Emotional care

When someone finds out they have a terminal illness, it’s normal to feel some, or all, of the following at different times:

• shock
• fear
• anger
• resentment
• denial
• helplessness
• sadness
• anxiety
• frustration
• relief
• acceptance.

People might also feel isolated and alone, even if they have a strong support network.

People may feel more accepting over time as they come to terms with their diagnosis. But it’s common for any, or all, of these feelings to become stronger when someone is approaching the last few weeks and days of their life.

These feelings can be very difficult to live with, but they are part of a normal response to having a terminal illness.

Find out more about stages in the emotional response to dying.

Emotional (or psychological) distress is when someone is overwhelmed by their emotions and thoughts. Emotional distress can present as depression, anxiety or panic.

Lots of different factors can contribute to emotional distress including:

• physical symptoms such as pain or nausea
• social isolation or difficult relationships
• loss of independence
• fear of dying
• spiritual or existential distress.

Emotional distress is common in people living with a terminal illness, as well as those important to them such as partners, family members and close friends.

It can be difficult to assess how well someone is managing. Encourage them to talk about how they’re feeling and listen without judgement. Some services use screening tools including questionnaires. Asking the person to rate how distressed they are feeling from 0-10, with 0 being no distress and 10 being the worst distress imaginable can help to identify how someone is feeling.

It’s helpful to be aware of your local support services before you assess someone’s needs. This will help you to find the best help as quickly as possible.

It can feel daunting to start a conversation with someone about their emotions. There are things you can do to help you both feel more at ease. Activities such as listening to music, massage, looking at photos, or anything the person enjoys doing, could help them to feel more relaxed and able to talk about their emotions.

All emotions including anger and denial are valid and can be useful for the person at different times in their illness. You might find it helpful to share our information for patients on emotional and spiritual pain.

Taking time to get to know the person and understand their experiences and individual circumstances helps to build a strong relationship. This can be challenging if you are working shift patterns or don’t see the same patients regularly. If it’s appropriate and the person consents, giving them a hug or holding their hand can help them to feel safe and supported.

Encouraging them to talk about their fears and worries can help them to feel less anxious.

It can be helpful to keep a positive attitude, but don’t dismiss how the person is feeling. You can ask the person how they prefer to be supported emotionally – some people prefer a more ‘upbeat’ approach, while other people may prefer you to just be there and listen to them.

It’s common for someone with a terminal illness to feel sad and anguished about the people they are going to leave behind when they die. Encouraging them to prepare a memory box is a way to help them to know that they’ll still be part of their loved ones’ lives after they die. A memory box can be a place to hold objects, letters and gifts for their loved ones. They can also prepare videos or sound recordings to be stored digitally on a memory stick or online.

People might be worried about losing control as their illness progresses. Encouraging someone to express their wishes about their care in advance can help them feel more in control. It can also help health professionals and those close to the person to understand what’s most important to them. You might find it helpful to refer to the information in this app on anticipatory and advance care planning.

The person might benefit from talking to someone who is specially trained to listen and provide emotional care, including these professionals:

• Social workers – support people and those around them with emotional and social issues and can help them access local welfare services and support from community organisations.
• Psychologists – help people explore and understand their thoughts and feelings and find different ways of coping.
• Counsellors – allow people to explore their emotions in a safe, non-judgmental space.
• Chaplaincy and faith leaders – help people find meaning and purpose and explore their 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.

All of these may be available through the person’s local hospice or G

Carers, partners, family members and friends may also have unmet emotional needs as they come to terms with their loved one’s illness and death. Carers can become socially isolated as a lot of their time is spent with the person with a terminal illness. They may be at increased risk of depression and anxiety.

Getting to know the family and allowing them to open up about their emotions can be helpful. Acknowledge that the care they’re giving their loved one is very important but encourage them to look after their own wellbeing too.

There are many sources of support for carers. Marie Curie provides useful information on coping with feelings as a carer.

Content for this section is drawn from two sources:

Some elements of this section are summarised and adapted from Macmillan Foundations in Palliative Care (FIPC) materials 2020, published by Macmillan Cancer Support, 89 Albert Embankment, London SE1 7UQ, United Kingdom. © Copyright Macmillan Cancer Support 2020, produced by the Digital Health & Care Innovation Centre (DHI). Macmillan Cancer Support accepts no responsibility for the accuracy of the content, which is based on UK practice and guidelines at the date of UK publication; nor for the context in which the content is published; nor for any adaptations made for local use. The content as published in this app/website is solely the responsibility of the Digital Health & Care Innovation Centre, Inovo Building, 121 George St, Glasgow G1 1RD.

Other elements are drawn from Marie Curie Cancer Support:

© Copyright Marie Curie Cancer Support 2020, produced by the Digital Health & Care Innovation Centre (DHI). This content is based on Marie Curie Foundations in Palliative Care (FIPC) materials 2020, published by Marie Curie Cancer Support, 89 Albert Embankment, London SE1 7UQ, United Kingdom. Marie Curie Cancer Support accepts no responsibility for the accuracy of the content, which is based on UK practice and guidelines at the date of UK publication; nor for the context in which the content is published; nor for any adaptations made for local use. The content as published in this app/website is solely the responsibility of the Digital Health & Care Innovation Centre,Inovo Building, 121 George St, Glasgow G1 1RD.