Goals of care discussions and treatment limitation decisions in European acute geriatric units: a one-day cross-sectional study Open Access

Abstract

Background

It is important to pursue goal-concordant care and to prevent non-beneficial interventions in older people.

Aim

To describe serious illness communication and decision-making practices in hospitalised older people in Europe.

Setting/participants

Data on advance directives, goals of care (GOC) discussions and treatment limitation decisions were collected about patients aged 75-years and older admitted to 23 European acute geriatric units (AGUs).

Results

In this cohort of 590 older persons [59.5% aged 85 and above, 59.3% female, median premorbid Clinical Frailty Score (CFS) 6], a formal advance directive was recorded in 3.3% and a pre-hospital treatment limitation in 14.0% with significant differences between European regions (respectively P < 0.001 and P = 0.018).

Most prevalent GOC was preservation of function (46.8%). GOC were discussed with patients in 64.0%, with families in 73.0%, within the interprofessional hospital team in 67.0% and with primary care in 13.4%. The GOC and the extent to which it was discussed differed between European regions (both P < 0.001). The prevalence of treatment limitation decisions was 53.7% with a large difference within and between countries (P < 0.001). The odds of having a treatment limitation decision were higher for patients with pre-hospital treatment limitation decisions (OR 39.1), residing in Western versus Southern Europe (OR 4.8), belonging to an older age category (OR 3.2), living with a higher number of severe comorbidities (OR 2.2) and higher premorbid CFS (OR 1.3).

Conclusions

There is large variability across European AGUs concerning GOC discussions and treatment limitation decisions. Sharing of information between primary and hospital care about patient preferences is noticeably deficient.

Key Points

• This is the first multicentre study across Europe about goals of care discussions and treatment limitation in acute geriatric units.

• Formal advance directives were present in ˂5% of older people admitted to European acute geriatric units.

• Treatment limitation decisions increased from 14% pre-hospital to ˃50% in the acute geriatric unit.

• This study showed large variability in goals of care discussion and treatment limitation decisions between European regions, countries and acute geriatric units.

• Sharing information about patient preferences between acute geriatric units and primary care needs improvement.

Introduction

For patients at the end of life, focusing on symptom control and optimising functionality and quality of life may be a better approach to care than focusing on life prolongation [1]. In high-income countries, more than half of all deaths occur in hospital, although home is the preferred place of care and death for the majority of older people [1]. Most patients want to avoid highly medicalised deaths [1–3]. The report of the Lancet Commission on the Value of Death described that excessive focus on clinical interventions at the end of life deprives families and friends of the opportunity to support patients during death and dying and increases suffering [4].

Serious illness communication and decision-making is important to prevent non-wanted and non-beneficial medical interventions [5, 6]. Whereas advance care planning is a process in which patients share their personal values and preferences regarding future medical care before a health crisis [5], goals of care (GOC) discussions intend to align real-time treatment decisions with patients’ values and priorities in a current specific context [5, 6] such as an acute geriatric unit (AGU) admission. AGUs are hospital wards where interprofessional teams treat older patients admitted with frailty and an acute health crisis (such as acute infections, falls, acute cardiovascular events or mental/behavioural problems) based on comprehensive geriatric assessment. In order to pursue goal-concordant care, it is widely recommended that patients and families are provided with clear information about their condition and health status. Information should also include uncertainties, potential benefits, risks and harms of interventions in potentially life-limiting illness facilitating more informed decisions when admitted to hospital [3, 4]. However serious illness communication and decision-making practices vary widely between countries, hospitals and wards as reported in intensive care units [7–9]. This illustrates the complexity of serious illness communication and decision-making in which individual preferences, social contexts and health systems vary.

Little is known about serious illness communication and decision-making in older patients in the AGU. To the best of our knowledge, there are only a few single-centre studies concerning prevalence of advance directives and treatment limitation decisions [10–13] and only one multicentre but single-country study [14] in older people admitted to the acute hospital. The European Geriatric Medicine Society Special Interest Group Palliative Care (EuGMS SIG-PC) aimed to fill in this void with a multi-country multi-centre observational study. The primary objective was to examine and compare serious illness communication and decision-making practices in older patients treated by geriatricians in Europe. More specifically, the research questions were as follows: (i) How prevalent are pre-hospital advance directives and treatment limitation decisions before hospitalisation on European AGUs? (ii) Are GOC discussed with patients, families, interprofessional hospital team and primary care? (iii) How prevalent are treatment limitation decisions during AGU hospitalisation and what are the associated factors? (iv) Do practices as described in (i) (ii) (iii) differ between European regions and/or countries?

Methods

Design

This was a one-day cross-sectional international multicentre study of serious illness communication and decision-making practices in patients of 75 years and older who are admitted to the acute hospital and who are (co)treated by a geriatrician or internist with special qualification in geriatric medicine.

National coordinators were recruited from the Special Interest Group Palliative Care within the EuGMS and were expected to recruit local investigators in their country, obtain Ethics Committee approval, and assist the local investigators in their data collection and quality tasks. We included 23 acute geriatric units in 11 countries and four European regions [Northern (Norway), Western (Austria, Belgium, Luxembourg, Switzerland and The Netherlands), Eastern (Czech Republic and Poland) and Southern/Mediterranean European region (Portugal, Spain and Türkiye)] (see Appendix 1 in the Supplementary Data section for the number of AGUs per region and per country).

Outcomes and instruments

On 16 June 2023, local investigators (who were the treating geriatricians) recorded data by means of an electronic case report form (see Appendix 2). For each patient under their care on the day of the study, serious illness communication and decision-making practices before (pre-hospital advance directives documents and pre-hospital treatment limitation decisions documents) and during (GOC discussions as reported by the treating physician and treatment limitation decision documents) hospitalisation were collected.

An advance directive was defined as a legal document that states a person’s living will and/or appointment of a surrogate decision-maker. Aside from that, there are other formal but non legal advance care planning documents such as ReSPECT [15] or treatment escalation plans which were not routinely used in the included countries and AGUs, thus not included in this study.

GOC were predefined in categories as extension of life (‘length of life is all that matters’), preservation of function (‘functionality is what matters most’), reducing symptoms of pain or other complaints (‘being comfortable is all that matters’).

A treatment limitation decision was defined as a written order specifying the intensity of treatment and grouped into four subcategories: (i) no Cardio-Pulmonary Resuscitation (CPR) only; (ii) no CPR and no intubation [other Intensive Care Unit (ICU) treatment possible]; (iii) no ICU treatment, only ward based medical treatment; (iv) no life prolongation and focus on comfort care. No written treatment limitation order together with a written ‘full code’ (or formal order of no treatment limitation) were categorised as ‘no treatment limitation decision’.

Other collected variables: length of stay before the study, age category, gender, reason for hospital admission, moderate to severe comorbidity, preadmission residence, premorbid frailty using Clinical Frailty Scale [16]. The CFS was scored by the geriatrician. The CFS ranks frailty from 1 (very fit) to 9 (terminally ill).

Statistics

We computed descriptive statistics and Chi Square test or independent-samples Kruskal-Wallis Test for association between patient characteristics, GOC discussions and treatment limitation decisions and European region using IBM SPSS Statistics software version 28 (IBM Corp., Armonk, NY, USA). The exact P-values are reported, with statistical significance defined as P ≤ 0.05.

In order to identify factors related to the presence of a treatment limitation decision in the AGU, a logistic regression model including all patient characteristics (see Table 1) was performed with stepwise removing variables non-significantly associated.

Ethics

This study was approved by the Ethics Committees of all participating centres. Informed consent was required in Austria, Türkiye and 1 of the Spanish hospitals. Informed consent was waived in the other centres because of the retrospective and non-interventional nature of the study. The treating geriatricians reviewed their medical files and delivered the pseudonymised data through a secure web application REDCap [17]. Data were centralised in Ghent University Hospital, Belgium (registration number bc-07858). The key is held only by the treating geriatrician, not by the principal investigator.

To ensure anonymity for the patients as well as the participating AGUs, it was required that results are shown per European region.

Results

In total, we included 590 patients. Table 1 summarises patient characteristics. Most older patients were admitted to the AGU because of an acute infection, falls and/or fractures or cardiovascular pathology. Almost 60% were aged 85 and above; 59% were female and 85% resided at home versus 15% in residential care such as a nursing home. Most common severe comorbidities were heart failure (30%) and moderate to severe dementia (20%). The median premorbid CFS was six, inter quartile range (IQR) [5–7], with 77% of patients having CFS of five or higher and 32% CFS of seven or higher. Overall, patient characteristics were similar when comparing European regions, however patients admitted in Eastern European countries were younger and had a higher prevalence of severe cardiac and renal comorbidities whereas patients recruited in Northern Europe had less prevalence of serious comorbidities (Table 1).

Prehospital advance directives and treatment limitation decisions

A formal advance directive was recorded before hospitalisation in 3.3% of the patients (6.3% in Western Europe, 1.6% in Southern Europe and 0% in Eastern and Northern European countries, P < 0.001). This concerned mostly a living will alone or in combination with a surrogate decision-maker appointment (Table 2). Other formal or non-legally binding advance care planning documents were not routinely used in countries included in the study.

In 14.0% (82/586) a pre-hospital admission treatment limitation was known, of which 9.8% was set in an earlier hospital admission (57/586), 2.2% (13/586) in home care, 2.0% (12/586) in residential care. The prevalence of pre-hospital treatment limitation decisions differed between European regions, 24.6% in Northern Europe, 15.3% in Western Europe, 11.1% in Eastern Europe and 10.1% in Southern Europe (P = 0.018) (Table 2).

Goals of care discussions in the AGU

The type of GOC and the extent to which it was discussed with the involved parties differed between European regions (Table 3) and between countries (data not shown). GOC were unknown in 11.4%. Of the remaining 509 cases (88.6%), the most prevalent GOC was preservation of function (238/509, 46.8%), followed by comfort in 31.2% (159/509) and life extension in 22.0% (112/509). GOC were discussed in 64% with patients, in 73% with families, in 67% within the interprofessional hospital team and in 13.4% with primary care (Table 3). In Eastern European AGUs life extension was more often the prevailing GOC and was more often discussed with patients compared to the other European regions.

Treatment limitation decision during AGU hospitalisation

In total, 53.7% had a formal treatment limitation decision during their stay on European AGUs. The prevalence of treatment limitation decisions differed significantly between European regions (Table 2): occurring in 71.3% in Western, 44.3% in Northern, 40.5% in Southern and 38.3% in Eastern Europe (P < 0.001). We also registered a significant difference between hospitals, within and between European regions (P < 0.001) (Figure 1). Three hospitals did not have any patient with a treatment limitation decision and were located in the Southern Europe/Mediterranean region. Two hospitals had formal treatment limitation decisions in all patients, also in the Southern Europe/Mediterranean region (Figure 1). Subcategories of treatment limitation can be found in detail in Table 2. In Southern Europe almost half of all patients did not have a written order, reflecting legal policy in Türkiye in which treatment limitation decisions are legally not allowed. In Northern and Eastern Europe half of the patients had a written full code.

In constructing the logistic regression model, we stepwise removed following variables: residence, moderate to severe renal failure, gender, uncontrolled cancer, moderate to severe pulmonary disease, moderate to severe dementia, length of stay, moderate to severe heart failure. In the final model; the odds of having a treatment limitation decision was significantly higher in patients with pre-hospital treatment limitation decision (OR 39.1), Western versus Southern Europe (OR 4.8), higher age category (OR 3.2 for 85–89 and 3.4 for 90+ when compared to 75–79), higher number of severe comorbidities (OR 2.2), and higher premorbid CFS (OR 1.3) (Table 4). There was no statistical difference between Southern versus Northern or Eastern Europe.

In patients with CFS of 7 and more, 69.6% had a treatment limitation decision, which differed as follows between the regions: 100% in Northern, 83.0% in Western, 58.6% in Eastern and 50.0% in Southern European/Mediterranean region (P < 0.001).

Discussion

To our knowledge, this is the first large-scale multicentre study in Europe on serious illness communication and decision-making in older hospitalised patients. Included patients in the cohort are very similar to other studies conducted in AGUs: 60% was aged 85 and higher, with a median CFS of 6 and 32% living with severe frailty (CFS seven or higher).

This study indicates a lack of advance care planning documents available on admission to the AGU with only 3.3% formal advance directives and 4.2% pre-hospital treatment limitation decisions documents from primary (including nursing home) care, although widely recommended in this population with high risk of functional decline, hospitalisation and mortality [1, 18, 19]. This is a known phenomenon throughout the world [20] and the most frequently mentioned reasons behind the lack of advance care planning are a default tendency to provide high-intensity treatment at the end of life [21–25], low acceptance of early palliative care in society [4, 16] and lack of communication skills amongst clinicians to conduct advance care planning conversations [18, 24]. Finally, adequate transfer of advance care planning documents and serious illness conversation information from primary care to the hospital and back remain an important obstacle [18, 24].

However, the prevalence of treatment limitation decisions increased from 14.0% before hospitalisation to 53.7% in the 23 included AGUs which illustrates that geriatricians engage actively in reflecting about ceiling of treatment in older frail and seriously ill patients admitted to their hospital wards. There are only few cross-sectional studies in acute hospitals that have examined prevalence of treatment limitation decisions: in available single- or pauci-centre studies, it ranged between 13% and 63% [11–13, 26–28]. Our study gives a first insight into older patients’ GOC as reported by their geriatrician: preservation of function is most important (46.8%), followed by being comfortable (31.2%) and least important is length of life (22.0%). These numbers are in line with recent studies in older people in the Netherlands [29] and in dementia caregivers [30] in whom life extension was not considered as very important [2]. However, it remains thought-provoking that only in 63% these GOC were discussed with the patients during hospitalisation, despite patient’s rights of owning such conversations and the high importance of being involved [20]. This calls for an increased attention to find the right time to include AGU patients in discussing about what really matters to them [31].

Length of stay was not associated with the prevalence of treatment limitation decisions in this study, indicating that treatment limitation decisions may not necessarily be time-dependent. Making ceiling of treatment decisions as early as within the first 48 h of admissions was also shown during the recent COVID pandemic where 70% of older patients were considered not suitable for intensive care admission in case of respiratory failure based on higher age, comorbidities and frailty [14, 32]. Also outside COVID times treatment limitation decisions within first 48 h of admission are common [10, 12, 28, 33]. Literature shows that patients with such early do not resuscitate orders often have shorter length of stay, fewer invasive interventions and ICU admissions at the end of life [28, 34–36] and have more probability of receiving spiritual care and having family present at time of death [37] without difference in in-hospital mortality between early and late treatment limitation decisions [33, 38].

In line with other studies [10, 12, 14, 32, 39] older patients who live with higher level of frailty and with more serious comorbidities had more often treatment limitation decisions. Short-term mortality increases with higher CFS and when CFS of 7 is reached, there is very high probability that patients are in the last months of their lives [40–42]. This underlines the crucial role of geriatricians in introducing palliative care [19, 32] also because they are experts in assessing the level of frailty. However, we also underline the importance of having discussions before acute admissions as we observed that geriatricians who participated in this study were more prone to install treatment limitation decisions when the patients already had a treatment limitation order in place before the current hospitalisation. Furthermore the communication gap between primary care and hospital should be filled based on the findings that advance care planning documents were lacking and that geriatricians do not regularly contact primary care to exchange information on GOC. Finally, because the correct interpretation of a patient’s values is more likely obtained when performed by a team [42–45], geriatricians should also more often include the entire interprofessional team in taking treatment limitation decisions. This may improve the management of good deaths and relieve suffering at the end-of-life [22, 45, 46].

What is new in this study is the observation of a wide variation in prevalence of treatment limitation decisions rising from 0% to 100% of patients hospitalised across European AGUs. More specifically in patients with CFS of 7 and more, the prevalence of patients with a treatment limitation decision varied from 100% in Northern, 83.0% in Western, 58.6% in Eastern and 50.0% in Southern European region countries (P < 0.001). Türkiye is the only included country where treatment limitation decisions are not legal; however there were also other AGUs with few treatment limitation decisions without legal restrictions. There was variation both on the level of treatment limitation (for example in Northern and Eastern European countries, there was more often explicit written full code) and on the way it was discussed with other involved parties. Variability was observed between the European regions but also between countries in each of the included European regions and supports the notion that not only factors at the patient level but also subjective factors at the country, hospital, team and physician level exert a great influence in medical ethical decision-making [1, 7, 11, 18, 22]. The significant variability across European AGUs supports the need to establish European recommendations for best practices regarding serious illness communication and treatment limitation decisions in older persons admitted to the acute hospital.

Strengths and limitations

The innovative character, the large multicentre real-life dataset and the prospective nature of inclusion are the main strengths of this study. The heterogeneity of older patients admitted to AGUs is clearly reflected in the patient characteristics.

The first main limitation is the convenience sample of AGUs recruited by national coordinators with a special interest in palliative care; prone to selection bias. By combining Portugal, Spain and Türkiye into the same group and Türkiye being the only country with legal restrictions on treatment limitation decisions, this is an inhomogeneous group that may not reflect the reality in Southern Europe. However, the results are comparable to intensive care units where end-of-life care practices are less prevalent in Southern European countries [7–9]. Lastly, we lack the direct perspective of the patient, family, AGU team and primary care.

Implications for practice

The study results show the need for improved communication on many levels: with patients and families as well as within interprofessional teams and with primary care.

Interventions addressing communication at the interface between primary and hospital care should be a key component of quality improvement in delivering person-centred care to the older adult [24]. Some authors put advanced clinical practitioners forward to take up this role in safeguarding continuity of care [47].

We need AGU teams to be experts in restoration of function but also in palliative care [19] and more specifically in eliciting patient’s wishes and GOC (also in cognitively impaired persons) [1] and translating these in treatment plans [48]. Improving palliative care skills such as complex decision-making requires not only communication skills [18] but also introduction of reflective practice and ethical leadership within interprofessional teams in order to better deal with difficult patient situations such as when patients or families choose treatments the care team may not recommend [1, 19, 45, 46, 49].

Future research

There is a need to study better models for recording serious illness communication and decision-making that can be used across settings. It is recommended that such standardised document combines advance directives, GOC discussions and ceiling of treatment decisions in a single resuscitation plan [50]. These resuscitation plans are already more commonly used in countries like the UK [15], however, this country was not included in the study sample.

Scientific-sound guideline building on treatment limitation decisions could be another route to help stimulate high quality care for seriously ill patients. Geriatric, palliative care and primary care specialists should work together to provide optimal guidance for all frail older patients [19, 32].

This study can serve as a benchmark for practice and future research into serious illness communication and decision-making in AGUs.

Conclusion

European geriatricians frequently engage in goals of care discussions and in ceiling of treatment decisions based on prognostic factors such as frailty and comorbidities; however there is a lot of variation within and between European countries. If we want to prevent non-beneficial and potentially harmful treatment in older patients admitted in the AGU, interventions at the patient, team and hospital level and more guidance from professional organisations are needed.

Acknowledgements:

We thank all of the participating geriatricians or internists with special qualification in geriatric medicine who were local investigator for this study: Benoit Boland (Cliniques universitaires Saint-Luc, Belgium), Isabelle Gilard (Cliniques universitaires Saint-Luc, Belgium), Sophie Marien (Cliniques universitaires Saint-Luc, Belgium), Aurélie Guès (Centre Hospitalier Emile Mayrisch, Niederkorn, Luxembourg), Karim Moulla (CHL, Luxembourg, Luxembourg), Jean Servais (Centre Hospitalier du Nord, GD de Luxembourg, Ettelbruck, Luxembourg), Marieke Meinardi (Albert Schweitzer hospital, the Netherlands), Kristin Mork Hamre (Akershus University Hospital, Lørenskog, Norway), Marius Myrstad (Baerum Hospital, Vestre Viken Hospital Trust, Drammen, Norway), Anette Hylen Ranhof (Diakonhjemmet hospital Oslo, Norway), Lorena García Cabrera (Hospital Universitario Ramón y Cajal, Madrid, Spain), Javier Ortiz (Hospital Universitario Gregorio Marañón, Madrid, Spain), Carlos Verdejo (Hospital Universitario Clínico San Carlos, Madrid, Spain), Benito Fontecha (Hospital General de l’Hospitalet—Consorci Sanitari Integral, l’Hospitalet de Llobregat, Barcelona, Spain), Joan Espaulella Panicot (Hopital Universitari de la Santa Creu de Vic, Vic, Barcelona, Spain), Sibel Ilgun Çavdar (Ege University Hospital, Turkey).

Declaration of Conflicts of Interest:

None declared.

Declaration of Sources of Funding:

This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

Data Availability:

Data can be requested by contacting [email protected]. To ensure anonymity for the patients as well as the participating AGUs, patient, hospital and country will be removed and only generalised reports per European region will be made available.

References