Pandemic palliative care: beyond ventilators and saving lives

I read with interest the paper by Arya et al (1), providing a framework for a palliative care pandemic plan. A palliative approach and compassionate care is required more than ever before during this global severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) pandemic.

Patient autonomy and rights to decide what treatment people want diminishes in resource-limited settings, where the emphasis is utilitarianism to offer the greatest good for the greatest number (2). Providing optimal end-of-life care for SARS-CoV-2 patients is difficult, as rapid deterioration in patients limit the time to prepare and communicate bad news. Implemented visitor restrictions also preclude families from spending time with unwell loved ones. This results in complicated grief, with an increased need for psychosocial and bereavement support for families. Complicated grief is associated with the inability to say ‘goodbye’, pre-loss grief symptoms, limited preparation for death and guilt (3), which is highly likely during the pandemic. Disenfranchisement from families may also occur when unable to grieve ‘normally’ with rituals, funerals and availability of social support.

It is crucial to address distressing physical and psychological symptoms, lack of understanding of the disease process and initiate end-of-life discussions. For conditions with an unpredictable course and prognosticating difficulties, palliative care referrals based on complexity of symptoms and patient concerns was shown to improve patient and caregiver outcomes (4). Symptomatic management and empathic communication should be adjunctive treatment, rather than a primary focus on oxygenation or escalating care to ventilator support. There is a need to mitigate grief and allow patients and families to cope through these stressful times (3). Symptom management, psychosocial support and bereavement support are necessary components to provide holistic care to patients (5).

In conclusion, palliative care should be prioritised and integrated as part of the international pandemic response.

In their article on pandemic palliative care, Arya and colleagues offer suggested language for discussing a treatment plan for patients unlikely to survive a critical illness, but whose current treatment plan would include life-sustaining therapies, if indicated (1). I would like to highlight the important skill of making treatment recommendations. Patients and families facing serious illness often feel anxiety in the face of uncertainty. During a pandemic, this anxiety is amplified as patients and families may be physically separated and guidance from government and institutions may change rapidly. Our ability as clinicians to respond empathically, share prognostic concerns, listen to what matters most, and use this information to make treatment recommendations aligned to their goals can garner trust and alleviate distress.

Communication skills training programs are available to assist clinicians to navigate goals-of-care discussions and make treatment recommendations. These programs, which utilize structured guides and teach empathic communication skills, are associated with favorable patient outcomes (2, 3). Importantly, these guides move clinicians away from asking patients what they want (e.g., “Would you want treatment [x] if you got sicker?”), to recommending treatments aligned to patient and family values (e.g., “Based on what I hear you saying, I’d like to make a recommendation that would support you to achieve your goals of [a] and [b]. Is that okay?”). In my experience as a palliative care physician, patients and families expect clinicians to make values-based recommendations and are comforted by not feeling burdened to make “the right decision” themselves.

We are in the midst of a pandemic which has taken every nation with a shocking surprise. When leaders were discussing to fight climate change, global warming and space living life on earth has become a challenge for ordinary citizens to live. Warnings and a clarion call for community health were on the back seat of healthcare system including primary care. Tertiary care hospitals with specialized gadgets abound in the most advanced hospitals. Primary care had a disconnect with many countries and there was a divide between these two. Primary care physician had become a family physician. Medical expenses for every citizen in some countries are linked to medical insurance and social security. The under privileged and sheltered citizens or those living in poor economic conditions are at the mercy of governments to take care of them. Social determinants of health economic status, life style including alcohol, drug and smoking habits and fast food have made people immune compromised. The expansion of geriatric population with good health or with co-morbidities suddenly face a choice of being saved or left on the corridor to die. Death in isolation in intensive care unit leave the patients to die with human indignity. Above all those health care personnel who stand between the virus and victim left with no choice to treat the patient with no mechanical devise to oxygenate or without protective gear to die in the service of patient care. WHO with its guidelines on facing such viral pandemics is still at the mercy of the signatory nations or funding countries. When we man on the moon or possibly on the mars with hightech world Corona Virus with a RNA genome has taught us to live on earth with lock down, social distancing and ill-prepared health care system. Ordinary citizens in such dilemma of scarce resources stands staring at the preamble that Right to Life is Right to Health. Where such a citizen can appeal or ask why nations and WHO have failed to protect him or her exposing them to COVID-19. Justice denied is justice violated.