Too young to die,too silenced to love: Sexual and reproductive health of young adults receiving palliative and end-of-life care in Ghana

Abstract

Young adults living with chronic noncommunicable diseases (NCDs) in Ghana face unique challenges that extend beyond physical and psychosocial suffering to include unmet sexual and reproductive health (SRH) needs. Yet, SRH remains a neglected aspect of palliative and end-of-life (EoL) care in the country. This article explores why SRH needs are rarely discussed in palliative and EoL care settings. It also examines the factors contributing to the high-unmet need for SRH needs, the repercussions, and possible actions that can be implemented to elevate SRH as a core dimension of palliative and EoL care service provision in the Ghanaian/African setting. The article argues that false assumptions, cultural barriers, policy gaps, and inadequate training contribute to the neglect of SRH in palliative and EoL care settings. The article identifies the following as strategies to surmount the identified barriers: integrating SRH as a core component of palliative care education in Ghana, developing a guideline or a protocol for assessing and handling SRH needs of young adults living with chronic NCDs, and adopting a person-centred approach when communicating about SRH matters. The article further highlights the potential of adopting the PLISSIT model as a practical framework to facilitate sensitive, structured discussions on sexuality in palliative settings.

Introduction

Globally, there is an increasing incidence and prevalence of noncommunicable diseases (NCDs), including hypertension, cancers, chronic respiratory disease, chronic kidney disorders, stroke, and diabetes, among others.^1,2 This increasing trend of NCDs among young adults in Ghana raise concerns about the need for palliative care. Chong et al. ¹ project that between 2025 and 2050, there will be a 90% increase in the prevalence of cardiovascular diseases worldwide. Another study has projected a steady increase in the incidence of lung cancer in most countries across the world. ³ Low- and middle-income countries like Ghana are not insulated from the burden of chronic NCDs. One study estimated an NCD prevalence of 26.7% among adults in Ghana. ⁴ Similarly, there is evidence suggesting an increasing trend in obesity (a known risk factor for NCDs) among young adults (i.e., 18–49 years) in Ghana. ⁵

Most NCDs (e.g., cancer, diabetes, cardiovascular diseases) are chronic in nature; as such, young adults living with these conditions require healthcare that improves their quality of life throughout the continuum of care. That is exactly what palliative care and end-of-life (EoL) care are expected to do. ⁶ Despite the relevance of palliative and EoL care to young adults living with chronic NCDs, particularly those at the terminal stage of disease trajectory, there is a high-unmet need for palliative care services.^7,8 For example, Ghana falls under bloc of 65 countries with isolated palliative care services. ⁸

Even in settings where palliative needs have been explored, the focus has predominantly been on physical, psychosocial, spiritual, and educational domains.^7,9 This limited scope leaves a crucial aspect of holistic care unaddressed: the sexual and reproductive health (SRH) needs of young adults living with chronic, life-limiting illnesses. It must be noted that young adulthood is a time of peak sexual exploration, relationship formation, and family planning.^10,11 When faced with the diagnosis and progression of a chronic or terminal NCD, young adults encounter unique painful challenges regarding their identity, fertility, sexual function, and intimate relationships. Thus, the intersection of terminal illness and the critical developmental stage of establishing sexual and reproductive autonomy highlights a profound and often silenced area of need. Consequently, the contribution of this article lies in reframing SRH as a core dimension rather than peripheral dimension of palliative care, centring young adults in an African context, and integrating cultural, policy, and practice-level determinants within a single analytical narrative. It explores why SRH needs are rarely discussed in palliative and EoL care settings. The article examines the factors contributing to the high-unmet need for palliative care, the repercussions, and possible actions than can be implemented to elevate SRH as a core dimension of palliative and EoL care service provision in the Ghanaian/African setting.

SRH services in palliative and EoL settings

The World Health Organisation defines SRH as ‘a state of physical, emotional, mental and social well-being in relation to sexuality; it is not merely the absence of disease, dysfunction or infirmity’. ¹² This means that it goes beyond just sex to include pregnancy, relationships, sexuality, family planning and contraception, and access to safe abortion services. ¹³ By extension, it includes sexual rights which encompasses an individual’s right to marry, right to form a family and enter into marriage with the free and full consent of the intending spouses, and the right to decide the number and spacing of one’s children. This makes SRH a fundamental human right to all people, including young adults living with chronic NCDs. However, the existing evidence suggest that among the general population of young adults in Ghana, access to SRH services is nuanced and characterised with many complexities.

The general population of young adults in Ghana are documented to have a high unmet need for contraception. ¹⁴ Also, young people frequently report encountering unfriendly or negative attitudes from health service providers, coupled with a lack of privacy and confidentiality in health facility environments. ¹⁵ This fear of judgement or disclosure discourages service uptake. For young adults living with chronic NCDs who require palliative and EoL care, the challenges to SRH are profoundly compounded and distinctly different from the general population.

With advancement in treatment and science, survivorship for many chronic NCDs is increasing. While this has allowed young adults to live longer with their conditions, it also presents unique challenges as they adjust to altered bodies and future aspirations. For instance, treatment interventions sometimes come with physical side effects such as hair loss, as in the case of chemotherapy. ¹⁶ Other physical side effects such as weight loss or weight gain, amputation, erectile dysfunction compound to adversely impact the self-esteem and body image of the young adult navigating through the disease trajectory. ¹⁷ Another study has shown that individuals receiving palliative care services report a lower sexual well-being score. ¹⁸

Beyond the physical and psychological dimensions, chronic NCDs in palliative care settings reconfigures relational and social dynamics. Young adulthood is typically a life stage for forming intimate partnerships, exploring sexual identity, and establishing families. ¹⁷ Yet, the diagnosis of a chronic, life-limiting illness can destabilise these trajectories. Partners of persons living with chronic NCDs often assume the dual role of intimate companion and caregiver. This situation results in role strain and relationship tension. In such situations, caregiver burden may overshadow intimacy, and partners may deprioritise sexual needs in favour of medical or caregiving responsibilities. ¹⁹ For some young adults, chronic NCDs fosters social isolation, diminished dating opportunities, or fear of disclosing their health status to potential partners, which complicates their capacity to build fulfilling SRH lives.

It is also important to acknowledge that SRH needs also vary substantially by disease type and treatment trajectory. For example, young adults undergoing chemotherapy for cancer may face concerns related to fertility preservation, sexual dysfunction, and premature menopause, whereas those living with advanced heart failure or chronic kidney disease may experience fatigue, altered libido, and relationship strain without direct fertility-related risks. Failure to differentiate these needs risks a one-size-fits-all approach that inadequately responds to disease-specific realities.

Despite the unique SRH needs of young adults living with chronic NCDs, these needs are largely overlooked in palliative and EoL care service delivery in Ghana. Currently, there is no exclusive policy on palliative and EoL care service delivery in the country. There is the National Strategy for Cancer Control (NSCC) that provides some guidelines for palliative and EoL service delivery. ²⁰ However, the NSCC does not provide any specific guidelines for how to address SRH needs in palliative and EoL settings. Similarly, Ghana has developed SRH-specific policies, such as the National Reproductive Health Service Policy and Standards (NRHSPS) and the Adolescent Health Service Policy and Strategy (AHSPS; 2016–2020), which outline comprehensive approaches to reproductive health service provision.^21,22 Yet, none of these policies provide any guidelines for guaranteeing the SRH rights of persons living with chronic NCDs in palliative care settings. This policy gap reflects a broader neglect of SRH within palliative and EoL care discourses and raises critical questions about why sexuality and reproduction are consistently deprioritised in the care of individuals facing life-limiting illnesses. The next section interrogates the reasons for the neglect of and unmet SRH needs in Ghana’s palliative and EoL setting.

Contributing factors to unmet SRH needs in palliative and EoL settings

Palliative and EoL care are generally misinterpreted as being synonymous to death. Even among health professionals, colleagues providing palliative care services are described as ‘angels of death’. ²⁰ Therefore, there is a general misconception of palliative and EoL care. The matter is worse for young adults living with chronic NCDs. The assumption among health professionals, the family of the individual and the community is that sexuality and SRH are not important matters in this state. One study highlights health professional’s low perception about the importance of discussing sexuality and SRH needs as a major contributor to the neglect of SRH issues in palliative and EoL care settings. ²³ In other words, health professionals extend their bias to the individual receiving care. This assumption is often grounded in the belief that survival, pain management, and symptom control should take precedence over broader dimensions of well-being. Consequently, issues of intimacy, fertility, family planning, or sexual identity are deprioritised or dismissed altogether.

Another factor contributing to the neglect of SRH issues in Ghana’s palliative and EoL care setting is the culture. Ghana is an ethnically diverse country, yet each tribe/ethnicity shares the common character of conservativeness. This makes it difficult to openly initiate conversations about key SRH needs such as family planning, intimacy, abortion services. ¹⁵ As stated before, health professionals embody the bias that young adults receiving palliative and EoL care services do not need to bother themselves with SRH issues ²³ ; and so, the Ghanaian culture makes it embarrassing for the patient to voice this need, while making it culturally convenient for health professionals to completely avoid such conversations. These challenges are further intensified for lesbian, gay, transgender, queer, and intersex (LGBTQIA+) individuals, who experience compounded stigma related to both sexual identity and life-limiting illness. In the Ghanaian context, where non-heterosexual identities are highly stigmatised, LGBTQIA+ young adults receiving palliative care may avoid disclosure of both identity and SRH concerns, resulting in invisibility within care settings.

As the saying goes, ‘You can only give what you have’. However, there is a significant professional training gap in palliative and EoL care. Palliative care is primarily introduced in undergraduate medical training in Ghana, while structured, formal training remains limited or absent for many nurses and allied health professionals who constitute key members of multidisciplinary palliative care teams. The scope of training remains limited, with a similar emphasis placed primarily on pain management, symptom control, and psychosocial support, but not SRH. This lack of professionals training results in role confusion as health professionals are in a dilemma as to who to champion SRH conversations.^23,24

The lack of clear guidelines and protocols on providing respectful SRH services to young adults receiving palliative and EoL care is a challenge (Table 1). As I have initially stated, Ghana has the NSCC, NRHSPS, and the AHSPS^20–22; yet, none of these policies provide any guidance on how to provide SRH services in a palliative care context. Instead, SRH and palliative care are treated as separate domains of health policy, creating a disconnect that leaves the unique needs of young adults with chronic NCDs unacknowledged. This policy gap leaves service delivery dependent on individual provider discretion. What this implies is that, health professionals who feel embarrassed or ashamed to initiate such conversations will never assess the SRH needs of the care receiver, thus, exacerbating the unmet need for SRH services among this population.

Table 1.

Socio-ecological interrogation of unmet needs for SRH services in palliative and EoL care settings in Ghana.

Socio-ecological level	Key barriers identified in Ghana	Implications for SRH in palliative and EoL care	Actionable solutions
Individual level (patients)	■ Patients’ limited awareness of SRH rights in palliative care ■ Fear of judgement ■ Internalised stigma	Young adults suppress SRH concerns related to intimacy, fertility, and identity, leading to unmet needs and reduced quality of life	■ Incorporate routine SRH needs assessment into palliative consultations ■ Provide age appropriate, non-judgemental information on sexuality, fertility, and relationship ■ Normalise SRH discussions as part of holistic care
	■ Health providers’ low perceived relevance of SRH in terminal illness ■ Discomfort initiating SRH discussions ■ Inadequate training and confidence	Providers avoid or defer SRH conversations, reinforcing silence and neglect	■ Integrate SRH competencies into pre-service and in-service palliative care training ■ Use structured tools such as PLISSIT to guide discussions ■ Include SRH assessment prompts in clinical documentation
Interpersonal level	■ Caregiver prioritisation of survival and symptom control over intimacy ■ Cultural discomfort discussing sexuality	SRH needs are actively or passively suppressed by caregivers, especially for unmarried, young, or female patients	■ Provide caregiver education on SRH as a legitimate component of well-being ■ Include caregivers in counselling sessions where appropriate ■ Emphasise respect for patient autonomy and privacy
Community and institutional level	■ Strong cultural conservatism around sexuality ■ Stigma related to serious illness and sexual expression ■ Marginalisation of LGBTQIA+ identities	Reinforces silence, discourages disclosure, and disproportionately affects already marginalised groups	■ Community sensitisation through public health messaging ■ Explicitly acknowledge sexual diversity within care principles
	■ Absence of standard protocols for SRH in palliative care	SRH care becomes discretionary and dependent on individual provider attitudes	■ Develop facility-level SRH assessment guidelines within palliative care services ■ Clarify SRH roles within multidisciplinary teams ■ Establish referral pathways to specialised SRH services
Policy level	■ Fragmented policy landscape separating SRH and palliative care ■ Cancer focused palliative policies	Majority of patients needing palliative care lack policy protection for SRH needs	■ Integrate SRH explicitly into national palliative care frameworks ■ Expand palliative care policies beyond cancer ■ Align SRH policies to include persons living with life-limiting conditions
	■ Limited Ghanaian data on SRH in palliative care ■ Absence of disease-specific and population-specific evidence	Weak empirical basis for policy prioritisation and programme design	■ Invest in mixed methods research on SRH needs across different life-limiting conditions ■ nclude young adults, non-cancer populations, and LGBTQIA+ persons in future studies

EoL, end-of-life; SRH, sexual and reproductive health.

Call to action

The current gaps in professional training mean that many providers in Ghana are ill-equipped to address SRH concerns within palliative care. However, integrating SRH into pre-service curricula for medical, nursing, and allied health professionals, future practitioners provide an opportunity to develop their knowledge, sensitivity, and confidence required to engage with patients on these issues. This integration would likely reduce the feelings of embarrassment that the conservative Ghanaian culture attaches to sexuality and SRH discussions. Related to this proposition is the point that it is about time Ghana developed a clear guideline or protocol to facilitate health professionals to effectively assess and meet the SRH needs of young adults living with chronic NCDs. Such guidelines should outline roles within multidisciplinary teams, establish confidentiality standards, and include referral pathways to specialised SRH services when needed.

To ensure that SRH needs are not neglected in the future, health professionals would have to adopt a person-centred approach when communicating about the sexuality and related matters of the patient. Practically, this can include approaching the SRH issues from a non-judgemental view. As Leung et al. posit, ²⁵ it is advisable for health professionals to come from a place of curiosity when asking questions to assess the SRH needs of patients. This curiosity, together with paying attention to detail, can encourage the care receiver to open up and share their concerns, fears, and expectations about their sexuality as they journey through the disease trajectory. Adopting a person-centred approach also means engaging with the family or caregivers of the patient. Such engagement must educate the caregiver and encourage them to respect the SRH needs and concerns of their relative(s).

Models such as Annon’s PLISSIT model can be adapted to the Ghanaian context to meet the SRH needs of young adults receiving palliative and EoL care. PLISSIT stands for permission (P), limited information (LI), specific suggestions (SS), and intensive therapy (IT). In the PLISSIT model, the ‘P’ for permission involves giving patients explicit permission to discuss their sexuality and SRH needs. ¹¹ Once health professionals acknowledge the importance of intimacy, sexuality, and other SRH matters, and open the floor for such conversations, young adults receiving palliative and EoL care will be motivated to voice their concerns without fear of judgement. The ‘LI’ in the model is when health providers must offer targeted and factual information related to SRH issues that may arise from illness or treatment. For example, during palliative care sessions, individuals undergoing chemotherapy can be informed about potential impacts on fertility, sexual functioning, or physical appearance. This approach ensures that the individual becomes informed to form realistic expectations about their sexual health. Once this is done, next is the ‘SS’ phase which stands for specific suggestion. Here, the health providers offer specific, personalised suggestions tailored to the patient’s context. In the case of young women, the discussions may encompass contraception options compatible with their medical condition, or strategies to maintain intimacy with a partner despite physical changes. The ‘IT’ component involves referring the care receiver for specialised care (e.g., gynaecological care). This is key when the SRH concerns of the young adult goes beyond the scope of the palliative care team. If health professionals and the authorities of Ghana’s health system can adopt these strategies, then it can help ensure that no one is left behind in the promotion of quality SRH in palliative and EoL care settings. The PLISSIT model can be implemented incrementally, with basic permission giving and limited information integrated into routine consultations, while specific suggestions and intensive therapy are addressed through referral networks within existing health systems.

Meeting the SRH needs of young adults receiving palliative and EoL care in Ghana demands evidence. It is imperative for researchers to focus on estimating the magnitude of unmet need for SRH services among young adults in palliative and EoL care contexts. Such evidence would inform the Ghana Health Service and the Ministry of Health on who to target, where to target, and how to target the most vulnerable young adults. Further research must also prioritise how interventions can be co-designed to reduce the unmet need for SRH services in Ghana.

Conclusion

This article argues that sexual and SRH needs are quintessential to young adults receiving palliative and EoL care in Ghana. It demonstrates that a combination of individual, structural, and cultural factors contributes to the neglect of SRH needs in Ghana’s palliative and EoL care setting. There is still a chance to turn the corner and ensure that all persons receiving palliative and EoL care receive unrestricted and unbiased SRH services. Key actions to address the identified barriers include the integration of SRH as a core component of palliative care education and training in Ghana, developing guidelines or protocols for assessing and handling SRH needs of young adults living with chronic NCDs, and adopting a person-centred approach when communicating about SRH matters.