Age-based disparities in end-of-life decisions in Belgium: a population-based death certificate survey

Life expectancy in developed countries has risen considerably during the last century [1, 2]. This has had a profound impact on the age distribution of populations: the number and proportion of elderly people is steadily rising and is projected to increase further. The ‘baby boom generation’ born after WWII is reaching old age. The proportion of elderly people among decedents is also rising; in Belgium (Flanders) the proportion of those dying aged 80 or over has recently reached 50% [3].

As death nowadays mostly follows from chronic and degenerative disease with a prolonged dying process rather than from acute infectious disease, care provision in the end stages of life has become of great interest to patients, health care workers and national health care systems. A growing body of scientific literature shows that provision of end-of-life care can vary between patients of different ages [4‐11]. Older patients have been reported to have less access to specialist or palliative care and to receive adequate pain and symptom treatment less often [4, 11], to have life-prolonging treatment forgone more often [8, 11‐14], to have do not resuscitate and do not hospitalise orders more often [8, 15‐17], and to be excluded from decision making more often [11, 18, 19]. Also, research has found that physicians and patients’ family are less inclined to continue or intensify end-of-life treatment in older than in younger patients [4, 20, 21]. Patients themselves may also base decisions concerning their treatment partly on whether they have lived a long and fulfilling life [11, 14, 20, 22]. These findings thus indicate significant differences or inequalities between different ages when it comes to end-of-life care and decision making. This is of great importance to health care policy makers as it may imply inequitable distribution of scarce medical resources [15, 23].

So, elderly patients are generally viewed as being more vulnerable to exclusion of due care. Many opponents of legalised euthanasia warn of a ‘slippery slope’ towards more unethical practice among vulnerable patient groups such as older patients. These critics predict a rise in life ending without explicit request from the patient in general, and especially in elderly patient groups, in countries where euthanasia is legally regulated [24, 25].

In this report we investigate age-related disparities in end-of-life decisions (ELDs) with a possible or certain life shortening effect in Flanders, Belgium in 2007. The studied decisions are intensified drug administration for pain and other symptoms in doses with life shortening as possible effect, decisions to withdraw or withhold potentially life-prolonging treatment and physician-assisted dying ie the prescribing, supplying or administering of lethal drugs (ie euthanasia, physician-assisted suicide and life ending acts without explicit patient request). Belgium is one of only three countries in the world where euthanasia is legal (since 2002) under strict conditions [26]. In order to establish whether the ‘slippery slope’ argument holds true, particularly for the supposedly vulnerable old, data presented from the 2007 survey will be supplemented where necessary with data from an identical survey conducted in 1998, before the euthanasia law was passed. We pose the following research questions: 1) are there differences in 2007 in the incidence of the various end-of-life decisions across age groups 2) what are the incidence shifts between 1998 and 2007 in the different age groups 3) what is the preceding decision making process and 4) does the formulation and granting of euthanasia requests differ in incidence across age groups.

This study found a number of differences between age groups in end-of-life decision making. In 2007 the incidence of intensified pain and symptom treatment and also of euthanasia and assisted suicide decreased significantly with increasing age, but not after multivariate testing with a number of confounders. Comparing 2007 with 1998, decisions to intensify alleviation of pain and symptoms, not to treat, and to perform euthanasia or assisted suicide were more likely to have been made for intensified pain and symptom alleviation in all age groups, for non-treatment decisions in patients aged 65 or over and for euthanasia and assisted suicide only in the 65–79 age group. Alleviation of pain and symptoms with a co-intention to hasten death occurred less often in 2007 than in 1998 in all age groups whereas non-treatment decisions with explicitly intended life shortening were less likely only for the oldest age group and life ending without explicit request less likely only for patients younger than 80 years. As concerns decision making with the patient in 2007 this was more often done with younger patients for intensified alleviation of pain and symptoms. For such decisions a palliative care specialist was less often involved when the patient was 80 years or older while the opposite was found for non-treatment decisions. Lastly, in 2007 the rate of euthanasia requests decreased with increasing age and the oldest patients saw their request rejected more often, though this latter finding was not significant after multivariate testing.

Though the occurrence of the various ELDs in 2007 was not directly influenced by patient age, we did find a bivariate (negative) association of age with intensified pain and symptom alleviation and with euthanasia/assisted suicide. It is well known that older patients have different socio-demographic and clinical profiles from younger ones, as Table 1 shows. The main diagnosis and place of death seemed to be the factors determining the likelihood of an end-of-life decision. This does not however mean that there is no problem related to age. The reality remains that older patients are less likely to receive intensified pain and symptom treatment in the context of palliative care, something which is confirmed by the higher levels of consultation of palliative care experts for younger patient groups and which is consistent with earlier studies [8, 29]. This is probably because elderly patients die from cancer relatively infrequently and palliative care is historically provided mainly to cancer patients [30‐32]as the cancer trajectory is more predictable [2, 30, 33]. Generally, policy should aim at taking away barriers to equality between ages independently of diagnosis. Patients of all ages should be entitled to the same intensity and quality of care. If provision of palliative care is expanded to patients with non-malignant diagnoses, something which is widely advocated [30, 32, 33], the differences between age groups, and specifically the ‘undertreatment’ of the oldest, should disappear. This is of course assuming that the lower incidence of pain and symptom alleviation in older patients is a sign of undertreatment; hypotheses explaining the age disparity in palliative care consumption include the suggestion that pain and other symptoms are less often recognised in elderly patients [8, 21, 34], that elderly patients are less able to report them [16, 33] or that they have learned to cope with long-term pain [35, 36]. These hypotheses seem to be disproved by our data; the issue should be investigated more deeply.

As concerns euthanasia and assisted suicide, it is not possible to make qualitative/moral judgments on the effect of age on occurrence, which in our multivariate model was explained by differences between cancer and non-cancer diagnosis. What we know is that there is more acceptance of euthanasia among younger generations [37]. Our finding that older patient groups request euthanasia less often than do younger groups corroborates this. This can be related to generational effects and also to differences in educational attainment [38]. Unfortunately, the latter factor could not be included in the analysis. It is significant, however, that there is no age-based difference in the proportion of requests granted. Our study did find a bivariate relationship ie fewer requests granted in the 80+ age group than in younger groups, but this disappeared after multivariate testing again due to differences between cancer and non-cancer diagnosis. So it seems that non-cancer patients are less likely to have their request for euthanasia granted. This is not problematic per se as the Belgian euthanasia law prescribes rigorous criteria for eligibility [26], and these criteria are thought to be less easily confirmed in non-cancer patients. Indeed, because legal criteria such as ‘unbearable suffering’ are so difficult to define in practice, cancer patients may be viewed as the ‘ideal’ euthanasia patient against which euthanasia requests from non-cancer patients are compared and often deemed insufficiently in accordance with the euthanasia law [39]. However, euthanasia among cancer patients may be socially more acceptable making physicians more reluctant to grant euthanasia to non-cancer patients. If this is the case then the difference between the options available to cancer and non-cancer patients becomes problematic. More research is needed to elucidate this.

One finding that is not in line with previous research [8, 12, 13] is that the incidence of non-treatment decisions does not increase with age; if anything, our analyses show a tendency towards fewer decisions to forgo life-sustaining or life-saving treatment as age increases, particularly where the hastening of death is explicitly intended. Many studies suggest that considerations of age may come into play when deciding whether to initiate or continue treatment at the end of life, in surveys of both attitudes and actual practice [8, 11‐14]. In Flanders, Belgium, this phenomenon seems nonexistent or marginal at most. In past studies in Belgium (and elsewhere) using the same method we did find age differences in incidence of non-treatment decisions, but this is because we included only the most important ELD for each case [3, 27]. When analysing cases permitting more than one ELD per case, we find no age differences in NTD incidence. Further research could study whether different types of non-treatment decisions (medication, hydration/nutrition, CPR, respiration, oncotherapy, surgery, dialysis) have divergent frequencies in various age groups.

Though age may not be a determining factor in the incidence of end-of-life decisions, it is all the more important in decision making. The older the patient, the less often he or she is involved in decision making to intensify pain and symptom alleviation, and the less likely he or she is to explicitly request it. This confirms the findings of other studies which offer relevant explanatory hypotheses of lower assertiveness or empowerment and less aspiration to autonomy in older patients [11, 18]. Elderly patients often put all faith in the physician, who is viewed as the expert as well as the moral authority in what is perceived as a hierarchical relationship [18, 40]. Elderly patients were in our study also more frequently found to be lacking in capacity to be involved in end-of-life decision making. As consensus continues to grow that respecting the patient’s wishes is paramount in these decisions [14, 15, 19, 32], the need for advance care planning, or at least an exploration of preferences before the patient loses capacity is thus very clear, particularly in the oldest patient groups [2, 19, 41]. Save for non-treatment decisions, the inclusion rate of older patients in end-of-life decisions has not significantly increased since 1998. Additionally, we found no accompanying higher rate of family inclusion or consultation of colleagues or nurses in decision making in older patients than there had been a decade earlier. It is thus warranted to conclude that older patients are at higher risk of paternalism. Advance care planning initiatives need to target the oldest patient population specifically.

What emerges clearly from our findings is that there is no evidence to support the slippery slope hypothesis [24, 25] in elderly patients, let alone in general. Life ending acts without explicit patient request have not risen in incidence since the enactment of the euthanasia law; to the contrary, LAWER incidence has decreased significantly since 1998 in the age groups below 80 years though in the oldest patients the rate has remained the same. Also elderly patients are not more at risk of LAWER than younger patients in 2007. Our findings thus do not confirm the ‘slippery slope’ hypothesis either in general or in elderly patients. It is, however, noteworthy that the LAWER rate has remained stagnant since 1998 in the oldest age group while it is declining in younger age groups. This may be an indication of persistent paternalism in decision making for elderly patients, and further argument for focusing advance care initiatives on the oldest. The development of the incidence of a controversial decision like LAWER in older patients needs to be closely monitored, as adverse effects could only become apparent after a longer period of legalised euthanasia.

There are a number of limitations inherent in this study. Given the length of time between the death in question and completing the questionnaire, we cannot exclude the influence of memory bias in the reporting physicians. Also, our survey includes only the perspective of the treating physicians and not those of relatives or other caregivers. The more than 40% non-response rate may have generated bias in the results, although the data were weighted to correct for this. As our study depends on a conceptualisation of reality, the classification scheme of ELDs as approximation may not fully reflect actual practices and ignore the complexity of end-of-life decision making. Furthermore, although we have information on the process of decision making, we do not know what the discussion outcomes were. Finally, we could not include in the analyses the patient’s educational attainment as confounder to age due to the high proportion of missing cases, although this may be an important determining factor in end-of-life decision making.

We conclude that age is not a determining factor in the rate of end-of-life decisions, but plays a role in the preceding decision making process. Whereas the rates of non-treatment decisions and life ending without request do not differ between age groups, those of intensified pain and symptom alleviation and euthanasia/assisted suicide requests do but are determined predominantly by diagnosis ie cancer/non-cancer. Conversely, patient involvement in decision making ís determined by patient age independently of other factors and this suggests the need for a focus on advance care planning initiatives for elderly patients. Comparison with data from before Belgian euthanasia regulation yielded no evidence of a ‘slippery slope’ as fewer LAWER cases were reported since the euthanasia law. Nonetheless this needs to be monitored closely in the future.