Palliative care - general issues: Scenario: Management approach
Last revised in April 2020
Scenario: Management approach
From age 16 years onwards.
How should I assess and manage the person's physical symptoms?
- Assess the person's physical needs at key points during the course of the illness (for example at the time of diagnosis, around treatment episodes, as treatments end, at the time of a relapse, and when death is approaching).
- Assess and manage the person systematically (for example assess symptoms, set treatment goals, review regularly, and refer if necessary).
- Enquire about symptoms, rather than waiting for the person to report them.
- Determine the impact of each symptom on the person's life by enquiring about time of onset, exacerbating factors, and effects on everyday life (such as sleep disturbance).
- Even if cancer is the underlying cause, different mechanisms may be responsible for the symptom (for example vomiting due to hypercalcaemia or gastric outflow obstruction).
- Bear in mind that all symptoms may be made worse by insomnia, exhaustion, anxiety, and depression.
- Ensure that any prescribed drug treatment is as pragmatic and straightforward as possible, avoiding medication which is no longer required, for example statins.
- Do not delay starting treatment as symptoms become more difficult to manage the longer they are left untreated.
- If a symptom is persistent, prescribe regular prophylactic treatment as opposed to treatment on an 'as required' basis.
- Discuss and agree on achievable goals with the person.
- Refer to a specialist if a problem occurs which is outside the expertise of the primary care team.
Basis for recommendation
These recommendations are based on guidance from the National Institute for Health and Care Excellence [NICE, 2004; NICE, 2015], expert opinion from the literature based on clinical experience [Regnard, 2010; Twycross, 2014], and the General Medical Council guidance for doctors, Treatment and care towards the end of life: good practice in decision making [GMC, 2010].
- A qualitative study found that doctors tend to underestimate the severity of symptoms (for example dyspnoea) and this is associated with under-treatment of those symptoms [Roberts et al, 1993].
- Expert opinion in a review article on palliative cancer care is that symptom management to optimize quality of life is the foundation of cancer care, irrespective of the stage of the disease or the person's chemotherapy regimen [Reville et al, 2009].
How should I assess and manage the person's psychological needs?
- Assess the person's psychological state at key points during the course of the illness (for example at the time of diagnosis, around treatment episodes, as treatments end, at the time of a relapse, and when death is approaching).
- If the person or their carers have significant levels of psychological distress, offer prompt referral to specialist psychological care services.
- The appropriate psychological intervention will depend on the person's current and previous psychological problems, the level of support available, and their prognosis.
- Psychological assessments and interventions should be undertaken somewhere that is quiet, comfortable, and private.
- Staff providing psychological care should be adequately trained and supervised, and mechanisms to ensure support for staff should be available.
- Emergency psychiatric interventions should be sought for people with severe mental health problems.
Basis for recommendation
These recommendations are based on guidance from the National Institute for Health and Care Excellence on improving supportive and palliative care for adults with cancer [NICE, 2004].
- Around 50% of people with cancer experience anxiety and depression around the time of diagnosis which is significant enough to adversely affect their quality of life.
- In the year after diagnosis, 10% of people have symptoms that require specialist intervention by psychiatric or psychology services.
- Around half of people with advanced disease experience anxiety and depression.
- Professional psychological support is likely to benefit people with cancer and their carers, whatever the severity of their psychological distress.
- Psychological symptoms are often not recognized, so services may not be offered.
- Health and social care professionals often lack appropriate assessment skills and may underestimate the benefits of psychological support.
How should I assess the person's social needs?
- Assess the person's social needs at key points during the course of the illness (for example at the time of diagnosis, around treatment episodes, as treatments end, at the time of a relapse, and when death is approaching).
- Be aware that assessment of need can be difficult because some people and their carers may be reluctant to ask for help.
- Social care and support needs include: emotional support, help with personal care (such as bathing and dressing), housework and shopping, practical aids (for example wheelchairs), caring for dependents (such as children or elderly relatives), and advice on work and employment issues.
- Offer the person and their carers informed professional assistance to obtain benefits for which they are eligible.
- Local authorities, NHS, or voluntary organizations may provide respite or day care, support groups, volunteer visitors, assisted transport, and bereavement care.
Basis for recommendation
These recommendations are based on guidance from the National Institute for Health and Care Excellence on improving supportive and palliative care for adults with cancer [NICE, 2004].
How should I assess the person's religious or spiritual needs?
- Assess the person's spiritual needs at key points during the course of the illness (for example at the time of diagnosis, around treatment episodes, as treatments end, at the time of a relapse, and when death is approaching).
- Spiritual need relates to a person's search for meaning within his or her life. Religion is a means of expressing underlying spirituality, but spiritual belief may not always be expressed in a religious way.
- Ensure that the person and their carers have access to staff who are sensitive to their spiritual needs.
- The level of support people need may range from an informal sharing of ideas about life, death, and the ultimate purpose of our existence, to the provision of formalized religious ritual.
- Key issues in delivering effective spiritual support to people who are receiving treatment or at the end of life include:
- Listening to the person's experience and discussing their questions.
- Affirming the person's humanity.
- Protecting the person's self-worth, dignity, and identity.
- Ensuring that spiritual care is offered as part of a holistic approach to health that also includes psychological, social, and emotional care.
- Multidisciplinary teams should have access to suitably qualified, authorized, and appointed spiritual care-givers and should also be aware of local community resources for spiritual care.
Basis for recommendation
These recommendations are based on guidance from the National Institute for Health and Care Excellence on improving supportive and palliative care for adults with cancer [NICE, 2004].
How should I address the needs of the family and carers?
- Offer family members and carers the opportunity for their needs (for example for support and information) to be assessed separately from those of the person receiving palliative care. They may have specific concerns such as:
- Fear of the person dying.
- Anxiety about an emergency occurring (for example what constitutes an emergency and how to deal with it).
- Feelings of inadequacy with regard to caring for the person at home (for example 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.
- Whenever possible and appropriate, invite family members and carers to be involved during clinical encounters and decisions about treatment and care (if this reflects the wishes of the person receiving palliative care).
- Ensure that family members and carers are made aware of local sources of information, advice, and support, to address their own needs.
- Particularly address the needs of the family and/or carers at demanding times in the person's illness, and when extra help may be needed.
- Consider that people of different ethnic backgrounds or cultures may have specific preferences regarding family involvement.
- Be aware that the demands of being a carer can sometimes present as physical symptoms (for example fatigue or weight loss).
- The family can be helped by:
- Facilitating communication between the person and their family and health care professionals.
- Recognizing areas of stress in other areas (for example work or coping with children).
- Education to provide the skills and knowledge to provide the necessary aspects of care to enhance the person's comfort.
- Discussion of pain management to reduce anxiety regarding potential addiction or tolerance.
- Encouraging expression of fears, concerns, uncertainty, and emotional strain.
- Providing information regarding the person's death and what to expect.
Basis for recommendation
These recommendations are based on guidance from the National Institute for Health and Care Excellence [NICE, 2004], the General Medical Council's guidance for doctorsTreatment and care towards the end of life: good practice in decision-making [GMC, 2010], and expert opinion in the Oxford textbook of palliative medicine [Hardy, 2015].
- 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 [NICE, 2004; Hardy, 2015].
- Healthcare providers may not always teach specific care-giving skills, which would be valuable to families [Hardy, 2015].