Palliative Care in Resource-Constrained Settings: Lessons Learned
Palliative Care in Resource-Constrained Settings for People Living with HIV and Other Life-Threatening Illnesses: Lessons Learned From Uganda
Needs assessments for home-based care in Malawi and Uganda give important insights to the needs of people living with HIV/AIDS and their family care providers. These fall into the following categories:
- Basic day-to-day needs, such as food, soap, linen, clothes, and drugs
- Medical and nursing needs, such as primary care, tuberculosis-related care, and care for diarrhea and other symptoms
- Financial assistance
- Emotional needs, such as treatment for depression, suicidal thoughts, and worries, empathy, and security of survivors
- Spiritual needs.
In addition, family providers report respite-related needs: exhaustion and feeling overwhelmed, emotional burnout, lost opportunities, lack of information and training, poverty and lack of access to care, neglect of their own needs, and property grabbing.
In Chiang Mai, China, at the Fifth International Congress of Home and Community Care for Persons Living with HIV/AIDS (2001), we heard that good palliative care addresses the most frequently observed needs of people living with HIV/AIDS, including those related to basic treatment information, stigma, adequate nutrition, hope, coping, restoration of dignity, pain relief, and advice about herbal remedies.
Palliative Care in Uganda
The government and political leadership in Uganda have been internationally acclaimed for championing the struggle to prevent and control HIV/AIDS. However, although the commitment to HIV care and support in Uganda is strong, the pace of advancement regarding palliative care is slower than in the areas of antiretroviral therapy (ART) and prevention of mother-to-child transmission of HIV.
As in other countries, clinicians and policy makers in Uganda have misconceptions about the scope of palliative care, resulting in nonsupportive attitudes that contribute to the slow growth of palliative care services. The nonsupportive attitudes stem in part from clinicians’ inability to provide access to even basic treatments for curable HIV-related illnesses and a perception that palliative care offers their patients a lower standard of care.
Three organizations are recognized as the major providers of HIV palliative care services in Uganda. They are the Mildmay Centre, Hospice Uganda, and The AIDS Support Organization (TASO). Working with the Ministry of Health and training institutions, these organizations are spearheading the development of much-needed policies, standards of care, and training guides and are training providers and modeling HIV palliation.
Needs of Home-Based Care Clients: Malawi, 2000/p>
- Basic needs: food, drugs, soap, etc.
— Eighty-six percent of clients needed food, but only 26 percent received it. - Medical care
— Fifty percent of patients with a cough were referred for a tuberculosis diagnosis.
— Twenty percent of patients with diarrhea received oral rehydration solution. - Emotional support
— Eighty percent reported depression.
— Eighteen percent reported suicidal thoughts.
— Forty percent talked to a volunteer about their feelings or worries.
Source: Marum E, et al. Assessment of home based care services in Malawi. Uganda: Umoyo Network; 2000. Phiri et al. Care or neglect? Durban, South Africa; 2000.
Hospice Africa (Uganda)
Prior to 1993, pain and symptom control were not a major focus of facility- or home-based care in Uganda. Hospice Africa (Uganda) was founded in 1993 to champion the training of clinicians and nurses in the areas of pain and symptom control for patients with cancer and to provide services such as home care. In addition, Hospice lobbied the Ministry of Health for preservice training to take place alongside inservice training as well as for greater access to opioid analgesics, including oral morphine. In 1994 preservice training started for medical students, primarily emphasizing the assessment of and modern methods for pain control. Hospice is now providing care for a growing number of HIV/AIDS patients, and Hospice’s training program is increasingly addressing HIV primary care.
The AIDS Support Organization
The AIDS Support Organization (TASO) was founded in 1987 by a small group of people whose lives had been touched by HIV/AIDS. The new organization emerged from their vision to support each other and take back control of their own lives. The TASO model of community mobilization and engagement—what has come to be referred to as positive living—is well documented. Over the years, TASO has provided psychosocial support services (including food supplements and economic empowerment strategies) for individuals and communities of people living with HIV/AIDS. TASO is a recognized training institution for counselors and undertakes local, national, and global advocacy for HIV/AIDS care and support. The organization has integrated HIV clinical care services and is now seeking to integrate pain and symptom control and ART. Services are facility based and include limited day care and a growing outreach effort involving home care services.
The Mildmay Centre
The Mildmay Centre (TMC) began offering HIV outpatient, palliative, and rehabilitative care services in 1998 through a collaborative undertaking of the Uganda Ministry of Health, the British Department for International Development, and Mildmay International (a British charity). TMC was established to build a model for holistic HIV/AIDS care and provide opportunities for practical training and mentoring for HIV care providers. TMC offers adult and pediatric clinical care, counseling, nutrition services, physiotherapy, occupational therapy, pastoral care, and other support services for families. Noah’s Ark, a children’s waiting center, provides child care services that include meals. The Mildmay International Study Centre (MISC), located at the same site, conducts training programs for national and international care providers.
Services and Delivery Models at Mildmay International Study Centre and Jajja’s Home
- Mildmay International Study Centre
— Training: theory and practice at the Mildmay Centre - Jajja’s Home
Day care and medical and nursing care for children and adolescents, emphasizing the following services:
— Symptom control
— Drug administration
— Therapeutic feeding
— Therapeutic play and age-appropriate counseling
— School activities
— Physiotherapy
— Aromatherapy.
Jajja’s Home also offers residential rehabilitation and terminal care—day care with outreach and home care on a limited basis.
Jajja’s Home, a MISC project, is dedicated solely to children and adolescents, who are admitted to the day treatment program according to criteria that include severe and persistent symptoms, severe malnutrition, extreme social deprivation, depression, and having a caregiver in urgent need of respite. Almost all have advanced HIV disease, and many of them are terminally ill. In addition to accessing services as needed at TMC, the children in the day treatment program are given medications, have their symptoms monitored, and are given an energy-dense diet with an appropriately modified consistency. Play and recreation are emphasized within the limits of a child’s disease, and staff members are encouraged to include touch in their work with the patients. A few beds have been recently added to facilitate residential terminal care and training. Prior to admission and discharge from the program, home visits are conducted with the consent of the family. The visits help staff develop a greater understanding of the child’s home situation and social support and build a foundation for partnerships with the families. Home visits between clinic visits are limited by resource constraints, but they are important. They have provided staff with a greater awareness of the extreme poverty, food insecurity, and extreme deprivation in patients’ households.
What Has Been Achieved?
Due in large measure to the work of organizations like Mildmay Centre, Hospice Africa, and TASO, palliative care is now included in Uganda’s National Health Policy and Health Sector Strategic Plan (1999/2000) and in the country’s National Strategic Framework for Expansion of HIV/AIDS Care and Support in Uganda, 2001/2–2006/7 (MoH, Republic of Uganda, 2001). The development of Uganda’s national cancer policy is in process, as are efforts to create legislation that broadens the base of people who may prescribe opioid analgesics. The development of a comprehensive palliative care preservice curriculum is also in process.
Services and Delivery Models at the Mildmay Centre, Uganda, 1998
- Adult and pediatric clinical care (opportunistic infections, prophylaxis, symptom control, antiretroviral therapy)
- Nutrition counseling
- Physiotherapy
- Occupational therapy
- Pastoral care
- Ongoing counseling (dual diagnosis, adherence, bereavement)
- Children’s waiting center (Noah’s Ark)
- Practical training/clinical attachments
- Training for family caregivers on a limited scale
- Outpatient facility-based care.
Constraints and Challenges
TASO’s, Hospice’s, and Mildmay’s services are currently reaching only a tiny fraction of the patients who need them. Most patients are from urban settings, because most outreach providers limit admission to patients who reside within 15 to 20 kilometers of the organization’s primary site. A team with other full-time responsibilities and limited access to transportation can conduct only so many home visits. Basic supplies for care in homes and facilities are limited or nonexistent. The short period of time available for staff to interact with families and patients does not allow them to give them the information they need, ask the necessary questions, or discuss the range of available community services. Moreover, the limited contact with patients does not allow staff to monitor the effectiveness of any symptom-control measures undertaken.
Access to palliative care is particularly an issue for children. To increase access for children, Mildmay offers free services and has a dedicated clinic day for children and their families. Attendance on these days currently far exceeds the institutional capacity to provide the range of services needed in a timely manner.
At Mildmay’s multidisciplinary services program, a patient may need to see as many as five different providers, highlighting the need for multiskilled providers, especially in such high-demand services as basic counseling and nutrition. Because of the inadequate linkages between palliative care services and primary care centers and the limited participation of the public sector, palliative care capacity in the public sector has failed to respond to the urgency of the needs.
The original missions of the individual participating organizations have affected and delayed their evolution into comprehensive HIV/AIDS palliative care service providers. TASO has only recently incorporated pain and symptom control into its services. On a more positive note, however, the changing profile of patients referred to Hospice has prompted training programs to encompass primary HIV care, including treatment of opportunistic infections (Merriman, 2002). From the outset, Mildmay has provided onsite holistic care for HIV/AIDS patients and has offered training in this area. When Mildmay recognized the extreme inequities in access to services for children, it facilitated services specifically for children and expanded its pediatric care services.
Many families feel unable to meet the myriad needs of their loved ones, or they may not have received the positive reinforcement they need from providers that they are indeed providing good care. As a result, very sick patients who would have benefited from palliative care in the home are often brought to outpatient facilities, or terminally ill patients who have been accessing care in their homes may be admitted to hospitals. Poor communication between the health care sector and communities makes it difficult to facilitate an expanded response to HIV/AIDS at the local level.
Clinicians are often reluctant or may not have the skills to discuss terminal care or control symptoms with families. They also may have misconceptions or strongly held beliefs against use of opioid analgesics, particularly for children. In addition, families may have difficulty recognizing when aggressive care should cease.
Recommendations for Palliative Care in Uganda
- Bridge the gap between institutions and communities, with the goal of attaining synergistic partnerships and a continuum of care.
- Build the capacity of clinicians, families, and communities to care for HIV-infected and other chronically and terminally ill patients.
- Create a palliative care infrastructure to enhance the effectiveness of antiretroviral therapy (ART). Many patients will not have access to ART because of ineligibility or advanced disease, or they will need sustained support and encouragement to adhere to complex regimens with many adverse events.
- Palliative care services for children will remain nonexistent unless these services are set up explicitly for children.
Poverty and stigma around HIV/AIDS significantly compromise the quality of care for people living with HIV/AIDS. Except for perhaps TASO, the participating organizations’ outreach services have not yet realized the enormous potential of home care teams to contribute to HIV prevention at the family and community level.
What Opportunities Exist?
With support from the U.S. Centers for Disease Control and Prevention, The Mildmay Centre and the Mildmay International Study Centre have the opportunity to partner with health centers to build capacity for children’s HIV primary and palliative care. The opening of a residential unit will ensure pre- and inservice training opportunities in the care of terminally ill children. The increasingly close partnerships among AIDS support organizations, nongovernmental organizations, community-based organizations, groups of organized traditional healers, and the public and private sector are bridging the gap between communities and facilities providing institutional and palliative outreach services.
Lessons Learned and Recommendations
In resource-constrained settings, HIV/AIDS, rather than cancer, has made palliative care services imperative, particularly for children.
AIDS support organizations; nongovernmental organizations; and private, nonprofit organizations have successfully encouraged government to respond to the need for palliative care services through
- adjusting policy;
- setting in motion the necessary machinery to broaden patients’ access to needed medicines and supplies, including oral morphine;
- providing the framework for needed human capacity development; and
- committing needed resources.
Community dialogue about support for home-based care for HIV/AIDS patients is not where it should be. We need to bridge the gap between institutions and communities to ultimately attain synergistic partnerships and a continuum of care for patients.
Patient overcrowding and a lack of clinicians’ skills are major hindrances to the practice of palliative care in health care facilities. Home caregivers’ lack of information, skills, and supplies also restrict care for patients. Capacity building is needed for clinicians, families, and communities to care for HIV-infected and other chronically and terminally ill patients.
Infrastructure for palliative care can only enhance the access to and utilization of ART, and it is indeed a basic requirement. The synergy between ART and palliative care services is well demonstrated at the Mildmay Centre. Many patients accessing ART in Uganda have advanced HIV disease; for them, good symptom control can make the difference between benefiting from ART or abandoning it altogether.
Palliative care services in Uganda are desperately needed on a much larger scale than is currently available. Using the lessons we have learned to harness the enormous potential of communities and claim the resources currently and potentially available for HIV care and treatment, palliative care services can be expanded. Palliative care services should be available for adults and children living with HIV disease and their families, from diagnosis through death and bereavement, and in a variety of settings.
Acknowledgments
The author thanks her colleagues in Uganda—The Mildmay Centre, Hospice Africa (Uganda), and TASO; the Ugandan Ministry of Health; and Family Health International, Arlington, Virginia, who through their daily work have contributed to this article.
Bibliography
Boswell D, Banda I. Home and community care in Zambia: an external evaluation of the AIDS integrated programme Catholic Diocese of Ndola. Arlington, VA: Family Health International; 2002.
Kaleeba N, Kalibala S, Kaseje M, et al. Participatory evaluation of counselling, medical and social services of The AIDS Support Organization (TASO) in Uganda. AIDS Care. 1997;9(1):13-26.
Malawi home based care and support for orphans and vulnerable children. Draft report. Arlington, VA: Family Health International; 2002. Available at http://www.fhi.org.
Marum E, Epino H, Chimwaza M, et al. Assessment of HIV care and support: a strategic framework. Arlington, VA: Family Health International; 2002.
Marum E, et al. Assessment of home based care services in Malawi. Uganda: Umoyo Network; 2000.
Merriman A. Palliative medicine. Pain and symptom control in the cancer and/or HIV/AIDS patient in Uganda and other African countries: a book for health professionals. 3d ed. Hospice (Africa) Uganda; 2002.
Phiri, et al. Care or neglect? Durban, South Africa; 2000.
Proceedings of the Fifth International Conference on Home and Community Care for Persons Living With HIV/AIDS, Chang Mai, Thailand, Dec. 2001.
Ssanyu-Sseruma W. Antiretrovirals: magical or minefield? SAFAIDS. 2002.
Uganda Ministry of Health. The national strategic framework for expansion of HIV/AIDS care and support in Uganda, 2001/2-2006/7. Uganda: Ministry of Health; 2001.
Weidle P, et al. Assessment of a pilot antiretroviral drug therapy programme in Uganda: patients’ response, survival, and drug resistance. Lancet. 2002;360(9326):34-40.
