Is educational attainment related to end-of-life decision-making? A large post-mortem survey in Belgium

Socio-economic status has been consistently identified as a significant contributor to differences in use, access and quality of health care [1, 2]. Social background, occupation, income and education –indicators of overall socio-economic status – are thought to influence both the patient’s inclination to seek proper preventive and treatment care and how the health care system treats its patients [3, 4]. This is contradictory to the widely held principle of equal access to and distribution of public health care regardless of social, cultural or economic factors [5].

One area of medical care which has been scarcely studied for socio-economic differences and possible inequalities is end-of-life care, particularly decision-making at the end of life. In this paper we survey the relationship between educational attainment and the occurrence and decision-making process of end-of-life decisions with a possible or certain life-shortening effect (ELDs) in Flanders, Belgium. ELDs are subdivided into intensified alleviation of pain and symptoms, non-treatment decisions, euthanasia/physician-assisted suicide and life-ending acts without explicit request.

Euthanasia, ie administration of lethal drugs with the explicit intention of hastening death at the explicit request of the incurable patient, was decriminalised in Belgium in 2002 under strict legal terms [6]. Sceptics anticipate this will lead to the violation of the rights particularly of vulnerable patient groups, ic the least educated, resulting in disproportionately more non-voluntary “mercy killing” in these patients (termed the slippery slope argument) [7–9]. Following the euthanasia law, laws on patient rights and on palliative care were also passed in 2002. In short, the Law on Patient Rights prescribes quality health service to all patients, including the right to information about treatment and informed consent [10]. The Law on Palliative Care ordained that every patient has the right to adequate palliative care at the end of life [11]. Within these laws is embedded the principle of equality in health care, applicable to the end of life. But do these laws actually achieve equality – ic between educational groups – in end-of-life care?

The specific research questions are the following: 1) are there differences in the prevalence of ELDs between educational groups?; 2) are there differences in the decision-making process (patient, family and caregivers) and end-of-life treatment between educational groups?

In explaining the impact of educational attainment on health-related outcomes, mediating factors such as material and (psycho)social resources are cited [12, 13], but also specific cultural resources (values, attitudes, beliefs, knowledge, skills, communication competencies, empowerment, self-advocacy and self-determination) have been posited as being important [14–16]. All these factors may influence the frequency and manner in which ELDs are made and lead to inequalities between educational groups.

Scientific literature has either identified or predicted a number of inequalities in end-of-life care and decision-making according to educational level. Following hypotheses are relevant to this study: a) euthanasia will be more prevalent among the higher educated [17–19] given their higher degree of acceptance [20] and tendency towards more self-determination and autonomy [14–16]; b) life-ending acts without explicit request will be more frequent among the least educated (ie the slippery slope hypothesis) [7–9]; c) due to less desired aggressiveness of treatment at the end of life, highly educated patients will more often forgo life prolonging treatment [21–23]; d) supposing better competencies, communication skills, knowledge of their rights and more appeal to autonomy, highly educated patients and their families will be more often involved in decision-making [24–28]; and e) through this higher degree of involvement and self-advocacy, highly educated patients may achieve better palliative treatment of pain and symptoms [28, 29].

This study found a number of differences in end-of-life decision-making between educational groups, both in the occurrence and in the decision-making process. The hypotheses formulated at the outset of this paper can be carefully scrutinised using presented data.

The first hypothesis expected that euthanasia is more prevalent among highly educated patients given their more positive attitude towards euthanasia and tendency to self-determination and autonomy [14–20]. We indeed found a higher prevalence of euthanasia performance and requests in higher educated patients, adjusted for age and sex. Though the association was strong, it largely disappeared in multivariate analysis with cause of death (cancer) as principal confounder. As Table 1 showed, the higher educated groups died more often with cancer than the lower educated. Cancer has in previous studies been found to be strongly associated with euthanasia because it is characterized by a high and often unbearable symptom burden and a relatively predictable end-of-life trajectory compared to for instance cardiovascular or respiratory disease, allowing for better anticipation of deteriorating functional status [31]. In any case, in this and previous studies educational level was not found to affect euthanasia prevalence unequivocally [18, 19, 32, 33]; the hypothesis and underlying rationale are not conclusively confirmed here. However, the lack of an unambiguous independent effect may be due to the low number of patients. The idea of education and particularly accompanying attitudes and competencies influencing euthanasia prevalence should not be abandoned.

The second hypothesis that problematic life-ending acts without explicit request will be found more often in the least educated [7–9] was not confirmed by our results. The prevalence and odds ratios did not differ significantly between educational groups. Also other ELDs that could be regarded unethical, ie where the physician reported a life-shortening intent in intensified alleviation of pain and symptoms or non-treatment decisions, were not found more often in the least educated, rather to the contrary. The data thus seem to contradict the ‘slippery slope’ hypothesis that physician assisted dying, once regulated, will disproportionately affect vulnerable patient groups negatively [7–9], and corroborates other studies in countries with euthanasia regulation [33–36]. If anything, trend studies before and after legalisation have shown that end-of-life practice has generally improved since legalisation, without reported inequalities for any of the supposed vulnerable groups [33–35]. However, as adverse effects may only become noticeable after some time or the effect may be more subtle, it is necessary to continue monitoring these highly controversial decisions.

In our third hypothesis we expected non-treatment decisions to occur more often in the highest educated due to their lower inclination towards aggressive end-of-life treatment [21–23]. The tendency was indeed towards more withheld/withdrawn treatment in the highest educated group compared to the lowest educated group. One could expect that the higher educated generally demand more comprehensive treatment when ill, but at the end of life when cure is no longer expected, this is not the case. Although we have no information on the motivations of the patients this difference could be related to the higher educated groups being more concerned with self-determination and control over the end of life. There can also be an influence of a higher degree of assertiveness to go against physicians’ recommendations to exhaust life-prolonging treatment options. Indeed, prior research found more use of palliative care services [28] and more advance care planning [24, 37, 38] in the higher educated. Future studies should investigate these explanations further, and perhaps differentiate between the types of forgone treatments (eg mechanical ventilation, CPR, antibiotics, hydration and tube feeding, etc.).

The fourth hypothesis predicted a higher degree of patient involvement in end-of-life decision-making for the higher educated [24–28]. This relationship could be seen in the age and sex adjusted analyses of intensified alleviation of pain and symptoms and non-treatment decisions but disappeared when controlling for other confounders. However, looking at discussion with either patient or family, we did see an independent effect of education, hinting toward more communication, better competencies, less “distance of power” and less paternalism in the higher educated [24–28, 38]. Higher educated patients are thought to be better able to speak in a proto-professionalised manner, which appeals more to their physicians [39]. Lower educated patients may prefer not to be included in making such difficult decisions and rather trust to their physician’s judgment.

Another striking finding is that physicians consulted with colleagues about ELDs more often when it concerned higher educated patients. Perhaps discussion with patient and family prompts physicians to consult with colleagues, as especially highly educated patients may demand a thoroughly substantiated discourse, with more than one physician and professional opinion. Or possibly the mere awareness or perception of a patient being higher educated and more empowered may cause physicians to conduct the decision-making process more thoroughly.

Our fifth and final hypothesis, predicting better palliative treatment of pain and symptoms for the higher educated [28, 29], also seems to be reflected in the data: though no difference was found in the palliative treatment goal in the last week, highly educated patients more often received opioids in the final 24 hours than did lowly educated patients, and their pain and symptom treatment is more often intensified to the point that life-shortening is accepted. As these results are controlled for sociodemographic and clinical characteristics, the explanation is likely to lie within the physician-patient relationship, more specifically in the previously mentioned competence in higher educated patients to be self-advocating and to better voice their needs and preferences. This finding is again cause for concern as it implies a difference in quality of end-of-life care between educational groups.

Some study limitations have to be taken into account. First, the education variable had many missing cases (27.6%), which strongly reduced the statistical power of the analyses, but probably did not impact the representativeness of the results. Second, we have no information about patients’ preferences and the contents of end-of-life discussions, which may differ across educational groups [40] and could have provided invaluable insight into the found differences.

From our data an overall picture emerges that patients’ education has a significant influence on their end-of-life care and decision-making processes. We have explained this through mediating factors often referred to as “cultural resources” or “cultural capital” [14–16]: patients with a higher educational attainment are thought to be more empowered, assertive and self-advocating, putting more emphasis on self-determination and control over the end of life, and being more insistent on thorough end-of-life care and decision-making. They are also projected to have better knowledge, skills and communication competencies to enforce these wishes. Health policy should address this issue and sensitise health care workers about legal patient rights requirements. Physicians should be encouraged to involve patients who are less empowered. In situations where patients do not initiate discussions themselves, physicians should be the ones to take the first step. These findings complement other research uncovering health-related differences based on educational attainment through other mechanisms such as material, (psycho)social and behavioural differences [12, 13].

We conclude that there are some important differences and possible inequities between educational groups in end-of-life decision-making in Belgium. Future research should focus on a better understanding of the detailed causes and reasons of these differences.