Integrating palliative care
How palliative care helped Uganda’s seriously ill children when the Covid-19 pandemic struck
A Ugandan nurse’s care of a very ill four-year-old boy is a case study in how home-based, locally tailored care could transform public health systems.
Microsoft co-founder and billionaire philanthropist Bill Gates said in a Ted talk in 2015 that the world was not ready for the next epidemic: “If anything kills over 10,000 people in the next few decades it’s most likely to be a highly infectious virus rather than a war, not missiles but microbes.” He went on to later recommend that a billion-dollar-a-year pandemic task force be formed by the World Health Organization (WHO).
On 24 May 2014, member states of the WHO met for the 67th World Health Assembly and passed Resolution 67.19, urging national governments to develop, strengthen and implement palliative care policies within the continuum of care.
Unfortunately, we now know that the world was neither prepared for a pandemic nor had it strengthened or implemented palliative care policies.
We argue that implementing palliative care and adopting a home- and community-based approach could have made a difference to millions of people around the world during the pandemic. An innovative feature of palliative care is that, with adequate support from trained palliative care doctors, nurses and community health workers, much of its service is provided in the patient’s own home.
Palliative care in pandemics
“Palliative care is an important component of the medical response to pandemics and other health emergencies. The principles of palliative care do not change, but the practice of palliative care has to change as a result of factors, such as greater demand and infection control measures,” Andrew Davies, a consultant at the Royal Surrey County Hospital in Guildford in the UK, says in an article published by the National Library of Medicine in 2020.
At a global level, Covid-19 struck heavy and fast. With limited time for planning, countries, governments and institutions were forced to respond to an unknown and virulent attack. The resulting confusion and uncertainty meant that children and adults already living with a serious illness were directly and indirectly affected by the pressure placed on healthcare resources. It was apparent that for all health systems, the effect of a fast-moving disease was crippling, but in under-resourced regions of the world, the impact was felt even harder.
Africa’s persistent challenges with poverty, inequality and inadequate public healthcare systems exposed already vulnerable communities to greater risk of infection. Because of these distinct circumstances, any pandemic response would need to take into consideration the environment and lived experiences of people.
More recently, gaps identified in pandemic plans have “spurred a number of innovations and adaptations to the coronavirus response in Africa – initiatives that continue to unfold”, according to an article published in 2020 by the Africa Center for Strategic Studies, an academic institution in the US Department of Defense.
Covid’s rapid spread resulted in a worldwide, knee-jerk reaction, indicating limited foresight into ways of effectively containing and controlling the pandemic’s spread. This failure to respond and contain the spread of the virus introduced an influx of highly contagious individuals into hospitals, which created a heightened spread in these institutions and affected the ongoing care of pre-existing, seriously ill patients.
As an example of a successful alternative approach, we would like to present the story of Catherine Nakasita, a Ugandan nurse trained in palliative care. It demonstrates the well-recognised, people-centred approach of palliative care, which adopts a home-based and community care model, and is tailored to local needs. Such an approach may better serve to monitor and contain the spread of infection among infected and unaffected individuals.
When the pandemic struck, the total lockdown crisis in April 2020 in Uganda, as in the rest of the world, saw admissions to palliative care units drop by 50%. Staff struggled to carry out in-patient consultations and provide access to medicines, while patients, in turn, postponed appointments and home visits dropped off.
Before the pandemic, Kitagata Hospital in the Sheema district of Uganda set up a palliative care unit where Nakasita was the lead nurse. She had been working at the hospital for a period of time, during which she carried out home visits and was responsible for supporting community health workers who cared for patients in their home. These workers would alert Nakasita to the changing needs of patients in their communities.
Nakasita and her community health workers built a vital link between communities and the formal health system, which is particularly important during a pandemic when health systems face huge disruptions and stress.
During the upheaval, Nakasita learnt about a four-year old boy who had arrived at Kitagata Hospital in severe pain. The boy, Benji*, had a temperature of 40°C and a cancerous, foul-smelling ear, which was leaking pus and attracting flies. His distressed mother struggled without support from Benji’s father, who had evicted both mother and son from the family home. In desperation, without financial means or food, Benji’s mother carried her son on her back to Kitagata Hospital, 13km away.
Nakasita treated Benji for three days with antibiotics and painkillers, including morphine. She then transferred him to Mbarara Regional Referral Hospital for chemotherapy. She also provided his mother with emotional and psychological support.
Impact on seriously ill children
At both Mbarara and Kitagata hospitals, medical practitioners said that Benji’s situation reflected the hidden reality of many seriously ill children in communities where access to necessary care and treatment (chemotherapy) was limited or restricted by the introduction of severe Covid-related lockdowns.
The transport situation had been further compromised as special authorisation was needed for any travel. Finding the resident district commissioner to get authorisation was beyond the financial means of most families. Most public health institutions lacked the resources to be of assistance.
In environments seriously challenged by issues of poverty and limited resources, addressing the impact of a virulent pandemic depends on the surrounding circumstances and available resources.
Nakasita adopted an approach that reflected the accumulated knowledge of her patients and her experience, and used her existing network of support. She customised her approach to adapt to the realities of the pandemic situation. By calling on her established palliative care network and training, she raised funds for transport from the Palliative Care Association of Uganda (PACU), which assists patients in accessing specialist treatment. The patient’s pathway to treatment and care was further facilitated through negotiating the waiver of hospital fees. In implementing a patient-centred approach to the diagnosis and care of potential cancer patients, Nakasita, together with PCAU and the medical superintendent at Kitagata Hospital, was able to ease access to care for many patients.
Nakasita is also a nurse prescriber and, as such, she is allowed to prescribe, dispense and administer opioid analgesics in homes and in hospitals. In Uganda, a progressive legal framework recognises the right of registered palliative care nurses to prescribe and administer scheduled medicines.
One important feature of Nakasita’s practice — and of other nurse prescribers in Uganda — is the necessity for keeping updated and accurate data on large numbers of patients (more than 400). Long before the pandemic struck, Nakasita and others in southwest Uganda were responsible for gathering, sharing and updating data on their patients, their conditions, treatments and health needs. This is because routine patient data has to be collected to validate the continued prescribing, administration and distribution of scheduled medicines, such as morphine and other opioids.
Nonetheless, despite Nakasita doing a remarkable job in alleviating the suffering of many seriously ill children like Benji, her approach is not sustainable on its own. It must be adopted widely and institutionalised to ensure that more children and regions are included.
To be sustainable, healthcare systems must be transformed, adopting an approach where policies and action plans, including financing, account for the diversity of individual and community health needs.
This calls for a horizontal approach where collaboration and buy-in includes multiple players from government and civil society as well as the private sector and an empowered community. It includes consideration of human resources, training and education, the availability of medicines as well as collaboration with international stakeholders, such as Unicef.
Is this sustainable?
Palliative care is everyone’s responsibility.
If it is planned from within health policy transformation and there is political buy-in, this sustainable approach is possible. To embed palliative care within the health system, in a sustainable way, it should be implemented gradually and incrementally, and take into consideration the capacity of countries to implement it. It requires the support of the international community, with donors and international agencies being mindful to call for routine data collection over time to measure improvement.
Unfortunately, palliative care is not prioritised in pandemic planning — in spite of the day-to-day needs of patients, the affected families as well as of healthcare workers and society.
Without policies that mandate and then implement palliative care services, even in times of need, it is unlikely that palliative care will become widely accessible or sustainable. DM/MC
*Not his real name.
Desia Colgan is a senior law lecturer at the University of Witwatersrand. Nicola GunnClark previously worked at the National Hospice Association in South Africa on legal projects. Emmanuel Kamonyo Sibomana is a member of the Quebec Bar (Membre du Barreau du Québec) who previously worked as health rights officer for Open Society East Africa.
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