Palliative care provides a holistic and comprehensive service that aims to improve the quality of life (QoL) of patients with life-limiting illnesses regardless of prognosis. Patients with advanced heart failure (HF) not only have significant mortality, but also experience debilitating morbidity because of physical, psychosocial, emotional and spiritual issues.
There are several US and European studies that demonstrate significant improvements in the QoL of advanced HF patients after the involvement of palliative care teams. This effect has been demonstrated in various settings, including inpatient, outpatient, primary healthcare and at home.1–5 Even though the evidence for palliative care in HF is robust, in many countries palliative care remains more likely to be delivered earlier in the illness for cancer patients than for non-cancer patients.6 This is reflected in Singapore, where palliative care has been primarily focused on cancer patients, despite the relatively higher prevalence of HF in the country. Up to 4.5% of Singaporeans live with HF as compared to 1–2% in the US and Europe.7,8
Given Singapore’s ageing population and the increasing prevalence of cardiovascular risk factors like hypertension and diabetes, the incidence of HF in Singapore is likely to grow. Recognising the value of palliative care in advanced HF, the 2020 guidelines from the Heart Failure Society (Singapore) advocate for palliative care involvement through early identification and subsequent support of patients with advanced HF.8,9
It is timely and important to understand the challenges of integrating palliative care into the usual care of a HF patient, so as to address these issues and ensure holistic care for all. Given the multiethnic and multicultural society of Singapore, the challenges and experiences identified here would also be applicable to the wider Asia-Pacific region.
Challenges of Integrating Palliative Care in Patients with Advanced Heart Failure
There are four constraints to the timely provision of palliative care to patients with advanced HF.
Cultural Avoidance of End-of-life Conversations
There remains significant cultural avoidance towards conversations pertaining to end-of-life (EOL) care.10 Because of this, patients and their families – and even cardiac specialists – often view the involvement of the palliative care team as defeatist, preferring to defer or even avoid palliative care referrals completely. With this unique cultural overlay, the negative connotation associated with EOL discussions itself presents a barrier to patients and their families receiving the support from the palliative care team.
Difficulty in Identifying Palliative Care Needs and Communicating with Seriously Ill Patients
The acceptability of palliative care in Singapore necessitates that healthcare professionals be equipped with good palliative care knowledge and be advocates for their patients to receive timely interventions to better address the misconceptions or cultural reluctance of palliative approaches. However, the role of palliative care in non-cancer patients is still relatively new. Unlike cancer patients, those with advanced HF experience a non-linear deterioration, punctuated with periods of decompensation and exacerbation in their disease trajectory. Consequently, healthcare professionals have the added difficulty of identifying and prognosticating patients with advanced HF who require palliative care, which in turn limits the clarity that patients have regarding their treatment.11
Systemic Barriers to Palliative Care Use
While there have been recent acknowledgements at the national level of the increasing importance of palliative care in Singapore, current policies may need to be further refined to address systemic barriers to palliative care use.12
Current difficulties include the lack of community resources to support home inotrope infusions, as well as financial considerations for inpatient hospice stays because of limited coverage from private insurers.
Limited Research Into Cultural Appropriateness of Palliative Care Assessment Tools
There is a paucity of research regarding the cultural appropriateness of palliative care tools and interventions in the Asia-Pacific region, and even more so in the Singaporean context. Among the published patient-reported and healthcare-reported screening tools outlined in a systematic review by Ament et al., none have been studied in Asia-Pacific region.13 This limits the ability to identify and subsequently monitor the needs of patients with advanced HF in Singapore.
Addressing the Challenges
Some recommended solutions that could help to address these challenges include the following.
Equipping Healthcare Professionals to Communicate with Seriously Ill HF Patients
A recent pilot study has shown that cardiac specialists find communication training for serious illness conversations acceptable in the local setting.14 Further work can be done to explore implementing serious illness conversation training into the curriculum of specialist training.
Understanding the Needs of Local Patients and Caregivers
Recent studies have been published in identifying the care needs of patients with advanced HF unique to Singapore. One significant area facilitating the introduction of palliative care services to patients with advanced HF is the role of formalised advanced care planning (ACP).
A local study by Malhotra et al. demonstrated that ACP led to short-term improvements in decision making, whereby ACP lowered decisional conflict and facilitated discussion of the patients’ preferences with their caregivers.15 The results suggest that in our local cultural context, such processes could serve as an initial avenue for patients to communicate more effectively with their caregivers about their values and goals of care.
While patients with advanced HF with left ventricular assist devices (LVAD) are a minority, they represent a group who would have undergone a prolonged trial of optimal medical therapy and have had to cope with refractory disease for a much longer time. In addition, with the low rates of heart transplant in Singapore, many bridge-to-transplant recipients have had to live with their LVAD long term. Therefore, the experiences they have and those of their caregivers would be invaluable in identifying care needs in our local context.
Two local studies by Neo et al. investigated the long-term changes across the domains of physical, financial, social, psycho-emotional and spiritual for both patients and their caregivers and identified several significant findings.16,17 From the patient’s perspective, the authors identified the desire of patients to have an integrated and holistic healthcare support system. Through their illness, patients also yearned to have connection with others and society at large. From the caregiver’s perspective, practical stressors identified that could be addressed included the need for more emotional, social and financial support. It was also recognised that pre-existing personal notions and traditional expectations of the caregiving role have affected their own ways of coping with their circumstances. These insights would be invaluable in the development of culturally appropriate palliative care programmes in future.
Piloting Culturally Adapted Palliative Care Interventions and Assessment Tools
The authors have taken steps to culturally adapt palliative care tools that can help in identifying and tracking needs of local patients with HF, such as the Integrated Palliative Care Outcome Scale (IPOS), which was first developed in the UK. The IPOS is a brief tool that screens heart failure patients for symptoms and concerns. The IPOS was culturally adapted and validated at the National Heart Centre Singapore, for use for local heart failure patients.
A novel, nurse-led supportive care model in the US is the ENABLE CHF-PC programme, which demonstrated that advanced HF patients had improved pain intensity and reduced pain interference with daily life after 16 weeks.18 In line with the Singapore Ministry of Health’s 2020 healthcare strategy of ‘Beyond Hospital to Community’ and ‘Beyond Healthcare to Health’, a culturally adapted version of ENABLE CHF-PC is currently being planned in Singapore (ENABLE-HF-SG; NCT05211882) to investigate the cultural acceptability, feasibility and effectiveness of the programme locally, with the aim of enabling patients to continue living well in the community.
In our local context, more work can be done in identifying appropriate screening tools for directing timely referrals and monitoring needs, evaluating acceptability and effectiveness of palliative care interventions, and supporting cardiac specialists in providing basic palliative care for advanced HF patients. Cardiac specialists can, in turn, help shape patient, caregiver and societal perceptions regarding the acceptability and utility of palliative care interventions. The evaluation of the long-term effects of implementing palliative care interventions into routine care of HF patients and its cost effectiveness should also be examined in future.
Being a relatively new field, the landscape of palliative care in advanced HF in Singapore is a growing and promising area of development that would impact patient care locally, and potentially in the wider Asia-Pacific region as well.