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Organ donation after euthanasia and the GP Han Mulder, MD PhD GP

The essence of ODE ODE Organ donation after euthanasia ODET Organ donation after euthanasia from home

Han Mulder, Landelijke Huisartsen Vereniging Peter wil organen kunnen doneren Han Mulder, Landelijke Huisartsen Vereniging

Introduction Patients are requesting organ donation after euthanasia (ODE) Current practice, which developed spontaneously, raised ethical, legal and social issues A guideline was prepared focusing on the situation of a patient in the final phase of his life with the involvement of a GP

Research question What experience do GPs have with ODE and what questions do they have about it?

Methodology Healthcare professionals, patient organisations and relatives of now deceased ODE patients were involved One element of this were semi-structured interviews with GPs, with and without experience of ODE

Methodology Semi-structured interview Qualitative or in-depth interviews with interview schedule with questions with general and closed formulation, further questioning for detailed information Received flow chart and patient information

Methodology Construct validity Internal validity External validity Precise question formulation with testing of whether this produced the answer we sought Internal validity Fixed interview schedule with open and closed questions, attempting to evaluate different aspects of experience External validity Aselect group of GPs, however group with experience limited, without experience via call to participate. Generalizability of sample. Ecological validity Familiar home environment

Methodology Structured interview Semi-structured interview Unstructured interview Focus group Construct validity Yes No External validity Internal validity Ecological validity

Results Interviews with eight GPs with experience of ODE ODE experience between 2013-2015 Interviews with ten GPs without experience of ODE 2016, eastern region of the Netherlands through doctors organisation

With experience Main difficulties identified: Time taken by procedure in hospital Determining death Who decides what Differing legal agreements with the hospitals

With experience Expressed a need for good training courses Had mixed feelings about presence of donation staff and other unfamiliar healthcare professionals, as well as about the impact on the patient and family being greater than expected

Without experience Main difficulties identified: Death in the hospital setting and the burden this places on the patient and family The degree to which this can be explained

Without experience Main difficulties Also foresaw problems in relation to the intimacy of the end of life care and bringing the topic up for discussion Indicated that it was important for adequate information to be provided to patients, family and GPs, for example via thuisarts.nl.

Conclusion GPs with experience of ODE mainly had questions about uncertainties during the procedures whereas GPs without experience were mainly concerned about how the euthanasia process would be experienced. Follow-up research seems advisable.

Guideline ‘Organ donation after euthanasia’ NTVG Guideline December 2017