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Introduction
Due to the increase in disabling and irreversible chronic diseases, it is essential to adopt clinical and therapeutic strategies that offer the population a more adequate approach to their problems, including management of signs and symptoms, intervention in advanced disease and at the end of life (Grande et al., 2009). For the World Health Organization (WHO) by 2060 the number of people in need of this level of care will double, with approximately 56.8 million people needing this type of care worldwide and 25.7 million in the last year of life (World Health Organization, 2020). It is estimated that in Portugal, on average 82737 people need palliative care (Comissão Nacional de Cuidados Paliativos (CNCP), 2019).
Palliative care is a clinical approach whose objective is to improve the quality of life of people with advanced or end-of-life disease throughout their life cycle as well as their families in light of the problems inherent to their clinical condition (World Health Organization, 2020). The aim of this approach is to prevent and alleviate suffering with early detection, correct assessment and therapeutic intervention of pain and other problems, whether physical, psychosocial or spiritual; and, access to this care must be strengthened in health systems (World Health Organization, 2020). This care is organized around ten structuring pillars: self-help and support, the involvement of beneficiaries, facilitation of information, psychological support, symptom control, social support, rehabilitation, access to complementary therapies, spiritual support, and end-of-life care and throughout the grieving process (Rosser & Walsh, 2014).
In a culture of quality assessment, it is important to define indicators of quality of care in palliative care that allow for continuous improvement and benchmarking (Capelas, 2014).
The strategy of assessing the quality of palliative care involves the development of a culture of safety, assuring the health team is staffed with properly trained members, preventing avoidable deaths, being proactive in non-maleficence, improving the experience of beneficiaries of palliative care towards better outcomes, and ensuring that people with advanced disease or end-of-life care receive care at the most appropriate location (NHS Finance and Operations, 2016).
Considering the ethical duty of health professionals to provide the best care, whether to people with advanced disease or at the end of life, or to family members and significant others, as well as their interdisciplinary nature, it is imperative to listen for satisfaction with palliative care from the perspective of its main beneficiaries (Capelas, 2014; Parker et al., 2013). This assessment is also considered one of the indicators of quality of care provided in a context of accountability and continuous improvement (Ornstein et al., 2017; Parker et al., 2013).
Quality monitoring is based on eight domains, and the assessment of satisfaction from the perspective of the person with advanced disease or at the end of life or of their family members is present as an indicator of results in three domains, namely: the Structure and Process of Care, the Psychological and Psychiatric Aspects of Caring, and Caring for the Patient in Imminent Death (Capelas, 2014).
There is no clear definition of what is meant by satisfaction with care, as palliative care is organized into different levels and teams, leading to differences in the components of care and in the dimensions of quality of care (Observatório Português de Cuidados Paliativos, 2018). However, the studies carried out show that this is affected by relationships with the team, education and knowledge, the perception of emotional support, the individuality of care, the recognition and competence of the team, communication, and coordination of care (D’Angelo et al., 2017; McDarby & Carpenter, 2019). It is known that the assessment of this indicator with people with advanced disease or at the end of life can be difficult due to their clinical status, or the side effects of medication (Ornstein et al., 2017; J. A. Teresi et al., 2014).
Considering the reality of palliative care in Portugal in the Structure and Process of Care domain, it is essential to understand the satisfaction related to care/response to the patient’s needs/problems, the human care with which the patient was approached, the proximity of the supervision that was carried out to the patient, the conditions offered, the coordination of the information made available, the methodology of information transmission, listening, availability of the team, keeping the person and family informed about their clinical situation, respect for the patient’s therapeutic preferences, coordination of care, and waiting time for admission/consultation. Looking at the Psychological and Psychiatric Aspects of Caring domain, family satisfaction with controlling their loved one’s anxiety/sadness is a result indicator (Capelas, 2014). As for the Care for the Imminent Death Patient domain, it is important to monitor the family’s satisfaction with the continuity of the information provided about the evolution of the patient’s clinical status, and with the information provided by the team regarding therapeutic approaches for symptomatic control of the patient during the phase of agony (Capelas, 2014).
Given the above, and the gaps found concerning the factors that influence the assessment of customer satisfaction with palliative care, the aim of this scoping review is to synthesize the scientific evidence on the factors that influence the assessment of customer satisfaction with palliative care and identify the instruments used for its assessment.
This review follows the recommendations of the Joanna Briggs Institute (JBI) (Peters et al., 2020). The questions that guide this review are: how the evidence on the assessment of customer satisfaction with palliative care is presented (number of studies, their characteristics and data collection instruments used); and what is known about the factors that influence the assessment of customer satisfaction with palliative care (what this phenomenon means and what factors influence customer satisfaction).
1. Methods
Taking into account the review question and its aims, a scoping review was performed. Considering the protocol and standardization of elaborating a scoping review, which assumes methodological rigour, transparency and reproducibility, the JBI recommendations for this type of review were followed (Peters et al., 2020). Moreover, this article is organized following the PRISMA-ScR checklist (Tricco et al., 2018).
The PCC (Population, Concept and Context) mnemonic was used, according to the JBI recommendations for scoping reviews to define the inclusion criteria of the articles (Peters et al., 2020).
P - The review includes studies carried out with people or relatives of people at the end of life or advanced disease, over 18 years of age. No restrictions on gender, ethnicity, clinical diagnosis or other personal characteristics were applied.
C -The review focuses on studies on the assessment of beneficiary satisfaction with palliative care.
C - The review is limited to inpatient palliative care settings, palliative care community support teams and with hospital palliative care support teams. There will be a restriction imposed on studies carried out in the context of paediatric palliative care. Primary studies of the qualitative, quantitative and mixed type, and secondary studies of the systematic literature review type and narrative reviews that answer the research question were considered. Text and opinion documents were also searched for inclusion in the review. Only references written in Portuguese, English, and Spanish without time restriction were considered.
Before identifying potentially relevant studies, the search terms were determined according to the investigation question. In this respect, the electronic research was performed on Scopus, CINAHL complete and Web of Science using the following terms ("family satisfaction" OR “Patient Satisfaction”) AND (“Palliative Care” OR Hospice and “Palliative Care Nursing” “Palliative Medicine”). The bibliographic search was carried out in July 2021. A search of the bibliographic references as well as a search of the grey literature in OpenGrey and Dart-Europe was conducted using the same terms.
The search was carried out independently by two researchers and 387 articles were found. After the research, the studies were exported to the Zotero software where duplicates were eliminated.
The selection of articles was carried out in two phases. In the first, the titles and abstracts were analysed and those that did not meet the inclusion criteria were eliminated. In the second phase, the articles that apparently met the inclusion criteria were retrieved in full and the details of the studies, characteristics and results were extracted to the JBI extraction table (JBI SUMARI). This phase was carried out independently by two researchers who carried out the complete analysis of the texts to assess the consistency of the results with the research questions and the objectives defined.
2. Results
We identified 377 references in the databases and 10 references in the grey literature repositories, as evidenced in the PRISMA flow diagram (Figure 1).
Forty articles were considered for data extraction. Analysing the published articles, it appears that the year with the most publications was 2015, with five articles, followed by 2020, 2017, 2018 and 2013 with two articles each year.
Regarding the countries where the studies were carried out, the United States of America leads publications with 12 articles (Gade et al., 2008; Gelfman LP et al., 2008; Huen et al., 2019; Miceli PJ & Mylod DE, 2003; Ornstein et al., 2015, 2017; Paramanandam et al., 2020; Parker et al., 2013; Roza et al., 2015; Strasser F et al., 2004; J. Teresi et al., 2015; J. A. Teresi et al., 2014). In Europe, 12 articles were published, one of which was a multicentre study and only one was carried out in Portugal (D’Angelo et al., 2017; Flöther et al., 2021; Korfage et al., 2020; London & Lundstedt, 2007; Parpa et al., 2017; Proot I et al., 2006; Ribeiro et al., 2020; Ringdal et al., 2003; Sandsdalen et al., 2019; Thery et al., 2021; van Soest-Poortvliet et al., 2015; Vitacca et al., 2019). The remaining studies are distributed geographically across Oceania, the Middle East, Canada and Asia.
From the methodological analysis of the articles, most studies presented are methodological studies (eight articles), followed by randomized controlled and quasi-experimental studies, both with five articles. The remaining methodologies focus on retrospective, exploratory, observational, correlational, mixed, descriptive, transversal, qualitative studies and systematic literature review.
Below, a simplified data extraction instrument is presented, in the form of a table, which includes the most relevant data that were mapped based on the question and objectives of this review.
3. Discussion
In this review, we have tried to understand how the scientific evidence on assessing customer satisfaction with palliative care is presented, finding that the population included in the different studies, mostly people with advanced or end-of-life disease, had oncological diseases, with only one study being carried out with relatives of people diagnosed with dementia (van Soest-Poortvliet et al., 2015) and another with people diagnosed with chronic obstructive pulmonary disease in an advanced stage (Vitacca et al., 2019). Palliative care is mostly associated with oncological disease, so the results suggest a need for a paradigm shift.
Regarding the factors influencing the assessment of satisfaction, they can be grouped into five themes, four of which are included in the customer satisfaction assessment scale most often used in studies, FAMCARE, including Availability of Care, Physical Care, Psychosocial Care, and Communication of Information (Ribeiro et al., 2020). We also found that the meaning of satisfaction with palliative care in most studies presents results in line with Capelas (2014) in the domain of Structure and Process of Care, with the most evident dimensions of meaning relating to therapeutic preferences (symptom management), care/response to the patient’s needs/problems, team availability, waiting time for admission/consultation and communication (Alshammary et al., 2020; Huen et al., 2019; Paramanandam et al., 2020; Vitacca et al., 2019). However, the most widely used measurement instrument for the assessment of satisfaction, FAMCARE, does not allow one of the domains mentioned by Capelas (2014), with regard to Caring for the Patient in Imminent Death to be assessed. Only one study referring to the assessment of this domain was found (Fakhoury, 1998).
This domain that needs evaluation is a key element in the relationship between health professionals, people with advanced or end-of-life disease and their families, and in the moment of agony, communication based on the truth is essential to strengthen the therapeutic relationship (Andrade et al., 2013). Among all the barriers to communication in palliative care, the most frequently identified are related to health professionals’ lack of time, the ambivalence or lack of openness to discuss the diagnosis and prognosis by the parties involved, the feeling of a lack of honesty on the part of health professionals regarding these same issues, and the demonstration of health professionals’ difficulty in talking about death, as it is a factor that influences satisfaction with care, particularly from the perspective of family members (Slort et al., 2011). It is known that about half of the relatives of people with advanced or end-of-life disease would like to have more information about possible scenarios or outcomes, including the possible death of the patient. And those with initial resistance, later stressed that they would have liked to have obtained this information and would have benefited at the time of mourning (Krawczyk & Gallagher, 2016). In the long term, these results led to the positive experience of mourning, in the feeling of well-being and absence of feelings of guilt.
It is worth noting that from the analysis of the articles, in addition to the three domains of satisfaction with palliative care identified by Capelas (2014), we identified a new domain of influence on satisfaction, namely the personal characteristics of the person with advanced disease or at the end of life and of family caregivers. With regard to this domain, the articles show that characteristics such as gender, age, race and educational level influence satisfaction with palliative care. In this sense, the female gender, the Caucasian race, the older age of the person and caregiver, and higher educational level are associated with greater satisfaction with palliative care (D’Angelo et al., 2017; Ornstein et al., 2017; J. Teresi et al., 2015).
From an in-depth analysis of the articles, and crossing with the three satisfaction domains identified by Capelas (2014), it appears that the domain of Psychological and Psychiatric Aspects of Caring is one of the domains mentioned with less satisfaction (Lo C et al., 2009; Ribeiro et al., 2020), demonstrating that from the perspective of family caregivers and even of people with advanced disease, symptom control is one of the dimensions of greatest satisfaction, overshadowing the psychological dimension of care (Flöther et al., 2021; Ng & Wong, 2018).
Integration in structured palliative care programs centred on managing signs and symptoms and communication is crucial to improving satisfaction with palliative care and is referred to in the literature as having a positive impact, not only on satisfaction with care, but also on quality of life and in mourning. Monitoring the person at the end of life by a specialized multidisciplinary team is associated with better satisfaction as there is better monitoring, greater availability, recognition of skills and, consequently, an improvement in the management of signs and symptoms (Chan et al., 2014; Detering et al., 2010).
The results of this review must be analysed considering some limitations. Regarding the research keywords, only the terms widely used in the literature were considered; however, some relevant terms may have been excluded, leading to the exclusion of other studies. The inclusion of articles only in English, Portuguese and Spanish potentially excluded relevant studies in other languages.
Conclusion
In the present review, we found that the most widely used measurement instrument to assess quality of life in palliative care is FAMCARE.
The domains of satisfaction with palliative care included in the literature include the Structure and Process of Care, the Psychological and Psychiatric Aspects of Care; however, the domain of Care for the Imminent Death Patient is practically absent from the objectives and results of the articles found.
It was possible to identify a new domain that influences satisfaction with palliative care, the personal characteristics of people with advanced or end-of-life disease and family members, which should be considered not only in the assessment of satisfaction, but also in the adequacy and personalization of palliative care.
