Spiritual end-of-life care in nursing homes
We are currently conducting a study that aims to show which
spiritual care is given in Dutch nursing homes, and which
shortcomings are identified. We also attempted to define spiritual
care.
Spiritual care is a shady area in palliative care, mainly because
different researchers and caregivers understand it differently, much
more so than e.g. quality of life and dignity. Especially in the US,
'Spirituality' is often associated with religion. For this reason
alone I would prefer to forget about the term 'spirituality' and use
'meaning' in stead, because the literature seems to indicate
that spirituality and religion should be understood as related, but
distinct entities. We chose not to do so just yet for this project
though, to clearly show in which realm this project belongs.
Spiritual care is important. It is mentioned explicitly in the
WHO definition of palliative care, and studies show that it is
related to quality of life, the primary outcome in palliative care.
Principal researcher of this study is Marie-José Gijsberts, MD,
physician in the unit for short-term terminal care in nursing home
St. Jacob. Van der Steen and Echteld switch leadership for
different parts of the study: Echteld currently is leading parts 1-3
(see Methods below).
Investigators
MJHE Gijsberts, MD
JT van der Steen, PhD
MA Echteld, PhD
MT Muller, PhD
Prof L Deliens, PhD
Prof MW Ribbe, MD, PhD
Background
In this study we describe spiritual end-of-life care in Dutch
nursing homes. Although nursing home physicians are concerned with
end-of-life care and bear final responsibility for the care, it is
unknown if and how nursing home physicians assess and view patients’
spiritual needs, how they provide spiritual care, how they
deliberate with other caregivers and when and to whom they refer to.
It is also unknown if and how spiritual care is provided to nursing
home residents in different stages of dementia and to their
families, and what the content of that care is. We aim at
understanding if and how physicians provide spiritual care to
nursing home residents -including residents with dementia- and their
relatives.
Methods
A mixed-methods design is employed, using both qualitative and
quantitative research methods.
- A systematic review of literature on instruments
measuring spirituality at the end of life, aiming at providing a
set of measurable subcomponents of spirituality.
- A focus group study with Dutch nursing home physicians
to understand the concepts’ content and usefulness in practice
for end-of-life care to residents and their families.
- The results of the systematic review and focus group
study will be used to develop a survey for a representative
sample of Dutch nursing home physicians, to quantify spiritual
end-of-life care. The results will be linked to the spirituality
of the nursing home physician.
- In the ongoing ‘Dutch End of Life with Dementia Study’
associations will be assessed of characteristics of nursing
home, nursing home physician and residents with actually
provided spiritual end-of-life care.
- The review and the focus group study will provide key
concepts to frame observations in an ethnographic study in
Dutch nursing homes for the in-depth study of the process of
physicians’ spiritual care delivery.
- All results will contribute to the development of
recommendations and guidelines for nursing home physicians to
improve and provide high quality spiritual end-of-life care.