Download Content

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.
B.
C.
D.
E.
F.
Objectives
Room layout and activities
Session timings
Case study: Beryl
References and further reading
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
10 minutes
15 minutes
15 minutes
10 minutes
5 minutes
5 minutes
15 minutes
20 minutes
Content
Welcome, introductions and objectives
Communicating with and respecting the dying patient + Activity 1
Delivering sensitive, gentle personal care: personal hygiene + Activity
2
Delivering sensitive, gentle personal care: continence care + optional
Activity 3
Delivering sensitive, gentle personal care: skin care and repositioning
Delivering sensitive, gentle personal care: vital signs and observation
Understanding the importance of good oral care + Activity 4
Support the people important to the patient to personally care for the
patient + Activity 5
Slide(s)
1, 2, 3
4, 5
6, 7
8
9
10
11, 12, 13
14, 15, 16
5 minutes
15 minutes
5 minutes
Regularly monitor symptoms and comfort, providing individualised
care
Activity 6 or alternative stand-alone activity: Beryl (see below)
Questions
17
18
19
2. For use in a 1 hour 30 minute teaching session
Time
10 minutes
10 minutes
10 minutes
5 minutes
5 minutes
5 minutes
10 minutes
15 minutes
5 minutes
10 minutes
5 minutes
Content
Welcome, introductions and objectives
Communicating with and respecting the dying patient + Activity 1
Delivering sensitive, gentle personal care: personal hygiene + Activity
2
Delivering sensitive, gentle personal care: continence care (do not
include Activity 3)
Delivering sensitive, gentle personal care: skin care and repositioning
Delivering sensitive, gentle personal care: vital signs and observation
Understanding the importance of good oral care + Activity 4
Support the people important to the patient to personally care for the
patient + Activity 5
Regularly monitor symptoms and comfort, providing individualised
care
Activity 6 or alternative stand-alone activity: Beryl (see below)
Questions
Slide(s)
1, 2, 3
4, 5
6, 7
8
9
10
11, 12, 13
14, 15, 16
17
18
19
3. For use in an hour teaching session
Time
5 minutes
10 minutes
5 minutes
7 minutes
3 minutes
10 minutes
5 minutes
10 minutes
5 minutes
Content
Welcome, introductions and objectives
Communicating with and respecting the dying patient + Activity 1
Delivering sensitive, gentle personal care: personal hygiene (do not
include Activity 2)
Delivering sensitive, gentle personal care: continence care, skin care
and repositioning (do not include Activity 3)
Delivering sensitive, gentle personal care: vital signs and observation
Understanding the importance of good oral care + Activity 4
Support the people important to the patient to personally care for the
patient (do not include Activity 5)
Regularly monitor symptoms and comfort, providing individualised
care + Activity 6
Questions
Slide(s)
1, 2, 3
4, 5
6, 7
8, 9
10
11, 12, 13
14, 15, 16
17, 18
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/eELCA_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 CareOral
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-professionalsservices-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-ofLife.aspx
General Medical Council (2014; accessed 29th January 2015) Good Medical Practice http://www.gmcuk.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.
2.
3.
4.
What would be important to you at this time?
If you could talk to the people who are caring for you, what would you tell them?
What would “good care” look like to you?
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).