Corresponding author: Sry Suryani Widjaja, MD, PhD. Biochemistry Department, Medical Faculty Universitas Sumatera Utara, Medan, Indonesia. Address: Dr, Mansur street No. % Medan-Indonesia, di.ca.usu@inayrus.yrs ORCID ID: http//www.orcid.org/0000-0001-9738-9339.
Received 2022 Oct 10; Accepted 2022 Oct 20. Copyright © 2022 Sry Suryani Widjaja, Rusdiana, Vito Filbert Jayalie, Rina AmeliaThis is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0/) which permits unrestricted non-commercial use, distribution, and reproduction in any medium, provided the original work is properly cited.
Palliative care has an important role in cancer treatment. It has been established in Indonesia for years, however, palliative care does not give significant improvements which may due to the numerous components of palliative care.
This research aims to identify factors affecting palliative care in Indonesia.
This article is a literature review which was conducted through a systematic search from four online databases: Cochrane, Pubmed, Embase, EbscoHOST. The search revealed 45 studies then selected using PRISMA 2020 algoritm, leaving 8 studies to be analyzed. The factors affecting palliative care in Indonesia were then grouped into three points of view: the patients and caregiver; healthcare provider, further divided into healthcare personnel and system; as well as healthcare system. By knowing these factors it is expected that we can achieve optimal implementation palliative care in Indonesia, especially in cancer patient.
The factors influencing palliative care in Indonesia can be grouped into patients, healthcare provider and healthcare system.
Palliative care improvement in Indonesia can be enhanced to achieve optimal implementation in cancer treatment.
Keywords: Palliative care, cancer patients, implementation, IndonesiaCancer is one of the notorious diseases in the world. The range of variety, the complexity of the disease, the continously developing treatment and the patients prognosis are still captivating to be discussed. In 2020, worldwide estimation of cancer new cases is 19.3 million and estimation of cancer deaths is 10 million. About 58.3% cancers deaths is estimated to occur in Asia (1). Indonesia has 396.914 new cases and 234.511 cancer-related deaths (2). Cancer prevalence from 2013 to 2018 increased from 1.4% to 1.49% (3). In Indonesia national referral hospital, the common patient characteristics were female, older than 39 years of age, and have advanced stages (4). Cancer treatment ranges from curative to palliative treatment. Curative therapy is mainly understood as a therapy for disease eradication, and palliative care is focused to alleviate the patient’s symptoms (5). Palliative, from the word ‘to palliate’, means reducing the intensity without removing the disease itself (6). Palliative therapy is defined by World Health Organization (WHO) as an approach focusing in the quality of life improvement in patient and familly with life-threatening illness, chronic, complex and life-timing health problem (7, 8). This makes palliative treatment no less important than the curative treatment. Palliative care is often simplified as relieving pains in patients. Although pain is indeed one of the most frequent and serious symptom in patients who need palliative care, the essential practice in palliative care encompasses physical, psychological, emotional or spiritual care, care planning and coordination, as well as communication (8, 9). It is aimed at alleviating patient suffering and giving support to their family due the presence of physical or psychological symptoms, social and spiritual disturbance (6). Palliative care has been an ongoing development since first introduced in Indonesia in 1992. The development is relatively slow and palliative care is mostly available in big cities where cancer treatment is provided (10). This might be caused by the various components needed in palliative care. Although palliative care is frequently associated with cancer, and observing how palliative care in Indonesia at the present time, a more extensive search about its condition in any applicable disease is thought to be more suitable. Palliative care is also needed in other cases such as benign tumour, stroke and post-surgery patients (11).
The objective of this study is to identify the factors that affecting palliative treatment in Indonesia. Understanding the factors affecting palliative care in Indonesia can optimize palliative care improvement acceleration in Indonesia and can be expected to give impacts on cancer patients.
Search strategy
This review was conducted at April 10 th , 2022 through four online data bases, which are Cochrane, Pubmed, Embase, EBSCOhost. Keywords were arranged using suitable formulation based on Boolean search operation. The article searching strategy is provided in Table 1 .
| Electronic database | Keywords | Hints |
|---|---|---|
| Cochrane | (palliative care):ti,ab,kw AND (factor):ti,ab,kw AND (Indonesia):ti,ab,kw | 1 |
| Pubmed | (“Palliative Care”[Mesh]) AND “factor” AND “Indonesia”[Mesh] | 1 |
| Embase | ‘palliative care’ AND ‘factor’ AND ‘Indonesia’ | 28 |
| EBSCOhost | palliative AND factor AND Indonesia | 15 |
| No | Study reference | Region | Sample (number, age, illness) | Findings |
|---|---|---|---|---|
| 1 | Arisanti, 2019 21 | Bandung | 17 healthcare professionals (12 physicians and 5 nurses) | Based on healthcare personnel’s point of view: contribution from family and environment, number and skills of healthcare personnel, accessibility of care, case management and healthcare system |
| 2 | Aziza, 2018 15 | Central Java and East Java Province | 100 parents of children with cancer, 20-56 years old | Unmet supportive care need – mostly information about their children condition-, psychological distress (anxiety and depression) |
| 3 | Effendy, 2022 24 | Yogyakarta Region | 124 patients with non-communicable disease | Prompt identification of palliative care needs -screening using SPICT tool- is needed |
| 4 | Kristanti, 2019 14 | Jakarta, Surabaya, Yogyakarta Region | 24 caregivers of cancer patients, ≥ 18 years | Caregiver commitment affected by belief in care giving (spiritual and religion aspect) and social support |
| 5 | Sari, 2018 13 | Yogyakarta and Purwokerto Region | 178 caregivers of advanced-cancer patients, >17 years old | Burden among family caregivers (patient is male, caregiver is older, married with symptoms of illness, low income, lower education level, longer time spent taking care of the patient) is higher |
| 6 | Shatri, 2019 19 | Jakarta | 300 palliative patient | Patient’s and family understanding of patient’s diagnosis, treatment, and prognosis. Mostly chose optimal care |
| 7 | Shatri, 2019 28 | Jakarta | 285 patient, cancer and noncancer patient group | Woman, elderly and unemployment most group of pain. Psychological factors -specially depression- affect pain perception, spiritual service reduce pain significantly |
| 8 | Shatri, 2020 16 | Jakarta | 175 patients, adult (>18 years old) | Adequate pain management will improve quality of life and important in palliative care, mild pain treated with NSAID, mild to moderate treated with NSAID and week opioid |
Selection criteria
Article selection was first conducted through applying the inclusion and exclusion criteria. The inclusion criteria of online published articles used in this search are: (1) The research over the last five years; (2) the studies regarding contributing factors on palliative therapy; and (3) research focus location was in Indonesia. The exclusion criteria are (1). Articles were not written in English or Bahasa Indonesia, and (2) Full-text article was not provided
Data extraction
Literature searching via the four online database results in total of 45 articles. Duplicated articles were manually screened and removed, leaving 36 articles to be reviewed based on title and abstracts.
The prior screened studies then be selected based on their full text suitability on the provided inclusion and exclusion criteria. The final number of articles identified for this review are 8 articles. This study use the preferred reporting items for systematic reviews method (PRISMA) 2020 guidelines and the PRISMA flow chart of this study is provided bellow in Figure 1 .
Based on the literature searching, palliative care in Indonesia is affected by several factors. These factors can be divided into three points of view: patient and caregiver, healthcare provider and healthcare system.
Caregivers play important role in palliative care, as most patients may require assistance in their daily needs. Therefore, caregivers condition contribute to the palliative care continuity and becomes one point of interest in this review. In Asian culture, caring for the ill family is considered as an obligation. This culture background becomes the reason why most caregivers are the patient’s family (12, 13). The most common reason someone becomes a family caregiver in Indonesia is a combination of spiritual and religious values and motivation. The religious belief of being rewarded in their future life or heaven due to taking care of the patiens seems to be a strong drive for the caregiver to carry out their duty. They do take caregiving as an obligation wraped in a positive way which becomes their motivation (14).
Caregiver is in charge of helping patient in daily selfcare and activities, giving medication and treatment’s based on physician’s direction, reporting patient condition to health care professional and also identifying and reporting any additional signs or symptoms (6). Being a caregiver also means changes in the caregiver’s life and burden as well (12, 13). The burden among family caregiver of advanced-cancer patients might be caused by several factors. Caregivers who take care of male, older patients with longer time spent taking care of the patiens was found to have greater burden. The background and condition of the care giver such as: married, with lower education level, and low income. Caregivers with symptoms of illness, also contribute to the weight of the burden. One factor which can elevate the burden of family caregiver is if family’s support is present (13). Practical social support, either from family, friends, social network or workplace, is considered as a valuable back-up to ease their burden (14). These burden may cause psychological distress such as anxiety and depression (15, 16). Anxiety caused by the need to consult the health professional or to undergo a certain medical procedure may become the reason why patients seek alternative treatment and get delayed treatment (17, 18).
Caregivers are found to have unmet supportive care needs. One of the most unmet needs is a need for information related to patient’s condition. The concerns are the possibility of patient deteriorations, lack of supportive services, poor prognosis, unexpected recovery and wishing receiving possible best medical care (15). Family’s knowledge about patient’s condition, especially their prognosis, may influence treatment option either optimal or non-optimal therapy which is then divided into withholding and withdrawing therapy. The knowledge also affects family choice in do not resuscitate (DNR) decisions (19). Patient and family’s knowledge seem to be an important factor in palliative care. Patient and family’s understanding about the disease is important to the management of palliative care. It is found that patient’s family has better understanding (19). This might be related with a perception in many developing countries, that says diagnosis and prognosis disclosure to patient, especially information related to near death, better be prohibited. It it believed that those kinds of information may deteriorate patient’s psycological condition. However, patients quality of life (QoL) can be positively affected following patiens’ acceptance of their diagnosis (20). Patient’s insight shows improvement with intervention by palliative care team. Intervention should be done alongside with an in-depth knowledge about their cancer journey, containing treatment and available support (9).
Healthcare provider: Personnel and case management
Personnel
Palliative care provider ideally consists of multidisciplinary, ranging from all levels of care. The team may include oncologist, internal medicine doctors, radiotherapists, pharmacists, social workers, nutritionists, and palliative care nurses. However, in low resource settings, the essential providers are community health workers or trained volunteers (8). Healthcare personnels should have adequate skills in delivering palliative care. Notebly needed skills by healthcare professionals are emphaty, communication, decision-making and self-confidence (21).
As mentioned above, lack of information is one of the most common patients’ unmet needs. The unmet needs in patient’s condition is related to the limited time health care professionals can provide (14). Paternalistic communication pattern between patient and healthcare providers may cause inferiority in patient’s side due to their background, patient’s preference to avoid consultation which may lead to conflict and patient’s wish to be directed by the doctor. These may also influence the amount of information received by the patient (22).
Case management
In managing palliative patients, effective case management is required. The management including case notification, comprehensive care, interdisciplinary collaboration, integrated care and until patient’s follow up (21). These managements should be in accordance with patient wish such as the presence of patients advanced directives (AD), written or verbally, and durable power of attorney (DPO). AD is a documented patient direction or wishes about which treatment should be done if patient is incapable of decision making. DPO is defined as another form of AD which containing direction patient surrogate in the mentioned condition. AD is considered as important in palliative care (23).
Since palliative care should be started as early as possible, case notification or determining which patient needs palliative care is needed (21). A study by Effendy, et al. showed that more than 60% hospitalized non-communicable disease patients need palliative care. On one hand, early identification of palliative care needs in non-communicable disease patients will improve patients’ quality of life by hastening earlier palliative care. On the other hand, this is challenging because healthcare professionals may have different standards about when to start palliative care. Screening tools, for examples the Supportive and Palliative Care Indicators Tool (SPICT), may be used to eliminate this matter (24). Other method to achieve standardization is by improving palliative care staff competency. The plenty number of online tools allow staff to develop new sets of knowledge and skills, even from home (25).
Treatment adequacy affects the goal of palliative treatment which is enhancing patients’ quality of life. Pain is one of the most common complained symptoms in these patients. Inadequate pain management is found to be gravitating to the adults and elderly patient (16). Though consideration in which pain medication should be given sometimes tricky, the regimen of choice can be adapted from WHO step ladder (26). The facility availability also affects palliative delivery. As in cancer cases which need palliative care in form of radiotherapy, the sufficiency of sources is required. Infrastructure and manpower in radiotherapy (RT) vary widely across different country. RT machines and radiation oncologist availability is found to be higher in the higher-income countries compared to the lower-income countries (27). As mentioned above, palliative care patients need comprehensive care, interdisciplinary collaboration and integrated care. One of the examples is managing pain. The reciprocal relationship between pain and patient’s psychological condition should be understood. As pain perception may be affected by psychological factors, inadequate pain management may also cause further psychological disturbance (28). If patient in pain management complain any psychological symptoms, referral to psychiatric department is suggested (16). Based on this perception, Shatri, et al. conducted a research concerning the significancy of collaborative practice in palliative patient with pain management. The research was focusing on patient receiving opioid, spiritual service and combined therapy. Most patient chose to receive opioid management (28). The lack of spiritual support in end-of-life patient may be due to the lack of training in medical care about patients’ spiritual needs (29). The study showed there was a statistically significant result in patient receiving different therapy (28). Spirituality is found to be positively affecting cancer paitent’s pain outcome by better ability in coping with their condition, give better mood, social support, positive and realistic expectation, self-efficacy, cognitive reappraisal and healthy attachment to identifed spiritual figrues (20, 30). In end-of-life care, spiritual or religion plays important role in medical decision-making and also influences patiens’ QoL and aggressive care at the EOL by reducing patients’ distress (29). Spiritual services in pain management in palliative care is expected to reduce pain significantly (28).
Healthcare system
Hospital may provide palliative care for short term. The long term care requires the involvement of other institutions such as nursing or residential home, general practitioners, volunteer hospice services, and home palliative care teams. Palliative care at different levels has important functions in palliative care comprehensive system (8). This shows how incorporating palliative care requires healthcare management in a better system. Concerns are focused on policy, standard and guideline, drugs availability, networking, financing, quality assurance and legal aspects (21). The accessibility to health care facility also plays an important role in the implementation of palliative care. Difficult access may be caused by geographical conditions, lack of information and lack of socialization (21). Palliative care program can be delivered effectively with the public health support of the stakeholders. This can be achieved by integrating palliative care in the national health system, providing professional care and community empowerment, providing facilities and infrastructures for pain and psychological symptom management, facilitating the accessibility for those who needs the palliative care and integrating palliative care in every steps of patient management (6).
Palliative care in Indonesia was introduced around three decades ago, but has not showed significant improvement. This might be due to existence of many components which should be paid attention to in palliative care. The factors influencing palliative care in Indonesia found in this review can be grouped into patients, healthcare provider and healthcare system.
SSW, VFJ, gave a substantial contribution to the conception and design of the work. RD, RA gave a substantial contribution of data. SSW, VFJ, RD, RA gave a substantial contribution to the acquisition, analysis, or interpretation of data for the work. SSW, VFJ, RD, RA had a part in article preparing for drafting or revising it critically for important intellectual content. All authors gave final approval of the version to be published and agreed to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
There are no conflicts of interest.
