Embracing Family Presence: Exploring the Reason of Family Decision Making Dependence on in-hospital Palliative Care for Cancer Patients

doi:10.21203/rs.3.rs-3020176/v1

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Research Article

Embracing Family Presence: Exploring the Reason of Family Decision Making Dependence on in-hospital Palliative Care for Cancer Patients

https://doi.org/10.21203/rs.3.rs-3020176/v1

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Purpose:The implementation of home-based palliative care has been recognized as a commendable care model. However, it is noteworthy that families residing in Indonesia exhibit a propensity to predominantly seek palliative care services within hospital environments for their family members afflicted with palliative cancer. Therefore, this research’s aims is to explore the family members' perceived in their decision-making process of caring for the patients at the home of palliative cancer patients.

Method This study qualitative study used a descriptive phenomenological approach. Data were obtained through in-depth interviews with 10 Indonesian family members of the palliative cancer patients refusing the discharge and analyzed by using the Collaizi method. Furthermore, the Inclusion criteria were a dominant family who cares patient and lives with patient.

Results Three themes emerged in this study; are (1) lack of support in the decision-making, (2) Families rely on hospitalsand (3) pain and chronic sorrow.

Conclusions Nurses should engage in collaborative partnerships with healthcare providers to inform about patient condition and goal of care. Nurse also need to facilitate families' decision-making processes regarding home palliative care.

Implications for cancer survivors: The implications of this study align with the nursing profession's commitment to patient-centred care and the promotion of shared decision-making. By actively involving family members in the decision-making process and supporting their emotional well-being, nurses can contribute to enhancing the overall quality of care for palliative cancer patients in the home setting.

Decision making

Family

Home care

Palliative care

Cancer is the second leading cause of death in the world after cardiovascular disease (1). Indonesia, being the fourth most populous country globally with a population of 270,203,917 as of 2021, faces a significant burden of disease, comprising the highest percentage in non-communicable (58%) ailments. Among these, cancer stands out with an incidence rate of 14 cases per 1,000 individuals. Alarmingly, the number of newly diagnosed cancer cases was projected to escalate to 19.3 million by 2020 in Indonesia, resulting in approximately 10 million deaths directly attributed to cancer.(1, 2)

The majority of the cancer patients in Indonesia come to the health care services at the advanced stage(3). The primary focus of caring for patients in advanced stages of cancer is to provide palliative care, and there is a growing consensus advocating for the delivery of palliative care in home settings. (4). Research findings indicate that home-based palliative care offers numerous advantages, such as enhancing cost-effectiveness in healthcare, mitigating the risk of hospital-acquired infections, improving the quality of life for patients, and providing greater convenience for both patients and their families. (5).

There is a preference among the families of palliative cancer patients to provide care at home. However, the decision to bring patients home can pose challenges for the family(6). Nurses play a crucial role in supporting families and offering necessary information to help them determine the most suitable care setting for palliative cancer patients (7). It is essential to provide families with comprehensive information that includes an understanding of the advantages and disadvantages of extended hospitalization (8).

The decision of some families to decline home-based palliative care can negatively impact the quality of life for patients. Hospital regulations, although unintentional, may limit the freedom and convenience of patients to spend meaningful time with their families(9). As a result, hospitalized palliative cancer patients may experience distress, feelings of loneliness, depression, and severe anxiety leading up to their end of life. (10, 11). Additionally, studies have shown that nearly half of the families of hospitalized patients may also experience significant distress during this stage(11). Therefore, it is crucial for nurses to possess the necessary knowledge and guidance to support families in making decisions regarding home-based palliative care. (12).

Limited research has examined the perspectives of families of palliative cancer patients in Indonesia regarding their decision-making process for home-based palliative care. Therefore, the aim of this study is to address this gap in knowledge and develop effective interventions to support families in making decisions about home-based palliative care. Conducting this study is essential to enhance our understanding and provide valuable insights for assisting families in their decision-making process.

Study design

In this qualitative study, a descriptive phenomenology design was employed. This research approach enables the exploration of the family's perspectives and insights regarding their decision-making process concerning home-based palliative care. By using this design, valuable insights can be obtained, contributing to a deeper understanding of how families make decisions in this context..

Participants

The participants in this study consisted of family members of palliative cancer patients who were previously hospitalized in a national referral hospital and had firsthand experience in making decisions about home-based care. Both families who chose to continue care at the hospital and those who opted for home-based care were included. Purposive sampling was utilized to select participants, resulting in a total of 10 individuals who agreed to participate. All of these participants declined home-based palliative cancer care for their seriously ill family members. Further details regarding participant characteristics can be found in Table 1.

Data collection

A total of 10 family members who had declined home-based palliative care were recruited for this study. The inclusion criteria required participants to be close family members (such as father, mother, husband, wife, son, or daughter) residing with and caring for a palliative cancer patient at a leading referral hospital in Jakarta. To identify potential participants, staff nurses working in the hospital wards assisted in the initial approach. The potential participants were contacted, provided with detailed information about the study, and obtained informed consent. In-depth interviews lasting approximately 60–70 minutes were conducted by the first author at the participants' chosen locations, typically their homes. The interviews were audio recorded. Data collection continued until saturation was reached after the interview with the 10th participant..

Data Analysis

The phenomenological data analysis using Colaizzi's approach was employed to investigate the experiences of families of palliative cancer patients in making decisions about home-based palliative care. Initially, a thorough reading of the interview transcripts was conducted to gain a comprehensive understanding and identify significant statements. These statements were then categorized and organized into themes. The themes were further described and integrated to provide a comprehensive depiction of the family's decision-making process for home-based palliative cancer care. To validate the findings, the participants were contacted by phone.

Measures were implemented to ensure the study's trustworthiness, including considerations of credibility, transferability, confirmability, and dependability. The data analysis was primarily conducted by the first author, with the second and third authors, experienced qualitative researchers, contributing to the rigorous process through collaboration and review.

Rigours

To enhance the robustness of this study, three criteria were employed, namely credibility, transferability, and confirmability. Credibility was achieved through rigorous processes, including peer debriefing and the thorough review by the corresponding author of the transcripts, emerging subthemes, themes, and findings. Although member-checking with the participants was not conducted, two members of the research team, who possessed expertise in oncology nursing and were less involved in the data analysis, reviewed and validated the identified themes and subthemes that accurately represented the data. Additionally, the data analysis was conducted in Bahasa, and the subsequent findings were presented in English, which may raise concerns regarding trustworthiness. To mitigate this impact, a standard forward-backwards translation process was meticulously conducted by an external translator, ensuring the faithful translation of themes, sub-themes, categories, and quotes into English. Transferability was enhanced through the inclusion of rich and detailed descriptions, providing a comprehensive understanding of the contextual factors surrounding the study. Confirmability was addressed through the authors' commitment to honest and introspective self-reflection. Furthermore, all authors underwent training in qualitative research methodology, further bolstering the confirmability of this study.

Findings

Participant Demographic Characteristics

Table 1

The characteristics of the participants
participant	Gender	Age (years old	Length of time of suffering cancer	Education	Relation to patient	Occupation	Patient’s diagnosis
P1	Female	36	1 year	University	Daughter	Housewife	Stage IV liver cancer
P2	Male	30	2 year	University	Son	Colleges Student	Stage IV skin cancer
P3	Female	42	2 year	High school	Daughter	Housewife	Stage IV breast cancer
P4	Male	54	1 year	Primary school	Husband	Cleaner	Stage IV breast cancer
P5	Female	32	2 year	University	Daughter	Employee	Stage IV lung cancer
P6	Male	46	2 year	University	Husband	Online Driver	Stage IV breast cancer
P7	Female	57	1 year	Primary school	Wife	Housewife	SOL (Space of Lesion) stage III
P8	Male	25	2 tahun	University	Son	IT Operator	Pancreatic cancer stage III
P9	Female	48	1 tahun	High school	Wife	Housewife	Bone cancer stage III
P10	Female	25	2 tahun	University	Daughter	Voluntary worker	Stage IV lung cancer

Table 1 presents the demographic characteristics of the study participants. Among the 10 patient participants, the majority were female (60%), over 40 years of age (50%), college graduates (60%), daughters of the patients (40%), and housewives (40%). Although most patients had been diagnosed with cancer two years ago, the majority of them had advanced stage IV cancer (70%).

Themes

Table 2

(Sub)themes emerging from the analyzes regarding family perceived in depending on a caring patient with palliative cancer in a hospital
No	Themes	Sub-themes	Elements
1	Lack of support in the decision-making	Lack of understanding in the palliative condition	Limited time
			Provide information earlier
		Lack of understanding in the goal of care	Forming unreadiness for the worst
			Misinterpretation of the purpose of palliative care
		Lack of knowledge of caring patient in home	Lack of skills
			Need for ongoing education and support
			Inadequate communication
		Lack of resources to support home-based care	Health facilitation
			Opioid needs for patient
2	Families rely on hospitals	Better access to necessary resources and interventions in hospital	National insurance
			Expectation of patient’s recovery
			Preference for the expertise
		Unpreparedness to provide adequate care at home	Limited awareness or access to community-based services
			Lack of confidence or ability
		Advocating for the continued hospitalization
3	Pain and chronic sorrow	Chronic pain	Fear of potential complications or emergencies
			Impact on daily life
			Long-term pain
			Difficulty in managing
		Chronic sorrow	Risks or uncertainties
			Emotional distress and sadness

The data analysis revealed the following themes:

Theme 1: Lack of support of family in the decision making

Most of the participants of this study expressed lack of support in making the decision to take care of the palliative cancer patients at home. There were four aspects that they felt lacking. The first one was the majority of the participants also revealed that they did not understand the palliative condition of the patient and goal of the care when they made the decision for home-based palliative cancer care since the doctor or nurse never informed frankly to patient and the family. Some participants even mentioned also that they had not been familiar with such information before being invited to participate in the study. This condition made those families confuse in making decision and caring of the patient at home as well. They mentioned that the doctors or the nurses had never explained to them about the palliative diagnosis and its home management, while they did expect to have enough information about it early in the hospitalization to be better prepared for the worst in their families. The family were not ready to bring the patient home for care, and the family only received some information about patient care at home immediately before the patient discharge.

The following statement illustrated from participant 2 is an example of the statement which led to the emerging category of “family did not receive information on how to care of the palliative cancer patients:

“...We expected for some information to prepare us take care of mother before she got discharged, so that we knew what to do at home, do we need follow-up visit to the hospital clinic or not. Such thing should have been provided by the nurse. They should not have just sent the patient home like that. That’s all I expected.” (P2)

Participant 2 spoke about being uninformed prior the patient discharge while the participant realised the importance of it to prepare them taking over patient care at home.

One family (referred to as participant 3) shared her personal experience of encountering the concept of palliative care for the first time in the study:

"..When I received the initial call from you, that's when I received information about it. You explained to me what palliative care entailed. That was the first time I became aware of such a service. Prior to that, it was completely unfamiliar to us, and of course I really want my mother recover as before” (P3)."

This expression represent the theme of lack of support in the decision making process of taking care of the patients at home or staying hospitalized.

Families expressed their expectations for support from physicians when deciding whether to care for the patient at home or keep them in the hospital. They anticipated home visits from physicians and a continuous supply of medications for the patient. Another important aspect was the lack of resources to support home-based care. Families desired access to appropriate facilities and resources to fulfill their responsibilities in caring for palliative cancer patients. This concern is exemplified by the following statement from participant 1.

“..."In an unexpected turn of events, my father experienced a significant complaint, and we rushed him to the hospital. However, the process of seeking medical attention took quite some time, as upon our arrival at the hospital, they had to conduct the analysis again, which was a time-consuming process. If, on the other hand, my father was already admitted to the hospital, the entire process would have been much quicker and more streamlined." (P1 )

When faced with the decision of caring for the patient at home or in the hospital, families expressed their expectations for physician support. They hoped for home visits from physicians and a consistent supply of medications for the patient. Additionally, the lack of resources to support home-based care emerged as a significant concern. Families desired access to suitable facilities and resources to effectively fulfill their responsibilities in providing care for palliative cancer patients. This sentiment is exemplified by the following statement from participant 1.

Theme 2: Families rely on hospitals

In an effort to avoid the inconvenience of patient care at home, the family relied on the hospital to take care of a member of their family who had palliative cancer. The investigation found three significant identified factors. First, the family believed that the severely ill member of their family would benefit the most from ongoing hospital care under the health care coverage system (BPJS). Five people expressed this sentiment, for instance:

“"We would be missing out on great opportunities if we didn't make use of the perks afforded by government insurance (BPJS). While our father is still fighting cancer and haven't fully healed, we strongly reject the concept of her release because his cancer treatment is heavily dependent on hospital care, moreover, we cannot do much at home ."...” (P2)

The participant expressed their opinion, emphasizing the importance of dependence on hospital-based care for effective cancer treatment. He believed that The effectiveness of his family member's cancer treatment is intimately related to the specialist care provided by hospitals. The full resources and expertise offered inside a hospital environment are vital in treating the complications of their disease. He feel that switching to home-based care will undermine the quality and efficacy of their family member's cancer treatment. Additionally, the participant addressed the financial side of their decision, noting the weight of cancer-related bills simply covered if their patient merely remains in the hospital. By employing national insurance systems like BPJS, individuals may guarantee that their loved one obtains essential care without paying exorbitant fees.

Furthermore, this study reveals that despite the numerous advantages of home-based palliative cancer care, families expressed a willingness to keep their loved ones hospitalized for care. This decision stemmed from their unpreparedness to provide adequate care at home. The families believed that unresolved issues, such as oxygen and medication infusion, required the expertise of healthcare professionals. Additionally, they held the expectation that hospital treatments would contribute to the patient's recovery. Therefore, the families perceived the decision to send the patient home as a sign that healthcare providers were no longer actively involved in the patient's path towards recovery.

Despite requests for discharge, the families strongly resisted the idea of bringing the palliative cancer patient home. They actively engaged with hospital staff or authorities, advocating for the continued hospitalization of their family member. Their consent for discharge was conditional upon the patient achieving full recovery. Participant 8 succinctly summarized their perspective, highlighting their reliance on hospital services.

"We strongly believe that it is in the best interest of our mother to remain in the hospital until all her treatment is completed. Following her request to go home is not feasible for us as we are unable to provide the necessary care she requires. Therefore, we have made the decision to keep our mother in the hospital, ensuring that she receives the best possible treatment and has the opportunity to fully recover." (P8)”

Participant 8 expressed the belief that the patient's ongoing treatment necessitated hospitalization. Additionally, they refused the patient's desire to be brought home, citing concerns about the lack of available caregivers. This excerpt exemplifies the theme of families relying on the hospital for the care of palliative cancer patients.

Theme 3: pain and chronic sorrow

The participant describe that the participants detected pain and chronic sorrow on their family members diagnosed palliative care. Three pivotal aspects that were identified. The families's view were primarily that their seriously ill family members were in terrible pain they could not bear. This is represented in one of the participant's expressions below.

"my mother's pain was unbearable, as if she had been stabbed. It was a constant, agonizing sensation, almost like being tightly squeezed. The intensity was so severe that it often prevented her from getting a good night's sleep. In such situations, I often kindly offered massages to alleviate the unbearable pain she experienced (P1).

Several other interviewees highlighted the presence of psychological issues experienced by patients, with sadness emerging as the predominant emotion. Specifically, four participants, P1, P5, P7, P9, and P10, expressed sadness upon receiving their cancer diagnosis. The following excerpts from their statements shed light on their experiences of sadness during this challenging period:

"Yeah, right now, my mother has this overwhelming feeling of helplessness....... It is like she has lost the ability to engage in various activities. She can no longer participate in recitations, and even she can not participate in activities in the community either... yeah... her world seems confined to the boundaries of the hospital" (P10)

This excerpt demonstrates the participants' shared perspective on how the experience of cancer illness led to the manifestation of both physical pain and long-lasting sorrow for the patients. As a consequence of this unwelcome condition, individuals found themselves restricted in their participation in various social and spiritual activities. Notably, this particular issue emerged as the primary motivation for families to opt for hospital care and ensure the well-being of their severely ill family members.

According to previous research(13, 14) the readiness and ability of the family play a crucial role in their decision-making process for home-based palliative care. It is important for healthcare providers to assess whether the family caregivers are prepared and capable of providing care at home. Not all palliative cancer patients can be effectively treated at home, as indicated by a study(15) in other countries such as the United Kingdom and Australia. Reasons for choosing hospitalization include difficulties in managing pain and symptoms at home, lack of 24-hour care, and worsening patient conditions. Family preferences, limited access to palliative care services, and the family's inability to provide adequate home-based palliative care are also influential factors in the decision-making process.

In Indonesia, the accessibility of palliative care services poses a significant challenge (16, 17). With a population of over 265 million, half of whom reside in rural areas, ensuring accessible care remains a prominent issue (3). Palliative care services are primarily concentrated in urban areas, and despite being introduced as a national program in 1989, access to palliative care in Indonesia is still inadequate(16). Currently, only ten government-assigned hospitals provide palliative care, located in seven cities across three main islands, despite Indonesia's vast archipelago comprising over 17,000 islands (17, 18). This lack of accessibility was also acknowledged by the participants in this study, with nine out of ten expressing their need for accessible palliative cancer care.

This study highlights that due to the family's lack of capability and proficiency in providing care for their palliative cancer patients, they chose to keep them in the hospital. Several participants expressed concerns that home-based treatment would not facilitate the patient's recovery and address the physical symptoms and treatment side effects associated with cancer. The family felt unequipped to manage these issues at home. It is important to note that caregivers who were unable to deliver palliative care at home experienced significant stress levels, which negatively impacted their well-being. (19).

In this study, a significant number of participants (six out of ten) expressed their inability to provide care for palliative cancer patients at home. They strongly believed that patients with cancer should receive comprehensive care and treatment exclusively at larger hospitals. These findings align with the study (16)conducted which also identified that palliative cancer patients in Indonesia faced various physical challenges and unmet needs. These difficulties may stem from the lack of adequate facilities, competent healthcare professionals, and limited access to palliative care services, particularly in the context of home-based care.

The Indonesian government introduced the universal health coverage system in 2014, which consolidated various aspects of previous government-funded health insurance programs. Managed by the Healthcare and Social Security Agency (BPJS))(1, 20). this system has been mentioned by five participants in the study as a reason for keeping palliative cancer patients in hospitals. These patients have already paid for their insurance and believe they are entitled to receive healthcare services at the hospital. The families rely on the hospital due to the comprehensive healthcare services provided to cancer patients through the BPJS insurance. However, it is important to note that this practice may strain the efficiency of the healthcare coverage system. For example, the Medicaid system in the United States has demonstrated cost savings of up to $6,900 and $252 million per year by prioritizing home-based palliative care over hospital-based treatment. Hospital-based care incurs significantly higher operational costs compared to home-based care. In Medicaid, patients are also financially supported when receiving care at home.(6).

In terms of decision-making processes, cultural differences can serve as influential factors. The majority of participants in this study entrusted decision-making authority to their extended family members. This choice was rooted in the participants' belief that the extended family possessed the knowledge and capability to make the most appropriate decisions on their behalf. Furthermore, it had become a customary practice for participants to rely on their extended family members for decision-making responsibilities. These findings align with the research conducted by a the prior study (16), which explored the role of the family as caregivers for patients. The study revealed that families acting as caregivers in hospitals were actively involved in addressing patients' symptoms and issues throughout hospitalization, including participating in decision-making processes. Such involvement can be attributed to the cultural norms prevalent in Indonesia, where strong familial bonds and a penchant for open communication are valued. This cultural context extends to the participation of families in patient care, particularly within hospital settings. This observation is further supported by the findings of a study (21) whose research emphasized the prevalent nature of strong family ties and extensive family involvement in patient care and hospitalization processes in Indonesia. In order to comprehend the dynamics of patient care decision-making and the responsibilities performed by family members within the healthcare system, it is important to consider the implications of these cultural dynamics.

The influence of family as decision-makers is not limited to the Javanese ethnic community but also extends to the Sundanese ethnic community in West Java, where strong family ties are deeply valued. In fact, most ethnic groups in Indonesia adhere to a patriarchal decision-making pattern, with the exception of the Minang tribe, which follows a matrilineal pattern. Individual worth is highly reliant on societal assessment, consequently shaping decision-making processes related to family care and other aspects of life(22). Similarly, the ethnic Lampung community reflects cultural diversity, comprising various ethnic groups, each upholding distinct cultural values that inform perceptions, attitudes, and behaviours in daily life, both individually and collectively. Notably, Lampung women exhibit profound respect towards men, often refraining from contradicting their husbands' words and diligently attending to childcare and household chores. Fear of being perceived as disobedient if they deviate from their husbands' instructions is deeply ingrained within these women. In the public sphere, decision-making is predominantly dominated by men, and women seldom participate in public affairs. This observation is a consequence of the interplay between the kinship system and the prevalence of patriarchal ideology within Lampung society(18).

However, this study uncovers certain factors that can disrupt the decision-making process in palliative care. One significant finding is that families expect timely information and education regarding the patient's condition and the possibility of home-based care. Surprisingly, the participants admitted that they were not prepared to take on the responsibility of patient care when deciding to bring the patient home.. This lack of readiness led to negative emotions such as fear and shock, prompting some families to resist patient discharge. In one instance, a participant had a heated argument with the head nurse, refusing to take the patient home. Another study (5)indicates that the main causes of family unreadiness for home-based care include difficulties in hospital readmission for patients in deteriorating conditions, exhaustion from providing daily care at home, and concerns about the well-being of other family members, particularly children, as the majority of energy is directed towards the severely ill patient. Additionally, caregiver burden within the family is identified as a major reason why families are reluctant to provide care at hom (23).

The participants in this study felt that their ill family member suddenly got discharged. They were overwhelmed not only by the immediate discharge but also the load of information, with the puzzling medical jargons, shortly prior of the discharge. The family need some time and preparation before deciding on the home-based palliative cancer care. A major preparation for example is preparing the special bed for the patient to allow mobilisation. Our study finding is consistent with the result of the study(9) found that the health care providers often give no sufficient information about the palliative condition of the cancer patient, the aim of palliative care, and the early discharge planning. Meanwhile, education/information is the key for developing good coping mechanism in decision making process of the family regarding the home-based palliative cancer care, as argued by the research(24, 25). The family need the informational support about performing daily care for palliative cancer patients at home, involvement in treatment plan and end-of-life care. In addition, family need a home care or home visit by the health care providers to support the patient care.

According to a study (26), when families are unprepared to serve as caregivers, they may experience fear and a sense of incompetence in providing palliative care for cancer patients at home. Additionally, another study (27) suggests that family's lack of readiness can lead to negative emotions and attitudes towards home-based palliative care, resulting in resistance to bringing the patient home. Families who are unprepared and still choose home treatment are at a higher risk of experiencing traumatic situations during the care process. Some families may make uninformed decisions about home-based palliative care without fully understanding the implications involved..

However, the findings of this study shed light on the fact that several families exhibited reluctance to have their severely ill family members discharged from the hospital. This resistance stemmed from their significant reliance on the hospital, as they perceived it to possess the capability to cure their loved ones' illnesses. This aligns with the research(23), which elucidated that the primary reason for patients and families heavily depending on hospital care, even in cases where palliative care had been recommended for terminal patients, was the family's inability to cope with the patient's complaints and distress at home due to the debilitating nature of their condition. Consequently, when health insurance coverage is available to facilitate the ongoing treatment of sick family members in the hospital until recovery, families or caregivers tend to develop a dependency on these health insurance facilities (BPJS), which only cover caring patients in the hospital, not in patients' houses.

The findings of this study emphasize the importance of providing early education and discharge planning to the families of palliative cancer patients, as stated by six out of ten participants. Early education plays a crucial role in decision-making and preparation for home-based patient care. One participant mentioned that education and discharge planning should ideally occur at least two weeks prior to discharge. Insufficient time for preparation and lack of resources at home were identified as major concerns influencing the family's decision to opt for home-based palliative cancer care. It is essential to provide early education and discharge planning to both patients and their families. Involving patients in decision-making and treatment planning has positive effects on their well-being, aligning with the concept of a peaceful end of life where dignity and respect are attained through active involvement of patients and families in decision-making processes. (10, 11, 28).

In developed countries, the challenge of limited access to palliative care at home for families is effectively addressed through the establishment of Specialist Palliative Care (SPC) services, which is strongly supported by the World Health Organization. SPC consists of a multidisciplinary team of healthcare providers, including physicians, experienced nurses, psychologists, and social workers, who work both within hospitals as a consulting team and in the community to deliver home care, nursing home support, and hospice services (29). The implementation of SPC in the United States over the past decade has led to a significant increase in the demand for palliative care, with a fivefold rise from 15–75%. As a result, families are more inclined to choose home-based palliative care instead of prolonged hospitalization, and SPC plays a pivotal role in facilitating such decision-making processes. The primary focus of SPC is to enhance the quality of life for patients, with a particular emphasis on alleviating pain in individuals with life-threatening cancer.(30, 31).

SPC starts working early since a patient is admitted in the hospital. Cancer patient with palliative condition will be referred to the SPC. SPC will carry out some discussions with the family about the palliative treatment plan. Following on the patient’s readiness and autonomy, the palliative cancer patient care will be moved from the hospital to the community, as chosen by the patients. SPC has shown the impacts on improving the patient quality of life, reducing the stress of the patient and family, lowering the aggressive medical treatment and hence the hospital costs, and even on increasing patient life expectancy(32)

The United Kingdom (UK) serves as a successful example of the well-developed Specialist Palliative Care (SPC) system that has significantly improved access to high-quality palliative care services. By 2005, the UK had established 361 hospitals offering SPC, along with 277 community palliative care nurses. Additionally, they implemented 263 hospice day care units and provided 24-hour hospice home care for cancer patients. The UK's National Health Service (NHS) plays a crucial role in policy-making, coordination, and the provision of opioids for palliative cancer patients. Furthermore, the NHS subsidizes 32% of the operational costs for palliative care provided by private healthcare providers. (33).

The Indonesian government has the opportunity to learn from and adopt the integrated palliative care service model implemented in developed countries. By implementing integrated palliative care, the identified issues highlighted in this study can be effectively addressed. It is crucial to ensure access to opioid medications for palliative cancer patients. Within the integrated palliative care system, nurses play a vital role as coordinators of services such as home care, nursing home, and hospice, involving a multidisciplinary team of healthcare providers including physicians, pharmacists, mental health workers, and therapists. One important aspect that nurses must assess is the family's capacity and preparedness to provide daily palliative care at home. (25).

The role of nurses in providing home care services is crucial, although it is important to note that home care or home visits are not currently covered by the national health care insurance (BPJS). The global trend indicates a shift towards focusing on home-based services for chronic care instead of hospital-based care. The structure of home care services varies across different countries. For instance, in the UK, Sweden, Germany, the Netherlands, and Australia, home care is primarily managed by the government through long-term insurance or social insurance programs. Introducing nursing home care services within the BPJS system in Indonesia could greatly benefit palliative cancer patients and their families. (24).

This finding aligns with the research (16), which delved into the experiences of breast cancer patients at Panembahan Senopati Hospital in Bantul, Yogyakarta. The study revealed that the initial psychological burden experienced upon receiving a cancer diagnosis was predominantly characterized by feelings of sadness. Patients responded to this burden by expressing their sadness through tears, with some individuals even experiencing prolonged periods of crying as they struggled to adapt to their illness. The psychological burden, in turn, influenced various aspects of patients' social lives. The participants' expressions regarding the second theme are consistent with the observations (34), who emphasized that rapid changes occur in patients with chronic diseases, including cancer, which subsequently impact their social dynamics.

Limitations

This study had some limitations. First, the participants were recruited from only three cancer Hospistal in Jakarta, Indonesia. Rigorous research was conducted in this study and detailed information about the process was provided, but it is questionable about the level of likelihood that the findings of this study could be generalized in the Indonesia context. Furthermore, no intern mentors were recruited, which may have provided a different perspective on this topic. Therefore, future research should expand the pool of participants to provide more robust evidence on this matter. Finally, it was noted that the interviewers were co-workers with a few participants during the data collection period, which might have caused some communication and interpretation issues in the results

The experience of family decision making of home-based palliative cancer care can be described in three themes: ((1) lack of support in the decision-, (2) Families rely on hospitals and (3) pain and chronic sorrow. The decision-making process regarding palliative care is a significant and meaningful experience for the family members involved, particularly when caring for patients with palliative cancer towards the end of life. To enable successful decision-making and provision of care at home, families require support from healthcare professionals and government policymakers. It is crucial to provide early education and information to empower families to make informed decisions and adequately prepare for home-based palliative care. Additionally, the Indonesian national health insurance system should offer comprehensive support for home-based palliative cancer care, aiming to enhance care efficiency for patients in need..

Acknowledgements

The researchers thank all participants and the nurses in our study setting for their invaluable contribution to this study. Moreover, the researchers also gratefully acknowledge Universitas Andalas for supporting this study.

Author contributions

All authors contributed to the study's conception and design. Material preparation, data collection and analysis were performed by Boby Febri Krisdianto. The first draft of the manuscript was written by Boby Febri Krisdianto and Debie Dahlia and Agung Waluyo commented on previous versions of the manuscript. Debie Dahlia also had a responsibility to obtain funding. All authors read and approved the final manuscript.

Data availability

Enquiries about data availability should be directed to the authors.

Funding

This research was funded by by Directorate of Research and Community Engagement (No.2017)

Acknowledgements

The reseachers thank all participants and the nurses at our study setting for their invaluable contribution in this study. Moreover, the researchers also show their gratitude to Universitas Andalas supporting to publish this study.

Conflict of interest authors declare that they have no competing interests associated with this study.

Ethical approval The ethical clearance of this study was issued by the Ethical Committee Faculty of Nursing Universitas Indonesia (No: 99/UN2.F12.D/HKP.02.04/2017). All participants voluntarily participated in the study and signed an informed consent.We kept the confidentiality of the participants in the research process, including anonymisation.

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No competing interests reported.

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Embracing Family Presence: Exploring the Reason of Family Decision Making Dependence on in-hospital Palliative Care for Cancer Patients

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Abstract

Introduction

Methods

Study design

Participants

Data collection

Data Analysis

Rigours

Findings

Participant Demographic Characteristics

Themes

Theme 1: Lack of support of family in the decision making

Theme 2: Families rely on hospitals

Theme 3: pain and chronic sorrow

Discussion

Limitations

Conclusions

Declarations

References

Additional Declarations

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