Goals of discussion
- Explain that he is deteriorating. Base your comments on the known medical evidence. Perhaps use the CT scan or other test results to help explain this in lay terms
- Discuss unnecessary and ineffective treatments (this would include Cardiopulmonary Resuscitation and High Dependency Unit/Intensive Therapy Unit)
- Explain that he might survive but as time goes on it is more likely that his survival will be associated with significant disability
- Explain the need for ‘comfort care’ but with the option to continue with antibiotics and oxygen and fluids. It is useful to outline what ‘comfort care’ includes such as hygiene, turning or positioning for comfort, offering oral/mouth care etc.
- Allow time for family to reflect on what has been said and ask questions if they wish to. This may help you to learn what they have understood about what has been said. Remember they may still be in shock or coming to terms with what has happened to their loved one
The consultant Dr Richards is available to meet with the family to explain the present medical situation after reviewing his condition today. Mr Smith has taken a turn for the worse and despite high flow oxygen and antibiotics, his oxygen saturations have fallen and he has become more agitated. Nurse Barnett thinks he might be delirious but it’s hard to say for sure. He sounds even more ‘chesty’. He is neurologically unchanged. Chest X-ray shows extensive collapse/consolidation of the left lower lobe. His daughter has now arrived from America. Nurse Barnett had also seen Mr Smith this morning and thinks that it is unlikely that he’ll survive. They know from prior experience that ITU/HDU do not generally accept patients such as these who have extensive infarction on CT and major strokes, even if they were previously fit. They both feel that he should be managed at the ward level and that CPR would not be effective. The stroke nurse and the team wonder whether it’s the right time to stop treatment and move to a palliative approach including end of life care.
The following case study video contains interactive elements. If you are having issues with opening the interactive video, please follow one of the alternative video links below.
Summary: This is just one example of what might happen over the first few days. Sometimes patients will improve and then deteriorate weeks later and die, but Mr Smith has died early. This highlights the unpredictable nature of stroke and the difficulty in conveying uncertainty to families.
Remember that even though the content of what you need to say to families can be difficult, these conversations are easier if you can adopt a sympathetic, sensitive and honest approach and use non-verbal communication skills effectively to convey difficult information.
Video notes
1:52 Practice here varies. Arguably this should not even be mentioned as a treatment option as it would be ineffective, but the family are hinting that they want more done here and it is better to mention this and explain why it is not appropriate. Avoid the term “ceiling of care” when talking to families. When someone is as ill as this, antibiotics seem to make little difference to the outcome. The priority is for the patients comfort.
2:00 The doctor is finding this conversation difficult. Remember that it is important to do what is in the patient’s best interest and negotiate with the family. Clearly it is not appropriate for a patient to be in distress and this needs to be managed alongside active treatment if that is what the family really want. Sometimes the transition from active treatment to end of life care can be gradual and involve a series of steps. At this point the doctor does not feel the family will accept stopping of antibiotics.
2:57 Note that this is being mentioned in the broader context of further care planning. Do not use phrases such as “we need to sign the DNACPR form”. There is some variation in practice about whether CPR is discussed with families in this context. Some clinicians would not raise CPR as a possible treatment option because it would be ineffective. However in NHS Scotland, the DNACPR policy document 2015 recommends that if the patient lacks capacity, their representatives should be informed of that decision and the reasons for it as part of the ongoing care.
3:48 Do not ask if the person would want us to “try CPR”. Many people think that not trying is the same as “giving up”. The response is often “let’s try”. Some families equate DNACPR with “no treatment”. it is important to reassure the family that care will be given.
4:44 Do not use the phrase “withdrawal of treatment” as family may equate this with “withdrawal of care”.
4:53 This expresses sympathy but acknowledges limitations in management.
5:14 This emphasises that care will be given and that family can contribute.
5:24 The doctor senses that the family are still not ready to accept that their dad is not likely to survive but it can take a few more days to reach that agreement. The risk is that he will survive in a very dependent state with no quality of life but the doctor feels that the family are not ready to accept the discontinuation of antibiotics but that it is highly likely this man will die soon. Of course there is no way to determine the patient’s view as he can’t speak and the family had had no prior discussions. 1x Showing Text Slide element: The doctor senses that the family are still not ready to accept that their dad is not likely to survive but it can take a few more days to reach that agreement. The risk is that he will survive in a very dependent state with no quality of life but the doctor feels that the family are not ready to accept the discontinuation of antibiotics but that it is highly likely this man will die soon. Of course there is no way to determine the patient’s view as he can’t speak and the family had had no prior discussions.
5:31 Time limited trials can be useful, but in this case the doctor feels he won’t survive more than a couple of days.
6:03 Outcome: Active treatment with antibiotics and oxygen is continued. Anticipatory medication is written up on the drug chart and the conversation and decisions are documented in case notes. The patient dies the following day.
- The wife and daughter are crying. Staff remain calm and sympathetic, acknowledging that the family are having a hard time. However, they are seeking to reach an agreement with the family on a suitable management plan throughout the conversation.
- If families remain angry, ‘time out’ and/or further meetings might be needed to diffuse the tension.
Reflection point
Do you think it’s reasonable to make the decision about ‘not for escalation’ without a discussion with HDU/ITU? Some clinicians feel that it’s easier to convey that information to families if HDU/ITU have said ‘no’, rather than the stroke team assuming that they would say no if asked. What do you do in your practice?
Well done, you have reached the end of this section. What do you want to do next?
Page last reviewed: 16 Jan 2023
