Specialised palliative home care for older people: towards a new service model

INTRODUCTION
We live longer, but not always in good health. Many older persons experience long periods of illness, multimorbidity, disabilities or frailty. Frailty is a common condition in old age. In medical literature, it is defined by a decline in the physiological capacity of several organ systems that cause an increased susceptibility to stressors. When older people with serious chronic conditions approach the end of life, they often experience multiple and multidimensional symptoms, concerns and problems that transcend physical, psychosocial, and spiritual domains. While we should acknowledge that many of them spend a large proportion of their life in relatively good health, and not all of them approaching the end of life have these needs, the complex care needs of those who do experience them are not always adequately met. It is stated that palliative care should be integrated in the care response for older people with serious chronic conditions. It has been recommended by the World Health Organisation as an approach to address problems associated with life-threatening illness by means of early identification, assessment, and treatment of physical, psychosocial, and spiritual problems. Two complementary palliative care service models have been advocated, namely generalist palliative care provided by healthcare providers with good basic palliative care knowledge and skills, and specialised palliative care provided by clinicians and multidisciplinary services who are specially trained in palliative care delivery. Specialised palliative care services are recommended at times when patient’s needs become too complex to be addressed by generalist palliative care providers alone. In the literature, older people with frailty and multimorbidity are frequently called the ‘disadvantaged dying’. This refers to their often low and late access to palliative care services, that is, often in the terminal phase or reactively in a crisis. Several reasons have been identified that might explain the inequality in palliative care for them. For instance, their disease trajectory is often described as clinically uncertain, meaning it might be particularly difficult for healthcare professionals to prognosticate death and dying. Currently, there is limited evidence on which palliative care service models are best in addressing the often-complex care needs of older people towards the end of life. Developing and evaluating such services for older people is particularly important in primary care settings as most of them prefer to remain in their usual residence as long as possible (e.g. home). Recently, new models of timely short-term palliative care have been developed for older people with serious non-cancer conditions. These models comprised involvement of specialised palliative care services during episodes of complex needs and integration of services with the existing primary care providers. The service model was tested in England in a small-scale randomised controlled trial (RCT) and showed to be effective in reducing symptom distress for older people in a pilot study. While this is first important evidence, it remains unclear which intervention components have led to beneficial patient outcomes. In addition, it is not known how such interventions can best be implemented in routine clinical practice. Lastly, this type of intervention has only been tested in a small region; it should be further investigated whether this type of intervention can also lead to beneficial outcomes for older people elsewhere. A major reason for the lack of clarity in intervention components and implementation, is the difficulty of describing and evaluating such complex interventions comprehensively. According to the UK Medical Research Council (MRC) guidance for developing and evaluating complex interventions, such interventions often consist of several interacting components situated at different levels and interacting with contextual barriers and facilitators. The UK MRC recommends researchers to provide understanding of components and processes that potentially lead to the desired outcomes, and how the intervention should be implemented in practice. To facilitate this understanding, the framework recommends incorporating a theory in the design and evaluation, conducting a process evaluation alongside the outcome evaluation, and assessing feasibility of the intervention and pilot methods prior testing the intervention in a full -scale RCT. In the domain of palliative care, such theories are usually not developed. This project aimed to changed that tradition.
RESEARCH AIMS
Hence, we aim to provide an overview of current palliative care provision for and palliative care needs and well-being of older people nationally and internationally (Part 1 of this thesis). To realise research aim 1, we examined the quality of primary palliative care for older people in three European countries, described the palliative care needs and well-being of older people upon hospital discharge and systematically reviewed the evidence on specialised palliative home care services for older people. In addition, we also aim to develop, implement, and pilot a timely short-term specialised palliative care service intervention for older people with frailty and complex care needs and their family in primary care (i.e. the Frailty+ intervention) (Part 2). To realise research aim 2, we described the Theory of Change of the timely short-term specialised palliative care service intervention and the study protocol of a pilot randomised controlled trial to test this intervention. Moreover, we evaluated the feasibility of the RCT methods and the implementation and preliminary effectiveness of Frailty+.
METHODS
We used different research methods to realise the research aims of this thesis. Research aim 1 was addressed using a population-based mortality follow-back study using existing sentinel networks of general practitioners in Belgium, Italy and Spain, a cross-sectional study using the baseline survey of the pilot RCT, and a systematic literature review. Research aim 2 was addressed through the development and pilot evaluation of a timely and short-term specialised palliative care service intervention for older people with frailty and complex care needs in primary care and their family, following the established UK MRC guidance for developing and evaluating complex interventions integrated with a Theory of Change approach.
MAIN FINDINGS
In Chapter 1, we assessed the use and quality of primary palliative care for people aged 65 years or older in Belgium compared to Italy and Spain. We used a validated set of nine quality indicators. For almost all quality indicators, we found higher scores for Belgium than Italy, but fewer consistent differences between Belgium and Spain. General practitioners in the three countries reported relatively high quality indicator scores regarding general practitioner and family communication and bereavement counselling. However, across the three countries, there is common room for improvement, in particular in regular pain measurement of the general practitioner in the last months of life and general practitioner and patient communication about illness-related topics. In Chapter 2, we found heterogeneity in experienced symptom burden of older people who were identified as having frailty and complex needs upon hospital discharge. Most patients were affected by multiple symptoms and concerns, while some were not. The most frequently reported symptoms that cause severe problems included weakness, poor mobility, sore mouth, pain, and family anxiety. Close to three-quarters or more of the patients reported feeling supported, being able to maintain their dignity and to be able to be with people who care about them. We found that greater palliative care symptoms and concerns were moderately correlated with lower well-being. In Chapter 3, we identified that referral criteria to specialised palliative care services were mainly focused on patient characteristics, such as prognosis and to a lesser extent on needs. We also identified that services provided multidisciplinary holistic care and outcomes were related to patients and families, such as symptom control. Most articles did not provide complete descriptions of the services which hindered full understanding of essential components.We used the Theory of Change approach to develop the hypothesised causal pathway of Frailty+ (Chapter 4). The Theory of Change specified through which changes the intervention’s long-term outcomes can be reached. To do so, we synthesized evidence from the systematic review (Chapter 3) and qualitative research. Long-term outcomes were identified, such as increased well-being, and preconditions to achieve them, for instance, palliative care nurses need to be willing to deliver Frailty+. The intervention consisted of several intervention components, including implementation components and a core component. The latter includes five sub-components: timely and short-term service delivery; collaborative and integrative working within primary care; delivery of holistic needs- and capacity-based; person-centred as well as family-focused; and goal-oriented and pro-active care. In Chapter 5, we presented the study protocol of a pilot RCT and a process evaluation to study feasibility of trial methods and implementation and preliminary effects of Frailty+. Eligible patients were aged 70 years or older, with mild to severe frailty, and complex care needs and about to be discharged to home from the hospital. Patients were randomly assigned either to receive standard care (control group) or Frailty+ in addition to standard care (intervention group). Those randomised to Frai lty+ received timely short-term specialised palliative care facilitated by a palliative home care nurse over a period of 8-weeks. We assessed implementation of Frailty+ and feasibility of trial methods during and post-intervention using mixed methods. The primary outcome for evaluating preliminary effects was a mean sum score across five key palliative care symptoms measured at baseline and 8-weeks post-baseline. In Chapter 6, we reported the results of the pilot RCT. We recruited a smaller sample than planned (n=50). In total, 37 patients were randomised (intervention group: n=19; control group: n=18), and 26 family carers. Frailty+ was generally well-received by patients and families. However, we identified that the core of Frailty+ was not entirely implemented as foreseen. Nurses visited most intervention patients only once at home while it was foreseen that the intervention could run for 8 weeks. They also did not plan multidisciplinary primary care meetings on palliative care, as intended. Nurses perceived this as not necessary because according to them patients had a relatively stable health status. Contextual factors likely influenced implementation in practice, such as the COVID-19 crisis. RCT methods were feasible in this population, however, recruitment difficulties were identified. We found no intervention effects on the primary outcome in our sample of patients.
DISCUSSION OF MAIN FINDINGS
Palliative care provision for and needs of older people living at home Findings of this dissertation shed light on current palliative care services for and needs of home-dwelling older people. First, we identified that there is substantial room for improvement in palliative care for older people in primary care. More specifically, most of the older people their pain was not regularly measured by their general practitioner. Also, general practitioners did often not communicate with the patient about illness related topics and were not aware of the person’s medical preferences. In clinical practice, often a complex interplay of factors related to different levels, such as the patient, family, healthcare professional and even the wider organisation or system, form a barrier to optimal patient-physician clinical communication and decision-making. Second, findings from the review showed several activities through which specialised palliative home care was delivered for older people such as holistic needs- and capacity-based care, goal-based care, comprehensive assessment and coordination and collaboration between generalists and specialised palliative care providers. In addition, it is accepted that palliative care should be provided timely for older people with chronic conditions, the findings of our review showed that there is currently no consensus of what timely specialised palliative care provision for older people entails or how it should be organised in primary care. Lastly, our baseline survey data showed important heterogeneity in the experienced symptom burden and health status of older people towards the end of life. Moreover, our data showed that older people with high symptom burden do not necessarily have low well-being. Based on these findings, and aligned with the action plan of the United Nations on Healthy Ageing, it may be particularly appropriate that palliative care providers caring for older people towards the end of life focus on the management of symptoms and concerns and on supporting existing abilities and capacities.
Hypothesised causal pathway of timely short- term palliative care for older people
Through the participatory Theory of Change approach, we identified and visualised important components and processes that need to be in place to achieve the desired long-term outcomes. We identified and incorporated care principles from different disciplines such as palliative care and geriatric/rehabilitative care, and integrated pro-active and goal-oriented care with advance care planning as core foci of the intervention. In addition, we made components explicit that aimed to improve implementation of Frailty+, such as meetings to ensure engagement and buy-in, and training sessions for those delivering Frailty+. Several long-term outcomes were identified, of which some were also measured in previous studies, such as fewer unmet palliative care needs, but others were less often used to evaluate the effects of palliative care interventions, such as increased sense of security.
Implementation of the Frailty+ intervention – outcomes of the pilot RCT Patients and families generally valued Frailty+. Palliative care nurses also reported that the intervention has the potential to achieve beneficial outcomes for participants. While these are promising results, several aspects of the intervention model and RCT methods need to be improved before it can be evaluated in a full-scale RCT. First, the core of Frailty+ was not implemented as foreseen in practice. A possible reason for this is that palliative care nurses are usually involved late in the disease trajectory of patients and consequently primarily focus on complex pain and symptom management. It might therefore be that nurses perceived their timely involvement in the care for older people, as less central to their practices. This underscores that implementation of such timely palliative care interventions requires more
changes in practices and habits of nurses than we had foreseen. In retrospect, the training sessions were more based on encouraging nurses to provide needs- and capacity-based care rather than how to work with Frailty+ and how to implement it within their daily practices. Another important issue is the COVID-19 crisis. Nurses may have prioritised patients with more urgent needs. Therefore, they may have had less time and opportunities to fully adopt Frailty+.Second, we aimed to improve collaboration between generalists and specialised palliative care services through the organisation of multidisciplinary meetings in primary care. However, these meetings were never organised. Recent research stated that, to improve integration of health and social care services, it is particularly important to strength the relational integration rather than only the organisational integration. Further efforts are needed to improve the relational integration of palliative care services in the joint care for older people, for instance through the organisation of shared training sessions. Lastly, we identified that while most RCT methods were feasible in this population, our participant recruitment was hampered, primarily for two reasons, namely the current COVID-19 crisis considerably hindered recruitment (e.g. participant recruitment in the hospitals was suspended for four months) and recruiting hospital staff experienced issues in the selection of potential participants. This resulted in a smaller sample size than planned.
CONCLUSION
We identified that older people towards the end of life often experience multiple and multidimensional complex care needs. Frailty+, the timely short-term specialised palliative care intervention, has the potential to benefit older people and their families. However, we identified that implementation of timely palliative care services for older people in primary care is highly complex and difficult. This is primarily because implementation of such services often reIuires changes in current ways of working of specialised palliative care services. ased on these results, we conclude that several modifications to the current intervention are needed before it can be evaluated in a full-scale RCT. This should be conducted in co- production with professionals, patients, and families.
IMPLICATIONS
This thesis provides important recommendations for clinical practice, including: 1) provide high-Iuality generalist and specialised palliative home care for older people; 2) provide care that is focused on both palliative care needs as well as capacities of older people; 3) enhance professional relationships between generalist and specialised palliative care providers and 4) improve understanding and knowledge of palliative care. There are also recommendations and suggestions for future research, including: 1) understand (variation in) multidimensional complex palliative care needs and well-being of older people;
2) improve the theoretical model of timely and short-term specialised palliative home care for older people and 3) improve methodological procedures of palliative care trials. Lastly, the thesis gives policy recommendations: 1) integrate palliative care for older people in healthcare policies; 2) train healthcare professionals on timely palliative care for older people; 3) provide sufficient resources for high-quality timely palliative care for older people and 4) reflect on public attitudes and behaviours towards age, ageing and older people.