Respite care that can save the health and even life of the patient and the caregiver

In Poland, caring for a terminally ill child is often a lonely struggle for the family – exhausting, devastating and conducted in silence. In the shadow of dramatic diagnoses, sacrificed careers, cracking family ties and sleepless nights, the concept of “respite care” barely makes its way through. But it is this that can decide whether a parent will survive. Respite care must be not only a standard, but also a guaranteed benefit – comparable to therapy, rehabilitation or psychological care – this topic was discussed at length during the meeting of the Parliamentary Team for Rare Diseases and for Children.

Beata Hernik-Janiszewska, president of the Wrocław Children's Hospice, clearly states that respite care is not a luxury, but a necessity.

In the home hospice care system, the parent becomes the main executor of the treatment plan, and his or her psychophysical condition determines the comfort and quality of life of the young patient.

The hospice, which has been operating in Lower Silesia for years, launched the first stationary respite care center in the region in 2023 – “Kokoszka”. A place that allows families to catch their breath, even for a moment. As Hernik-Janiszewska says, this form of care should be recognized as a specialized service financed from the Solidarity Fund. Today, despite the availability of programs, their real usefulness is negligible – the price of care at PLN 50 gross per hour does not cover the costs of specialized staff or encourage institutions to create similar facilities.

For seven years, I have been observing families who spend weeks, months, years in tension, fear, physical exhaustion. PTSD, depression, somatic diseases, the breakdown of family relationships – these are not exceptions. They are the norm.

Her story paints a picture of a family as a system of interconnected vessels. A child is ill, parents suffer, siblings suffer, and often grandparents feel it. Respite care provides a chance to break this chain – at least for a while. Parents can get some sleep, go to the doctor, and sometimes for the first time in years – go on vacation. Healthy siblings gain parents who are less tired, more present. A sick child gains professional and empathetic care, not resulting from desperation.

Turczyńska firmly distances herself from attempts to combine respite care with the assistance service for people with disabilities, which is promoted by the Ministry of Family. "This cannot be a person with basic training. We need medical caregivers, physiotherapists, anaesthesiology nurses - because the children we take care of are often patients on respirators," she explains. Entrusting a child to an unprepared person not only does not bring relief, but also increases anxiety and stress.

Although the Solidarity Fund provides a theoretical possibility of providing respite care, the scale and quality of this assistance leave much to be desired. As of 2025, the service is provided by approximately 180 entities, the vast majority of which are aimed at the elderly. It is not known how many children have been provided with assistance, because statistics are not kept.

Moreover, limitations in the number of hours (e.g. 20 per month in home care), irregular financing and failure to recognize the real needs of families make the service ineffective. Non-governmental organizations that provide assistance often have to stop their activities at the end of the year, waiting for a new pool of funds.

Experts are calling for the creation of nationwide standards for respite care – with specialized staff, reliable pricing and real access for families of terminally ill children. They are also calling for an end to the rigid criterion of disability certification – because the procedures take too long, and time in the case of a terminal illness is literally at the cost of life.

The hospice in Wrocław has already managed to provide assistance to over 400 families. But there are thousands in need. In a country where much is said about caregivers, but still too little is done, the words "respite care" should not be just a conference slogan. They should be a promise that the state has no right to break.