Palliative care begins at diagnosis of a life-limiting illness through death and bereavement. It aims to mitigate suffering, be it physical, psychosocial and/or spiritual and empower patients and their families to continue a life of quality and meaning (World Health Organization 2018).
COVID-19 pandemic has changed the way palliative care is provided. The fear from exposure to the virus has prevented many patients from receiving care in hospitals. Care at home had to be modified and unusually impersonalised with personal protective equipment (PPE).
A mother of a 9-year-old boy with cancer at end-of-life was getting more pale and lethargic. She was worried about these symptoms and had hoped there was something that could be done to relieve his suffering. She had thought of bringing him to the hospital but was worried that he may acquire the coronavirus from the hospital. Her son’s hospital was declared a ‘COVID Hospital’. She kept him at home for as long as she could. Finally, she relented and brought him in when he looked too tired. He was seen by the palliative care and oncology team and received blood transfusions. His doctors wondered if he would have been more comfortable receiving the transfusion weeks earlier when he was first symptomatic.
The needs of patients receiving palliative care may be overshadowed by that of patients with COVID-19. For many, travelling to hospital was challenged with roadblocks meant to enforce MCO. Furthermore, the instilled fear of death from COVID-19 when one is already facing death from an illness may cause increased suffering. Self-imposed or health system restrictions may hinder patients from receiving optimal physical, psychosocial and spiritual care. While resources are stretched in a public health emergency, a just healthcare system should still be as equitable as possible (Loewy 1998; World Health Organization 2018; Humanitarian Health Ethics Research Group 2020). Patients without COVID-19 who needed treatment in hospitals should be reassured that their physical and mental health needs will also be attended to. Physicians have a professional duty of care within their institutions to advocate for all patients and ensure that the available local resources are used for maximum benefit for all during this pandemic.
Palliative care promotes good symptom control. During MCO, continued access to medications for all patients should continue. Some hospitals offered home delivery services for medications to ensure patients whose clinic appointments were postponed were not disadvantaged and could continue their medications (University Malaya Medical Centre 2020; Hospital Putrajaya 2020). These were commendable efforts to prevent interruptions to medication supply. However, patients who were on medications that cannot be delivered would be disadvantaged and will have to find alternative measures to continue their medications within the public health restrictions imposed (Astro Awani 2020; The Edge Markets 2020b).
There were patients who needed admissions but who were transferred away from their primary hospital during this pandemic. Patients have a fundamental right to the best attainable healthcare according to the circumstances. These health provision decisions are dynamic and need to maintain a balance between social and individual benefits and harm at all times. This subjective right to palliative care is supported by the Universal Declaration of Human Rights (United Nations 1948) and is part of Universal Health Coverage (United Nations 1990; Knaul et al. 2017). However, implementation of this right should be contingent on availability and equitable distribution of resources. Doctors are duty bound to attempt to maintain as high quality of healthcare as possible even for patients who have to be transferred to another hospital. These steps to transfer patients may not ensure patients receive the highest quality of level of care, but it would have been justified as morally right as these steps protect vulnerable at-risk population from dedicated COVID-19 hospitals, as well as protect the country’s resources for the community’s greatest good. Medical information required for continuity of care should be transferred without breaching confidentiality. Palliative care specialists may not be available in all hospitals for patients who need palliative care. Consults with palliative care providers at referring hospital or from within the healthcare system as well as referrals to written guidance to meet the needs of patients at COVID-19 hospitals will help reduce anxiety in the chaos and uncertainties of COVID-19 pandemic (Tan and Tan 2020).
During the peak of the pandemic, community nurses were deployed to contact screen for COVID-19 in the community. These nurses had to balance the public health needs and individual patient’s need for a home visit. Reduced supply of PPE for home care teams may be a trade-off when prioritising hospital needs (CodeBlue 2020). Ill patients who chose to remain at home or who were physically unable to go to hospitals and carers who could not cope with care at home on their own would have had to yield to return to hospital care.
Patients with serious illnesses who acquire COVID-19 may reach the end of their illness trajectory earlier than expected. This may happen with or without the rationing of ventilators. Acknowledging and respecting their prior decisions for terminal care may prevent non-beneficial burdensome interventions. For patients without advanced care plans, honest conversations on their values and desired care plans should be carried out when deterioration seem most likely to occur. Respect for patient’s autonomy and self-determined goals of care are hallmarks of ethical and palliative care principles. During an outbreak, principles of care should not change; however, standards of care will have to be adjusted to available services and resources. Staff who have these conversations may not have had palliative care training but are in the best position to assist in these life-changing decisions. The decisions may be able to conserve scarce resources and provide patients and families with the most compassionate end-of-life care possible.
Fortunately in Malaysia, our capacity to care for COVID-19 patients has not exceeded the need even for those requiring intensive care (Soo 2020). However, the sacrifice and inconvenience caused to non-COVID-19 patients are not fully documented (Durgahyeni 2020). The ethical argument for prioritising a group of patients during a public health emergency over the other when there are scarce medical resources will need to be balanced with the burden experienced by the disadvantaged group.