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Spiritual care is an important part of palliative care. Having a terminal illness often leads people to think about their lives in new ways, and their spiritual needs may change. All health and social care professionals can help explore the patient's spiritual needs, and identify when someone might need more support.
Spirituality means different things to different people. For example, it can be about searching for meaning and purpose in life. Or it can mean finding the best relationship with ourselves, others, society or nature.
For some people spirituality might involve religion, but it's not the same as religious beliefs. Spiritual issues can affect everyone – people do not need to be religious to have spiritual needs.
Spiritual needs are different for everyone and can change over time. These can include the need:
- for meaning, purpose and value in life
- for love
- to feel a sense of belonging
- to feel hope, peace and gratitude.
Spiritual needs are often met as people find ways to express themselves. They may also find ways to express their feelings towards others, their place in the world or towards a religious figure.
Meeting spiritual needs
People do different things to meet their spiritual needs, depending on what's important to them. This can change over time, and might include:
- spending time with the people important to them
- spending time in nature
- spending time on hobbies
- following religious customs, like prayer or going to religious services.
Palliative care means caring for the whole person, including caring for their spiritual needs. Someone's spiritual needs may change when they're diagnosed with a terminal illness:
- Patients may feel a sudden need to repair a broken relationship, or deal with unfinished business.
- Patients might think about death, loss and grief in new ways.
- Patients and those important to them may need support to make sense of what's happening.
- Some patients will want to reflect on the meaning of life, perhaps more so than at any other time in their life.
- Spiritual practice, including religion, may become more important. People may also have spiritual or religious needs related to their funeral plans.
Spiritual needs are connected to physical, social and emotional needs.
Spiritual wellbeing is often described as feeling at peace, while spiritual distress is seen as a state of suffering. This could be due to unresolved needs and questions, or the inability to find meaning and purpose.
If someone's spiritual needs are not met, this can cause spiritual distress. Spiritual distress can affect someone's physical and mental health. Some studies suggest that spiritual distress can increase suffering at the end of life.
Someone might be in spiritual distress if they are:
- searching for meaning, for example asking questions such as: "Why is this happening?", "Why me?", "Who am I?" and "How will I be remembered?"
- becoming more withdrawn and isolated
- afraid of being alone
- refusing care
- saying they feel scared or worried
- feeling depressed or not at peace.
Causes of spiritual distress
There are different things that can cause spiritual distress in people with a terminal illness:
- Relationships – loss of role in the family, no longer being able to support loved ones, or feeling lonely. Unresolved issues within relationships can also cause spiritual distress.
- Loss of independence – loss of identity or worry about being a burden.
- Fear of dying – worry about the dying process and what happens after you die.
- Loss of control – over physical and mental health, the future and life in general.
- Being unable to find meaning in life.
Those close to the patient might experience spiritual distress too.
Spiritual assessment tools
Assessment tools can help start the conversation around a patient's spiritual needs. One of these is the HOPE tool, which covers some basic topics to focus on. There are some example questions for each topic below:
- What are your sources of hope, strength, comfort and peace?
O: Organised religion
- Do you have a religion or faith?
- How important is your religion or faith to you?
P: Personal spirituality and practices
- Do you have personal spiritual beliefs that are separate to organised religion? What are they?
- What aspects of your spirituality or spiritual practices do you find most helpful to you personally?
E: Effects on medical care and end of life issues
- Has your illness stopped you doing things that give your life meaning and purpose?
- Are there any specific practices we should know about when we care for you?
There are other assessment tools available, including FICA (faith, importance, community, address). Download PDFs of the HOPE and FICA assessments.
Other ways to assess spiritual needs
Many patients might not understand what spirituality is or what it means to them. Spiritual assessment can be carried out in other ways too:
- You could start the conversation with more general and open-ended questions. For example: "What's important to you?", "What gives you hope?" and "What was important to you that – because of your illness – you're now unable to do?"
- Try to encourage patients to talk about how they're feeling.
- Listen for clues that the patient is struggling with spiritual issues. They might speak about searching for meaning, feelings of isolation or fear of the unknown.
- Chaplains and those in spiritual care roles, are trained to assess for spiritual distress and can help to identify the patient's spiritual needs.
All health and social care professionals can provide spiritual care. The following things can help you provide good spiritual care to patients:
Talking about spiritual needs and concerns
- Get to know the patient – they're more likely to discuss spiritual concerns when they know and trust someone. Ask what's important to them and what you can do to help.
- Take time to understand your own spiritual beliefs – you could do this by asking yourself the questions from the HOPE tool. This can help you think about what spirituality means to you, which could help you talk to patients.
- Be aware of clues the patient may be struggling with spiritual issues. They might speak about searching for meaning, feeling isolated, hopeless or fearing the unknown.
- Some patients may be unsure of how to raise the subject. They may ask a general question, such as "where do I go from here?" It can be easy to misunderstand what someone is asking, so gently check what they mean.
- Some patients will want to talk about their spiritual concerns. Be guided by the patient and give them time to explore their worries.
- Listen without passing judgement or dismissing their concerns. Try to listen and understand without imposing your own beliefs.
- Try not to feel that you always need an answer – questions about life and its meaning are complicated. Just being with the patient and listening can benefit them.
Helping patients meet their spiritual needs
- Some patients will need practical help to meet their spiritual needs. For example, they might need help with arranging to go to a religious service, making funeral plans, seeing a faith leader where they're staying, or seeing family and friends. Share Marie Curie's information for patients about planning their own funeral.
- Patients may have spiritual needs relating to how they wish to be cared for. You could help them record these in an advance care plan. Read about advance care planning.
- Encourage the patient to find their own coping techniques, especially ones that have worked for them in the past. This may include doing things they enjoy, writing down thoughts and feelings, and finding ways to relax such as listening to music or having a massage.
Be aware that some patients might have all their spiritual needs met by carrying out their own spiritual practice.
Ask a specialist like a chaplain or spiritual care coordinator for help, if you're uncomfortable having these conversations.
Share Marie Curie's information for patients, family and friends on emotional and spiritual pain.
Read more about good communication at the end of life.
The patient might benefit from speaking to a professional about their spiritual needs and concerns. Ask them if they'd like other support. They could speak to:
- a chaplain or spiritual care coordinator – trained specialists who work with patients to help them find meaning and explore what's important to them
- a psychologist
- a counsellor
- a faith leader
- a specialist palliative care social worker
- others in similar situations in a local support group.
The local hospital, hospice or palliative care team may have a chaplaincy or spiritual care service. Patients do not need to be religious to have this support.
Those close to the patient may also experience spiritual distress or have new and unmet spiritual needs.Carers can become isolated due to the amount of time they spend with the patient. They may be at increased risk of depression, anxiety and stress.
Many of the ways to provide spiritual care to patients can also be used to help those around them. But there are some other ways you can provide support:
- Encourage them to look after their own wellbeing. Acknowledge the care they're giving is important, but they need to look after themselves too.
- Be aware that they may feel unable to take time for themselves. Let them know there are small things they could do to restore their energy. This could be talking to a friend, going for a walk, reading or spending time outside.
- Make them aware of emotional, practical and spiritual support they could get. This could include counselling, respite breaks and accessing chaplaincy or spiritual care services. Share Marie Curie's information on coping with feelings as a carer.
Read more about talking to family and friends.
Caring for people with a terminal illness can be challenging. It might prompt you to ask questions about your own beliefs, and look for meaning and purpose in your life.
Take time to look after your own spiritual wellbeing. This could involve:
- spending time with family and friends
- physical activity
- spending time in nature
- making time for quiet moments of rest
- following religious practices.
If you're struggling, you could speak to your manager, a chaplain, counsellor, psychologist or faith leader. Find out if Clinical Supervision is available to you – this can be a useful way to explore your spiritual and general wellbeing.