Experiences with Palliative Care for Older Adults in Poland

Practice-based contribution

Abstract

This practice-based contribution discusses access to palliative care for older adults in Poland, with particular attention to multimorbidity, frailty and advanced dementia. The authors describe barriers associated with diagnosis-based eligibility and highlight the importance of recognising pain and other unmet needs when verbal communication is limited. They outline an interdisciplinary approach at the Capital Care and Treatment Center in Warsaw that combines observation, caregiver input, comprehensive geriatric assessment, non-pharmacological support and medication review. Clinical examples illustrate the risk of interpreting distress primarily as a psychiatric symptom. The contribution argues for needs-based palliative care and better professional education.

Keywords: palliative care; dementia; pain assessment; frailty; long-term care

Introduction

In Poland, many older adults who could benefit from palliative care do not have access to it due to funding criteria that still largely prioritize oncological diagnoses. As a result, patients with multimorbidity, frailty syndrome, and advanced functional decline are frequently excluded from palliative care pathways, despite having complex and burdensome symptom profiles that are comparable, in terms of severity and impact on quality of life, to those observed in patients with cancer.

This exclusion reflects a persistent system-level focus on cancer as the primary indication for palliative care services, while other chronic progressive conditions – such as advanced heart failure, neurodegenerative diseases, or severe frailty in older age – remain unrecognized within formal eligibility criteria. Consequently, a significant proportion of older patients with high symptom burden do not receive palliative support.

At the same time, comparative analyses of symptom burden across different diagnostic groups eligible for palliative care demonstrate that, although there may be differences in the prevalence and clinical presentation of specific symptoms, the overall impact on patient functioning, comfort, and quality of life is similarly profound. Pain, dyspnea, fatigue, anxiety, and sleep disturbances are common across these populations, regardless of the underlying diagnosis [1].

Importantly, a symptom-oriented approach – central to palliative care – has consistently been shown to improve both patient outcomes and caregiver well-being. Focusing on symptom control, functional support, and psychosocial needs allows for meaningful improvements in quality of life, even when the underlying disease cannot be modified. This holds true across diagnostic categories and is not limited to oncology patients [2].

The question of whether the symptoms experienced by older adults with multimorbidity and frailty should be systematically approached from a palliative care perspective – both to enhance patient and caregiver outcomes and to address the broader implications for healthcare system efficiency and costs – has been repeatedly raised in the literature and clinical practice. However, despite growing evidence and ongoing debate, this issue remains insufficiently addressed within current healthcare policies and funding structures.

Individuals living with dementia and palliative care

Among patients with non-cancer diagnoses, a particularly important group consists of people living with advanced dementia. These individuals are characterized by significant limitations in verbal communication and therefore require a specific approach from caregivers based on careful observation of their behavior and the ability to interpret any emerging changes. Consequently, the importance of proper caregiver training is strongly emphasized, as without caregivers’ involvement an appropriate assessment of the needs of people living with advanced dementia is not possible.

More than a decade ago (in 2014), the White Paper defining optimal palliative care in older people with dementia was published, resulting from a Delphi study and recommendations from the European Association for Palliative Care [3]. It contains the first evidence-based and consensus-based definition of palliative care in dementia, as well as a framework providing guidance for clinical practice, policy, and research.

It states, among other things, that recognizing the eventual terminal nature of dementia is the basis for anticipating future problems and a driving force for providing adequate palliative care. Moreover, it emphasizes that “a palliative care approach refers to all treatment and care in dementia, including adequate treatment of behavioral and psychological symptoms of dementia, comorbid diseases, and (intercurrent or concurrent) health problems.” It also points out that a holistic approach to symptom management is essential in this approach, as symptoms occur frequently and may be interrelated or manifest in different ways (for example, pain may present as agitation) and that distinguishing between different sources of discomfort (such as pain or feeling cold) in severe dementia is improved by incorporating the perspectives of multiple caregivers.

Unfortunately, all of this remains theoretical, as these recommendations are not reflected in the healthcare system in Poland, where dementia is not regarded by the payer (National Health Fund; in Polish: Narodowy Fundusz Zdrowia - NFZ) as an indication for palliative care coverage.

A particular problem in people living with dementia is the excessive use of antipsychotics, which are administered in response to behavioral changes, including agitation, without first asking about their underlying causes. However, such changes often result from limitations in verbal communication. We have just published a case report of a female patient with dementia who was prescribed two antipsychotics (quetiapine and tiapride) as well as an anxiolytic (hydroxyzine) [4]. We demonstrated that this resulted from a misunderstanding of her needs and prescribing drugs without asking about the reason for her agitation which developing medication cascade (where successive additions of medications further intensified agitation). Ultimately, with appropriately conducted occupational therapy, it was possible to discontinue all these medications.

Pain in individuals living with dementia

Among people living with dementia pain is a particular concern. In this group, pain is frequently underrecognized, as patients are often unable to verbally express its presence, intensity, or character. As a result, clinical assessment relies heavily on indirect indicators such as changes in behavior, facial expressions, posture, sleep patterns, appetite, or levels of agitation, which may be subtle and easily misinterpreted [5].

Because of these communication barriers, pain in this population is not only underdiagnosed but also undertreated. Symptoms that may in fact be pain-related are sometimes attributed to behavioral or psychiatric disturbances, which can lead to inappropriate management strategies, including the use of psychotropic medications rather than analgesic treatment [6]. This misinterpretation contributes to unnecessary patient suffering and may further exacerbate behavioral symptoms.

For years, studies have demonstrated that these patients are frequently not prescribed appropriate analgesic treatment [7,8]. In a project conducted in long-term care facilities, we demonstrated that patients whose pain management consisted only of low doses of paracetamol (mainly 500 mg once daily) were often agitated, as reflected by high scores on the Cohen-Mansfield Agitation Inventory [9]. Their scores on the observational pain assessment tool, the Abbey Pain Scale, were also high, suggesting the presence of untreated pain.

This undertreatment reflects diagnostic uncertainty resulting from a lack of systematic approaches to pain assessment in non-communicative patients. Regarding the diagnostic issue, studies indeed show that in approximately one quarter of cases physicians do not recognize the need for pain treatment in these patients, even though the presence of pain is evident to their caregivers [10]. These studies also highlight the need for education how to use dedicated observational structured assessment tools as well as a caregiver education, and interdisciplinary collaboration to improve pain recognition and management. Because in our studies medical students often believed that the same pain assessment scales could be used for patients without communication impairments, and that people living with dementia require a different therapeutic approach due to altered pharmacokinetics and pharmacodynamics of analgesic drugs [11], we introduced a special education program dedicated to pain assessment and pain management in people living with dementia into the curriculum.

Improving pain detection and ensuring adequate analgesic therapy in this vulnerable group remains a critical priority in optimizing the quality of care, reducing behavioral symptoms, and enhancing overall quality of life.

An interdisciplinary model of care

Addressing the issue of inappropriate approach to the treatment of individuals living with dementia requires not only systemic changes in care delivery but also reforms in education and professional training. In response to these unmet needs, an interdisciplinary model of care has been implemented at the Capital Care and Treatment Center (pol. Stołeczne Centrum Opiekuńczo-Lecznicze - SCOL) in Warsaw, Poland, where particular attention is paid to the recognition and management of pain and behavioral symptoms in older adults living with dementia [12].

A key element of the SCOL model is the prioritization of non-pharmacological interventions combined with rational pharmacotherapy optimization. Behavioral changes are approached as potential expressions of unmet physical, emotional, social, or environmental needs rather than being automatically interpreted as psychiatric symptoms requiring sedation. Therefore, the interdisciplinary team first identifies potentially reversible causes of distress and implements individualized supportive interventions, including occupational therapy, environmental modifications, caregiver-centered communication strategies, and structured daily activities. Pharmacological treatment is considered only after these factors have been carefully evaluated. This approach contributes to reducing inappropriate antipsychotic use and supports safer, more person-centered care.

By integrating standardized assessment tools with comprehensive geriatric assessment and team-based decision-making, the model aims to improve quality of life, functional outcomes, patient safety, and quality of care for residents of long-term care facilities. Moreover, it serves as an example of a scalable organizational framework that may support broader optimization of long-term care systems in Poland and other ageing societies.

Conclusions

The authors argue that access to palliative care for older people in Poland should respond more closely to clinical need, including needs associated with frailty and dementia. Their experience supports further examination of barriers in eligibility, service organisation and professional education.

In advanced dementia, communication barriers significantly hinder symptom recognition, particularly pain, which is frequently underdiagnosed and undertreated. Behavioral changes are often misattributed to psychiatric causes, leading to inappropriate use of psychotropic medications instead of addressing underlying somatic or environmental factors.

Structured symptom assessment, caregiver input and interdisciplinary working are central to the approach described. Systematic evaluation is needed to establish whether the model improves patient outcomes and reduces inappropriate prescribing in other settings.