Palliative care and good death in acute diseases: a scoping review protocol

Introduction

Palliative care is provided for a person with an active, progressive and advanced disease who is in serious or life-threatening health conditions.^1,2 Palliative care aims to optimize the quality of life and addresses the physical suffering of the patient. Furthermore, the palliative care also aims to improve psychological, social and spiritual conditions for patients and their family members.^1–3 Palliative care involves a multidisciplinary team beyond healthcare professionals, including spiritual, psychology, and/or social worker team member.^4–6 Palliative care is designed as a person-centered and family-centered care, addressing each patient’s and family members specific conditions and needs.^7,8 There are two types of palliative care, namely terminal palliative care which focuses on the treatment of immediate disease symptoms, and early palliative care that provides patients and family members support for coping with the diagnosis and helps balance decision-making between values and preferences of the patient and realistic expectations of the outcome of treatment.⁹ In low to middle income countries, dissimilarity of access to palliative care shows great disparities in global health care.^2,10 The concept of palliative care is more commonly discussed and studied in chronic diseases, however, there is still lacking evidence on palliative care on acute diseases.

Acute diseases, such as infections, injuries, acute exacerbations of chronic illnesses, are sudden, rapid and severe diseases that last for a brief time period.^11,12 High mortality rate might be found on acute emergency admission, especially amongst the elderly with multiple co-morbid conditions.¹³ Therefore, palliative care should be an important component in acute disease management, particularly for severe cases.

The concept of palliative care is also closely related to perceived good death. Good death or successful dying is defined as the person’s preferences for the dying process. These preferences might include how, where, when, pain-free status of dying process.^14,15 The concept of good death also include who accompanied the person during the dying process, and the manner of facing death (i.e. awareness and readiness of the dying process, natural or sudden death).^14–16 Ironically, studies have shown that patients with contagious disease have been isolated from their family members due to hospital policies and many of them have a deep fear of dying alone.^15,17 Majority of people want to be with their loved ones when their life comes to an end.^15,18

Up until now, there have been limited summaries on the experience of palliative care and concept of good death in acute diseases. Further, there is a lack of information on the ideal concept of palliative care and good death in acute disease from the perspective of patients, family or caregivers, as well as healthcare providers. This scoping review aims to explore the concept of palliative care and good death for acute diseases from the perspective of patients, families, and providers, hence, depicting the existing palliative care and good death concepts, and providing recommendation on the ideal concept of palliative care and good death in acute diseases.

Protocol

This study focuses on exploring existing literature on the concept of palliative care and good death in acute illness among patients with critical or severe acute diseases and the family and healthcare providers. As for the context of this scoping review, all health facilities which provide palliative care for acute disease will be included. The literatures will be beyond specific types of studies, we think that the broader concept in scoping review will be more appropriate.¹⁹ To conduct this scoping review, the framework by Arksey and O’Malley will be used.²⁰ The framework consist of six steps: 1) identification of research questions; 2) identification of relevant studies; 3) selection of relevant studies; 4) data extraction and charting, 5) summary, analyses, and reporting; and 6) consultation with relevant stakeholders.²⁰ The search process, database creation and data extraction will be conducted from September to October 2021. The analysis and reporting will be carried out in December 2021 - April 2022.

Step 2: Identification of relevant studies

This scoping review includes the relevant studies based on the inclusion and selection criteria shown on Table 1. The format followed the Arksey and O’ Malley Framework.²⁰

The search strategy using keywords and queries can be found in Table 2. The literature search will be conducted in three databases (Pubmed, Scopus, and Science Direct) for articles published between January 2000 to October 2021, hence, providing a review of literature for the past 20 years.

Table 2. Keywords and queries for search strategy of acute disease palliative care and good death management (screening, diagnosis, treatment).

Topic	Keywords and queries
Palliative case	(“palliative care” [MeSH Terms] OR “palliative care” [All Fields] OR “supportive care” [All Fields]) AND (((“acute infections” [All Fields] OR “acutely infections” [All Fields] OR “acutes infections” [All Fields]) OR “acute infection” [All Fields]) (“palliative care” [MeSH Terms] OR “palliative care” [All Fields] OR “supportive care” [All Fields]) AND (“communicable diseases” [MeSH Terms] OR “infectious disease” [All Fields]) NOT (“non communicable disease” [All Fields] OR cancer [All Fields])
Good death	“good death” [All Fields]) AND (((“acute infections” [All Fields] OR “acutely infections” [All Fields] OR “acutes infections” [All Fields]) AND “infections” [MeSH Terms]) OR “acute infection” [All Fields]) ((“good” [All Fields] OR “good death” [All Fields]) AND (“communicable diseases” [MeSH Terms] OR “infectious disease” [All Fields]) (“dying well” [All Fields]) AND ((“acute infections” [All Fields] OR “acutely infections” [All Fields] OR “acutes infections” [All Fields]) OR “acute infection” [All Fields]) (“succesfull dying” [All Fields]) AND ((“acute infections” [All Fields] OR “acutely infections” [All Fields] OR “acutes infections” [All Fields]) OR “acute infection” [All Fields]) (“good end of life” [All fields]) AND ((“acute infections” [All Fields] OR “acutely infections” [All Fields] OR “acutes infections” [All Fields]) OR “acute infection” [All Fields]) (“good death” [All Fields]) AND (“communicable diseases” [MeSH Terms] OR “infectious disease” [All Fields]) AND NOT (“non communicable disease” [All Fields] OR cancer [All Fields) (“dying well” [All Fields]) AND (“communicable diseases” [MeSH Terms] OR “infectious disease” [All Fields]) AND NOT (“non communicable disease” [All Fields] OR cancer [All Fields) (“successful dying” [All Fields]) AND (“communicable diseases” [MeSH Terms] OR “infectious disease” [All Fields]) AND NOT (“non communicable disease” [All Fields] OR cancer [All Fields) (“good end of life” [All Fields]) AND (“communicable diseases” [MeSH Terms] OR “infectious disease” [All Fields]) AND NOT (“non communicable disease” [All Fields] OR cancer [All Fields)

The search strategy will use Medical Subject Heading (MesH) terms: “Acute Disease”, “Palliative Care”, and “Good Death” on the Pubmed database. An initial search with synonyms of those keywords will be used in the Scopus and ScienceDirect database. Next, analysis of the words contained in the title and abstract will be done. Clinical guidelines database and gray literature will be included and listed in Figure 1.

Figure 1. Steps of the searching strategy.

Step 3: Selection of relevant studies

Two authors will screen the titles and abstracts of studies according to the selection criteria. In the scoping review, we will include all studies that evaluate the acute disease palliative care and good death. We will exclude studies focusing on chronic disease. Quantitative, qualitative, as well as mixed methods studies will be included. We will also include guidelines on palliative care and good death found in the literature, to provide comprehensive view. Two authors will review the full text of selected studies independently. We will resolve disagreements on study selection and data extraction by discussion with one more reviewer if needed. The details of the study selection are depicted in Figure 2.

Figure 2. Steps of the article screening process.

Ethics and dissemination

We have obtained ethical permits for this review. The results of this review can be used as a reference for preparing a pilot study on integrated management of acute disease palliative care and good death management as well as policy briefs, presentations in conferences, peer-reviewed journals, and information on related websites.

Study status

This study is now at early stage of the step two of the scoping review process: identification of relevant studies. We are still searching for literature for relevant studies and abstracting data from the search engines. We estimated the scoping review to be completed by mid-2022.

Data availability

No data are associated with this article.