Original Article

Multi Components in the Implementation of Advanced Care Planning for Patients with Cancer: A Scoping Review

Introduction

Advance care planning (ACP) is defined as a formal decision-making process aimed at helping patients make informed decisions about their future care.¹ ACP incorporates sharing values and preferences for medical care between the patient and health care professionals (HCPs), also often supplemented with input from and involvement of family or informal carers.² In recent decades, patient autonomy has become increasingly essential in ACP. Many patients desire to engage in making decisions and extend their autonomy to future care decisions that take effect when they lose capacity or become incapacitated.³ Over time, a more patient-centred approach evolved in medicine, leading to an enhanced involvement of patients in clinical decision-making.⁴

ACP plays a significant role in addressing palliative care needs and recognizing the end-of-life stage in a timely way,⁵ particularly for meeting patients’ end-of-life wishes, as an element of comprehensive care including cancer care.⁶ ACP includes items such as preferred place of care and death, resuscitation policy, treatment limitations and euthanasia directives.⁵ Furthermore, ACP facilitates patients’ preferences for future treatments, including care intensification and invasive interventions. Considering their beliefs, goals, and perceived quality of life, ACP helps HCPs balance medical decisions with patient-centered care,⁷ and help prevent family members from the difficult situation of having to guess what kind of care their loved ones would choose.⁸

In caring for patients with cancer, the ACP has been associated with reduced use of life-sustaining treatments and cancer-directed therapy; fewer hospitalizations and healthcare costs; greater use of hospice services in the last weeks of life; and can lead to more patient-centred care.⁹ Although the ACP being an important in palliative care for those with cancer, the communication around it can be challenging.¹⁰ Further, it was reported that the patient’s and family’s desire and readiness to hear and accept information about prognosis, meanwhile readiness to discuss such things is variable, and was suggested to be reliant upon the values and characteristics of the individual person and family.¹¹ Additionally, including information on patients’ values, beliefs and more general wishes in the advance directives (ADs) as a part of ACP process may be helpful. When the patients are not able to communicate, their families could provide detail information about the patients preferences and make decisions on behalf of the patients.¹²Thus, it could be challenging for HCPs in providing ACP in regard to various patients and families concerns such as knowledge, attitudes, value and beliefs, culture and ethnic.¹³ So that the implementation of ACP could differ in each different country all over the world, especially the country which consist multi-ethnics and cultures.¹⁴

The growing interest in ACP has resulted in a variety of ACP interventions and programmes,² and usually used in the context of progressive illness and anticipated deterioration.¹ Otherwise, a large variation also still exists in the extent to which ACP documentation takes place,⁵ and affects the ACP and ADs often are not completed, including those in minorities and with lower education and literacy skills.¹⁵ Thus, the HCPs should document care plans and all patient’s wishes in a written advance directive form, and share them with patients, family and team members.^15,16

As such of ACP implementation, AD_S has been reported that it’s associated with a reduction in aggressive treatments, fewer in-hospital deaths, increased use of hospices, and lower hospital charges. Absence of ADs may lead to unwanted aggressive treatments, which correlates to poor quality of life.⁸

Despite growing global interest, the implementation of ACP varies significantly across regions and cultural contexts.¹⁷ Therefore, this scoping review aims to identify and explore components of ACP, including knowledge, attitudes, values and beliefs, cultural and ethnic factors in patients with cancer and their families. The guiding question is “What are the components of ACP in palliative care intervention among patients with cancer or neoplasms and their families?” This review also aims to provide culturally informed guidance for implementing ACP globally.

Material and Methods

This scoping review was conducted in accordance with the updated PRISMA-ScR 2020 checklist.¹⁸

Search Strategy

A comprehensive search was performed in PubMed, Scopus and ScienceDirect databases up to December 2023. Key search terms included “advanced care planning” OR “advance statement” OR “advanced directive planning” OR “end-of-life care planning” AND “cancer” OR “neoplasm” OR “oncology” AND “patient” OR “family”.

English-language articles reporting on the implementation of a multicomponent of advance care planning in palliative care intervention targeting individuals aged 18 years and older with cancer or their family were eligible for this review. Quantitative and qualitative or mixed-method studies that have clear findings from patients or family caregivers were included. We selected studies that discussed aspects of the multicomponent in ACP. We defined a priori a multicomponent aspect that included one or more of the following domains: (1) knowledge, (2) values, (3) attitude and belief (4) culture or ethnicity. Review or protocol were excluded.

Study Selection and Data Abstraction

All abstracts from the initial search were reviewed by 2 reviewers (ER, SA) for possible inclusion in the study. Any uncertainty regarding whether an abstract should be included was brought to the entire group and resolved by discussion. All reviewers (CE, YY, ER, SA) judge the included full-text articles if they meet the study’s eligibility criteria. The reference lists of all retained articles were also reviewed to identify additional potentially eligible articles. For the final set of articles reviewed, data were abstracted independently by two reviewers and then discussed by all reviewers. Disagreements were resolved through discussion. Data from articles that detailed the same intervention were incorporated into 1 unit of analysis rather than separating them.

Study quality was assessed independently by all reviewers using the Joanna Briggs Critical Appraisal Tool for cross-sectional and cohort studies and Mixed Methods Appraisal Tool (MMAT) for mixed-method studies. Any discrepancies were resolved by discussion. The tool assesses the overall study quality in 5 areas: Reporting, external validity, internal validity—control of bias, internal validity— confounding, and power. Studies were extracted based on the following categories: Author and year of publication, study location and setting, study design, population demographic data, and ACP components being discussed.

Results

Data Synthesis and Analysis

The current systematic review included qualitative, quantitative and mixed-method studies, therefore a narrative synthesis was conducted. We conducted thematic analysis to categorise knowledge, attitudes, values and beliefs, cultural and ethnic of the patients with cancer and their families into domains from included studies.

Study Selection

Figure 1 shows the PRISMA flowchart diagram. We identified 12,591 studies for title and abstract screening. After removing 699 duplicates, 11,888 records remained. A total of 11,842 records were excluded because they did not meet the inclusion criteria. Forty-six articles were screened by reading the full-text articles.

Four articles were excluded due to irrelevant populations (e.g., studies including children or a mixed cancer and non-cancer population). In the end, 42 studies were included in the review.

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Figure 1.

PRISMA flow chart for study selection

Figure 1.

PRISMA flow chart for study selection

Characteristics of Included Study

Table 1 shows the characteristics of included studies. The studies included were quantitative (n = 12), qualitative (n = 15) and mixed methods (n = 15). The quality of included studies was high (n = 41) and medium (n = 1). All studies were conducted in high-income countries including the United States of America (n = 14), Canada (n = 2), the United Kingdom (n = 1), Europe (n = 6), China (n = 6), Taiwan (n = 3), South Korea (n = 1), Australia (n = 3), multiple countries (n = 3), Indonesia (n = 1) and Singapore (n = 1). Most studies were conducted in hospital settings and involving patients with cancer. A total of 19,573 patients with life-limiting illness and 4,670 family caregivers were involved in the included studies. All included 42 studies reported perspectives from patients and family caregivers, of which 28 studies reported on knowledge and perceptions; 33 studies on attitudes and behaviours, 26 studies on values and beliefs, and 13 studies on culture and ethnics.

Table 2 Shows synthesis of multiple components of ACP from included study. We group the components into: (1) knowledge and perception; (2) attitude and behaviour; (3) values and belief and (4) cultural aspects and ethnic.

Patients and Family Caregivers’ Knowledge and Perception on ACP

Twenty-eight studies reported patients’ and family caregivers’ knowledge and perceptions on ACP. We synthesised findings into three subcomponents: (1) lack of knowledge and information on ACP; (2) varied perceptions of ACP; and (3) education on ACP and its impacts. The majority of included studies found the knowledge and information of ACP was still considered low both among patients and family members, and which caused reluctance in initiating ACP discussion.^37,30 In addition, the lack of knowledge is considered the strongest barrier in initiating ACP discussion,²² although there is an openness and willingness to engage in such discussions.

Findings of a cross-sectional study in the US show that there is an effort to improve knowledge on ACP by providing education via videos, pamphlets.⁵⁰ In addition, a study from South Korea utilised public promotion and education to facilitate ACP.¹⁹ Such efforts have positive impacts, e.g. the change of treatment preference particularly in life-prolonging treatment measures.²⁰ In addition, the provision of ACP resources patients’ discussions on ACP with the physician. Two studies revealed that patients and caregivers prefer to have ACP discussions after being diagnosed.³⁵ However, another study identified that caregivers prefer to have ACP discussions when there is no more treatment or disease recurrence. Participants in the included studies reported that following ACP discussion they prefer comfort care and sought to avoid aggressive treatments.

Patients and Family Caregivers’ Attitudes and Behaviour on ACP

Thirty-three studies discussed patients and family caregivers attitude and behaviour. There are three subcomponents: (1) Openness and acceptance to ACP; (2) factors influencing the decision to engage in ACP discussions; and (3) delayed decisions.⁵⁵ Abu al Hamayel et al’s study discovered that generally, patients contemplate the importance of considering their end-of-life wishes.³⁹ Moreover, several studies found that the majority of patients can make their own decision regarding end-of-life, although in other studies some patients are influenced by family caregivers in the decision-making. For example, family caregivers from China tend to dominant role in the process of decision-making.

Several factors influence patients and family caregivers in having ACP including the timing of these sensitive discussions, their feelings, and emotions. One study found that more than two-thirds patients think the optimal time to have ACP discussions is after being diagnosed with life-limiting illness.⁵⁶ Earlier ACP discussion leads to lower rates of aggressive care.³¹ Three studies discussed the delayed decisions made by patients and family caregivers^5,31,43 and summarized that conflicting opinions were one of the main contributing factors.

Patients and Family Caregivers’ Values and Belief on ACP

Twenty-six studies discussed values and beliefs related to ACP. We divided into two components: Spirituality (religious influence) and the power of belief. Three studies discussed the role of spirituality and religious influence on ACP discussion.^12,28,45 ADs were found slightly more common among patients with moderate spirituality than among those with low spirituality.⁴⁵ The power of belief was discussed in many included studies. Three studies from the USA found that faith or belief helped patients remain strong, feel supported, and enabled them to openly discuss treatment options with their physicians, including whether to accept or reject care.^9,28,49

Patients and Family Caregivers’ Culture and Ethnic on ACP

Thirteen studies reported that patients’ and family caregivers’ cultural and ethnic backgrounds influenced their perspectives on ACP. For example, a study found that modern Chinese people who live in cities and have received Western education tended to participate more in the AD discussion, while patients living in villages tended to follow the traditional Chinese culture and preferred to die in their family temples.²³ One study in Singapore showed that among elderly patients and caregivers ACP had limited value because the relatives were often the key decision-makers.⁴⁸

Discussion

This study provides a comprehensive review of the research evidence on multiple components of ACP particularly among patients with cancer. To the best of our knowledge, it is the first review to offer a multicomponent perspective on ACP among patients with cancer and their families as caregivers. The study classified these components into key domains: knowledge, attitudes and behavior, values and beliefs, and cultural and ethnic perspectives of patients with cancer.

The evidence shows that lack of awareness and understanding of ACP is one of the main barriers among patients. This is consistent with a review by Crooks et al⁵⁷ which found that lack of knowledge is a principal barrier to ACP in minorityy ethnic groups. Furthermore, another study found that a lack of ACP knowledge was a key factor influencing outpatients’ unwillingness to engage in ACP.³⁰ These findings are also in line with one study reporting that both lack of knowledge and procrastination were the strongest barriers to completing ADs.²² Similarly, patients who have less knowledge due to lower educational level tended to refuse treatment and against healthcare professionals’ recommendations.²³ These patients often did not feel ready to discuss ACP, as their limited understanding of their disease led to increased worry and hesitation.²⁸ Even though more than half of the participants expressed a desire to make decisions about their end-of-life (EOL) care and considered hospice care important. However, only a tenth of them were familiar with ACP and AD.²¹ When information was cognitively processed and accepted by patients, it was associated with higher completion rates of Do Not Resuscitate (DNR) orders and played a fundamental role in end-of-life decision-making and care.²⁴ Undoubtedly, there are many patients and families had never heard of or considered ACP and AD prior to being admitted to hospital or palliative care unit facilities, resulting in a lack accurate knowledge about ACP.²⁶ Additionally, many patients hold misperceptions about medical interventions and care at the end of life.²²

Attitude among patients and families toward completing ACPvaried widely and were affected by their concerns, knowledge, values, and beliefs. There is evidence indicating that the most respondents considered ACP to be important or very important, of which 60% showed a high willingness to participate in ACP.³⁰ Another study reported that patients’ expression regarding ACP predominantly included positive feelings (for example, relief, happiness), while the rest were negative feelings (for example, sadness, loneliness, fear, loss of control, frustration, concern, anger). In the United States and Germany, more than 80% of the patients mentioned negative feelings. In Japan, 17% of patients said they felt no emotions facing their future decision (different from the United States). Only 45% of Japanese patients had negative emotions toward their future decision, this percentage being lower than in the United States or Germany.²⁹

African Americans generally held positive attitudes toward AD, although many did not trust formal documents. Some believed that completing an AD might compromise their care; however, they agreed that having a ‘living will’ would help maintain control over their end-of-life care. African Americans wanted more life sustaining treatment and less likely to complete a living will.³² Additional motivations for completing ADs included: Enhancing autonomy, improving communication with caregivers and surrogates, fear of overtreatment, avoiding burdening others, and ensuring that personal preferences would be respected, a desire to pursue all available measures to prolong life, maintain cognitive function even if accompanied by pain, avoid dying alone, and designate proxies to be present during the dying process.³³

Values and beliefs were found to frequently impact the acceptability of ACP. For some participants, the end of life was pre-ordained by God, planning for the end of life was perceived to undermine God’s authority, or to be unnecessary as their end of life had already been planned by a higher being. Consequently, some faith-centred ethnic groups are choosing not to engage with ACP. Although religion was not specifically measured in this study, previous research often considers ethnicity and religion to be closely intertwined.⁵⁷ Although religion and spirituality were not significantly associated with the presence of a DNR order, ACP and AD were slightly more accepted among patients with moderate levels of spirituality.⁴⁵ A study reported that religion has direct consequences for patients’ medical decisions. This subset of patients felt that ACP was the most powerful way to prevent others from infringing upon their values.⁴⁶

Further, personal values helped shape patients’ preferences. Patients expressed not wanting extreme measures or interventions if they were not getting better but still wanted to be kept comfortable. Patients emphasized quality of life as a key reason for avoiding extreme life-prolonging interventions. Patients also valued being at home and surrounded by loved ones rather than being in a hospital or a nursing home.³⁹ Many participants perceived ACP as having limited value, as decisions were often made by relatives rather than the patients themselves. This was especially so for elderly patients as well as patients and caregivers.^49,48

The role of a patient’s family was found to vary within and across ethnicities: some individuals preferred to make decisions alone and avoid burden to their family, while others placed importance on collaborative familial decision-making. The position of individuals and their families regarding familial or self-expression of end-of-life preferences may impact the perceived relevance and importance of ACP, in turn impacting engagement with ACP conversations and documentation.

Chinese family members often protected the patients from hearing their end-of-life message. Patients with a multigenerational family position presented an increased tendency to be involved in their AD discussion. When AD discussions occurred, patients in rural areas tended to adhere to traditional Chinese values and preferred to pass away in family temples. Thus, they more actively accepted the concept of ADs and spent the last days of their lives at home.²³ Confucianism has deeply influenced the Chinese culture, and thus, consideration of the family is a significant ethical consideration in medical decision making.³⁰ In contrast, in Western culture such as in Belgium, family members took different positions in the end-of-life care planning for the older patient with a limited prognosis. Family members in this position did not want to be responsible for decision-making but strongly felt the expectation of the patient for them to make decisions. This responsibility caused them to feel burdened, and consequently they experienced considerable tension. All family members in this position were non-spousal relatives, predominantly daughters.²⁶

Mexican women acknowledged the precarious nature of their cancer diagnosis and informally discussed after death plans with family members, trusting that their desires would be fulfilled.²⁷ The relationship between preferences against life-prolonging care and increased likelihood of advance care planning is consistent across racial/ethnic groups.²⁰

It is the first scoping review to investigate and map the components of ACP provision for patients with cancer, enabling it to inform ACP policy-making in various countries, particularly those with multicultural and multi-faith populations. No specific findings were identified regarding ACP within particular religious groups. Therefore, it cannot be concluded that ACP is related to religion, although it is related to values and beliefs. Thus, ACP should be viewed from a spiritual perspective.

Conclusion

Studies on ACP involving patients with cancer and their families were systematically searched and reviewed. The multiple components of the ACP were classified into four main domains: knowledge and perception, attitudes and behaviours, values and beliefs, and cultural and ethnic perspectives. Although the ACP has been widely accepted globally, several essential aspects require consideration, including values and beliefs, as well as cultural and ethnic factors.

Recommendation

This review informs us that applying ACP among patients with cancer and their families may require a slight adjustment to ensure it is delivered in a culturally respectful manner. Furthermore, this review also provides insightful findings and serves as a scientific resource for improving ACP guidelines within healthcare facilities. Various aspects are considered to support the implementation of ACP, including effective communication, addressing trust issues, and promoting awareness of patient preferences. Further research can focus on the implementation of ACP in multi-religious or multi-faith background settings.

Competing Interests

The authors declare that they have no conflict of interest.

Data Availability Statement

All data generated or analysed during this study are included in this article. The datasets are available from the corresponding author on reasonable request.

Ethical Approval

Not applicable.

Research Highlights

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