Category: Advancing Modules

Learning Outcomes

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

Aims of this Module

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.

Important points when considering end of life care in stroke

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 Authors

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

Introduction

Introduction - Speech bubble

Patients and families who experience good communication at this time of severe stress and uncertainty are more likely to feel well supported and informed. This enables them to share in person-centred decision-making.

When conversations with patients, families and with other health care professionals about end-of-life care after stroke are handled sensitively and effectively, this helps bereaved families to cope with loss, death and dying, they have better experience of the hospital team, better adjustment and fewer regrets.

Professionals who have the competence and confidence to communicate well, even in difficult and challenging circumstances, usually have less work related stress and greater engagement in their work.

Conclusion

Conclusion - Completed jigsaw

Having completed this module, you will now:

  • Have a knowledge of ethical and legal aspects of care at end-of-life following acute stroke, including Do Not Attempt Cardiopulmonary Resuscitation (DNACPR)
  • Have a knowledge of symptom management
  • Recognise the importance of support and communication
  • Have an awareness of the importance of spiritual and religious care
  • Understand the role of specialist palliative care services
  • Recognise the particular challenges of predicting outcome following stroke and the impact of this on families
  • Recognise the role of the multidisciplinary team and families in the decision making process (e.g. clinically assisted nutrition and hydration)
  • Have a knowledge of advance care planning

Key messages

  • End-of-life care should be driven by the patient’s wishes and therefore assessment of their capacity is essential
  • Ethical decisions around the provision of food and fluids in end-of-life care can be complex and the team need to respond to these on an individual basis
  • Effective communication between the team and the patient’s family is key to the delivery of good end-of-life care
  • In complex cases referral to specialist palliative care services should be considered
  • Regular review of the patient’s needs and care plans is essential
  • Many individuals may have made a decision around organ or tissue donation. These should be explored as part of advance care planning
  • Importance of regular conversations with the family and re-assessment as needed e.g. if new symptoms develop or if the family raise new concerns

For more information on decision making for assisted hydration and nutrition at end of life visit STARS AM 3: Freda  

End of life care

George’s condition was deteriorating. He was drowsy, unable to take oral medications, and having difficulty taking oral fluids. George’s wife expressed the view that George ‘would not want to be this way’. The multidisciplinary team discussed the situation and decided that George had reached a terminal phase of his stroke and end of life care was appropriate. A family meeting was arranged.

The family meeting was emotional but agreements were reached. George did not have capacity to participate in discussions regarding his future care. The team explained the basis for their view that George was at a stage of end-of-life care. It was decided that George was now not for resuscitation in the event of a cardio-pulmonary arrest and not to receive further antibiotic treatment. If his NG tube became dislodged, it would not be replaced and he would not receive subcutaneous fluids. Medications for secondary prevention and intermittent pneumatic compression (IPC) for venous thromboembolism (VTE) prophylaxis would also be withdrawal (NICE NG89) as the aims of George’s care now is to optimise his comfort and not to prolong survival. It was also decided that referral to palliative care services was not needed for George at this time since the ward staff felt they had sufficient expertise to meet his needs.

George’s family were reassured that he would be kept comfortable and that the staff would continue to update them on his condition. Following the meeting the team’s approach changed from active treatment to supportive management.

A follow up meeting was arranged to ensure that the family’s questions and concerns had been successfully addressed. George’s family were comfortable with the decision to move him from active to supportive care as the end of his life approached. His daughter expressed her satisfaction with the care he had received. The team communicated regularly with George’s wife and daughter, listening to their concerns, answering questions and proactively providing information and empathic emotional support. George’s wife and daughter were with him when he died.

Click this link to access STARs Advancing Module 18 where you will find information on sensitive and effective conversations at end of life care following acute stroke.