Not uncommonly, patients with worsening life-limiting conditions attend the ED with no recorded discussion of their wishes about treatment options in the event of an abrupt deterioration; only 4% of patients have any documented evidence of advance care planning prior to hospital admission17.
Honest communication is therefore an essential component of palliative care but is frequently avoided by healthcare staff due to a lack of confidence, a wish to avoid causing distress, or due to uncertainty over treatment response, such as in a frail patient with sepsis who may respond to treatment but has a significant chance of dying.
The goals of communication are to10,17:
A conversation might go like this:
You’re very sick at the moment, sick enough that you might die. | Conveys seriousness of situation |
Do you want all the details, or just the bare minimum about what might happen to you? | Finds out how whether individual is open to this conversation |
We’re treating you with antibiotics, fluids and nebulisers and we hope you’ll improve with them. | Sustains a small degree of hope, grounded firmly in reality of situation |
But your body is very weak and I’m worried that you won’t respond to the treatment. | Honestly conveys expectations |
The next few hours to a day or so are critical, but we can’t be certain how things will go. | Gives loose possible timeframe range |
If you don’t improve and get sicker, I need to know what’s most important to you…. | Opens door to explore patient’s wishes or priorities |
Various communication models to support conveying bad news in a structured way have been developed18.
If death does not appear imminent, but is likely during this admission, explore understanding about the patient’s illness trajectory with them or their loved ones:
This helps you get an idea of the patient’s awareness of their overall trajectory and can help the inpatient teams lead further discussion about goals of care later in the admission if appropriate.
When a patient has a learning disability, it is especially important to be aware of their cultural background, likes and dislikes, how they communicate and how they express pain. A family member or caregiver who knows them well is often essential to ensure adequate communication19.
Avoid using language that suggests palliative care involves doing nothing. Phrases like ‘withdrawing care’, ‘stopping treatment’ and ‘ceilings of care’ can give the impression that all care is stopping, instead of futile or inappropriate treatments being stopped and a focus shifting to comfort and helping patients use their remaining time most wisely17.
Learning Bite
The phrase a patient ‘is sick enough to die’ helps crystalise the seriousness of the situation for the patient and their loved ones.