The African palliative outcome scale

ageing in africa

Grade your pain from 0 to 5, grade your other symptoms from 0 to 5, indeed if you can, how worried are you about your illness from 0 to 5…

This may seem like a rudimentary measure of a person’s experiences of a life-limiting illness, but its the best measure we have. Produced in 1999 by Irene Higginson of the Cicely Saunders Institute the Palliative care outcome scale (POS) has since been validated across 11 sites in 8 African countries. It is a useful tool, but is really just the start by enabling us to try to measure the problem. I was shocked by a study conducted at Mulago Hospital, Kampala which showed a 46% prevalence of active life-limiting disease when they conducted a census of medical notes, and a high level of need for palliative care across all domains of need as assessed by the African POS (physical, psycho-social…

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The African palliative outcome scale

Grade your pain from 0 to 5, grade your other symptoms from 0 to 5, indeed if you can, how worried are you about your illness from 0 to 5…

This may seem like a rudimentary measure of a person’s experiences of a life-limiting illness, but its the best measure we have. Produced in 1999 by Irene Higginson of the Cicely Saunders Institute the Palliative care outcome scale (POS) has since been validated across 11 sites in 8 African countries. It is a useful tool, but is really just the start by enabling us to try to measure the problem. I was shocked by a study conducted at Mulago Hospital, Kampala which showed a 46% prevalence of active life-limiting disease when they conducted a census of medical notes, and a high level of need for palliative care across all domains of need as assessed by the African POS (physical, psycho-social and spiritual). But this should not surprise me; on the ward of a different East African hospital today is an elderly gentleman with a fungating tongue cancer. He sits with it hanging out of his mouth, holding his tongue with a cloth as it slowly oozes blood. Damu. He is very low saying he feels hopeless and has been “thinking too much” about the future and his two children. There is time to think in hospital given that he’s not sleeping. This is because his Tramadol was initially given as a 5 day course, and stopped. He has not been getting any analgesia for over a week now.

I would love to reproduce this study here, because I know (and fear) that the need for palliative care is high as defined by the authors as an active life-limiting illness and “unresolved physical symptoms psycho-social or spiritual need as defined by the patient”. As it happened, a sister to sister chat ensued and it was decided that social welfare aught to be involved. They would also request that the Tramadol be re-started.

Provision of palliative care for life-limiting disease in a low income country national hospital setting: how much is needed? Jane Lewington, Elizabeth Namukwaya, Julie Limoges, Mhoira Leng, Richard Harding. BMJ Supportive & Palliative Care 2012;2:140–144. doi:10.1136/142 bmjspcare-2011-000188

The case for making integrative palliative care part of the sustainable development goals­­­­-from an African perspective.

During a recent placement in Tanzania where I was working in a tertiary referral Hospital I was powerfully struck by the need for palliative care in Sub-Saharan Africa. I saw many die, and many die from conditions which were not reversible or curable-in this or any setting:  An elderly, frail Maasai tribesman was admitted in acute urinary retention, with delirium likely secondary to urinary sepsis. He was catheterised and initiated on antibiotics, but was daily appearing more frail and ill. Incidentally, a pathological fracture of his humerus was discovered upon moving the patient. His chest xray revealed-as we had suspected- multiple bony and lung metastases, this was a case of late-presenting metastatic prostate cancer.

The doctors informed his relatives, two tall enrobed, bejewelled sons who waited attentively at their father’s bedside. They quickly came to the decision that they would take their father home to care for him there, knowing that in fact they would be taking their father home to die. This would no doubt involve hours of journeying with their father lying in the back of a truck in the intense heat and eye-stinging dust. And to a journey’s end with little relief from suffering, certainly with no professional support or medicines to relieve his symptoms.

This case raises so many issues which are relevant to the current debate around the inclusion of palliative care in the upcoming UN Sustainable Development Goals (SDGs):

The SDGs are due to replace the Millennium development goals (MDGs) which have been the focus for aid and development and for governments when setting healthcare priorities since 2000. Of the draft SDGs proposed, the third pertains to healthcare and will shape the discourse and health and development priorities until 2030[i]. Although palliative care was omitted from the MDGs substantial gains have been made in the advancement of palliative care, particularly in Africa [ii] where there are now four countries with palliative care integrated into either their health or their cancer strategic plans and five where palliative care is included in the curricula of health workers [iii].

However there is still huge unmet demand. Unfortunately this infirm Maasai gentleman is not alone in facing his end-of-life without palliative care, despite the best efforts of his family. Indeed it is estimated that he is one of around 19 million adults in need of palliative care at the end of life, the greatest majority (78%) being adults of low or middle income countries [iv]. The African region- the Worldwide palliative care alliance (WPCA) discuss in their report- has thus far been dominated by the need for palliation of HIV/AIDS and this has been the focus of much donor support for projects such as CHAT (The Continuum of Care for People Living with HIV/AIDS in Tanzania) for example. But there is also a significant requirement for palliative care for non-communicable diseases for example cancers (19.6%)[v]. Indeed worldwide, the burden of malignant diseases is projected to increase from 14.1 million cases in 2012 to 21.6 million by 2030, with huge increases of 60–70% predicted in Latin America, Asia, and Africa[vi] and this alongside a growing burden of non-malignant chronic conditions such as dementia. However, one could argue that the real tragedy of this case is his late presentation. That resources should be spent improving access to screening, diagnostics and effective treatments, is of course imperative. But without integrating palliative care into developing healthcare systems, we are losing sight of a basic human right [vii].

There are many unique challenges to reaching populations such as the tribe’s people of northern Tanzania who hold different, beliefs, values and gender roles to our own. It is crucial that the British model of the “hospice movement”, as founded by Dame Cicely Saunders is adapted with sensitivity, as described by the APCA[viii] . This patient had many wives, and numbers of children in the tens, all of whom revered him; as an elder in the Maasai patriarchy would expect. To see him this frail and powerless must have been a difficult experience for them and was probably magnified by the unfamiliar setting of a busy medical ward. What struck me strongly in this case was the family’s assumption that there was no more that western medicine could offer him; that as dutiful sons their only option was to make the painful journey home to nurse him. The challenge then is how to raise expectations and educate about palliative care and what it can offer, then to integrate it into services as part of true universal health coverage. As the World Health assembly describe, there is a moral imperative on us:

“Acknowledging that palliative care is an ethical responsibility of health systems, and that it is the ethical duty of health care professionals to alleviate pain and suffering, whether physical, psychosocial or spiritual, irrespective of whether the disease or condition can be cured, and that end-of-life care for individuals is among the critical components of palliative care”[ix]

Including palliative care explicitly as a key component in the UN sustainable development goals is crucial in helping to meet this challenge. The authors have identified these two SDG sub-targets (3.8 and 3.9b)[x] as relevant to palliative care, and call for the role of palliative care to be explicitly included[xi].  At the point of further inter-governmental funding discussions in July this year, they ask that an emphasis on access to essential analgesia and palliative medicines (as listed by the WHO in the 18th edition of essential medicines[xii]) is encompassed by these sub-targets. This is particularly relevant to the integration of palliative care in the African continent due to the logistical challenges posed by low urbanisation. APCA support a move towards task-shifting with community prescribers being used to increase access to analgesia in rural areas[xiii]. Without including palliative care in the SDGs it will be very difficult to achieve what has been called the “glaring pain divide” where access to analgesia remains disproportionately in favour of high income countries[xiv].

This argument rests on our understanding and interpretation of “universal health coverage” and “essential medicines”. If the SDGs are to be meaningful and lead to a wider and more equitable attainment of health and improved quality of life- until the point of death – then let us call for palliative care to be named as a necessary component of “universal health coverage”, the goal for the next era of health development.

[i] Powell, Richard A et al., ‘Putting Palliative Care on the Global Health Agenda’, The Lancet Oncology, 16 (2015), 131–33.

[ii] Worldwide palliative care alliance, Global Atlas of Palliative Care at the End of Life (WHO, January 2014) <http://www.eapcnet.eu/LinkClick.aspx?fileticket=zdT-uqg5EJo%3D&tabid=38&gt; [accessed 2 March 2015].

[iii] African palliative care association, ‘Integration- Introduction’ <http://www.africanpalliativecare.org/integration/introduction/&gt; [accessed 2 March 2015].

[iv] Worldwide palliative care alliance.

[v] Worldwide palliative care alliance.

[vi] Edited by Peter Boyle and Bernard Levin, ‘IARC Publications World Cancer Report 2008’, 2014 <http://www.iarc.fr/en/publications/pdfs-online/wcr/2008/wcr_2008_3.pdf&gt; [accessed 3 March 2015].

[vii] ‘Letter to the UN General Assembly Open Working Group 12 on Sustainable Development Goals ahead of the 12th Session’ (Human rights watch, 2014) <http://www.hrw.org/news/2014/06/20/letter-un-general-assembly-open-working-group-12-sustainable-development-goals-ahead&gt; [accessed 2 March 2015].

[viii] African palliative care association, ‘Integration- Introduction’.

[ix] World Health Assembly, ‘Sixty-Seventh World Health Assembly’, in Strengthening of palliative care as a component of comprehensive care throughout the life course, 2014 <http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R19-en.pdf.&gt; [accessed 2 March 2015].

[x] United Nations Department of Economic and Social Affairs, ‘Open Working Group Proposal for Sustainable Development Goals’ (United Nations Department of Economic and Social Affairs) <https://sustainabledevelopment.un.org/content/documents/1579SDGs%20Proposal.pdf&gt; [accessed 3 March 2015].

[xi] Powell, Richard A et al.

[xii] WHO, ‘WHO Model List of Essential Medicines 18th List’ (WHO, 2013) <http://www.who.int/medicines/publications/essentialmedicines/en/&gt; [accessed 2 March 2015].

[xiii] African palliative care association, ‘Accessibility to Essential Palliative Care Medicines’, African Palliative Care Association-Reflieving pain and suffering <http://africanpalliativecare.org/integration/access-to-essential-pc-medicines/&gt; [accessed 3 March 2015].

[xiv] Harvard Global equity initiative, ‘Harvard Global Equity Initiative. Closing the Pain Divide.’ <http://hgei.harvard.edu/icb/icb.do?keyword=k62597&pageid=icb.page662285.&gt; [accessed 2 March 2015].

The scarred face of Epilepsy. What is it like to grow old with Epilepsy in Sub Saharan Africa?

I met a woman in her seventies who had suffered frequent epileptic seizures for several decades. She told me her story; married with three children she worked selling fried fish at a roadside stall. When the seizures started she sustained burns to her right side and arm after fitting and falling into her barbequing fish. Her life became one of rejection and stigma. Her husband abandoned her she told me, wincing. Her children have moved away, and she thinks they are scared to be near her now.

Her keloid scars are thick and matted like the roots of trees weaving across the left side of her face, neck and chest. Her right arm is contracted with scarring and muscle wasting and useless like a broken bird’s wing. She has found employment as a housemaid but is often unable to work due to a shooting pain “like lightening” caused by nerve damage.

Allowing a chameleon to breathe into your nostrils, the shadow of a crow flying over you as a baby, the curse of a jealous friend and evil spirits are some beliefs held about the causes of epilepsy in Tanzania (1).

Sadly this woman’s story is not unusual either; it is common to suffer burns which provide a permanent reminder of the stigma and exclusion from work and family life. The authors conclude that a community based education and treatment programme is needed, especially one involving the informal health sectors, for it is to the religious and traditional healers that people with epilepsy frequently turn first. Meanwhile her Christian faith is clearly a great comfort to her, “Namuomba Mungu” (I pray to God), “Pole sana” (I’m very sorry) I say inadequately.

(1).  Socialcultural aspects of epilepsy in Kilimanjaro Region, Tanzania: Knowledge and

experience among patients and carers. Epilepsy and Behaviour 20 (2011) 338-343

D. Mushi, E. Hunter, C. Mtuya, G. Mshana, E. Aris, R. Walker

A WHO backed “Global Dementia Observatory”

Fantastic to hear that a large conference in Geneva has brought attention to the global issue of Dementia.

The WHO has committed to fund a “Global Dementia Observatory” to monitor the prevalence of Dementia and to support member countries in their planning and implementation of country-specific dementia policies.

I can’t help feeling though that the emphasis has been too much on that of finding a “treatment”, with the UK health secretary announcing a pre-clinical research fund for innovative research into halting the progression of this horrible and life-limiting illness. Of course investing in this area is much needed and has long been neglected but what about the challenge of caring for people with this progressive illness now, and in low and middle income countries where the rise in prevalence is predicted to grow fastest.

New and novel drugs take decades to go from lab-based research to the pharmacy shelves. Even longer to become patent-free and available to the African continent at affordable prices. So I meet this news with a sceptical optimism, so glad that dementia has been acknowledged on the global health agenda, but concerned that investment is being directed away from those countries with the highest and most urgent need.

The work of Alzheimer’s Disease International sounds extremely exciting however with its emphasis on improving quality of life and community involvement. I am excited to learn more.

Mission statement

With this blog I want to explore palliative care and public health, aging and elderly care in Africa.

I want to reflect on the challenges of how to demonstrate the humanity of humans through our healthcare systems. How can we enable people to live (well) until death and give dignity to the elderly even when resources are few?

Most of us are afraid of ageing in some way. Even now in my twenties I am counting my few grey hairs, mortified. But this is more than a simple vanity or denial that we all harbour. I think we are terrified of that place between living and death where we may become vulnerable and dependent on others. So I want to tackle this taboo in the manner of exposure therapy for the phobic: Bravely.

With caution and sensitivity also. But, boldly, I want to tell the views and stories of people on the continent alongside discussion of the wider public health policies and systems of their countries.

In order to keep patient details confidential and avoid inadvertent disclosures I will keep locations, hospitals and clinics anonymous as well as people. This blog will be representative of my thoughts and opinions only and I welcome any thoughtful debate or comments. Thanks for reading.