Abstract

Background: Provision of adequate care for the oldest old is increasingly crucial, given the current ageing trends. This study explores differences in end-of-life care of the oldest (≥85 years) versus the younger (65–84 years) old; testing the hypothesis that age could be an independent correlate of receiving specialised palliative care services (SPCS), having palliative-centred treatment and dying in a preferred place.

Methods: general practitioners (GPs) participating in the nation-wide representative network in the Netherlands were asked to fill in patient, illness and care characteristics of all registered patients ≥65 years, who died non-suddenly in their practices between 2005 and2008, using standardised forms. Associations with the palliative care variables were tested using multiple logistic regression.

Results: nine hundred and ninety patients were registered. Among the oldest old, there were more women than men, more patients with heart failure than cancer, less hospital and home deaths and more residential care home deaths compared with the younger old. Of the oldest old, fewer received SPCS and more preferred to die in a residential care home than the younger old. Age was independently associated with palliative care provided: compared with the younger group, the oldest old received SPCS less often (OR = 0.7) and were treated with a palliative-centred goal more often (OR = 2.4); but age was not related to dying in a preferred place, i.e. independent of other characteristics.

Conclusion: this study shows age to be independently associated with receiving SPCS in the Dutch community. Although the GPs do recognise the ‘palliative phase’ in the oldest old, involvement of specialist teams is somewhat less.

Introduction

In this paper, we explore some aspects of end-of-life care of the oldest of old (people ≥85 years). Adequate care provision for the oldest of old has become crucial, given the current ageing [1] and chronic morbidity trends [2]. In response to rapidly growing demands for end-of-life care [3], healthcare systems are adapting to meet patient-specific needs [4]. The underlying goal of palliative care remains the attainment of the best possible quality of life for patients throughout the entire duration of their illness, irrespective of age [2]. General practitioners (GPs) manage the care of older resident persons in most communities, alongside geriatricians and specialists who are involved in institutionalised care [4–6]. It is possible that certain demographic or care-related characteristics of these patients could be associated with their likelihood of receiving palliative care before death [7, 8]. For instance, age could influence a patient's ability to access specialised palliative care services (SPCS) [7, 9–12], their readiness to acknowledge or discuss death [13], and their wish to die either at home [14] or in a hospital [15]. Past studies were unable to effectively generate reasons for the variability in use of SPCS [7, 11]. Previously, research had focused mainly on older people residing in specialised settings [16–18], with specific diagnoses [13, 19], somewhat overlooking the substantial proportion of older people in the community, dying from other causes [20, 21].

In 2006, about half of all deaths in the Netherlands were of people over 80 years, several of whom had chronic incurable illnesses [20, 21]. Of the 135,000 deaths that year, 38% occurred at home or residential-care home and 23% in a specialist nursing home [20, 21]. The Dutch healthcare system is arranged such that 95% of the entire community is compulsorily registered with one GP, who serves as a gate-keeper to the health system [5]. In the absence of a distinct ‘palliative care’ speciality, the Dutch government enhances the palliative care expertise of her GPs [22] through periodic training [23] and initiatives that involve specially accredited and experienced practitioners, available to all GPs and patients, via telephone or at the patient's bedside [22–24].

This study explores differences in patient, illness and care characteristics, between the oldest (≥85 years) and younger old (65–84 years) in the Dutch community. In addition, we will test the hypothesis: ‘age is related to three aspects of palliative care: (1) use of SPCS, (2) care mainly aimed at palliation or comfort and (3) dying in the patient's preferred place’. In studying age and access to services, Burt and Raine [11] say that care needs should be taken into account. Also, the literature suggests that age could be related to certain factors, despite being related to diagnosis and co-morbidities [7, 9, 10]. To illustrate this further, Burge et al. [12], in a retrospective study on cancer patients, used cancer and co-morbidities as proxies for needs and registration on community-based specialised programmes as outcome measures. In this study, we will use a similar step to explain the reasons behind differences that may be present.

Methods

Study design and population

The Senti-MELC study (Sentinel network Monitoring End-of-Life Care) is a mortality follow-back study monitoring end-of-life patient care through continuous GP registration [25, 26]. In the Netherlands, data were collected from 1 January 2005 to 31 December 2008, via the Sentinel Network of GPs, and this process was supervised by the Netherlands Institute of Health Services Research (NIVEL). The Network, consisting on average of 67 regularly participating GPs, covers ∼1% of the total registered patient population [27]. The GPs are representative of all GPs in the Netherlands, and participation rate over the 4-year period (2005–8) was 75–85%. Following a patient's death, the GP was asked to provide information about the care the patient received in the last 3 months of life. Completed forms were returned to NIVEL, where they were scrutinised for missing data and errors, and then sent to the researchers for analyses. Given the focus in this study, we excluded patients under 65 years, all those whose deaths were judged sudden by the GPs, and all entries with multiple missing data. We selected all patients who in the last year of life had lived mainly at home or in a residential care home (n = 990).

Definition of concepts

Based on a pre-existing internationally validated framework [28], we explored the last 3 months of life in the ‘terminally ill’ and whose deaths were foreseen by their GPs. Prior to registration, the forms had been piloted and rigorously tested to ensure the GPs understood the items as we intended them. The term ‘co-morbidity’ was applied when more than one major chronic illness was present. A SPCS was defined as (i) a GP with palliative care training operating in a team, (ii) a palliative care consultant (trained nurse or physician) operating in a team, (iii) hospital-based palliative care units, (iv) specialist nursing-home-based palliative care units or (v) a hospice day-care facility, all of which are readily accessible to terminally ill patients in the Netherlands. ‘Aim of care’ in the last week of life was measured by asking the GPs for the main treatment goal (curative, life prolonging or palliation). ‘Dying in a preferred place’ was assessed in two steps. First, we asked the GPs for each patient's preferred place of death (as relayed by patient, a relative or other care provider), and then we asked for the actual place of death (from GP records). A detailed description of the SENTI-MELC study methodology, as it applies to the Netherlands, is published elsewhere [26].

Measurement instrument

Using a two-paged registration form, we measured certain patient, illness and care-related characteristics, i.e. age, gender; cause of death as registered in the death certificate, main treatment goal in the last week of life, whether SPCS was used in the last 3 months of life (yes/no); whether GP was aware of patient's preferred place of death (yes/no); source of GP's awareness (patient/relative/other care provider—specify) and patient's actual place of death (home/residential care home/specialist nursing home/hospice or palliative care unit/other).

Statistical analysis

Data were analysed using the Statistical Package for the Social Sciences version 15.0. The characteristics were compared across age subgroups using Pearson's χ2. To test whether age was independently related to the three palliative aspects (use of SPCS, care is mainly aimed at palliation and dying in the patient's preferred place), multiple logistic regression analyses were used. Variables were entered into the equation using the conditional backward elimination of independent variables method. To avoid erratic results, we applied Peduzzi et al.'s [29] recommendation of EPV > 10 (events per variable). From our analyses, EPV was 27 and 12.9 (Tables 1 and 2, respectively). In addition, we tested for possible interaction effects, so as to rule out the possible moderation of the associated factors by age.

Table 1.

Differences in age and other characteristics associated with using SPCS in the last three months of life ( =  990)a

Variable Proportion that used SPCSa (column %)
 
 Yes, n = 351 No, n = 631 β Standard error Odds ratio for using SPCS or not (95% CI)b 
Age 
 65–84 years 66 53   
 ≥85 years 34 47 −0.341 0.164 0.711 (0.520.98) 
Gender 
 Female 49 51   
 Male 51 49 −0.042 0.152 0.959 (0.71–1.29) 
Cause of death 
 Cancer 43 26   
 Heart failure 12 20 −0.854 0.237 0.426 (0.270.68) 
 COPD −0.495 0.298 0.610 (0.34–1.10) 
 Stroke 10 10 −0.520 0.275 0.594 (0.35–1.02) 
 All others 27 36 −0.658 0.192 0.518 (0.360.75) 
Presence of a co-morbidity 
 Yes 45 46   
 No 55 54 −0.218 0.156 0.804 (0.59–1.09) 
Palliation/comfort-focused treatment 
 Yes 87 81   
 No 13 19 −0.087 0.224 0.917 (0.59–1.42) 
Variable Proportion that used SPCSa (column %)
 
 Yes, n = 351 No, n = 631 β Standard error Odds ratio for using SPCS or not (95% CI)b 
Age 
 65–84 years 66 53   
 ≥85 years 34 47 −0.341 0.164 0.711 (0.520.98) 
Gender 
 Female 49 51   
 Male 51 49 −0.042 0.152 0.959 (0.71–1.29) 
Cause of death 
 Cancer 43 26   
 Heart failure 12 20 −0.854 0.237 0.426 (0.270.68) 
 COPD −0.495 0.298 0.610 (0.34–1.10) 
 Stroke 10 10 −0.520 0.275 0.594 (0.35–1.02) 
 All others 27 36 −0.658 0.192 0.518 (0.360.75) 
Presence of a co-morbidity 
 Yes 45 46   
 No 55 54 −0.218 0.156 0.804 (0.59–1.09) 
Palliation/comfort-focused treatment 
 Yes 87 81   
 No 13 19 −0.087 0.224 0.917 (0.59–1.42) 

Variables entered into the equation were either significant in the univariate analyses or prompted through research: age, gender, cause of death, co-morbidity, received palliation/comfort-focused treatment, hospital admission in the last week of life. Other interaction effects (involving age * gender; age * cause of death; age * co-morbidity, age * hospital admission in the last week of life) were not significant. Model summary results: Nagelkerke R2 = 0.053. Percentage correctly predicted = 63%. Odds ratio with significant results in bold.

aMultiple logistic regression analyses for using SPCS in the last 3 months of life (n = 351) versus not (n = 631).

bProportion missing: 0.8–1.6%.

Table 2.

Differences in age and other characteristics associated with receiving palliation/comfort-focused treatment in the last week of life (n = 990)a

Variable Proportion receiving palliation/comfort-focused treatment in the last week of lifea (column %)
 
 Yes, n = 807 No, n = 167 β Standard error Odds ratio for having PC goal or not (95% CI)b 
Age 
 65–84 years 56 64   
 ≥85 years 44 36 0.877 0.271 2.41 (1.41–4.09) 
Gender 
 Female 51 48   
 Male 49 52 0.083 0.239 1.087 (0.68–1.74) 
Cause of death 
 Cancer 36 16   
 Heart failure 15 24 −1.337 0.303 0.263 (0.15–0.48) 
 COPD 12 −1.441 0.354 0.237 (0.12–0.47) 
 Stroke 10 −0.696 0.400 0.498 (0.23–1.10) 
 All others 31 41 −1.293 0.270 0.275 (0.16–0.47) 
Presence of a co-morbidity 
 Yes 45 51   
 No 55 49 0.075 0.194 1.078 (0.74–1.58) 
SPCS used 
 Yes 37 27   
 No 63 73 −0.277 0.204 0.758 (0.51–1.13) 
Variable Proportion receiving palliation/comfort-focused treatment in the last week of lifea (column %)
 
 Yes, n = 807 No, n = 167 β Standard error Odds ratio for having PC goal or not (95% CI)b 
Age 
 65–84 years 56 64   
 ≥85 years 44 36 0.877 0.271 2.41 (1.41–4.09) 
Gender 
 Female 51 48   
 Male 49 52 0.083 0.239 1.087 (0.68–1.74) 
Cause of death 
 Cancer 36 16   
 Heart failure 15 24 −1.337 0.303 0.263 (0.15–0.48) 
 COPD 12 −1.441 0.354 0.237 (0.12–0.47) 
 Stroke 10 −0.696 0.400 0.498 (0.23–1.10) 
 All others 31 41 −1.293 0.270 0.275 (0.16–0.47) 
Presence of a co-morbidity 
 Yes 45 51   
 No 55 49 0.075 0.194 1.078 (0.74–1.58) 
SPCS used 
 Yes 37 27   
 No 63 73 −0.277 0.204 0.758 (0.51–1.13) 

Odds ratio with significant results in bold. Variables entered into the equation were either significant in the univariate analyses or prompted through research: age, gender, cause of death, co-morbidity, SPCS used, age * gender. Other interaction effects (involving: age * gender; age * cause of death; age * co-morbidity) were not significant. Model summary results: Nagelkerke R2 = 0.086. Percentage correctly predicted = 83%.

aMultiple logistic regression analyses for receiving palliation/comfort-focused treatment in the last week of life (n = 807) versus not (n = 167).

bProportion missing: 0.8–1.6%.

Ethical considerations

An approval from the Ethical Review Board was not required for this study in the Netherlands due to the (post-mortem) nature of the data collection process.

Results

The GPs registered 990 patients, aged 65–104, with 82.2 mean age and SD: 9. Among the oldest old, the women were twice the proportion of men, while among the younger old, the men were twice the women. Cancer ranked second as a singular cause of death, after heart failure among the oldest old, but was the commonest cause of death among the younger old (23 versus 45%). Six per cent of the oldest old did not die of a registered pathology. The residential-care home versus home was most frequently the preferred place of death among the oldest versus younger old, respectively. Hospitalisations in the last week of life were relatively fewer amongst the oldest old (25 versus 37%). The use of SPCS in the last 3 months of life was relatively less frequent among the oldest, compared with the younger old (78 versus 56%). Palliation was mainly used as a form of treatment in both age groups in the last week of life (84–87%), and about 60% of both subgroups had GPs who were informed of their preferred death place.

Factors associated with using SPCS, receiving palliation-focused treatment and dying in a preferred place

Table 1 shows the odds of using SPCS as being 1.5 times less frequent, among the oldest than the younger old. Cancer was the single most-frequent cause of death, and the odds of using SPCS were 2.5 times more for cancer than for heart failure patients. Having used SPCS, the chance of having terminal hospitalisation in the week of life was 0.7 times that of dying in other settings. The odds of receiving treatment focused on palliation in the last week were 2.5 times more among the oldest old (Table 2). The single most-frequent reason for receiving palliation-focused treatment in the last week was ‘cancer’, and patients with other illnesses combined were four times less likely to receive mainly palliation in their last week of life. Since age and dying in a preferred place were not related in the univariate analyses, there was no basis for further logistic regression (Table 3). About 5% of the variance of SPCS use, and 9% of palliative-centred treatment, was accounted for.

Table 3.

Patient and care characteristics of patients studied, by age group (n  =  990)

Variable Total, n (%) 65–84 years, n (%) ≥85 years, n (%) P-valuea 
 990 (100) 570 (58) 420 (42)  
Gender 
 Male 460 (50) 328 (62) 130 (33) 0.001 
 Female 462 (50) 201 (38) 259 (67)  
Cause of death 
 Cancer 320 (32) 254 (45) 66 (16) 0.001 
 Heart failure 166 (17) 70 (12) 96 (23)  
 Stroke 96 (10) 44 (8) 52 (12)  
 Chronic obstructive pulmonary disease (COPD) 80 (8) 52 (9) 28 (7)  
 Nervous system 37 (4) 13 (2) 24 (6)  
 Old age 24 (3) 24 (6)  
 Euthanasia 14 (1) 11 (2) 3 (1)  
 Others combinedb 249 (25) 122 (23) 127 (30)  
Reported co-morbidityc 
 Yes 449 (45) 248 (43) 201 (48) 0.219 
 No 537 (55) 318 (56) 219 (52)  
Main treatment goal in the last week of life 
 Curative 68 (7) 40 (7) 28 (7) 0.571 
 Life-prolonging 45 (5) 28 (5) 17 (4)  
 Palliative 807 (85) 454 (84) 353 (87)  
 Other 25 (3) 17 (3) 8 (2)  
SPCS were used 
 Yes 351 (36) 233 (41) 118 (28) 0.001 
 No 631 (64) 332 (59) 299 (72)  
GP informed of preferred death place 
 Yes 576 (58) 318 (56) 258 (61) 0.075 
 No 414 (42) 252 (44) 162 (39)  
Patient preferred to die 
 At home 369 (64) 249 (78) 120 (47) 0.001 
 In a residential care home 169 (29) 40 (13) 129 (50)  
 In a hospice 21 (4) 18 (6) 3 (1)  
 In a hospital 10 (2) 8 (3) 2 (1)  
 In Dutch nursing home 5 (1) 2 (1) 3 (1)  
 Elsewhere 2 (0.3) 1 (0.3) 1 (0.4)  
Actual place of death 
 Hospital 309 (32) 205 (37) 104 (25) 0.001 
 Private home 336 (34) 226 (40) 110 (26)  
 Residential care home 215 (22) 51 (9) 164 (39)  
 Dutch nursing home 72 (7) 43 (8) 29 (7)  
 Hospice or palliative-care unit 37 (4) 29 (5) 8 (2)  
 Other 6 (1) 5 (1) 1 (0.2)  
Patient died in a preferred place 
 Yes 467 (81) 257 (81) 210 (81) 0.860 
 No 109 (19) 61 (19) 48 (19)  
Variable Total, n (%) 65–84 years, n (%) ≥85 years, n (%) P-valuea 
 990 (100) 570 (58) 420 (42)  
Gender 
 Male 460 (50) 328 (62) 130 (33) 0.001 
 Female 462 (50) 201 (38) 259 (67)  
Cause of death 
 Cancer 320 (32) 254 (45) 66 (16) 0.001 
 Heart failure 166 (17) 70 (12) 96 (23)  
 Stroke 96 (10) 44 (8) 52 (12)  
 Chronic obstructive pulmonary disease (COPD) 80 (8) 52 (9) 28 (7)  
 Nervous system 37 (4) 13 (2) 24 (6)  
 Old age 24 (3) 24 (6)  
 Euthanasia 14 (1) 11 (2) 3 (1)  
 Others combinedb 249 (25) 122 (23) 127 (30)  
Reported co-morbidityc 
 Yes 449 (45) 248 (43) 201 (48) 0.219 
 No 537 (55) 318 (56) 219 (52)  
Main treatment goal in the last week of life 
 Curative 68 (7) 40 (7) 28 (7) 0.571 
 Life-prolonging 45 (5) 28 (5) 17 (4)  
 Palliative 807 (85) 454 (84) 353 (87)  
 Other 25 (3) 17 (3) 8 (2)  
SPCS were used 
 Yes 351 (36) 233 (41) 118 (28) 0.001 
 No 631 (64) 332 (59) 299 (72)  
GP informed of preferred death place 
 Yes 576 (58) 318 (56) 258 (61) 0.075 
 No 414 (42) 252 (44) 162 (39)  
Patient preferred to die 
 At home 369 (64) 249 (78) 120 (47) 0.001 
 In a residential care home 169 (29) 40 (13) 129 (50)  
 In a hospice 21 (4) 18 (6) 3 (1)  
 In a hospital 10 (2) 8 (3) 2 (1)  
 In Dutch nursing home 5 (1) 2 (1) 3 (1)  
 Elsewhere 2 (0.3) 1 (0.3) 1 (0.4)  
Actual place of death 
 Hospital 309 (32) 205 (37) 104 (25) 0.001 
 Private home 336 (34) 226 (40) 110 (26)  
 Residential care home 215 (22) 51 (9) 164 (39)  
 Dutch nursing home 72 (7) 43 (8) 29 (7)  
 Hospice or palliative-care unit 37 (4) 29 (5) 8 (2)  
 Other 6 (1) 5 (1) 1 (0.2)  
Patient died in a preferred place 
 Yes 467 (81) 257 (81) 210 (81) 0.860 
 No 109 (19) 61 (19) 48 (19)  

aPearson's chi-square test. Between-group difference was significant (P  <  0.05).

bOther causes of death include renal failure, hepatic cirrhosis, chronic cachexia.

c‘Co-morbidity’ is >1 major chronic illness.

Discussion

These results show that the oldest old subgroup had more women than men, more patients with heart failure than cancer, less hospital and home, but more care home deaths, in comparison to the younger old. Of the oldest old patients, fewer used or were referred to SPCS, fewer preferred to die at home and more preferred to die in a care home than the younger old. Age was an independent factor, associated with the use of palliative care: compared with the younger group, the oldest old used SPCS less often (OR = 0.7) and were treated with a palliative-centred goal more often (OR = 2.4), independent of other patient, illness and treatment characteristics. However, there was no relationship between age and dying in a preferred place, independent of the other factors. Furthermore, heart failure and place of death were independently associated with the use of SPCS; heart failure and COPD were independently associated with receiving palliation-focused treatment and stroke and an absent palliation-focused treatment goal were independently associated with dying in a preferred place. The proportions explained variance of the analyses exploring the associated factors of SPCS use and a palliation-focused treatment goal were low.

To the best of our knowledge, this is the first nationwide study that explores aspects of end-of-life care within the older segment of the Dutch community. We gathered information from a registered general practice patient population, all of whom, in principle, could benefit from planned end-of-life care. We enlisted experienced GPs from an existing surveillance network, combined data over a 4-year duration in order to maintain high standards of registration and achieved robust analyses on the oldest of old. Expectedly, nursing home residents who are predominantly ≥65 years, were under-representated in our selection, because GPs hand-over the care of these residents to specialists. However, this under-representation would hardly be a problem since the results are based on proportions. Another possible limitation was the fact that the GPs provided information on the care they provided over a period of time, which may have led to some self-reporting or recall bias, although recall in itself could be enhanced by the use of patient records and the existing relationship with the patients.

The two age groups, 65–84 versus ≥85 years, with similar proportions dying in a preferred place, differed significantly in their actual place of death (Table 3). The oldest of old died more often in residential-care homes than home. This is hardly surprising, because care homes in the Netherlands are generally considered as ‘home’ for people with long-term care needs [5], majority of whom are very old [21]. It is plausible that the very old equally rely on the social networks these residential-care facilities provide [2], due to a lack of informal support.

The oldest old used SPCS less frequently and received palliative-centred treatment more frequently than the younger old patients, and these persisted in the presence of indicators of palliative care needs: diagnosis cancer and the presence of co-morbidities. Like Burge et al. [12] did in their population-based study, we controlled for a range of potential confounders, and again our results are comparable in that they show patients ≥65 years, (but particularly ≥85 years), to be significantly less likely to be registered with a specialised palliative-care programme than those <65 years. And although these two variables are insufficient as full-blown indicators of patient needs; yet they provide reasons for the validation of our findings [13, 14].

Despite a higher incidence of congestive heart failure, the oldest of old received palliative-focused treatment more frequently than the younger old. This may suggest a palliative philosophy in the care of the oldest old in the Netherlands that transcends diagnoses. We do not know whether the supplementary palliative-care training given to Dutch GPs could explain this finding [30]. On the other hand, this could likewise imply that the GPs provide alternative life-prolonging therapies less frequently to this subgroup of patients, an apparent finding from a previous Belgian study [25]. Contrary to the main treatment goal being palliative, our results show that SPCS were less frequently used by the oldest old. This may be linked to the presence of trained carers in residential-care homes, often suggesting that patients’ needs are being met [5]. However, in the absence of adequate training, certain needs may go unrecognized, depending on the inherent decline, e.g. speech and cognitive problems [2, 23], and unfortunately, there are fewer specialised palliative units in residential homes versus specialised nursing homes, for instance [5]. Albeit reasons for this pattern of SPCS use among the oldest of old should be explored in detail in future studies.

In conclusion, our results suggest that GPs in the Dutch community recognize the ‘palliative phase’ in the very old, but perhaps judge the use of specialist teams unnecessary (rightfully or not). This practice is consistent with the Dutch societal expectation of caring for the very frail in an ‘appropriate’ place of death, with familiar carers and settings. Our observations provide fresh insight into the pattern of palliative-care service utilisation by the fastest growing cohort in the community, and this could inevitably inform planning, particularly from an economic perspective. Also the results stress that a needs assessment is an essential part of palliative care provision for the oldest of old.

Key points
  • Oldest old frequently had palliative care treatment goals.

  • Oldest old less often used specialised palliative care initiatives.

  • Age not related to dying in preferred place.

  • Oldest old more often preferred to die in a residential care home.

Conflicts of interest

For all authors, there are no potential conflicts of interest.

Declaration of Sources of Funding

This work was financially supported by the Belgian Institute for the Promotion of Innovation by Science and Technology in Flanders (grant no. SBO IWT 050158) as a strategic and comparative research project. This sponsor played absolutely no role in the design or conduct of the study; collection, management, analyses or interpretation of the data or in the preparation, review or approval of this manuscript. Rather, the corresponding author had full access to all the data in the study and, together with the co-authors, has the final responsibility for the decision to submit this manuscript for publication.

Acknowledgements

We thank all the sentinel GPs in The Netherlands for participating in this study, Mrs Marianne Heshusius of The NIVEL Institute for supervising the data collection and Ms Ingeborg Deerenberg of The Netherlands Central Bureau of Statistics for providing subpopulation mortality rates.

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