Wednesday, October 17, 2012

Human Rights: We All Should Have the Right to "Die Well"

Source: Open Society Foundations

We All Should Have the Right to "Die Well"

by Faith Mwangi-Powell

In a moving New York Times article, "How to Die," Bill Keller talks about the dignified death of Anthony Gilbey, in the east of England. He finishes the piece by saying, "We should all die so well."

What is "dying well"? Having your wife kiss you rather than having an oxygen mask on your face. Having your pain fully controlled and your loved ones by your side. Or as Keller puts it: “Dying gently, loved, knowing it, dignified and ready.”

The notion that we can all die well has brought me several thousand miles and across many oceans from Uganda, East Africa, where I was based for the last eight years as the executive director of the African Palliative Care Association—a pan-African organization supporting the scale-up of palliative care across Africa—to New York, to work with the Open Society Foundations. My journey is inspired by the commitment to fight and uphold the right to a good death for all of us. As such, I agree with Keller that we should all die so well—but I add, with or without the phenomenal Liverpool care pathway that he discusses.

In this respect, I’m reminded of Susan, a 35-year-old mother of three, who lived in a semi-rural part of Uganda. Susan knew she was poor—but not from the perspective of tangible wealth. Although she owned no house or land title, had no formal employment, lived from hand to mouth with the money she made selling second-hand clothes, and her children frequently missed school due to lack of fees, this was not Susan’s description of poverty.

Susan was sick. She'd had poor health as long as she could remember, and for a long time she was treated for various ailments, ranging from fever, to malaria and pneumonia. More recently, Susan was treated for TB. She noticed she was not getting better and, in her quest for answers, discovered she had HIV/AIDS. Then Susan’s mum died of breast cancer several years ago, and her doctor told her she needed to be examined given she was at risk of contracting the illness. The examination confirmed that Susan had advanced breast cancer, too. As the cancer developed, Susan had been in constant pain, coupled with symptoms that included diarrhea, nausea, fatigue and a deep, irritating cough that made it difficult for Susan to sleep at night.

She was on treatment when I last visited her. Given that her illness was so advanced, I knew she would not recover. I asked Susan what her biggest challenge was. She told me it was pain, fatigue, and the troubling cough. She paused, then said that she also desperately wished she could go and visit her only sister in the village, as she had not seen her since her mother died.

Three days later, one of the country’s palliative care teams visited Susan in her home. Sitting on the floor of her house, Susan received liquid morphine for pain and treatment for her cough and other symptoms. A week later, I heard from the team that Susan wanted to see me urgently. I visited her and learned that her pain had been resolved, and her cough was improved. She was in good spirits and planning to visit her sister, as she knew she had little time left to live. Susan died four weeks later with her sister at her bedside. She also felt loved, dignified and was ready to die.

Palliative care, either provided in hospital settings or at home, ensures that patents die well. This is a human rights issue that we all need to fight for our loved ones and for ourselves. By doing this, we fight for everyone.

For me this fight is personal, but I don’t want to fight it alone. As one prominent physician of palliative care, Professor Scott Murray, often says “We are all moving towards the end of life, this is guaranteed; what is not guaranteed is how we go.”

Given the choice, we would all like to die well, knowing that we are loved, dignified and ready. That is what palliative care offers. The vision of the International Palliative Care Initiative of the Open Society Foundations is to support the development of quality palliative care and respect for the human dignity of all patients with life-limiting illnesses across all care settings. We believe that provision of palliative care is a core human right, both throughout the disease trajectory and at the end of life, and this care should be available to all who need it regardless of where they are.

Beyond grantmaking, strategic development, and capacity building, global advocacy plays a key role in ensuring that national and international polices that support palliative care are developed and supported. The stories of Susan and Anthony, and of many others we typically do not hear about, inspire my work as senior program officer for global advocacy. With the Foundations' reputation and track record for advancing justice, I feel well equipped for the work of helping ensure that one day, we can all have the right to die well.