Care in the last days of life in hospital - Effective communication
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 - Overview
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
Effective communication – Facilitator’s notes
Content
A.
B.
C.
D.
E.
F.
G.
Objectives
Room layout
Session timings
Alternative activity: Beryl
References and further reading, including resources on formally documenting wishes and preference
The Tracey case
Activities handout for participants
A. Objectives
By the end of this session, participants should be able to:




Explore a patient’s understanding of his/her current disease state and what the patient wishes to know
Explain and discuss in simple terms patient’s deterioration, prognosis and trajectory of deterioration
including symptoms that may develop and their management
Ascertain patient’s and the persons important to the patient’s wishes and preferences for care including
preferred place of care and ceiling of treatment
Appropriately conduct discussion about DNACPR according to best practice and with an understanding of the
implications of the Tracey case
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 hours 30 minutes teaching session
Time
15 minutes
15 minutes
5 minutes
15 minutes
15 minutes
5 minutes
10 minutes
10 minutes
5 minutes
Content
Welcome, introductions and objectives and watch Effective
conversation and communication section of film
Activity 1
Structuring the conversation
Exploring a patient’s understanding of his/her current
disease state + Activity 2
Explain in simple terms patient’s deterioration + Activity 3
Discuss prognosis and trajectory of deterioration
Explore the patient’s wishes and preferences + Activity 4
Identifying, exploring and supporting spiritual and religious
needs + Activity 5
Providing psychological support
Slide(s)
2,3
4
5, 6
7, 8, 9
10, 11
12
13
14
15
10 minutes
30 minutes
20 minutes
20 minutes
Ascertain wishes around ceiling of treatment + Activity 6
Appropriately conduct discussion about DNACPR according
to best practice + Activity 7
Appropriately conduct discussion about DNACPR: The
Tracey case and plan of care
Reflection and questions including Activity 8
16
17, 18
19, 20, 21, 22, 23,
24, 25
26
2. For use in a 2 hour teaching session
Time
15 minutes
15 minutes
5 minutes
10 minutes
5 minutes
5 minutes
5 minutes
10 minutes
5 minutes
15 minutes
15 minutes
15 minutes
Content
Welcome, introductions and objectives and watch Effective
conversation and communication section of film
Activity 1
Structuring the conversation
Exploring a patient’s understanding of his/her current
disease state (do not include Activity 2)
Explain in simple terms patient’s deterioration (do not
include Activity 3)
Discuss prognosis and trajectory of deterioration
Explore the patient’s wishes and preferences (do not
include Activity 4)
Identifying, exploring and supporting spiritual and religious
needs + Activity 5 and providing psychological support
Ascertain wishes around ceiling of treatment + Activity 6
Appropriately conduct discussion about DNACPR according
to best practice (do not include Activity 7)
Appropriately conduct discussion about DNACPR: the
Tracey case and plan for care
Reflection and questions + Activity 8
Slide(s)
2,3
4
5, 6
7, 8, 9
10, 11
12
13
14, 15
16
17, 18
19, 20, 21, 22, 23,
24, 25
26
3. For use in an hour teaching session
Time
10 minutes
12 minutes
5 minutes
5 minutes
Content
Welcome and objectives and watch Effective conversation
and communication section of film
Activity 1
Structuring the conversation
Exploring a patient’s understanding of his/her current
disease state (do not include Activity 2)
Slide(s)
2,3
4
5, 6
7, 8, 9
5 minutes
5 minutes
5 minutes
10 minutes
3 minutes
Explain in simple terms patient’s deterioration (do not
include Activity 3) and discuss prognosis and trajectory of
deterioration
Explore the patient’s wishes and preferences (do not
include Activity 4)
Identifying, exploring and supporting spiritual and religious
needs (do not include Activity 5) and providing
psychological support
Ascertain wishes around ceiling of treatment and
appropriately conduct discussion about DNACPR according
to best practice and plan for care (do not include Activity 6
or 7 and instead provide slides 17-22 with the Tracey case
as a handout, included below)
Questions (do not include Activity 8)
10, 11, 12
13
14, 15
16, 17, 18, 25
26
D. Alternative Activity 1: 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
You feel very concerned that the diuretic treatment and intravenous antibiotics are no longer working
effectively and Beryl’s prognosis is very uncertain, possibly as short as weeks. You are not sure that
admission to ITU is clinically indicated in event of Beryl further deteriorating and needing more intensive
support
You have discussed your concerns with the multidisciplinary team and you all agree that an admission to ITU is not
clinically indicated. You also all feel that CPR would not be successful and that a cardiac arrest would likely be a
terminal event for Beryl. You wish to discuss these issues with Beryl.
Questions
1. Write down three things you would do to prepare for this conversation?
2. Write a three sentence introduction you would use to start the conversation?
3. What key items would you like to include in this conversation?
4. Write down three ways you can support Beryl and her family during this conversation?
Answers
1. Consider time, space, environment, who needs to be present and who Beryl wishes to be present. Have a
good understanding of Beryl’s history and likely prognosis and trajectory of disease
2. Introduce self, explain purpose of consultation and assess Beryl’s understanding of her current disease state,
how much she wishes to know and wishes for her family to know. E.g. ‘Hello, my name is ____, I am a ____.
I’ve come to see you today to talk about your admission so far, discuss where things are for you and plan for
your care. Can I ask what you understand by the current situation?’
3. Consider including: details of current situation, deterioration, prognosis , trajectory, and potential
symptoms, ceiling of treatment, patient wishes and preferences, DNACPR decision making and a plan of care
4. Methods of supporting Beryl and her family include: regularly checking how much information Beryl and her
family wish to hear, using simple, clear language, ascertaining Beryl’s preferences and wishes for care,
actively listening, confirming Beryl’s understanding of what is being discussed, answering questions honestly
and openly, provide sources of additional support
E. References, further reading and resources regarding formally documenting wishes and preferences
 Leadership Alliance for the Care of Dying People (2014) ‘One Chance to Get It Right’ Accessed 19th January
2015: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/323188/O
 Social Care Institute for Excellence (undated) End of Life and Palliative Care: Thinking About The Words We
Use Video Accessed 19 February 2015 http://www.scie.org.uk/socialcaretv/video-player.asp?v=palliativecare-or-end-of-life-care
 E-learning for Healthcare e-ELCA Communication. End of Life Care (undated) See videos: ‘03_05 Culture and
Language in Communication’ Accessed 19 February 2015 http://www.elfh.org.uk/media/160483/Revised_ELCA_topic_matrix_-_Jan15.pdf and http://www.elfh.org.uk/programmes/end-of-life-care/
 Baile W et al (2000) SPIKES- a Six Step Protocol for Delivering Bad News: Application to the Patient with
Cancer. The Oncologist vol. 5 no. 4 302-311 Accessed 19th February 2015:
http://theoncologist.alphamedpress.org/content/5/4/302.full
 E-learning for Healthcare e-ELCA Communication. End of Life Care. Advance Care Planning 01_01 – 01_04
Accessed 19th February 2015 http://www.e-lfh.org.uk/media/160483/Revised_ELCA_topic_matrix__Jan15.pdf and http://www.e-lfh.org.uk/programmes/end-of-life-care/
 Fallowfield L, Jenkins V (2004) Communicating sad, bad and difficult news in medicine. The Lancet. 363,
9405, 312-319
 General Medical Council (2010) ‘Treatment and Care Towards the End of Life: Good Practice in Decision
Making’ GMC Accessed 19 February 2015: http://www.gmcuk.org/static/documents/content/Treatment_and_care_towards_the_end_of_life_-_English_0914.pdf
 Office of Public Guardian (2005) ‘Mental Capacity Act: Making Decisions’ Accessed 10 March 2015:
https://www.gov.uk/government/collections/mental-capacity-act-making-decisions
 Royal College of Physicians and Marie Curie (2014) National Care of Dying Audit Accessed 10 March 2015:
https://www.rcplondon.ac.uk/sites/default/files/ncdah_national_report.pdf
 Warnock C (2014) Breaking bad news: issues relating to nursing practice. Nursing Standard. 28, 45, 51-58
 Department of Health (2009) Religion or belief: a practical guide for the NHS’ London
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NHS for Scotland (2006) Spiritual Care: A Multi-Faith Resource for Health Care Staff Accessed 3rd March 2015
http://www.nhs-chaplaincy-spiritualcare.org.uk/MultiFaith/multifaithresourceforhealthcarechaplains.pdf
Borg L and Noble H (2010) Psychological issues associated with end-stage cancer patients End of Life Care
Journal 4, 2
Gauthier DM (2008) Challenges and opportunities: communication near the end of life. Medsurg Nursing 17,
5, 291-296
R (David Tracey) v Cambridge University Hospitals NHS Foundation Trust & Ors [2014] EWCA Civ 822
Accessed 3rd March 2015: https://www.judiciary.gov.uk/wp-content/uploads/2014/06/tracey-approved.pdf
Resuscitation Council UK (2014) Preliminary Statement Tracey Judgement Accessed 3rd March 2015 :
http://www.resus.org.uk/pages/Statements/Statement_Tracey_judgement.pdf
GMC, Resuscitation Council UK, RCN (2014) Decisions Relating to Cardiopulmonary Resuscitation 3rd Edition
Accessed 3rd March 2015:
http://www.rcn.org.uk/__data/assets/pdf_file/0005/595103/Decisions_related_to_CPR_final.pdf
BMJ (2014) Doctors should consult patients before imposing non-resuscitation notices unless it would cause
harm, Court of Appeal rules 348: g4094 Accessed 3rd March 2015 http://dx.doi.org/10.1136/bmj.g4094
Samanta J (2015) Tracey and Respect for Autonomy: Will the promise be delivered? Medical Law Review
Accessed 3rd February 2015:
http://medlaw.oxfordjournals.org/content/early/2015/02/24/medlaw.fwv003.full.pdf+html
Fritz Z, Cork N, Dodd A and Malyon A (2014) DNACPR decisions: challenging and changing practice in the
wake of the Tracey judgement Clin Med 14 (6) 571-6 Accessed 3rd March 2015:
http://www.ncbi.nlm.nih.gov/pubmed/25468838
Resources regarding formally documenting wishes and preferences
 Dying Matters (undated) ’How to Help Your Patients Plan’. Accessed 19th February 2015:
http://www.dyingmatters.org/gp_page/how-help-your-patients-plan
 St Christopher’s Hospice (2014) ‘Advance Care Planning’ Accessed 19th February 2015:
http://www.stchristophers.org.uk/leaflets/advance-care-planning
 Macmillan (2012) Preferred Priorities of Care document Accessed 19th February 2015:
http://www.macmillan.org.uk/Documents/Cancerinfo/ACPPreferredPrioritiesforCaredocument.pdf
F. The Tracey case
The case
 The central issue of the Court of Appeal decision in R (Tracey) v Cambridge University Hospitals NHS
Foundation Trust & Ors [2014] concerned whether competent adults should be involved in the decisionmaking process for DNACPR decisions.
 Janet Tracey had a terminal lung cancer diagnosed two weeks before she was admitted to Addenbrooke’s
Hospital, Cambridge on 19 February 2011 after sustaining a cervical fracture in a road traffic accident. A first
DNACPR notice was placed in her records on 27 February, without discussion with Janet or her family (Janet
had repeatedly informed the staff of her wish to be involved in all decisions regarding her care, writing notes
to staff stating ‘Please do not exclude me’). The DNACPR was removed and cancelled three days later after
discovery and objection by the Tracey family. On 5 March, Janet Tracey markedly deteriorated and several
attempts were made the clinical team to discuss CPR but at this stage Mrs Tracey indicated she did not wish
to participate in discussions around end of life care and DNACPR. A second DNACPR notice was completed
on discussion with Mrs Tracey’s family.
 Janet died on 7 March 2011. The court case involves the first DNACPR.
 The Court of Appeal heard the case after overturning a decision by a High Court judge that a challenge to the
first notice should not go ahead because it had been in place for such a short time and had had “minimal
causative effect.”
The judgement
 The judgement stated that by failing to discuss the making of the first DNACPR decision with a patient who
had capacity and had expressed a clear wish to be involved in discussions about her treatment Cambridge
University Hospitals NHS Foundation Trust was in breach of Janet Tracey’s human rights under Article 8 of
the European Convention on Human Rights. “A DNACPR decision is one which will potentially deprive the
patient of lifesaving treatment,” said Master of the Rolls, Lord Dyson. “There need to be convincing reasons
not to involve the patient.”
 Article 8 encompasses how individuals choose to pass the closing days of their lives and how they manage
their death since this involves a person's ‘autonomy, integrity, dignity and quality of life’ *. Respect for
autonomy requires patients to be involved in decision-making that concerns them.
 If the healthcare team is as certain as it can be that a person is dying as an inevitable result of underlying
disease or a catastrophic health event, and CPR would not re-start the heart and breathing for a sustained
period, CPR should not be attempted. It should be discussed in full with a competent patient and their
family, who should be consulted and informed of the decision-making process
 The judgement acknowledges there are situations where a patient may be distressed by being consulted
about DNACPR and that this distress may cause harm. The distress must be likely to cause the patient actual
physical or psychological harm to warrant them not having the decision discussed with or explained to them.
The judgement has emphasised that doctors should be wary of being too ready to exclude patients from the
decision making process on the grounds that their involvement is likely to distress them.
 The judgment confirms that if a clinician considers that resuscitation will not work the patient cannot compel
the clinician to provide CPR, a position that resonates with general principles of law. This does not mean,
however, that the patient is not entitled to know that that clinical decision has been taken.
 The rationale behind the duty to discuss DNACPR is to ensure patients may obtain a second opinion in the
event that doctors do not consider resuscitation to be clinically indicated (even though is no legal obligation
to provide this). The GMC advises that “a second opinion should be from a senior clinician with experience of
the patient’s condition but who is not directly involved in the patient’s care. It should be based on an
examination of the patient by the clinician”.
Implications for practice
 If a patient lacks capacity and has a welfare power of attorney or guardian, this person must be consulted
about DNACPR decisions. Where there is disagreement between the healthcare team and an appointed
welfare attorney or court-appointed deputy about whether CPR should be attempted in the event of
cardiorespiratory arrest, and this cannot be resolved through discussion and a second clinical opinion, the
Court of Protection may be asked to make a declaration.
 A ‘best interest’ decision should be made where adults lack capacity and have not appointed a welfare
power of attorney or other legal surrogate or not made an advance decision refusing CPR. In England and
Wales the Mental Capacity Act requires that best-interests decisions must include seeking the views of
anyone named by the patient as someone to be consulted, and anyone engaged in caring for the person or
interested in the patient’s welfare. Under the Act, all healthcare professionals must act in the best interests
of a patient who lacks capacity.
 It is important to respect the wishes of patients who make it clear that they do not wish to talk about dying
or to discuss their end-of-life care including decisions relating to CPR. Such wishes should be documented
clearly, together with a plan to ensure that optimal care of the patient is not compromised. A sensitive and
skilled assessment should be made of how much information the individual person wants to know.
 Health Care Professionals should clearly and fully document all information provided, discussions and
decisions about DNACPR and of the reasons for them; including, when appropriate, the reasons why those
discussions were not possible or appropriate. Documenting is an essential part of high-quality care and often
requires documentation in the medical records of detail beyond the content of a specific DNACPR decision
form.
 Decisions about CPR should be reviewed at appropriately frequent intervals and especially whenever
changes occur in a person’s condition or in their expressed wishes. This applies to a decision that CPR is
appropriate as well as to a DNACPR decision. The frequency of review should be determined by the
healthcare professional responsible for their care and will be influenced by the clinical circumstances of the
patient.
References
 R (David Tracey) v Cambridge University Hospitals NHS Foundation Trust & Ors [2014] EWCA Civ 822
Accessed 3rd March 2015: https://www.judiciary.gov.uk/wp-content/uploads/2014/06/tracey-approved.pdf
 Resuscitation Council UK (2014) Preliminary Statement Tracey Judgement Accessed 3rd March 2015:
http://www.resus.org.uk/pages/Statements/Statement_Tracey_judgement.pdf
 GMC, Resuscitation Council UK, RCN (2014) Decisions Relating to Cardiopulmonary Resuscitation 3rd Edition
Accessed 3rd March 2015:
http://www.rcn.org.uk/__data/assets/pdf_file/0005/595103/Decisions_related_to_CPR_final.pdf
 BMJ (2014) Doctors should consult patients before imposing non-resuscitation notices unless it would cause
harm, Court of Appeal rules 348: g4094 Accessed 3rd March 2015 http://dx.doi.org/10.1136/bmj.g4094
 General Medical Council (2010) Treatment and care towards the end of life: good practice in decision
making. London: GMC


Samanta J (2015) Tracey and Respect for Autonomy: Will the promise be delivered? Medical Law Review
Accessed 3rd February 2015:
http://medlaw.oxfordjournals.org/content/early/2015/02/24/medlaw.fwv003.full.pdf+html
Fritz Z, Cork N, Dodd A and Malyon A (2014) DNACPR decisions: challenging and changing practice in the
wake of the Tracey judgement Clin Med 14 (6) 571-6 Accessed 3rd March 2015:
http://www.ncbi.nlm.nih.gov/pubmed/25468838
G. Activities handout
Activity 1
Reflect on the film and:
1. Give three examples of poor practice demonstrated by Dr Evans during the conversation. How did this
impact on those present? Have you witnessed similar in your own practice and how can you avoid this type
of behaviour, language and practice? What would you do differently to Dr Evans?
2. Give three examples of good practice demonstrated by Dr Evans. How do you think you might use these in
your own practice?
3. Explore and describe the emotions felt by Grace during the course of the conversation. What emotions do
you think she felt towards Dr Evans in the ….. [First quarter of conversation]? Do you think this changed as
the conversation progressed and why?
4. Based on James’ wishes and preferences, create a plan of care
Alternative Activity 1: Beryl
 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
 You feel very concerned that the diuretic treatment and intravenous antibiotics are no longer working
effectively and Beryl’s prognosis is very uncertain, possibly as short as weeks. You are not sure that
admission to ITU is clinically indicated in event of Beryl further deteriorating and needing more intensive
support
You have discussed your concerns with the multidisciplinary team and you all agree that an admission to ITU is not
clinically indicated. You also all feel that CPR would not be successful and that a cardiac arrest would likely be a
terminal event for Beryl. You wish to discuss these issues with Beryl.
1.
2.
3.
4.
Write down three things you would do to prepare for this conversation?
Write a three sentence introduction you would use to start the conversation?
What key items would you like to include in this conversation?
Write down three ways you can support Beryl and her family during this conversation?
Activity 2
Ask participants to form pairs and reflect on their own practice and experience:
1. Discuss why it is important to ascertain what the patient wishes to know and how much the patient wishes
his/her family to know at the beginning of the conversation.
2. Ask participants to reflect on examples from their clinical practice when this has and hasn’t been undertaken
and the implications of this
3. Discuss phrases that could be used to assess how much information the patient wishes
Activity 3
Consider simple, plain, non-technical alternatives and/or definitions the following words or phrases commonly used
in end of life discussions that could be used in conversation with patients and those persons important to patients:
1.
2.
3.
4.
5.
6.
7.
8.
Metastasised
Organ failure
Advanced Care Planning
Palliative Care
CSCI (Continuous Subcutaneous Infusion)
Cardiopulmonary resuscitation
Terminal condition
Multidisciplinary Team
Activity 4
Identify James’ wishes and preferences for care:
1. What was important to him?
2. How did Dr Evans identify and explore these wishes?
3. How did Dr Evans respond to and support James’ wishes? Was this good practice and if so, why?
Activity 5
Following the conversation element of the film discuss the following in their pairs:
1. What are James’ religious needs?
2. From what you have observed in the film, what are James’ spiritual needs?
3. How would you explore and support his spiritual needs?
Activity 6
1. How did Dr Evans discuss and ascertain James’ wishes regarding ceiling of treatment?
2. Discuss the advantages of establishing a ceiling of treatment.
Activity 7
1. Reflect on your own practice of undertaking or observing DNACPR discussions. What went well and what
didn’t go so well? What phrases or language was inappropriately or poorly used? What phrases or language
did you feel worked well and are examples of best practice?
Activity 8
1. Reflect on an end of life conversation that you may have been part of, either leading the conversation, taking
part or observing the conversation. This conversation may have included discussion around a patient’s
deterioration, prognosis, ceiling of treatment, DNACPR and treatment and care plans
2. Objectively write down the example from practice. Questions to consider include: What exactly happened?
Why did we deal with the situation in that way?
3. Discuss and identify any emotions and feelings you felt during the episode and emotions that may have been
felt by others present. This could include other health care professionals, the patient and persons significant
to the patient. What were your feelings about the episode? How did it affect you? What was the impact on
the team? What was it like from the patient’s perspective?
4.
Evaluate and analyse your experience. Consider questions including: What did you learn from this episode?
How will you change your practice? What would you do differently next time?