Emotions in terminal illness
People with a terminal illness often feel a range of emotions at different times throughout their illness, including:
* grief – for how their life has changed or for the things they can no longer do
* loneliness – even if they have a strong support network
These feelings can be difficult to live with, but they’re a normal response to having a terminal illness.
Patients may feel more accepting over time as they come to terms with their illness. But it’s common for these feelings to become stronger when someone is approaching the last weeks and days of their life.
Emotional (or psychological) distress is when someone feels unable to cope with their emotions. Emotional distress is common in people living with a terminal illness and their family and friends.
Patients with emotional distress might experience difficult feelings like those listed above. Some patients may also have conditions like depression or anxiety.
Delirium and emotional distress
Emotional distress is different from delirium, which is confusion that comes on suddenly.
Providing emotional care might be helpful for some people experiencing delirium. But it’s important to find the underlying cause, and to be aware of other effective ways to manage delirium.
Read more about delirium.
Causes of emotional distress
Many factors can cause emotional distress, including:
* physical symptoms such as pain or nausea
* difficult relationships
* loss of independence or worrying about being a burden
* fear of dying
* spiritual distress.
Assessing a patient’s emotional needs
How someone manages their feelings is unique to them, depending on their personality, identity, life experiences and relationships.
It’s important to assess how well a patient is managing emotionally, especially after changes in their diagnosis or care. Feelings such as fear or sadness can affect how someone is able to communicate and make decisions. Emotional distress can reduce the quality of patients’ lives and affect their physical health.
The following things may be helpful when assessing a patient’s emotional needs:
* Spending time with the patient and giving them the space to talk. Be aware they may have good and bad days.
* Talking to them about how they’re feeling and coping, even when they do not seem distressed. Remember to ask open questions and make sure you’re actively listening.
* Asking the patient to rate how distressed they feel from zero to ten. Zero being no distress and ten being the worst distress imaginable. Some services may use screening tools, such as questionnaires.
* Speaking to their GP, specialist nurse or district nurse. They can refer them to local psychological support services for further assessment and support.
Read more about good communication in palliative care.
There are lots of ways you can support a patient with their emotions:
* Take time to get to know them and understand their feelings and experiences. This can be challenging if you’re working shift patterns or do not see the same patients regularly. But even small gestures might help you get to know the patient better.
* Encourage them to talk about their fears and worries in a calm, private and safe environment. Listening actively and without judgement is important for the patient to feel safe and heard.
* Acknowledge how they’re feeling and find out how they prefer to be supported emotionally. Some patients prefer a more upbeat approach, while others may want you to just be there and listen.
* Do not try to fix their emotional problems. Asking open questions and allowing the patient to talk about how they’re feeling, is likely to be more helpful.
* Help them relax by enabling them to do activities they enjoy, like listening to music or looking at photos. When they’re relaxed, they might find it easier to talk about their emotions.
* Offer a hug or hold their hand. If it’s appropriate and they consent, this can help them to feel safe and supported.
* Be prepared that they might cry. Crying is a common emotional response and sometimes an expression of emotional distress. You might feel unprepared especially if someone cries suddenly, but do not feel pressured to ‘say the right thing’. Just being there with the patient can help them. Showing empathy, offering physical touch like the above, and offering a chance to talk, are good ways to support a patient that’s crying.
* Encourage them to think about how they want to be cared for. This may help them feel more in control, and help others understand what’s important to them. Share Marie Curie’s information for patients on planning care in advance.
* Suggest they create a memory box ‒ this could include objects, letters or gifts for the people close to them. They could also make videos or sound recordings.
* Attend communication skills training. This can help you learn from your experiences and develop your confidence.
All emotions are valid and can be useful for the patient at different times in their illness. Share Marie Curie’s information for patients on emotional and spiritual pain.
Read more about how to support patients with advance care planning.
Support from professionals
The patient might benefit from talking to someone who is specially trained to listen and provide emotional care , including these professionals:
* Social workers – support patients and the people important to them with emotional and social issues. They can also help with accessing social care, benefits, and support from community organisations.
* Psychologists – help patients explore and understand their thoughts and feelings, and find different ways of coping.
* Counsellors – allow patients to explore their emotions in a safe, non-judgmental space.
* Chaplaincy, spiritual care specialists and faith leaders – help patients find meaning and purpose and explore any religious or spiritual needs.
* Specialist palliative care services – help to manage medical problems and reduce worries about symptoms such as pain and nausea.
* Complementary therapists – help with relaxation and reduce anxiety through therapies such as acupuncture or massage. Share Marie Curie’s information for patients on complementary therapy.
Speak to the patient’s GP, palliative care team or local hospice for access to these professionals.
Emotional care for family and friends
Those close to the patient will also have lots of emotions. They may need support to understand and cope with these.
Be aware that the patient’s family and friends can become isolated, as a lot of their time might be spent with the patient. They may be at increased risk of depression, anxiety and stress.
There are different ways you can support them:
* Get to know them and give them time to speak about how they’re feeling.
* 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 and practical help they could get, such as counselling or respite breaks. Share our information on finding emotional support as a carer.
Read more about talking to family and friends.
Taking care of yourself
Caring for someone with a terminal illness is emotionally challenging. It’s common to build a relationship with the person you’re caring for. You may feel a range of emotions including sadness, guilt, anxiety and anger when you’re working with them.
You might feel strong emotions when they die. It can also trigger memories of people you know who have died, or people you care about in your personal life.
If your feelings are affecting your work or personal life, it’s a good idea to get support.
You could consider:
* talking to your manager
* talking to other colleagues – they might have had similar experiences
* seeing a counsellor or psychologist
* accessing clinical supervision.
There are support and wellbeing services for staff working in NHS health or social care:
The British Association of Counsellors and Psychotherapists – information on talking therapies and a directory of therapists.
Healthtalk.org – videos and interviews of people talking about their feelings in response to having a terminal illness.
back to top