Advance care planning and end-of-life care preferences in community-dwelling Hong Kong Chinese elders with medical problems and their next of kin: a cross-sectional study

Abstract

Objectives. The present study aimed to determine advance care planning and end-of-life care preferences of community-dwelling Hong Kong elders with medical problems and their next of kin, and to determine the predictors of their preferences. Methods. Community-dwelling Chinese aged >65 years who attended one of the six medical and geriatric out-patient clinics or geriatric day hospitals between July 2012 and August 2013 were included, as were their next of kin. Interview was conducted based on a structured questionnaire. Socio-demographic data, comorbidities, functional status measured by the Katz score, self-perceived health status, and life satisfaction were collected. Preferences for end-of-life care and advance care planning were explored using hypothetical scenarios of an advanced illness. Associations between end-of-life care preferences and other variables were determined. Preferences for end-of-life care were compared between the elders and their next of kin. Results. A total of 153 female and 114 male elders (mean age, 79.2 years) and a total of 128 female and 74 male next of kin were included. Respectively for the elders and next of kin, 87.6% and 88.1% agreed to let 'nature to guide the elder life'; 83.5% and 97% preferred adequate pain control to keep them 'free of pain' despite the side-effect of drowsiness; 65.5% and 43.6% preferred not to use cardiopulmonary resuscitation; 64.8% and 45.1% preferred not to use intubation; 74.9% and 53.9% preferred not to use nasogastric tube feeding; 43.5% and 59.4% preferred'repeated courses of antibiotics for infection despite no improvement noted'; 91.6% and 87.9% preferred small oral feeding (rather than the use of nasogastric tube); and 75.5% and 65.6% preferred oral medications (rather than non-invasive positive pressure ventilation). For advance care planning, respectively for the elders and next of kin, 58.4% and 71.4% preferred the doctor to discuss advance care planning with both the patient and family members; 7.9% and 15.1% preferred the doctor to discuss with family members only; 21.7% and 7.0% preferred the doctor to discuss with the patient only; and 11.6% and 6.5% preferred to let the doctor to make decisions. There were significant discordance between elders and next of kin in terms of treatment preference in case of short of breath (p=0.004) and all end-of-life care preferences, except for 'let nature guide one's life'. Conclusions. There was significant discordance in end-of-life care preferences between elders and their next of kin. In order to deliver end-of-life care in accordance with elder's values and beliefs, advance care planning should be discussed with them before they become too ill to do so.

Headnote

ABSTRACT

Objectives. The present study aimed to determine advance care planning and end-of-life care preferences of community-dwelling Hong Kong elders with medical problems and their next of kin, and to determine the predictors of their preferences.

Methods. Community-dwelling Chinese aged >65 years who attended one of the six medical and geriatric out-patient clinics or geriatric day hospitals between July 2012 and August 2013 were included, as were their next of kin. Interview was conducted based on a structured questionnaire. Socio-demographic data, comorbidities, functional status measured by the Katz score, self-perceived health status, and life satisfaction were collected. Preferences for end-of-life care and advance care planning were explored using hypothetical scenarios of an advanced illness. Associations between end-of-life care preferences and other variables were determined. Preferences for end-of-life care were compared between the elders and their next of kin.

Results. A total of 153 female and 114 male elders (mean age, 79.2 years) and a total of 128 female and 74 male next of kin were included. Respectively for the elders and next of kin, 87.6% and 88.1% agreed to let 'nature to guide the elder life'; 83.5% and 97% preferred adequate pain control to keep them 'free of pain' despite the side-effect of drowsiness; 65.5% and 43.6% preferred not to use cardiopulmonary resuscitation; 64.8% and 45.1% preferred not to use intubation; 74.9% and 53.9% preferred not to use nasogastric tube feeding; 43.5% and 59.4% preferred'repeated courses of antibiotics for infection despite no improvement noted'; 91.6% and 87.9% preferred small oral feeding (rather than the use of nasogastric tube); and 75.5% and 65.6% preferred oral medications (rather than non-invasive positive pressure ventilation). For advance care planning, respectively for the elders and next of kin, 58.4% and 71.4% preferred the doctor to discuss advance care planning with both the patient and family members; 7.9% and 15.1% preferred the doctor to discuss with family members only; 21.7% and 7.0% preferred the doctor to discuss with the patient only; and 11.6% and 6.5% preferred to let the doctor to make decisions. There were significant discordance between elders and next of kin in terms of treatment preference in case of short of breath (p=0.004) and all end-of-life care preferences, except for 'let nature guide one's life'.

Conclusions. There was significant discordance in end-of-life care preferences between elders and their next of kin. In order to deliver end-of-life care in accordance with elder's values and beliefs, advance care planning should be discussed with them before they become too ill to do so.

Key words: Advance care planning; Aged; Family; Terminal care

INTRODUCTION

A pop song by Lana Del Rey 'We were born to die' highlights two healthcare processes that are relevant to all people: being born and dying. Conventional medical teaching is to prolong life so dying may be viewed as an undesirable outcome or a failure. Nonetheless, death is inevitable despite medical advancements.

In end-of-life care, five important domains have been identified: symptom control, ongoing assessment of quality of life, alleviating burden, strengthening relationships, and discussions about the end-of-life decision-making process.1,2 Advance care planning is a process that allows patients to express their preferences for end-of-life care, and enables their next of kin and healthcare workers to understand their preferences and to make decisions on the patient's behalf when the patient is unable to do so.3 In an observational cohort study, advance care planning was associated with improved quality of care at the end-of-life.4 In a randomised controlled trial, advance care planning improved end-of-life care as well as patient and family satisfaction, and reduced stress, anxiety, and depression in surviving relatives.3 In a cross-sectional study, patients with chronic obstructive pulmonary disease (COPD) who had an end-of-life care discussion with physicians had higher perceived quality of care and satisfaction with the care received.5 In a systematic review, advance care planning demonstrated a positive impact on quality of end-of-life care in terms of increased frequency of out of hospital and out of intensive care unit care, increased compliance with patient end-of-life wishes and satisfaction with care, and absence of adverse effects of advance care planning on psychosocial outcomes.6

In Hong Kong, there is a growing interest in endof life care for terminally ill older adults. Nevertheless, only a few studies have reported end-of-life preferences among Chinese; most such studies have been conducted among elders in nursing homes.7-9 One study presented a hypothetical condition of either a terminal illness or a persistent vegetative state / irreversible coma to 1600 cognitively intact elders in nursing homes.9 Another study reported the attitudes of Hong Kong Chinese elders with chronic disease on life-sustaining treatment in a medical unit of a teaching hospital. Of 219 elders who completed the interview, 209 were community living.10 One study reported end-of-life decision preferences of older Macau Chinese using a quality approach via semi-structured questions.11 The present study aimed to determine advance care planning and end-of-life care preferences of community-dwelling Hong Kong elders with medical problems and their next of kin, and to determine the predictors of their preferences.

METHODS

This cross-sectional study was approved by the Hospital Authority Kowloon Central / Kowloon East Cluster Research Ethics Committee, Kowloon West Cluster Research Ethics Committee, and New Territories West Cluster Research Ethics Committee. Community-dwelling Chinese aged >65 years who attended one of the six medical and geriatric outpatient clinics or geriatric day hospitals between July 2012 and August 2013 were included, as were their next of kin. Elders were excluded if they were living in a residential or care home, were nonChinese, unable to communicate in Cantonese, diagnosed with dementia, refused consent, or had no contactable next of kin. Interview based on a structured questionnaire was conducted face-to-face for patients and in person or by phone for next of kin.

Socio-demographic data, comorbidities, functional status measured by the Katz score,12,13 self-perceived health status, and life satisfaction were collected. Preferences for end-of-life care and advance care planning were explored using hypothetical scenarios of an advanced illness. Scenario exposure has been shown to significantly improve the knowledge level of participants.14 Outcome measures included preferences for advance care planning and end-of-life care, and predictors of these preferences.

Associations between end-of-life care preferences and socio-demographic variables, total hospital stay in the past year, total Katz score, self-perceived health status, life satisfaction, or chronic diseases were determined using the Chi-square test or independent r-test. Preferences for end-of-life care were compared between the elders and their next of kin using the McNemar test. A p value of <0.05 was considered statistically significant.

RESULTS

A total of 153 female and 114 male elders (mean age, 79.2 years) were included (Table i). The five most common comorbidities were hypertension (57.3%), cerebrovascular accident (43.1%), diabetes mellitus (28.5%), congestive heart failure (15.4%), and ischaemic heart disease (14.6%). The mean Katz score for functional status was 4.72. A total of 128 female and 74 male next of kin were included; most were in the age-group of 40 to <60 years (55%) or 60 to <80 years (28%), and were a child (63.7%) or spouse (29.4%) of the elder.

In a hypothetical scenario of an acute life-threatening condition secondary to a terminal disease or advanced illness, preferences for end-of-life care were determined (Table 2). Respectively for the elders and next of kin, 87.6% and 88.1% agreed to let 'nature to guide the elder life'; 83.5% and 97% preferred adequate pain control to keep them 'free of pain' despite the side-effect of drowsiness; 65.5% and 43.6% preferred not to use cardiopulmonary resuscitation (CPR); 64.8% and 45.1% preferred not to use intubation; 74.9% and 53.9% preferred not to use nasogastric tube feeding; and 43.5% and 59.4% preferred 'repeated courses of antibiotics for infection despite no improvement noted'.

In a hypothetical scenario where the elder had advanced dementia and needed major assistance in self-care and could not verbally communicate and ate very little, respectively for the elders and next of kin, 91.6% and 87.9% preferred small oral feeding (rather than the use of nasogastric tube), even if the amount was insufficient to maintain nutrition and health. In a hypothetical scenario where the elder had chronic lung disease and shortness of breath, respectively for the elders and next of kin, 75.5% and 65.6% preferred oral medications (rather than non-invasive positive pressure ventilation) despite the side-effect of drowsiness (Table 3).

In a hypothetical scenario where the elder had an advanced disease but was not acutely ill, respectively for the elders and next of kin, 58.4% and 71.4% preferred the doctor to discuss advance care planning with both the patient and family members; 7.9% and 15.1% preferred the doctor to discuss with family members only; 21.7% and 7.0% preferred the doctor to discuss with the patient only; and 11.6% and 6.5% preferred to let the doctor make decisions (Table 4).

The four possible responses for end-of-life care preferences were dichotomised into 'agree' and 'disagree' for bivariate analysis to determine predictors for end-of-life care preferences in the elders (Table 5). Older age was the predictor for the preference of not to use CPR (p=0.01). Lower Katz score was the predictor for the preference for repeated courses of antibiotic (p=0.043). Higher number of comorbidities was the predictor for the preference for repeated courses of antibiotic (p=0.045). Higher number of acute admissions in the past year was the predictor for the preference against not to use CPR (p=0.039) and not to use nasogastric tube feeding (p=0.006) as well as the preference against 'nature to guide one's life' (p=0.001). Higher number of non-acute admissions was the predictor for the preference against not to use nasogastric tube feeding (p=0.02) as well as the preference against 'nature to guide one's life' (p=0.004).

Discordance in preferences for end-of-life care between the elders and next of kin was determined using the McNemar test (Table 6). Concordance between the elders and next of kin was high in terms of 'let nature guide one's life' (81.2%), 'adequate pain control despite side-effect of drowsiness' (83.2%), and 'feeding preference in advanced dementia' (82%). Concordance between the elders and next of kin was low in terms of use of CPR (54.5%), intubation (49.5%), and nasogastric tube feeding (55.9%). The corresponding discordance in the paired samples of 'elder agreed / next of kin disagreed' were 33.7%, 35.6%, and 33.7%, respectively. Discordance between the paired samples was significant in terms of treatment preference in case of short of breath (p=0.004) and all end-of-life care preferences, except for 'let nature guide one's life'.

DISCUSSION

In our study, 7.9% of elders preferred doctors to discuss advance care planning with family members only. This is in contrast to a study that reported 83% (15 of 18) of participants preferred their family members to make decisions,11 and another study that reported that non-critically ill Asian patients prefer to leave end-of-life decisions to their family members.15 In our study, elders and family members embraced an end-of-life discussion, although'death and dying' has traditionally been a taboo in Chinese culture. It must be emphasised that end-of-life care planning focuses on 'living as much as possible' rather than 'dying'. The quality of end-of-life discussion affects the quality of the dying experience. Information exchange is an integral component of decision making.2 During the information exchange process, it is important to maintain a meaningful sense of hope while preparing both patients and family members for dying.2 In a study of determinants of family's agreement on achieving a good level of hope and preparing for a patient's death in Asian cancer patients and their relatives, the determinants were pacing the explanation according to the family's preparedness, discussing the patient's priorities while the patient was still well enough to participate, willingness to talk about concerns about alternative medicine, maximising the patient's physical ability for daily activities and independence, and setting specific and achievable goals.16

In the 2015 Quality of Death Index, among the 80 countries evaluated, Hong Kong ranked 22nd overall (5th in Asia) and 38th in terms of community engagement. Taiwan ranked sixth overall (1st in Asia). A Taiwan case study reported the importance of community engagement, in particular to break down cultural taboos against discussing death, initiation of changes via education, and introduction of life and death discussions in the education system from primary school to university.17 This aimed to shift the paradigm of filial duty and allow love to be expressed with the family member at the end of life, and encourage acceptance of disease and peaceful passing.17

In clinical practice in Hong Kong, common end-of-life care options include CPR, artificial feeding, and invasive mechanical ventilation. In our study, 65.5% and 64.8% of the elders preferred not to use CPR and mechanical ventilation, respectively, whereas 74.9% preferred not to use artificial feeding. In a study of older people in aged homes, 61.4% of participants did not want life-sustaining treatments or devices and 74.0% would refuse artificial feeding.9 In a study of mostly community-living elders with chronic disease, in the event of a terminal illness, 80% and 81% did not want CPR or artificial ventilation, respectively, and 69% would refuse tube feeding.10 The percentage difference may be partly due to the setting of the interview and the in-patients of an acute medical unit of a regional teaching hospital. In a study of 18 older Chinese interviewed, 14 preferred not to have aggressive medical treatments to prolong life if they were terminally ill.11

In Hong Kong, it is common practice to ask family members to make surrogate decisions when the patient is in a critical condition or coma. In our study, there was significant discordance between the paired samples in most end-of-life care preferences including life-sustaining interventions or devices, artificial feeding, pain management, antibiotic use, and means to relieve shortness of breath in late-stage COPD. Advance care planning can help the patient to clarify their own understanding of illness and treatment options; allow family members and healthcare professionals to understand the patient's values, beliefs, and goals of care; and identify the patient's wishes. It empowers patients to have a say about their current and future treatment. Advance care planning is a means by which to improve patient autonomy, even when he/she loses that capacity, and to assist family members and health care professionals in the provision of end-of-life care treatment in the patient's best interests. A recent systematic review of the consistency of end-of-life preferences over time suggested that patients who engaged in advance care planning or completed an advance directive have more consistent end-of-life preferences.18

In our study, older age was the predictor for the preference for not to use CPR. Higher number of acute admissions in the past year was the predictor for the preference against not to use CPR and nasogastric tube feeding and the preference against 'nature to guide one's life'. One possible explanation is that these elders had higher death anxiety and wanted to defer death. In our study, health status or the number of comorbidities was not associated with end-of-life care preferences. This is similarly reported in one study.19 Older individuals who had experience with end-of-life care of others demonstrated greater readiness to participate in advance care planning.19 Persons who had been hospitalised in the past year were more likely than their counterparts to engage in advance care planning.20

Our study has several limitations. The sample was not stratified and the sample size was small and not representative of the community-dwelling elders with medical problems. Self-rated life satisfaction was not based on a validated quality-of-life instrument. Participants' experience of life-sustaining treatment (eg, tube feeding or repeated course of antibiotics) was not examined; this may have affected their decisions about end-of-life care preferences.

CONCLUSION

There was significant discordance in end-of-life care preferences between elders and their next of kin. In order to deliver end-of-life care in accordance with elder's values and beliefs, advance care planning should be discussed with them before they become too ill to do so.

ACKNOWLEDGMENTS

This study was supported by the Hong Kong Geriatric Society. The authors thank all staff of the participating centres for assistance.

Sidebar

Correspondence to: Mei-Ling Tsang. Email: [email protected]

References

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