Caring for someone with a terminal illness

Advice for professionals

We asked carers what advice they had for professionals caring for people with a terminal illness. They wanted professionals to be honest, listen to the needs of the patient and carer, be compassionate and respectful at all stages of the process and treat the patient and carer as part of the team.

Diagnosis and prognosis

The diagnosis of a terminal illness is likely to be extremely difficult to accept and come to terms with for both the patient and the people close to them. Information about the prognosis (how the illness may develop) is also often a very difficult area to learn about. However, most carers preferred health professionals to be honest with them, and sometimes worried that they were being protected from the truth. Many carers were unfamiliar with the term ‘palliative care’ and did not initially understand the implications of this term. Carers specifically advised professionals to:

  • Create an environment where patients and carers feel there is time to ask questions.
  • Be honest with people about the diagnosis of terminal illness and what might typically happen in the dying process, particularly if someone asks.
  • Prepare people for the worst case scenario even when the diagnosis is uncertain.
  • Be honest about what palliative care means and then give the support that people need.
  • Be compassionate while remaining professional and give enough information when giving the diagnosis, don’t just read the results of tests.

Involving carer and patient

End of life care or palliative care is focused less on treatment for a condition and more on making patients comfortable and supporting them and their carers. It is appropriate that care is tailored towards individuals’ values and preferences rather than entirely biomedical knowledge. Carers often felt frustrated if they felt they or the patient were not listened to or their opinion wasn’t valued. Carers specifically advised professionals to:
  • Listen to and value patients’ and carers’ opinions and treat them as part of the team.
  • Respect that people may want to look up their own information to help them make informed decisions.
  • Anticipate future care needs so ‘last minute’ care crises can be avoided.
  • Provide guidance and advice where additional help may be available.
  • Be aware that not all people have an active carer and always check that they have the support they need from the community and other sources.
  • Be prepared to adapt to patients’ and carers’ preferred style of consultation. Allow them to choose their level of involvement in decision making and the amount of detail and information they wish to receive.
  • Provide support to the carer not just the patient because this can really help the carer to cope.

Training and skills

There are some fundamental areas where carers felt some health professionals could improve. These may be addressed by adopting a different approach and learning new skills. Carers specifically advised professionals to:
  • Acknowledge uncertainties and admit if you don’t know the answer; where possible find someone who does.
  • Make sure that all professionals are trained in the support needs of terminally ill people and their carers.
  • Set up learning networks to help raise GPs’ awareness of their patients’ specific conditions.
  • Ensure adequate communication skills so patients and carers can fully understand what healthcare professionals are telling them.

Coordinated care

Many carers experienced a lack of coordinated care and witnessed ineffective communication between different health professionals and agencies. This often caused unnecessary stress and work for carers. They advised professionals to:
  • Have clear communication about which agency is responsible for certain tasks; ensure that this is not left up the patient and carer to chase up and organise.
  • Provide good follow up when providing services, particularly with older people who might not know how to chase things up.
  • Have a designated person who makes sure that equipment and care packages are being put in place and for the carer and patient to contact if they need advice or support.

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Last reivewed December 2017.


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