Background HOlistic Care for the MEdically Advanced (HOME) provides home-based palliative care to patients with end-stage organ failure in Singapore. Advance care planning (ACP) serves as a platform for patients to share their care preferences, particularly with their caregivers. Many people prefer to pass away at home, but many factors affect how this can be fulfilled.
Aim This descriptive study aims to explore the challenges faced by patients and their caregivers in end-of-life care and identify reasons for patients not having their preferred place of death fulfilled.
Methods Patients admitted to HOME from 1st January to 31st December 2014 and who had passed away were studied. Medical, nursing and psychosocial issues recorded during the terminal phase were obtained from the patients’ case notes.
Results A third of patients who indicated a preference to pass on at home did not have that wish fulfilled. An overwhelmingly dominant cause identified was the family’s perception of their ability to cope.
Discussion In the terminal phase of organ failure, disease symptoms and care needs often increased exponentially. Despite the clinical and psychosocial support availed through HOME, some families were still not able to cope physically and emotionally. This could be confounded by the family’s understanding about the disease, interpersonal relationships and individual coping skills, which amounted to caregiver burden and could trigger burnout/breakdown.
Conclusion Terminal care for patients involves more than clinical support. The family’s perception of their ability to cope is a significant contributor to fulfilling a patient’s dying wishes.
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