Perspectives of Singaporean patients and caregivers towards quality of life or quantity of life with disease-modifying treatment in the end-of-life setting

Abstract

Background:

Healthcare providers often struggle to balance the sometimes competing considerations of maximizing quality of life (QoL) and quantity of life with disease-modifying treatment (DMT). These decisions require in-depth dialog between all parties in order to understand the concerns and perspectives of the patient and caregiver in this period.

Objectives:

The objectives of this study were to explore Singaporean patients’ and caregivers’ attitudes towards QoL and DMT, and to examine the reasons behind their beliefs.

Methods:

Participants were given a video vignette of a family discussing how best to care for their mother who is recently diagnosed with cancer and were interviewed regarding their thoughts on QoL and DMT for a 70-year-old patient with stage IV metastatic cancer.

Subjects/Setting:

A total of 21 patients and caregivers were recruited from a tertiary oncology centre.

Results:

Both patients and caregivers show little support for pursuing QoL, despite the likely compromise to the patients’ QoL. These participants believed that not pursuing DMT was tantamount to giving up and accepting death. Whilst patients did accept that in some circumstances a QoL approach would be acceptable, caregivers remained adamant upon a DMT approach. The perspectives of caregivers reflected the influence of the Confucian-inspired practice of filial piety.

Conclusion:

Local sociocultural beliefs and values continue to play a significant consideration in end-of-life decision-making. However, compliance with these beliefs have evolved, with greater consideration given to clinical and QoL factors.

Keywords

End-of-life care patient perspectives caregiver perspective

Introduction

As life expectancy increases in the face of advancements, end-of-life decision-making has become increasingly complex.¹ Intensive care and life-support capabilities have improved to the point that more often it becomes a question of ‘do we’ rather than ‘can we’ keep a patient (PT) alive.² Whilst death is not optional, it may, in some cases, be delayed. End-of-life deliberations require careful consideration, particularly when the potential risks and costs of treatment may have a significant impact upon the quality of life (QoL) of the PT. Such decisions must include a genuine consideration of the PT’s and caregiver’s (CG) wishes.

These dialogs are a daily consideration for cancer PTs, where efforts to maximize quantity of life through disease-modifying treatment (DMT) not uncommonly bring with them risks of worsening QoL. Striking a balance between QoL and DMT options is difficult and often value-laden. Some PTs and their CGs choose to focus on prolonging life despite the decrease in QoL, while others would prefer supportive treatment to maintain their QoL.

We wanted to understand how Singaporean PTs and CGs make such choices and to explore the current attitudes toward end-of-life treatment among PTs and CGs in the Singaporean context, whilst being sensitive to local taboos against discussing end-of-life issues. To circumnavigate these concerns, we adopted a novel video vignette approach in order to better understand the existing perspectives and explore the underlying sociocultural aspects which may affect people’s decisions.

Study methodology

Subjects

We surveyed 21 participants in total – nine PTs and 12 CGs of PTs who are currently on follow-up with the National Cancer Centre Singapore (NCCS) – to explore their prevailing thoughts on end-of-life treatment. Written informed consent was obtained from participants prior to their participation in this SingHealth Centralized Institutional Review Board approved study.

Participants and eligibility criteria

PTs recruited were at least 21 years old, with a cancer diagnosis (any stage), undergoing active chemotherapy treatment at NCCS, and able to understand English. Primary CGs of these PTs were also recruited, also aged at least 21 years old and able to understand English. PTs and CGs meeting the inclusion criteria were identified by the nurses in charge and convenience sampling was employed. Participants’ demographics are provided in Table 1.

Table 1.

Participants’ demographics.

Number of participants (21)	Patients	Caregivers
Number	11	10
Male	6	2
Female	5	8
Age, mean	63.6	59.5
Race
Chinese	10	9
Malay	1	1
Indian	0	0
Other	0	0
Education level
No formal education	0	0
Primary	1	1
Secondary	3	1
Tertiary	4	3
Professional qualifications	3	6
Marital status
Single	0	1
Married	9	8
Divorced	1	0
Widowed	1	1

Methodology

In deference to cultural sensitivities and to produce a less threatening means to explore sensitive topics, a video vignette was shown separately to PTs and CGs. The video scenario shows a Chinese family of three adult children (two daughters and one son) and their mother (Mrs Tan) discussing possible treatment options after Mrs Tan is diagnosed with stage IV cancer. The doctor estimated that Mrs Tan would survive for seven to 10 months if she opted for chemotherapy, but only four months if she did not. The three main topics discussed by the children were as follows:

Siao (daughter) advocates a QoL approach based upon the financial costs of chemotherapy, and a background of financial difficulties within the family for all three siblings.

Wen (daughter) advocates a QoL approach based upon concerns about the possible severe side effects of chemotherapy. This approach does not negate the employment of measures that attempt to reverse any deterioration that was deemed remediable, as long as it did not breach the PT’s goals of care.

Shia (son) advocates for a DMT approach given that chemotherapy would extend Mrs Tan’s life expectancy.

The participants were interviewed and asked for their opinions with regards to Mrs Tan’s children as they advocated for DMT and QoL approaches. Two interviewers (KT, RL) were trained to carry out these interviews.

Coding

The completed transcripts of the audiotaped interviews were labelled with unique numeric identifiers and de-identified. Four members of the investigating team (KT, RL, LK, DS) coded the 21 completed transcripts independently.

We employed the Grounded Theory to identify the key themes within the transcripts. The absence of an a priori framework for and a lack of understanding in decision-making processes in Singapore underpins the adoption of a constructivist approach.^3,4 The constructivist concept of the Grounded Theory allows for the understanding of ‘what influences end of life decision-making processes in Singapore’.⁴ This approach allows for the constructed meaning of social experiences within end-of-life decision-making to be derived ‘through the development of theoretical explanations that are “grounded” in practical experiences’.^5,6 It also takes into account the influences of our clinical experiences, background, and beliefs in coding and interpreting this data.^7,8 The Grounded Theory allows for common themes from various individual mentoring accounts to be categorized. An iterative process was also employed to allow ‘whatever is theoretically relevant to emerge’⁹ and drive subsequent data collection (theoretical sampling).^10,11

An iterative review saw additional questions added to study the impact of changing the key considerations PTs and CGs stated they weighed up in their deliberations. We employed Grounded Theory to identify the key ideas which evolved during thematic analysis. Saturation of thematic analysis was attained by the 13th case and there were no contradictory data identified in the remaining nine cases. All the members of the team discussed any discordance in the coding and a majority verdict was applied.

Not all questions were answered by the participants, primarily due to fatigue or the commencement of their treatment.

Results

In total, 66.7% (14 of 21) of the participants had a clear preference for either DMT or QoL, while the remaining did not answer this question. Out of the 14 participants, 75% (6 of 8) of the CGs and 100% (6 of 6) of the PTs preferred to have treatment to prolong life (DMT) potentially at the expense of QoL. Quotes illustrating their reasons and key considerations are summarized in Tables 2 and 3.

Table 2.

Quotes to illustrate patients’ and caregivers’ viewpoints on preference for disease-modifying treatment (DMT).

DMT	Caregivers’ (CG) viewpoints	Patients’ (PT) viewpoints
For DMT
Not having treatment would be akin to accepting death	‘No one wants to say no to treatment and say let you just slowly rot to death’ (11CG)	‘It’s really giving up. You won’t even live for one year’ (13PT)
Akin to suicide	‘You’re trying to give up their life’ (35CG)	‘There’s life sentence already’ (15PT)
Perseverance	‘So it’s really looking at the results of the chemo than the side effects’ (37CG)
A chance	‘There’s always a chance’ (27CG)
Not give up	‘You never never give up. You must always tell yourself. Got confidence. You can fight through’ (35CG)	‘I believe you don’t give up you need to be positive’ (23PT)
Save life	‘You want to go chemo is actually ah saving your life’ (29CG)
Societal pressure to continue treatment	‘Think you will always face this thing from relatives or friends’ (27CG)
Societal pressure on family to encourage continued treatment	‘In a Chinese society, most people blame the children’ (37CG)	‘You’re not helping her at all. You don’t help the parents, it’s also not right’ (51PT)
Cultural pressure	‘People in our culture urge continued treatment’ (41CG)

Table 3.

Quotes to illustrate patients’ and caregivers’ viewpoints on preference for quality of life (QoL).

For QoL	Caregivers’ viewpoints (CG)	Patients’ viewpoints (PT)
Debilitating side effects	‘Last time we also don’t understand this chemotherapy [can] hurt your body so much’ (46CG)	‘Maybe the body cannot take it, ah, is a different thing… the individual ah, see the condition or not ah’ (5PT)
Costs		‘It all depends on the financial status ah. Cause very expensive’ (47PT)

Four themes were apparent from these transcripts; we discuss each in turn.

1. CGs prioritized DMT over QoL, associating QoL with giving up and accepting death

Our study found little support amongst CGs towards a QoL approach in end-of-life care; 75% of the CGs indicated that they would advise Mrs Tan to opt for treatment. The themes collated from their responses revolved around beliefs that not prolonging life would be akin to giving up on life and accepting death. As one put it, saying no to treatment was equivalent to letting one ‘slowly rot to death’ (11CG). There is a sentiment that stopping treatment and pursuing QoL felt like ‘giving up’ (37CG, 35CG).

The pursuit of a DMT approach, on the other hand, was associated with maintaining hope and positivity. Common reasons to undergo treatment included the ‘chance’ that treatment could extend DMT (27CG, 35CG). Others were inspired by tales of survivors who have ‘outlived medical expectations’ (27CG). As a result, some CGs would urge their family member to continue undergoing treatment, even in the face of negative side effects. One mentioned that the PT ought to persevere with treatment up to the point when the body simply cannot take any more (11CG). There is a sense that treatment is worth enduring discomfort for and sacrificing some QoL.

We did not find any quotes related to spirituality or religious beliefs underpinning care determinations.

2. PTs held similar views to CGs but were more open to QoL when treatment is burdensome and costly

PT responses regarding QoL versus DMT mirrored similar themes as that of the CGs. Again, respondents felt that not opting for treatment was equivalent to not helping the PT or ‘giving up’ on the PT (13PT, 51PT). Having treatment helped Mrs Tan ‘remain positive and keep trying until the end’ (23PT).

Two key factors underpinned PTs advising Mrs Tan to consider a QoL approach to therapy. First, the cost of therapy might become unaffordable (47PT), and second, there may come a point when ‘the body may not be able to tolerate treatment’ and it would be better to prioritize QoL (5PT).

3. The emphasis on DMT is validated and, indeed, driven by sociocultural pressures on the PT and CG

CGs and PTs reported that sociocultural pressures influenced their advice given to Mrs Tan. They believed that to seek treatment for their loved ones would be in keeping with being filial. CGs reported that their relatives and friends may ‘judge’ them should they decide not to seek treatment for a terminally ill loved one (27CG). Some CGs and PTs saw the daughters of PTs as being irresponsible or insincere for not advocating treatment for their parent (35C, 37C, 51PT), even if the QoL becomes compromised.

4. Effect of previous experience with the healthcare system

One CG recounted of the difficult experience one of his parents previously had with chemotherapy, which made him warier about advising the other parent to have chemotherapy this time around (46CG).

Cos I came across last time my father also. He got throat cancer. Then actually ah, he also don’t want go for chemotherapy. But then the doctor, doctor advised my father. Advised him to go. Then he go for this chemotherapy, the body become so weak, cannot walk. And after two year or so, also pass away. (46CG)

Several subjects referenced stories of people they knew who had outlived their medical prognosis as a source of hope. For them, it supports their belief that there is always a chance to overcome the disease and that the doctor’s say is not necessarily final. This may lead to a poorer reception of palliative counselling and hinder end-of-life planning.

The doctors gave me a few months, but then now I’m alive. (3CG)

It’s true ah, sometimes, ah, the doctor say three months six months only, they will live five, 10 years also know. I heard about so many people. (4PT)

Discussion

In providing Mrs Tan with advice based on little background on her beliefs, values, goals, and only basic information on her current illness, PTs and CGs draw upon their own understanding of her situation and their own perspectives and beliefs. There is a clear sense that DMT approaches are preferred given PTs’ and CGs’ justifications of their decisions. This in itself is unsurprising. However, when the rationale for such a choice – in the face of a poor prognosis, limited survival benefits, and negative consequences for QoL – are considered, there are two critical considerations to be addressed.

Firstly, there is the misconception that the chemotherapy is curative. A large national cohort study carried out in the United States previously revealed that up to 81% of PTs with stage IV colorectal cancer did not understand that their chemotherapy was unlikely to be curative.¹² This type of misconception could well be the case here as well, despite efforts to educate CGs and PTs on the extent of the disease and the likely impact of treatment. It highlights the need for re-emphasizing clinical considerations. Careful discussions, often breaching local taboos about death and dying, are required here. There is also a need to address practices such as familial determination, collusion, and the circumnavigation of direct PT involvement in end-of-life decision-making if decisions about the goals of care are to be made equitably and in a way that would truly reflect the PT’s choices. Efforts are already in place to delve into PT wishes with the employment of Advance Care Planning in Singapore and concerted efforts to confront familial determination and collusion. There is also the recognition that without such discussions, the burden of overtreatment without any actual health benefits will persist.^13,14

There is poor understanding of the palliative care options. There is a need to discuss QoL approaches in more detail when the notion amongst some of our participants is that treatment with chemotherapy offers a ‘chance’, and opting for comfort care and symptom control of the conditions is tantamount to ‘giving up’ and sometimes even suicide. Further, as stoicism is seen as a positive trait in Chinese culture, for the PTs, accepting chemotherapy with its associated discomfort may be viewed as their duty.^15,16 An emphasis on Confucian-inspired beliefs sees QoL options fostered by CGs as failures in filial duties and ‘abandonment’ of the PT. It is well acknowledged that our culture and society shapes the way we perceive death and approach end-of-life issues.^17,18 The impact of prevailing cultural considerations is evident here in local perspectives on end-of-life care.

In Singapore’s predominantly ethnic Chinese society, the Confucian principles of filial piety remains pervasive.^19,20 Confucianism fosters social harmony and places great value on collectivism and the family. Elders are venerated and ancestor worship is practiced. Filial piety dictates that children are obligated to ensure their parents live as long as possible.⁷ It is, thus, unsurprising that our participants, especially our CGs, continue to associate DMT approaches with compliance with their filial obligations. Failure to do so is likely to bring about societal disapproval, familial censure, and a loss of ‘face’.²¹ Such a loss of familial honour is fearfully avoided in local settings.²² A 2013 survey conducted in Singapore reported that of respondents who were opposed to sending a loved one to a hospice, 37% cited the reason for doing so was that it would appear that they were giving up on them.²³ This notion is reflected in our data, highlighting the impact upon end-of-life care decisions, QoL options, and place of care.

Yet, our findings suggest that concepts with regards to QoL options have evolved and have begun to influence local end-of-life decision-making. Our findings that PTs are more open to QoL options are consistent with prior literature comparing PTs and their CGs. People with less experience in the distress of illness, such as PTs shortly after being diagnosed with cancer, and the general public, typically prefer maximizing DMT.²⁴ As with previous studies, our study reveals that QoL approaches become more important in PTs who experience serious illness, or when death is nearing.²⁵ PTs were open to QoL approaches when costs and disease burdens become overwhelming and PTs with experience of chemotherapy have increased preference towards maintaining QoL. This is the first time this has been evidenced locally. Neither PTs nor CGs appeared to attribute their decisions to spiritual or religious beliefs.

The impact of treatment costs also echoes prevailing data. A recent survey found that the most prevalent fear about death and dying in Singapore was that of medical costs.²³ Such fears stem from not wanting to become a financial burden to one’s family and it is not uncommon that PTs are less willing to pay for DMT than their family members.²⁶

The enduring effects of previous experiences with healthcare professionals also impact the decision-making processes. This appears to be the first time such factors have been discussed in the local end-of-life decision-making context and serves to remind healthcare professionals of the long-term ramifications of their interactions with PTs and families. In many cases, bereavement support and follow-up is critical, if only to support family members and CGs.

Limitations

We recognize that there may be an inherent selection bias as the participants in this study were CGs and PTs who were already receiving chemotherapy to treat their disease. To improve the study, we would have liked to have included other cancer PTs who were receiving best supportive care for a more complete sample of their views.

A conspicuous gap in the data collected relates to a lack of mention of religious, spiritual, and existential values and beliefs, and their relationship with the decisions made. Whilst future studies will address this specific gap, it may be that PTs and CGs see spiritual, existential, and religious issues as being enmeshed with the cultural and practical considerations that underpin their positions.

Conclusion

To our knowledge, this is the first time that video vignettes have been used to study sociocultural issues at the end of life. This report is the first of a series of studies looking at end-of-life decision-making. These studies will involve PTs at different stages of their cancer journey and will later be employed in PTs with chronic diseases and life-limiting conditions. We hope that these studies will help us better understand end-of-life decision-making in Singapore.

This study does echo growing local data that suggests that the influence of Confucian and family-centric beliefs on healthcare decision-making are evolving. The implications of such an evolution has far-reaching effects upon end-of-life care and palliative medicine. We welcome further studies in these areas.

Footnotes

Declaration of conflicting interests

None declared.

Funding

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

References

Chan

WC.

Singapore’s ageing population: managing healthcare and end-of-life decisions. Abingdon: Routledge, 2011, p.222.

Papadimos

Maldonado

Tripathi

. An overview of end-of-life issues in the intensive care unit. Int J Crit Illn Inj Sci 2011; 1: 138–146.

Kennedy

Lingard

LA.

Making sense of the grounded theory in medical education. Med Educ 2006; 40: 101–108.

Creswell

. Grounded theory designs. In: Paul

(ed.) Education research: planning, conducting and evaluating quantitative and qualitative research. 4th ed. Harlow: Pearson, 2013, pp.449–488.

Lingard

Albert

Levinson

Grounded theory, mixed methods and action research. BMJ 2008; 337: a567.

Sbaraini

Carter

Evans

. How to do a grounded theory study: a worked example of a study of dental practices. BMC Med Res Methodol 2011; 11: 128.

Charmaz

Grounded theory: objectivist and constructivist methods. In: Denzin

Lincoln

(eds) Handbook of qualitative research. 2nd ed. Thousand Oaks, CA: SAGE, 2000, pp.509–535.

Charmaz

Constructing grounded theory: a practical guide through qualitative analysis. London: SAGE, 2006, p.208.

Wimpenny

Gass

Interviewing is phenomenology and grounded theory; is there a difference?

J Adv Nurs 2000; 31: 1485–1492.

10.

Baker

Wuest

Stern

PN.

Method slurring: the grounded theory/ phenomenology example. J Adv Nurs 1992; 17: 1355–1360.

11.

Starks

Trinidad

SB.

Choose your method: a comparison of phenomenology, discourse analysis, and grounded theory. Qual Health Res 2007; 17: 1372–1380.

12.

Weeks

Catalano

Cronin

. Patients’ expectations about effects of chemotherapy for advanced cancer. New Engl J Med 2012; 367: 1616–1625.

13.

Phua

Kee

Tan

. End-of-life care in the general wards of a Singaporean hospital: an Asian perspective. J Palliat Med 2011; 14: 1296–1301.

14.

Defanti

TR.

Changing the cultural view and coverage of end-of-life care. Am J Hosp Palliat Care 2010; 27: 365–368.

15.

Tung

Pain beliefs and behaviors among Chinese. Home Health Care Manag Pract 2015; 27: 95–97.

16.

LB.

Clinical review: ethics and end-of-life care for critically ill patients in China. Crit Care 2013; 17: 244.

17.

Kim

SH.

Confucian bioethics and cross-cultural considerations in health care decision-making. J Nurs Law 2005; 10: 161–166.

18.

Steinberg

SM.

Cultural and religious aspects of palliative care. Int J Crit Illn Inj Sci 2011; 1: 154–156.

19.

Chia

YT.

The elusive goal of nation building: Asian/Confucian values and citizenship education in Singapore during the 1980s. Br J Educ Stud 2011; 59: 383–402.

20.

Koon

Krishna

LKR

. Perspective from Singapore. Asian Bioeth Rev 2014; 6: 420–427.

21.

Lalit

KRK

Tay

Watkinson

. Advancing a welfare based model in medical decision. Asian Bioeth Rev 2015; 7: 306–320.

22.

MZJ

Krishna

LKR

Goh

. The physician-patient relationship in treatment decision making at the end of life: a pilot study of cancer patients in a Southeast Asian society. Palliat Support Care 2013; 11: 13.

23.

Lien Foundation. Lien Foundation survey on death attitudes (general population), http://lienfoundation.org/sites/default/files/Death%20survey%20Presser%20Final%20-%20Combined_0.pdf

24.

Rietjens

van der Heide

Voogt

. Striving for quality or length at the end-of-life: attitudes of the Dutch general public. Patient Educ Couns 2005; 59: 158–163.

25.

Voogt

van der Heide

Rietjens

. Attitudes of patients with incurable cancer toward medical treatment in the last phase of life. J Clin Oncol 2005; 23: 2012–2019.

26.

Malhotra

Farooqui

Kanesvaran

. Comparison of preferences for end-of-life care among patients with advanced cancer and their caregivers: a discrete choice experiment. Palliat Med 2015; 29: 842–850.