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Journal of Social Work in End-of-Life & Palliative Care

My Reflection and Interpretation of Challenges Faced by the Most Vulnerable Palliative Care Patients durIng COVID-19 in Soweto, South Africa

By: Penelope Mathe – HospiceWits – Houghton – JHB – South Africa

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Progress Update: Palliative Care Development Between
2017 and 2020 in Five African Countries

Emmanuel Luyirika, M Fam Med, MPA, MB, ChBa,, Diederik Lohman, MSPH, MAa, , Zipporah Ali, MD, MPH, MPC, Mackuline Atieno, BSN, Anna Mahenge, RN, BA(SW), Paul Mmbando, MD, Esther Muinga, MD, David Musyoki, BScN, Mark Donald Mwesiga, MMS, BA, Eve Namisango, PhD, MSc, BSc, Peter Nosim, SW, Geoffrey Opio, MPHIL, Sara Pardy, BA, Aimable Ruzima, MBA, Eva Skowronska, MD, MPH, Blaise Uhagaze, MD, Joyce Zalwango, BSc, RN, and Aggrey Aluso, MA African Palliative Care Association (E.L., E.N.), Kampala, Uganda; Open Society Foundations (D.L., S.P.), New York, New York, USA; Kenya Hospices and Palliative Care Association (Z.A., M.A., E.M., D.M.), Nairobi, Kenya; Evangelical Lutheran Church in Tanzania (ELCT) (A.M., P.M., P.N.), Arusha, Tanzania; Palliative Care Association of Uganda (PCAU) (M.D.M., J.Z.), Kampala, Uganda; Open Society Initiative for East Africa (G.P., A.A.), Kampala, Uganda; Rwanda Palliative Care and Hospice Organization (A.R., B.U.), Kigali, Rwanda;
Hospice Palliative Care Association (HPCA) (E.S.), Cape Town, South Africa



Oral care: Psychosocial perspective on Palliative Care patients in South Africa.

By: Penelope Mathe (Palliative Care Social Worker, MA in Social Work)

Oral care issues are widespread with South African terminally ill patients.  It is one of the least understood and poorly handled areas of general medical care among patients and their families. In order to provide effective end-of-life care, all parties involved must be educated on the importance of meticulous oral awareness and management.

Palliative care patients who are low-income, uninsured, and have limited access to appropriate oral health care are more likely to have poor oral health. As a result, poor dental health has become a symbol of social disparity (Northridge, Kumar & Kaur, 2020).

Palliative care is a comprehensive approach to disease care and prevention that stresses contemplation of the complete person, physiologically, psychologically, socially, and spiritually (Ndiok et al, 2020). It is important to assess an individual and family using all these different domains. They should be assessed in tandem so that a person’s whole needs are met. Doing so ensures that dental care is not overlooked. It should be a continuous effort to maintain the health of the patient.

South African hospice care providers support more than 150,000 people with terminal and life-limiting conditions each year. It should be noted that 84 % of hospice care is provided in community-based settings (HPCA, 2020).  The Hospice Palliative Care Association has developed clinical guidelines for oral health in palliative care to assist practitioner and patient decisions about appropriate health care and how to provide oral health for patients (HPCA, 2012:132-154). Yet, the greatest challenge for many patients is lack of resources, especially for indigent patients who are cared for at home and don’t have the necessary resources to take care of their oral health care.

Hospices in South Africa are well-known for being charity-driven, and they raise funds through a variety of methods, including fundraisers, hospice charity shops, legacies, and hospice lotteries. They receive some statutory financing, albeit the amounts vary across South Africa (HPCA, 2020). These fundraising efforts are typically focused on obtaining opioids for patients, supporting human resource salaries, and covering the costs of rent, water, and energy for the facility. As a result, finding new ways to support the cost of oral health techniques for patients remains a challenge.

Community based palliative care patients frequently experience health inequalities.  Oral health issues can have a significant impact on a person’s physical and emotional well-being. For all patients, oral hygiene should be a component of their everyday regimen. Patients who are cared for at home by untrained family members, may ignore the need of oral care and this greatly impacts their quality of life.

The efforts which are undertaken to ensure that oral health care is typically included in the delivery of in-patient palliative care.  Most indigent home care palliative patients are expected to buy their own oral care medicines.

Terminally ill people suffer from a variety of oral difficulties as a result of their illness, therapies, and medications. Infections in the mouths of palliative care patients are commonly fungal, viral, or bacterial. These illnesses include oral cavity pain, halitosis, taste alterations, oral mucositis, candida, and, most commonly, xerostomia. These issues can lead to anorexia, as well as difficulty swallowing, breathing, and communicating if they are not addressed. (Bean, 2014; HPCA, 2012).

The majority of palliative care patients in Soweto, Johannesburg come with white plaque on the tongue, palate, inner cheek, or oral cavity floor. These are symptoms of developing immune deficiency as a result of biological disorders that influence physical well-being, or as a result of excessive stress, worry, or emotional pressure that causes the physical body to react. In advanced and impaired immune weakness, the infection can extend to the esophagus and trachea, causing peritonitis (HPCA, 2012). This can be quite detrimental effect to the patient.

The study conducted by Chandran et al. (2016) indicated that there are various psychological factors that affect oral health.  Palliative care patients are no exception to these factors. Many palliative care patients struggle with low self-esteem which results in loneliness and social disruption. Some patients become very hostile and experience stress which is mostly associated with lack of resources for day to day survival (Thomas et al., 2020; Upton, 2013).

While many seriously-ill patients with poor oral health receive no oral health care prior to death, unnecessary treatment is also common. In response to these issues, a new oral health care model is needed to better address the oral health needs of seriously ill patients. This model should be aimed at promoting comfort, maintaining oral function and improving quality of life. End-of-life oral health trajectories and stage-appropriate oral health care strategies should also be introduced to guide the care of these vulnerable individuals (Chen & Kistler, 2015).

The collaboration of the interdisciplinary team such as physician, dentists and other healthcare providers is advisable. It is important to note that most palliative care teams from the developing countries have little access to experts who can advise about dental care. Palliative Care teams can only rely on basic oral treatment such as treatment of oral thrush. This is the typical experience of most palliative care patients.

To avoid major systemic problems and increase care quality, a stage-appropriate oral health care plan should be devised, taking into account the patient’s prognosis, oral health demands, and functional reserve.

Identification of patients who require mouth care is critical in palliative care. Controlling oral diseases and discomfort can improve the comfort, dignity, and quality of life of hospice patients. Untreated, oral diseases can make swallowing, eating, communicating, and breathing difficult. The chronic dental care shortfall in this vulnerable demographic appears to have few remedies. But we have to start somewhere, including avoiding indifference and increasing understanding of dental equity in palliative care. Dentists, physicians, hospice nurses, and patient support workers must collaborate to establish, administer, and evaluate dental programs in palliative care settings.


Bean, L. 2014. Monitoring The Mouth – Oral Considerations For Hospice Patients. Date of access: 07 December 2021.

Chandran, T., Ravindranath, N.S., Raju, R., Gubbihal, R., Kousalya, P.S. & Kadanakuppe, S. 2016.  Psychological Determinants of Oral Health-A review. Int J Oral Health Med Res 2016;3(1):189-194. Date of access: 10 December 2021.

Chen, X., & Kistler, C. E. 2015. Oral health care for older adults with serious illness: when and how?. Journal of the American Geriatrics Society, 63(2), 375–378. Date of access: 08 December 2021.

HPCA Clinical Guidelines. 2012. Date of access: 08 December 2021.

HPCA. 2020. Facts and figures. Date of access: 08 December 2021.

Ndiok, A.E., Oriya, E. & Ncama, B. 2020. Holistic/Palliative Management of Patient’s Health Care and Home Situation in a Depressed Economy.

Date of access:10 December 2021.

Northridge, M. E., Kumar, A., & Kaur, R. 2020. Disparities in Access to Oral Health Care. Annual review of public health, 41, 513–535. Date of access: 08 December 2021.