Alina Bharwani
Source: "RE:Union - A story of cancer in the family" by mescon is licensed with CC BY 2.0. To view a copy of this license, visit https://creativecommons.org/licenses/by/2.0/
Introduction
With over 3.5 million deaths worldwide – exceeding the death toll of any pandemic in the past two decades – COVID-19 has undeniably left a drastic and lasting impact on the physical, financial, and psychosocial well-being of people all over the world. One specific vulnerable group suffering from the profound impact of COVID-19 is those who have lost a loved one to the virus, and who are thus at a higher risk for developing mental health disorders compounded by the circumstances of isolation and restricted visitation in healthcare settings.
Background
Palliative care, a branch of medicine aimed at providing holistic care to patients suffering from life-threatening conditions and their caregivers, can help family members transition and recover from the loss of a loved one. The aims of palliative care are to improve the quality of life of both critically-ill patients and their families through reducing physical suffering from symptoms, providing care based on the patient and family’s values and priorities for treatment, as well as providing psychosocial and spiritual support to all parties. Following a patient’s death, palliative care also extends to bereavement support for loved ones.
Usually, end-of-life palliative care relies heavily on the concept of shared-decision making involving patients, family members, and a multidisciplinary team of healthcare professionals. In the context of COVID-19, however, the large surge in patients requiring these services or even basic medical services has often compromised the facilitation of such conversations. Additionally, many patients with COVID-19 present to the hospital acutely, with a rapid deterioration in symptoms requiring urgent medical care. With a shortage of basic medical supplies across many countries, including ventilators or hospital beds, the need for palliative care may be overlooked in the face of more “urgent” threats to physical well-being.
Mental Health Impacts
The death of a loved one has drastic mental health impacts. A population-based study in the US showed that the unexpected death of a loved one led to a significantly increased risk for developing PTSD, anxiety disorders, depression and other mental health conditions. In the study, participants who had unexpectedly lost a loved one often rated this as their worst experience among all other traumatic events they had encountered. In a study of 1374 participants from Saudi Arabia, 55% of participants who had lost a family member to COVID-19 met the cut-off score for PTSD. Furthermore, these mental health impacts are also likely to be long-lasting. For example, in a studyconducted one year after the Ebola epidemic response in Sierra Leone, it was found that 80.7% of participants who had lost someone to Ebola still suffered from PTSD at the time of the survey.
In China, a study conducted after the peak of national COVID-19 cases found that the incidence of prolonged grief disorder was 37.8% in a sample of respondents who had lost a relative within 6 months of the survey. This incidence was higher than that of a sample of bereaved adults in China (12.7%) surveyed 4.5 years prior using the same diagnostic algorithm. Complicated Grief, also referred to prolonged grief/bereavement disorder, is characterised by a prolonged period of severe grieving where an individual has difficulty resuming a sense of normalcy and recovering from loss.
Factors Affecting Bereavement
Due to the widespread implementation of lockdown measures, hospitals and other healthcare facilities have often had to limit or ban visitors. This has had a drastic impacts on patients nearing death as well as their family members. Patients who are nearing death will often die without anyone by their side and will be unable to say goodbye to their loved ones.
One study from Japan found that not being able to say goodbye to a family member before their death increased the risk for developing complicated grief. Other risk factors include having less social support and not having preparationbeforehand. Additionally, a study in China conducted during COVID-19 found that having a closer relationship to the deceased, as well as increased subjective trauma and obstacles in the grieving process also increased the risk of developing prolonged grief disorder.
Another risk factor for distress amongst caregivers is perceived suffering of patients. For example, breathlessness of a patient was found in a study to increase distress amongst family members in the ICU setting. On the other hand, increased emotional support for patients prior to death in the ICU was shown in the same study to decrease distress amongst family members.
A Call for Action
In a narrative account by Columbia University palliative care physician Ana Berlin, she expresses the need for multidisciplinary teams who would be best able to “deploy a full complement of skills and attentiveness” to patients and family members. She also touches on the “Ethics of Care” model developed by Carol Gilligin, where “morality is grounded […] in the cultivation of relationships, upholding of responsibilities, and intensifying of compassion among persons tied together by a common narrative”, an approach which she believes should be applied during the current pandemic.
According to the World Health Organisation (WHO), the palliative care services provided in emergencies “cannot be ‘one-size-fits-all’ and must be sensitive to context and culture”. They suggest that guidance on provision of palliative care must take into account context-specific considerations such as economic factors, as well as cultural and religious factors.
Future Directions
Regarding methods to improve support for those who have lost a loved one to COVID-19, researchers have suggested the implementation of virtual means to provide support to the dying and their families, such as virtual memorials or support groups, or producing memorial videos. Additionally, mental health counselling services which can be provided through telehealth technologies, should be made accessible, with active efforts being made to trace family members of deceased patients in order to evaluate their mental health status and provide support if needed.
Many experts in the field of palliative care also recommend providing basic palliative care training to all medical and nursing students and staff, which can be facilitated through the use of online resources. With this training, frontline medical staff can be equipped with the necessary skills to provide basic palliative care support to patients in settings where specified palliative care physicians are unavailable.
Conclusion
The resulting mental health impacts from COVID-19, highlights the importance of providing multidisciplinary holistic care for dying patients and their loved ones as part of the COVID-19 response both during and post-pandemic. Previous pandemics have also shown us that despite the fact that these mental health impacts may not be as tangible as the physical health impacts of disease, they are certainly prevalent, often long-lasting, and cannot be ignored.
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