Living well, dying well. A research programme to support living until the end (iLive)

German Version

Project management: Prof. Dr. Raymond Voltz, Dr. Dr. Julia Strupp
Contact: Dr. Dr. Julia Strupp, Melanie Joshi
Duration: 01/2019-12/2022
Funding: EU-Horizon 2020

Short project description

In this four-year project, which is coordinated by the ErasmusMC in Rotterdam, researchers from 13 countries will collaborate to increase our knowledge and provide applicable policy advice on palliative care in Europe. The iLIVE project will investigate the effectiveness and cost-effectiveness of two innovative interventions in end-of-life care. Its objective is to develop and evaluate a digital clinical tool to optimize medication management to relieve symptoms that occur at the end of life, and an international volunteer programme to support patients dying in the hospital and their families. A prospective cohort study will collect data on the concerns, expectations and preferences concerning dying and end-of-life care, of terminally ill patients and their caregivers and deliver the first Core Outcome Set for care of the dying.

Our part in Cologne is to collect data on these issues at the individual level and we will also relate the findings on individual participants to broader cultural and religious values. Within the cohort, data will be collected upon patients’ inclusion in the study (baseline assessment), one month after inclusion (follow-up assessment 1), in the last days of life (follow-up assessment 2), and 90 days post-bereavement (follow-up assessment 3).

In principle, all competent adult patients with an estimated life expectancy of six months or less are eligible, regardless of their diagnosis, gender or age, or place of residence. To define eligibility for the study, we will use a modified version of the Gold Standards Framework Proactive Identification Guidance (GSF-PIG) that includes the ‘surprise question’ (SQ) and the Supportive and Palliative Care Indicators Tool (SPICT).

Zur Person
Qualifications and professional experience
Since 10/2018 Research assistant at the Department of Palliative Medicine, University Hospital of Cologne
10/2013 - 03/2017 Master of Arts (Latin American Studies/ Social Sciences), University of Cologne
10/2012 - 10/2013 Second Course of Studies: Politics and Society, University of Bonn
10/2008 - 03/2013 Bachelor of Arts (Latin American Studies/ Economics), University of Cologne
2010 - 2018  Student assistant in the care sector/Nurse, University Hospital Cologne
2004 - 2007 Nursing-School, Offenbach a.M.

Research Focus

  • Evaluation of specialized outpatient palliative care (APVEL)
  • Living well, dying well (iLIVE)
  • Early Palliative Care for Glioblastoma Patients (EPCOG)
Zur Person
Qualifications and professional experience
Since 07/2013 Research Coordinator at the Department of Palliative Medicine, University of Cologne
2015 Doctoral Thesis (Dr. rer. medic.) - Validation of the German Version of the Schedule of Attitudes towards Hastened Death (SAHD-D) (Prof. Dr. Raymond Voltz, Medical Faculty of the University of Cologne)
2011 Doctoral Thesis (Dr. paed.) - Successful aging of people with physical disabilities and the sense of coherence as a resource in the aging process (Prof. Dr. Mathilde Niehaus, Faculty of Human Sciences / University of Cologne)
2009 - 2013 Research Associate at the Department of Palliative Medicine, University of Cologne
2005 - 2009 Research Associate at the Leibniz Institute for the Social Sciences (GESIS) at the Center of Excellence Women and Science (CEWS)
2004 Magistra Artium (M.A.)
1999 - 2004 Social and Behavioral Sciences (University of Hagen)
1999 - 2005 Division of Disability Services, Family Supportive Services, Diakonie Bonn
Research Focus
Health Services Research, the last year of life in Cologne, specialized outpatient palliative care, development of a tool to assess a desire to hasten death, palliative care integration for neurological patients (early integration, unmet needs); patient-centered care, palliative care structures for neurological patients
Teaching
“Methods of Empirical Social Research, Text Analysis and Counselling and Intervention" (Master Gender & Queer Studies)
Medical Sociology (Research Processes in Medical Sociology), Seminar
Lecture series Research Track
Memberships
Member of the Consilium for junior researchers at the University of Cologne (Representative for the Medical Faculty)
Member of the Research Working Group (AG Forschung) of the German Association of Palliative Medicine (DGP)
Steering Board Member CoReNet (Cologne Research and Development Network)
Completed projects
  • Validation of the German version of the Schedule of Attitudes toward Hastened Death (DKH funded)
  • Impact of a case management model on the specialised palliative care multi-professional team (DKH funded)
  • Palliative Care for severely affected MS patients: a Delphi survey of healthcare professionals (DMSG)
  • Multiple Sclerosis and Palliative Care: Assessing Unmet Needs“ (Gemeinnützige Hertie-Stiftung)
  • Views on life of palliative care patients (DKH)
  • Advance Directive and Health Care Proxy – Strengthening cancer patient autonomy by improving surrogate decision making (CIO)
Reviewer (i.e.)
  • Palliative Medicine
  • Journal of Palliative Medicine
  • European Journal of Public Health
  • Zeitschrift für Palliativmedizin
  • PLOS One
  • Social Work in Health Care
  • Psycho-Oncology
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