Keywords

1 Relationship Between Palliative Care and Sustainable Development Goals

1.1 Definition of Palliative Care

Palliative care has its roots in care provided in hospices (Saunders 2001). When it was first introduced, it was focused on and linked to end-of-life care for patients with cancer. The overall aim was to alleviate the existential and spiritual suffering of patients nearing death, as well as the treatment of symptoms. Over time, this approach has transformed from solely end-of-life care to a broader framework where palliative care is integrated in routine health care and seeks to improve care for patients throughout the disease trajectory. In contrast to traditional provisions of palliative care, this new conception envisions the provision of care alongside life-prolonging and curative treatments (Sepúlveda et al. 2002), also including diagnoses of life-limiting illnesses other than cancer (Fig. 11.1).

Fig. 11.1
An illustration of the integrated and traditional palliative care from diagnosis to death. The diagnosis for palliative care is treatment with curative or life-prolonging intentions. Palliative care to manage the symptoms and results in death. Traditional care focuses on end-of-life care.

Traditional versus integrated palliative care. Modified from “Integration of oncology and palliative care: a Lancet Oncology Commission” (https://doi.org/10.1016/S1470-2045(18)30415-7)

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This approach is in accordance with the most updated definition of palliative care, which states that:

Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness, and especially of those near the end of life. It aims to improve the quality of life of patients, their families, and their caregivers. (Palliative Care Definition n.d.)

Despite ongoing discussions regarding the content of palliative care, the model of delivery, and terminology (i.e. whether to use the term “palliative care” or “supportive care”), the common goal is always “to improve the patient’s quality of life congruent with the patient’s preferences” (Ryan et al. 2020). Based on the principles of palliative care (Fig. 11.2), patient-centred care is defined by the Institute of Medicine as “providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions” (Schuster et al. 2001). In patient-centred care, the focus is the patient living with the disease, and it recognises the multidimensional aspects of care, which encompass not only medical and physical aspects but also psychological, social, and spiritual factors.

Fig. 11.2
A list of 6 principles of palliative care. The principle is to focus on the quality of life, systematic assessment of the patient report, coordination and continuity of care, shared decision-making and advanced care, appropriate specialist palliative care and hospice referral, and end-of-life care.

Principles within a palliative care approach. When palliative is integrated with cancer care, these principles guide the care provided for cancer patients regardless of disease stage. (Author’s own figure)

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1.2 Relationship with the Sustainable Development Goals

Both palliative care and patient-centred care are aligned with the Sustainable Development Goals (SDGs) (Sustainable Development Goals 2023), in particular, the objectives of SDG 3: Good health and well-being and SDG 10: Reduced inequalities. The first emphasises improving the quality of life, alleviating suffering, and supporting patients and their families. The bearing principle of SDG 10 is equity, which is critical in the provision of palliative care (Fact sheet on Palliative Care (WHO) n.d.), and it advocates for reducing disparities in access to health care and improving health outcomes for all patients, regardless of socio-economic status, ethnicity, or religion. Moreover, by providing equitable palliative care that recognises and considers gender-specific needs and cultural sensitivities, SDG 5 (Gender equality) can also be advanced.

Palliative care requires training programmes to ensure that quality care is delivered to all patients, especially those with life-limiting illnesses, which should include communication skills, managing pain and other symptoms, and providing compassionate end-of-life care, thus being aligned with SDG 4 (Quality education). In addition, palliative care requires a multidisciplinary approach and collaboration among healthcare providers, families, and communities. By fostering partnerships between healthcare institutions, governments, NGOs, and community organisations, palliative care can enhance access to quality care, strengthen healthcare systems, and promote knowledge exchange, endorsing SDG 17 (Partnership for the goals).

In the past years, there has been a significant rise in healthcare costs that can be attributed to the rapidly increasing complexity of healthcare in general, and oncology care specifically. The rising costs threatens the sustainability of current healthcare services, especially in the field of cancer care (Schnipper et al. 2012). Patient-centred care that improves symptoms, satisfaction, and other patient-centred outcomes may reduce costs (Kaasa et al. 2017), given less aggressive treatments, and shorter lengths-of-stay in hospital, fewer emergency admissions (May et al. 2018), and better use of resources coherent with the patients’ values (Harris and Murray 2013), contributing to SDG 12 (Responsible consumption and production).

1.3 Barriers and Lack of Implementation: Problems Faced by Palliative Care

Multiple randomised controlled trials and studies have been conducted and show that early provision of palliative care results in better quality of care, better patient involvement and improves the quality of life, symptoms, and survival while reducing costs at the same time (Kaasa et al. 2018; May et al. 2018; Bajwah et al. 2020). Although the magnitude of the studies was small, a recent Cochrane review concluded that integrated care may still be beneficial to patients and carers (Bajwah et al. 2020). Based on this evidence, international organisations such as the World Health Organization (WHO), the European Society for Medical Oncology (ESMO), and the American Society of Clinical Oncology (ASCO) recommend early integration of palliative care (Kaasa et al. 2018). These recommendations are aligned with the promotion of SDG 3 on Good health and well-being.

In 2018, ESMO proposed a series of key strategies to be undertaken by different stakeholders in order to address SDG 3 for cancer patients. Most of the strategies are focused on tumour-centred care, but the document reinforces the importance of palliative care as well, particularly on strategies for improving access for all patients (Prager et al. 2018).

Despite its evident benefits and endorsed recommendations, palliative care is still commonly associated with end-of-life care and is not routinely integrated in health care. From the point of view of the provision of care, the barriers that impede the integration of palliative care can be grouped into those related to the attitudes towards it, which can be traced back to misconceptions and misunderstandings of what palliative care entails, as well as social, economic, commercial, and organisational barriers for the provision of palliative care (Kaasa et al. 2018; Kaasa et al. 2022). Commercial interests and the dominating focus in society on continuing anti-cancer treatment and curation lead to futile treatments and increased consumption of pharmacological products, thereby challenging responsible consumption (SDG 12). Moreover, this attitude is reinforced by the medical and technological development that in turn increases the demand for treatment, as pointed out later in the chapter, and by the political agenda that promotes and prioritises cancer curation.

In addition, existing inequalities regarding the socio-economic status have an impact in the awareness, access, and use of the different health services, including palliative care. By improving education, and thus health literacy (SDG 4), it will be possible to increase equal access to good health care (SDGs 3, 4, and 10).

In order to overcome these barriers and work towards the integration and promotion of palliative care and patient-centred care, joint collaboration and drive between different stakeholders will be needed (SDG 17).

1.3.1 Lack of Awareness and Misconceptions

1.3.1.1 Patients, Caregivers, and the General Population

In a national survey performed in the United States, up to 70% of the participants indicated that they had never heard of palliative care (Trivedi et al. 2019). Even if the self-reported rates of palliative care knowledge seemed to rise over the years, it did not translate into an accurate understanding of what palliative care is. A study assessing what patient’s understood as palliative care indicated that half of the respondents associated palliative care with hospice and end-of-life care (Zhu and Enguı 2019).

Currently, most people who have not experienced first- or second-hand what palliative care is or who have not cared for someone with a serious illness struggle to understand the meaning of palliative care (Zimmermann et al. 2016). This is particularly true for patients with low health literacy (for example, those with cultural backgrounds or who speak languages which are different to that of their country of residence or have a lower level of education and lack of experience). Thus, there is a need for more widespread understanding of basic palliative care principles among patients, particularly those who may be less familiar with it due to lower levels of education.

1.3.1.2 Health Care Providers

However, patients and caregivers are not the only ones who struggle with the concept of palliative care. Healthcare providers frequently consider palliative care as equivalent to end-of-life care, viewing it as “passive and not offering hope” (Kaasa et al. 2022). As a result, healthcare providers working with care and life prolongation are reluctant to make referrals for palliative care.

A systematic review assessing the views of oncologists and haematologists on palliative care referrals showed that making the referral elicited negative emotions in the healthcare providers. Moreover, it identified role conflict, abandonment, rupture of therapeutic alliance, and loss of hope as some of the perceptions that could hinder such referrals (Salins et al. 2020). In other situations, healthcare providers believed that specialist palliative care can be easily provided by any physician or oncologist, and/or they have the self-efficacy to manage palliative care needs (Salins et al. 2020), thus considering a referral unnecessary (Salins et al. 2020; Kaasa et al. 2022).

These attitudes from healthcare providers reflect a lack of organisational health literacy, thus making it more difficult to truly enact shared decision-making and help patients make informed choices.

1.3.2 Palliative Care Competes with Tumour-Centred Care

The commercial determinants of health include social, commercial, and economic interests that shape the provision of care (Fig. 11.3).

Fig. 11.3
An architecture for the commercial determinants of health has the social determinants as death avoidance and low death literacy. The professional, economic, and commercial determinants are the school of medicine, marketing, and commercial interests. Political determinants are cancer plan and conquer cancer.

Commercial determinants of health. The interaction between social, commercial, economic, and political interests that lead to an increased focus on tumour-centred care. (Author’s own figure)

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1.3.2.1 Society Does Not Want to Talk About Death

We currently live in a society that perceives death as negative and a topic to be avoided, so much so that in the past decades, there has been an argument in the ongoing discussion that Western societies are death-denying societies (Zimmermann 2004). Currently, we consider medicine “the ‘fight’ against disease” and death “as having ‘lost the battle’” (Gellie et al. 2015), which, combined with an incessant marketing on staying young and healthy forever, makes talking about dying uncomfortable and also a taboo.

1.3.2.2 Medicine Taught in Curative Terms: Conquer Disease and Defeat Death

Medicine is frequently taught and framed in curative terms. The main goal is to cure the patient and conquer the disease, hence perceiving the inability to cure a failure, which in turn can lead to therapeutic obstinacy and futile treatments. In oncology, the erroneous perception of regarding ineffective treatment as a failure is predominant, thereby impeding the discontinuation of futile treatment, even when it provides no expected benefits and high toxicity. Provision of anti-cancer treatment and intensive end-of-life care is not in line with recommendations for good clinical practice by ASCO, WHO, and ESMO, and it leads to spiralling societal and health care costs and negative patient outcomes, as well as increasing demands for a cure from society at large.

Medical students are taught to cure the disease and less to care for the patient; especially, students receive very little, if any, training regarding end-of-life care. Moreover, when palliative care is understood as end-of-life care or a referral that takes place when “nothing else can be done”, clinicians consider the referral a therapeutic failure (Salins et al. 2020) and do not consider palliative care because it may entail “admitting defeat”.

1.3.2.3 Commercial Interests

Commercial interests also lead to an increased focus on the development and promotion of new and expensive drugs that benefit highly selected groups of patients. The tendency to oversee or underestimate the side effects of anti-cancer treatment, paired with marketing initiatives that claim that most cancers can be cured, reinforces the initiation of futile treatments (Kaasa et al. 2022), which does not adhere to a responsible consumption (SDG 12). New therapies have improved the survival rates of many cancers. These improvements have strengthened the perception that cancer can be “cured forever”. As a result, a stronger than ever focus on curation, prolongation of life, and medical advances prevails nowadays, resulting in funding being disproportionately allocated to tumour-centred care.

1.3.2.4 Political International Agenda

The latest international initiatives show that palliative care is still not a priority on the international agenda for improving cancer outcomes. In 2021, the European Commission delivered Europe’s Beating Cancer Plan (EBCP) (EU, EC 2021). The EBCP is a comprehensive strategy that includes ten flagship initiatives and supporting actions to improve cancer care around four key action areas: prevention, early detection of cancer, improved cancer diagnosis and treatment, and improved quality of life for cancer patients and survivors.

Likewise, the European Commission’s Mission on Cancer (Conquering cancer: mission possible) (European Commission et al. 2020) proposal covers the information and provision of resources around prevention, diagnosis and treatment, and quality of life for cancer patients. Palliative care is superficially mentioned in both initiatives; however, both plans fail to recognise the important role that palliative care has in the quality care of cancer patients (Caraceni and Apolone 2021).

Palliative care competes with tumour-centred care in terms of research but also in care provision. In the clinical environment, healthcare providers are influenced by the commercial determinants of health, and the societal, economical, and political spheres that promote tumour-centred care. As a result, the model that prevails is the tumour-centred care approach that focuses on explaining the disease and treatment options without considering the person living with the disease.

In addition, a tumour-centred approach combined with misconceptions about palliative care perpetuates the traditional palliative care approach (Fig. 11.4). In this setting, referrals to palliative care occur too late since it is considered passive and limited to end-of-life care, offered when there is no hope, with most clinicians experiencing feelings of abandoning the patient. Most importantly, they leave a high number of patients who need palliative care “unattended”, and with suboptimal consideration to their needs, falling short in terms of providing care for a good health (SDG 3).

Fig. 11.4
An illustration has 2 tables with headers, misconceptions about palliative care and tumor-centered care to cure the patient. They point to a rectangle for traditional palliative care with the diagnosis as treatment with curative or life-prolonging intention and death focused on end-of-life care.

Misconceptions about palliative care and the focus on tumour-centred care perpetuate the traditional approach of palliative care. (Author’s own figure, modified from “Integration of oncology and palliative care: a Lancet Oncology Commission” (https://doi.org/10.1016/S1470-2045(18)30415-7)

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To address this gap, public health demands, organisation of care, and priorities need to align with palliative care principles. Implementing palliative care into clinical practice will require a concerted effort (SDG 17) by health care providers, policymakers, and society as a whole to improve health literacy and an understanding of palliative care, prioritise patient-centred care, and advocate for sustainable development.

2 Health Literacy: Why It Is Important for Palliative Care

Low levels of health literacy have been identified among patients, caregivers, and healthcare professionals and have been linked to poor health outcomes, particularly in relation to palliative care, perpetuating health inequalities (Christensen 2016). An improved education (SDG 4) and health literacy, particularly related to palliative care, health, treatment, prognosis, and death, can contribute to reducing inequalities (SDG 10) and the better use of the healthcare services and palliative care in some specific elements. It can facilitate necessary discussions about death in our society and increase the understanding of what palliative care is and its role beyond end-of-life care. Health literacy can also improve the communication and shared decision-making between the healthcare providers and the patients, thus empowering patients to demand the right care for good health (SDG 3) and focus on what matters most when life “does not last forever” by engaging in advance care planning, which in turn supports a responsible consumption (SDG 12).

2.1 Talking About Death

Talking about poor prognosis, death, and dying, including preferences, hopes, and fears, is viewed as one of the most challenging discussions by healthcare providers in palliative care. Uncertainty about a given prognosis, lack of training, fear of negatively impacting the patient, and patient “readiness” to discuss these topics seem to be the most common barriers. Further, it represents a difficult personal situation for the individual care provider. However, in this context, more emphasis should be put on the positive impacts on the quality and satisfaction with care experienced by patients after they have end-of-life care discussions with the healthcare providers (Brighton and Bristowe 2016).

Developing education and literacy about death in the community through education activities and learning experiences can help normalise end-of-life (Noonan et al. 2016). Death literacy can be defined as:

The knowledge and skills that people need to make it possible to gain access to, understand, and make informed choices about end-of-life and death care options. People and communities with high levels of death literacy have context specific knowledge about the death system and the ability to put that knowledge into practice. (Patterson and Hazelwood 2022)

It has been suggested that providing informal care at home at the end-of-life can deepen the understanding and contributes to changes in attitudes and social actions around death and dying (Noonan et al. 2016). Caring and being involved in end-of-life care is a learning experience. It has been considered by the carers and their networks as a catalyst for learning about end-of-life care (Leonard et al. 2020). Moreover, community approaches in palliative care (considering the community as equal partners in the long and complex task of providing quality health care at the end of life) can improve the death literacy of our population and hence empower people to have more active and supportive roles in palliative care (Johansson and Eriksson 2023).

Finally, an open public discussion about what is meant by the ordinary concept of death can help both patients and clinicians to talk “openly” and encourage patients and families to participate in discussions about treatment goals (Gellie et al. 2015; Noonan et al. 2016).

2.2 Understanding Palliative Care: Perceptions

Being aware of all that can be achieved by palliative care throughout the trajectory of the disease can help both patients and healthcare providers understand why early referrals to palliative care are beneficial. It is important to bear in mind that the referral should not imply a separate care. Instead, it should translate into a closer collaboration with oncologists, other healthcare providers, and community care, with the patient at the centre.

From a patient’s perspective, low levels of knowledge of palliative care can lead to misunderstandings and confusion. When patients have not experienced or been informed sufficiently about the benefits of patient-centred care and palliative care (or caring for someone with a serious illness), they tend to associate palliative care with end-of-life care and react with fear and hopelessness upon the referral or involvement of palliative care during treatment. On the contrary, patients who have a reasonable understanding and/or have experienced what palliative care can do, have a more positive attitude (Zimmermann et al. 2016). Likewise, if healthcare providers understand and accept that palliative care is complementary and beneficial, also to the actual outcomes of tumour-centred care, they may be less reluctant to refer to specialist care when needed, integrating palliative care in the routine care of cancer patients (Fig. 11.5).

Fig. 11.5
An illustration has 2 tables with headers, understanding what palliative care is and patient-centered care to cure the patient. They point to a rectangle for integrated palliative care with the diagnosis as treatment with curative or life-prolonging intention and to improve the quality of life.

Accurate perceptions of palliative care and a patient-centred approach facilitate the integration of palliative care. (Author’s own figure, Modified from “Integration of oncology and palliative care: a Lancet Oncology Commission” (https://doi.org/10.1016/S1470-2045(18)30415-7)

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2.3 Communication and Shared Decision-Making

Effective communication and shared decision-making are essential for the delivery of high-quality palliative care.

Limited health literacy can impact the provision of care due to misconceptions about cancer as well as ineffective communication with the healthcare providers involved (Koay et al. 2012). In addition, these patients may struggle with filling in questionnaires or reporting outcomes, as well as reading, understanding, and applying information about their health and health care. Challenges in understanding their prognosis and treatment recommendations can impact their ability to make informed decisions. As a result, patients with limited health literacy may make “inappropriate” demands, receive unnecessary interventions, and adhere poorly to their recommended treatment.

Low levels of health literacy are associated with poor health outcomes. Patients who have low health literacy tend to have higher rates of hospitalisation and visits to the emergency room and fail to take medications appropriately. This includes not only poor adherence to treatment but also misuse of the medication, alongside worse symptom control, which is especially relevant regarding opioid use and pain control (Rogers et al. 2020).

Not only does limited health literacy lead to poor health outcomes but in addition it can perpetuate health inequalities (Christensen 2016). Patient empowerment, which involves an active role for patients in terms of their health, requires health literacy so that they can demand or request appropriate care and truly enact shared decision-making.

Informal caregivers play a crucial role in caring for patients. They tend to be family members or others who engage in the actual care work and social and emotional support and share the disease experience with patients (Gardiner et al. 2020). However, a study assessing the health literacy of caregivers found that many reported that they encountered difficulties in managing areas related to the use of medication and symptom recognition (Metin et al. 2019).

Due to their active and pivotal role of informal caregivers, it is of utmost importance that they have a clear understanding of the palliative care principles, the disease prognosis, and available care options to ensure they can provide optimal care, support the patient, and contribute to shared decision-making.

It is paramount that the patient’s level of health literacy is ascertained by the healthcare providers at the beginning of the care process, to ensure that the patient understands the characteristics of the disease, the prognosis, as well as the treatment objectives and potential side effects.

2.4 Advance Care Planning

Advance care planning provides patients with the means of ensuring that their preferences and wishes are identified and recorded, thus guiding any treatment and care when life is limited, and the disease is incurable. Advance care planning positively impacts the quality of end-of-life care and leads to a decrease in futile treatments and life-sustaining treatments: it prevents hospitalisations and increases the use of palliative care (Brinkman-Stoppelenburg et al. 2014). Additionally, it is viewed as a way of continuing shared decision-making even when the patient is no longer able to do so. The fulfilment of advanced care planning usually takes place after an event (diagnosis, recurrence, hospital or hospice admission, etc.) that marks a transition in the status of the patient’s health (Lund et al. 2015). However, it is still not routinely included in daily care. Time constraints are one of the most commonly claimed reasons by healthcare providers, coupled with insecurity, lack of education, and absence of training in this regard (Blackwood et al. 2019). Although there is limited data, advance care planning interventions tailored for limited health literacy patients increase knowledge regarding advance directives, preference for comfort care, and completion of advanced care planning documentation (Houlihan et al. 2022).

In conclusion, education (SDG 4) and health literacy play a crucial role in improving palliative care and patient-centred care provision. A collaborative effort (SDG 17) should be made to improve health literacy among patients, caregivers, and healthcare professionals to ensure effective communication and shared decision-making, and therefore improve health outcomes and contribute to well-being (SDG 3).

3 Improving Health Literacy

Improving health literacy can help reduce healthcare inequalities (SDG 10), as users with good health literacy can better navigate the healthcare system and access appropriate services and care regardless of socio-economic status. One step towards improving health literacy is the need for accessible and understandable patient education (SDG 4) resources in palliative care and oncology. Although the Internet is a popular source of health information, and frequently used by patients and carers, if misused or misinterpreted, it can be misleading. Moreover, when assessed, over 85% of available patient education materials about palliative care are above the recommended degree of difficulty for ensuring understanding (Prabhu et al. 2017). Patient education materials need to be designed at an appropriate level of complexity, as many patients may struggle to understand complex medical terminology and concepts.

This section provides an overview of some strategies that healthcare providers can use to help patients with limited health literacy access the best care (SDG 3), such as recognising the patient’s health literacy, using plain language and metaphors, and assessing understanding.

In order to facilitate the implementation of these strategies, organisational changes and collaboration between different stakeholders (SDG 17) will be necessary to ensure the appropriate training of healthcare providers at the undergraduate and postgraduate levels. These changes and collaboration can contribute to (increasing) organisational health literacy which in turn will facilitate the enhancement of patients’ health literacy and support patients with lower levels of health literacy.

3.1 Patients’ Health Literacy: Recognising and Adapting

To optimize the delivery of appropriate care, it is crucial to recognize when patients and their caregivers have limited health literacy. Healthcare providers tend to overestimate patients’ health literacy, missing chances to help patients understand medical information (Kelly and Haidet 2007; Christensen 2016). Implementing routine health literacy screening and assessment tools in clinical practice can help clinicians adapt communication strategies accordingly. A few simple questions about the patient’s level of knowledge about the disease may be effective and can set the agenda for further information. Moreover, it does not take much time and may prove effective during the actual consultation and follow-up.

3.1.1 Plain Language and Visual Aids

Difficulty in understanding medical terminology is one of the most frequent indicators of limited health literacy. Utilising plain language can help patients and caregivers better understand complex health information and engage in shared decision-making (Rudd et al. 2004). Thus, when meeting with patients with lower levels of health literacy, the use of plain language (using simple words, short sentences, and clear explanations) and avoiding technical and medical jargon should be prioritised.

Providing materials that are appropriate and tailored to a patient’s specific needs can further enhance understanding. It is important that healthcare providers invest time with the patient and caregivers, ensuring their understanding after they have read the information. Special attention should be given to providing effective communication with patients from different cultural backgrounds which requires an understanding of the patient’s cultural beliefs, values, and practices. Culturally sensitive communication involves showing respect, avoiding assumptions, and being open to learning from the patient about their unique perspective (Betancourt 2006).

Metaphors and visual aids (such as diagrams, charts, and illustrations) can help patients with limited health literacy better understand complex health information. Metaphors can prove useful particularly for supporting and promoting the understanding of challenging discussions. Zimmerman et al. designed the illustrated metaphor “palliative care is the umbrella, not the rain” as a tool for oncologists to better explain to patients what palliative care is, and as such, facilitate referrals. Their work, published in JAMA Oncology, aims to address frequent misconceptions that patients (and healthcare providers) have against palliative care, and that frequently act as a barrier to early referrals (Zimmermann and Mathews 2022).

A useful method for assessing the patient’s understanding of the information would be asking patients to repeat back to the clinician, in their own words, the information or instructions given to them. This method known as teach-back method allows clinicians to make any necessary clarifications, and it has shown to improve treatment adherence, self-efficacy, and disease-specific knowledge (Ha Dinh et al. 2016).

3.2 Assessing Understanding: Encouraging Patients and Families to Ask Questions and Seek Clarification

Patient and caregivers with limited health literacy are, frequently, reluctant to ask questions (Parikh et al. 1996; Katz et al. 2007). Healthcare providers should actively encourage patients and families to ask questions and seek clarification about their care and treatment options. They can prompt patients by asking open-ended questions or providing examples of relevant enquiries. This approach not only helps patients and families better understand their care but also allows healthcare professionals to identify areas of confusion and tailor their communication(s) accordingly.

Improved communication between interdisciplinary teams, including medical professionals, social workers, and patient navigators, can help support patients with limited health literacy. These teams can work together to address the diverse needs of patients and their families, ensuring that they receive comprehensive care and are empowered to make informed decisions about their treatment options.

3.3 Improving Communication and Shared Decision-Making: Training and Education Healthcare Providers

“The art of communication is to use the right tool for the right person at the right time” (Hui et al. 2018). Once limited health literacy is recognised, there are evidence-based approaches that healthcare providers can use to promote communication and shared decision-making. Healthcare providers identify communication difficulties, lack of training, and limited resources as major obstacles to providing effective palliative care (Kaasa et al. 2018).

Disclosing the disease is incurable, discussing prognosis, and palliative care referrals are conversations that physicians struggle to have and are associated with negative emotions and experiences (Brighton and Bristowe 2016). However, it can become easier for healthcare providers to tackle these needed conversations with patients when they have the right communication tools and guidance. Hence, clinicians should receive specific training regarding known effective techniques for improving communication (i.e. COMFORT communication training (Wittenberg et al. 2018)). This training should cover theoretical and practical aspects and should also be part of the curricula in all healthcare education programmes. Blended training programmes for clinicians have been shown to improve communication with patients with limited health literacy and increase patients’ understanding of their situation and involvement in decision-making (Noordman et al. 2022).

4 Can Digital Patient-Centred Care Pathways Lower the Bar for Patients and Caregivers with Limited Health Literacy?

There is a need for a new clinical approach with patient-centred care as the cornerstone, resulting in more patient involvement and an individual approach tailored to the patient’s needs. In patient-centred care, the focus is patients living with cancer as well as the disease, incorporating patient-centred and tumour-centred approaches. Patient-centred care does not only benefit patients but also benefits families, caregivers, the community, and healthcare systems.

Standardised clinical pathways have been proposed as a solution to implement patient-centred care in routine cancer care and are recommended by EU policy to ensure quality care (Albreht et al. 2017) through the continuum of cancer care; from screening and diagnosis, through treatment, to long-term monitoring and support in survivors and end-of-life care. Clinical pathways (European Pathway Association n.d.) represent a “set” of detailed steps that guide complex, and often multidisciplinary, decision-making processes, including provision and organisation of care processes within a care plan for a well-defined group of patients during a specific period. As such, these pathways provide a treatment plan for a given patient population and support the integration of clinical guidelines into local protocols and clinical practice. The pathway can be adjusted according to time or criteria-based progression.

Implementing pathways that combine the systematic assessment of patient-reported outcome measures (PROMs) with appropriate evidence-based care plans can result in improved patient-centred care. The use of PROMs in routine clinical care, with special attention to ensure understanding by patients with limited health literacy, is recommended by ESMO for all patients during systemic cancer treatment (Di Maio et al. 2022). PROMs aim to assess symptoms, functions, and health-related quality of life of the patients (Basch et al. 2017). Systematic retrieval of PROMs brings the patient’s voice directly into the consultation and provides a clearer picture of the patient’s needs and burdens. It is a multidimensional strategy that also takes health literacy into account because it listens to the patient, adapts to the patient’s needs, and includes actions to be discussed and agreed upon.

Funded by the EU’s Horizon Europe programme, MyPath (Cordis Europa 2022) is an implementation study that intends to incorporate patient-centred care into routine cancer care. To achieve it, the project aims to develop a digital solution based on patient-centred care pathways that combines a systematic PROMs retrieval (“listening to the patient’s voice”) paired with evidence-based recommendations. The implementation of pathways using digital solutions provides room for individualised care, adapting to the patient’s needs and preferences.

In MyPath, the established patient-centred pathways will support and standardise the optimal clinical process in daily practice. By pairing the digital PROMs assessment with the best available evidence for management, MyPath will ensure that the recommendations are tailored to each individual patient. Furthermore, the solution will aim to improve patient participation by providing the necessary tools for appropriate shared decision-making based on the patient’s needs, values, and preferences.

The implementation science methodology is the cornerstone of the project and will warrant that the patient-centred pathways are followed and incorporated into daily practice. This means that today’s clinical work processes must be adapted to a “new era” where modern Health Information Technology sets the framework for implementation.

In order to ensure appropriate communication and patient engagement, the patient’s health literacy should be assessed throughout the process. MyPath can assess the health literacy of the patient and provide the appropriate recommendations to guarantee that the healthcare providers are aware of it and adapt their communication skills. Moreover, for patients with limited health literacy, MyPath can also play a role improving their health literacy levels and care by:

  • Bringing the patient voice to the clinical consultation. By systematically collecting PROMs adapted to patients with different backgrounds and levels of health literacy, MyPath aims to bring the patient’s voice to the consultation, making sure all needs are assessed and addressed.

  • Guiding healthcare providers to provide patient-centred care and engage in shared decision-making. Combined with information from the clinical consultation and the electronic health records, the solution suggests patient-centred care pathways that the clinicians will share with the patient, ensuring shared decision-making.

  • Guiding patients and caregivers by:

  • Providing reliable resources and sources of information concerning the disease, prognosis, and treatment options.

  • Providing easily understandable recommendations for self-management.

MyPath will contribute to improved care for patients with incurable diseases. These patients experience a high symptom burden and unmet needs even at the time of diagnosis (Vogt et al. 2021). By assessing systematically symptoms, functions, and quality of life, as well as providing decision support for the clinicians, MyPath can help identify and provide patient-centred care for all patients, with referrals to palliative care when needed.

5 Conclusion

Palliative care is much more than end-of-life care. Focused on the physical, psychological, social, and existential well-being of the patient living with the disease, palliative care has been shown to improve symptom control, quality of care, and survival of patients when initiated early in the course of the disease. Moreover, it is aligned with several of the Sustainable Development Goals established by the United Nations – especially the ones concerning good health and well-being, and reduced inequalities.

Despite its benefits and the recommendations endorsed by international bodies, palliative care is still not routinely integrated in health care. Health literacy is a pivotal factor in palliative care, since it influences patients’ proper understanding of what is palliative care, as well as improved communication and shared decision-making that can lead to the appropriate care provision.

There are different solutions that healthcare providers can incorporate to assess and tailor clinical communications and decision-making for patients with limited literacy that can improve individual health literacy. In addition to these individual efforts, organisational changes and collaborations need to take place to ensure organisational health literacy. Clinical pathways support the integration of clinical guidelines and recommendations into clinical practice and have been proposed as a solution to ensure access to good care and quality care for patients.

MyPath, as an implementation project aiming to develop innovative digital patient-centred care pathways, will take health literacy into account to guide and tailor the communication and clinical interactions between the healthcare providers, the patient, and the caregivers and provide patients and healthcare providers with appropriate resources to improve shared decision-making, self-management, and treatment adherence. As a result, MyPath can contribute to both patient and organisational health literacy.