Bringing Palliative Care to the Home
Above, entrance to a Khartoum home.
Below, Dr. Nahla Gafer, oncologist and Sudan’s leading specialist in palliative care. Dr.Nahla heads Khartoum’s first palliative care unit, based at the capital’s Radiation and Isotope Centre. In addition to the unit’s twice weekly clinic at the hospital, Dr. Nahla and her highly skilled volunteer staff undertake bimonthly home visits to those suffering from advanced cancer.
Last month I accompanied Dr. Nahla and her colleague, Muhasin Ibrahim, on one of their many home visits. The patient was a ninety-year old matriarch and grandmother, affectionately known as “habbooba” in Sudanese Arabic, in the last stages of terminal cancer. What I was privileged to witness on that visit was a re-affirmation of life and a profound consolation, both for Habbooba and her family.
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Bringing Palliative Care to the Home
Our taxi stutters its way through the capital’s chaotic Saturday traffic. It’s about half an hour before we reach our meeting point. On a weekday the same journey would have taken three times as long. Our patient’s son – tall, courteous and grave with the weight of responsibility, is waiting to lead us on to his home through a maze of potholed backstreets. It has taken several meetings and phone calls with Dr. Nahla and her team to reassure him that they will not distress his mother by mentioning the words “cancer” or “death”.
As we draw near, Dr. Nahla, reading his unease, again reassures him, explaining why they have come and what they will do. The young man’s decision to seek palliative care at home for his dying mother is a testimony both to his love and his courage. So many terminal patients in Sudan uproot themselves from all they know in their final months, pouring their life savings and failing energies into treatments abroad or journeying hundreds of miles to the capital for care, only to die in the regimented setting of a hospital ward while the family members who have accompanied them eke out their savings to stay in the capital.
We enter a cool, tiled sitting room. Rope beds line the walls, punctuated by low wooden stools. We are invited to sit down and sweet drinks and dates are served. Habbooba’s extended family flow in to greet us. Grandchildren smile shyly at us from the doorway. Dr. Nahla introduces herself and her colleague, learns everyone’s names. The ceiling fan above us clicks and whirs, stirring the cataract of sheets on one of the beds. Emerging from the heaped jumble of cloth, two-dimensional and disconcertingly still, the face and hand of a body sunken deep into the bed frame. My mind goes unbidden to whispered accounts of relatives who took to their bed, turned their faces to the wall and waited, unblinking, for death.
Dr. Nahla approaches Habbooba, asks permission to shake her hand and chat a little, both with her and the family members lining the room. Habbooba wheezes her assent. Over the next twenty minutes, Dr. Nahla and Muhasin coax her into conversation until we learn how she really feels today, how she felt yesterday, how she felt last week, where and when the pain is worse, if she is eating, what she is eating and what she feels like eating; if she is really comfortable, so far from her village, staying with the Khartoum branch of her family she came to celebrate Ramadan with and never left – she is. Her family listen attentively, adding their stories and Dr. Nahla listens attentively back. She learns that this loving family are doing their very best, yet are feeding Habbooba a diet of only honey and water and are too fearful to help her leave her bed. Indeed, she has not left her bed for several days. Dr. Nahla asks if she might show them how to help Habbooba move her arms and legs to ease her pain and aid circulation, if she might offer a routine of daily bed exercises. Why not slip a pair of loose trousers over her legs, she adds, so she will feel more at ease when doing her leg exercises. And although Habbooba can no longer bend to pray, Muhasin adds, she might use her fingers to pray the sibha (Muslim prayer beads). The conversation gently moves on to her wounds and sores – how to dress and soothe them. Dr.Nahla reassures them that Habbooba can and should eat – the same nutritious, digestible dishes they make anyway. She reminds her son of the vitamins and minerals the team has prescribed for her.
Later, Muhasin will examine Habbooba and Dr. Nahla will advise the family on her morphine medication at home, stressing they can call the clinic, open twenty-four hours a day, at any time for help, advice and prescriptions.
The family are now visibly more at ease and Habbooba follows the conversation, nodding or frowning in agreement. Dr. Nahla ventures that Habbooba might sit up a little, perhaps even walk across the room. She could show Habbooba’s daughters-in-law how to support her as she raises herself from the bed and takes a few shaky steps across the room, if they would like. After a few moments, flanked by her daughters-in-law, Habbooba reaches the doorway into the living room, where she pauses to gather her strength and watch her grandchildren running in and out.
When we take our leave a few minutes later, Habbooba is sitting in an armchair, chatting to her grandchildren in the living room. Gloriously present, all her three-dimensionality restored, she is engaged, alive, her face illuminated in the mid-morning sun. Her family, confident now, plan for the team’s next visit.
Habbooba’s family are well-off by Sudanese standards. They have a car, ceiling fans, a fridge and water cooler. Their love and concern for Habbooba are heartfelt. Yet, before Dr. Nahla’s visit, they lacked the knowledge and practical skills that make all the difference to the quality of life their mother and grandmother has a right to enjoy in her final weeks.
Many of Dr. Nahla’s other patients, though, are among the poorest and most deprived of Sudan’s citizens and Dr. Nahla strives every week to reach more of them. Her team find themselves helping with the funding of food and medicine for their patients and families, and relying on donations from international bodies for the liquid morphine, drips and transfusions so vital to palliative home care.
They battle against the stigma a cancer diagnosis holds among relatives, the fear of touching a sick family member, the rejection of a wife with cancer by her husband, and even the removal of her children by the husband’s family. The blind incomprehension of a family who, unable to bear the howls of pain of their dying relative, incarcerate them in a back room or outhouse. Working with the family of the patient; respecting, negotiating and collaborating with them goes hand in hand with delivering care for their patient.
Dr. Nahla and her team enable their patients and their families to live their last weeks and months to the full, at home if that is what they wish, surrounded by the people, memories and things that bring them solace. “Palliative care”, Dr. Nahla explains, “is for everyone, no matter their economic or social status”. Every month her team’s home care mission brings that goal a little more within reach.
Meet Dr. Nahla’s extraordinary team next month.
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