Opinion and debate: It’s time for humanitarians to shine the spotlight on the neglected issue of palliative care

30 Mar 2015
Opinion and debate

Emma Pedley
Médecins Sans Frontières/Doctors Without Borders (MSF) nurse

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When you consider the multitude of complex, rare, neglected and difficult to diagnose diseases that humanitarian medics are faced with in the field, it’s little wonder that palliative care in low resource settings has little attention placed on it.

But in contexts where many maladies are untreatable (notably all cancers), and many others ultimately life limiting (hepatitis C, HIV and acute cardiac events) should more of an emphasis on quality end of life care be given by humanitarian actors?

The fundamental humanitarian belief that every life matters and is worthy of care surely should not end when that life is no longer deemed savable – something that I have seen too often in my two overseas missions.

The issue is not a simple one of neglect, but more often of oversight as a result of inevitable time pressure – where medical human resources are so stretched, it is only natural that medics will focus attention on the cases where they feel that they can make a difference in survival.

Choice of drugs

Drug availability and choice is also all too frequently a limiting factor.

With the tight forecasting and ordering system used by emergency and relief organisations, there is little wiggle room to use the limited quantity of precious opiate-based pain relieving medications or antiemetics on a patient who is certain to die, when they could be used for example to help relieve pain and thus improve outcomes post-surgery.

And any increase in use would require prediction and ordering months in advance. But by the time the drugs arrive in project, expat clinical staff are likely to have rotated and unless institutional memory and communication is good the newly arrived drugs risk gathering dust and expiring on the pharmacy shelves.

In terms of the drugs required, a slightly wider range would need to be considered; oral preparation rapid release opiates, injectable antiemetics of good efficacy, a choice of laxatives to counteract the uncomfortable side effects of immobility and morphine.

These are not expensive drugs. They are not difficult to store, like vaccines. They are also not exclusive to palliative care but have other applications and uses.

Nurse-led palliative care

There is also something of a flaw in our medical reporting processes whereby a high inpatient mortality rate is nearly automatically read as a reflection of a poor standard of care.

In fact, the opposite may be true: in my last assignment in the Central African Republic, a neighbouring NGO clinic would refer patients to us who were either complex cases, or for whom they could treat no further – and neither could MSF, if by treatment you are focused exclusively on survival.

One memorable month, six out of seven inpatient deaths were the result of such referrals, and our skewed statistics displayed the fact, which required a great deal of justification when reporting time came.

Palliative care in the UK is often nurse-led, and perhaps that is a model we could look to.

The realities of the field dictate that doctors are better placed as diagnosticians and clinicians; end of life care – requiring, as it does, close evaluation of pain, sensitive communication and attention to personal care – is a more natural leaning for someone from a nursing background.

Woeful neglect

As humanitarians – and let’s be frank here – we are drawn to a career where trauma, high tensions and interesting and dramatic stories take centre stage in our, and the wider world’s, attention.

Palliative care – like mental health– is not particularly dramatic, exciting or sexy.

And, like mental healthcare, it has been woefully neglected, nowhere more so than in the West where it is only in the last few decades that genuine attention has finally been granted to it through policy development and funding, and even then it is often charity generated funding.

With the negative media furor in recent years over the Liverpool Care Pathway, which was used in the UK, the introduction and implementation of full end of life protocols in very different cultural contexts would need to be done sensitively, with the full understanding and engagement of national staff medical colleagues at every level.

Death should be addressed

In many cultures where death is often better embraced as a natural part of life, instinct suggests that acceptance of this kind of care would be more likely than outright rejection or suspicion of it.

But the facts that drug supply, colleague engagement, and local implementation would be a challenge should not dissuade us from addressing the simple fact that death is frequently unavoidable and ultimately inevitable for us all – a truth that as humans we often prefer to sidestep.

So let us rise to the challenge and dignify the inevitable issue of death with better attention.

We can’t always help everyone live a good life. Let us, as a medical humanitarian organisation, try and be more open to the ways in which we may be able to help our patients die a comfortable and 'good' death.

Emma Pedley is a British born Emergency Department and Intensive Care Unit nurse. She has just returned from her second MSF mission in Central African Republic, from which she frequently blogged. Read her posts from CAR and her previous mission in South Sudan.

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