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Abstract
Objective The aim of this study was to examine the knowledge, attitudes and perceptions of advance care planning (ACP) in caregivers of patients with advanced illness in Singapore.
Methods Family caregivers of patients within the palliative care unit in a hospital and a hospice were purposively recruited and interviewed. Qualitative content analysis was carried out exploring key themes and subthemes emerging from the data.
Results Between May 2009 and May 2010, 18 participants were interviewed. All participants interviewed had low awareness of ACP and the Advance Medical Directive but felt that ACP is important. Perceived benefits of ACP were that it respects autonomy, guides patients and families, and reduces burden of decision-making near the end-of-life. Barriers to ACP include non-disclosure of diagnosis as well as uncertainty of when and how ACP should be broached. There was a reticence to talk openly about issues surrounding end-of-life care as a result of cultural taboo and a fear that doing so will destroy hope. While all participants would consider ACP for themselves, some were ambivalent about discussing ACP for their loved ones, especially when their loved ones were of an older generation. Involvement of the family unit and physicians in ACP were viewed as important.
Conclusion This study highlights the need for public education on the benefits and process of ACP in Singapore. In formulating an approach to ACP, there is a need to take into account cultural sensitivities towards ACP discussions and the importance of closely involving the family unit in the process.
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Introduction
Advance care planning (ACP) is an important dimension of end-of-life care. Research has shown that ACP can enhance patient and family satisfaction as well as reduce stress, anxiety and depression in surviving family members.1
The use of inappropriately aggressive treatment in the terminally ill as well as the late implementation of the palliative care approach is frequently observed in the acute hospital setting.2 ,3 A retrospective cross-sectional study conducted in a hospital in Singapore showed that most patients with advanced illness fail to express preferences with regard to life-sustaining treatment near the end-of-life.4 A similar pattern was observed in studies performed elsewhere.5
The current legal framework for ACP in Singapore is represented by the Advance Medical Directive (AMD) Act. The AMD is a legal document that one can sign in advance to inform the doctor, in the event one becomes terminally ill and unconscious, that one does not want any extraordinary life-sustaining treatment to be used to prolong one's life.6
Despite its existence since 1996, awareness and use of the AMD are low.7
In Singapore, the recognition of the need for a broader approach to ACP beyond the AMD gained momentum. Currently, efforts at starting pilots and programmes in ACP are underway in various hospitals in the country. Cultural and ethnic factors may influence receptivity and attitudes towards ACP. Compared to the West, there are relatively few published studies in the Asian context examining attitudes and perceptions towards ACP. The aim of this study was to examine the knowledge, attitudes and perceptions of caregivers of patients with advanced illness in Singapore towards ACP.
Method
Study design
This is an exploratory descriptive study involving qualitative interviews with family caregivers of inpatients with advanced illness within the inpatient palliative care unit in Tan Tock Seng Hospital and Dover Park Hospice in Singapore.
Participants and data collection
The research team of five members recruited and interviewed participants between May 2009 and May 2010. Family caregivers were eligible if they were at least 21 years of age and spoke either English or Mandarin. Informed consent was obtained from each participant.
A semistructured interview was conducted face-to-face with each participant in a private setting, and was audio-taped for transcription and analysis. The interview questions explored awareness, perceptions and attitudes toward the AMD and the ACP. Participants were asked if they would consider ACP for themselves and their loved ones, priorities and values guiding ACP, barriers to ACP and thoughts on the general implementation of ACP. Each interviewer endeavoured to be open-ended in questioning and flexible in approach, allowing the participant to speak freely on themes relevant to the research topic. Each interview lasted between 25 to 45 min.
Participants were family caregivers of patients with advanced illness and were purposively selected on the basis of their willingness to discuss the issues.
Data analysis
The interviews were transcribed verbatim, and the transcripts were coded independently by all members of the team using conventional content analysis.8 In this process, codes were not predefined and data was read repeatedly to achieve immersion and a sense of the whole. Notes were made of first impressions that subsequently became label for codes emerging from the text. Codes were then sorted into categories based on relationships between the codes. The research team members discussed and concurred on the final categorisation of key themes and subthemes.
Results
A total of 18 participants were recruited, 15 from the inpatient palliative care unit of Tan Tock Seng Hospital and three from Dover Park Hospice. Table 1 shows the demographic characteristics of the participants.
Demographics of participants
Four major themes were identified:
Awareness and perception of importance of ACP
All 18 participants interviewed had low awareness of ACP. Three participants were aware of the AMD in Singapore and only one participant signed an AMD. However, the three participants did not understand ACP as a facilitated discussion of values and wishes regarding future care with loved ones and caregivers. All participants felt that ACP was important and were open to discuss ACP themselves. Participants perceived ACP as a means of maintaining their autonomy and right to self-determination.
‘If it is up to my children or somebody else to make decisions for me….then I will want that person to know what my wish(es) will be.’ (P3)
An often-cited reason for wanting to discuss ACP was the desire to decrease the burden of decision-making on loved ones. ACP was viewed as allowing one to plan ahead and in so doing, giving the patient and family peace of mind and assurance. One participant viewed the process as strengthening bonds and bringing the family together.
‘I want my loved ones to know what I want for myself ….maybe that can help them feel better…when making decision(s) for me’ (P16)
‘(Advance care planning) help me and my family be closer in our bonds as we go through this whole discussion and planning process together. My family will be clear of what I want’ (P17)
There was also the view that ACP improves quality of care at the end-of-life and prevents unnecessary suffering.
‘Advance care planning is to improve their (the patients’) quality of life at the last stage…and they don't have to suffer' (P12)
There was recognition that death is a reality of life and that ACP helps one to prepare for this eventuality.
‘We feel certain things, you should be discussing…because death is a part of life …it will come, one day, to everyone of us’ (P2)
Significant emotional and cultural barriers to discussing ACP
One of the most frequently cited barriers was the difficulty in openly discussing ACP as it was viewed as a sensitive and emotionally charged topic. There was also a perception of uncertainty of the right time to broach it.
‘We don’t know how to put across to him. And we are not sure when is the right time to talk to him' (P11)
Before contemplating an open discussion of treatment preferences with their loved ones, many participants struggled with diagnosis disclosure and truth-telling. Underlying the reluctance in broaching ACP with patients is the fear that it takes away hope.
‘We’ve been lying to him (about the diagnosis of cancer)…we just refused to break the news to him. I said no, we have to tell him, it's unfair to him. He died not knowing anything.' (P15)
‘My only discomfort is that my uncle will misunderstand my intention of asking him about advance care planning…he may think he is dying and give up hope too early.’ (P17)
While all participants were open to ACP themselves, some were hesitant to discuss ACP with their loved ones, especially if they were of an older generation. Some perceived that the elderly are generally less educated and may have difficulty grasping the concept of ACP.
‘What I find most difficult is… (that) the older generation, they always like to avoid this topic’ (P11)
‘… in her generation, people are not that well versed in these medical terms …what this treatment is all about …all they know is (to) listen to the doctor’ (P3)
Poignantly, the oldest participant openly spoke of his end-of-life preferences and his support for ACP but lamented on the negative reactions his children displayed when he tried broaching the subject.
‘No adequate discussion. Just lightly I told them…they don’t like to listen to me… (telling the patient) “you don't need to really talk about death, this and that”…they are… a little superstitious' (P7)
In certain Asian cultures such as the Chinese culture, there exists a taboo surrounding the open discussion of end-of-life issues.
‘We Chinese are very conservative. We don’t discuss all these things, because it's like, after discuss(ion), something is going to happen…so we try not to discuss all these' (P11)
There was also reluctance about broaching the topic of ACP when one is healthy and a perception that it is not necessary to discuss ACP till an advanced stage of illness.
‘They (people) think …’I'm not living in my last days… So why should I think about advance care (planning)?' (P5)
Role of family and physicians in the ACP process
The family was seen as the point of access to the patient and as those who knew the patient best. Involving the family early in ACP discussions and shared decision-making were frequently cited as key for successful ACP. In some cases, it was perceived important to broach the topic of ACP with family members before approaching the patient. The family unit was seen to be responsible for the care of the patient who may relegate decision-making at the end-of-life to his or her children.
‘First what we must do, we must talk to the family…that’s what you do and know their (the patients') mindset and approach.' (P7)
‘More often than not… as far as my family or our culture is concerned, you leave it to your children to decide for you…for me, probably, my wife, we will leave it to our children… I also feel that family is important, because they are ultimately responsible for the patient’ (P3)
One participant opined that the motivations of the family unit take precedence over the patient's preferences and that the decision-making process is influenced by religious beliefs.
‘We are Catholics, and our religion says that we don’t remove anything, let nature take its course, and we won't terminate life… even if she says terminate, I would say ‘no’, because God has His hands in it and we just give her the best treatment, not to let her suffer, and to pull out the support is ‘no’. So long as she's not suffering in pain… to hold on. At this moment, I want to keep her as long as we can.' (P10)
Doctors, in general, were viewed as having the requisite expertise to recommend appropriate medical care and were trusted to advocate for the patients' best interests.
‘I am sure all doctors are trying their very best to help every single patient… I don’t think we are in a position to decide this is better or that is better…so I think how aggressive it should be…will be left to the doctors to decide' (P5)
‘Most of the time we would usually listen to what the doctor says’ (P6)
The need for an individualised yet systematic approach to ACP
There exists a variation in the degree of openness to ACP among different individuals and family units. Participants spoke about the importance of ensuring that ACP discussions are conducted in a timely and sensitive manner.
‘It depends on how comfortable the family is. Because some families are very superstitious with these kind of things which they wouldn’t want to talk about. And some people…it is a thing which they do openly talk about, so it depends, really' (P2)
‘I think there’s a need to talk… but as I said earlier… at the right time..' (P10)
There were suggestions to initiate systematic efforts at raising public awareness of ACP and to formulate strategies based on feedback from individuals and groups in society.
‘I think this (ACP) should be one area that we need awareness (in)…do things maybe on a broader, nationwide basis… at least this is a starting point. Hear from a bigger pool of people. That may help to formulate some policies’ (P13)
There were concerns expressed that the ACP system should accommodate changes in patients' plans over time, that plans are accessible when needed and that end-of-life care is consistent with the patient's expressed wishes.
‘On the other hand we have to consider that over time people change…I may want to do it now but over time I might change… how will this plan, so called, carry through? So it’s something that … needs to be documented and then, in the right frame of mind, the patient signs. But what happens after that? It's a big question I have' (P4)
Discussion
Our study adds to existing literature in highlighting some of the challenges of ACP in an Asian context, in particular the role of cultural and familial views. Consistent with previous research done locally,7 ,9 only a minority of participants were aware of the AMD. The multidimensional attitudes of the participants reinforce the paradigm of ACP as a complex intervention beyond the filling out of advance directives, requiring an individualised yet systematic approach.
The participants identified several barriers to awareness of ACP including how ACP discussions are difficult to initiate and caregivers' uncertainty of when and how to broach the topic. Some struggled with truth telling, especially if their loved ones were of an older generation. These concerns arose from a motivation to protect their loved ones and there existed a fear that an open discussion of future treatment preferences would take away hope. A study of the views of Korean Americans on end-of-life care recognised that family members had considerable discomfort in initiating ACP conversations and that patients and families look to physicians to initiate and facilitate these conversations.10 A similar reticence to ACP exists in non-Oriental cultures11,–,13. The findings also suggest a generational difference in perception towards communication about end-of-life issues with the older generation being viewed as more closed to such discussions. Contrary to some of these perceptions, research shows that most elderly would like to discuss their future medical care with their healthcare providers14 ,15 and that facilitated ACP with the provision of timely and appropriate information can enhance rather than destroy hope.16
Some family caregivers also felt reluctant about planning for a remote and uncertain future, especially when one is still relatively healthy. This view was reflected in a previous study of elderly Malaysians whereby the majority felt that issues related to future illnesses were best left to fate or to God.15 In another qualitative study of attitudes of older people in the United Kingdom towards making plans for the future, participants acknowledged that planning was beneficial but were keen to postpone making plans for themselves till they were older, in poorer health or when it seemed ‘more appropriate’ to do so.11
A few participants expressed a cultural aversion to talking about end-of-life issues and therefore planning for the future. Cultural, ethnic and religious factors have been shown to strongly influence views on end-of-life care,10 ,15 including the traditional Chinese superstition that talking about death and dying is inauspicious and brings bad luck. Within the same ethnic group, there can be significant interindividual differences in perceptions towards ACP. In previous studies of Chinese, Filipinos and Japanese, a higher educational level and degree of acculturation have been shown to be associated with more positive views towards planning and communication regarding the end-of-life.17 ,18
Despite the wide range of barriers to ACP expressed, there were positive views about its importance and benefits. While some may be reluctant to broach the topic with their loved ones, especially if their loved ones were of an older generation, all participants were open to applying ACP to themselves. Perceived benefits of decreasing burden of decision-making for family, not wanting to suffer, improving quality of life, maintaining personal dignity and autonomy and the need to plan for the inevitable were highlighted in other studies as well.7 ,11 ,15 ,16 ,19 Underlying the importance of facilitated discussions between the patient and family, a participant spoke of the ability of ACP to enhance relationships.
A recurring theme was the importance of closely involving the patient's family in ACP discussions. In some cases, it was viewed as culturally appropriate to first broach the discussion with the patient's family before approaching the patient. In general, patients do perceive family involvement in the decision-making process as important and some are content to let the family take over the process.10 ,12 In East Asian culture, Confucianism and the relative importance placed on an individual's relations with family and society has a deep influence on decision-making, especially at the end-of-life.20 ,21 Within the traditional Asian context, the locus of decision-making may shift from the patient to the eldest son.
Besides traditional and cultural mores, religious views potentially influence the decision making process in ACP.15 One participant expressed a strong religious aversion to any action that might be viewed as terminating life, even if this view contravenes the wishes of the patient. This highlights the fact that surrogate decision-making is not always patient-centred. In the international literature, up to a third of surrogates cannot reliably predict the wishes of patients22 and have identified their own values and preferences as influencing decision-making.23
Another theme that emerged is that physicians know best when it comes to care at the end-of-life and medical paternalism may be relied upon in decision-making. Physicians, with their knowledge, experience and code of conduct are, in general, trusted to advocate for the patient's best interest.10 ,15 This reflects the complexity of decision-making at the end-of-life as patients and families grapple with technical jargon and tumultuous emotions. In most instances, patients and families cannot be left alone to navigate the decision-making process and the physician should provide appropriate recommendations and guidance.
Participants spoke of the different degrees of openness in individuals to ACP. ACP discussions should be sensitive to the needs and emotions of the patient and family and the timing of discussion appropriate. In understanding ACP as a process of health behaviour change, a tailored approach taking into account variability in readiness and attitudes has been advocated as useful.13 It is increasingly recognised that successful ACP cannot be measured by the completion of advance directives alone.24,–,26 The facilitation of communication between patients and loved ones should centre around values and meaning to ensure that patients receive care at the end-of-life consistent with their goals and values. In articulating values and constructs of meaning that affect decision-making, participants identified the desire to enhance relationships with significant others, to avoid suffering and to minimise stress in family members.
Besides individualised interventions, the importance of a systematic approach to planning and implementing ACP based on continual feedback and audit has also been suggested. The need to raise awareness and educate the public on the topic of ACP is recognised in this study and in other local ones.7 ,9 In building an infrastructure that honours preferences, there should also be engagement of stakeholders and institutions. The patient needs guidance in the process, changes in preferences over time should be taken into account and concerns over future applicability of advance care statements addressed. While challenging, a systematic approach to planning and implementation of ACP has been shown to be effective.1 ,27 ,28
Limitations and implications
Although one-to-one interviews and in-depth analysis of emerging themes are well recognised qualitative research methods, it is unlikely that saturation of themes was reached due to the small number of participants recruited. Participants were family caregivers of patients under the medical care of the research team members and a common interview guide was used as a guide for all five interviewers to achieve some homogeneity in interview approach. It would have been more ideal if a single interviewer who had no prior relationships with the participants conducted all the interviews.
Future studies may be more inclusive by examining the views of people who do not converse in the English language, less educated subgroups and those who lack experience in caring for terminally ill loved ones. Future studies may also analyse the influence of educational level, different religious backgrounds and age on perceptions towards ACP.
Conclusions and future directions
Significant barriers to ACP were expressed emphasising the need for a sensitive and individualised approach when broaching the subject. Our findings suggest a need to broaden the concept of ACP beyond the completion of an AMD to facilitated discussions centred on values and relationships. The family unit should be closely involved at each stage. In this modern age when advances in medical technology find ways of extending life with variable outcomes, understanding a person's preferences on future care entails a difficult but necessary conversation. Engagement is key and a co-ordinated approach to public education may be a starting point.
Acknowledgments
The authors would like to acknowledge Dr Wu Huei Yaw and Dr Angel Lee who provided inputs to the design and execution of the study and Mr Edward Poon for his invaluable comments on the manuscript. The authors would also like to thank the participants in the study.
References
Footnotes
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Competing interests None.
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Ethics approval The institutional review board of the National Healthcare Group, Singapore.
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Provenance and peer review Not commissioned; externally peer reviewed.