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Palliative care and Covid-19: A patient’s quality of life and dignified death are paramount

- Desia Colgan, Nicola GunnClark and Emmanuel Kamonyo Sibomana

Calls to permit nurses in South Africa, Kenya and Tanzania to prescribe morphine to help ease patient's suffering and give them a dignified death.

Human beings have a right to live a life with dignity which is free of suffering, pain and stigma, no matter how short their life may be. When it comes to people who are living with a serious condition or illness the question is, how can quality of life be ensured?

The reality is many seriously ill patients, particularly in Africa, struggle with ever-increasing pain, finally dying without relief while immediate carers, often loved ones, stand by helpless and emotionally broken. This suffering is as a result of limited access to oral liquid morphine, a situation exacerbated by the lack of knowledge on how to administer pain-relieving medicine. It is unfortunate that governments overlook the fact that greater access to pain relief and wide training of healthcare workers would mean that, for people who are seriously ill, pain relief, control of symptoms and a good quality of life are possible.  

In southwest Uganda, things are a little different. Patients with advanced illness are served by a palliative care unit at Kitagata Hospital reaching a catchment population of almost 40,000 people in greater Bushenyi District.

Between April and May 2020, when the global Covid-19 crisis struck, hospital services were disrupted worldwide. For the newly established palliative care unit, inpatient palliative care consultations were interrupted, and visits to patients at home severely limited or even discontinued. Appointments were postponed due to the risk of infection, so patients could not come to hospital and could not send family members or carers to collect drug refills.

Mukazi battled breast cancer alone

This is the situation faced by 48-year-old Brigit Mukazi (not her real name), who has advanced breast cancer. 

Mukazi lives in Ntungamo District, which is outside the hospital catchment area. For more than five days she called for pain relief and was cut off from palliative care assistance at the hospital due to the high cost of hiring special transport during Covid because there was no public transport available due to the restrictions. Mukazi was facing the prospect of ever-worsening quality of life with escalating pain, increasing symptoms of her breast cancer and within a few months, the inevitability of a miserable, painful end to her life.  

This situation is the reality for most seriously ill patients in developing countries across the world today. 

What happened to Mukazi? 

To answer this question we have to go back to the years before Covid-19 struck, when the Palliative Care Association Uganda (PCAU) sent a nurse to be trained in palliative care. Once qualified this nurse, Catherine Nakasita, set up the first palliative care unit at Kitagata Hospital. The hospital management provided a double-entry cupboard system for the palliative care unit to store oral morphine, and also allowed Nakasita access to the national medical stores which ensures a continuous supply of morphine and other essential palliative care drugs.

When Covid-19 struck, palliative care unit services were severely disrupted and Nakasita witnessed a crisis of need unfolding. The calls for drug refills, by patients and their carers, fell on deaf ears. When Nakasita contacted the district officials for help, she was told the government only supported pregnant mothers, leaving cancer patients to languish in pain without support. Mukazi was one of these patients (Read “The Right way to say goodbye: Quinton’s Story” (2018) and “Why are we failing to protect the rights of children like Kivumbi?” (2019). 

Nakasita knew there were hundreds more like Mukazi and could not ignore their suffering. She initiated the process by using her personal cellphone and her vehicle, and also contacted bodaboda (motorbike) drivers to deliver drugs to patients and bring critically ill patients to hospital – essential during a severe lockdown.

Collaboration and cooperation meant care continued

Because she knew her funds were insufficient to reach the many patients in need of pain relief and transport, Nakasita wrote to the Palliative Care Association Uganda for further support. She knew there were many children and adults living with cancer who, after chemotherapy, needed follow-up visits to hospital but they lacked the financial means to make the trip.  

Nakasita was aware of this silent suffering hidden away in homes, across many districts, so she raised the alarm. The association recognised her call for help and provided her with the necessary financial assistance to deliver drugs and pay drivers to transport patients to and from hospital. Support from the association and others, such as District Health Authority, meant that the holistic approach to palliative care and access to this service could continue uninterrupted during the pandemic.

It was Nakasita who initially set up the palliative care unit at Kitagata Hospital and who personally travelled five hours to reach Mukazi in a remote area in Ntungamo District, bringing her oral morphine and antibiotics. Without a trained palliative care nurse such as Nakasita, the many patients in Mukazi’s position would have been forgotten.

Nurse prescribes morphine

As a qualified palliative care nurse, Nakasita was allowed to administer morphine in place of a medical practitioner. 

Nakasita is recognised in Uganda as a nurse prescriber because of a progressive law enacted in 2004. A further law was passed, the Narcotic and Psychotic Substance Act 2015, which threatened the role of nurse prescribers in Uganda. However, due to the efforts of a number of key stakeholders and government (read “The right of palliative care for the most vulnerable in Africa is everyone’s responsibility”), nurse prescribing is still recognised today. 

In order for Nakasita to legally access morphine for her patients, she must keep accurate records which justify the further ordering of morphine. In addition Nakasita must send quarterly reports to the National Medical Store (NMS) thus ensuring the collection of data reflecting the needs for pain relief and the response. The NMS gathers and analyses data to establish the true extent of the problem. Through this analysis there is a potential to develop plans tailored to meet local needs of communities.

At a more personal level, Nakasita also cleaned Mukazi ’s wound and offered emotional support to the family, this same support or similar support was provided for 600 more patients and families in the Greater Bushenyi District. Through both the work and the compassion displayed by Nakasita the dignity and rights of patients such as Mukazi are ultimately realised and upheld. 

Palliative care improves quality of life

Palliative care is important because it affords patients pain relief and symptom management, thus improving a patient’s quality of life while still pursuing curative measures. Palliative care not only controls a patient’s distressing symptoms, but also addresses and supports a patient’s emotional, psychological and spiritual needs whilst also offering care for their families.

As a nurse Nakasita found the palliative care training worthwhile because she learned to manage the patients’ pain and other distressing symptoms of a life limiting illness. Previously she thought morphine weakened patients, which is a common misconception shared among many of her fellow health workers. As a result of her training she realised this misconception meant patients were not offered the pain relief they so desperately needed.

In countries such as South Africa, Kenya and Tanzania, nurses are not permitted to prescribe morphine. This can be attributed historically to laws introduced through colonialism which resulted in the criminalisation of opioid use thus impacting the accessibility of pain relief drugs (Read “Decolonizing Health Governance: A Uganda Case Study on the Influence of Political History on Community Participation”). 

These early laws continue to drive suspicion and fear, including many in the medical profession, about the utilisation of opium as a form of pain relief, which denies the right of many to adequate health care and to a dignified end to life. Uganda’s nurse prescribing has shown that with safeguards in place, including secure morphine storage, and adequate record-keeping by nurses, there have been no recorded cases of drug misuse.

Viruses and pathogens will come and go but as human encroachment on the environment, and on wildlife, increases, so too will the frequency of these new diseases. As scientists accept the reality of future pandemics and develop tools to predict these threats, global health experts will have limited time to find innovative remedies to these pandemics of the future. 

This is the time, as leading scientists and innovators scurry to respond to the call for relief, where people with palliative care skills like Nakasita, are a necessity. Health practitioners and carers, with palliative care training, are already in place to provide the necessary and humane care for those many who are suffering.  

Unfortunately, while in the storm of a pandemic, humane and gentle medicine often goes unrecognised and the rights of many patients are undermined. In the haste to stop the spread or cope with increasing numbers of patients, inclusive healthcare is non-existent with many older or seriously ill patients being left to die alone (Read: “Dying Alone Due to Covid-19: Do the Needs of the Many Outweigh the Rights of the Few – or the One?”). 

If palliative care is not included in pandemic preparedness, when the next pandemic rolls around, many more will die in unnecessary suffering, watched over by their helpless traumatised families, who will be scarred forever. Pandemics by their nature cause death but we can at the very least relieve suffering prior to death. Health systems that continue to chase cures for each future pandemic, and continue to ignore palliative care that relieves suffering, do their citizens a huge disservice.

Dr Desia Colgan is a senior law lecturer at the University of Witwatersrand. She oversaw the Wits Street Law programme for over 20 years, working extensively on social justice issues and the rights of children. For the past 14 years she has been involved with palliative care for adults and children. Nicola GunnClark previously worked at the National Hospice Association in South Africa (HPCA) on legal projects including publication of Legal Aspects of Palliative Care (2012) which led to the rollout of law training to hospices, and linked indigent hospice patients & families to pro bono legal help, and later was appointed advocacy officer to HPCA. For six months she worked at the national children’s palliative care network, Patch SA assisting to set up a high-level meeting with government highlighting the need to implement the national policy on palliative care particularly so children’s right to palliative care can be realised, and for palliative care to be integrated into the health system. Her day job is in conveyancing in the United Kingdom. Emmanuel Kamonyo Sibomana is a member of Quebec Bar (Membre du Barreau du Québec) who previously worked as Health Rights Officer for Open Society East Africa. Sibomana is a strong proponent for justice and has been involved, for many years, in supporting strategies that advance the health and human rights of all marginalised people.

The authors would like to acknowledge Catherine Nakasita for her input and feedback during the writing of this article. Without her help this article would not have been possible. For questions on this story please contact the co-authors: Dr Desia Colgan; Nicola GunnClark; Emmanuel Kamonyo Sibomana

This article was first published in Daily Maverick/Maverick Citizen.