Palliative Care Netherlands (PZNL) surveyed 1242 elderly Dutch people, 1165 patients and 1011 caregivers about their experiences with and perspective on proactive care and support in the last phase of life. These three surveys show that many people think about end-of-life care and support and also feel the need to discuss this with care providers. However, in practice this rarely happens.
The Dutch are thinking about care in the last phase of life
Three quarters of Dutch people over 65 think about their wishes with regard to decisions in the last phase of life, such as resuscitation, euthanasia, legal representation and treatment decisions. Only a third talk about this with people in their immediate environment and only 3-7% talk about this with their (GP) doctor. Look here for the results of the poll among older Dutch people.
Only half of patients speak to their healthcare provider
Half of the respondents from the Healthcare Panel of the Patient Federation have not yet discussed the final stage of life with their healthcare provider. They find the subject (too) difficult, not urgent enough, or they wait for the healthcare provider to bring it up. Patients who have had a discussion with their healthcare provider about end-of-life care indicate that they mainly discuss the following topics:
- their euthanasia wishes (57%),
- treatment wishes and limits (51%)
- and their advance directive (47%).
Patients prefer to go to the GP for a discussion about the last phase of life. When the conversation is held, they find it important that the care provider is clear, open and honest and that sufficient time is available. Click here for the results of the patient survey.
Care providers familiar with aids, use still limited
Various tools have been developed to support caregivers. The Surprise Question is best known among healthcare providers (70%). This is a tool to recognize the palliative phase. In addition, care providers are extra alert to possible palliative care needs in frail elderly, when complaints increase and when complications occur.
For support in proactive care planning, most healthcare providers are familiar with the ‘Talk about the end of life’ guide (60%), but its use is limited. In proactive care conversations with patients, the most frequent topics are treatment wishes and limits, the course of the disease and joint decision-making. Click here for the results of the survey among healthcare providers.
More openness
Citizens and patients have a great need for openness to discuss their wishes and questions about the final stage of life with a healthcare provider. However, they do not always initiate this conversation. Tools are available on overpalliatievezorg.nl to support them in conversations with their loved ones and with care providers, such as:
In order to meet the needs of patients and to support care providers in holding discussions about proactive care planning, the National Palliative Care Program II focuses on further embedding this in daily practice. These surveys will be repeated periodically in the context of the National Palliative Care Program II.