Patient and family involvement in decision making for management of cancer patients at a centre in Singapore
- 1Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Republic of Singapore
- 2Department of Palliative Medicine, National Cancer Centre Singapore, Singapore, Republic of Singapore
- 3Lien Centre for Palliative Care, Duke-NUS Graduate Medical School Singapore, Singapore, Republic of Singapore
- Correspondence to Grace Meijuan Yang, Department of Palliative Medicine, National Cancer Centre Singapore, 11 Hospital Drive, Singapore 169610, Republic of Singapore;
Background The practice of patient autonomy within the prevailing bioethical framework in the West appears increasingly at odds with the prominent influence of the family in medical decision making in the Asian culture. The actual extent of involvement of patient versus the family in the decision making process for cancer management in clinical practice is largely unknown in Asia.
Aims (1) To describe patient and family involvement in healthcare decision making in actual practice, and to determine whether those practices are consistent with Singapore law; and (2) to act as a pilot for a larger prospective study examining the preferences of cancer patients on the decision making process, and the reasons for excluding patients from that process.
Methods A retrospective review of patients who died in an oncology ward in Singapore General Hospital from February to April 2011. Patient and family involvement in discussions on (1) disclosure of diagnosis, (2) initial treatment decisions and (3) initiation of a ‘maximum ward management’ order was evaluated by reviewing case notes completed by healthcare professionals.
Results Data were collected for 55 patients. Involvement of patients and families at first disclosure of diagnosis was noted in 61% and 64% of cases, respectively. In 12% of cases, the family requested withholding of the diagnosis from the patient. 86% of patients were involved in the initial treatment decisions, and their family was involved in 65% of cases. Only 9% of the 32 alert patients were consulted in end of life decisions. Factors associated with lower patient involvement were advanced age and inability to speak English.
Conclusions While most cancer patients are involved in the healthcare decision making process during the early phase, familial involvement gains prominence as the disease progresses.
Decision making in oncology is complex and the best treatment approach for each patient turns on biopsychosocial, cultural, ethical and practical considerations. Therapeutic options such as chemotherapy may entail significant symptom, financial, psychological and familial burden in exchange for modest extensions in life expectancy.1 ,2 The choice between various options is sometimes unclear because balancing the benefits and burdens of each imperfect option may not produce a clear result. At the end of life, the goals of care should shift from cure and prolonging survival to quality of life and preservation of dignity. However, the patient's family members may have different opinions on when this shift should occur.
The healthcare decision making process in Asian societies, including Singapore, tends to prioritise the family above the individual, whereas the competent patient is the healthcare decision maker in western developed nations, such as the UK and USA.3–5 Healthcare decision making in such nations is guided by the ‘four principles’ of the western bioethical framework—autonomy, beneficence, non-maleficence and justice.6 ,7 Some academics have questioned whether a separate code of ethics should be applied in Asian societies to better capture the values and beliefs of the Asian society.8–11 Such questions are unsurprising given the prevailing role of the family within the deliberative process, which is very different to the social ethos of western societies. The prominence of familial influence in healthcare decision making commonly trumps the patient's own preferences and appears to increase with the gravity of the decision. Thus in many end of life decisions, the family primarily steers the course of medical care.12 ,13 This situation is compounded by collusion where the relatives agree to limit the medical information being given to the patient, fearing that such knowledge would extinguish hope and cause the patient distress.14 Where collusion is present, patients often do not know their diagnosis, or the true extent of it, and consequently are unable to engage in the healthcare decision making process.15
Singapore is a metropolitan city but its modern façade may mask its traditional Asian societal roots. Familial influence in healthcare decision making is strong here, especially for elderly patients, whom the family perceive as vulnerable. Interestingly, even though the healthcare decision making in actual practice is family centric, Singapore laws emphasise patient autonomy.16 ,17 Even though healthcare professionals may discourage it, eventually, they may go along with it even though they know it is inconsistent with the law.15 There is no legal basis for collusion or excluding the patient from healthcare decision making, and the patient's relatives have no legal authority to make serious medical decisions on the patient's behalf.16
To this end this study was formulated with the following aims:
To describe patient and family involvement in healthcare decision making in actual practice, to reflect on the ethical implications of such practice and to determine its consistency with Singapore law.
To act as a pilot for a larger prospective study examining the preferences of cancer patients on the healthcare decision making process, and the reasons why patients may be excluded from that process.
This was a retrospective study of patients who died in an oncology ward in Singapore General Hospital over a 3 month period from 1 February 2011 to 30 April 2011. Ethics approval and waiver of patient consent was obtained from the Singhealth Centralised Institutional Review Board. A total of 101 patients were identified based on the inclusion criteria but 46 patients were excluded after applying the exclusion criteria, leaving a final sample size of 55 patients (table 1, figure 1).
Two investigators (Chong and Quah) collected the relevant data for the study from the patients’ outpatient/ambulatory care and inpatient case management records. We used a standardised data collection form and a standardised protocol to extract, classify and record the data from the case notes. To ensure data collection consistency, both investigators reviewed 15 of the case records separately and compared the data collected.
The information we extracted included patient demographics, age at death, primary site of cancer, ability to communicate in the English language and the patient's mental status. Clinicians recorded the patient's mental status at various stages of care and categorised the patient as follows: ‘alert’, ‘confused/drowsy’ or ‘unresponsive/unconscious’. Patient and family involvement in discussions on (1) disclosure of diagnosis, (2) initial treatment decisions and (3) initiation of a ‘maximum ward management’ order was determined by reviewing the case notes completed by clinicians and allied healthcare workers. ‘Maximum ward management’ is a clinician initiated do not attempt resuscitation order that also states a patient should not be admitted to the intensive care unit. It is routine practice for clinicians and allied healthcare workers to record the following in the case notes: (a) when, where and who were present at a care or treatment discussion, and a summary of what transpired, (b) the patient's mental status at each care stage and (c) treatment or care decisions, including a ‘maximum ward management’ order. If the patient was physically present at a discussion, we determined that he/she was involved in the decision making process.
We explored the potential associations between patient characteristics and extent of patient/familial involvement. Patient characteristics compared included age (<65 years vs ≥65 years), gender, ability to communicate in the English language and treatment intent (curative vs non-curative intent). Given the limited sample size, we adopted a univariate analysis approach using Fisher's exact test, and analysed the data using IBM SPSS Statistic V.20.
There were a total of 55 patients (26 men, 29 women) aged between 34 and 85 years (mean 65 years). Duration from diagnosis of cancer to death ranged from 7 to 2726 days (mean 607 days). The most frequent sites of the primary tumour were lung (20%), breast (16%), stomach (13%), colorectal (13%), liver (11%) and pancreas (5.5%), and these findings are consistent with the top six most frequent cancer deaths in Singapore.18 Ethnic distribution of study patients also correlated well with national statistics, with 49 Chinese (89%), four Malay (7.3%) and two Indian (3.6%) patients.18 There were 23 English speaking patients. The total number of outpatient visits for individual study patients ranged from 1 to 81 visits (mean 14), and total length of inpatient stay ranged from 2 to 135 days (mean 32.5 days).
Disclosure of diagnosis
At the time of diagnosis, 51 patients were alert and four patients were drowsy or unresponsive. From the case records of the 51 patients, 44 included documentation of the first disclosure of the diagnosis. Seventeen (39%) patients were excluded from the discussion and 27 patients (61%) were included in the discussion (figure 2). It is unclear from the case records whether it was the physician who chose to initiate discussions with the family prior to disclosing the diagnosis to the patient or if it was the family who approached the clinician and requested that they be briefed on the patient's clinical situation before the patient was informed.
Forty-five (88%) of 51 alert patients were told of their diagnoses within 28 days of the cancer diagnosis (figure 3). Regarding the six non-disclosures, the request to keep the diagnosis a secret from the patient was initiated by the patient's family. No rationale for such a request was documented, and the reasons why the clinician chose to comply with that request were not explained in the case notes. However, two of these six patients were eventually told their diagnosis, more than 1 month later. On univariate analysis, we found that advanced patient age (≥ 65 years) was associated with patient non-involvement at first diagnosis disclosure (p<0.001, OR 13.3, 95% CI 2.9 to 60.7). Advanced patient age was also found to be associated with families requesting that the diagnosis not be disclosed to the patient (p=0.007, OR=∞).
Decision making for initial treatment approach
During the initial treatment discussion, 51 patients remained alert. Of those 51 patients, seven (14%) were excluded from the initial treatment decision making process, so that decisions were made between families and clinicians only. Advanced patient age (p=0.004, OR=∞), female gender (p=0.027, OR 9.5, 95% CI 1.1 to 86.2) and non-curative intent for the initial treatment (p=0.029, OR=∞) were found to be associated factors in excluding the patient in these circumstances. Of the 44 patients (86%) who were involved in the initial treatment decisions, 23 subsequently changed their treatment approach from ‘curative’ to ‘non-curative’. In five of these 23 patients, only the families were involved in the discussions for the treatment changes, thereby excluding the patient.
End of life decision making—‘maximum ward management’ order
In this phase, 52 patients had a ‘maximum ward management’ order documented in their case notes. Thirty-two of those patients were alert. However, only three of the 32 alert patients (9.4%) were consulted regarding this decision although the families were involved in all of them (figure 4).
Of the 44 alert patients with documented first disclosure of diagnosis, family presence at the first disclosure was noted in 28 cases (64%). Whether this was done with the patient's consent (direct or indirect) could not be determined from the case records. The family was also included in the decision making for the initial treatment in the majority of cases (65%). Inclusion of the family at the first diagnosis disclosure was associated with the following patient characteristics: advanced patient age (p<0.001, OR 14.8, 95% CI 2.8 to 79.3) and inability to speak English (p=0.002, OR 9.1, 95% CI 2.1 to 40.4). Patient characteristics that were associated with the involvement of the family in deciding on the initial treatment approach were advanced patient age (p<0.001, OR 18.4, 95% CI 3.5 to 95.5), patient's inability to speak English (p=0.013, OR 4.6, 95% CI 1.3 to 15.7) and non-curative treatment intent (p=0.046, OR 3.3, 95% CI 1.0 to 11.1). Gender and presence of metastases were not found to be associated with family involvement in both situations.
The main finding of this study was that patients became less involved in their healthcare decision making as their disease progressed whereas the family played an increasingly large role in this respect as the patient's condition deteriorated.
There is a distinction between withholding the diagnosis from the patient and involving the family members in the treatment decision making process with the patient's consent. Doctors should balance the family's request to withhold the diagnosis from the patient with the patient's desire and right for information when deciding whether or not the patient should be involved in the decision making process.19 Excluding competent patients from the treatment decision making process violates the Code of Ethics of the Singapore Medical Council because the doctor has breached patient autonomy and confidentiality.20 Arguably, such a rigid medical stance takes little account of wider psychosocial considerations, such as regnant family centric cultural and social practices.14
The family members’ desire to ‘protect’ and support the patient may explain why families were commonly involved in the first disclosure of the diagnosis and during decision making for the initial treatment. This phenomenon could also be explained by a broader concept of autonomy, often found in the Asian culture, which entails the need for engaging and interacting in a network of relations with others, as opposed to the western definition whereby decisions are solely the prerogative of the individual.21 ,22 Clinicians inadvertently seek familial support regarding the patient's treatment decisions because of the potential repercussions of the illness and decisions on the family.23 ,24
The relatives’ reluctance to tell the patients the truth is sometimes misplaced and may potentially lead to critical legal and ethical problems. Patients who have not been sufficiently informed of their diagnosis and/or treatment options cannot give informed consent to treatment. Relatives cannot consent on behalf of competent patients.25 Patients are deprived of their autonomy when their relatives and doctors collude to exclude them from the decision making process. Doctors who treat patients without their consent may be liable for battery.
The findings of this study demonstrates that the policy reflected in the relatively new Singapore Mental Capacity Act (SMCA) of promoting a person's right to make their own decisions is not always practised in healthcare settings in Singapore. In England, it is a given that patients with healthcare decision making capacity have the autonomy to make their own healthcare decisions. The SMCA, which came into force in 2010, is based on the Mental Capacity Act of England (EMCA) which reflects this general right of autonomy in decision making.16 ,26 Although we have not adopted the EMCA verbatim, the underlying rationale of promoting autonomy remains. The SMCA supports a person's ability to make their own decisions when they have capacity to do so. It is generally unacceptable to exclude a person from the healthcare decision making process because everyone has the right to decide what happens to their own bodies. However, the EMCA and SMCA do not prevent a person from involving their family members or loved ones in the decision making process if that is the person's preference. In fact, the law recognises the importance of family by requiring that the decision maker consider the views of relatives and loved ones when the person lacks capacity to make a decision himself/herself.16
As a general rule, healthcare professionals should be guided by the preferences of the competent patient in matters concerning diagnosis disclosure and healthcare decision making. Arguably, the best interest decision making framework may explain the practice of excluding patients from the healthcare decision making process. The SMCA codified the best interest framework to guide decision making for persons who lacked capacity to make their own decisions.16 Relatives may think they are making decisions in the patient's best interests, and maybe they are. However, it is difficult to see how a decision can be made in the competent patient's best interests when the patient has been excluded from the process. A better approach is to involve patients rather than exclude them. Ask them what they want. Do they want to cede decision making power to their relatives? If they do, their wish should be respected.27 If they want to involve the family members in weighing up their treatment options but ultimately make their own decisions, then we should respect that too.
Conflict between the principles of autonomy versus beneficence and non-maleficence makes it difficult to determine the ‘right’ course of action to take. When using the western application of the ‘four principles’ approach where the principle of autonomy is first among equals, the practice of patient non-involvement shown in this study is unethical. However, if the principles of beneficence and non-maleficence are prioritised, in line with Chinese medical ethics, then the findings of this study can be interpreted as ethical practice.10
Denial of a patient's right to information and self-determination could arguably be justified by the principle of non-maleficence because involvement of patients in such discussions could burden them emotionally and psychologically with the prospect of impending death.28 For many patients the word ‘cancer’ is seen as a byword for ‘death’, and given that discussion about death remains taboo among our population, it would appear that ‘cancer’ associated discussions are also treated in the same way.29 In many cases, the rationale for such a stance is the desire to maintain hope and protect their loved one from despair. Thus, in line with the principle of beneficence, family members of patients with newly diagnosed cancer often attempt to conceal or provide moderate disclosure of these diagnoses. Our findings demonstrated that advanced age was associated with the non-involvement of patients. The social circumstances of an elderly patient are more likely to foster a greater desire to protect the patient from potential psychological harm and reduced physical well being as a consequence of knowing about the cancer diagnosis.30
Patient autonomy is not considered an absolute in Japan, Korea or China where treatment decision making is usually the domain of the family members and clinician. In Japan, patient autonomy is not a ‘consistently important domain’ of the Japanese formulated ‘Good death inventory’.31 ,32 Instead, the cultural concept of omakase, which entails entrusting all decision making to the family and clinician, is an acceptable and prevalent practice.33 Even so, a recent Japanese study showed greater involvement of terminal cancer patients in the ‘do not resuscitate’ decision, suggesting that there may be changing attitudes in end of life decision making.34 Family harmony is also recognised as taking priority over individual interests in Korea. Family members often assume the role of decision maker if the patient's illness represents a substantial socioeconomic burden on the family.35 ,36 In China, the focus is on allowing the patients to rest and concentrate on recovering. Consequently, clinicians usually approach family members directly to make decisions, even if it is at the expense of the patient's autonomy.8 ,37
Recent studies in the East Asian setting have shown that patients who are not involved in decision making have a better quality of life.12 ,38 The interview based study conducted on Chinese home based advanced stage cancer patients showed that patients who did not know their diagnosis had a better physical and emotional quality of life.12 In a Korean survey of terminal cancer patients, those who were aware of their illness and who actively participated in decision making had lower scores in ‘physical and psychological comfort’, ‘environment comfort’ and ‘emotional functioning’. Therefore, the family's concern that the patient's physical and psychological well being will be negatively affected if the patient knows the diagnosis may not be totally unfounded and should not be dismissed lightly.36
Our results on end of life management were similar to a recently published study that reported only 6.2% of the alert and conversant patients with ‘maximum ward management’ orders were involved in discussions on these orders.38 The authors suggested that the use of integrated care pathways and the introduction of a palliative care service may be able to deal with this deficiency in end of life care. Our study was conducted in the setting of an oncology ward that utilised an end of life care pathway and had the support of a fully fledged multidisciplinary palliative care team that had been established for several years. Therefore, the use of end of life pathways and a palliative care service have not influenced the practice of excluding the patient from healthcare decision making in Singapore, even though other studies have shown that they improve patient care at the end of life. Perhaps the underlying assumption that patient involvement in end of life decision making is an indicator of good end of life care needs to be questioned in the Asian context. Further research could be done to explore this notion further.
Strengths and limitations
The strengths of this study are that the ethnic makeup of the sample size corresponded with the general population and both genders were almost equally represented. However, the generalisability of the results and study conclusions are restricted by our small sample size. There is a risk of data collection bias because this was a retrospective study that reviewed patient case notes. Documentation bias may also be present because the accuracy of the results depends on the quality of the clinician record keeping. Another limitation is that we assumed the patient was involved in the decision making process if they were physically present at the discussion. However, this may not always be the case—for example, if the discussion was deliberately conducted in English so that the patient, who does not understand English, is excluded from taking part. Finally, the study was conducted in a tertiary oncology unit with an established palliative care service, so the results may not fully reflect general practice in an Asian society.
This study has described patient and family involvement in healthcare decision making in actual practice in Singapore, rather than the views of healthcare professionals on what the practice should be. Some studies conducted in Singapore have shown that the majority of healthcare professionals do not think that patients should be excluded from the decision making process.39 ,40 The discordance between the views and actual practice of healthcare professionals is a good foundation for a qualitative study to explore the extent to which this occurs and the reasons why it does. This study can also serve as a pilot for a larger prospective study that can explore (1) cancer patients’ attitudes and preferences on their healthcare decision making role, (2) which parties decide when and whether to include or exclude patients from the decision making process and (3) the reasons why this occurs.
While there is an established western legal and bioethical framework for medical decision making, the Asian cultural perception and attitudes towards terminal illness and death mean that a family centric rather than patient centric approach is employed. The accelerated economic development in many Asian nations has advanced the management of terminal illnesses, but a significant sociocultural difference exists in the approach to healthcare decision making. There is an urgent need to find an ethically and socially acceptable balance between the rights of the individual and familial influence in Asian societies, which is likely to remain a challenging task for many healthcare professionals in oncology and palliative care.
The authors are grateful to Professor Scott A Murray for his advice in drafting this article. The authors thank Ms Jayanthi Chellaiyan, Ms Norsheha Bte Ismail and staff of the Medical Records Office, National Cancer Centre Singapore, for their kind assistance.
Competing interests None.
Ethics approval Ethics approval and waiver of patient consent was obtained from the Singhealth Centralised Institutional Review Board.
Provenance and peer review Not commissioned; externally peer reviewed.
- Received 14 July 2012.
- Revision received 25 November 2012.
- Accepted 4 December 2012.
- Published Online First 3 January 2013
- Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions