Piret Paal and Ars Moriendi Estonia 2030 working group
When the approach of death is not acknowledged, people are often given medications and treatments that no longer meet their wishes or improve their situation. In high-income countries, 25–68% of people end up in the emergency department in the final stages of life, and 25–75% die in hospital. At the same time, palliative care, or treatment aimed at relieving symptoms and improving quality of life, is available to only about 14% of people worldwide who need it. In Estonia, nearly 10,000 people need palliative care annually.
The price of death denial is that important things are left unsaid: what the person's priorities are in life, what the goals of treatment should be, and how to ensure adequate symptom relief. When a person's wishes are not respected, whether they relate to treatment, religious practices, or where they want to spend their final days, the person's already fragile nature and personality fade away. In this way, the end of life often becomes more difficult than it needs to be.
A study in eleven European countries found that nearly half of dying people suffered from unrelieved symptoms such as constipation, insomnia, nausea or depression. Studies of people diagnosed with cancer show that more than a third of patients experience at least 13 distressing symptoms that could have been prevented or alleviated. Studies have shown that when the dying suffer, their loved ones suffer too. Grief, anxiety and social withdrawal affect many families. When the death of a loved one has been painful and distressing, family members are also at much greater risk of developing long-term grief and psychological problems.
Inadequate end-of-life care is also burdensome for healthcare professionals. It causes burnout, stress and moral distress because they cannot help patients in a way that is humane. Since the availability of palliative care training in Estonia is sporadic and healthcare professionals' knowledge of the options offered by palliative care to alleviate symptoms is therefore limited, 73% of our doctors are in favor of ending life through assisted suicide or euthanasia. The reason given is that this is the only way to really help people.
Why change is needed?
In Europe, around 4.4 million people need palliative care every year. An ageing population and the rise in chronic diseases are making the situation increasingly difficult. Access to care is becoming a matter of financial means. This means that the quality of care and treatment is not the same for everyone. People on lower incomes, in rural areas or from minority groups often receive care that is not adequate for their needs. Few people access the care they need because the health system is under-resourced. This places a huge burden on families and communities that are not adequately prepared to take on such tasks.
At the same time, health care professionals are debating end-of-life practices. Issues such as palliative sedation, withholding nutrition, or physician-assisted death are polarizing debates and influencing how people die and think about death. Death has become a clinical and increasingly less social phenomenon.
We need to talk about death
Palliative care has evolved significantly over the past 50 years. In 2018, the World Health Organization (WHO) Member States signed theDeclaration of Astana, which reaffirmed the commitment of countries to make palliative care available. The 2024 recommendations of the European Union Mission on Cancer emphasize valuing palliative care and linking it to the entire treatment journey, reducing inequalities, supporting innovation, and involving people and families with serious illnesses.Lancet Commission on the Value of Deathhas also emphasized that death must be brought back into life. It is necessary to understand that dying is a natural and valuable part of life.
Responsibility is shared
Talking about death is not just the job of healthcare professionals. It is the job of society as a whole. In both medicine and society, death is seen as a failure or misfortune, not as a natural part of life. Talking about death is associated with fear, sadness, and anguish, and it seems too difficult.
Yet we need an open discussion with clear terminology. Death is not just the end of life, but also a test of humanity and a compassionate society. Individuals, policymakers, insurance providers, scientists, journalists, and artists – everyone has a role to play in breaking taboos and shaping attitudes that support a quality end of life.
What are your experiences and thoughts about the end of life? Have you felt that these topics were difficult to talk about, or have you experienced that an open conversation brought relief? Share your thoughts in the comments and with friends and acquaintances, because that's how we can break taboos together.
You can read the study mapping the opinions of Estonian doctors here.
