Background: A systematic understanding of socio-economic inequalities in end-of-life (EOL) suffering among advanced cancer patients is required to inform efforts to reduce these inequalities as part of Universal Health Coverage goals.
Aims: To assess inequalities in multiple domains of EOL suffering among advanced cancer patients – physical, functional, psychological, social, and spiritual –, using two socio-economic status (SES) indicators, education and perceived economic status of the household.
Methods: We used cross-sectional data from surveys of stage IV cancer patients (n = 1378) from seven hospitals across five countries (China, Sri Lanka, India, Vietnam and Myanmar). We conducted separate multivariable linear regression models for each EOL suffering domain. We also tested interactions between the two SES indicators and between each SES indicator and patient age.
Results: Patients living in low economic status households /with fewer years of education reported greater suffering in several domains. We also found significant interaction effects between economic status of the household and years of education for all EOL suffering outcomes. Age significantly moderated the association between economic status of the household and social suffering and between years of education and psychological, social, and spiritual suffering (p < 0.05 for all).
Conclusion: Results highlight that SES inequalities in EOL suffering vary depending on the suffering domain, the SES indicator assessed, and by patient age. Greater palliative care resources for patients with low SES may help reduce these inequalities.
Background: Access to palliative care services is essential for attaining universal health coverage for patients with a terminal cancer. Despite this, many patients with advanced cancer in low-income countries, such as Myanmar, suffer at the end of life (EOL) due to little or no access to palliative care. However, actual evidence on EOL experiences of cancer patients in Myanmar is lacking. This paper aims to describe various dimensions of EOL experiences among patients with an advanced cancer from the largest public hospital in Myanmar.
Methods: We surveyed 195 patients with stage IV cancer seeking care from outpatient oncology clinics to assess their quality of life, pain severity, pain medications taken, quality of communication with doctors, nursing care and health care coordination, and desire to end life sooner. We assessed socioeconomic status (SES) differences in each patient outcome using separate multivariate linear/logistic regressions.
Results: Forty-one percent of the patients in our sample reported that they wish their life would end sooner. Low SES cancer patients had significantly worse quality of life, reported poor health care coordination and were more likely to report severe pain compared to high SES cancer patients visiting the same hospital.
Conclusion: To improve quality of life and pain management and to reduce EOL distress among patients with advanced cancer, there is a pressing need to develop and invest in hospital and community-level palliative care services in Myanmar.
BACKGROUND: Efforts to improve quality of end-of-life (EOL) care are increasingly focused on eliciting patients' EOL preference through advance care planning (ACP). However, if patients' EOL preference changes over time and their ACP documents are not updated, these documents may no longer be valid at the time EOL decisions are made.
OBJECTIVES: To assess extent and correlates of changes in stated preference for aggressive EOL care over time.
DESIGN: Secondary analysis of data from a randomized controlled trial of a formal ACP program versus usual care in Singapore.
PATIENTS: Two hundred eighty-two patients with heart failure (HF) and New York Heart Association Classification III and IV symptoms were recruited and interviewed every 4 months for up to 2 years to assess their preference for EOL care. Analytic sample included 200 patients interviewed at least twice.
RESULTS: Nearly two thirds (64%) of patients changed their preferred type of EOL care at least once. Proportion of patients changing their stated preference for type of EOL care increased with time and the change was not unidirectional. Patients who understood their prognosis correctly were less likely to change their preference from non-aggressive to aggressive EOL care (OR 0.66, p value 0.07) or to prefer aggressive EOL care (OR 0.53; p value 0.001). On the other hand, patient-surrogate discussion of care preference was associated with a higher likelihood of change in patient preference from aggressive to non-aggressive EOL care (OR 1.83; p value 0.03).
CONCLUSION: The study provides evidence of instability in HF patients' stated EOL care preference. This undermines the value of an ACP document recorded months before EOL decisions are made unless a strategy exists for easily updating this preference.
Background: There is no evidence on effectiveness of Advance care planning (ACP) among heart failure (HF) patients. We examined the effect of an ACP program in facilitating EOL care consistent with HF patients’ preferences (primary aim), and on their decisional conflict, discussion with surrogates, illness understanding, anxiety, depression and quality of life (secondary aims).
Methods: We randomized 282 HF patients to receive ACP (n=93) or usual care (control arm, n=189). Primary outcomes were assessed among deceased (n=89) and secondary outcomes from baseline and 6 follow-ups conducted every 4 months.
Results: Deceased patients in ACP arm were no more likely than those in control arm to have wishes followed for EOL treatments (ACP: 35%, Control: 44%; p=0.47), or place of death (ACP: 52%, Control: 51%; p-value=1.00). A higher proportion in ACP arm had wishes followed for cardiopulmonary resuscitation (ACP: 83%, Control: 62%; p=0.12). At first follow-up, ACP patients had lower decisional conflict (ß=-10.8, p <0.01) and were more likely to discuss preferences with surrogates (ß=1.3, p=0.04). ACP did not influence other outcomes.
Conclusion: This trial did not confirm that our ACP program was effective in facilitating EOL care consistent with their preferences. The program led to short-term improvements in the decision-making.
BACKGROUND: Family caregivers of patients with advanced cancer have been reported to provide long hours of care and be at risk for poor psychological outcomes. Although research has focused on the nature of caregiving burden, little attention has been paid to identifying protective factors that improve caregiver psychological outcomes.
AIM: We examined the relationship between caregivers' time spent caregiving and the following psychological outcomes: anxiety, depression and caregiving esteem. Subsequently, we explored the main and moderating effects of caregiver-perceived self-competency and sense of meaning on caregiver psychological outcomes.
DESIGN/PARTICIPANTS: Cross-sectional analysis was conducted using the baseline data from an ongoing cohort study. Family caregivers of advanced cancer patients (n=287) were recruited from two tertiary hospitals in Singapore.
RESULTS: Time spent caregiving was not significantly associated with caregiver anxiety, depression or caregiving esteem. However, significant main effects of self-competency on anxiety and caregiving esteem; and sense of meaning on anxiety, depression and caregiving esteem were observed. Moderator analyses further indicated that self-competency attenuated the positive relationship between time spent caregiving and anxiety, while sense of meaning attenuated the negative relationship between time spent caregiving and caregiving esteem.
CONCLUSION: Greater perceived self-competency and sense of meaning are related to better caregiver psychological outcomes, and protect caregivers from worsening outcomes as caregiving hours increase. Our findings suggest that screening caregivers for distress is an important part of care, and that supportive interventions for caregivers should aim to enhance their perceived caregiving competencies and the ability to make meaning of their caregiving role.
Background: The Universal Health Coverage goals call for access to affordable palliative care to reduce inequities in “total pain” and suffering. To achieve this, a patient-centred understanding of these inequities is required.
Aim: To assess association of total pain and suffering (i.e. physical, psychological, social, and spiritual health outcomes) and perceived health care quality with financial difficulties among stage IV solid malignancy patients.
Design: Using baseline data from the COMPASS cohort study, we assessed total pain and suffering including physical (physical and functional well-being, pain, symptom burden), psychological (anxiety, depression, emotional well-being), social (social well-being), and spiritual (spiritual well-being, hope) outcomes and perceived health care quality (physician communication, nursing care, and coordination/responsiveness). Financial difficulties were scored by assessing patient perception of the extent to which their resources were meeting expenses for their treatments, daily living, and other obligations. We used multivariable linear/logistic regression to test association between financial difficulties and each patient-reported outcome.
Setting/participants: Six hundred stage IV solid malignancy patients in Singapore.
Results: Thirty-five percent reported difficulty in meeting expenses. A higher financial difficulties score was associated with worse physical, psychological, social, spiritual outcomes, and lower perceived quality of health care coordination and responsiveness (i.e. greater total pain and suffering) (all p < 0.05). These associations persisted after adjustment for socio-economic indicators.
Conclusion: Results identify advanced cancer patients with financial difficulties to be a vulnerable group with greater reported total pain and suffering. A holistic patient-centred approach to care at end-of-life may help meet goals for Universal Health Coverage.
CONTEXT: Advance care planning has been shown to improve end-of-life care but it was developed in the USA and most research has been conducted in western communities.
OBJECTIVES: We aimed to study the attitudes and perceptions of patients with life-limiting illnesses, informal caregivers, doctors, nurses and medical social workers regarding advance care planning in a multi-cultural family-centric community.
METHODS: We conducted an explorative qualitative study, using focus groups and individual in-depth interviews. We used purposive sampling techniques to recruit 61 adults (15 doctors, 13 nurses, 5 medical social workers, 15 patients and 13 caregivers) from multiple healthcare settings across the country.
RESULTS: The participants are genuinely anxious about the implementation of advance care planning. They had positive and negative expectations of advance care planning. Many were confused about the legal framework for healthcare decision-making and expected advance care planning to be of limited value because family members, rather than the patient, were usually the key decision-makers.
CONCLUSION: A nuanced approach to advance care planning which considers the family network is required in multi-cultural family centric communities. Policies should be reconciled to create a more consistent message that respects patients, the family, and is legally coherent. Further research could focus on adaptations of advance care planning to promote its acceptance in such communities.
BACKGROUND: Advanced cancer significantly impacts quality of life of patients and families as they cope with symptom burden, treatment decision-making, uncertainty and costs of treatment. In Singapore, information about the experiences of advanced cancer patients and families and the financial cost they incur for end-of-life care is lacking. Understanding of this information is needed to inform practice and policy to ensure continuity and affordability of care at the end of life. The primary objectives of the Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS) cohort study are to describe changes in quality of life and to quantify healthcare utilization and costs of patients with advanced cancer at the end of life. Secondary objectives are to investigate patient and caregiver preferences for diagnostic and prognostic information, preferences for end-of-life care, caregiver burden and perceived quality of care and to explore how these change as illness progresses and finally to measure bereavement adjustment. The purpose of this paper is to present the COMPASS protocol in order to promote scientific transparency.
METHODS: This cohort study recruits advanced cancer patients (n = 600) from outpatient medical oncology clinics at two public tertiary healthcare institutions in Singapore. Patients and their primary informal caregiver are surveyed every 3 months until patients’ death; caregivers are followed until 6 months post patient death. Patient medical and billing records are obtained and merged with patient survey data. The treating medical oncologists of participating patients are surveyed to obtain their beliefs regarding care delivery for the patient.
DISCUSSION: The study will allow combination of self-report, medical, and cost data from various sources to present a comprehensive picture of the end-of-life experience of advanced cancer patients in a unique Asian setting. This study is responsive to Singapore's National Strategy for Palliative Care which aims to identify opportunities to meet the growing need for high quality care for Singapore's aging population. Results will also be of interest to policy makers and researchers beyond Singapore who are interested to understand and improve the end-of-life experience of cancer patients.
TRIAL REGISTRATION: NCT02850640 (Prospectively registered on June 9, 2016).