarian physicians (74%) than U.S. physicians (57%) indicated that they probably or definitely would participate in educational offerings to learn more about hospice care. In the United States, 71% of physicians rated services for terminally ill patients as exceptionally good vs. 1% of Hungarian physicians. Within the U.S. sample, caring for more terminally ill patients was associated with confidence in one's knowledge of hospice care and higher ratings of services for terminally ill patients (Kendall's tau-b significance <0.0001 and <0.026, respectively). The Kendall's tau-b tests for the same cross-tabulations among the Hungarian physicians were not significant (Kendall's tau-b significance=0.907 and 0.388, respectively).

Care Practices and Opinions 

Physicians' opinions about the most appropriate type of care for terminally ill patients varied between countries, as illustrated in Table 4. Eighty-five percent of Hungarian physicians and 93% of U.S. physicians agreed or strongly agreed with the following statement: “The well-being of terminally ill patients is best served by sharing the management of their care with other health care professionals.” Physicians' beliefs about the ability of terminally ill patients to maintain dignity until death differed between countries as illustrated in Table 5. However, within both samples, cross-tabulations revealed that physicians who cared for more terminally ill patients were more likely to believe that patients were able to maintain their dignity until death, as shown in Table 6 (Hungarian sample Kendall's tau-b significance=0.003 and U.S. sample Kendall's tau-b significance=0.029).

Table 4. Physician Opinion Regarding Most Appropriate Type of Care for Terminally Ill Patients

Most Appropriate Care for Terminal Patients	Hungary, % (n=159)	United States, % (n=136)
Continuous curative care until death	9.0	0.7
Palliative care only	71.0	59.6
Combination of curative and palliative care	14.0	36.8
Other	6.0	2.9

Table 5. Physician Belief About the Ability of Terminally Ill Patients to Maintain Dignity Until Death

Maintaining Dignity	Hungary, % (n=159)	United States, % (n=136)
Most or almost all patients are able	41.0	59.6
Some patients are able	50.0	35.3
Most or almost all patients are not able	9.0	5.1

Table 6. Cross-Tabulations of Number of Terminally Ill Patients Cared for in the Past 12 Months and Opinion Regarding How Many Terminally Ill Patients Are Able to Maintain Dignity Until Death

Patients' Ability to Maintain Dignity Until Death	Hungarian Sample (n=159)				U.S. Sample (n=136)
	Number of Terminally Ill Patients			Total	Number of Terminally Ill Patients			Total
	0–3	4–11	12+		0–3	4–11	12+
	n (%)	n (%)	n (%)	n	n (%)	n (%)	n (%)	n
Most or almost all are able	24 (28)	39 (56)	1 (33)	64	11 (39)	36 (62)	34 (68)	81
Some patients are able	50 (58)	26 (37)	2 (67)	78	14 (50)	20 (34)	14 (28)	48
Most or almost all are not able	12 (14)	5 (7)	0 (0)	17	3 (11)	2 (3)	2 (4)	7
Total, n (%)	86 (100)	70 (100)	3 (100)	159	28 (100)	58 (100)	50 (100)	136

Physician and Patient/Family Communications 

Hungarian and U.S. physicians varied in their level of agreement that discussion of a terminal prognosis with patients leads to hopelessness. Only 7% of the U.S physicians felt that this was often or usually true compared with 55% of Hungarian physicians. Similarly, 52% of U.S. and 13% of Hungarian physicians believed that this was seldom true. Respondents also reported diverse beliefs and practices about disclosing the diagnosis of terminal illness. Forty-eight percent of Hungarian physicians believed that the patient's right to know is balanced by the physician's judgment of whether it is in the patient's best interest to know. An additional 40% reported that they disclose only if asked. In contrast, 77% of U.S. physicians reported that they always tell patients when the diagnosis is terminal.

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Discussion 

Access to home-based care for terminally ill patients is greatly influenced by the physician's knowledge, skills, and attitudes as well as the systems in place to support the provision of such care. Unlike primary care physicians in the United States, Hungarian primary care physicians have until very recently not had the educational⁹ and system resources for providing end-of-life care. A Hungarian study of primary care physicians concluded that a lack of knowledge contributes to negative attitudes toward patient care at the end of life, hindering open communication and supportive relationships.⁹ Most of the Hungarian physicians in the current study claim to have only a basic knowledge of hospice care in contrast to most of the U.S. physicians who report being quite knowledgeable. Yet, among both physician groups, there is a high level of interest in participating in continuing medical education to learn more about hospice care. These results are consistent with previous studies that document physicians' common interest in continuing medical education for end-of-life care, even though their motivations may differ.¹⁰ Hungarian physicians seek more general knowledge, whereas U.S. physicians seek specific information, such as pain and symptom management or hospice rules of participation.¹¹, ¹²

The impact of system differences is apparent in the finding that Hungarian primary care physicians care for fewer terminally ill patients than U.S. physicians. At the time the survey was administered in Hungary, home hospice services were only recently available; hence, most terminally ill patients were being admitted to the hospital, where their end-of-life care was provided by hospital physicians. Given the inaccessibility of home-based hospice care, it is not surprising that most of the Hungarian physicians reported that services for terminally ill patients are inadequate, and fewer than half believed that patients can maintain their dignity until death. Clearly, Hungarian physicians are at a disadvantage, as providing care that assures patients' dignity until death can be a challenge even when the full spectrum of hospice services are readily available.

Interestingly, more Hungarian physicians supported a palliative care only approach for terminally ill patients. This may be a response to the current practice of aggressive curative treatment until the last days of life. U.S. physicians' greater acceptance of a combination of curative and palliative approaches may reflect the growing integration of palliative care into U.S. hospitals and health systems.

The interdisciplinary approach is widely accepted in both countries, but a slightly higher percentage of U.S. physicians agreed with the practice of shared management of terminally ill patients. This is consistent with previous U.S. studies. In a survey of primary care physicians, most (97%) agreed that hospice is effective because of its interdisciplinary approach.¹⁰, ¹³ Although Hungarian physicians reported acceptance of interdisciplinary care for terminally ill patients, in practice, interdisciplinary care teams are rare in the Hungarian health care system.¹⁴

U.S. physicians seem to be more comfortable disclosing a terminal diagnosis to patients, compared with Hungarian physicians, who report using their own judgment regarding such disclosure or disclosing a terminal diagnosis only if asked. In 1984, an international survey found Hungarian physicians to be among the least likely to use the word “cancer” when speaking to a patient and preferring instead to disclose the diagnosis to the family.¹⁵ Discussion about truth-telling began in the late 1980s and increased through 1997, when an entire chapter of the Hungarian Health Care Act was dedicated to patients' rights.¹⁶ Consistent with Hungarian patients' preferences, truthful disclosure was among those rights, creating legal requirements for physicians.¹⁷ However, many Hungarian physicians were poorly trained and were not equipped with the skills to discuss prognosis and end-of-life issues.¹⁸

In this study, more than half of the Hungarian physicians believed that discussing a terminal prognosis causes patients to feel hopeless, whereas most of the U.S. physician respondents felt that this seldom occurs. Such findings reinforce the need for increased emphasis in medical communication, particularly in maintaining and helping to redefine hope while effectively disclosing a terminal diagnosis. Today medical communication courses have been introduced into the Hungarian medical curricula to instruct students in conveying bad news and providing support as death approaches.¹⁹ Competency in end-of-life care is essential for increasing primary care physicians' confidence in their ability to support patients and families in these emotion-laden situations.²⁰

The questionnaire used in this survey proved to be an informative tool to assess physicians' knowledge, attitude, and beliefs regarding the care of terminally ill patients. This article illustrates its use for clarifying these issues, and as such, the authors would welcome its application elsewhere. Additionally, these results elucidate some of the cross-country differences and commonalities in physicians' beliefs about the care of terminally ill patients. Many of their divergent responses may be viewed as a snapshot of each country's evolving approach to end-of-life care. Such a picture, although fixed in time and limited by geography, may help physicians, educators, and administrators to pause and reflect on these findings to effectively plan for the future in both educational and clinical arenas. Regardless of the historical duration of hospice services, having appropriately trained health care professionals brings countries closer to the ultimate goal of assuring increased access to hospice care as a means to provide relief of suffering for dying patients and their families.

Limitations 

The very nature of cross-cultural research poses a challenge in assuring comparable meaning in questionnaire translations. Although the questionnaire was reviewed by native speakers and bilingual colleagues of the authors, identifying specific wording that is meaningful and comparable to physicians practicing within different countries and health care systems required significant, thoughtful discussions. In addition, although the questionnaire was written, in part, based on a literature review and was pilot tested in both countries, it has not been validated. Still, some of the results of the study may illustrate the impact of differences in country of practice and/or language.

Given that our sample consisted of physicians from only one state in the United States and one county in Hungary, these results cannot be generalized to physicians practicing throughout both countries. However, the findings do provide some insight for medical education and administration of hospice and palliative care programs for the regions represented by the samples, relative to the differences in structure and funding of hospice services in each country. The data from the two samples could not be combined as a result of language and resource barriers; this limited the possibility of a more in-depth analysis. These limitations raise awareness of the complexity of effectively exchanging medical education and practices, as well as research, across different countries and health care systems.

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Appendix. 

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