Good practice guideline: care for spiritual distress (existential crisis)

Evaluate the impact of the illness on a person and their family, and the causes of the person’s symptoms (often multifactorial). Everyone is different and whilst some people experiencing spiritual distress may exhibit very clear signs and symptoms, others may internalise their experience and distress may not be obvious.

Common signs may include:

• tearfulness, weeping
• withdrawal, lack of interest
• withdrawal from significant relationships
• restlessness, being unable to settle
• anger at self, family, medical staff or God
• abandonment of deeply held values and beliefs or a search for meaning and answers from religious or scientific sources
• fear (of being alone, falling asleep etc)
• little peace of mind, perhaps because of feelings of limited choices or loss of identity
• intractable symptoms, reported symptom severity greater than might be anticipated for the condition, symptoms unresponsive to usual management.

Explain and explore the person’s understanding before offering support or interventions. Understanding what matters to an person in their life is vital. It’s about having meaningful conversations with the person, their families and carers.

It is important to remember that some people won’t understand what is meant by spiritual needs and may confuse spiritual with religious. Take time to get to know the person. Explore their hopes and fears, their values, beliefs and culture. Ask what and who is important to them and what you can do to help.

Listen attentively and affirm the person’s values and beliefs. If appropriate, explore their current thoughts and feelings focusing on fears and anxieties.

Staff can refer to the Department of Spiritual Care (or a Registered Chaplain) for advice, and specialist support and interventions.

Key points for managing spiritual distress should include:

• ensuring that spiritual care is offered in a timely and compassionate way as an integral part of a holistic approach to health within the framework of the person’s values, beliefs or philosophy of life
• listening to the person’s experience and the questions that may arise from their diagnosis or treatment
• enquiring gently regarding, and respecting, values and beliefs including any religious or cultural needs. Such needs will be different for each person, even within belief and faith groups, and should not be assumed
• affirming the person’s humanity, protecting the person’s dignity, self-worth and identity
• encouraging relationships and, where appropriate, supporting the person to consider the need for forgiveness or reconciliation (either with personal life choices or events, or those of others).
• encouraging and supporting the person, where appropriate, to consider ’thank you‘, ’sorry‘ and ’goodbye‘ conversations
• reassuring the person that they will still be aware of the presence, touch, and speech of those closest to them even when they are no longer able to find the strength to reply and time is short
• encouraging family and friends to remain present, through physical contact such as holding a hand, and continuing to speak, being mindful that the dying person may well be hearing the conversations, as this will offer reassurance to the person

People can gain comfort and benefit from practising their faith, and having their religious and cultural needs recognised, respected, and met. Representatives from the person’s own faith or belief community may be best placed to offer spiritual support. Consent to refer an person to a faith or belief representative may be given, at any time throughout the care process. In exceptional circumstances, where informed consent is impossible to obtain, (eg if an person is unconscious or unable to give consent) then the views of carers, family and staff should be sought before referral, and common sense should prevail.

It is best practice to frequently review the impact of treatment, including spiritual care management approaches. Assessment of a person’s spiritual needs should be undertaken at key points during the person’s journey.

Although there are several tools available to assess spiritual well-being, observation by staff and by encouraging the person to share their personal / life stories are widely believed to be the most useful approach.

Personal life stories can help individuals shift their focus away from illness and fears, enabling them to recognise that their life and identity are richer and more meaningful than their current situation. By eliciting and honouring these stories, staff can assess a person’s overall well-being, whilst also remaining attentive to signs of spiritual distress:

• questioning of, or inability to engage in, spiritual or religious practices
• frustration, fear, hurt, or doubt
• feelings of loneliness and isolation
• lack of hope or feeling life is not worthwhile
• feelings of losing control or loss of purpose
• emotional suffering such as lack of meaning, guilt or anger
• low emotional state or mood
• expression of a desire for death.

• It is important not to make unwarranted assumptions, to listen actively to the person and to respond to non-verbal and verbal cues.
• Be aware of clues that the person may be struggling with spiritual issues. They might speak about searching for meaning, feeling isolated, hopeless or fearing the unknown.
• Some people will want to talk about their concerns and fears. Be guided by the person and give them time to explore their worries.
• Listen to understand what the person is saying. Listen without passing judgement or dismissing their concerns.
• Staff should never impose their own values or beliefs on the person.
• Try not to feel that you always need an answer. Questions about life and its meaning are complicated. Just being with the person, being present and listening can benefit them.

1. World Health Organization. 2016. Planning and implementing palliative care services: a guide for programme managers