By Dr Raksha Balbadhur, April 2020
“Kindness, humanity, and respect—the core values of medical professionalism—are too often being overlooked in the time pressured culture of modern health care.” Harvey Chochinov
As the world has been thrown into a state of emergency with the COVID-19 pandemic, scenes never expected before are being witnessed by humanity. Healthcare workers and strategists scramble to generate strategies in keeping with the pace of the novel Corona virus to protect humanity. In South Africa, we learn from the course and trajectory of COVID-19 in the countries that have preceded us in acquiring the infection, but can we prepare adequately considering our socio-economic climate? With our lack of basic amenities like food, shelter, and adequate water supplies for safe hand washing and a high rate of HIV and Tuberculosis, we have to prepare for the worst medically, whilst socioeconomic systems are proceeding to correct these social inequalities. For the minority of those that develop COVID-19, the disease is serious (15%) to life-threatening (5%). However, if the infection rate increases rapidly, this will overwhelm our already burdened and under-resourced healthcare system.
How is palliative care relevant during the Covid pandemic?
Alongside life-saving management, palliative care becomes essential at this time of COVID-19 to support and improve the quality of life of patients (and their families) with serious illness, to alleviate suffering and uphold their dignity through active compassionate interventions until the end-of-life. Palliative care intends not to hasten or prolong death, yet alongside standard care we may improve survival by relieving symptom- and psycho-existential distress. As the community transmission increases in SA, we also have a responsibility to protect our vulnerable palliative care patients with advanced disease in the community who are COVID-19 negative with education and PPEs. Community based palliative care also places the healthcare worker at risk, and an unsupported healthcare worker can offer little support to another.
What does dignity mean?
Dignity is an unconditional inherent worth possessed by ALL living beings – intrinsic dignity.
Dignity is a core value in palliative care. A basic principle of palliative care is to help the patient live and die with dignity, in conjunction with symptom control, and psychosocial and spiritual well-being in order to achieve the goals of optimizing quality of life. Dignity is an unconditional inherent worth possessed by ALL living beings – intrinsic dignity. Yet, there is a labile extrinsic attributed component: how patients view themselves and how they are viewed by others. With COVID-19, people are feeling unsafe and anxiety levels are high and this has affected their sense of worth/esteem. It is this extrinsic component of dignity that fluctuates and needs to be considered. There are a number of practical considerations that can threaten/improve the dignity of patients at this time of COVID-19 and yet there are simple basic compassionate measures that can be implemented to counter these threats.
- Lack of basic human needs such as food, running water, shelter, money, transport to medical facilities and access to basic medication can undermine the dignity of the majority of our patients. The lockdown has bought time for the government to strive to provide such facilities to minimize the extent of the assault of the lack of these amenities on the dignity of South Africans.
- Alongside treatment-focused interventions for those who qualify, the frequent assessment and vigilant management of symptom distress such as fever, breathlessness, anxiety, and pain are vital to maintain the dignity of all categories of patients.
- Availability of medicines (be it enteral or parenteral) to alleviate symptom distress especially opioids and benzodiazepines is essential for the effective provision of dignified palliative care.
- PPEs are also essential to protect our COVID negative patients, and the families caring for COVID positive patients at home. A safe family means a happy patient.
- If our healthcare system is overwhelmed by the COVID-19 disease burden, triage may become necessary to determine who is to receive critical care or supportive care. In palliative medicine, death is considered a normal phase of life. It is how we approach and support the dying patient at this time that becomes paramount. For those patients who are for supportive care, all measures must be taken so that they receive compassionate comfort care, and are free from physical and psycho-existential distress until they die.
- Psychosocial distress is a major factor that diminishes dignity in the dying. Patients are afraid (of death, loss of function, loss of role, abandonment by medical staff and family, symptom distress, concern for loved ones, being a burden on others etc.) and these fears need to be allayed.
- There is the potential danger of the COVID positive patient being stigmatised and disrespected.
- Even in this time of potential chaos and time constraints, psychosocial and spiritual needs should be identified, explored, and honoured to the best of our ability with a supportive empathetic listeneing and referral for counselling.
- Honest, clear, compassionate communication which begins with the Advanced Care Planning (see attached) gives the patient autonomy and grace in dying. This conversation can begin with patients at risk of getting serious illness so their wishes can be respected – this also affords family members peace of mind when critical decisions need to be made.
- COVID-19 poses an added challenge to dignity in palliative care as isolation is mandatory, thus dying patients suffer alone, without the support of touch or the company of their loved ones. This may make them feel more vulnerable as their loved ones are not present to support and advocate for their needs. However may be possible, safe means need to be explored to help families make contact with their dying loved one. No one should suffer and die alone. The innovative use of communication technology (e.g. Whatsapp/Video calling, tablets, Zoom or Skype) can help people maintain contact with loved ones, and thus support their grief and bereavement. They need to say goodbye and bring closure for their peace of mind.
- Knowing that their loved ones are also supported to bring closure can also bring relief to those that are dying.
- Due to social isolation families can experience complicated grief from not being able to support or comfort their loved ones in their last days. It is difficult for them to experience closure. Thus bridging this gap in communication is merciful and it is important to offer best compassionate care to both the patient and the family unit.
- An interdisciplinary approach that includes community counsellors, social workers, psychologists and chaplains are essential to relieve the burden on dignity at the time of COVID
Spiritual Care Considerations:
- Living in our culturally diverse Rainbow Nation, death is an important phase of life and entails many rituals/traditions, customary to the patient’s culture/religion. This is not to be slighted with COVID-19 as it may result in aftermath for the families.
- Hospital and community chaplains and social workers should pay an active role in ensuring there is open honest communication and understanding of relevant family members (especially about the handling of the bodies).
- This spiritual care will build trust and cooperation.
- Families should be supported so that fundamental aspects of traditions that bring meaning are respected whilst maintaining infection control and safety spiritual care.
Care of the Caregiver:
- If symptom distress is not attended to adequately and there is suffering, or with triage and rationing of medical equipment, there can be mental trauma experienced by patients, families/caregivers, and health care providers.
- Caregivers and Healthcare providers need to have support structures in place and need to debrief as compassion fatigue, low morale and dissociation can set it in if not monitored.
- A resilient dignified family caregiver or healthcare worker ensures dignity to the patient.
What do healthcare professionals need to remember?
Healthcare professionals have an influence in the area of the extrinsic sources of dignity listed above, and can enhance the dignity of ALL patients at the time of COVID-19 by providing respectful compassionate care, in attending to all domains of care of patients, thus providing total care – There is never nothing we can do for anyone! Palliative care is active compassionate care!
As Broyard said, the separation of humanity and compassion from healthcare delivery requires that “treatment of disease takes its proper place in the larger problem of care of the patient”, and COVID-19 has made this statement most relevant.