Category: Advancing Modules

George

photo portrait of George

photo portrait of George

George is a 76-year old gentleman who has been in your stroke unit for 3 weeks now. He had a severe posterior circulation stroke and has had a low conscious level since. He opens his eyes and allows all care to be carried out but his family have asked if he is “locked in” as he gives no verbal response. His family were initially told he might die but wanted everything possible to be done.

George has had a NG feeding tube in place since day 2 because his swallow was assessed as unsafe. At present he is tolerating feeding. He has just completed a course of antibiotics but still has a moist cough.

George is married and both he and his wife were looking forward to travelling more since their recent retirement. They have a daughter who is very involved and visits George in hospital daily with her mother. George’s wife is now expressing her doubts that George  would want to be in this situation.

Esther

photo portrait of Esther

photo portrait of Esther

Esther was a widow who lived alone and required very little help or assistance from her two sons who lived nearby. She was very proud of her independence and of the active role she played in the local Jewish community.

One morning when her son called to visit he found her collapsed on the floor. Following admission to hospital Esther’s CT brain scan showed she had suffered a large left intracerebral haemorrhage with mass effect (local pressure from the bleeding was affecting adjacent parts of her brain). She was initially very restless but later settled. She died 2 days after admission without regaining full consciousness.

A few weeks after her death, the Charge Nurse in the Stroke Unit received a letter from Esther’s family.

What is palliative care and end of life care?

The term palliative care is used to cover the care provided from diagnosis to the end of life and bereavement.

World Health Organization (WHO) defines palliative care as:

“Palliative care is an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial or spiritual.

Addressing suffering involves taking care of issues beyond physical symptoms. Palliative care uses a team approach to support patients and their caregivers. This includes addressing practical needs and providing bereavement counselling. It offers a support system to help patients live as actively as possible until death.

Palliative care is explicitly recognized under the human right to health. It should be provided through person-centred and integrated health services that pay special attention to the specific needs and preferences of individuals.” WHO (2020)

End-of-life care is a recognised component of palliative care and is usually the most appropriate approach to use in acute stroke. This is because the sudden onset of stroke and its high mortality rate in the acute phase mean that the opportunity to provide palliative care may be limited. In this module when talking about end of life care we mean the last few days of life

In order to illustrate different aspects of end-of-life care this module will use 2 case scenarios:

photo portrait of EstherEsther

Esther, who dies within a few days of having a stroke

photo portrait of GeorgeGeorge

George, who survives the first few days but whose condition deteriorates over the next few weeks

Introduction and learning points

Stroke carries a significant risk of death and is one of the three biggest causes of death in Scotland. It is estimated that approximately 15% of patients admitted to hospital with a stroke die within 30 days. Thus, end-of-life care is an important clinical issue for the stroke team.

A wealth of information already exists on providing compassionate, person centred and sensitive end-of-life care. This module focuses on end-of-life care following acute stroke (within 30 days). On completion of this module you should have a critical understanding of the complexities of end-of-life care relevant to stroke, and its impact on families. The common issues affecting patients and their families are illustrated in this module; we have also supplied references for other reading to expand your knowledge further. Certain aspects of stroke care are covered in more details in other advancing modules (such as Hydration and nutrition, Emotional impact of stroke, Communication, Physiological monitoring, Pain management, Sensitive & effective conversations at end-of-life care after acute stroke).

On completion of this module, you will:

  • 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 the legal aspects of the Adults with Incapacity Act (Scotland)
  • Have a knowledge of symptom management
  • Recognise the importance of support and communication and given recent changes in the law this should include discussions on tissue donation
  • 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 anticipatory care planning

It is useful to consider what we mean by palliative care and end-of-life care.

Click the links below for other modules relevant to End of Life care:

STARS AM 18: Sensitive and effective conversations at end-of-life care after acute stroke

STARS AM14: Pain management following stroke

 

 

Introduction- module authors

Introduction - Speech bubble

Module authors

Module lead

Dr Christine McAlpine, Consultant Stroke Physician, Glasgow Royal Infirmary, NHS Greater Glasgow and Clyde

Group members

Akila Visvanathan, Medicine of the Elderly and Stroke Registrar, NHS Lothian

Chris Lerpiniere, Stroke Research Nurse, University of Edinburgh

Dr Eileen Cowey,  Senior Lecturer, Nursing & Health Care School, University of Glasgow

Dr Matt Lambert, Consultant in Medicine for the Elderly and Stroke, Clinical Lead for Stroke, Ninewells Hospital, NHS Tayside

Sheena Borthwick, Specialist Speech and Language Therapy Clinical Lead for Stroke, NHS Lothian

Serena Battistoni, eLearning Interactive Content Developer, Chest Heart & Stroke Scotland

 

Reviewer

Dr. Fiona MacCormick, Palliative Care Consultant, NHS Tayside

Dr Libby Ferguson Medical Director Marie Curie Glasgow/ Consultant Palliative Medicine, Glasgow Royal Infirmary, NHS Greater Glasgow & Clyde

Prof Martin Dennis, Professor of Stroke Medicine, The University of Edinburgh

Karen Smith,  Stroke Specialist Nurse, NHS Dumfries & Galloway

Sandra Hewitt, Speech & Language Therapist, NHS Highland

 

This module was originally developed by:

Module lead: Hazel Fraser, Stroke Coordinator, NHS Fife

Group members: Sheena Borthwick, Clinical Specialist Speech and Language Therapist, NHS Lothian
Fiona Ewart, Stroke Practice Development Facilitator, CHSS / NHS Lanarkshire
Robert Morton, Senior Pharmacist, NHS Tayside
Morag Ogilvie, Senior Dietitian, NHS Forth Valley
Gillian Sherwood, Lead Nurse Palliative Care, NHS Greater Glasgow and Clyde

Critical readers: Dr Jackie Chaplin, Previously Project Manager: Palliative Care for People with Non-Malignant Conditions NHS Greater Glasgow and Clyde
Eileen Cowie, Research Assistant, University of Glasgow
Prof Martin Dennis, Professor of Stroke Medicine, University of Edinburgh
Joanne Graham, Stroke Training Coordinator, CHSS / NHS Fife
Elaine Holden, Lead Speech and Language Therapist, NHS Lanarkshire
Dr Christine McAlpine, Clinical Director, NHS Greater Glasgow and Clyde

16: End of life care

Introduction

On completion of this module you should have a critical understanding of end of life care and the particular challenges that stroke presents in providing this care.

The answers to all the test questions are contained within the module. This information may be provided in the ‘Additional Information’ boxes on some of the pages.

Further reading

  1. De Iongh A, Fagan P, Fenner J, Kidd L (2015) A Practical Guide to Self-Management Support London, The Health Foundation https://www.health.org.uk/sites/health/files/APracticalGuideToSelfManagementSupport.pdf
  2. Jones F, Riazi A (2011) Self‐efficacy and self‐management after stroke: a systematic review. Disability and Rehabilitation 33:10:797‐810 doi: 10.3109/09638288.2010.511415.
  3. Lennon S, McKenna S, Jones F (2013) Self-management programmes for people post stroke: a systematic review. Clinical Rehabilitation 27:867–78 doi: 10.1177/0269215513481045.
  4. Warner G, Packer T, Villeneuve M, Audulv A, Versnel J (2015) A systematic review of the effectiveness of stroke self-management programs for improving function and participation outcomes: self-management programs for stroke survivors. Disability and Rehabilitation 37:23:2141–63. doi: 10.3109/09638288.2014.996674.
  5. Fryer CE, Luker JA, McDonnell MN, Hillier SL (2016) Self-management programmes for quality of life in people with stroke. The Cochrane Library 8:1–77 doi: 10.1002/14651858.CD010442.pub2.
  6. Wray F, Clarke D, Foster A (2018)Post-stroke self-management interventions: a systematic review of effectiveness and investigation of the inclusion of stroke survivors with aphasia. Disability and Rehabilitation 40:11, 1237-1251 doi: 10.1080/09638288.2017.1294206
  7. Parke HL, Epiphaniou E, Pearce G, Taylor SJC, Sheikh A, Griffiths CJ (2015) Self-Management Support Interventions for Stroke Survivors: A Systematic Meta-Review. PLoS ONE 10:7: e0131448 doi: org/10.1371/journal.pone.0131448
  8. Satink T, Josephsson S, Zajec J, Cup EC, de Swart BJM, Nijuis-van der Sanden MWG (2016) Self-management develops through doing of everyday activities – a longitudinal qualitative study of stroke survivors during two years post-stroke BMC Neurology 16:221 doi: 10.1186/s12883-016-0739-4
  9. Clark E, Bennett K, Ward N, Jones F (2018)One size does not fit all – Stroke survivor’s views on group self-management interventions. Disability and Rehabilitation 40:5, 569-576 doi: 1080/09638288.2016.1268653.
  10. Boger E, Demain S, Latter SM (2015) Stroke self-management: a focus group study to identify the factors influencing self-management following stroke International Journal of Nursing Studies 52:1:175-187 doi: 10.1016/j.ijnurstu.2014.05.006.
  11. Sadler E, Wolfe CDA, Jones F, McKevitt C (2017) Exploring stroke survivors’ and physiotherapists’ views of self-management after stroke: a qualitative study in the UK. BMJ Open 7:e011631. doi:10.1136/bmjopen-2016- 011631.
  12. Kidd L, Lawrence M, Booth J, Rowat A, Russell S (2015) Development and evaluation of a nurse-led, tailored stroke self-management intervention BMC Health Services Research 15:359 DOI 10.1186/s12913-015-1021-y.
  13. Kidd L, Booth J, Lawrence M, Rowat A (2020) Implementing supported self-management in community-based stroke care: a secondary analysis of nurses’ perspectives Journal of Clinical Medicine 9:4:985 https://www.mdpi.com/2077-0383/9/4/985
  14. Bright & B. Reeves (2020): Creating therapeutic relationships through communication: a qualitative metasynthesis from the perspectives of people with communication impairment after stroke, Disability and Rehabilitation, DOI: 10.1080/09638288.2020.1849419
  15. Kidd L, Lawrence M, Booth J and Rowat A (2015) Stroke self-management: what does ‘good’ self-management support from nurses look like? Primary Health Care 25:3:24-27
  16. Taylor, A., Monsanto, X., Kilgour, H., Smith, C., & Hale, L. (2019). Attitudes of healthcare professionals towards self- management for patients with stroke. New Zealand Journal of Physiotherapy, 47(1), 25-35. https://doi.org/10.15619/ NZJP/47.1.04
  17. Leana Nichol, Annie J. Hill, Sarah J. Wallace, Rachelle Pitt, Caroline Baker & Amy D. Rodriguez (2019) Self-management of aphasia: a scoping review, Aphasiology, 33:8, 903-942, DOI: 10.1080/02687038.2019.157506

 

Conclusion

Conclusion - Completed jigsaw

Having completed this module, you should now:

  • Understand what self management is and have knowledge of self management strategies
  • Have an awareness of the skills required to deliver self management
  • Know how you may support service users to develop and maintain self management skills
  • Know how self management approaches differ in hospital and community settings
  • Understand that self management is a patient-centred process that is tailored to the needs of the individual
  • Understand the role of goal setting and self practice

Key messages

  • Self management in the community can be delivered in various ways
  • One of the healthcare professionals primary aims is to try to help and support them manage their condition; not to take charge
  • Different self management approaches work for different patients
  • Patient centred goal setting is different in the community and just as effective