Palliative and terminal care at home as portrayed in Dutch newspapers in 2009 compared to 2000

Abstract

Background: Terminal care at home is receiving increased attention from the Dutch media, which is relevant for primary care providers. Objectives: To explore the portrayal of terminal care at home in newspapers in the Netherlands in 2000 and in 2009. Method: We performed a systematic analysis of documents retrieved from the LexisNexis Academic NL database. We compared data regarding the ‘point of reference’ (or ‘frame’) and the ‘moral judgments’ in articles appearing in the first six months of 2009 to the same period in 2000. Results: In the year 2000, the framing of articles in regional newspapers appeared to be predominantly consumer-oriented (66%) and in national newspapers predominantly contextual (63%). The moral judgment in the regional articles was predominantly positive (66%), in the national newspapers predominantly negative (58%). In 2009, articles in regional and national newspapers were categorized mainly as consumer-oriented (73% and 55%, respectively), and new themes appeared, i.e. self care and medical topics. For moral judgment, again regional articles were mainly positive (76%) and national articles were mainly negative (39%) and neutral (31%).

Conclusion: Regarding the theme ‘terminal care at home’ as published in Dutch newspapers in 2009 as compared to 2000, the diversity of the framing was more prominent and over all moral judgments were more positive, particularly in regional newspapers. Health care providers should realize that the portrayal of palliative and terminal care at home may differ depending on the type of newspaper—regional or national.

Key words::

• Palliative care
• terminal care
• newspapers
• family physicians
• the Netherlands

Introduction

Palliative and terminal care are receiving increased attention from the media, particularly in the Netherlands due to a new law for euthanasia (introduced in 2002) and the emergence of palliative care support teams (introduced in 1998). Both general practitioners and the public are interested in improving terminal care at home. What impact do these developments have on our society and which aspects of this new interest are mirrored in the mass media?

Compared to other Western countries, the development of palliative care was relatively late in the Netherlands. Furthermore, ‘euthanasia’ was a well known item before the term ‘palliative care’ was introduced in Dutch media. General practitioners are of paramount importance in health care in the Dutch society, and in contrast to some other countries there is not a recognized speciality in palliative care in the Netherlands. General practitioners play an important role during the end-of-life (1,2). In the Netherlands contact with patients quadruples during the last year of the patient's life, and cancer patients receive most of their care from this doctor (3). Most Dutch patients prefer dying at home (4,5).

For general practitioners it is important to have adequate information about the wishes of the patient and their relatives regarding care, starting with a conversation about end-of-life care, as taboos and negative experiences can obstruct good care at the end-of-life. The influence of the attention in the mass media should not be underestimated. General practitioners should realize that the portrayal of terminal care in newspapers influences the public opinion concerning the theme, and vice versa the media mirror trends of the public opinion. Therefore, when discussing terminal or palliative care with patients and their families, it is preferable that general practitioners are aware of how the media portray terminal care at home.

The aim of this study is to describe how newspapers and opinion magazines in the Netherlands address palliative and terminal care at home. The distinction between regional and national newspapers is important because these newspapers are different media in the Netherlands with different backgrounds and audiences. In general, as compared to readers of national newspapers readers of regional newspapers tend be found more in less urban regions and among more traditional communities. National newspapers differ in ideological perspective (e.g. political, religious, economic, and cultural).

Throughout this article the terms ‘point of reference’ (or ‘frame’) and ‘moral judgment’ are used. We focus on these items because they determine the portrayal of any theme in the public media (6). A ‘frame’ or ‘point of reference’ describes the perspective from which a topic is discussed. The ‘moral judgment’ that emerges in a paper gives each newspaper article a ‘prevailing tone’, which is either positive, negative or neutral concerning the main subject of the article.

In our study two questions are addressed: (1) from which points of reference is terminal or palliative care at home discussed in Dutch newspapers in 2009 compared to 2000? (2) Which moral judgments emerge in these Dutch publications?

Method

Search strategy

Initially we searched in the library register of the Netherlands Institute for Health Services Researches (NIVEL) for background information regarding the theme of palliative care within primary care as it appeared in Dutch media. The terms used were ‘terminal care’ and ‘general practitioner’ (n = 97). We performed a search in PubMed and added the MeSH-terms ‘terminal care’ and ‘newspapers’, which resulted in 14 articles. Subsequently, we conducted a systematic search for Dutch daily or weekly newspapers and opinion magazines that had articles on terminal care using LexisNexis Academic NL, a worldwide database of international sources including public periodicals (7). We used the search terms (in Dutch) ‘palliative care’, ‘terminal care’, ‘end-of-life care’, ‘terminal home care’ or ‘euthanasia and home (or home situation)’, resulting in a total initial sample of 544 newspaper articles.

Selection of articles

Only Dutch regional and national weekly and daily newspapers and opinion magazines were selected for further analysis. We excluded articles from non-Dutch periodicals, articles containing non-relevant information and articles with only tangential coverage of the search terms. We compared data from the first six months of 2009 with those in the same period in 2000. The length and composition of both timeframes depended on practical considerations.

Variables

Point of reference (or ‘frame’). A ‘frame’ or ‘point of reference’ describes the perspective from which a topic is discussed. Frames were operationalized according to the classification of Anne Karpf (8). The ‘medical’ frame is an article with an approach complying a medical view or background. The ‘consumer-oriented’ frame is an approach directed to the perspectives of consumers: patient organizations, patient rights and interests, patient experiences. The ‘self-care centred’ frame covers prevention, individual responsibility, and lifestyle or health education. The ‘contextual’ frame includes political, religious, cultural and historical points of view. The ‘financial-economic’ frame is when the journalist addresses expenses, available budgets and donations. The ‘commercial’ frame includes issues related to profit, e.g. the promotion of new techniques and earning (financial) profit.

Moral judgement: The ‘moral judgment’ that emerges in a paper gives each newspaper article a prevailing tone, which is either ‘positive’, ‘negative’ or ‘neutral’ concerning the main subject of the article (‘priming’). For example, the title of an apparently neutral article about the construction of a new hospice was entitled, ‘Farm makes way for hospice’. This article can be categorized as having a positive moral judgment because it has a positive ethos. If the title had been, ‘Hospice displaces farm’, we categorize it as a negative moral judgment. (See Table I).

Table I. Examples of citations concerning positive and negative moral judgment (‘priming’).

Positive

‘Special words of acknowledgement for a beautiful terminal care’ ‘Terminal care: grateful work’ ‘The Netherlands should certainly not be ashamed for its euthanasia policy’ ‘Terminal care practice worthy of respect’

Negative

‘New euthanasia policy unsuitable, useless and misleading’ ‘Taboos like sex, blasphemy and euthanasia’ ‘Controversial hospice opened yet’ ‘Practice of active euthanasia raises the question: what have we done wrong?’ ‘Fear for silently allowing euthanasia’ ‘Euthanasia is an emotionally burdensome problem, just like immigrants and poverty’ ‘Bad follow-up care: many people need to take care of terminal care themselves’

Assessment criteria

We assessed the selected articles according to the following criteria:

• The source: regional newspaper, national newspaper or opinion magazine.

• The main theme is palliative or terminal care.

• The message about palliative care that the writer attempted to convey.

• The dominant point of reference (‘framing’).

• The moral judgments (‘priming’).

Assessment procedure

Three people performed the assessment: 1 person (RvdB) assessed all articles (n = 485) and 1 person (MRE) re-assessed 21% (n = 104) of the articles taken at random: 11% (n = 16) within period 1 and 26% (n = 88) within period 2. The results of both assessments were compared and differences in assessment were discussed until a mutual understanding and agreement was reached. The problems regarding the assessment, classifications and coding were discussed with the third author of this article. When no mutual agreement was reached, this was noted. Only a very small amount of the articles that MRE assessed did not correspond to the assessment of RvdB. Eventually, agreements were reached for all the few cases where non-concordance appeared initially. This indicates that the assessment done by RvdB alone (79%, n = 381) probably provide similar results compared to the stepwise assessment by both researchers.

Statistical analysis

For statistical analysis we defined four nominal variables: source (regional versus national), year (2000 versus 2009), moral judgment and frame. To test the consistency of the results regarding judgment or frame by source and year we used log linear analysis of frequency tables, which expresses the associations in terms of odds ratios. Furthermore, we used Pearson residuals regarding observed and predicted frequencies to evaluate model fit. To test trends regarding moral judgments between 2000 and 2009, we used a chi-square test.

Results

For the first research period (1 January 2000 to 1 July 2000), the document search resulted in 164 articles. After excluding foreign articles we selected 146 articles for further analysis: 62% regional articles (n = 90), 36% national articles (n = 53), 2% articles from opinion magazines (n = 3). For the second research period (1 January 2009 to 1 July 2009), the document search resulted in 380 articles. After excluding foreign articles and two inappropriate articles, we selected 339 articles for further research: 67% regional articles (n = 227), 28% national articles (n = 96) and 5% articles from opinion magazines (n = 16). Considering the small amount of selected opinion magazines we focused further analysis on the regional and national newspapers. Figures regarding the opinion magazines are reported in the Tables.

Topics

Topics related to dying at home, as mentioned in both regional and national newspapers, included: the opening of a new hospice, information meetings, fund raising activities and award ceremonies. To a lesser degree, announcements regarding legislation, religion and individual stories about either positive or negative experiences with palliative care were recorded. The wide diversity of topics made the assessment of a possible trend in the research period challenging.

In addition, a small percentage (15% and 9% in period 1 and 2, respectively) of the assessed articles included a subject that only partially resembled the theme that we wanted to highlight; for example, subjects such as terminal care and euthanasia in foreign countries or terminal care and euthanasia with animals. In general, we found that these articles showed positive moral judgments.

Points of reference

Table II and Figure 1 show how the points of reference in the selected articles are divided. To summarize, in period 1 the frame of articles in regional newspapers appeared to be predominantly consumer-oriented (66%, n = 65), whereas the national newspapers were predominantly contextual (63%, n = 32). Period 2 mainly showed the consumer-oriented frame; in regional and national newspapers respectively 73% (n = 205) and 55% (n = 67).

Figure 1. Represented framing of palliative and terminal care at home in Dutch printed media: January – June 2000 and January – June 2009.

Table II. ‘Points of reference’ in articles on palliative and terminal care at home in Dutch printed media (January to June 2000 and January to June 2009).

	Points of reference (journalistic frames) of 146 articles (2000) and 339 articles (2009)
	Medical		Consumer-oriented		Self-care		Contextual		Financial-economic		Commercial		Total
Source Year	2000	2009	2000	2009	2000	2009	2000	2009	2000	2009	2000	2009	2000	2009
Regional	–	8	65	205	–	33	25	17	9	18	–	–	99	281
newspapers													68%	83%
National	2	8	16	67	–	21	32	23	1	2	–	–	51	121
newspapers													35%	36%
Opinion	–	1	–	11	–	3	2	2	–	3	–	–	2	20
magazines													1%	6%
Total	2	17	81	283	0	57	59	42	10	23	0	0	152^a	422^a
	1%	5%	55%	83%	0%	17%	40%	12%	7%	7%	0%	0%

^aThe table totals are larger than the number of articles because some articles were written from two frames of reference.

The total number of articles in Table II does not match the number of 146 (period 1) and 339 articles (period 2) used for further analysis because some articles were written from two frames of reference and are mentioned twice in Table II.

A difference between the periods was illustrated by the categories in the initial period, in the year 2000, during which regional articles led with a consumer-oriented frame, while in national articles the approach was predominantly contextual. This focus in national articles shifted in the second period, in which the consumer-oriented frame was dominant in more than half of the articles, whereas the contextual approach disappeared to the background. Moreover, a new frame, self-care centeredness, appeared in the second period and the focus shifted towards a medical frame also in the regional newspapers during the second period. In both national and regional newspapers, in the second period, we noted more attention to the medical and self-care centred frames, a decrease in contextual approach and an increase in the consumer-oriented approach compared to period 1. Comparing 2000 with 2009 there was a diference between the distribution of frames in both national and regional newspapers (deviance goodness of fit = 2.56, df = 4, P = 0.63; all Pearson residuals <2).

Moral judgments

In period 1, with respect to the moral judgment in the regional articles, this was predominantly positive (66%, n = 59) versus 31% (n = 28) negative and 2% (n = 2) neutral. In the national newspapers, this judgment was 58% (n = 31) negative versus 32% (n = 17) positive and 2% (n = 1) neutral. In period 2, the regional articles were mainly positive (76%, n = 172), while 9% (n = 20) had a negative moral judgment and 15% (n = 34) were neutral. The spectre of moral judgment in national articles was 39% (n = 37) negative, 31% (n = 30) neutral and 28% (n = 27) were positive.

Comparison of the moral judgment pattern demonstrated mainly similarities in both periods: a positive moral judgment in regional articles, which increased in frequency within period 2. The number of articles with a negative moral judgment decreased in these newspapers from period 1 to period 2 reflecting a shift towards a neutral priming. In the national newspaper articles, we noticed a largely negative attitude during both periods. In period 2 a shift took place: negative moral judgment remained prevalent although decreasing in a percentage of articles. Similar to articles in regional newspapers, we noticed an increase in neutral moral judgment, and a subsequent decrease in negative moral judgment. Between 2000 and 2009 there was no difference in the distribution of moral judgments regarding national and regional newspapers (deviance goodness of fit = 5.15, df = 3, P = 0.16; all Pearson residuals <2). Overall, in 2009 there was a tendency towards positive moral judgments in both regional and national sources (P < 0.001). (Table III and Figure 2.)

Figure 2. Moral judgement on palliative and terminal care at home in Dutch printed media: January – June 2000 and January – June 2009.

Table III. ‘Moral judgment’ in articles on palliative and terminal care at home in Dutch printed media (January to June 2000 and January to June 2009).

	Moral judgment in 146 articles (2000) and 339 articles (2009)
	Positive		Negative		Neutral		Metaphor		Total
Source Year	2000	2009	2000	2009	2000	2009	2000	2009	2000	2009
Regional	59	172	28	20	2	34	1	1	90	227
newspapers									62%	67%
National	17	27	31	37	1	30	4	2	53	96
newspapers									36%	28%
Opinion	–	12	2	–	–	2	1	2	3	16
magazines									2%	5%
Total	76	211	61	57	3	66	6	5	146	339
	52%	62%	42%	17%	2%	19%	4%	1%	100%	100%

Metaphorical language

Metaphorical language appeared in a small percentage of the selected articles (4% of articles in period 1 and 1% of articles in period 2) and was prevalent mainly in national newspapers. All of these articles used metaphorical language with a negative moral judgment, for example, comparing the bankruptcy of a company with ‘a hopeless situation in only which terminal care or euthanasia could provide a solution’.

Discussion

Main results

The results of this study demonstrate some trends in Dutch national and regional newspapers that may be indicative but need further comparison with respect to media, time frame and geographical contexts. In 2009 the theme of terminal care at home seemed to appear more than twice as often as in 2000; regional newspapers in particular showed an increase in the number of articles on the subject. In addition, in 2009 the diversity in framing was more prominent, and the moral judgment was more positive than in 2000. The type of publication—regional versus national—influenced the depth and nature of the focus on palliative and terminal care. In both periods of research, the regional newspapers provided coverage of the subject with a prominently positive moral judgment. Conversely, the national newspapers mainly expressed a negative moral judgment. This trend continued in the second period, during which both regional articles and national articles shifted toward a neutral or positive moral judgment.

Strengths and limitations

Bias in article selection using the LexisNexis database is possible for both study periods, but it is not probable that the potential bias was robust enough to influence the general trends of qualitative nature.

Interpretation

We analysed two distinct timeframes to identify changes in the media's coverage over a nine-year period. These possible changes indicate how the public opinion about palliative care is changing. The move to more neutral writing concerning palliative care in 2009 compared to 2000, could be explained by the fact that in 2000 palliative care was a new subject in Dutch society. The years in which palliative care developed since then, made the possibilities and advantages of this type of care much more accepted in Dutch society.

Implications for practice

General practitioners should realize that the portrayal of terminal and palliative care at home, offered to their patients, may be influenced by the framing and priming effects of newspapers. As to the Dutch situation, this portrayal depends on the type of newspaper: regional or national. In other countries, the media focus on survival, end-of-life discussions are seldom found (9,10).

The trends found in this research can help general practitioners or other primary care providers to adjust to a changing public opinion towards palliative care. This gives them a better understanding of the wishes of their patients and endorses mutual cooperation. This may help to reduce possible communication problems during the palliative phase.

Declaration of interest: The authors, R. Van den Berg, M. R. Eliel and F. J. Meijman take full responsibility for the content of the paper. There are no ethical approval(s), no source(s) of funding and no conflict of interest.