Holistic community-based palliative care is the kind of care that improves the quality of life of people living with severe or chronic illnesses and their families, by supporting people with their medical needs as well as beyond those medical needs.  This involves management of pain and physical symptoms, emotional distress, social challenges, and spiritual concerns. Community-based palliative care calls upon our collective capacity for compassion, dignity, and solidarity. However, in different local contexts, the burden of caregiving has disproportionately fallen on women, who shoulder most unpaid care work within households and communities. Social constructs and gender norms reinforce unequal care burden and limit men’s role in palliative care.  

Both women and men have the unequivocal right to receive the same quality of community-based palliative care. However, research indicates that women’s pain is more likely to be under-reported in different contexts and that many women face compounded vulnerabilities such as financial limitations, decision-making power, and inadequate care. Some studies also showed that women are expected to continue caregiving roles even while ill.  

The Centre for Gender Equity (CGE) and Institute of Global Health Research (IGHER) at the University of Global Health Equity states that this must change, and that this change begins with how we understand and redistribute care responsibilities. 

Men as Active Caregivers in Palliative Care  

The gaps in male involvement in community-based palliative care can place enormous emotional, physical, and economic strain on women caregivers. There is a growing recognition that the well-being of families and communities is sustained when all members, regardless of their sex, contribute meaningfully to caregiving. We call on men to embrace this ethic, particularly in the context of palliative care. 

Men play a vital role in palliative care, as fathers, partners, sons, brothers, friends, and health professionals. When men are present, engaged, and emotionally available in caregiving, the quality of care improves, caregiver burnout among women is reduced, and the person receiving care experiences greater dignity.  

We therefore call upon men to: 

•   Be present: – be physically and emotionally present for persons receiving palliative care, including family members, partners, and community members in need. 

•   Share the caregiving load by taking active responsibility for tasks such as administering medication, providing personal care, accompanying patients to health facilities, and managing household needs. 

•   Challenge harmful masculinity norms that promote the notion that caregiving is “women’s work”.  

•   Seek support and engage with palliative care teams, especially community health workers, religious leaders, counsellors, and other stakeholders in the community to gain the skills and emotional support needed to provide sustained, compassionate care. 

•   Advocate within their communities and use their social influence to encourage other men to participate actively in caregiving. 

The Centre for Gender Equity and IGHER want to outline the following rights of women and men in receiving palliative care: 

• Equitable access to pain relief, including medications where clinically appropriate, without being subjected to dismissive or biased assessments. 
• The right to be heard about their accounts of their symptoms, fears, and preferences. 
• The right to be included in decisions about their own care and treatment. 
• The right to rest and to receive care. Especially women and men who are ill must be relieved of caregiving and domestic responsibilities so they can be cared for. 

Collective Action  

Gender equity in community-based palliative care should be the concern of health systems, policymakers, educational institutions, community leaders, and individuals, all of whom have a role to play in dismantling the structural and cultural barriers that produce gendered inequities in care. 

The Centre for Gender Equity and IGHER encourage all stakeholders across Rwanda to integrate a gender lens into palliative care policy, training, and practice. We encourage communities to hold one another accountable to the values of compassion, dignity, and justice that make palliative care a medical as well as moral service. 

Issued by the Centre for Gender Equity (CGE) and Institute of Global Health Research (IGHER)