Leave No One Behind – Equal access to palliative care, support to the informal caregivers

Categories: Care and Community Engagement.

Authors: Petra Auramo, Tuulia Sunikka, Tiina Saarto, and Minna Hökkä

Finland is one of the best countries in the world to be born in, but still, there are development needs in providing high-quality palliative care to ensure good end-of-life (EOL). The Finnish Ministry of Social Affairs and Health (STM) has stated that the gap to provide equal access to palliative care still exists. Therefore, a goal has been set to develop palliative and EOL care so that every patient and family would have an equal right to palliative care. Research has revealed that informal caregivers contribute a great deal of time and money to enable the EOL care at home for their loved ones, but still, historically the care plan has not considered the needs of the caregivers sufficiently. Societies rely, to a varying extent, on the informal carers who cover a large proportion of the care needs of their loved ones.

“Informal caregivers support at the end of life is invaluable. Together with professionals, they enable good end-of-life care at homes” – Professor of Palliative Medicine Tiina Saarto

In 2021 informal caregivers were the main focus in Finland in the national World Hospice and Palliative Care Day (WHPCD) event. The theme of the event was ‘Leave no one behind.’ The goal was to encourage social discussion about the importance of informal caregivers as part of the implementation of palliative care.

Family-centered care is important in palliative and EOL care. Holistic care means comprehensive human-centered support system and concrete help for everyday life” – Lecturer Tuulia Sunikka


World hospice and palliative care event in Finland

Our goal in our national WHPCD event was to raise awareness of palliative care in Finland. Outreach tools and templates commissioned by the Worldwide Hospice and Palliative Care Alliance were utilized in the planning, implementation, and outreach for the event. Visual style was provided by a photographer. Social media accounts were created for the national event on Facebook, Twitter and LinkedIn to share information on palliative care and the WHPCD. Several non-profit organizations were also asked to publish information about the WHPCD main event on their social media. Informal caregivers got visibility in the national news, social media, radio interviews, newspaper publications, and several non-profit organizations. Also, politicians noted the event.

On October 9th, 2021 the national WHPCD event was organized virtually because of the Covid 19 restrictions. Finnish palliative care experts were invited to speak on different aspects of the chosen theme. The topics included informal caregivers psychosocial support, implementation of home EOL care, and the availability of concrete support services. A hospital musician shared her experiences and music she uses when meeting palliative care patients and their loved ones.

At the end of the event, online participants had the opportunity to comment and ask questions from the palliative care experts. Several questions were related to the experience of guilt and feelings of inadequacy by the loved ones. Other questions included criteria for use of advanced directives, quality criteria for home EOL care, and questions about where to find trustworthy information about existing health care services and support. The comments emphasized gratitude for the palliative care professionals, the importance of palliative care training and a multi-professional approach, and the need for raising the voice of palliative care.

Recording of the event was available on for two weeks. High-quality recordings of the lectures were also subtitled and are available to use as teaching material in the future training of Finnish nurses and doctors.


Lessons learned and future visions

Studies have shown that emphasizing the importance of active support, information, and guidance for informal caregivers should be a part of palliative practices, education, and policymaking. STM’s latest report also highlights the need for financial support to informal caregivers during EOL care, in addition to the already available right to take an unpaid leave from work.

After the success of the first national WHPCD event, various palliative care networks are committed to organizing the event in Finland annually. The goal is also to spread the WHPCD event so that palliative care professionals and the general public can meet at local events as well.

NB: In Finland:

  • Relatives provide about 50 to 95 percent of all patient care
  • Home care provided by relatives is an important factor at the societal level, as without an informal caregivers EOL home care would often be impossible
  • Loved ones carry out care without separate education
  • Loved ones have the best view of the needs and wishes of the patient
  • It is important, if the patient and those close to him or her so wish, that those close to them have the opportunity be with them through their EOL care
  • Recognition of informal caregivers should be a goal in all countries
  • Adequate support should be provided to the loved ones during palliative and EOL care


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