Carentis Palliative Care Guide
When Care Changes
As an illness progresses, the focus of care may change. This can be difficult for families to understand, particularly when treatment that was previously helping is no longer providing the same benefit.
Why might treatment change?
Earlier in an illness, treatment may aim to manage the underlying disease, control or slow its progression, or improve someone’s health.
As illness progresses, there may come a point when a treatment no longer provides enough benefit or its burdens outweigh its benefits.
The focus may then move towards:
- Comfort
- Managing symptoms
- Maintaining dignity
- Reducing distress
- Quality of life
- Time with the people who matter
The goal of care changes.
Does stopping treatment mean someone is being given up on?
No. Some treatments may stop because they no longer provide enough benefit, while others may continue because they remain helpful, particularly treatments aimed at comfort.
These decisions are individual. The healthcare team should explain why treatment is being reviewed and what the change means.
Some long-term medicines used to prevent or manage an underlying condition may no longer provide meaningful benefit or may become difficult or unpleasant to take. Medicines can therefore be reviewed as someone’s condition changes.
Stopping a medicine does not mean that care has been withdrawn.
What about food and drink?
Food and drink do not automatically stop because someone is receiving palliative or end-of-life care.
They should be offered for as long as the person is able and wants to take them.
As someone becomes more unwell, their appetite and ability to eat and drink may naturally reduce. They may become unable or unwilling to take food or fluids.
Comfort and the person’s wishes remain central.
The healthcare team can advise about swallowing, mouth care and what is appropriate as someone’s condition changes.
What happens next?
If you are unsure why treatment has changed, ask the nurse, doctor or other professional involved in the person’s care.
You can also read the next guide: What happens towards the end of life?
If your relative has an illness for which NHS Continuing Healthcare may be relevant, Carentis also provides guidance on NHS Continuing Healthcare and NHS Fast Track funding.