First discussion in the acute stroke unit CONTINUED

Slide show

Scene 1

NURSE: “Yes, I remember speaking to them last night at 8pm when Mr Smith arrived on the ward. They told me how upset they were that he hadn’t made much improvement – and I imagine that they are even more upset as he’s clearly deteriorated further. They told me that he was the Chairman of several charities and that he loved golf. They also mentioned that the younger daughter was overseas (America, if I recall) and they weren’t sure whether she should come back to the UK …”

Note: Informal interactions with families are very useful in elucidating preferences, helping to support the family and ensuring that all important topics are covered in the discussion. It’s important to share this information with the rest of the team.

Scene 2

REGISTRAR: “Oh dear, I’ve got five other new patients to see. My consultant is not here … though I could contact them by phone.”

Note: Although these discussions can take time, they are a crucial part of patient care – and if done well, they can save time in the long-term as families will have more confidence in the teams. This results in less repeated meetings and fewer complaints. Also, remember that communicating well does not necessarily take more time; body language and correct choice of words and phrases can be extremely helpful and that this does not take additional time.

Scene 3

What would you say?

REGISTRAR:

“Of course I’m happy to talk to you. Let’s go somewhere quiet.”

Note: You may be able to leave your bleep with nursing staff, but this may not not be possible if you are covering lots of patients. Ask the nurse on duty to accompany you.

Video notes

0:35 Families often feel that conflicting messages have been given at the very early stage but this generally reflects:

• Uncertainty of prognosis
• Difficulty in communicating uncertainty early after stroke
• Families’ interpretation of the information provided.

It’s important to acknowledge their concerns without become ‘defensive’. There are a lot of questions from the family here-why isn’t he getting better, what’s going to happen to him, should his younger daughter come home? 1x Showing Text Slide element: Families often feel that conflicting messages have been given at the very early stage but this generally reflects: Uncertainty of prognosis Difficulty in communicating uncertainty early after stroke Families’ interpretation of the information provided.It’s important to acknowledge their concerns without become ‘defensive’. There are a lot of questions from the family here-why isn’t he getting better, what’s going to happen to him, should his younger daughter come home?

0:47 The doctor is acknowledging the concerns, empathising and hasn’t interrupted or become defensive.

0:57 It is useful to ask what the family do know, this is an important strategy so that you know how to tailor the subsequent discussion.

1:34 The medical notes state ‘wife told that there is a 1 in 10 chance of better recovery and 1 in 30 chance of bleeding into the brain and she accepts this and agrees to proceed’ Sometimes families don’t always remember the detail of the previous discussions, particularly around Thrombolysis and often overestimate the effectiveness when asked about this again.

2:15 It’s often useful to show families the brain scan, even If the scan looks normal, due to it being taken early after stroke. You need to explain that a normal scan is still compatible with a major stroke to avoid confusing the family. A scan that shows a large infarct or a large haemorrhage can be very useful.

2:44 It is difficult to decide how much more to broach in this conversation. Some of the issues here may be:

• It is difficult to know what to say next
• There are no decisions about feeding
• No decisions about cardio pulmonary resuscitation
• Unlikely that this man would be suitable for high dependency or intensive care bed
• Uncertain that he may die

3:03 Wait for the family to be receptive to further discussion Note the difficulty interpreting this – are the family saying that he’d hate to be disabled and so they should withdraw treatment, or that they want everything done to save his life?

3:24 At this point the doctor is wondering whether to broach issues around CPR and how actively to treat him if he were to deteriorate, but this seems too much for the family to take currently take on board when they thought that he would improve. The doctor feels that as he was a previously fit and active man, it is reasonable to treat him with antibiotics unless it’s clear that we would have hated to remain in a disabled state.

At this point, a change in tack to make some decisions together with family about management may be helpful.

What would you do? Should the doctor have asked about CPR at this point?

3:58 Note that this is a possible cue to discussing how aggressively they treat.

4:17 Note that the doctor is steering the decision making here, acknowledging that there is no clear steer from the family not to treat actively at this stage.

4:35 The doctor has read the notes and personal information. This can help the family.

4:57 Sometimes families will ask staff what they would do if they were in their situation. If you are asked, it’s important to answer this honestly. Some staff may also offer their own opinions without being asked (e.g. “If it were my dad I would definitely come home.”) whilst others would be reticent to do so. On balance, it’s probably sensible not to offer your own personal views unless asked, as the focus of the conversation must be on the patient and his family. 1x Showing Text Slide element: Sometimes families will ask staff what they would do if they were in their situation. If you are asked, it’s important to answer this honestly. Some staff may also offer their own opinions without being asked (e.g. “If it were my dad I would definitely come home.”) whilst others would be reticent to do so. On balance, it’s probably sensible not to offer your own personal views unless asked, as the focus of the conversation must be on the patient and his family.

4:59 The doctors think that the family aren’t really taking much in and yet decisions need to be made at least about antibiotics. The doctor thinks that it is reasonable to give him a course of antibiotics unless the family have strong views to the contrary.

5:51 The Doctor senses that they are not really sure what to say but to follow his advice. It’s important to take on board the family’s views but not make them feel responsible for decision making. Families are often in a state of shock, can’t be objective and also have little knowledge of the pros and cons of treatments; though some families are very clear about what they and the patient would want. It’s also important to avoid making families feel responsible for decision making as they can be left with feelings of guilt afterwards. However, it’s clearly important that family views inform and contribute to decision making.

6:11 At this point, the family looked shocked and exhausted. The doctor and nurse want to broach nasogastric feeding too and to get the family’s input. But there is a risk of overburdening the family with information though. In this particular instance, it is likely that there would be no harm to the patient in delaying feeding for another 24 hours, particularly if they feel he might have aspirated. They could either meet again in 24 hours or they could make the decision now to start feeding. If they decide on the latter approach, an appropriate way to broach this would be to say:

“He’s not received any food by mouth as his swallowing has been affected and if he is given any food or drink by mouth, it might go down into his lungs and make his infection worse. We’ve been giving him fluids so far through a drip into his arm. But on balance, I think we should try to feed him. We would need to do this with a tube into his nose, which is then passed into his stomach. This is a fairly routine procedure. There is a small risk that this might make his chest worse, but this has to be weighed up against the risk of him being undernourished.”

6:30 Note the term ‘something is better than anything’. “Reference: Something” rather than “anything” is significantly more likely to elicit a concern in a consultation.
[Heritage et al, 2007 “Reducing Patients’ Unmet Concerns in Primary Care: the Difference One Word Can Make” J Gen Intern Med. Oct; 22(10): 1429-1433]

7:08 If a conversation is difficult always offer the family to see someone more senior. Then make another appointment-rather than leaving the family to ask for a meeting. Families feel that they need to be regularly updated and having a meeting in their diaries does help with this. Note that there has been no discussion yet of high dependency or intensive care unit or cardiopulmonary resuscitation- the doctor felt that it was just too much to broach in the first discussion. The family had not given a particularly view on how the patient would have wanted CPR etc, and you don’t expect that he is going to arrest imminently and that HDU/ITU not currently required-the latter could be discussed when you meet family again.

7:24 In this case they sense the family are close and that the wife and older daughter will contact the son and younger daughter. From a practical perspective, it’s probably best to have a couple of key people with whom they communicate (particularly if these people have legal power of attorney), rather than speaking to each family member separately. Not only is this time consuming but it can lead to confusion between the family if they perceive that slightly different messages are given by different staff.

7:29 The Nurse decides that she will make sure that she spends some time with this family before she goes off-shift, just to check if they have any questions arising from this conversation. This is a really useful strategy as it allows the families to raise any further concerns, give them the opportunity to ask about something that they may have forgotten and to check their understanding of what has happened so far.

• The goal of this discussion is to try to support distressed relatives, explain the current clinical situation and be as supportive as possible.