James Smith* and Tammam Aloudat**
*UREPH, MSF OCG,
**Medical Department, MSF OCG
Medical humanitarian organizations don’t generally deal well with death. This may come as a surprise, since it’s a sombre reality of this line of work that frontline staff are often witness to death and dying. Contrary to the humanitarian’s general propensity for self-aggrandizement, it’s not always possible to save lives. So what then of the oft-cited dual imperative to alleviate suffering and preserve dignity?
The evolution of the global HIV / AIDS epidemic during the 1990s, and more recently the 2013-16 Ebola outbreak in West Africa, prompted humanitarian actors to reconsider the role of palliative care in their programmes. During the height of both crises, health actors were pressured by a combination of highly virulent pathogens, inaccessible or non-existent treatment, the sheer number of affected patients, and subsequently very high mortality rates, to reconsider their modus operandi.
In 10 Years of Antiretrovirals MSF acknowledged that, in the absence of affordable anti-retroviral treatment, the organization chose to focus on prevention, palliative care, and the treatment of opportunistic illnesses in Malawi. The more recent Pushed to the Limit and Beyond report detailed MSF’s response to the West African Ebola outbreak. In the following extract Crestani, MSF’s Ebola Task Force Coordinator, offers a harrowing insight into the challenges faced by treatment teams in Monrovia during the summer of 2014:
“We had two choices – let those in who were earlier in the disease, or take in those were who dying and the most infectious … We could only offer very basic palliative care and there were so many patients and so few staff that the staff had on average only one minute per patient.”
In addition to very high mortality situations such as the Ebola and HIV crises, much of MSF’s medical humanitarian work still focuses on common diseases in very low resource health settings. Medical care delivered in hospitals in the Democratic Republic of the Congo or South Sudan, or clinics in Iraq or Syria, may save many lives. However, without the necessary resources and organizational and political prioritization, we continue to lose many patients to injuries and common diseases in these settings. In such cases, little may be done to alleviate the pain and suffering, and optimize end of life care, of those who cannot be treated. Advanced cancers, COPD, and congestive cardiac failure are difficult to treat and have yet to be addressed with necessarily broad management plans that capture the importance of end of life care.
Reflection 1: A Reluctant Acceptance of Limitations of Care
James Orbinski famously referred to MSF’s ‘ethics of refusal’ in the organisation’s 1999 Nobel Peace Prize acceptance speech. But what does this mean at the level of the clinical encounter? Clinicians often persist in their provision of care with curative intent, particularly when treating patients whose conditions are familiar to MSF: consider severe malnutrition and severe malaria, for example. The practice of humanitarian medicine in low resource settings is a continuous struggle between the desire to do better for individual patients, and recognition of a multitude of limitations, which often remain beyond the immediate control of medical personnel. It is imperative that this struggle does not impede the physician’s ability to make the most appropriate clinical decisions for individual patients.
Palliative care is now acknowledged as a central pillar of any comprehensive health system. This is clearly no different in the context of a humanitarian crisis. However, despite recognition that palliative care is routinely practised in many of our programmes, a dearth of evidence and guidance exists to support frontline staff and decision makers. There is no mention of palliative care in the Sphere handbook, and comprehensive reference to pain relief and palliative care is virtually non-existent in most of the publicly available guidelines published by leading medical humanitarian organizations.
How is it that palliative care has been so neglected by the humanitarian sector?
Utilitarianism’s Disregard of the Dying
Humanitarian crises exist where population needs exceed the existing capacity to respond. In situations where overwhelming needs cannot be met in full, difficult decisions must be made. In such circumstances, medical staff are often prompted to adopt a utilitarian approach: the greatest good must be achieved for the greatest number of people. Others adopt a different approach, and seek to intervene with a narrower focus.
Irrespective of the chosen framework, implicit in much of this decision-making is the overarching aim of saving lives. Consider, for example, the way in which crude mortality rates (CMR) and under 5 mortality rates (U5MR) are used to determine success or failure in crisis response. The preservation of life takes priority over other outcome measures. To palliate becomes tantamount to failure. This is reinforced by a system of humanitarian financing that focuses on outputs and demonstrable outcomes, often of the material kind.
The intention of saving lives is clearly a priority in such circumstances where lives can be saved. However, there is an urgent need to address gaps in our understanding and practice of end of life care where curative and lifesaving interventions fall short. We have identified the treatment of patients with HIV, TB, and complex non-communicable diseases, the victims of trauma and violence, paediatric patients with life-threatening congenital, genetic, and other conditions, and the effective management of pain, as priority issues.
Palliation: Reiterating an Intrinsic Good
The alleviation of suffering is clearly a moral good, as Lisa Fuller explains in Many Missions, One Voice (2003),
‘Demonstrating compassion for people and to alleviating their immediate suffering … are good in themselves, and so need not be evaluated primarily in terms of their good consequences.’
With this in mind, resources should be allocated to improve palliative care programming in MSF projects. Such resources should include the sensitization and training of staff, the development and application of norms and protocols for palliative care, and targeted work to ensure sustained access to tools and medicines, including advocacy to tackle regulatory barriers that prevent the importation and use of opioids in certain countries.
Reflection 2: The Perception of Pain
Pain management, particularly related to the use of opioids, is not consistently practised in MSF projects. There are several reasons for this, including regulatory limitations and a lack of confidence in opioid use by physicians and nursing staff. This is further exacerbated by judgements made on the severity of pain, particularly when dealing with paediatric patients. As an example, we recently asked national staff physicians about their perception of pain in young children in the intensive care unit of a large malnutrition hospital. In a second round, we asked the same question of mothers of the same children. The mothers consistently evaluated the pain to be more severe than the physician estimates. None of the children in question were receiving opioid pain relief despite some suffering from severe cases of malnutrition, malaria, and pneumonia. The reasons cited by physicians for not using opioids include legal issues, lack of training and experience, and the absence of naloxone in some settings.
MSF has an established track record of programmatic and advocacy interventions intended to redress inequity in global health. It is time that we asked serious questions of the neglect of palliative care and pain management in the places we work. Where next from here? As with others in the humanitarian community, we eagerly await further details of the ‘Aid when there is “nothing left to offer” study. In the meantime, MSF is in the process of developing the organization’s first paediatric palliative guidelines, which we hope will shed more light on this important topic.
by Brett Sutton
When I was first introduced to palliative care as a medical student, it struck me as a rather mysterious medical specialty. Remarkable in its acceptance of death and dying, when all the rest of us were battling to save lives, almost as an end in itself. Doctors always out to ‘cheat death’, regardless of means and sometimes wilfully disregarding the suffering incurred along the way. Palliative care practitioners in stark contrast appeared to me to be amazingly resilient,with depths of compassion and a unique medical perspective. I still think that.
Now, though, after a twenty year career in emergency medicine and later public health, I don’t see palliative care through that mysterious lens anymore. After work in Afghanistan, Ethiopia, Timor-Leste and beyond, I can’t conceive of it as a kind of ‘add-on’ medical specialty, reserved for a very few for whom “nothing more can be done”. Ah, yes. Nothing more can be done. I hate that saying. As if curative treatment is the only thing that counts. That pain relief means nothing. That loving kindness and relief of suffering are nothing. So very much can be done in the last days of a person’s life; it can mean the world to them and their family.
I wish I’d had better palliative care skills when I worked in Afghanistan, for Médécins Sans Frontières (MSF). One of my patients with tuberculosis was dying, probably from drug-resistant TB, following years of inadequate, ad hoc, unsupervised treatment. It was typical for the very poor to buy only as many TB drugs as they could afford at the time, perhaps lasting a week or two. They’d get better, then relapse and weeks or months later buy some more. And instead of taking four different TB drugs together to prevent resistance, they’d take just one. All freely available, without prescription, to anyone willing to pay. She was only in her twenties and she was dying, despite MSF’s dedicated and robust TB program. We simply didn’t have the second-line drugs she needed; they cost one hundred times more and were – at the time – pretty toxic.
Her husband and I were sitting in the back of the MSF car, having just been at home with her to try to understand why she was worsening. I’d concluded she was dying (and probably thought nothing more can be done) but I didn’t know how to tell him, this devoted man who had no doubt hoped to begin a family and have a long life with her. He turned to me and said something in Farsi, and so I looked at the translator, expectantly. The translator looked down, silent for a time, and then told me that he’d asked: “Shall I buy a shroud?”
“A what?” I said.
“A shroud. You know, for her…burial” said the translator.
“Oh…um…she…” I mumbled. I looked at this already grieving man as he held my gaze intently. “Yes…” I said.
In many ways this young woman was lucky. We provided some basic support to her. She wasn’t in pain. Her treatment, although futile, was free. She wasn’t alone as her husband lovingly cared for her in the mud brick shelter of the internally displaced person’s camp. She died two days later. For many in the world today dying occurs in much more bleak circumstances; sometimes in hellish circumstances.
In the MSF-supported hospital in Herat, Afghanistan, other women were manifestly less fortunate. The obstetric ward would receive many women who finally arrived after days of obstructed labour in their remote village. They needed Caesarean Sections to deliver their children; children who were invariably, tragically, already dead. Without ketamine, a wonder drug which can be used safely for surgery in developing and developed countries alike, these women received only intravenous diazepam (Valium). It doesn’t provide pain relief, only sedation. So as they awoke, not only were they hurriedly presented with their dead child to take home and bury, but they awoke in physical agony. Not allowed more than five minutes on the bed, due to the sheer pressures of arriving women, they were discharged home. And what pain relief were they given then? Acetaminophen; better known as Tylenol. Two tablets, then home. What you and I would take for a mild headache, they took for major surgery.
Opioid painkillers – such as morphine – are what these women should have received. Cheap, effective and safe, morphine should be readily available across the world, yet it is still highly restricted in so many places. In part due to an absurd ‘war on drugs’ and also because of an irrational fear of fomenting addiction, opioids remain grossly underutilized. The UN General Assembly Special Session on Drugs (UNGASS) closed in New York this April with lip service to a public health-focused strategy on the drugs wars. With such global intransigence and lassitude apparent, some countries are pressing ahead with liberalization reform for illicit drugs. Yet there’s little progress on the availability of opioid medication in places where it is most needed, such as Afghanistan and India.
Most of us have experienced severe, uncontrolled pain for minutes, perhaps hours. A few of us are unfortunate enough to suffer chronic pain, but at least we can seek expert advice and relief of some kind. And we’re not dying. Yet palliative care is still unavailable for far too many at the end of life. In 2009, Human Rights Watch estimated that in India more than one million patients with advanced cancer suffered severe pain in any given year. They estimated that fewer than 4% of patients had access to appropriate pain treatment (that’s code for opioids). This was a consequence of restrictive drug regulation, poorly trained doctors and poor integration of palliative care into health services.
Some have debated as to whether allowing patients to suffer intolerable pain amounts to cruel, inhuman or degrading treatment. Even torture. Torture, however, implies a wanton and malicious desire to inflict pain. I don’t believe that occurs in the vast majority of individuals who suffer without access to adequate pain relief, even when it’s withheld deliberately. Yet debates regarding our legal and ethical obligations are important – indeed essential. They just shouldn’t be left entirely to legal arguments in Courts of Human Rights. There is a moral imperative here to address complicity through inaction in suffering on a global scale, especially for those at the end of life. Semantics and legal nit-picking take us away from the pressing need to address the circumstances that we all agree are indefensible – leaving someone in intolerable pain when relief from suffering is easy, safe and affordable.
Imagine you were dying and suffering from constant, severe pain that made you wish for death. Treatable pain. Opioid medication could readily alleviate it, but it wasn’t given to you. Cruel? Inhuman? Degrading? Torture? What would you call it?
Dr Brett Sutton is a public health doctor, co-chair and co-founder of Palliative Care in Humanitarian Emergencies (PCHE).
This blog was originally published on Brett Sutton’s LinkedIn page: https://www.linkedin.com/pulse/our-global-complicity-torture-brett-sutton?trk=prof-post
Photo credit: CDC/ Amanda Mills
Elysée Nouvet and Lisa Schwartz co-authored a blog post for ALNAP on July 10, 2015 entitled:
Is palliative care in humanitarian crises a luxury?
If there is one thing the Ebola crisis has generated these past 18 months, it is widespread recognition that globally we could be better prepared for responding swiftly and ethically to complex pandemics. Ethical issues that surfaced in the panicked first months of the last Ebola crisis have ranged from debates on whether or not healthcare workers in non-Ebola affected countries have a duty to respond and assist their colleagues in other affected countries, to the absence of a standard of care for treatment of affected patients. As members of the Humanitarian Healthcare Ethics Group, we were surprised that another big question was not, and still is not, receiving the deliberation it merits: What are the responsibilities of humanitarian healthcare teams, if any, vis a vis the palliative needs of patients?
Visit the ALNAP blog to find the full post.