Palliative care – emotional, spiritual and cultural care

Emotional care#

Your loved one will most likely have highs and lows throughout their illness. At times they might feel angry, upset or irritable; at other times they may feel very positive.

It is hard to give simple tips for dealing with a relative’s emotions, because every person and relationship is different, and you will know your loved one better than most. The person you are caring for may be thinking about difficult issues such as death and dying. Some of these things can be easier to talk about with someone more experienced, such as a professional from the palliative care team. You do not need to have all the answers.

Some things that may help include:

• listening, and being prepared to sit with the person and share upsetting thoughts and feelings
• telling them how much you care for them and want to help
• providing some time alone each day, if they wish
• asking what might make things easier, or whether there is anything they particularly want
• suggesting some enjoyable things to do together
• encouraging involvement in day-to-day life, such as the news and social activities
• remembering that it is normal for your relative to feel downhearted from time to time
• reminding your relative of the skills and roles of the palliative care team

Depression and anxiety#

Everyone has times when they feel low or flat. Sometimes the person or their carer becomes very concerned about what is happening and may become depressed or anxious.

Depression usually means a person feels sad, down or miserable most of the time, or has lost interest or pleasure in most of their usual activities, for a period of at least two weeks.

There are many types of anxiety disorder, and their symptoms differ, but some general signs include:

• feeling very worried or anxious most of the time, and finding it difficult to calm down
• feeling overwhelmed or frightened by sudden feelings of intense panic
• experiencing recurring thoughts that cause anxiety
• avoiding situations that cause anxiety, such as social events or crowded places
• ongoing difficulties such as nightmares or flashbacks after a traumatic event

If you or your relative have these feelings, let your doctor or the palliative care team know. A thorough assessment can be done so that appropriate steps can be taken to try to lessen the depression or anxiety.

When someone talks about ending their life#

People nearing the end of life might make remarks such as “I’ve had enough” or “no one should have to be in this situation”. These comments are not usually a specific or ongoing request to end their life, but they do call for a conversation to find out why the comment was made and whether the situation can be improved.

Sometimes a person does speak about, or make a request, to end their life. You can help by sitting with them and listening to the difficult things they are saying. If a specific request occurs, contact your palliative care service or your doctor, who can arrange the right support.

Spiritual care#

Spiritual care refers to any support related to questions about life’s meaning, depending on the person’s values and beliefs. It is much broader than formal religious practice, and the kind of care needed differs for every person.

If you are unsure of your relative’s spiritual needs, you or another person can start a conversation by asking what would help them or give them strength.

If the person usually attends religious services and this is no longer possible, you can discuss it with a local religious representative such as a minister, priest, rabbi or imam. Someone from the religious community may arrange to visit. Maintaining these contacts and familiar rituals can help you and your relative feel less isolated and still part of the community. Opportunities to take part in faith-based rituals or to seek religious counsel are all part of spiritual care, depending on the person’s wishes. In times of crisis, spiritual care can be very helpful.

If the person is not religious, helpful activities about life’s meaning may include reminiscing or carrying out a “life review” with you, family members or friends. This is an opportunity to tie up loose ends, to laugh and to cry, and to connect with the spirit of your relative. Some people choose to write a life review down as a memoir. Other ways of connecting with the “whole person” include music, art, literature, photos or conversation. A simple way into this discussion may be to ask: “What’s important for you now?” or “If you had one wish, what would it be?”

You can request assistance from the palliative care team at any time. For some people the formal services of a chaplain or pastoral care worker are appropriate; for others, a friend or family member may become their “spiritual companion”.

If you are the primary carer, remember that you may not be able to provide all the emotional and spiritual care as well as the physical care. It is okay to seek help from others. Pastoral or spiritual care workers are trained professionals, available as part of the palliative care team, who can help people work through their feelings. They can arrange visits from spiritual leaders such as ministers, priests, rabbis and imams, and can support others in caring roles to provide culturally sensitive spiritual care.

Cultural care#

We all have values, beliefs and customs, usually associated with our cultural backgrounds. It is important to let the palliative care team know about any specific cultural practices that matter to you and your relative. These may include matters of diet, personal hygiene, clothing, special or holy days, or other important rituals.

When a person is dealing with a serious illness or approaching the end of life, it is important that cultural values and needs are respected. A person-centred approach means you and your loved one are entitled to be treated with respect, whatever your cultural background, religion or sexual orientation.

If you or your relative have difficulty understanding the local language, the palliative care service can arrange an interpreter. Family or friends may sometimes help, but it is recommended that a professional health interpreter be used when discussing important health care information.

If you or your relative would prefer not to discuss the end of life or dying because of your cultural beliefs, let the palliative care team know, so that no offence or embarrassment is caused. If you have a hearing or speech impairment, ask your palliative care provider about extra help or relay and translating services.

Acknowledgment: Adapted from Hudson P and Hudson R 2012, “Supporting a Person who needs palliative care – a guide for family and friends”.

Where to get help#