Category: Introduction

Now take a moment to reflect on the following questions:

Think about your last few conversations at end of life care with patients and families. What did you find most difficult?

• Not sure what to say or how to put into words that their family member is dying or likely to die soon
• Outcome and timing of the dying process was uncertain so you couldn’t give an exact trajectory or a timescale when family ask
• Family were very upset, distressed, emotional, angry and this was difficult to deal with at the time
• You were unaware of what the family had previously been told by other members of the healthcare team – not certain if they had been told the patient was dying
• Family had unrealistic expectations of what treatment options were available for someone who is dying
• Explaining that some treatments will not work and may be distressing to the patient when they are dying – such as CPR
• How to be sensitive yet giving difficult information at a pace and level which family will be able to understand
• Discussing nutrition and hydration when the patient has a swallowing difficulty or is refusing food and drink

Practicalities of the meeting

• Think about seating layout e.g. avoid sitting behind a desk
• Take another member of staff to the meeting if possible
• Body language: use an ‘open’ posture
• It is helpful to take in the medical notes, any scans and possibly the drug chart (families often ask about treatments)
• Use the meeting not only to give information but also to allow the patient/family to share their views, values, concerns and priorities to make informed and shared decision-making. Ask ‘what matters to you most’ after you have told someone they are very ill or maybe dying or have told the family their loved one is very ill or maybe dying
• Find out about the patient/relatives ideas, concerns and expectations

How much information should you give and how should this be given?

• Think about the amount of information the family can process at this stressful or distressing time. They may be in shock
• Keep your explanations clear and as simple as possible
• Small amounts of information at a time are more useful than long speeches
• Give information by using structure like: Ask-Tell-Ask
• Use the Chunk and Pause method. Ask what they understand from what you have just told them as you go along. Allow them time during the meeting to pause and reflect on what you have said
• Always allow time for questions. The questions families ask can inform you about how much of the information you are giving has been taken in
• Be aware that when people are experiencing emotional distress, this can block their ability to hear, process and use the information you are giving

Finally

• Repeat important information to ensure the family have understood that their loved one is dying or unlikely to survive this stroke
• Try to offer a contact number or follow up meeting
• Document who attended and what was discussed and any plans which were agreed including any dates for further meetings

These and other strategies to help have effective and sensitive discussions will be explored in much more detail during the scenarios.

Early conversations are very important and can build a good relationship and increase the family’s confidence in the multidisciplinary team. If communication breaks down early, families may lose trust and confidence in the team. Before your meeting consider:

Information gathering

• Find out as much as you can before the meeting
• What key points should be discussed? Is the information needed available to you?
• Think about using computed tomography (CT) scans or simple diagrams to explain the extent of the stroke if this is appropriate
• Talk to other members of the team before the meeting, they may have information that has been gathered by more informal discussions with the family and patient
• Have test results to hand
• Check in the medical records whether the patient has any other conditions (such as dementia, cardiac problems or cancer) which could affect outcome after stroke
• Consider whether there are urgent decisions which need to be made

Who needs to take part in the discussion?

• If family or friends have power of attorney they are significant in decision making. There may be family members who can only be contacted by telephone. In large families, check if it is acceptable to ask for a family representative to relay information to others. It is helpful to be aware of any conflicts between families members that might make communication and decision making more difficult
• Does the patient have capacity? It should be remembered that capacity is decision specific and healthcare professionals should make every effort to include the patient in decision making if at all possible
• How aware of their deteriorating health and prognosis is this person or their family? Are there clues in the medical notes or would a phone call to their GP help to clarify this before the meeting?

The right environment and timing

• Try to get a private space away from distractions
• What is a good place and time? How long does the meeting need to be? (remember to leave time for questions)
• Leave your bleeper or pager with someone else while you are having this conversation
• Would a series of conversations be better? This is very helpful when the outcome is uncertain. Check when you are available for the next meeting, families are often reassured to know that they will have further opportunities to ask questions

Look at the conversation examples below. Consider whether you think these conversations are more difficult or less difficult for people with stroke than other patients. How the specific problems after stroke might influence decision making and conversations with patient and family will be explored later in the module.

• Sudden onset (often little warning of a severe stroke so patient and family are often in shock with no time to prepare)
• Uncertain prognosis in first hours/days (very common, some patients who may seem to be very ill and at end of life can start to improve, for some the illness trajectory can be very variable)
• Dysphagia (patients who cannot swallow in the early stages can complicate the management and outcome which is difficult for families to understand)
• Speech impairment (when the patient loses speech or communication their family can be uncertain what the person actually wants or needs at end of life)
• Shock and effect on carer (the immediate focus is on the patient but carers can be affected very quickly especially if there are dependent children or others at home. Their role and responsibilities can change significantly after stroke)
• Need for quick decisions when the patient has had a life-threatening stroke (for example, hemicraniotomy or clot retrival)
• Insufficient time to get to know the patient and family (staff have to cope with distressed patient and family who they do not have time to build a relationship with)
• Slow deterioration (more common in chronic conditions than stroke)
• Time to plan for patient’s wishes (when a patient has a chronic condition they may have already discussed their wishes about what they would like to happen at the end-of-life stage in their illness, put in place equipment and services to allow the person to die at home if they wish to)
• Time to appoint power of attorney (people with chronic conditions may have put arrangements in place for power of attorney, will etc)
• Families may have spoken about preferences around death and dying e.g. preferred place of death (some families may have discussed or planned around end of life if the person has a chronic condition)
• Families may have already discussed preferences for life-saving interventions or Cardio Pulmonary Resucitation (GP may have started an Anticipatory Care Plan or made entries on to a KIS summary if the person has a chronic condition)
• Difficulty involving patients (who are too ill) and families (if they are distressed) in discussion of patient preferences/ goals at a time when prognosis is unclear, and preferences may not be known.

As you start this module, take some time to reflect on your own experiences, thoughts and feelings about communication in end-of-life care in your work looking after patients with stroke.

• What are the most difficult aspects of having conversations with patients affected by a stroke and their families?
• How do you ensure good communication within the multi-professional stroke team?

Please complete this self assessment questionnaire. You will be able to compare your answers at the beginning and the end of the module. All your responses are confidential and are for your own learning and reflection. Please answer all questions.

Thinking about loss, death and dying may bring up personal feelings and worries. If this happens, please do ask for support from your manager or an experienced colleague.

On completion of this module, you should feel more confident in:

• Having sensitive and effective conversations with patients and their families after a severe stroke
• Talking about dying after a stroke and sharing information about poor prognosis, including the uncertainties of duration and outcome
• Exploring the understanding, expectations, goals and priorities of patients, if they are able, and involving those close to them (including any welfare attorney)
• Discussing options for treatment and care informed by patient goals/preferences
• Communicating effectively with family members who are experiencing a range of complex emotions
• Supporting families when the patient is dying and in the early phase of bereavement
• Effective communication within the multidisciplinary team and with other colleagues and services, including the primary care team if a patient is discharged home to die
• Supporting yourself and your colleagues within the team providing end-of-life care following acute stroke

In this module, we aim to help healthcare professionals have sensitive and effective conversations about end-of-life care after stroke. Our goal is to improve the care that stroke patients receive at the end of their life and the experiences of their families.

This module does not provide information or education about options for treatment and care after a severe stroke. Its focus is on preparing professionals to have good conversations about poor prognosis, treatment decision-making, and end-of-life care.

This module follows on from the STARS module 16 End of life care after stroke. We recommend that you complete that module before starting this one.

The learning outcomes of this module are informed by various studies performed in the last 7 years. In particular, a survey of 599 healthcare professionals in May 2015, longitudinal study involving stroke survivors and carers in 2017 and a qualitative study involving stroke survivors and their families in 2018.

The main topics from these studies were how to communicate with patients and families about the following:

• Uncertainty of stroke prognosis and trajectory
• Communicating with anxious and distressed families and patients
• Communicating uncertainty while managing expectations
• Communicating within the MDT and recording conversations and information
• Discussing feeding, hydration and treatments which may prolong survival but with disability
• Involving patients and families in shared decision-making about treatments in-keeping with their preferences

Acknowledging and providing ongoing support post-discharge, especially emotionally and in the context of bereavement for families.

When considering a discussion regarding end of life care in the context of a stroke, it is important to ensure that the diagnosis is correct and patient preferences have been considered with respect to any potential appropriate treatments. In particular, whether an alternative reversible diagnosis such as non-convulsive status epilepticus or other metabolic disturbances (e.g. hypoglycaemia) could be attributing to the patient’s status. Once alternative causes have been ruled out, and the diagnosis is felt to be clinically a severe stroke, then discussion on patient and/or family preferences on possible treatment approaches should be explored

Key points to remember:

• It is crucial that the correct diagnosis is made before initiating end-of-life care
• Consider rare mimics such as non-convulsive status epilepticus
• If the brain imaging is normal it is particularly important to consider stroke mimics, though clearly normal stroke imaging is still compatible with a severe ischaemic stroke
• Consider all possible treatment options before making a decision to initiate end-of-life care

Module Lead
Professor Gillian Mead, University of Edinburgh and NHS Lothian

Group Members
Dr Akila Visvanathan, Consultant in Stroke and Medicine for the Elderly, NHS Lothian and the University of Edinburgh
Lisa Dow, Lead Speech and Language Therapist, Acute Stroke Services, Aberdeen Royal Infirmary, NHS Grampian
Susan McPherson, Specialist Dietitian, Specialist Older Adults and Rehabilitation Services, NHS Grampian
Katrina McCormick, Clinical eLearning Project Manager, RGN, Chest Heart & Stroke Scotland
Serena Battistoni, eLearning Interactive Content Developer, Chest Heart & Stroke Scotland

This module was originally developed by:

Module Lead
Professor Gillian Mead, University of Edinburgh and NHS Lothian

Group Members
Dr Fergus Doubal, University of Edinburgh and NHS Lothian
Eileen Cowey, Researcher Nursing and Healthcare, University of Glasgow
Professor Scott A Murray, St Columba’s Hospice Chair of Primary Palliative Care, Primary Palliative Care Research Group, University of Edinburgh
Dr Maggie Grundy, Associate Director Nursing & Midwifery, NHS Education for Scotland
Sheena Borthwick, Service Lead, Adult Community and Rehabilitation Speech and Language Therapy Services, NHS Lothian
Dr Kirsty Boyd, Consultant in Palliative Medicine, NHS Lothian
Christine Lerpiniere, Senior Research Nurse NHS Lothian

Critical Reviewers
Mairi Chrystal, Head of Stroke Nurse & Therapist Services, Chest Heart & Stroke Scotland
Hazel Fraser, Stroke Co-ordinator NHS Fife
Dr Ann Marie Rice, Deputy Head of Nursing & Health Care, University of Glasgow
Dr Chris Burton, Senior Research Fellow, University of Bangor
Dr Sarah Keir, Consultant, NHS Lothian
Lynn Reid, Head of Education Programmes, Chest Heart & Stroke Scotland
Margaret Somerville, Director of Advice and Support, Chest Heart & Stroke Scotland

Project Manager
Fran Bailey, eLearning project manager, Chest Heart & Stroke Scotland