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Over 70% of palliative care patients would like death to be more openly discussed in society

The European Day of Palliative Care was celebrated on June 15th 2023. This day´s main objective is to raise awareness of the importance of Palliative Care and to highlight the need for Palliative Care development, as it is still the great unknown for many people.

Talking about death and dying is still a taboo in most societies, but being open about the end of life would be beneficial, especially for those facing this moment in their lives and for their relatives. In fact, over 70% of palliative care patients would like death to be more openly discussed in society, according to the first preliminary results from the iLIVE Project “live well, die well”, an international study that has interviewed hundreds of patients in the last phase of their lives.

Fourteen centers take part in this project, funded by the European Commission, which is entering the last phase of its study about palliative care, and will be announcing final results in the upcoming months. One of the main aims of the study is to understand better the needs and concerns of patients and relatives in the last phase of life. For this, a cohort study has interviewed more than 1.200 patients and 550 relatives in Argentina, Germany, Iceland, Netherlands, New Zealand, Norway, Slovenia, Spain, Sweden, Switzerland and the UK​.

In most cases, almost 80%, the patients included in the study had a cancer diagnosis, but also included situations such as cardiovascular or pulmonary diseases, among others.

The percentage of patients who would like to talk openly about death was higher among patients being alone than for those living with a partner or in an institution, but they are a majority in all cases. Talking openly about death and dying is also considered to be beneficial by the relatives, in a very similar percentage.

The importance of family support

Among these patients, family relations are the main source of strength, according to these preliminary results so far. Friends and children are also among the main source of strength. But family is also the main concern for them, even more than pain or general health situation, which are by far the three most important worries for the patients.

The European Day of Palliative Care under the motto: “one voice, one vision in Palliative Care”, promotes Palliative Care as a human right, a moral imperative and a global ethical responsibility. Palliative Care are for people of all ages (from prenatal Palliative Care to old age) and are relevant for all diseases at all stages, not only at the end of life.

Through the iLIVE project, people with advanced illnesses have been given a voice in the last months of their lives, and their true wishes and expectations have been heard first-hand. The final results of the iLIVE project will contribute, thanks to the real protagonists, to achieve a vision that truly responds to the needs of patients and their families.

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