Health Editor, Hannah Overton, sheds light on an unjust end of life disparity…
My Grandmother was diagnosed with cancer on a Saturday. By the Monday, her husband’s birthday, she lay in a private room in Bristol’s Southmead hospital, begging God to end her life. For us, her family, watching her in agony was torture. Without the morphine the nurses, angels in scrubs, administered, calming her significantly, it would have been unbearable. Every half hour, they came with a needle that offered an oasis in a desert of pain. She died on the Tuesday morning, with one last injection easing her over to whatever lies waiting for all of us. Thanks to the care she received on the NHS, she was able to experience as painless and dignified a death as the ravages of cancer would allow. But for the millions of people in the developing world without access to palliative care, the idea of a painless and noble death is impossible to even imagine.
80% of the worlds palliative care needs are in middle and low income countries but only 20 countries, nearly all high income, have end of life care integrated into their healthcare systems. This means that an appallingly low percentage of people (around 10%) have access to the care they need . In many countries in the developing world, morphine (the most effective pain relief medication) is manufactured by poorly managed governments. This leads to erratic supply levels which leave thousands in pain when stocks run out. In other countries, morphine is strictly illegal. All this means that only 8% of people in low income countries who require morphine receive it. Fear of addiction rates highly on the list of reasons for doctors not prescribing morphine in countries where it is legal. There also remains a belief that to take morphine is to give up, to accept death, despite the proof that taking pain relief prolongs life rather than shortens it.
But, according to the World Health Organisations, pain relief is just one facet of palliative care. It also includes addressing the “psychosocial and emotional suffering of patients with serious advanced illnesses and supporting family members providing care to a loved one”. Given that many countries in the developing world have only one mental health practitioner per 100,000 people, this seems like an unattainable pipe dream. In countries drowning in poverty and corruption, caring for the emotional needs of vulnerable people is not exactly high on the agenda.
This lack of access to care has real victims. The New England Journal of Medicine reports on Artur and Vlad, two Ukrainians. Artur, who suffered from metastatic cancer, moved hundreds of miles from his family so that they couldn’t see him in pain. “I don’t want them to see me cry” he said. Alone and suffering, Artur turned to what he felt were his only two options: alcohol and the gun under his pillow. Vlad, who had brain cancer, threw himself out of a window in an attempt to end his own life. He survived, suffering for two more years with obstinate pain. The BBC writes about Dinesh Kumar Yadav, a man from north India who had to take a 30-hour bus ride from his home to get morphine for his wife who was bedridden with pain. These stories are a real reminder of the suffering of society’s forgotten patients.
Even in this country, there is a shocking disparity between the quality of care given to those in areas of “low deprivation” and those in areas of “high deprivation”. According to a study by the Marie Curie charity, those in deprived areas were “significantly less likely” to report the palliative care they received as excellent or outstanding compared to those in areas with a high standard of living. Why is the discrepancy between rich and poor still so stark? Do those in deprived areas not have a right to die with dignity and without pain? Is this difference in care perhaps due to service users being unable to afford private insurance and instead having to rely on beleaguered charities? All part of the much promised Big Society!
Perhaps we choose not to think about those in need of end-of-life care so as to not be reminded of our own deaths. But these patients exist and they need help. Effective palliative care prolongs lives, giving people more time to spend with their loved ones. Everyone should have the right to access the healthcare they need at every stage of life, including the final one.
In some parts of the developing world, hope is on the horizon. Many countries have started to organise community-based palliative care, the cheaper option to hospice care. In Kerala, in southwest India the Neighbourhood Network in Palliative Care trains local volunteers to support chronically ill people in their community. In Tanzania, a project called The Continuum of Care for People Living with HIV/ Aids expanded inadequate palliative care services by linking them with Lutherian churches and hospitals. These innovative projects have been incredibly successful and provide an example to other countries with woeful end-of-life care options.
Joan Weeks, my grandmother, died surrounded by family. Thanks to the wonderful staff of the NHS, we don’t have to remember her as a woman in pain. Instead, we remember her as the woman who was rubbish at Scrabble and sneakily drank Bailey’s in the kitchen at Christmas. No one should have to die alone and in pain. Those in the developing world deserve access to the same care those of us in the UK can look forward to. If you have the money, please make a difference and donate to the organisations below.
Charities that provide palliative care:
In Sub-Saharan Africa: http://www.hospice-africa.org.uk/donate-now
In Asia and the Pacific: http://aphn.org/donation/