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Palliative cancer care - general issues - Management
How should I address the needs of the family and carers?
- Family members and carers should be offered the opportunity for their needs (e.g. for support and information) to be assessed separately from those of the patient.
- Whenever possible and appropriate, family members and carers should be invited to accompany the person during clinical encounters and should be involved in decisions about treatment and care, in accordance with the individual's wishes.
- Family members and carers should be made aware of, and have easy access to, local sources of information, advice, and support designed to meet their own needs.
Clarification / Additional information
- The needs of the family and/or carers should particularly be addressed at stages in the patient pathway acknowledged as especially demanding, and when extra help may be needed. Consider that people of different ethnic backgrounds or cultures may have specific preferences regarding family involvement [NICE, 2004].
- Sources of support include patient and carer support and advocacy services, counselling and chaplaincy services, and ethics support networks [GMC, 2010].
- Family members caring for their relative at home may experience a number of concerns [Doyle et al, 2004]:
- Fear of the person dying.
- Anxiety about an emergency occurring (e.g. what constitutes an emergency and how to deal with it).
- Feelings of inadequacy with regard to caring for the person at home (e.g. lack of knowledge about how to make the person comfortable or appropriate lifting techniques).
- Suppression of their true emotions in order to protect the person they are caring for.
- Financial worries.
- Altered role and lifestyle.
- The demands of being a carer can sometimes present as physical symptoms (e.g. fatigue, weight loss) [NICE, 2004].
- Interventions to help the family include [Doyle et al, 2004]:
- Facilitating communication between the person and their family and healthcare professionals.
- Recognizing stress in other areas (e.g. work, coping with children).
- Education to teach them the skills and knowledge to provide the care necessary to enhance the person's comfort.
- Discussion of their relative's pain management, to reduce anxiety regarding potential addiction or tolerance.
- Encouragement of expression of fears, concerns, uncertainty, and emotional strain.
- Provision of information regarding the person's death and what to expect.
Basis for recommendation
- This recommendation is based on guidance from the National Institute for Health and Clinical Excellence [NICE, 2004], and the General Medical Council's guidance for doctors, Treatment and care towards the end of life: good practice in decision making [GMC, 2010].
- Cancer can affect the whole family, who often provide vital support for the person who is receiving palliative care [NICE, 2004].
- Carers can feel helpless and frustrated when they are unable to provide comfort to their relative, but often do not express their own needs [Doyle et al, 2004; NICE, 2004].
- Healthcare providers may not always teach specific care-giving skills, which would be valuable to families [Doyle et al, 2004].
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