Care in the last days of life in hospital – Physical care at the end of life

Morgan K., Nadicksbernd J., Stirling L. C., Yardley S. (2015) Care in the last days of life in hospital. [Curriculum] UCLPartners, London.

These materials were funded by Health Education North Central and East London (HE NCEL).

Care in the last days of life in hospital

This educational package is focused on the care of patients in the last days of life in hospital. It provides resources suitable for the training of all clinical and non-clinical hospital staff, with the aim of improving discussions between professionals and patients, and those important to them, in order to facilitate the care of patients at the very end of life. The content addresses issues raised in the Neuberger Review, More care: Less Pathway, the Leadership Alliance Report on end of life care, One chance to get it right, covering the Five Priorities of Care (now inspected by the CQC) and Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision making and discussions (in the light of the Tracey judgement).

The package comprises of a 17 minute video and a range of resources. Trainers/facilitators can select materials according to the needs of participants and the time allocated.

The materials have been developed by the End of Life Care Education team at UCLPartners, with funding from HE NCEL, to help improve quality of care, patient and family experience, and outcomes measured e.g. the End of Life Care audit.

The film and materials were produced in collaboration with patients, carers, and hospital staff and have been endorsed by teachers and facilitators in initial piloting.

For further information, contact UCLPartners by e-mail at [email protected] or at:

UCLPartners 3rd Floor 170 Tottenham Court Road London W1T 7HA

www.uclpartners.com

Physical care at the end of life – Facilitator’s notes

Content A. Objectives

B. Room layout and activities

C. Session timings

D. Case study: Beryl

E. References and further reading

F. Activities handout for participants

A. Objectives At the end of this session participants should be able to:

 Describe how they would provide respectful care for a dying person during care, maintaining his/her dignity and understand the patient who is dying may still be able to hear, even if unable to visibly respond  Describe the key principles of gentle, sensitive care including repositioning, personal hygiene, skin care, continence care, monitoring and observation and good oral care

 Explain how they would support the family/people important to the patient to personally care for the patient if they wish to do so

 Explain how they would tailor regular monitoring of patient’s comfort in accordance to patient’s and those important to the patient’s wishes, including assessment, monitoring, management and documentation of symptoms, comfort, hygiene, observations and ongoing interventions

B. Room layout Ideally arrange for participants to sit in a ‘U’ shape to encourage group discussion and interaction. Advise the participants they will be working in pairs or small groups of 2-3 (depending on group size).

C. Session Timings 1. For use in a 2 hour teaching session

Time Content Slide(s) 10 minutes Welcome, introductions and objectives 1, 2, 3 15 minutes Communicating with and respecting the dying patient + Activity 1 4, 5 15 minutes Delivering sensitive, gentle personal care: personal hygiene + Activity 6, 7 2 10 minutes Delivering sensitive, gentle personal care: continence care + optional 8 Activity 3 5 minutes Delivering sensitive, gentle personal care: skin care and repositioning 9 5 minutes Delivering sensitive, gentle personal care: vital signs and observation 10 15 minutes Understanding the importance of good oral care + Activity 4 11, 12, 13 20 minutes Support the people important to the patient to personally care for the 14, 15, 16 patient + Activity 5 5 minutes Regularly monitor symptoms and comfort, providing individualised 17 care 15 minutes Activity 6 or alternative stand-alone activity: Beryl (see below) 18 5 minutes Questions 19

2. For use in a 1 hour 30 minute teaching session

Time Content Slide(s) 10 minutes Welcome, introductions and objectives 1, 2, 3 10 minutes Communicating with and respecting the dying patient + Activity 1 4, 5 10 minutes Delivering sensitive, gentle personal care: personal hygiene + Activity 6, 7 2 5 minutes Delivering sensitive, gentle personal care: continence care (do not 8 include Activity 3) 5 minutes Delivering sensitive, gentle personal care: skin care and repositioning 9 5 minutes Delivering sensitive, gentle personal care: vital signs and observation 10 10 minutes Understanding the importance of good oral care + Activity 4 11, 12, 13 15 minutes Support the people important to the patient to personally care for the 14, 15, 16 patient + Activity 5 5 minutes Regularly monitor symptoms and comfort, providing individualised 17 care 10 minutes Activity 6 or alternative stand-alone activity: Beryl (see below) 18 5 minutes Questions 19 3. For use in an hour teaching session

Time Content Slide(s) 5 minutes Welcome, introductions and objectives 1, 2, 3 10 minutes Communicating with and respecting the dying patient + Activity 1 4, 5 5 minutes Delivering sensitive, gentle personal care: personal hygiene (do not 6, 7 include Activity 2) 7 minutes Delivering sensitive, gentle personal care: continence care, skin care 8, 9 and repositioning (do not include Activity 3) 3 minutes Delivering sensitive, gentle personal care: vital signs and observation 10 10 minutes Understanding the importance of good oral care + Activity 4 11, 12, 13 5 minutes Support the people important to the patient to personally care for the 14, 15, 16 patient (do not include Activity 5) 10 minutes Regularly monitor symptoms and comfort, providing individualised 17, 18 care + Activity 6 5 minutes Questions 19

D. Case study: Beryl (In event of film being unavailable please use this case study for Activity 1, at Slide 2)

 Beryl, 78 years of age

 Retired postmistress

 Married to husband, Stanley and has a daughter called Joan

 Admitted with fluid overload on a background of end stage heart failure and community acquired pneumonia, Beryl’s third admission in seven weeks

 Beryl initially responded to diuretic treatment and intravenous antibiotics but the fluid soon became refractory to treatment

 Beryl is beginning to deteriorate: her infection markers are rising, she has a low grade temperature and the fluid has quickly re-accumulated, impacting on Beryl’s breathing and mobility

 The team have discussed with Beryl and her family that the treatment is no longer working and that they feel she may be in the last few days of life. They discussed DNACPR and what’s important to Beryl. Beryl said she wishes to be cared for in hospital

 She is now unresponsive and her husband, Stanley and daughter, Joan are with her

 You’ve not met Beryl before

In groups, discuss: 1. What physical symptoms are commonly experienced at the end of life? With Beryl’s medical history what symptoms might you anticipate and how would you explain these possible symptoms to Stanley and Joan?

2. Explain the measures you might take to help manage these symptoms

Answers 1. Pain, dyspnoea, agitation/restlessness, nausea/vomiting and respiratory secretions can be experienced at the end of life. With Beryl’s history she may experience include dyspnoea , respiratory secretions, coughing and pain 2. Dyspnoea:

a. Assess effort and efficacy of breathing (e.g., depth of breathing, rapidity of respiratory rate, use of accessory muscles of respiration, expectoration of secretions)

b. Management may include: opioid (e.g. PRN Morphine Sulphate 2.5-5mg SC 1 hrly; consider dose reduction if patient is elderly and/or underweight and seek specialist advice in event of renal or liver failure), repositioning, fan therapy, keeping the room cool, managing any associated distress and attending to any oral hygiene needs as a result of mouth breathing . Review the effectiveness of interventions

c. Where appropriate a CSCI may be used

d. Ensure Stanley and Joan are kept up to date

Respiratory Secretions:

a. At the end of life, airway secretions may accumulate and result in gurgling and rattling noises during inspiration and expiration. They can be made worse in the presence of a chest infection. It may be difficult to tell whether noisy secretions in the last few hours of life are causing distress to the person, but such noises may be distressing to some families or carers.*

b. Management may include: reposition on one side with the upper body elevated and a soft catheter suction can be carefully considered for use for large pools of secretions. PRN Hyoscine Hydrobromide or Glyccopyronium 400mcg 4-8 hourly SC can be used- it is important that drug treatment is started at the first sign of respiratory secretions, as drugs are much less effective at drying up existing secretions *

c. Where appropriate a CSCI may be used

d. Ensure Stanley and Joan are kept up to date

*NICE Clinical Knowledge Summaries Palliative Care 2012 (accessed 29th January 2015) http://cks.nice.org.uk/clinicalspeciality#?speciality=Palliative%20care

E. References and further reading  Jacobson, A.F. and Winslow, E.H. (2000) Caring for unconscious patients. American Journal of Nursing, 100 (1), 69.  Macmillan: End of Life: A Guide (2013; accessed 27th January 2015 http://be.macmillan.org.uk/Downloads/CancerInformation/EndOfLife/MAC14313EndoflifeE1lowrespdf2013 1023.pdf  Ten Principles of Dignity at the End of Life: NHS IQ http://www.nhsiq.nhs.uk/media/2455444/supportsheet6_ajr_updated_28_oct.pdf  ‘Hello My Name Is’ campaign http://hellomynameis.org.uk/  What Do You See? Dignity in Care Film by Amanda Waring https://www.youtube.com/watch? v=MTcopj6dYWQ  Rogers A, Karlsen S, Addington-Hall J (2000) All the services were excellent. It is when the human element comes in that things go wrong’: dissatisfaction with hospital care in the last year of life. Journal of Advanced Nursing 31(4) : 768–74  Doherty L (2011) Royal Marsden Hospital Manual of Clinical Nursing Procedures 8th edition Wiley-Blackwell  Akhtar S (2002) Nursing with dignity. Part 8: Islam Nursing Times 98(16):40-2.  Farrington, N, Fader, M. and Richardson, Alison (2014) Managing urinary incontinence at the end of life: an examination of the evidence that informs practice. International Journal of Palliative Nursing, 19, (9), Autumn Issue, 449-456.  RCN Continence Care at The End of Life, accessed Jan 27th 2015 https://www.rcn.org.uk/__data/assets/pdf_file/0006/280770/14.15_Gaye_Kyle.pdf  Ellershaw J, Wilkinson S, eds. (2010) Care for the Dying: A Pathway to Excellence Oxford University Press, Oxford  Henoch I, Gustafsson M (2003) Pressure ulcers in palliative care: development of a hospice pressure ulcer risk assessment scale. International Journal of Palliative Nursing 9(11) : 474–84  E-Learning for Health: General Approach to Assessment of Symptoms Accessed 22 January 2015 http://cs1.e-learningforhealthcare.org.uk/public/e- ELCA_Public_Access/END_04_003/d/ELFH_Session/301/session.html?lms-n  Jones, C. (1998) The importance of oral hygiene in nutritional support. British Journal of Nursing, 7 (2), 74–83  Regnard, C. and Dean, M. (2010) A guide to symptom relief in palliative care. 6th ed. Oxford: Radcliffe Publishing  National Institute for Health and Care Excellent 2012 Clinical Knowledge Summary Palliative Cancer Care- Oral  Davies A (2010) Oral care in advanced cancer patients in Davies A, Epstein J (2010) Oral Complications of Cancer and Its Management Oxford University Press  Martin S 2014 Oral Hygiene in Dying patients with diminished consciousness End of Life Care Journey 4 (2) http://endoflifejournal.stchristophers.org.uk/sites/default/files/articles/2.EoLJ_.Vol4_.No2_.ClinSkills.Oralca re.pdf NB: Contains useful algorithm: ‘Oral care guidelines for terminally ill patients with diminished consciousness’  Gillam J, Gillam D (2006) The assessment and implementation of mouth care in palliative care: a review. Journal of the Royal Society of Health 126(1) : 33–7  Twycross, R., Wilcock, A. and Stark Toller, C. (Eds.) (2009) Symptom management in advanced cancer. 4th edn. Nottingham  A list of discussion documents to improve policy and practice for carers of people at the end of life Dying Matters (accessed 29 January 2015) http://www.dyingmatters.org/page/carers-information-professionals- services-and-decision-makers  Information to signpost for carers: Marie Curie (undated, accessed 29th January 2015) ‘Preparing for the End of Life’ https://www.mariecurie.org.uk/help/being-there/end-of-life-preparation  Information to signpost for carers: End of Life Care Information (undated, accessed 29th January 2015) St Christopher’s and Marie Curie. Includes information on ‘What To Expect When Someone is Dying’ and ‘Looking After Yourself While Caring’ http://endoflifecareinformation.stchristophers.org.uk/  Scottish Palliative Care Guidelines (updated Jan 2015; accessed 29th January 2015) Care in the Last Days of Life http://www.palliativecareguidelines.scot.nhs.uk/guidelines/end-of-life-care/Care-in-the-Last-Days-of- Life.aspx  General Medical Council (2014; accessed 29th January 2015) Good Medical Practice http://www.gmc- uk.org/Good_medical_practice___English_0414.pdf_51527435.pdf

F. Activities handout

Activity 1 Discuss: What is the first thing you, as a health care professional, should do upon entering a room or bed space of an unresponsive patient who is dying? Activity 2 Pretend for a moment you are the patient in this bed.

Sometimes you are somewhat awake but your eyes are so heavy and it takes too much energy to speak or move. There are times when you don’t know what time of day it is or even quite where you are. Your lips and mouth feel extremely dry and you wish you had enough energy to take in some water and curl up on your favourite side. You know you are extremely unwell and maybe dying. You can hear people come and go. Many of the voices you don’t recognise. You can hear when others speak, often about you as if you were not even there. You feel hands on you at times, some gentle and reassuring, others rough, making you feel scared and worried. That’s when you feel the most vulnerable.

1. What would be important to you at this time?

2. If you could talk to the people who are caring for you, what would you tell them?

3. What would “good care” look like to you?

4. Does anyone want to share what that experience was like?

Activity 3 Discuss in small groups: What do you think is important when it comes to continence care at the end of life?

Activity 4 Discuss: 1. Why might a patient be at risk of poor oral hygiene at the end of life?

2. What would you include in an oral hygiene care plan for a patient at the end of life?

Activity 5 Discuss: If the people important to the patient wish to be involved in the patient’s physical care, what are the advantages of this…

1. for the patient?

2. for family and people important to the patient?

3. for health care professionals?

Activity 6 List non-verbal signs of discomfort and pain that a patient at the end of life may demonstrate or use activity: Beryl (see above).