Cape Town, South Africa
Fellow Since 2008
The ComaCARE Trust
This profile was prepared when Janice Webster was elected to the Ashoka Fellowship in 2008.
Jan Webster has developed a new model for hospital care that is more attentive to the needs and rights of patients and their families, and more supportive of the responsibilities and work of overburdened nurses and other highly trained hospital staff.
The New Idea
Having observed that patients in altered states of consciousness often suffer from misdiagnosis, neglect, and abuse in South Africa’s public hospitals, Jan has devised a new model of hospital care for comatose patients that heed their rights and needs as well as those of their family members. Jan’s model also markedly improves the working conditions and job satisfaction of severely overstretched nursing staff and other hospital personnel. In 2005, Jan founded a citizen organization, ComaCARE Trust, with the aim of implementing her model., today ComaCARE is based in a neurosurgery ward and neuro-ICU in the Groote Schuur Hospital—a major public hospital in Cape Town that serves as the teaching hospital for the University of Cape Town’s Faculty of Health Sciences. Jan and her ComaCARE team engage in four types of activity—Care, Advocacy, Research and Education/training (CARE). Jan has introduced a new protocol for interacting with coma patients that trains neurosurgery staff, nurses, family members, and volunteers to identify small signs of brain activity and to cultivate those signs into signals for communication. Jan and her colleagues also attend to the generally overlooked needs of family members of coma patients—a task in which she draws on the services of carefully trained local volunteers who speak indigenous languages and can thus pick up and relate to the nuances of the ethnic background of patients and their families. Such use of volunteers in the care of critically ill patients in acute neuro settings and their families is unprecedented in Southern Africa. As one component of a broader advocacy initiative, Jan has also set up a multi-disciplinary out-patients’ clinic to provide patients and their families with medical information pertaining to coma in their local languages and to expedite their access to social service grants. This “one stop shop” clinic is also the first of its kind in Southern Africa. ComaCARE offers an expanding array of training and education initiatives. In addition to training volunteers, Jan has organized three training modules for nurses working in neurosurgery wards and neuro-ICUs for which she is seeking formal accreditation from the Health Education and Training Authority (SETA) and for registered nurses through the South African Nursing Council ((SANC) She is also providing informal training for medical staff to help them become more aware of coma patients’ ability to communicate, and lectures on lessons learned in the ComaCARE initiative in public health courses for second- and fourth-year medical students at the University of Cape Town. Jan and her colleagues are also actively engaged in ward-based research to assess the effectiveness of their approaches in caring for comatose patients—both to provide assurance that the rigorous ethical standards that govern patient care are being followed, and to construct a firm basis for gaining the approval of the National Departments of Health, Social Services, and Justice for new protocols for coma and post-coma care. This will facilitate the spread of ComaCARE’s approach across Southern Africa and across the African continent more broadly. With the latter aim in view, ComaCare has developed a website (w.w.w.comacare.com), has been represented at international pediatric neurosurgery conferences and aims to host a Pan-African Conference on coma care in 2011.
The healthcare sector in South Africa is ill-equipped to cope effectively with the country’s burgeoning demand for its services. Once reserved for the use of a small minority of the country’s population, public hospitals in South Africa are now faced with a huge upsurge in patient numbers that is putting immense strains on their facilities and their medical and nursing staffs. These problems are system-wide but are particularly acute in intensive care units and trauma wards, including those treating comatose and coma-recovering patients requiring specialized care.For many reasons, including inadequately funded healthcare budgets and a longstanding and continuing “brain drain” of doctors, nurses, and other highly-skilled professionals, there are growing system-wide shortages of appropriately trained and experienced medical personnel in South Africa’s public hospitals. Those shortages are particularly evident in highly specialized fields, including those dealing with brain-injured and comatose patients. And as a consequence of those deficiencies, very little funding is available for “non-essential” purposes, including patient and family counseling and “postponable” training of medical and nursing staff.Moreover, in the field in which Jan and her colleagues are working, these difficulties are compounded by a pervasive lack of understanding of several factors affecting the special care and attention needed by comatose patients and their families. Most patients who enter the hospital in a comatose state—the majority of whom are poor black men—are victims of alcohol or drug abuse, stroke, road accidents, or violent crimes. Five percent of such patients remain unidentified, since there is no mechanism linking missing person reports to unidentified, newly admitted hospital patients, and those particularly unfortunate “John Doe” patients do not receive healing-inducing visits from loved ones and often die without socially acceptable burials. Another serious problem results from the fact that many such patients (some 40 percent according to a recent study in the U.K.) are misdiagnosed. Because comatose patients cannot communicate (at least in the usual ways), it is generally assumed that they have suffered very serious brain damage and have little chance of surviving—assumptions that all too often result in the denial of rehabilitative care that could tip the balance between recovery and death. In high-income societies, ready access to advanced technology (including MRIs and CAT Scans) permits those assumptions to be tested. In South Africa, however, where very few hospitals possess such diagnostic tools, close observation and skilled attempts to communicate with such patients and recognize small indications of consciousness are vitally important for determining the existence of brain activity and the patients’ prospects for recovery. Finally, substantial cultural and language gulfs often severely complicate communication in hospital settings. Most senior medical and nursing personnel are white men or women whose first language is English or Afrikaans, while a substantial majority of hospital patients (and their families) are black South Africans, whose first language is Xhosa, Zulu, or another African language. For many people working in the health and hospital care fields in South Africa, this array of problems is discouragingly daunting. For people like Jan, however, it presents interesting, challenging, and, indeed, compelling opportunities for innovation and positive change.
Since 2005, when ComaCare was founded, Jan and a growing number of colleagues have been working, initially as volunteers and now as salaried ComaCARE staff, to transform the hospital experiences of comatose patients and their families. Employing the four-pronged strategy noted above—care, advocacy, research and education/ training—Jan has already achieved several important improvements in the neurosurgery ward and neuro-ICU unit in the Groote Schuur Hospital, where the Coma-CARE team is based. Those changes are being duly noted by medical and nursing staff and senior administrators in other parts of the Hospital, and initial steps to replicate them are now underway. Jan’s work at Groote Schuur is also attracting the attention of senior hospital staff in other parts of South Africa and elsewhere on the African continent. Jan’s care strategies address several pressing needs. In an effort to combat the “invisibility” of comatose patients and to improve their recovery chances, Jan trains doctors, nurses, volunteers, and family members of patients in techniques for developing new channels of communication between patients and caregivers. The bedside method that she prescribes, which has been found effective resulting in a decrease use of restraints and less patient and family frustration and distress. The ComaCARE “A BIT OF CARE” method, asks caregivers to acknowledge the atmosphere or environment, sit close to the patient, introduce themselves, and try to match their breathing patterns to that of the patient before attempting spoken communication. It also advises caregivers to repeat, or duplicate, any patient responses that they detect, to make patients aware that they are communicating. It does not employ arousal techniques that attempt to shock the patient out of a comatose state. Jan’s care and advocacy strategies also address important needs of patients’ families. ComaCARE has set up a family counseling room in Groote Schuur Hospital that support family members at each stage of their loved ones’ long journeys towards recovery or dying process. ComaCARE provides each family with a support packet containing information, in their preferred language, on several topics—the hospital, brain injury and coma, living wills and death, and resources for financial and spiritual support. If necessary to assure family visits for coma patients, ComaCARE also provides “visiting grants” that cover the transportation costs associated with such visits. As noted above, Jan has also established a “one-stop shop” outpatients’ clinic to help families gain quick access to disability grants for which they are eligible.Jan’s training/education strategy also has several components. Jan presents regular lectures on lessons learned in the ComaCARE initiative in public health courses for second- and fourth-year medical students at the University of Cape Town. Finally, in 2009 she will begin offering short courses for ambulance and emergency medical response personnel to enable then to identify signs of brain trauma and provide immediate treatment for such injuries. Since ComaCARE was launched three years ago, Jan and her colleagues have made considerable progress in developing new initiatives to address the needs of comatose patients and their family members in Groote Schuur Hospital. There is rapidly mounting evidence that Jan’s innovations are working. Nurses in the neurosurgery ward and neuro-ICU unit report that they are better equipped to address the special needs of comatose patients and that they are experiencing less stress and burnout. Jan’s volunteer program is facilitating communication across cultural and language divides, and it is opening up new employment opportunities in health and related fields for many of its participants. Jan is seeking funding for an emergency hotline with a centralized database that is accessible by police and emergency response personnel will soon be in operation to help connect “John Doe” victims of road accidents and other traumatic injuries with their family members. ComaCARE’s family counseling center and outpatient clinic are making important contributions to the peace of mind of family members of coma patients. And Jan and her colleagues have also mounted a growing array of training and research initiatives that will support the extension of many of their initiatives to dimensions of hospital care well beyond coma care and to other parts of South Africa and elsewhere in Africa. ComaCARE is beginning to attract the attention and support of both domestic and foreign funding agencies and recently received a grant from the Norwegian Center for Human Rights. Jan also received funding from a private trust in South Africa to facilitate a Pan-African Conference on coma care that Jan will host in 2011.
The youngest of three girls, Janice Webster was born and raised in Scotland. When Jan was 16, her mother died, and, three years later, she cared for her father until he was hospitalized in an unconscious state and died. Soon thereafter, Jan left school and traveled to South Africa, where she worked as a volunteer in a home for children. After returning to Scotland, she completed an honors degree in the social sciences at the University of Aberdeen in 1980, and studied occupational therapy at the Grampian School of Occupational Therapy.Jan then joined the staff of Oxfam, U.K., in which she held a series of posts culminating in a three-year appointment (1986 to 88) as Deputy Regional Representative for Southern Africa. At the conclusion of the latter assignment, Jan left Oxfam to accept the post of National Coordinator of the Namibia Development Trust, which she transformed from a funding conduit for the European Union into a Namibian citizen sector development organization. In 1991, having trained and transferred leadership of the Trust to a Namibian woman, she returned to South Africa, which she had first visited some 15 years earlier.In South Africa, before founding ComaCARE Trust in 2005, Jan worked for 14 years as an organization development consultant for scores of citizen sector organizations and Government departments, mainly in the service delivery, health, and human rights sectors. In that role, in which she found her “gift for asking awkward questions” in high demand, she worked on a broad range of issues relevant her current work in ComaCARE including strategic planning, fundraising and organizational sustainability, and race and gender diversity processes. In 2002 Jan was awarded a full scholarship to enroll in a course in process oriented psychology at the Process Work Center in Portland, Oregon, where—from a wide range of programs offered—she decided to focus exclusively on coma care.Throughout her life, Jan has championed the rights and causes of marginalized and severely disadvantaged people, and in 2004, in a gang ridden township near Cape Town, she organized a “Tooth Commission” to curb an abusive “tooth removal” practice and restore the smiles of girls whom it victimized. (The practice, which is quite common in some communities in the Western Cape, involves the removal of the two to four front teeth of girls and young women, with the supposed aim of making them more appealing to men and more ingratiating sexual partners.) Jan’s decision to devote her full energies to improving the care of comatose patients and hospital care more broadly in Southern Africa, can be traced in part to her studies at the Process Work Center in Portland. Her choices are also a result of two earlier personal experiences—caring for her sick father, during which she became acutely aware of the stress of caring for and being unable to communicate with an unconscious patient, and a similar experience three years later, when one of her sisters acquired a viral infection in her brain stem and fell into a coma for three months. The founding of ComaCARE Trust in 2005, Jan reports, was also directly precipitated by international news coverage of the Terri Schiavo coma case where she was saddened by the polarization of the family, partners, friends and care givers.“At ComaCARE we stand for all parties as they all have an important part to play in the recovery or dying process of a coma patient. Each party needs relationship care. Coma patients have travelled further than most of us into an altered state of consciousness—why would we not listen to them as the experts?—they are teaching us about attending to consciousness in a mindful way.”