- Abigail Jones a 70-year old lady was found collapsed with a dense hemiparesis at home by home care worker and brought into A&E. Her husband had suddenly died a few months before and the family did not have time to see him before he had died
- The family are informed of lady’s admission by A&E and they rush to hospital, The traffic is heavy and they have to park 20 minutes walk away from hospital. They arrive in A&E and are told their mother has just been moved up to the stroke unit. A&E had been trying to contact them by telephone to inform them of the lady’s transfer
- They arrive on the stroke unit after having to ask several people for directions. They ask a doctor where the patient is (this doctor doesn’t work on the ward so directs them to the ward desk, but no-one is at the desk) and it takes a minute or two before a student nurse comes up to the desk and asks whether she can help them
- By now the family are frustrated, distraught, crying and abrupt with staff. The son is angry and the daughter is crying
The scenario is about expressing understanding and sympathy to family, diffusing the tension and supporting the family.
- If this sort of situation is familiar to you, think about practical ways that the hospital might help e.g. clear signage from A&E to acute stroke unit, designated quiet room for team/family conversations, staff members to take families from A&E to acute stroke unit, waiving car parking charges for families visiting patients on the stroke unit
The Jones family arrive on the ward. The first person they see is a student nurse. The student nurse has been asked by the trained staff to look out for the family arriving. They are obviously distressed. The daughter is crying and the son looks angry and is shouting ‘Where is our mum?’
The student nurse asks who they have come to see. (The student nurse does not know Mrs Jones well and feels that it’s not appropriate to speak to the family in any detail about the patient’s condition) In the meantime she smiles, is polite and avoids appearing to be defensive. She maintains eye contact then explains she will get a more senior nurse to speak to them. Given that the patient is very unwell, she takes the family to see their mum immediately. She explains that their mum is very unwell to prepare them a little for what they will see.
The family become more distressed when they see their mother lying on the bed unresponsive. Her son is even angrier and the daughter is still crying. A staff nurse and doctor take them into a quiet room and the doctor leaves her bleep at the nurse’s station to avoid interruptions. Offer a cup of tea if this seems appropriate.
The diagnosis of stroke can be an extremely stressful and difficult time for families. Helping to support families at this time with sensitive and effective conversations can be difficult for staff. In this section we explore in more depth how to help support families. We show film clips of how to have an effective conversation and consider examples of ‘poor’ comments which may be unhelpful. These unhelpful comments are often made when staff feel under pressure. We give examples of better comments.
Click on each of these comments:
A wide variety of work-related factors can contribute to feeling under pressure. Select the icons below to reveal some common issues that can affect stress levels and your way of communicating.
Tips for having effective conversations with upset families (see also the earlier sections for advice on good communication)
- The way that staff interact with families can help diffuse tension and can alleviate distress and anger
- Try to keep calm at all times (slow your speech and keep your tone of voice even); remember that your tone of voice and also your manner is just as important as what you say
- Listen without interrupting to family concerns
- Avoid becoming defensive in one’s attitude. The distress is not focused on you personally but is the result of the situation that the family is thrust into
- Use silences in conversations to diffuse tension, to allow families to reflect on what you’ve said and to say what is really on their minds
- Acknowledge the legitimacy of their distress e.g. ‘I understand that this is a terrible situation for you’
- If you don’t know the answer to something, it’s fine to say that but ensure that you find someone who can help
- Look for transition points, e.g. anger being replaced by other emotions
- Summarise the person’s issues and concerns. This confirms you have understood what they have said and taken this seriously
- Agree a plan going forward and ensure this is well documented in notes
- If the anger does not subside it may be appropriate to withdraw and take time out before talking again
Stroke-related factors that can trigger distress amongst family members:
- Suddenness of stroke. Family/patient have no time to prepare for the possibility of dying
- Feelings of guilt about personal contributions to the illness/situation e.g. ‘if I’d been there, perhaps I could have called the ambulance more quickly and the person would have received thrombolysis’
- Distress at seeing symptoms such as aphasia, incontinence, agitation or cognitive impairment
- Grief. A stroke survivor may be changed for ever if he/she survives
- Being involved in helping to make difficult but important decisions. Families are often unsure what a relative would want if this has not been discussed prior to the stroke
- Not receiving the same message from different members of staff. This partly reflects the uncertainty of prognosis and that clinical situations can change from day to day. But the perception of mixed messages may give the impression that staff don’t know what is happening
Context
Relatives can be extremely upset after the diagnosis of stroke.
- This may come across as anger or aggression towards staff
- Some relatives may become withdrawn, tearful, and avoid speaking to staff, or may even avoid visiting the hospital. If a family member has not been asking for information or avoiding the hospital-it is worth exploring why this is the case and being proactive in trying to make contact
Families and patients generally expect and have a right –
- to be treated with compassion, dignity and respect
- to be kept informed about what is happening
- for the staff to be friendly, knowledgeable, helpful and accessible
For staff, dealing with distress and ensuring that families are kept informed can be very difficult.
A day later Mr Smith has deteriorated despite antibiotics and oxygen. You know from prior experience that transfer to high dependency unit for ventilatory support would not be appropriate or effective.
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.
- The 70-year old man, David Smith who had an ischaemic stroke (left hemisphere Total Anterior Circulation Stroke) – whom we ‘met’ in the first scenario
- Previously fit
- Had been thrombolysed but no improvement
- Arrives on stroke unit having spent 3 days in admissions ward; family had had brief discussions with medical staff; family feel that different people had given different information
- Dense hemiparesis with aphasia and an ‘unsafe’ swallow
- He’s developed a temperature and sounds ‘chesty’
- Nasogastric feeding not yet commenced due to concerns about his chest
Goals for discussion:
- Establish trust with family and check whether there are other family members who aren’t present and who would want to be involved in discussions
- Explain the present situation clearly, avoid using too many medical terms. In this scenario the effects on the brain, speech, swallowing, breathing etc. Relate this to the symptoms which they can see and if necessary show them the CT brain scan
- Explain that it’s difficult in making predictions about whether acute treatments will help and how much recovery there will be. This might explain the apparent ‘mixed messages’ previously
- Establish what the patient would want if he could communicate, e.g. Has he ever expressed any prior views about living with severe disability that might guide management?
- Explain to family that we would like to involve them in decision-making but they should not feel responsible for the decisions that are ultimately made- making shared decisions is our goal to promote patient centred care
- Discuss views on early treatment decisions such as antibiotics, fluids and tube feeding; with patient preferences being the centre of such discussions
Background:
The Stroke registrar arrives at the stroke ward. The consultant is in a clinic. Mr Smith arrived on the stroke unit last night at 8pm having spent three days in the admissions ward. This is now day 4 of his admission. He had presented with a left middle cerebral artery territory stroke and had been Thrombolysed. Despite early treatment within 2½ hours of onset of symptoms, he still has a dense right hemiparesis, is aphasic and his visual fields could not be tested as he is unable to follow commands.
He was reviewed briefly by the on-call team last night who noted that he was stable medically. The Stroke registrar also reviews him this morning. He’s still ‘nil by mouth’ and is not receiving nasogastric feeding. He’s sounding ‘chesty’, his temperature is up, his oxygen saturations have fallen a little and he can hear some bibasal crackles. The Stroke registrar suspects that he may be developing pneumonia. He is drowsier and his eyes are no longer opening to speech. His family (wife and older daughter) are present, having arrived early in the morning as they sense that he is not so well. His son is not present but has been in regular contact with the rest of the family. The younger daughter is in America. His family are worried about his care and don’t understand why he hasn’t improved with thrombolysis. The admissions team had recommended thrombolysis on the basis that this was his best chance of making an early recovery. They have told the nurse who is on duty that they want to speak to a doctor.
