Mind the gap – health literacy and language level

Today, in Palliative Stories – the EAPC’s special series from the perspective of patients and family carers – we look at how quality of communication is closely related to quality of care.

Clémence Ross is a former Secretary of State for the Ministry of Health, Welfare and Sport and is now a Director of Agora. Agora is an organisation which adopts a palliative approach to care and welfare and has independent expertise on topics related to end of life from the perspective of citizens, patients and their relatives.

Clémence Ross

Clémence Ross

Palliative care in the Netherlands is a task performed by general healthcare practitioners. This can include more or less everything to do with the care provided to terminally ill people. In doing this there is a genuine intention to involve patients and their families in the care process. To achieve this effectively is challenging and difficult. Agora has expertise in the area of patient communication. In addition, we bring the patient’s perspective to the attention of professionals, organisations and government and encourage patient participation.

Patient participation requires not only the skills of professionals. Patients must be able to form a judgment, and to contribute that to the process. That is not always such an easy thing to do. Research shows that one in two Dutch people experiences difficulty in taking full control when it comes to their health, illness and taking care of themselves. Three out of ten adults are not able to obtain health information and to process it. And one in five older people has a low literacy level and little knowledge about health issues.1 All of which is reason enough for Agora to focus on providing accessible communication about palliative care to patients and relatives.

To this end, Agora has set up among other things a nationwide Forum for Communication with Patients about Palliative Care (PPZ is the Dutch acronym). Representatives of patients, clients and relatives participate in this, as well as care organisations and other umbrella or professional organisations. The PPZ Forum has, among other things, contributed to the patient version of the Palliative Care Module. Agora has also released a number of leaflets for patients and relatives in recent years in collaboration with the Forum PPZ. These are written at B1 level (Common European Framework 2). This means that 80% of Dutch people can understand these leaflets. In doing this, we are adhering to the communications directives from the government. From January 1 this year the government is required to communicate at B1 level too.

Reactions from patient organisations to the leaflets have been positive:

“What good news that the folder is now accessible to a wide audience!”

A number of professionals have had to get used to producing texts at a B1 level. Not everyone is aware of differences in language and health literacy levels. Too often, professionals are unconsciously incompetent.

Agora promotes research and further developments in this area – and with positive results. In the Netherlands, patient participation, health literacy and illiteracy are on the political agenda in palliative care!

We would like to hear about your experiences – please leave your comments or email us.

Links and resources

  • Read the factsheet ‘Palliative Care 2014’ for more information about palliative care in the Netherlands or about The Palliative Care Module.
  • Agora.

1. Nivel Kennissynthesegezondheidsvaardigheden (2014). 
2. Common European Framework of Reference for Languages.

Read more ‘Palliative Stories’ on the EAPC blog
Next month, Jennifer Fox from Australia will be sharing her story. Click here to read the earlier posts in this series.

If you have a patient, or a family member or friend, who would like to contribute to the series please email the editor.

A message from the EAPC
We would like to thank everyone who has kindly contributed to this series of ‘Palliative Stories’. In publishing patients’ and families’ stories we are aware that content may sometimes focus only on one side of the story but we hope that the stories will help us all to better understand people’s palliative and end of life care experiences. Unfortunately, we are not able to give advice or comment on individual cases but we share in the distress that our contributors have experienced.



This entry was posted in ADVOCACY & POLICY, Palliative Stories, PATIENT & FAMILY CARE and tagged . Bookmark the permalink.

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