How much is known about palliative care in lay public? A case study from Slovenia

doi:10.21203/rs.3.rs-3975131/v1

Background

Around 22,000 people die in Slovenia every year, therefore, knowledge of palliative care options is important. The lay public the lay public must know as much as possible about the benefits offered by palliative care. The purpose of this study is to examine the attitudes and familiarity of lay public with palliative care and the possibilities of palliative care in the home environment. We were interested in statements of relatives of persons who have been admitted to nursing homes as well.

Methods

We invited to survey as many adults as possible, whom we approached via social networks. As a special subgroup of respondents, we included relatives of those who were residents of nursing homes. The survey took place in 2021. We considered only those survey questionnaires that were completely filled out. We used statistical analytical package IBM SPSS program, version 25.0. First, we checked the normality of the data distribution. We used the Kolmogorov-Smirnov and Shapiro-Wilk tests. The non-parametric Mann-Whitney U test was used to determine differences. The level of statistical significance considered was 0.05.

Results

The majority of all respondents were not familiar with the possibility of palliative care at home. In terms of the purpose of palliative care, the respondents ranked first that it is intended for the entire family, second for patients with chronic diseases, and third for patients with cancer. Lay women with higher education were more familiar with the purpose of palliative care. Older respondents were not better informed about the possibility of palliative care in the home environment compared to other respondents. Relatives of people who are housed in a nursing home are not better acquainted with palliative care compared to the rest of the respondents.

Conclusions

Lay people, including relatives of residents of nursing homes, do not know about the possibilities of palliative care at home. Even the elderly, who should be key decision-makers regarding the organization of palliative care, are not familiar with it. We believe that it is necessary to set up a national e-portal to inform the public about the possibilities of palliative care at home.

palliative care

awareness

home care

nursing home

relative

lay public

Recent studies on human life expectancy indicate that 50-year-old men and women in the developed world can expect to live 29 years for men and 34 years for women longer than they did 20 years ago. The expected time without morbidity is 9 years for men and 10 years for women, which means that the last 2 decades of most people’s lives are characterized by an increasing burden of chronic multimorbidity, functional dependence, frailty, and often cognitive decline, which requires a geriatric approach to care [1].

Due to the increase in life expectancy, the incidence of chronic diseases is also increasing. According to Slovenian researchers, around 22,000 people die in Slovenia every year, most of them due to chronic non-communicable diseases (CNCD). A lot of them need palliative care in the last period of their lives [2, 3], supported by multidisciplinary and interdisciplinary activities. Inclusion of patients with an advanced chronic disease and their relatives is essential [4].

Palliative care is an indispensable process that should be part of healthcare for a significant part of the population. It is important that the lay public learn as much as possible about the benefits offered by palliative care [5]. The results of a study by Taber et al. [6] carried out in the United States show that between 50% and 70% of adults were unfamiliar with palliative care. The rest of the respondents mostly held erroneous beliefs. It can be concluded that low awareness and lack of knowledge about palliative care affect the interest of people in the suitability and usefulness of it [7].

In a study conducted in Norway, respondents reported a lack of knowledge about patients’ perceptions of the quality of palliative care services, particularly in the context of community care services, including home care, palliative care in nursing homes, and hospice services [8]. A study by Dionne-Odom et al. [9] found that 55% of their respondents (family caregivers, caring for patients with a deteriorated chronic disease) were unfamiliar with palliative care. Just under a fifth (19%) were familiar with some aspects of the utility of palliative care.

Due to lack of information of how palliative care works, it happens that patients are not involved in palliative care because they know nothing about it. This means that knowing the applicability of palliative care is a prerequisite for its use or implementation in practice. Increasing public knowledge about palliative care corresponds with better patient care provided by relatives of a professional or nonprofessional caregiver [6].

It is a well-known that the main source of information about palliative care is nursing care providers [10]. The modern approach of nursing promotion in palliative care is educational videos, which are a useful tool for learning about palliative care. At the same time, videos increase confidence in the knowledge of nonprofessionals [11]. The assumption is that the information that would be passed on to nonprofessional groups could increase interest in the early involvement of patients in palliative care. Low awareness among the public discourages nonprofessional caregivers from becoming interested, and it creates misconceptions about palliative care [7]. A large share of respondents associates the concept of palliative care with dying, premature death, or discontinuation of treatment, and with application during the last 6 months of life [12].

According to the respondents in a Swedish study, the key goals of palliative care are a “peaceful death” and “pain relief” [13]. Most people avoid this topic and accessible information about palliative care is not sought. A study conducted at the general population by Huo et al. [10] noted that the vast majority of respondents had not heard of palliative care.

Palliative care is usually provided by an interdisciplinary palliative team consisting of a specialist physician, family physician, nurse, community nurse, pharmacist, social worker, clinical psychologist, physiotherapist, occupational therapist, dietician, spiritual care provider, volunteers, and nonprofessional caregivers [14]. The experience of nonprofessional caregivers in providing palliative care for patients discharged from the hospital to their home environment is important because it definitely contributes to better quality care. Patients that also receive psychological support from their relatives in addition to palliative care have greater chances of improving their psychophysical condition in the last stage of life. In such situations, relatives learn to perform certain nursing interventions that are necessary for the patient. This allows them to take greater responsibility in the home care. With transitional care in the home environment, patients become more independent or gain time to be placed in an appropriate institution [15].

In 2010, the Slovenian government approved a national palliative care program to systematize implementation of palliative care, based on which a special working group of experts with various profiles operates at the Ministry of Health. The primary task of the national program is to coordinate and guide palliative care at all levels of healthcare [16]. In 2014, Slovenia was already included in an overview of countries that recognize palliative care as an integral element of the healthcare system [17]. However, national research so far shows that specialized palliative care in Slovenia is provided only at some healthcare institutions [3]. A comparative study shows that palliative care in Slovenia is less accessible and inefficiently organized [18]. The key problems are a lack of knowledge among medical personnel [19], insufficient funding of NGOs dealing with palliative care [3], an insufficient connection between medical institutions and palliative care in the home environment [20], and poor public awareness of the importance and usefulness of palliative care [21].

Because at present palliative care in Slovenia is not optimally organized and is therefore largely unknown and poorly accessible to people that need it. This study examines familiarity with palliative care among the general population. We highlighted the following questions: Do people know what palliative care is and who it is intended for? When do they think it is appropriate to offer patients palliative care? How familiar are they with palliative care options that can be used in the home (non-hospital) environment? Are there any differences between the groups of respondents in terms of their sociodemographic characteristics? We assumed that relatives of nursing home residents are more familiar with palliative care in comparison with those without relatives in nursing homes. Finally, it was also expected that older people would be more familiar with the importance and practices of palliative care than younger people.

This research is based on a descriptive and non-experimental method of empirical research. [22]. The survey addressed two segments of the population. The first group was lay people without prior knowledge of nursing or palliative care. The second group was people with relatives in nursing home. The assumption was that this group is more familiar with nursing in palliative care.

We designed a questionnaire based on a literature review. In the first part we collected demographic data, and in the second part statements, views and expectations about palliative care. Respondents expressed their level of agreement using a five-point Likert scale. Respondents completed the questionnaire anonymously and voluntarily.

We distributed the questionnaire via social networks and by paper formats. An explanation of its purpose and how to complete it was added. It was accessible from January 31st, 2021, to May 20th, 2021. Altogether, 102 completed questionnaires were completely filled in. 50 respondents were relatives of nursing home residents. The number of partially completed questionnaires was 108 and we excluded them from further analysis. The respondents’ demographic data are presented in Table 1.

Table 1

Survey participants’ demographic data
	Participants (n)	%
Sex
Female	63	61.8
Male	39	38.2
Age (years)
18–30	3	2.9
31–40	14	13.7
41–50	30	29.4
51–60	25	24.5
61–70	28	27.5
71–80	2	2.0
Education
Vocational	9	8.8
High school	39	38.2
Junior college	32	31.4
Bachelor’s/master’s	21	20.6
Doctorate	1	1.0
Education in healthcare
Yes	10	9.8
No	92	90.2

Only fully completed questionnaires were included. Data were statistically processed in the IBM SPSS program, version 25.0. First, the normality of the data distribution was checked using the Kolmogorov–Smirnov and Shapiro–Wilk tests. The p-values were below 0.05, indicating that the data were not normally distributed. The non-parametric Mann–Whitney U test was therefore used to determine differences. The level of statistical significance used was 0.05.

76.7% of respondents had already heard of palliative care. The share of respondents with personal experience with palliative care was 10.7%. A smaller percentage of respondents (9.7%) were unfamiliar with palliative care, and a few respondents had received training in palliative care (2.9%).
51.5% of respondents believed that relatives can conduct palliative care of a patient. The respondents understood palliative care as an approach that allows patients to have a better quality of life or helps them make decisions about treatment. They see palliative care as prolonging the life of patients with an incurable disease. Respondents mostly saw the advantages of palliative patient care in reducing pain for patients; improving communication between patients, family members, and the medical team; helping patients manage the side effects of disease treatment; and making patients more able to participate in everyday activities.

Respondents did not agree that the advantages of palliative care are related to relieving the financial burden on the healthcare system, nor that it contributes to encouraging patients to discontinue treatment (Fig. 1). It is alarming that 72.8% of the respondents are not aware of the possibility of palliative care in the home environment with support of a medical team. They stated that informative brochures available at healthcare facilities and videos played in the waiting rooms would be helpful.

Respondents shared the opinion that the appropriate start for palliative care is, when the disease is incurable, when the patient expresses a desire for it, when it is advised by a physician, and when drug treatment shows no progress (Fig. 2).

The respondents felt that palliative care is intended for the entire family and not only for (elderly) patients. Of course, the focus is on the patient that needs palliative care. However, they were less committed to the idea that only patients with cancer or only patients over 65 deserve palliative care (Fig. 3).

The results showed that the respondents with prior palliative care experience are more familiar with how it functions than those without this experience. On the other hand, the assumption that older people know more about the importance of palliative care at home than younger people turned out to be incorrect. The results are presented below.

Table 2

Familiarity with palliative care
Opinion by whether respondents were familiar with palliative care	n	Rank average	p-value
It allows the patient to have a better quality of life.
No	92	52.27	0.044
Yes	10	35.25
Total	102
It extends the life of a patient with an incurable disease.
No	92	50.53	0.296
Yes	10	60.40
Total	102
It helps the patient decide on treatment.
No	92	51.29	0.814
Yes	10	53.45
Total	102
Once a patient begins palliative care, other treatments must be discontinued.
No	92	49.67	0.048
Yes	10	68.35
Total	102
Palliative care focuses exclusively on physical symptoms of disease.
No	92	49.43	0.022
Yes	10	70.50
Total	102
Palliative care is provided exclusively at a hospital.
No	92	49.32	0.015
Yes	10	71.55
Total	102

Table 2 shows, statistically significant differences in four of the six statements: “It allows the patient to have a better quality of life” (p = 0.044); “Once a patient begins palliative care, other treatments must be discontinued” (p = 0.048); “Palliative care focuses exclusively on physical symptoms of disease” (p = 0.022); and “Palliative care is provided exclusively at a hospital” (p = 0.015).

We assumed that relatives of nursing home residents were more familiar with palliative care in comparison with those without relatives in nursing homes (Table 3).

Table 3

Differences between respondents with and without relatives in a nursing home
Who palliative care is for	n	Rank average	p-value
Patients with a chronic disease
With relative in retirement home	58	50.00	0.535
Without relative in retirement home	44	53.48
Total	102
Only patients with cancer
With relative in retirement home	58	47.39	0.084
Without relative in retirement home	44	56.92
Total	102
The whole family, for support in dealing with the disease
With relative in retirement home	58	50.36	0.627
Without relative in retirement home	44	53.00
Total	102
Patients hospitalized at least once due to an incurable disease
With relative in retirement home	58	48.73	0.256
Without relative in retirement home	44	55.15
Total	102
Patients over 65
With relative in retirement home	58	46.54	0.034
Without relative in retirement home	44	58.03
Total	102

A statistically significant difference depending on whether a resident is in a nursing home or not occurs only in the statement that palliative care is intended for patients over 65 (p = 0.034). There are no statistically significant differences for all other variables, which can be seen in Table 2.

The last assumption was that the elderly is more familiar with the option of palliative care in the home environment compared to the rest of the population.

Table 4

Familiarity with palliative care by respondents’ age
Familiararity with palliative care options for patients in home environment with support of medical team	Age (years)				Total
	18–40	41–50	51–60	61–80	Total
Yes
n	1	12	7	8	28
% of all familiar	3.6	42.9	25.0	28.6	100.0
% of age group	5.9	40.0	28.0	26.7	27.5
No
n	16	18	18	22	74
% of all unfamiliar	21.6	24.3	24.3	29.7	100.0
% of age group	94.1	60.0	72.0	73.3	72.5
Total
n	17	30	25	30	102
% of all familiar or unfamiliar	16.7	29.4	24.5	29.4	100.0
% of age group	100.0	100.0	100.0	100.0	100.0

Pearson’s chi-square test = 6.356, p = 0.096.

The data in Table 4 are divided into four statistical subgroups of respondents of different ages. We found that there were no differences between the subgroups of respondents. For example, the majority of 18- to 40-year-olds (94.1%) and the majority of 61- to 80-year-olds (73.3%) are not familiar with this option. The p-value is above 0.05 (p = 0.096), which means that there is no statistical correlation between the variables.

This survey determined that the majority of respondents had already heard of palliative care. It was found that people have different opinions about when it is appropriate to accept palliative care. It was also shown that the majority of people are not familiar with the option of caring for patients in the home environment with the support of a medical team. The assumption that older people are more familiar with the significance and practices of palliative care at home was shown to be incorrect. We hypothesized that women with a higher level of education have a better knowledge of palliative care and its purpose. This was confirmed in the research.

Similar to some studies in other countries, it was found that Slovenians believe that palliative care is intended not only for the patient but for the entire family [15]. It should be noted that people in different countries face similar obstacles. Ignorance of options, lack of information, and insufficient involvement of relatives and nonprofessional caregivers in palliative care is something common to everyone, regardless of demographic characteristics [6, 7].

We assumed that relatives of residents in nursing homes are more familiar with whom palliative care is intended for. It was shown that according to the responses of the respondents, relatives are not better acquainted with palliative care than the rest of the respondents.

Our research has strengths and weaknesses. The strength is opening the discussion about palliative care, which is still a distinctly unexplored topic in certain societies [23]. Another strength of the research is addressing the lack of knowledge about the options for palliative care and their accessibility as part of public healthcare in Slovenia, which was pointed out by some past studies in Slovenia [19].

The study included a limited number of respondents. Based on this study, it is therefore difficult to apply conclusions from the sample to the entire population, which is also a weakness of most research conducted in other countries.

For the first time, we conducted a survey in which we compared the views on palliative care of lay respondents and respondents who had residents in a nursing home. We found that knowledge of options for palliative care at home is weak. We also found that older respondents' knowledge of palliative care is not better than younger ones. We conclude that Slovenia needs a national study to determine how familiar Slovenians are with palliative care and what the advantages are of including nonprofessional caregivers in caring for people at their homes. We sggest to set up a national e-portal to inform the public about the possibilities of palliative care at home.

Conflict of interest

The authors have no conflicts of interest.

Funding

None of the authors have financially benefitted from this study.

Ethical approval

Each respondent gave their consent at the beginning of the survey. The University of Primorska, Faculty of Health Sciences approved the research (No UP-FVZ – 011544 – 600 – 01/2021). Authors confirm that informed consent was obtained from all subjects and/or their legal guardian(s). Informed consent for publication of identifiable information/ images in open access journal was obtained from all study participants.

Acknowledgments

The authors acknowledge all lay people that participated in this study and shared their experiences and thoughts. We thank them for their frankness. We would like to thank the nursing home receptionists who invited the residents' relatives to participate in the research. we would like to thank the management of the University of Primorska for approving the research.

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No competing interests reported.

How much is known about palliative care in lay public? A case study from Slovenia

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Abstract

Background

Methods

Results

Conclusions

Figures

Introduction

Methods

Results

Discussion

Conclusion

Declarations

References

Additional Declarations

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