End-of-life communication in advanced cancer: international trends (2009-2014).

OBJECTIVE: To examine trends in end-of-life communication with people with cancer in general practice. METHODS: Mortality follow-back survey among general practitioners (GPs) in representative epidemiological surveillance networks in Belgium (BE), the Netherlands (NL) and Spain (ES) in 2009-2010 (ES: 2010-2011) and 2013-2014. Using a standardised form, GPs registered all deceased adult patients in their practice and reported for five end-of-life care topics whether they had been discussed with the patient. Non-sudden cancer deaths were included (n=2306; BE: 1233; NL: 729; ES: 344). RESULTS: A statistically significant increase was found between 2009/2010 and 2014 in the prevalence of communication about diagnosis (from 84% to 94%) and options for end-of-life care (from 73% to 90%) in BE, and in GPs' awareness of patients' preferences for medical treatment and a proxy decision-maker in BE (from 41% and 20% up to 53% and 28%) and the NL (from 62% and 32% up to 70% and 52%). Communication about options for end-of-life care and psychosocial problems decreased in the NL (from 88% and 91% down to 73%) and ES (from 76% and 77% down to 26% and 39%). CONCLUSION: Considerable change in GP-patient communication seems possible in a relatively short time span, but communication cannot be assumed to increase over time. Increasing specialisation of care and task differentiation may lead to new roles in communication for healthcare providers in primary and secondary care. Improved information sharing between GPs and other healthcare providers may be necessary to ensure that patients have the chance to discuss important end-of-life topics.

Medical end-of-life decisions in the oldest old in Switzerland.

AIMS OF THE STUDY: To analyse medical end-of-life decision making among the oldest old (80+ years) in Switzerland, focusing not only on treatments withheld or withdrawn but also on those continued until death. METHODS: This was a retrospective follow-up study of deaths registered in Switzerland between August 2013 and January 2014 using a standardised questionnaire completed by the attending physician. All individuals aged 65 years and older who did not die suddenly and completely unexpectedly, and who had met the responding physician prior to death were included (n = 2842). We examined three age groups: 65–79, 80–89, and 90+ years. Logistic regression analysis was used to identify age-related differences, controlled for place of death and sociodemographic characteristics. RESULTS: In 83.8% of the study population at least one medical end-of-life decision was made, and for 39.4% the use of a potentially life-sustaining treatment was documented. Alleviation of pain and other symptoms with a possible life-shortening effect was performed with 29% higher odds among the 90+-year-olds (odds ratio [OR] 1.29, 95% confidence interval [CI] 1.01–1.66) than in the youngest age group. Withholding or withdrawing potentially life-sustaining treatment with or without the explicit intention to hasten death did not differ with age. However, when the frequency of withholding a potentially life-sustaining treatment was compared with the frequency of using this treatment (either continued until death or withdrawn later on), the former was more common in old age (80–89 years), and particularly in very old age (90+ years) for most of the treatments studied. This applied especially for ventilator therapy (80–89 years: OR 2.83, 95% CI 1.82–4.41; 90+ years: OR 6.17, 95% CI 2.89–13.17, compared with 65–79 years), artificial nutrition (ORs 2.33, 95% CI 1.46–3.71 and 4.44, 95% CI 2.28–8.65, respectively), and antibiotics (ORs 1.53, 95% CI 1.11–2.09 and 1.57, 95% CI 1.05–2.35, respectively). Age had no independent impact on artificial hydration. CONCLUSIONS: The use of some potentially life-sustaining treatments decreased with older age and, in relation, the relative frequency of withholding such treatments increased. There may be various reasons for this finding: less benefit of a particular treatment in older patients for instance due to comorbidities, higher burden of treatment, and finally a tacit consensus of physicians and patients that death is nearing.

Continuing, Withdrawing, and Withholding Medical Treatment at the End of Life and Associated Characteristics: a Mortality Follow-back Study.

BACKGROUND: Studies on forgoing treatment often ignore treatments that are continued until death. OBJECTIVE: To investigate how often specific treatments are withdrawn or withheld before death and to describe the associated patient, physician, and care characteristics. DESIGN: National mortality follow-back study in Switzerland in 2013/2014 using a standardized survey to collect information on the patient's end of life and demographics on the physician. PARTICIPANTS: A random sample of adults who died non-suddenly without an external cause and who had met the physician completing the survey (N = 3051). MAIN MEASURES: Any of nine specific treatments was continued until death, withdrawn, or withheld. KEY RESULTS: In 2242 cases (84%), at least one treatment was either continued until death or withheld or withdrawn. The most common treatment was artificial hydration, which was continued in 23%, withdrawn in 4%, and withheld in 22% of all cases. The other eight treatments were withdrawn or withheld in 70-94% of applicable cases. The impact of physician characteristics was limited, but artificial hydration, antibiotics, artificial nutrition, and ventilator therapy were more likely to be withheld at home and in nursing homes than in the hospitals. CONCLUSIONS: Large differences exist between care settings in whether treatments are continued, withdrawn, or withheld, indicating the different availability of treatment options or different philosophies of care. While certain patient groups are more likely to have treatment withheld rather than attempted, neither patient nor physician characteristics impact the decision to continue or withdraw treatment.

Physician-related determinants of medical end-of-life decisions - A mortality follow-back study in Switzerland.

BACKGROUND: Medical end-of-life decisions (MELD) and shared decision-making are increasingly important issues for a majority of persons at the end of life. Little is known, however, about the impact of physician characteristics on these practices. We aimed at investigating whether MELDs depend on physician characteristics when controlling for patient characteristics and place of death. METHODS AND FINDINGS: Using a random sample (N = 8,963) of all deaths aged 1 year or older registered in Switzerland between 7 August 2013 and 5 February 2014, questionnaires covering MELD details and physicians' demographics, life stance and medical formation were sent to certifying physicians. The response rate was 59.4% (N = 5,328). Determinants of MELDs were analyzed in binary and multinomial logistic regression models. MELDs discussed with the patient or relatives were a secondary outcome. A total of 3,391 non-sudden nor completely unexpected deaths were used, 83% of which were preceded by forgoing treatment(s) and/or intensified alleviation of pain/symptoms intending or taking into account shortening of life. International medical graduates reported forgoing treatment less often, either alone (RRR = 0.30; 95% CI: 0.21-0.41) or combined with the intensified alleviation of pain and symptoms (RRR = 0.44; 0.34-0.55). The latter was also more prevalent among physicians who graduated in 2000 or later (RRR = 1.60; 1.17-2.19). MELDs were generally less frequent among physicians with a religious affiliation. Shared-decision making was analyzed among 2,542 decedents. MELDs were discussed with patient or relatives less frequently when physicians graduated abroad (OR = 0.65, 95% CI: 0.50-0.87) and more frequently when physicians graduated more recently; physician's sex and religion had no impact. CONCLUSIONS: Physicians' characteristics, including the country of medical education and time since graduation had a significant effect on the likelihood of an MELD and of shared decision-making. These findings call for additional efforts in physicians' education and training concerning end-of-life practices and improved communication skills.

Quality of primary palliative care for older people with mild and severe dementia: an international mortality follow-back study using quality indicators.

Background: measuring the quality of primary palliative care for older people with dementia in different countries is important to identify areas where improvements can be made. Objective: using quality indicators (QIs), we systematically investigated the overall quality of primary palliative care for older people with dementia in three different countries. Design/setting: a mortality follow-back survey through nation- and region-wide representative Sentinel Networks of General Practitioners (GPs) in Belgium, Italy and Spain. GPs registered all patient deaths in their practice. We applied a set of nine QIs developed through literature review and expert consensus. Subjects: patients aged 65 or older, who died non-suddenly with mild or severe dementia as judged by GPs (n = 874). Results: findings showed significantly different QI scores between Belgium and Italy for regular pain measurement (mild dementia: BE = 44%, IT = 12%, SP = 50% | severe dementia: BE = 41%, IT = 9%, SP = 47%), acceptance of approaching death (mild: BE = 59%, IT = 48%, SP = 33% | severe: BE = 41%, IT = 21%, SP = 20%), patient-GP communication about illness (mild: BE = 42%, IT = 6%, SP = 20%) and involvement of specialised palliative services (mild: BE = 60%, IT = 20%, SP = 77%). The scores in Belgium differed from Italy and Spain for patient-GP communication about medical treatments (mild: BE = 34%, IT = 12%, SP = 4%) and repeated multidisciplinary consultations (mild: BE = 39%, IT = 5%, SP = 8% | severe: BE = 36%, IT = 10%, SP = 8%). The scores for relative-GP communication, patient death outside hospitals and bereavement counselling did not differ between countries. Conclusion: while the countries studied differed considerably in the overall quality of primary palliative care, they have similarities in room for improvement, in particular, pain measurement and prevention of avoidable hospitalisations.

How accurately is euthanasia reported on death certificates in a country with legal euthanasia: a population-based study.

BACKGROUND: Death certificates are the main source of information on the incidence of the direct and underlying causes of death, but may be unsuitable for monitoring the practice of medical assistance in dying, e.g. euthanasia, due to possible underreporting. This study examines the accuracy of certification of euthanasia. METHODS: Mortality follow-back survey using a random sample of death certificates (N = 6871). For all cases identified as euthanasia we checked whether euthanasia was reported as a cause of death on the death certificate. We used multivariable logistic regression analysis to evaluate whether reporting varied according to patient and decision-making characteristics. RESULTS: Through the death certificates, 0.7% of all deaths were identified as euthanasia, compared with 4.6% through the mortality follow-back survey. Only 16.2% of the cases identified from the survey were reported on the death certificate. Euthanasia was more likely to be reported on the death certificate where death was from cancer (14% covered), neurological diseases (22%) and stroke (28%) than from cardiovascular disease (7%). Even when the recommended drugs were used or the physician self-labelled the end-of-life decision as euthanasia, euthanasia was only reported on the death certificate in 24% of cases. CONCLUSIONS: Death certificates substantially underestimate the frequency of euthanasia as a cause of death in Belgium. Mortality follow-back studies are essential complementary instruments to examine and monitor the practice of euthanasia more accurately. Death certificate forms may need to be modified and clear guidelines provided to physicians about recording euthanasia to ensure more accurate certification.

Palliative care service use by older people: Time trends from a mortality follow-back study between 2005 and 2014.

BACKGROUND: The need for increased use and timely initiation of palliative care for all people, not just those who die with cancer, has been advocated worldwide over the past decade. AIM: To investigate whether there has been a time trend in the use of palliative care services and the timing of their initiation for older people. DESIGN: Mortality follow-back survey among general practitioners in a nationally representative Sentinel Network in 2005-2010, 2013 and 2014 in Belgium. SETTING/PARTICIPANTS: Of all their patients who died non-suddenly aged 65+ years, general practitioners reported sociodemographic and clinical data, use of any of the palliative care services available in Belgium and when the first of these services was initiated. RESULTS: General practitioners identified 5344 deaths. Overall, palliative care service use increased from 39% in 2005 to 63% in 2014 ( p < 0.001). The use of a reference person for palliative care in a care home increased from 12% to 26% ( p < 0.001) and of a palliative homecare team from 14% to 17.5% ( p < 0.01), but hospital-based palliative care services did not increase. Controlling for sociodemographic characteristics, no differences were obtained over time in the proportion of cancer/non-cancer patients for whom they provided care. The timing of initiation of palliative care services remained unchanged at a median of 15 days before death. CONCLUSION: Palliative care service use has increased mostly in care homes, possibly as a result of policy changes, while hospital-based palliative care services lag behind. Contrary to recommendations, access for non-cancer patients may remain difficult and palliative care is often initiated late in the disease trajectory.

Admissions to inpatient care facilities in the last year of life of community-dwelling older people in Europe.

Background: In the last year of life, many older people rather avoid admissions to inpatient care facilities. We describe and compare such admissions in the last year of life of 5092 community-dwelling older people in 15 European countries (+Israel). Methods: Proxy-respondents of the older people, who participated in the longitudinal SHARE study, reported on admissions to inpatient care facilities (hospital, nursing home or hospice) during the last year of their life. Multivariable regression analyses assessed associations between hospitalizations and personal/contextual characteristics. Results: The proportion of people who had been admitted at least once to an inpatient care facility in the last year of life ranged from 54% (France) to 76% (Austria, Israel, Slovenia). Admissions mostly concerned hospitalizations. Multivariable analyses showed that especially Austrians, Israelis and Poles had higher chances of being hospitalized. Further, hospitalizations were more likely for those being ill for 6 months or more (OR:1.67, CI:1.39-2.01), and less likely for persons aged 80+ (OR:0.54, CI:0.39-0.74; compared with 48-65 years), females (OR:0.74, CI:0.63-0.89) and those dying of cardiovascular diseases (OR:0.66, CI:0.51-0.86; compared with those dying of cancer). Conclusions: Although healthcare policies increasingly stress the importance that people reside at home as long as possible, admissions to inpatient care facilities in the last year of life are relatively common across all countries. Furthermore, we found a striking variation concerning the proportion of admissions across countries which cannot only be explained by patient needs. It suggests that such admissions are at least partly driven by system-level or cultural factors.

End-of-life care for people dying with dementia in general practice in Belgium, Italy and Spain: A cross-sectional, retrospective study.

AIM: To describe and compare end-of-life care for people with mild or severe dementia in general practice in Belgium, Italy and Spain, in terms of place of care, place of death, treatment aims, use of specialized palliative care and communication with general practitioners (GPs). METHODS: Cross-sectional retrospective survey was carried out of nationwide networks of GPs in Belgium, Italy and Spain, including patients who died aged 65 years or older in 2009-2011 and were judged by the GP to have had dementia (n = 1623). RESULTS: GPs reported a higher proportion of older people with severe dementia in Belgium (55%) than in Spain (46 %) and Italy (45 %), and a higher proportion of patients living in care homes (57% vs 18% and 13%, respectively). A palliative treatment aim was common in the last 3 months of life in all three countries. Specialized palliative care services were provided in 14% (Italy, severe dementia) to 38% (Belgium, severe dementia) of cases. Communication between GP and patient about illness-related topics occurred in between 50% (Italy) and 72% (Belgium) of cases of mild dementia, and 10% (Italy) to 32% (Belgium) of cases of severe dementia. Patient preferences for end-of-life care were known in a minority of cases. Few people (13-15 %) were transferred between care settings in the last week of life. CONCLUSIONS: Although overall treatment aims at the end of life are often aligned with a palliative care approach and transfer rates are low, there is room for improvement in end-of-life care for people with dementia in all countries studied, especially regarding early patient-GP communication. Geriatr Gerontol Int 2017; 17: 1667-1676.

Comparison of end-of-life care for older people living at home and in residential homes: a mortality follow-back study among GPs in the Netherlands.

BACKGROUND: The proportion of older people is increasing, therefore their place of residence and place of care at the end of life are becoming increasingly important. AIM: To compare aspects of end-of-life care among older people in residential homes and home settings in the Netherlands. DESIGN AND SETTING: Nationwide representative mortality follow-back study among GPs in the Netherlands. METHOD: The study included patients aged ≥65 years who died non-suddenly, whose longest place of residence in their last year of life was at home or in a residential home (n = 498). Differences were analysed using Pearson's χ(2) test, Mann-Whitney U tests, and multivariate logistic regression. RESULTS: Controlling for the differences between the populations in home settings and residential homes, no differences were found in treatment goals, communication about end-of-life care, or use of specialised palliative care between the two settings. However, people living in a residential home were more likely to have received palliative care from a GP than people living at home (OR 2.84, 95% confidence interval [CI] = 1.41 to 5.07). In residential homes, people more often experienced no transfer between care settings (OR 2.76, 95% CI = 1.35 to 5.63) and no hospitalisations (OR 2.2, 95% CI = 1.04 to 4.67) in the last 3 months of life, and died in hospital less often (OR 0.78, 95% CI = 0.63 to 0.97) than those people living at home. CONCLUSION: Despite similar treatment goals, care in residential homes seems more successful in avoiding transfers and hospitalisation at the end of life. Especially since older people are encouraged to stay at home longer, measures should be taken to ensure they are not at higher risk of transfers and hospitalisations in this setting.

Awareness of dementia by family carers of nursing home residents dying with dementia: a post-death study.

BACKGROUND: High-quality palliative care for people with dementia should be patient-centered, family-focused, and include well-informed and shared decision-making, as affirmed in a recent white paper on dementia from the European Association for Palliative Care. AIM: To describe how often family carers of nursing home residents who died with dementia are aware that their relative has dementia, and study resident, family carer, and care characteristics associated with awareness. DESIGN: Post-death study using random cluster sampling. SETTING/PARTICIPANTS: Structured questionnaires were completed by family carers, nursing staff, and general practitioners of deceased nursing home residents with dementia in Flanders, Belgium (2010). RESULTS: Of 190 residents who died with dementia, 53.2% of family carers responded. In 28% of cases, family carers indicated they were unaware their relative had dementia. Awareness by family carers was related to more advanced stages of dementia 1 month before death (odds ratio = 5.4), with 48% of family carers being unaware when dementia was mild and 20% unaware when dementia was advanced. The longer the onset of dementia after admission to a nursing home, the less likely family carers were aware (odds ratio = 0.94). CONCLUSION: Family carers are often unaware that their relative has dementia, that is, in one-fourth of cases of dementia and one-fifth of advanced dementia, posing considerable challenges for optimal care provision and end-of-life decision-making. Considering that family carers of residents who develop dementia later after admission to a nursing home are less likely to be aware, there is room for improving communication strategies toward family carers of nursing home residents.