Tag Archives: palliative care

September 10, 2014 · 1:35 pm

Why I will be running for the African Palliative Care Association

APCA_logo final_NEW STRAPIt is important to state from the start, I don’t like running and nor am I any good at it. You would be right then to comment that it seems just a smidgen odd to decide to run 21 kilometres, out of my own free will, however good a cause it is for.

Well let me assure you that it is for an exceptionally good cause. I am fundraising for the African Palliative Care Association (APCA). APCA has been my employer now for the last 18 months. I am not too proud to say though that when I started working for them I knew little about palliative care – let alone palliative care in Africa.

I guess I was a little naive but I never expected the raw reality that I was met with on day one of my job. Literally millions of people suffering the most debilitating of pain because they don’t even have access to basic elements of palliative care such as access to pain medication.

I started to grasp the magnitude of what this actually meant when I went with staff from Hospice Africa Uganda on home visits. I met patients and their family who benefited from having access to oral morphine and who had grappled back a sense of normality in their life.

I remember meeting Bruno on the outskirts of Kampala. I remember how he had said to me that “You cannot be happy to see your dad suffering”. But most of all, I remember how deeply sincere he was when he thanked the hospice staff for coming, for caring and for bringing his monthly does or oral morphine.

This realisation though of how important palliative care services are only truly sunk in when I met someone who, like most Ugandans, did not have access to this service.

That person asked me not to publish her name and I can understand why. She spent 6 months nursing her mother who died of cancer as the rest of the family refused to let her seek medical help because of the financial implications. She watched her mother everyday lie in bed unable to move because of the pain she was in. With tears in her eyes she said to me one of the most powerful sentences that I have ever heard: “When I die, I don’t want to go like that.”

This is what APCA campaigns for. To ensure that no-one in Africa dies without access to palliative care.

Over the last 18 months of working for APCA I have almost every day had a realisation of some sort. Sometimes it is still about how dire the situation is in many parts of Africa. Other times it is about these faceless numbers impact on people lives. But increasingly these realisations come through meeting the varied and wonderful volunteers and staff who working to change all this.

Because of a small band of committed people there are now policies, projects and pain killers popping up all over Africa. The staff and volunteers I have met have at times humbled me but more often than not, they have inspired me.

In South Africa the national association is supporting the training of traditional healers in palliative care. In Uganda they have been training journalists and editors. In Zambia they are engaging the HIV AIDS community. All people who used to see themselves as separate to palliative care all now working to ensure everyone has access to these services.

When the palliative care community reaches out – others cannot help but to respond seeking out what they can do, how they can contribute to helping to end this perfectly preventable humanitarian disaster of untreated pain.

It is a natural response that I too felt.

But what can I, as a non-medical professional, contribute? And that’s when it struck me that even if I was already over stretched professionally, I could always do something that anyone of us could do…run a half marathon to raise money and awareness for APCA’s work.

And so, not only do I want you, if you can afford to, donate to APCA through my ‘Just Giving’ page. I would also love you to help me raise awareness of palliative care in Africa. Can you share this article on facebook, visit APCA’s website, or share this video?

Together I know we can do this – there are already hundreds of talented wonderful people out there doing the most amazing work. It might not be obvious how you can help but believe me, just by reading this article you have taken your first step.

There is a long-way to go and my half-marathon is really just the first few steps but together we can make a real difference.

You don’t have to believe me, just go and listen to patients both with and without access to palliative care and you will soon see the difference it can make.

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July 30, 2014 · 7:15 am

Children in war zones – how do we respond?

I co-authored an article for the International Children’s edition of ehospice looking at the impact that war has on children and what the response should be from the palliative care community. I thought I would share it here as it explores some interesting subjects around how the medical community responds to disasters…

“Jon Snow of Channel 4 news appeals to everyone to raise their voices against the war raging in Gaza and talks about the adverse effect this war is having on children and young people. This article asks what the palliative care response should be to the increasing death toll of children in war zones around the world.

In recent days reports have emerged from Gaza of the growing child death rate and the devastating impact this is having on families, friends and the community in the Gaza strip. One such report was that of Channel 4’s Jon Snow. His impassioned account of what he has witnessed during his recent trip to Gaza makes for difficult viewing.

At times clearly moved by what he has experienced, Snow reports on the impact that the bombing is having on children saying:

“Those people who live in Gaza are young. The average age is 17. That means that a quarter of a million is under the age of 10 years,”

He goes on to explain that when a densely populated area such as that of Gaza is targeted, it is inevitable that some of the civilians killed will be children. In the most recent upsurge of violence Snow’s report estimates that 1310 children have been wounded and 166 killed, with these numbers rising every day.

The long-term and short impact this is having on children and their families is almost impossible to quantify.

It is of course not just in Gaza that children are suffering.

From Ukraine to Syria, from the Central African Republic to South Sudan we are increasingly seeing how children are being affected by war. Not only in the death statistics but also through the exposure to the brutality of war we can see the devastating impact on children’s lives that will be felt for a generation to come.

The palliative care response
“How do we respond as a palliative care community to these distressing reports?” asks Joan Marston, CEO of the International Children’s Palliative Care Network. “Where there is so much suffering, what are we as the “experts” on death and dying doing to help those in regions that are difficult to reach; and how do we provide and justify palliative care when there are so many other conflicting needs that must be met?”….

Read the full article on ehospice. 

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June 26, 2014 · 10:29 am

A visit to Mulago Hospital in Kampala, Uganda

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As we enter the long corridor a strip light overhead flickers for a final few seconds before finally joining some of the other lights in the corridor that have long since given up and now do little more than collect dust. The few remaining lights throw strange long shadows down the corridor next to the wheeled beds that rest head to toe along the side of the corridor. It reminds me of the Kampala traffic jam that stacks up outside the hospital in the choking city heat.

No natural light makes it into the corridor but somehow the faint smell of congested traffic makes it up onto the third floor of Mulago Hospital to intermingle with the smell of humans and disinfectant. Avoiding the few harsh strip lights that still work, patients lie either in the shadow of their own headboards or with their thin sheets pulled over their heads.

As I walk down the corridor I step carefully over the relatives, water bottles, half eaten meals and other day to day items that are dotted across the floor. The patients rely on relatives for not just company but also for a lot of the day to day care they need. The smell as you pass some patients makes it abundantly clear that some patients are not receiving the care they need.

I glance sideways making small talk with my eyes to some of the patients whilst trying to keep moving on and keeping up with the representative of Hospice Africa Uganda who I am shadowing. Dressed in the dark blue shirt with a golden collar that marks her out as a member of the palliative care team my host takes large confident strides that exposes her familiarity with the surroundings.  She doesn’t look down as she steps over brothers, books and broken bits and pieces. Instead she angles her thick note book that she is carrying towards the strip light above and looks over notes of the patients she is there to visit.

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We push through some thick wooden swing doors on our left into a room that has one of the young patient we are there to visit as well half a dozen others. The patient we are visiting has terminal cancer and relies on the visits of the Hospice Africa team to bring oral morphine to help her with the considerable pain she would otherwise be in. My host from Hospice Africa Uganda goes straight to her bedside and lowers herself and her voice as she makes confident but kind eye contact with the patient. Speaking in the local language, Luganda, my host subconsciously runs her fingers over the shoulder of the patient as she speaks.

I am told that they ask how bad the patient’s pain is and decide that the current level of morphine is suitable. The sister of the patient, herself barely out of her teenage years, looks on with the juxtaposition of her own youth intermingled with the inevitable death that rests so close to her own, and her family’s, life. Looking as though she is unsure of her role in the nurse/patient dynamic that plays out in front of her the sister reconciles her position by just being physically close to her sister. Both protective and supportive she leans on the bed side throughout the consultation.

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Selfishly my thoughts drift as the Luganda speech drifts around me. I start to think about how if I was diagnosed with terminal cancer I would want to be free, bathed in natural light and surrounded by fresh air not stuck in a overcrowded hospital. Almost immediately I catch myself and realise how ridiculous this thought is – all across Uganda there are patients who are dying of cancer in natural sunlight, surrounded by fresh air with their families who are also in insufferable pain because they have no access to the medical support they need. The pain medication, oral morphine, which the hospice team was there to deliver is little more than an aspiration to most cancer patients in Uganda – let alone early diagnosis and treatment.

Just before we leave, a colleague from the US organisation ‘Treat the Pain’ asks if the patient would like a Polaroid picture with her sister. For the first time a flicker of excitement crosses the patient’s face and she shuffles a symbolic couple of centimetres up the bed for the photo. Together the two sisters sit with their heads pressed together watching as their own images slowly appears in the Polaroid picture.

As we stand to leave we collect up our belongings leaving nothing but the sister, the patient and the Polaroid picture behind.

Speaking later when we are far away from the cluttered dark corridors of Mulago I talk to my colleague from Treat the Pain and we both reflect on how the photo felt like a symbol of how little we could offer as non-medical staff in such situations. The stories we write, the advocacy we engage in, and people we interact with will hopefully change the lives of many more patients to come, but for that one girl and her sister we could offer nothing more than a Polaroid picture – it felt useless.

I know in both my heart and mind that it is important to record stories, to take down testimonies, to photograph suffering. I know it, but sometimes it is hard to feel it in the intensity of the personal suffering you have barged in on, especially when you can offer so little in return.

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Click to enlarge the photos.

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June 10, 2014 · 9:58 am

4 year old who featured in Channel 4 documentary on palliative care has passed away

I have today written for ehospice about 4 year old Abdurahmane who featured on Channel 4’s ‘Unreported World’ documentary who has sadly passed away just a few days after the powerful documentary was shown. Like so many that heard his story I am really sad to have heard this news. I am writing now to encourage you to watch this Channel 4 documentary that looks at access to basic pain medications in Senegal.

Abdurahmane has passed away but I hope his death, as his life was, might be part of what brings about the change so desperately needed in many countries around the world – by no means just Senegal! 

unreported world

This is what I wrote for ehospice:

The life of 4 year old Abdurahmane touched the lives of millions. Abdurahmane had retinal cancer and featured on Channel 4’s ‘Unreported World’ documentary looking at shortages of pain medications across Africa and specifically in Abdurahmane’s home of Senegal.

At the time of filming the documentary he had been in the hospital for three months, receiving chemotherapy, which had shrunk the tumour in his eye.

Abdurahmane had also been one of the few people in Senegal to receive morphine to control the pain he was in. The documentary explained that when stocks are low, the hospital pharmacy gives children priority to the morphine. Sadly though, even in this specialist unit the stocks of morphine sometimes run out.

Human Rights Watch last year highlighted that the authorities in Senegal allow only a very small amount of morphine into the country each year. It is thought they import as little as just one kg, enough to treat about 200 cancer patients when there is demand for tens of thousands of patients in severe pain.

It was through the story of Abdurahmane though that this problem was highlighted to the millions of viewers around the world who would have by now watched the documentary.

It was with great sadness then that a few days after the programme first being shown we learnt of Abdurahmane death.

The award winning journalist Krishnan Guru-Murthy who met Abdurahmane and built up a relationship with him broke the sad news on twitter saying:

“Very sorry to say that 4 year old abdourahmane who we filmed about morphine shortages has died”

The impact that Abdurahmane had on the viewers was immediately obvious in the string of responses from memebers of the public.

It is hoped that Abdurahmane life and death will continue to inspire and will drive the change in Senegal that is so desperately needed.

More information:

You can watch the documentary for a limited period on the Channel 4 On Demand facility by clicking here.

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May 29, 2014 · 7:56 am

Channel 4 looks at Africa’s scandalous shortage of pain medications

“without the political will to change, vulnerable people remain deprived of humane treatment and an end to life free of pain.” 

This is the conclusion of the Channel 4 documentary, ‘Africa’s Drug Scandal’ that I helped to coordinate through my work – the African Palliative Care Association. The documentary is due to be broadcast on Channel 4 in the UK at 7:35pm on Friday 30th May 2014.

I am posting about it here because it strikes me as a rare opportunity to get a large number of people thinking about an issue that is incredibly important to me.

The documentary focuses in on the issue of access to pain medications – predominantly oral morphine. Having access to such medication is something that most people in the UK take for granted. If you were diagnosed with a life-threatening illness tomorrow you would assume that you would be given the appropriate pain control that would firstly enable you to live your life to the full but secondly, would enable you to die a peaceful death.

For the majority of people in the world this is simply not the case. Indeed, as ehospice reported last November, due to a lack of access to inexpensive and effective essential opioids more than 4 billion people, over half the world population, live in countries where regulatory barriers leave cancer patients suffering excruciating pain.

In countries like Senegal where the documentary is set the situation is dire. Last October Human Rights Watch found that the government only imports about one kilogram of morphine each year – enough to treat about 200 cancer patients when there is an estimated need in the tens of thousands of patients!

And so, this is one of the corner stones of my organisations work – to lobby, offer training, educate and empower people to ensure that everyone has access to the pain medications they need.

unreported world

It might seem like an abstract issue, but as Krishnan Guru-Murthy, the renowned Channel 4 reporter finds out, once you see a patient suffering in unbearable but perfectly treatable pain you instantly understand the importance of the issue.

Guru-Murthy concludes the situation amounts to “needless cruelty”.

I find it impossible to see how anyone, when faced with this reality could conclude anything different.

The programme can be watched live online here, on 4OD for 30 days after broadcast here, and you can read a preview in the Radio Times here.

Let me know what you think of it in the comments below.

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May 21, 2014 · 1:55 pm

An atheist’s reflection on a prayer meeting

As a de-facto atheist people often assume that I might be troubled by being asked to attend or even take part in religious events. This is rarely the case and indeed I often find the opposite to be true. 

Today I attended a joint prayer meeting for palliative care practitioners from across Uganda who wanted to pray for the palliative care resolution that is currently going through the World Health Assembly. At the meeting I was asked as a representative of my work to read out a short prayer asking God to offer the decision makers wisdom and compassion.

Not only did I not mind this but in fact I found the whole event a real pleasure to attend. Let me explain why.

To start there was a wonderful feeling of unity at the meeting. This sense of ‘unity’ is what I chose to highlight when I wrote it up for ehospice news. It was also what I tried to capture in some of my photographs.

*Click to enlarge*

It was wonderful to watch how different organisations came together in a moment to share a common aim – the furthering of palliative care. It also got me thinking about the potential that faith has to break down hierarchy.

Uganda is incredibly hierarchical as a culture but in this short meeting the focus on the presumed ultimate leader (‘god’) broke down the created hierarchy.

It was both interesting and inspiring to watch.

So even being a hardened (and let’s be honest, argumentative) ‘de facto atheist’ I have to admit to finding this event not only a pleasure to attend but also pragmatically useful.

It brought people together in a powerful and profound way.

In my work, often with NGOs, I often stumble across stupid and badly thought out ideas. Some of them stem from a religious perspective but many don’t.

For as long as a religious meeting or belief system passes J.S Mill’s principle of harm test I cannot see any reason not to let people get on with it. And, in cases like today’s meeting, I cannot see any reason not to positively celebrate it.

Today’s prayer meeting not only passed J.S Mill’s ‘harm principle’ test with considerable ease, but it also I felt contributed something quite profound to the common good – a chance for colleagues and strangers to come together on an equal footing and to focus on what they have in common opposed to their differences.

 

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April 7, 2014 · 1:34 pm

Watch the first of the Al Jazeera series on access to medical morphine

aljazeera011613I occasionally link here bits of my work with the African Palliative Care Association that I think could be interesting to a wider audience.

Here is a short Al Jazeera report on access to morphine in Uganda that I helped coordinate. It serves as a nice introduction to the subject that leaves millions suffering from perfectly preventable pain.

The film was shown on repeat last week. On Thursday they had our Executive Director, Dr Emmanuel Luyirika, on to speak about the subject. You can watch the interview here:

In Uganda, a regional leader in terms of medical morphine availability, only one in ten people who need medical morphine have access to it!

For more information:

Help out:

At the moment millions of Africans suffer terrible pain because they don’t have access to really basic pain medication that many people in Europe take for granted. If you feel like I do that no-one should be left to die in pain then please consider:

 

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March 3, 2014 · 10:04 am

An inspiring start to the week

Totally humbled. That’s how I felt this Monday morning. Reading, editing and publishing the story of Moses Byomuhangi after a weekend of partying and rock climbing has inspired me to be back in the office working for a palliative care organisation.  

After a weekend of having a lot of fun I made my way back into the office of the African Palliative Care Association where I work. I was feeling a bit ‘Monday morning’ when I started to work on an article submitted by a recent graduate, Moses Byomuhangi.

I would really encourage you to read Moses’ story.

Reading his account was a really inspiring start to my week. It left me feeling not only humbled but also inspired to keep working for the roll out of palliative care. It reminded me just why it is so important to communicate palliative care to a wider audience: because no one should have to experience what Moses’ parents did and no 15 year old should have to watch their parents die in pain.

There was so much of Moses story that took my breath away. I cannot even begin to imagine how hard it would have been for Moses, at the age of just 15, to watch his parents die in pain.

At the age of 15 I was playing football and drinking cans of beer in the local park with mates. To this day I have not experienced such a level of responsibility that Moses experienced at the age of 15. I am not sure how I would cope with being the primary care giver if my parents fell ill. If I had that responsibility at 15, I am not sure if I would have coped at all.

This is, at least in part, because growing up in the UK I was sheltered from suffering. If someone was dying or in extreme pain I would (we would?) take it for granted that they would be prescribed strong pain killers. They would almost certainly go to hospital for medical attention.

As a result, the prospect of watching (let alone caring for) a loved one in their dying moments suffer excruciating pain simply does not occur. In the age old British adage, ‘it doesn’t bear thinking about’.

It is worth reflecting though quite how unusual this is though. It is thought that about 90% of those who are in need of palliative care around the world do not receive it. In fact Australia, Canada, New Zealand, US and parts of Europe account for over 90% of the global consumption of opioid analgesics (strong pain medications).

In short, Moses’ parent’s reality of dying in pain is the crushing, devastating and completely avoidable reality for the majority. My British experience of being sheltered from such suffering leaves me in the absolute global minority.

But it is not the suffering that Moses has experienced that left me feeling so humbled and inspired. It was the fact that he used this suffering as catalyst to work so incredibly hard to work towards such an admirable goal – the relieving of suffering of others.

I hope that I can take on just a little bit of Moses’s passion, dedication and spirit in my work.

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January 27, 2014 · 10:22 am

On genocide, palliative care and enduring hope

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One of the many reasons I love my current job is because of the amazing people I get to interact with on a daily basis.

When working in palliative care you meet people who are being pushed both physically and emotionally and it never ceases to amaze me how people respond to these challenges with humour, courage and most of all, hope. This is true for both patients and medical practitioners.

Today I feel really honoured to have received an article from Dr Christian Ntizimira from Rwanda that marks International Holocaust Memorial Day by looking at the challenges to providing palliative care in a post genocide society.

If you accept my observation that death can push people in conventional circumstances to their limits both emotionally and physically then it is a small step to observe that genocide has the potential to rip both people and society to shreds.

But what sets Dr Christian’s article apart is not the description of how people’s lives were ripped apart and how millions were killed of displaced but how, in the aftermath of such suffering, Dr Christian has chosen to draw out a narrative of hope and courage.

If I was to draw one thing from this last year of working for the African Palliative Care Association – and more generally with palliative care practitioners – it is this optimism in the face of adversity.

Whatever happens, however bad, palliative care offers a simple framework to be able to help. I have seen this in the care patients receive right up to their last breath and Dr Christian powerfully illustrates this point in his article on genocide and palliative care.

You can read Dr Christian’s article visiting ehospice by clicking here >>>

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December 10, 2013 · 1:54 pm

Integrating palliative care into international human rights mechanisms

To mark World Human Rights Day (10th December) I wrote this article for ehospice about the importance of integrating palliative care into international human rights mechanisms. 

logo_460x88As we celebrate Human Rights Day we should take a moment to reflect on the millions of people around the world who are suffering from excruciating but ultimately preventable and manageable pain because states have not set up systems that meet and respect their basic right to health – their right to palliative care!

Palliative care is defined by the World Health Organisation as: “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”

Human rights and palliative care are in many ways natural partners. Both are based around the dignity of the individual being applied universally and without discrimination. But they also overlap. Not only is palliative care a human right in itself, it also allows for the fulfilment of other rights.

Without good palliative care, people can become imprisoned in their own homes. Trapped by the burden of disease symptoms including pain making them incapable of accessing education, health, transport or other basic elements of life that most of us take for granted. These are elements of life that we all have a right to.

Read the full article here >>>

 

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November 1, 2013 · 2:34 pm

Human Rights Watch intervenes in Russia drug trafficking case


Last June I wrote in Liberal Conspiracy about the shocking case of Dr. Khorinyak who had been convicted of drug trafficking offences after prescribing basic pain medications to a friend who had muscular dystrophy since childhood, was unable to walk, and was diagnosed with cancer in 2007.

I am delighted therefore to read in ehospice that HRW has now written to the Prosecutor General of the Russian Federation, Yury Yakovlevich Chayka. In their letter, HRW makes a clear legal and moral case for why the Russian authorities should drop these ludicrous charges against Dr. Khorinyak. The letter states:

“Our research has found that regulations on medical use of controlled substances in Russia are overly bureaucratic and excessively onerous, interfering with proper prescribing and with the ability of patients to access these medications. A report detailing these findings is forthcoming. Russia has among the strictest drug control regulations in the world, going far beyond what is required under international law. Russia not only strictly regulates morphine and other drugs in its class but also tramadol, a significantly weaker opioid that is not a controlled substance internationally.

Under international law, countries have an obligation to regulate the availability and accessibility of strong opioid medications, such as morphine, to prevent its misuse and diversion. However, drug control efforts must be continually balanced against the responsibility to ensure opioid availability for medical purposes, in line with the right to health under international law.”

It continues:

“While Dr. Khorinyak and Mrs. Tabarintseva may have violated the letter of Russia’s drug control regulations, they did so out of humanitarian considerations to help a patient with a legitimate medical need, who was deprived access to medications for arbitrary, bureaucratic reasons. As a medical professional, Dr. Khorinyak felt duty bound to help Mr. Sechin, and her actions essentially did no more than seek to end a situation in which Mr. Sechin’s rights were being violated. The prosecution presented no evidence whatsoever that Dr. Khorinyak and Mrs. Tabarintseva personally benefited from prescribing and buying tramadol for Mr. Sechin, that any of the medication was used for non-medical purposes, or was diverted to the black market. We therefore consider the prosecution and conviction to be disproportionate and in violation of international human rights law.”

Human Rights Watch intervention in this case is welcomed. Hopefully the prosecutor will take their advice and drop these disproportionate charges.

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October 30, 2013 · 12:59 pm

From San Francisco to Namibia – Father Rick Bauer on spirituality in palliative care

This article was originally published on the Africa edition of ehospice. 


“I’m a Catholic Priest. I did my seminary from 81-85. The seminary was in San Francisco. I entered it just wanting to be a country priest, and then HIV hit and it changed my life. It changed my understanding of church and what church could be. I knew nothing about palliative care and all of a sudden I was surrounded by people who were dying.”

Sitting in the warm afternoon sun, Father Rick Bauer relaxed back into his chair. It was clear that he was used to explaining how he was taken from his home in the US to travel across sub-Saharan African, driven by palliative care and a desire to limit human suffering. Very quickly it became clear that his early years as a priest in San Francisco were formative for him in developing his interest in spirituality as a part of good palliative care provision.

“So in the earliest days of the pandemic it was pastoral care, the doctors were saying there was nothing more we could do. Nurses would be leaving trays of food outside the rooms of the guys refusing to go in.”

His words were clearly carefully chosen – balanced between wanting to portray the reality of what he and others had felt at the time whilst clearly conscious of how common rhetoric around HIV and AIDS  had moved on since the 1980s.

“I mean…we were scared, I am not judging them. But it was up to us to carry these trays in, you know? Others didn’t want to be in there, but for me I saw no choice. There were guys needing help. People ask me if I was scared and I just think it was holy stupidity. I just saw a tray of food and a hungry guy. I don’t know, I guess yeah, I was scared.”

Father Bauer is now a specialist in spirituality in palliative care and is in Johannesburg, South Africa where he is taking part in a workshop on spirituality at the joint African Palliative Care Association and Hospice Palliative Care Association of South Africa 2013 Conference. Having spent much of his working life in different parts of sub-Saharan Africa, he now lives in Namibia where he continues to work with spirituality and palliative care.

“I spent 15 years managing HIV care and support organisations, first in Tanzania and now in Namibia. But now I am doing lots of things…one of which is teaching in palliative care and how to integrate spirituality into palliative care.”

Spirituality is included, alongside physical and psychological care, as an integral part of the WHO definition of palliative care. Despite this, it is often confused or misunderstood as just looking after the religious needs of a patient.

Father Bauer, however, was insistent that good spiritual care did not necessarily involve religion but rather that it depended upon each individual patient’s needs. Once again, he referenced his early experience with HIV patients in San Francisco to illustrate this point.

“When HIV first hit, the first thing to come up was good counselling practice. We are talking about active listening for example. I don’t think people have to be ordained or anything to provide spiritual care, but at times this can be useful. When someone is dying they have questions. You’re not there to answer them but to listen.”

The difference between psycho-social support that a patient needs and the spiritual support a patient needs is often blurred. Father Bauer offered a simple distinction for practitioners to consider when interacting with patients.

“The ‘Psycho-’ is about myself – for example, if I have been diagnosed with cancer what are my worries or concerns? The ‘social’ is how this then relates to my family my friends. The spiritual care is about helping to ask some of those deeper questions.”

It is common, as people approach the end of life, that they have questions and concerns about deeper, spiritual questions about what, if anything, happens after death. Father Bauer is insistent in pointing out that often patients have a deep spiritual need to also look back and reflect on their lives and what they have achieved.

“There is a growing emphasis on forgiveness. Social workers are seeing it’s important and this is such as spiritual concept. I can train someone on how to give an apology or even accept an apology – that’s a social thing. The spiritual thing is how to really forgive someone, or to forgive yourself. Again though, this is just about being there 100%, to be with a patient to listen to their concerns.”

Spiritual care, in one sense, is a simple amalgamation of soft skills such as active listening. Done well however, it also involves an in-depth knowledge of different cultural and religious factors to understand the specific need each patient.

“Not everyone will be trained in spiritual care, but everyone can listen in a way that puts the patient at ease. Just be there for them,” said Father Bauer.

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October 23, 2013 · 10:01 am

Millions in Africa do not have access to morphine and suffer unnecessary preventable pain

This article was originally published on Left Foot Forward, Britain’s No 1 left-wing blog. 

Palliative care

Palliation – literally, the removing of symptoms of life-limiting illnesses such as pain – has been brought sharply into focus in Africa due to the dual burden of an ageing population and an increased disease burden.

To give just one example, 70 per cent of people living with HIV worldwide live inside sub-Saharan Africa, a region which constitutes only 12 per cent of the global population.

Millions of these people in sub-Saharan Africa require palliative care to address the medical/physical, social psychological and spiritual challenges as a result of the life-limiting illnesses.

Despite the large demand, there is still little palliative care provision across much of Africa. Many countries do not have any element of palliative care: no hospices, no formal training for medical professionals, no or little integration of palliative care into national health systems and often little public awareness.

It is estimated that only 9 per cent of countries in Africa have palliative care integrated into mainstream health services.

One of the largest challenges facing pain relief efforts in Africa is the availability of, and access to, oral morphine. It is thought that Hospice Africa Uganda, a centre of excellence of palliative care in Uganda, can mix a three week supply for a patient for ‘less than a loaf of bread’.

Despite this, oral morphine is still not widely available to most Ugandans, let alone the rest of Africa.

Bernadette Basemera, a palliative care nurse based in Kampala, explains part of the problem:

“Morphine wrongly incites fear: Doctors wrongly fear patients becoming addicted, the police wrongly fear drug related crime, and members of the government fear falling short of international drug control frameworks.”

As a result of this fear, millions do not have access to morphine and suffer unnecessary preventable pain.

In recent years however, there have been signs that this might be a thing of the past. In the last two years alone four countries – Rwanda, Swaziland, Tanzania and Mozambique – have all adopted stand alone palliative care policies.

Although policy development does not immediately translate into oral morphine availability, a number of countries such as Kenya, Nigeria, Zambia, Namibia Ethiopia and a few others have improved access to oral morphine. Meanwhile Hospice Africa Uganda, in a partnership with the Ministry of Health of Uganda, continues to produce and distribute oral morphine whilst at the same time offering training courses to practitioners from all over Africa.

At the heart of these developments are passionate workers like Bernadette. Once again working late, Bernadette describes why she wants to work in palliative care, saying:

“Palliative care is the sort of care that you would hope you and everyone you care about receives. No one wants to think of a loved one suffering unnecessarily.”

Bernadette offers a simple motivation for her work in palliative care. This simple motivation, however, could benefit millions of Africans. Palliative care needs to be rolled out, and people like Bernadette might just be the way to make it happen.

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September 20, 2013 · 9:30 pm

Reflections from a palliative care conference

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Delegates at the joint APCA/HPCA palliative care conference

I have just returned from the African Palliative Care Association and Hospice Palliative Care Association of South Africa joint regional conference in Johannesburg, South Africa and I am inspired.

This was my first palliative care conference. A year ago I didn’t even know what these words even meant. Before the conference started I could have told you about palliative care and perhaps more importantly why it is important. I would quite possibly have waxed lyrical about it being everyone’s right to live a life free from preventable pain. I might even have told you about someone inspiring that I’ve met who has spoken about the importance of palliative care to them.

But, if I am being honest, before this conference I wouldn’t have really felt it.

Something in the way I think about palliative care has changed over the last few days though. Trying to put my finger on exactly what is difficult – so much has happened. It could have though been the moment when a Ugandan journalist who I was sharing a stage with let a single tear drop roll down her cheek as she talked about her Aunty being unable to access basic pain medication in her dying days.

It could also have been when a complete stranger, who I still don’t know the name of, approached me and talked to me about the burden of feeding her bed bound mother every day as she was too frail to feed herself and that the local hospital would not accept her because, so they said, “there was nothing wrong with her”.

It might even have been that unspoken moment when a delegate was asked if she had children and after a moment’s pause she responded that, she “used to”.

But of course it was a cocktail of this and more. It was spending 4 days in close confines with inspirational people who were dedicating their lives to ensuring as many people as possible experience the palliative care that they need.

People who had talked the Bush administration into setting up a fund for palliative care in their HIV response programme. People who had pioneered palliative care in Africa 2 decades ago and were still as passionate and articulate as they ever were. People who felt a guilt for attending a palliative care conference because it meant that they were away from their patients bedsides for just under a week.

The passion and empathy of so many of the delegates from around the world touched me in a way that I didn’t necessarily expect it would.

On the final evening of the conference there was a diner reception. As I was standing watching delegates dance, joke and chatter, I thought to myself that it felt just like a family reunion. There was a tacit acknowledgement that everyone understood, at least on some level, why everyone else was there. Just like a family is bound by the bond of blood so at this conference it felt like there was an unspoken bond in the knowledge of, and passion for, palliative care.

As with all families though, there also exists unspoken traumas that rest just beneath the surface. But standing watching delegates dance I reflected on what I felt to be the strength of this “palliative care family”. Palliative care gave each member the opportunity to be able to share these traumas that we all have with each other. Everyone was accepting and expecting to offer a ear when someone needed to talk about losing a patient, friend or loved one.

During one of the workshops Reverend Rick Bauer made a comment that stuck with me. He said, “When you are talking to a patient the most important thing you can do is be there 100% with them at that moment.” I think what made the atmosphere at this conference so special was that, almost without realising, delegates were 100% attentive to those around them and to others commitment to rolling out palliative care to all those who need it.

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August 14, 2013 · 10:14 am

Peace and palliative care in the DRC

This article was first published on the Africa edition of ehospice. 

Dr Paul Pili Pili is a representative of the Democratic Republic of Congo’s Ministry of Health. But like many people from the DRC, he has been affected by the war, knows people who have died and more than anything, wishes for peace and stability for his country. Steve Hynd from the African Palliative Care Association met up him to find out more.

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June 27, 2013 · 2:22 pm

Ageing Mandela reminds us of importance of palliative care in Africa

This article was originally published in The South African.

Whilst wishing Mandela a full recovery we can, and indeed must, use this opportunity to talk about the importance of palliative care – a taboo across much of the world including most of Africa.

Left: A 1961 photo of Nelson Mandela (AP); Centre: Mr Mandela and his then-wife on his release from prison in 1990 (AFP); Right: Mr Mandela pictured in 2007 (AP)

In 1999 Nelson Mandela famously said, “A society that does not value its older people denies its roots and endangers its future. Let us strive to enhance their capacity to support themselves for as long as possible and, when they cannot do so anymore, to care for them.”

Ever self-effacing, Mandela would have said these words to offer support to other South Africans and indeed other Africans who needed this care. Now however, approaching his 95th birthday, it is clear that Mandela needs this support for himself.

People from across the world have come together to wish Mandela a recovery from his latest lung infection – a legacy of the tuberculosis he suffered from when he was imprisoned on Robben Island. Prayers have been said and fingers have been crossed as anxious individuals wait for next bulletin of news to come from Pretoria’s Mediclinic Heart Hospital.

As difficult as it is to say, it would appear that Nelson Mandela is moving closer to the inevitability of death that faces us all at some point.

Writing in the Independent, Jeremy Lawrence comments on Mandela’s ill health saying, “The dilemma his doctors face – when to stop “striving officiously” as the Hippocratic oath has it, and switch focus from curing to caring – is all too familiar to palliative care specialists. Recognising that the end is approaching and broaching the subject with the patient and their family demands strength and delicacy – and is often avoided.”

Whilst wishing Mandela a full recovery we can, and indeed must, use this opportunity to talk about the importance of palliative care – a taboo across much of the world including most of Africa.

Mandela’s support and care that he is receiving at Pretoria Mediclinic Heart Hospital sets him out as unusual. The vast majority of African’s do not have access to basic palliative care provision. The African Palliative Care Association summarizes the scale of the challenges when they say:

“A survey of hospice and palliative care services on the continent found that 45 per cent of African countries had no identified hospice or palliative care activity, and only nine per cent could be classified as having services approaching some measure of integration with mainstream health provision.”

The WHO estimates that about 1% of the Africa’s population requires palliative care – this is approximately 9.67 million people across the continent – approximately half a million of whom live in South Africa.

Death is never an easy thing to contemplate. This is especially true when we are talking about someone we love and above all an anti-apartheid hero such as Nelson Mandela. When the inevitable comes closer however, it is not only the patient who can benefit from effective palliative care, but also the family, friends, and loved ones.

In the case of Mandela, it is not just his friends, family and loved ones who suffer the pain of uncertainty but his nation, his continent and, it is not over-stating it to say, most of the world. As Mandela faces the challenges of illness and hospitalisation, the support he receives will not only ease his pain, but also the pain that others around the world feel.

Mandela is in hospital for the fourth time this year already. We stand united wishing him the quickest and fullest recovery possible. We know that his medical team will look out for any indication of suffering that may be physical, social, spiritual or psychological and deal with it.

It is important that palliative care providers in Africa follow this example, and integrate the needs of the aged and the ageing.

Mandela is a man who has inspired a generation. In his later years, hopefully the quality palliative care that he receives will continue to inspire people from across Africa.

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June 20, 2013 · 10:01 am

Refugees also have a right to adequate palliative care

This is an article that I wrote for the Africa edition of ehospice news for World Refugee Day. 


The WHO states that: “The enjoyment of the highest attainable standard of health is one of the fundamental rights of every human being.” On UN World Refugee Day it is important to reiterate that this applies equally to people classified as refugees.

The fulfilment of this right is pushing both governmental and non-governmental organization’s capacity to their limits as the number of refugees across Africa continues to rise.

Read the full article here >>>

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June 15, 2013 · 6:11 am

Russia is leaving cancer patients to die in pain – where is the outrage?

An edited version of this article appeared in Liberal Conspiracy – the UK’s most popular left-of-centre political blog. 

In Russia cancer patients are left to suffer and ultimately die in pain with inadequate access to basic pain control drugs such as morphine. When one doctor defied the state’s overly restrictive laws, she was arrested. It is time for the healthcare community to speak out.

Dr. Khorinyak allegedly wrote out two prescriptions for the pain relief medication tramadol. The prescriptions were for Victor Sechin, a terminally-ill cancer patient. In the eyes of the Russian state, the medical practitioner of more than 50 years broke the law.

In 2011, it is thought that the Russian Federal Drug Control Service discovered the prescriptions at the local pharmacy, and referred the case to the prosecutor and the court. Dr. Khorinyak was then charged under:

  • Article 234 of the Criminal Code: “Trafficking potent substances in large quantities by prior agreement with the intent to sell, an organized group”;
  • Article 327 of the Criminal Code, “Forgery of documents in order to facilitate the commission of another crime.”

The online palliative care news service, ehospice, spoke out about Dr. Khorinyak’s case. Quoting Trustees of the Worldwide Palliative Care Alliance (WPCA), the ehospice article said:

“The Worldwide Palliative Care Alliance is seriously concerned to hear about the prosecution of Dr Alevtina Petrovna Khorinyak…We fully support Dr Khorinyak in attempting to provide pain relief for patients coming to her for help. We stand in defence of her professional practice and her humane response to patients in pain.”

The article finished by urging readers to sign a petition calling for the charges against Dr. Khorinyak to be reversed. The editor of the international edition of ehospice, Kate Jackson, explained her decision to run the story saying:

“Dr Khorinyak performed her professional duty and acted with compassion towards a patient in pain. If it is outside of the laws of a country for a doctor to treat a patient to the best of their ability, then there is a need for a serious and urgent re-examination of those laws.”

Indeed, Russia’s overly restrictive laws regulating access to morphine have been the focus of on-going criticism for a number of years.

In its 2012 annual report, Human Rights Watch commented on Russia’s health policy saying:

“Although over 300,000 Russians die of cancer each year, with many facing severe pain, available palliative care services remained limited. As a result, hundreds of thousands of patients die in avoidable agony each year. In much of the country, the government does not make oral morphine available through the public healthcare system, or adequately train healthcare workers on modern pain treatment methods. Existing drug regulations are excessively restrictive and limit appropriate morphine use for pain relief.”

Indeed, the UN Special Rapporteurs on the Highest Attainable Standard of Health and on Torture, Cruel, Inhuman and Degrading Treatment have said:

“The failure to ensure access to controlled medicines for the relief of pain and suffering threatens fundamental rights to health and to protection against cruel, inhuman and degrading treatment.”

Indeed, Article 21 of the Russian constitution states that:

“The dignity of the person shall be protected by the state. No circumstance may be used as a pretext for belittling it.”

Simply put, palliative care is a human right.

In Russia though, 450,000 people are diagnosed with cancer every year resulting in more than 2.5 million people suffering from the disease. Russia not only has a clear moral obligation to support these patients but also a legal human rights responsibility as well – one that it is currently neglecting.

With the noble exception of ehospice and a handful of other professionals, few have spoken out. The Russian government is standing by while thousands needlessly suffer. When one person does speak out, she is prosecuted as a criminal.

It is time for health care professionals from around the world to stand up for Dr. Khorinyak and speak out, not only against her prosecution but also against Russia’s wider neglect of patients in need of pain relief.

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May 8, 2013 · 2:18 pm

Photo essay – palliative care workers from francophone Africa

I am not a photographer, and would never claim to be. But these are photographs that I took of a few of the participants of the palliative care training course for francophone Africa that is currently being held at Hospice Africa Uganda. Some of these photos are published on the African edition of ehospice.

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April 23, 2013 · 10:27 am

“You cannot be happy to see your dad suffering…”

This is an article that I wrote for the Africa edition of ehospice.


Mutagubya Bruno is the son of Lawrence Ssenyonde. Lawrence has cancer of the prostate and needs oral morphine to relieve his pain. Bruno recently talked to ehospice about what life is like caring for a family member in severe pain.

On the outskirts of Kampala, Mutagubya Bruno lives with his mother and father. A small alleyway leads to a neatly kept garden that is lined with palm trees and freshly hung clothes on a washing line. Bruno breaks the conversation he is having with his mother as a small delegation from Hospice Africa Uganda arrive through a side gate to their house.

In the living room, the three health care professionals sit in a line craning their necks to try and listen to Bruno’s father as he describes his pain. As Bruno’s father speaks, one of the nurses sorts through her case notes. She glances at the previous dosages of oral morphine Bruno’s father has received.

Throughout the conversation Bruno sits on the edge of a worn-out arm chair opposite his father looking on.

Read the full article here >> 

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