“Hospice care does not belong on the margins of society, but within the community. We must make palliative care more accessible to people throughout Slovenia, as dignified end-of-life care must not depend on one’s postcode,” emphasizes Human Rights Ombudswoman Dr Simona Drenik Bavdek.

The Ombudswoman is responding to statements by residents of a neighbourhood in the City Municipality of Maribor, where the municipality is planning to establish a dementia centre and a regional hospice. Dr Drenik Bavdek recognizes that planning a large facility in a residential area may raise questions about the size of the building, traffic, access, green spaces and compliance with spatial planning regulations. These issues require transparent procedures, timely information and a genuine opportunity for public participation. “At the same time, concerns arising from fear of dying, sick people or hearses demonstrate how essential it is to understand the mission of hospice care and dispel prejudices. Dying and death have a place in the community because they are part of life. Human dignity must also be protected at the end of life,” she states.

The Ombudswoman welcomes the efforts of the City Municipality of Maribor to provide accessible palliative and hospice care, which is an essential part of a humane, safe and dignified society. Slovenia currently has only one inpatient hospice, while expert assessments indicate that at least six are needed. “When a person is experiencing severe health problems or approaching the end of life, they and their family need support and peace above all. At such a time, searching for information about available support, negotiating with service providers or making frequent journeys to Ljubljana represents a burden that is simply unacceptable today for a welfare state such as Slovenia,” the Ombudswoman emphasizes.

A hospice is not a hospital or a care home for older people, but a place that provides comprehensive support to people with incurable illnesses in the final stage of life, when care at home is no longer possible or would place too great a burden on the patient and their loved ones. Well-designed hospice care does not diminish the importance of care at home; it complements it and provides families with professional assistance, respite and a safe environment.

The Human Rights Ombudsman of the Republic of Slovenia (Ombudsman) notes that, according to some data, almost one in ten residents of Slovenia is involved in caring for an older person in need of assistance, a chronically ill relative or a relative with a disability. Dr Drenik Bavdek expresses her profound gratitude and respect to all institutions, professionals and the many volunteers who care for seriously ill people and enable them to take their leave with dignity. She pays special tribute to family members who care for ill and dying loved ones on their own, often without sufficient professional, financial and psychosocial support.

No system can function without informal carers, yet their burdens and distress often remain insufficiently recognized. The state must therefore distribute care more fairly between formal and informal forms of care, enable people to reconcile their working lives with caring for a loved one, and provide clear information on where they can turn during the most difficult periods of their lives.

The Ombudsman points out that the Constitution of the Republic of Slovenia, international human rights treaties and legislation oblige the state to protect human dignity and equality and to ensure access to health and social services. Everyone, regardless of where they live, must have access to support that enables them to live and die with dignity. The decentralization of palliative care is therefore a matter of equality and the effective realization of human rights, not merely a question of how services are organized.

The Ombudsman has long been drawing attention to staff shortages in health and social care, the closure of units in care homes for older people, long waiting times for institutional care, overstretched emergency departments and insufficient capacity for rehabilitation, nursing and palliative care. It also points to a shortage of community-based services, such as home-help services, community nursing, palliative care, assisted living and emergency accommodation. These gaps leave many older people to cope on their own, leading to feelings of helplessness, loneliness and distress, while the consequences are often borne by their relatives as well. In the Ombudswoman’s view, this too is unacceptable.

The Ombudsman records a high proportion of substantiated complaints in the areas of social security, health insurance, pension insurance and disability insurance, which very often concern the realization of older people’s rights. “This shows that violations are not isolated incidents, but recurring systemic problems. Access to services for older people in Slovenia is markedly unequal, which is contrary to the constitutionally guaranteed principle of equality. There are significant differences between municipalities in access to home-help services, community nursing, palliative care and other services, meaning that older people’s quality of life depends to a large extent on where they live,” said the Ombudswoman. The development of palliative, hospice and other community-based services must form part of the state’s systemic response to these challenges.

The Ombudswoman calls on everyone involved to engage in respectful dialogue that addresses residents’ concerns while seeking solutions. She also calls on the state to establish, without further delay, a stable network of palliative and hospice care throughout Slovenia, ensure a sufficient number of appropriately trained staff and effectively integrate health, social care and community services. In doing so, the state must consistently implement the recommendations of independent oversight bodies and ensure that rights do not remain merely on paper.