Caring for the dying – hope as medicine

Dr Colleen Cox, a founder member of PalPrac a voluntary association of medical doctors with post-graduate training in Palliative Medicine, was presenting her postgraduate thesis to some 500 delegates to the Palliative Care Conference at the Vineyard Hotel in Cape Town last week (26-29 April).

She said that a survey of 11 terminal patients treated at King Albert Luthuli Academic Hospital and Chatsworth Hospital and 11 of their family caregivers provided some fascinating insights into the role of hope in palliative care.

She asked: “How does a young woman in her early 20s, about to be married, remain so positive and hopeful when she has, say, two years to live? She’ll never have children or grandchildren. How does a middle-aged man see mortality as a gift to bring his previously disengaged family together?”

She challenged her colleagues to think about what they could say to patients without resorting to false promises while telling the truth about their illness and prognosis in a way that did not remove hope.

Cox said all literature on the subject agreed that hope at any stage of life was one of the most essential aspects of living and coping with serious illness. It improved treatment adherence, encouraged healing and ameliorated suffering while enhancing quality of life and facilitating resilience and adaptation to a changed reality.

Hope could change over time but provided an opportunity for personal growth, an important aspect of which was the perception that life was meaningful. It helped the group interviewed to find meaning and purpose in the remaining time they had.

“We play an essential role as agents of hope, so it’s important when drawing up our palliative care plans to actively consider all interventions that foster hope,” she said.

While there were very few studies of hope in the developing world, those in South Africa focused on the psycho-social aspects, highlighting a strong link between spirituality and hope.

Her study provided unanimous affirmation that hope was vitally important and one of the main things that carried patients through their journeys. A belief in God or oneself, having a goal and purpose contributed to psychological fortitude and, ‘living well, yet being ready to die.”

Six of her 11 patients spoke of hoping for a miraculous cure, but all remained realistic about their prognosis, demonstrating how patients moved between acceptance and hoping for a miraculous cure.

“Many spoke about experiencing meaning in suffering and the wellbeing that came from peace and forgiveness. Many hoped for loved ones to experience comfort and non-abandonment,” she added.

Remembering the resources which they had previously used to cope was very helpful in coping with the present and in overcoming obstacles, with one patient saying, “I’ve had a hard life, that’s why I’ve always had hope.”

Traditional healers were a source of hope while other contributors were physical and psychological comfort and being treated with respect.  Hope was instantly removed the moment they heard a doctor utter the phrase, “there’s nothing more we can do.”

Dr Cox concluded that hope was strongly associated with human connection and support, physical and psychological comfort, and spirituality. Overcoming previous adversity was a source of hope for most – and all preferred truth-telling with empathy.

She ended by quoting a letter to Winnie from husband Nelson Mandela when he was incarcerated on Robben Island, stating that hope was, ‘a powerful weapon that no power on earth can deprive you of, ‘and that, ‘it is our human compassion that binds us to one another.”