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