Short summary

Based on the  American POLST (Physician Orders for Life Sustaining treatment) document, a Danish POLST model will be developed and tested with the aim to make sure that patients' and nursing home residents' wishes for end-of- life care are known, documented and legally binding.  

---

Rationale

Nurses and other healthcare professionals often experience that patients' and nursing home residents' wishes for end-of-life are unknown. Due to this lack of knowledge, patients and nursing home residents may risk resuscitation attempts and intensive care treatment against their wishes.

Living Wills can be registered by all adults, but the wishes are only guidance for the treating physicians if the patient is not assessed as unavoidably dying, and only about two percent of the Danish population has registered a Living Will. By autumn 2017 the Danish Parliament is processing a bill which will extend the Living Will to a Treatment Will making the wishes binding for physicians also if the patient is not unavoidable dying. However, it will still be a medical decision whether the patients' condition matches the wishes in the Treatment Will. In acute situations like cardiac arrest, a Treatment Will is not usable.

One of the challenges with decisions about end-of-life care is also to make sure that patients and nursing home residents have sufficient information about treatments, possible side effects and palliative options.

A number of international studies have shown that most patients with serious illnesses want to discuss level of life-sustaining treatment with health care professionals. However, studies have also show that conversations about wishes for end-of-life treatment often do not take place.

Therefore the aim of this study is to develop and test a document which can help to ensure that patients' and nursing home residents' wishes for end-of- life care are known, documented and legally binding.  

---

Description of the cohort

Patients from hospital wards and home care and nursing home residents with a serious illness or frailty which, based on a health assessment, make it plausible that they may die within 6-12 months. Participants will be recruited from institutions throughout the country. 

Data and biological material

Questionnaire data: patients/nursing home residents, physicians, and some nurses and family members.

Interview data: Patients/nursing home residents, physicians, nurses and family members.

Patient record data: treatment, hospital admissions, and mortality in a two-year follow-up period.

Collaborating researchers and departments

Steering committee:

Department of Anaesthesiology and Intensive Care, Vejle Hospital/Institute of Regional Health Research, University of Southern Denmark

• Associate professor Hanne Irene Jensen, PhD, MHSc, RN (project leader)
• PhD student Lone Doris Tuesen, MHs, RN

Department of Intensive Care, Holbæk Hospital, Denmark

• Researcher Manager Hans-Henrik Bülow, MD

Department of Surgery and Intensive Care, Head and Heart Centre, Aarhus University Hospital

• Nurse specialist Anne Sophie Ågård, PhD, MHs, RN

Collaborators:

Bakkegården Nursing Home

• Manager Helle Wittig, RN

Nr. Åby Medical Practice

• General Practitioner Sverre Strøm, MD

Legal Consultant

• Chief Lawyer Henrik Kristensen, Danish Health and Medicines Authority, Copenhagen

Advisory board:

Executive consultant Pernille Lennert, Department of Anaesthesiology and Intensive Care, Vejle Hospital

Manager of Centre for Shared Decision-making, chief physician Karina Dahl Steffensen, Vejle Hospital

Chief physician Lynge Kirkegaard, Department of Anaesthesiology and Intensive Care, Kolding Hospital

Medical Director Alan Kimper-Karl, Esbjerg and Grindsted Hospitals

Patient Sidse Lindberg, Fredericia

Relative Birthe Ømark, Horsens

Professor Erik Fromme, Boston, USA

General Practitioner Bruno Meldgaard, Odder

Lawyer Nanna Andersen, Danish Health and Medicines Authority, Copenhagen

Chief Physician Ove Gaardboe, Danish Society for Patient Safety, Copenhagen

Researcher Manager, Chief Physician Ole Hilberg, Medical Department, Vejle Hospital

Charge nurse Winnie Vivi Marotzke, Palliative Team, Vejle

Head of Secretariat Kirsten Søndergaard, National Association ”Life&Death”

Consultant Anna Wilroth, DaneAge Association

Community Nurse Malene Bæk Jakobsen, Aalborg Home Care Nursing