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Families rate dignity and support in final days of cancer care

NCT ID NCT03566732

Knowledge-focused Sponsor: University of Bergen Source: ClinicalTrials.gov ↗

What the study statuses mean

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Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed This study
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Sep 11, 2026 · Last updated Sep 11, 2026

Summary

Researchers in seven European and Latin American countries ask bereaved relatives to complete the CODE questionnaire about two months after a family member died of cancer in hospital. The survey asks whether patients were treated with dignity and respect and whether relatives felt supported in the patient's last days. The goal is to gather 100 completed questionnaires per country, compare hospital care across countries, and identify areas that need improvement.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If the survey reveals weak spots in hospital end-of-life care, researchers and families could work together on changes to improve dignity and support for dying cancer patients.
What could go wrong
This is a questionnaire study, not a treatment trial, so it cannot prove what works. Relatives' memories may be incomplete or shaped by grief, and care in hospitals may differ from care at home or in hospices.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

914 people

The number who actually took part.

Started

Aug 2017

Finished

Dec 2018

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Next-of-kin to cancer patient who died an expected death in hospital

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * Next-of-kin to a patient who died an 'expected' death from cancer in hospital * Has been present at the hospital together with the patient at least some of the time during the patient's last two days. (This might not always be known or recorded, therefore the participant may have the option to pass the questionnaire on to somebody better placed to complete it.) * Patient was ≥ 18 years of age at the time of Death * Patient had been admitted to the hospital (not any specific ward) at least three calendar days (e.g., admission August 1st, died August 3rd) * Able to give written informed consent, which might be implied when the participant completes and returns the questionnaire, in keeping with the ethical stipulations for each country Exclusion Criteria: * Patient had a sudden and unexpected death * Unable to complete the questionnaire due to language abilities or reduced cognitive functioning (in some countries the offer of a translator would be provided if someone wanted to complete the questionnaire but had difficulty due to languages)

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Conditions

The condition(s) this trial relates to.

cancer neoplasm

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Bereavement Neoplasms Quality of life

Contacts and locations

Locations

  • Bærum Hospital, Vestre Viken

    Bærum, Norway

  • D. Wladyslaw Biegański Regional Specialist Hospital

    Grudziądz, Poland

  • F. Dłutek Autonomic Public Healthcare Centre

    Rypin, Poland

  • Førde Central Hospital

    Førde, Norway

  • Haraldsplass Deaconal Hospital

    Bergen, Norway

  • Haugesund Hospital

    Haugesund, Norway

  • Haukeland University Hospital

    Bergen, N-5021, Norway

  • Hospital Carlos B. Udaondo

    Buenos Aires, Argentina

  • Hospital Universitario Privado de Córdoba

    Córdoba, Argentina

  • Instituto de Investigaciones Médicas Alfredo Lanari. Universidad de Buenos Aires

    Buenos Aires, Argentina

  • Katholisches Klinikum Mainz

    Mainz, Germany

  • Mutualista Asociación Hospital Evangélico

    Montevideo, Uruguay

  • Paluckie Health Centre, Żnin Hospital

    Żnin, Poland

  • Provincial Specialist Hospital in name of the blessed priest Popiełuszko

    Włocławek, Poland

  • Pulmonological Hospital in Bydgoszcz

    Bydgoszcz, Poland

  • Royal Liverpool University Hospital

    Liverpool, United Kingdom

  • St Olavs Hospital

    Trondheim, Norway

  • Stavanger University Hospital

    Stavanger, Norway

  • Sumare State Hospital

    São Paulo, Brazil

  • University Medical Centre of the Johannes Gutenberg University of Mainz

    Mainz, Germany

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