Palliative Care Netherlands (PZNL) interviewed 1242 Dutch elderly, 1165 patients and 1011 caregivers about their experiences and perspectives on proactive care and late life support. These three surveys show that many people think about end-of-life care and support and also feel the need to discuss it with healthcare professionals. However, in practice this rarely happens.
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The Dutch are thinking about last-stage care
Three quarters of Dutch over 65s reflect on their wishes regarding late life decisions, such as resuscitation, euthanasia, legal representation and treatment decisions. Only a third talk about it with people in their immediate environment and only 3-7% talk about it with their doctor (family doctor). Check out the results of the survey among older Dutch people here.
Only half of patients talk to their doctor
Half of the Patient Federation Healthcare Panel respondents have not yet discussed the final stage of life with their doctor. They find the topic (too) difficult, not urgent enough, or wait for the healthcare professional to raise it. Patients who have discussed end of life care with their doctor indicate that they primarily discuss the following topics:
- their wishes for euthanasia (57%),
- wishes and limitations of treatment (51%)
- and their advance directive (47%).
Patients prefer to go to the family doctor for a discussion about the last stage of life. When holding the conversation, they find it important that the healthcare provider is clear, open and honest and that sufficient time is available. Click here for the patient survey results.
Healthcare professionals familiar with the aids, use is still limited
There are various Instruments developed to support healthcare professionals. The surprise question is best known among healthcare professionals (70%). This is a tool for recognizing the palliative phase. In addition, healthcare professionals are more alert to possible palliative care needs in frail elderly, when complaints rise and when complications occur.
For support in proactive care planning, most healthcare professionals are familiar with driving ‘Talk about the end of life’ (60%), however its use is limited. In proactive care conversations with patients, the most frequent topics are the wishes and limitations of treatment, the course of the disease, and joint decision making. Click here for the survey results of health professionals.
More openness
Citizens and patients have a great need for openness to discuss their wishes and end-of-life questions with a healthcare professional. However, they don’t always initiate this conversation. Tools are available on overpalliatievezorg.nl to support them in conversations with their loved ones and healthcare professionals, such as:
In order to meet patient needs and support healthcare professionals in the dialogue on proactive care planning, the National Palliative Care Program II focused on further incorporating this into daily practice. These investigations will be repeated periodically as part of the National Palliative Care Program II.
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