End of life care is a core task for the healthcare services. In this international project the experiences of bereaved relatives were used to improve the care for dying cancer patients.
Cancer is one of the main causes of death across the world, and the number of cases is rising. Securing dying cancer patients and their families the best possible care, wherever they are cared for, is an important part of cancer care. One way to evaluate the care at the end of life is to ask bereaved relatives about their experiences. CODE (Care Of the Dying Evaluation) was developed in the UK specifically to assess care in the last few days of life and the first period post bereavement. CODE asks about the quality of patient care and the support for the relatives. In this project, CODE was used in an international survey of bereaved relatives after cancer deaths in seven countries in Europe and South America; Argentina, Brazil, Uruguay, the UK, Poland, Germany, and Norway. The aims were to assess the quality of end of life care, compare between the countries, share experiences, and develop a common standard. In the last part of the project, the results of the survey were used to implement key practice changes to improve end-of-life care, with a high degree of user involvement.
Before the start of the project, CODE had been translated into German and Polish. During the first six months of the project, the questionnaire was translated into Spanish, Norwegian, and Portuguese, and pilot tested in volunteers from the general population and in bereaved relatives after cancer deaths. The result was an international tool, i-CODE (international CODE), with a common set of core items, and demographic questions adapted to the individual countries.
CODE international survey ran one year from September 2017. Bereaved relatives were recruited from altogether 22 hospitals in the seven participating countries, including seven hospitals in Norway. We received 914 completed i-CODE questionnaires, well above our minimum goal of 600. No country had less than 100 responses. The differing response rates between the countries were probably related to the different methods for data collection (completion of the questionnaire by paper/post; online; through interview face to face or by telephone), depending on what was feasible in each country. All participating hospitals completed an online survey about their end-of-life care services.
The results from the international survey provided an interesting picture. The relatives generally perceived the care and support as very good. However, there were common concerns related to information and discussions about the dying phase. In addition, specific areas for improvement were identified for each country.
In all the seven countries, the results from the survey were discussed in focus groups with bereaved relatives. These interviews provided plenty of ideas for quality improvement based on the "weakest" areas identified. During the first half of 2019, practice changes were implemented at two sites in Argentina and one in Poland. Acknowledged quality improvement methodology was used to implement the changes, and participatory action research to assess their immediate impact. These interventions were the two initiatives to be completed as part of the project. However, similar, limited projects were conducted by all partners. The quality improvement initiatives included: a healthcare professional handover tool; a guideline for family meetings; information leaflets to support end-of-life discussions; a nurse-led bereavement service; and educational enterprises. Several of the initiatives have been implemented into daily clinical work.
The project has been presented at a number of international conferences. 6th-7th November 2019 the international conference "A Good Ending - Good for All" was arranged in Bergen. This was the final conference of the project, incorporated into the 6th Annual Research Conference of the International Collaborative for Best Care for the Dying Person. The event was supported by the Norwegian Research Council and had 220 participants from 18 different countries. The project was presented through a dedicated plenary session, posters, and a parallel session focused on how to use CODE results for practical quality improvement. Results from the project were also presented at an open public meeting.
The results of the project are a common, international tool to evaluate the care in the dying phase, an international report on the current quality of end-of-life care, and guidance on how to use CODE results for concrete improvement initiatives. The project has confirmed that care for the dying has global relevance and is well suited for international collaboration, and has laid a foundation for continued research cooperation between partners in Europe and South America.
www.icode7.orgClinicalTrials.gov identifier: NCT03566732
- Spørreskjemaet i-CODE klart til bruk som utfallsmål/kvalitetsindikator for omsorgen ved livets slutt. Tilgjengelig veiledning for omsetting av resultater i praktisk kvalitetsforbedring.
i-CODE innlemmet i Nasjonalt handlingsprogram for palliasjon.
- Et bedre palliativt tilbud og fornyet oppmerksomhet mot omsorg for døende, gjennom undervisning og opplæring, nye tiltak, deltakelse i lokale kvalitets- og sertifiseringsprosesser og spredning av resultater og erfaringer.
- En mastergrad og to ph.d.-prosjekter; bidrag til tredje ph.d.
- Nye muligheter for forskningsdeltakelse og -samarbeid, både innad i det enkelte land, mellom partnerne på hvert kontinent og mellom partnere i Europa og Sør-Amerika. Grunnlag for videre samarbeid.
- i-CODE inkludert i Horizon2020-prosjektet iLIVE, med oversettelse og testing på fire nye språk. Prosjekt med validering av CODE i Australia.
- Læring ut fra erfaringer med involvering av etterlatte og frivillige fra befolkningen på alle trinn i prosjektet
Cancer is one of the leading causes of death worldwide, and the number of new cases is rising. Despite new developments in treatments, 2.35 million died from cancer in the EULAC
countries in 2012. Ensuring dying cancer patients and their families receive high quality care and support wherever they die, is of paramount importance. One method of evaluating this is to use postbereavement questionnaires, such as 'Care Of the
Dying Evaluation' (CODE TM). CODE focuses on the last days of life and immediate bereavement period and seeks perceptions about quality of patient care and level of family support, and has been assessed for validity and reliability. This project would seek to conduct an international survey of bereaved people using the CODE questionnaire, to assess the current quality of care at an international level, enable comparisons between countries, and develop a common benchmarking tool. Based on transnational cooperation, key findings from the international survey will be utilised to implement clinical practice changes, involving bereaved relatives in the action planning. The immediate impact of these changes will be assessed from a family and healthcare professional perspective. The planned project outcomes are an international report on the current status of care for dying cancer patients, a common international outcome measurement tool, guidance on how
measurement results can be used to improve quality of life for dying cancer patients, and dissemination of the results to healthcare professionals and the public.