Quality of life was achieved in South West Uganda in spite of lockdown:
Introduction
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 uppermost 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 health care workers would mean that, for people who are seriously ill, pain relief, control of symptoms and a good quality of life is possible.
In South West 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 Districts. Between April –May 2020, when the global Covid-19 crisis struck, hospital services were disrupted world-wide. For the newly established palliative care unit, inpatient palliative care consultations were interrupted, and visits to patients at home were severely limited or even discontinued. Appointments were also 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.
Brigit battled breast cancer alone
This is the situation faced by 48 year old Brigit Mukazi (not her real name) who has advanced cancer of the breast. Brigit lives in Ntungamo District of Uganda which is outside the hospital catchment area. For more than 5 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 the time of covid [Due to covid restrictions there was no public transport available]. Brigit 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 Brigit? To answer this question we have to go back to the years before Covid19 struck when the Palliative Care Association Uganda (PCAU) together with Sheema District local government 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 Catherine 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 Catherine witnessed a crisis of need unfolding before her eyes. The calls for drug refills, by patients and their carers, fell on deaf ears. When Catherine contacted the District officials for help, she was told Government only supported pregnant mothers therefore leaving cancer patients to languish in pain without support. Brigit was one of these patients.[1] Catherine knew there were hundreds more like Brigit and could not ignore the suffering of so many. She initiated the process through use of her personal cell phone, 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, Catherine wrote to Palliative Care Association Uganda (PCAU) for further support for the PC unit. She also 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.
Catherine was aware of this silent suffering hidden away in homes, across many districts, so she raised the alarm. PCAU recognised her call for help and provided Catherine with the necessary financial assistance to deliver drugs and pay Bodaboda drivers to transport patients to and from Hospital. Support from PCAU and others, such as District Health Authority, meant that the palliative care holistic approach to care and access to this service was able to continue uninterrupted during the pandemic.
It was Catherine who initially set up the palliative care unit at Kitagata Hospital and who personally travelled 5 hours to reach Brigit in a remote area in Ntungamo District, bringing her oral morphine and antibiotics. Without a trained palliative care nurse such as Catherine the lives of so many patients in Brigit’s position would have been forgotten.
Nurse prescribes morphine
As a qualified palliative care nurse Catherine was allowed to administer morphine for Brigit in place of a medical practitioner. Catherine is recognised in Uganda as a nurse prescriber because of a progressive law enacted in 2004. A further law was passed, Narcotic and Psychotic Substance Act 2015, which threatened the role of nurse prescribers in Uganda however due to efforts of a number of key stakeholders and government, nurse prescribing is still recognised today. [2]
In order for Catherine to legally access morphine for her patients, she must keep accurate records which justify the further ordering of morphine. In addition Catherine 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 are specifically tailored to meet local needs of communities.
At a more personal level Catherine also cleaned Brigit’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 Catherine the dignity and rights of patients such as Brigit 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 pursing curative measures. Palliative care not only controls a patient’s distressing symptoms, but also addresses and supports a patients emotional, psychological and spiritual needs whilst also offering care for their families.
As a nurse Catherine 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. A common misconception shared amongst 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 African countries such as South Africa, Kenya and Tanzania nurse prescribing of morphine is not legal. 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 up to today.[3] These early laws continue to influence an ongoing suspicion and fear, including many in the medical profession, toward the utilisation of opium as a form of pain relief unfortunately denying 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.
Different 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 Catherine, 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, whilst in the storm of a pandemic, humane [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 health care is non-existent with many older or seriously ill patients being left to die alone.[4] 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 for ever. 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
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 desia.colgan@wits.ac.za
NicolaGunnClark gunnclarknicky@gmail.com
Emmanuel Kamonyo Sibomana : healthrightseafrica@gmail.com
[1] ‘The Right way to say goodbye: Quinton’s Story’ (2018) access: https://ehospice.com/inter_childrens_posts/the-right-way-to-say-goodbye-quintons-story/ and ‘Why are we failing to protect the rights of children like Kivumbi?’ (2019) access: https://ehospice.com/inter_childrens_posts/why-are-we-failing-to-protect-the-rights-of-children-like-kivumbi/
[2] Sibomana, E., Colgan, D., & GunnClark, N. (2019). ‘The right of palliative care for the most vulnerable in Africa is everyone’s responsibility’. African Human Rights Law Journal, 19(2), 653-674. https://dx.doi.org/10.17159/1996-2096/2019/v19n2a5
[3] Mulumba M., Ruano AL., Perehudoff K. and Ooms G. (2021). ‘Decolonizing Health Governance: A Uganda Case Study on the Influence of Political History on Community Participation’ Health & Human Rights Volume 23/1, June 2021, pp. 259-271.
[4] Capozzo AV. (2020). ‘Dying Alone Due to COVID-19: Do the Needs of the Many Outweigh the Rights of the Few-or the One?’. Frontiers in public health, 8, 593464. https://doi.org/10.3389/fpubh.2020.593464
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