The National Institute for Health and Care Excellence defines palliative care as [NICE, 2004]:

‘The active holistic care of patients with advanced, progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments.’

Patients with mesothelioma have significant palliative care needs, from diagnosis onwards. These include management of symptoms (physical, psychological, emotional, and social), information and communication needs.

The family carers of people with mesothelioma also have palliative care needs, including during bereavement. Their needs often differ to those of the patient, particularly around information needs and ‘what lies ahead’

Negative perceptions of the term ‘palliative care’ can make people reluctant to accept it. People may feel uncomfortable with the term because they feel it is too early to consider and may associate it with end of life. However palliative care is far wider than this, it is about living well.

Whilst it’s important not to avoid using the term ‘palliative care’, it needs to be sensitively approached with an awareness that people with mesothelioma and carers have different needs.

Introducing the concept as early as appropriate into patient and carer conversations, can be helpful, as is emphasising its role in improving quality of life and care.

• Conversations with patients and carers are very individual and can be enabled by careful listening
• It can be difficult to talk to people about the aspects of mesothelioma, such as, the requirement for a post-mortem
• An important element of conversations is to reassure patients and family/carers that healthcare professionals will stand alongside them and they will not be alone

General palliative care

Much of the support given to people is from professionals who are not specialists in palliative care.

Professionals providing general palliative care services (for example members of primary care teams) should aim to meet the needs of a person and their family within the limits of their knowledge and competence. Specialist advice should be sought or the person referred to specialist services when necessary.

The aim of general palliative care is to provide:

• Information on for the person and their carers, with ‘signposting’ to relevant services
• Accurate and holistic assessment of a person’s needs.
• Co-ordination on of care teams in and out of hours and across boundaries of care.
• Basic levels of symptom control.
• Psychological, social, spiritual, and practical support.
• Open and sensitive communication on with the person, their carers, and professional staff.

Specialist palliative care

Specialist palliative care services manage complex palliative care problems that cannot be dealt with by generalist services.

Ideally, professionals who are not specialists in palliative care, who care for people with advanced cancer, should have access to specialist advice at all times.

Specialist palliative care services are likely to include:

• Mulidisciplinary specialist palliative care teams to provide assessment, advice, and care for people with advanced cancer in all locations.
• Specialist in-patient facilities (for example hospice beds) for people with complex problems that cannot be managed adequately in other settings.
• Bereavement support services.
• Specialist palliative care services may be provided by statutory and voluntary organizations. Care may be provided in community, hospice, and hospital settings.

[NICE, 2004]

They are highly skilled and the majority have received training or education in palliative care. Their involvement is likely to contribute to a reduced need for early specialist palliative care.

They work closely with, and refer to, specialist palliative care to manage greater need.  Palliative care works best when there is good partnership working between mesothelioma UK CNSs and specialist palliative care teams to provide seamless care.

• Mesothelioma CNSs can facilitate care, their knowledge and relationship with patients/carers means that they are well placed to assess when it is appropriate to move from generalised to specialised palliative care.
• Family/Carers may play a key role in co-ordinating palliative care and can benefit from help and support to enable or reduce the need for this.
• Expectations about seamless palliative care cannot always be achieved, and healthcare professionals should be open about any difficulties

Characteristics of a good referral to specialist palliative care

1. Palliative care discussed early in the patients’ journey to ensure they are well prepared and agreeable to referral.
2. Specialist palliative care input provided in a timely and flexible manner.
3. Collaborative relationships and open communication between mesothelioma CNS and those working in specialist palliative care.
4. Integration of SPC into the mesothelioma pathway.

References

Gardiner, G; Harrison, M; & Taylor, B (2021). Understanding the role of Mesothelioma UK clinical nurse specialists in meeting the palliative care needs of patients and families: a mixed methods study. Mesothelioma UK Research Centre.

Summary report  |  Full report

This animation produced by the Mesothelioma UK Research Centre can be shared with patients to help dispel any palliative care misconceptions they may have.

This infographic produced by the Mesothelioma UK Research Centre is for clinical teams. It aims to raise awareness of mesothelioma and the importance of talking about palliative care early on in the patient journey. Click to download a copy of the infographic.