Patients receiving palliative care and their loved ones are confronted by the fact of human mortality. This awareness can have a significant impact on these patients’ peace of mind and emotional state, as a result of the effects of illness, awareness of impending death, and perhaps fear of death. The national guideline ‘Existential and Spiritual Aspects of Palliative Care’ provides insights and tools for recognising and discussing the existential and spiritual questions and needs of patients and their loved ones. Objective and scope A guideline is a recommendation intended to provide support in addressing the most important problems actually encountered in daily practice. This guideline is based on the expertise of the members of the working group, and as far as possible is supported by evidence and consensus-based research.
The guideline Existential and Spiritual Aspects of Palliative Care makes recommendations on assessment, care and accompaniment for all patients (above 18 years) who are receiving palliative care and for whom questions and/or problems have arisen concerning existential and spiritual matters, regardless of the underlying condition and in every care setting. The objective of the guideline is to improve the quality of care provided.
This guideline has been written with a view to providing support to all palliative patients regardless of their philosophy of life, religion or culture. When a patient's experience and choices concerning end-of-life care are influenced by a background other than traditional local religion and culture, please consult, in addition to this guideline, supplemental information relevant to patients you encounter in your cultural context (e.g. Pharos (Pharos is the Dutch national centre of expertise on health disparities)).
Target audience This guideline is primarily intended for all professionals who provide palliative care, such as general practitioners (GPs), specialists in elderly care medicine, other medical specialists, nurses, nurse specialists, physician associates, spiritual counsellors, Netherlands Comprehensive Cancer Organisation advisors, social workers, psychologists and physiotherapists. The guideline is also relevant to care providers from other disciplines and volunteers who work with people receiving palliative care. Anyone who is attending to the physical and psychosocial well-being of patients also has to be aware of the existential issues that may arise. When determining appropriate care and treatment it is crucial to know what people find important and what makes their life meaningful. This guideline is therefore based on the premise that existential and spiritual support is the responsibility not only of spiritual counsellors but of all care givers. This is a joint, interdisciplinary responsibility.
The patients' perspective was also included during the formulation of this guideline, as described in the next section. However, as the guideline has been written primarily for the professionals listed above, patients may find it less easy to read.
Patients' perspective Patient input was incorporated during all phases of the development of this module. Among the members of the guideline working group were two patient representatives. Patient input is necessary for the development of high-quality guidelines, as good care satisfies the wishes and requirements of both patients and care givers.
The following approach was used to obtain information and to incorporate the interests of patients:
At the start of the guideline development process, patient representatives submitted problems.
The patient representatives were present at all meetings of the guideline working group.
The patient representatives evaluated the draft texts so as to ensure that the patients' perspective was optimally represented in the formulation of the final text.
Feedback was sought from the Dutch Federation of Cancer Patient Organizations (NFK) during the consultation phase.
Existential and spiritual The terms existential (matters of meaning and purpose) and spiritual are used synonymously in this guideline. We use the European Association for Palliative Care (EAPC) consensusbased definition: ‘Spirituality (or: a sense of meaning and purpose) is the dynamic dimension of human life that relates to the way persons (individual and community) experience, express and/or seek meaning, purpose and transcendence, and the way they connect to the moment, to self, to others, to nature, to the significant and/or the sacred.’