Short summary

One of the barriers for providing high quality end-of-life care is that patients often have not been asked about their values and wishes. Via interviews with patients who have recently been declared terminally ill the aim of the study is to identify treatment and organizational facilitators and barriers for provision of high quality care and treatment at the end of life.

Rationale

High quality of life is associated with the perception of living a meaningful life. Illness and age-related impairment can challenge the possibilities, but quality of life, also at the end of life is, among other things, dependent on whether the treatment and care offered is in accordance with the individual patient's needs and wishes. However, one of the challenges is that patients often have not been asked about their wishes. This means that a large group of patients may not be offered specialized palliative treatment, and that overtreatment may occur, as a decision about level of treatment in acute situations such as cardiac arrest has often not been made.

The aim of the study is to examine patients' and relatives' experiences of the healthcare system in the time before a terminal declaration to identify treatment and organizational facilitators and barriers for provision of high quality care and treatment at the end of life.

Description of the cohort

Patients from the Region of Southern Denmark who recently have been assessed as terminally ill.

Data and biological material

Interviews with 40 patients and relatives

Collaborating researchers and departments

Medical Department, Vejle Hospital

• Helen Bruun

Hospital of Southern Jutland, University Hospital of Southern Denmark

• Christian Backer Mogensen

Hospital of South West Jutland, University Hospital of Southern Denmark

• Line Emilie Laugesen

Odense University Hospital

• Søren Mikkelsen

The Palliative Team, Lillebaelt Hospital, University Hospital of Southern Denmark

• Annette Hygum

Nr. Åby General Practice

• Sverre Maintz Strøm

Middelfart Municipality

• Jan Barasinski

Patient representative

• Mona Muusmann Pedersen

Citizen representatives

• Steen Schou and Anne Marie Jespersen