1. Preparing for a death in the community
Teaching Notes
Give out a confidence questionnaire (can be found on DVD) prior to the session for participants to complete.
Welcome, introductions and review of the objectives of the session.
Introduce yourself and your role in their community
Ask participants for a show of hands (ensure they know they won’t get ‘picked on’)
1. Who has looked after a dying patient in the last week/ in the last month/ in the last year/ never?
2. Are there any questions or concerns before starting?
Discuss the ‘note of caution’
Setting ground rules for the session, e.g. confidentiality, ask questions as you need, listen to each other.
Check phones are on silent or vibrate if possible

2. The Last Phase of Life – The Barnet Perspective

3. The last phase of life : Out with the old and in with the new
Teaching Notes
Before discussing the objectives on the slide:
Ask the participants to spend a minute thinking about what they want to get from the session
Ask for each participant to introduce themselves and their roles along with a main objective and note this down to come back to at the end of the session
Go through the objectives and try to pull in as many participants objectives as possible.

4. Case Study – Part 1 Teaching Notes
Before discussing the objectives on the slide:
Ask the participants to spend a minute thinking about what they want to get from the session
Ask for each participant to introduce themselves and their roles along with a main objective and note this down to come back to at the end of the session
Go through the objectives and try to pull in as many participants objectives as possible.

5. What do we usually see over time for a person with Cancer?
Teaching Notes
Pose slide title as a question to the group before showing the graphs and talking them through. The slide should have animation so that the initial click will bring up the question and a further click will bring up the graph.
Usually the decline in a person with cancer is somewhat predictable and can occur very gradually over years. Often the terminal deterioration is over months to weeks, depending on treatments that they are receiving or are available
People are able to maintain physical function over a period of time but then that function will decline relatively rapidly and that decline will be relatively constant
The decline to death can be quick which is why early recognition of deterioration is important so the person’s needs can be anticipated and wishes regarding care can be explored before the person deteriorates
References
Murray et al. Illness trajectories and palliative care. BMJ 2005; 330: 1007e11
Source: Murray SA et al BMJ 2005

6. What do we usually see over time for a person with Organ Failure?
Teaching notes
Pose slide title as a question to the group before showing the graphs and talking them through. The slide should have animation so that the initial click will bring up the question and a further click will bring up the graph.
This pattern is often seen in those with heart failure and chronic obstructive pulmonary disease
Patients are often ill for months or years with multiple, rapid and significant dips in function, representing acute, often severe exacerbations on a background of declining function
These dips in function are often associated with admission to hospital and intensive treatment
This is less easy to predict than the trajectory for cancer as each dip has the potential to result in death. It is difficult to accurately predict which decline will be terminal and so the timing of death remains uncertain and may still seem sudden despite a prolonged illness
References
Murray et al. Illness trajectories and palliative care. BMJ 2005; 330: 1007e11
Source: Murray SA et al BMJ 2005

7. What do we usually see over time for a person who is Frail or Elderly?
Teaching notes
Pose slide title as a question to the group before showing the graphs and talking them through. The slide should have animation so that the initial click will bring up the question and a further click will bring up the graph.
This graph represents the usual trajectory for frail or elderly patients as well as those who suffer from dementia
These patients start with the lowest level of functioning of the three groups with low baseline of cognitive and/ or physical functioning
Their disability is progressive but the differences seen in their clinical condition occur over a relatively long period of time, possibly years and may be very subtle and are fluctuant
Often these patients may lose weight and functional capacity and may then die due to a seemingly minor physical event that seems trivial but when occurring in combination with declining reserves, can prove fatal. Patients in this category may die from a fractured neck of femur after a fall or a pneumonia
References
Murray et al. Illness trajectories and palliative care. BMJ 2005; 330: 1007e11
Source: Murray SA et al BMJ 2005

8. Disease Trajectories Teaching Notes:
For a 1 hour session, read through the teaching notes on slides 11, 12 and 13 to prepare to
explain these three trajectories and then go through each of them with the group.
Another look at the three main trajectories of decline at end of life.
These graphs are based on a whole population and so need to be treated with caution when making a prognosis for the individual patient in front of you
Remember everyone is different and do not all fall in line with the trajectories. These are helpful guides, but best clinical judgement should be used
References
Murray et al. Illness trajectories and palliative care. BMJ 2005; 330: 1007e11
Dy and Lynn. Getting service right for those sick enough to die. BMJ 2007; 334: 511

9. Fragmented team working
Why is it difficult to recognise deterioration?
Fear
Focus on specific results rather than the overall picture
Unrealistic expectations
Cure Culture
Hope
Time
Responsibility
Personal Grief Experiences
Poor communication
Culture and/ or religious reasons
Questions to the group:
Can people recognise these factors in their own practice? Have they seen this play out in other people’s practice?
Teaching Notes
Use the diagram above to discuss the factors that make it difficult for us to recognise deterioration in patients. The factors above are roughly split into; resources (purple), personal aspects (pink), attitudes and behaviours (green), illness/ medical (blue) and communication (orange)
It can be complex and difficult to know when someone is deteriorating to the point where they will not recover
Being disease focused rather than patient focused can increase complexity. There may also be a focus on specific results rather than the patient and their overall condition, e.g. focus on scan results rather than patient’s functional status
Responsibility and fragmented team working are especially important in community working
Responsibility to ‘recognise deterioration’ is often seen as someone else’s and is passed from professional to professional. Traditionally, it has been seen as the responsibility of a senior medic, however, it may well be that they do not know the patient best
The team caring for a patient in the community is often fragmented either by geography or as they work within different departments, e.g. the patient may be on the border of a catchment area meaning that teams are working together when this is not the norm. Poor continuity of care (due to the need to cover nights and out of hours) makes it more difficult to follow a plan of care through
Most people who work within healthcare tend to be used to helping people to get better and so often the focus has to shift from cure to comfort
Uncertainty can be a difficult concept to explain to patients and their carers. Some staff may not feel comfortable saying that they do not know
Withdrawing and withholding treatment has been the subject of many media reports and legal actions and this means that professionals feel more fear and anxiety around discussing this
Fear can be a barrier for a number of reasons; fear of being wrong, or right, fear or dread of the reaction that conversations will receive from the patient or family
Hope is a complex concept. We often do not want to give up hope that a patient or relative will improve, even when the chances of recovery are slim. Carers of patients are often fearful of taking away patient’s hope when discussing their deteriorating condition*
Some patients and carers may have been brought up with certain cultural values that mean discussing deterioration and end of life are more difficult. Health care professional may also be concerned about discussing deterioration with a patient whose cultural beliefs and values they do not fully understand
As professionals our own personal experiences will impact on the way in which we behave or cope in certain situations
References
* Olsman et al, Should palliative care patients’ hope be truthful, helpful or valuable? An interpretive synthesis of literature describing healthcare professionals’ perspectives on hope of palliative care patients, Pall Med 2014; vol. 28, 1: 59-70
Gardiner et al. Provision of palliative and end-of-life care in stroke units: A qualitative study. Pall Med 0(0)1-6
Hockley J, Dewar B, Watson J. Promoting end-of-life care in nursing homes using an ‘integrated care pathway for the last days of life’. Jour Pall Nursing 2005 vol 10(2)
Coackley A, Ellershaw J (2008) The terminal phase. Medicine 36(2),
Concerns about withholding and withdrawing treatment
Lack of information about the patient
Not wanting to admit uncertainty
Disease vs patient focus

10. Prognostication General ‘Rule of Thumb’
Assessing Functioning with Performance Scales
ECOG (Eastern Co-operative Oncology Group) Performance Score (Adapted)
Asymptomatic
Fully active. Able to carry out all pre-disease activity. 1
Symptomatic but ambulatory
Restricted in physically strenuous activity. Can carry out light/ sedentary work 2
Symptomatic, <50% in bed during day
Ambulant. Able to carry out all self care. Unable to work. 3
Symptomatic, >50% in bed during day
Limited self care. Confined to bed or chair >50% of waking hours 4
Bedbound
Unable to carry out self care. Totally confined to bed/chair 5
Death
Question to the group:
What might you observe that helps you to decide how long someone may have to live?
Expected Responses:
Previous function and rate of decline, current abilities and functioning, indicators of illness severity (e.g. NYHA classification for heart failure, spirometry for COPD, bulbar symptoms in Motor Neurone Disease), weight loss, number of hospital admissions/ readmissions
Teaching Notes
There are multiple ways of deciding a patient’s prognosis with varying predictability but it is notoriously difficult to predict when someone will die
Due to this uncertainty it is best not to give exact timeframes, although patients and those important to them may press for this
If you are asked about prognosis it is a good starting point to find out what the person asking the question thinks to help frame your answer
A ‘general rule of thumb’ to use is to look at rate of functional deterioration:
If the patient is functionally deteriorating month on month they have months, week on week they have weeks, day on day they have days and hour by hour they have hours
When applying this principle you also need to take into consideration their disease or illness and possibilities for further disease altering treatment
In addition, there are a number of ways to determine functioning (see slide) ECOG (Eastern Co-operative Oncology Group)Performance Scale. Others include; Karnofsky Scoring System, Palliative Performance Scale
References
Murray S, Using the ‘surprise question’ can identify people with advanced heart failure and COPD who would benefit from a palliative care approach. Pall Med vol 25, no 4 382
Lund S, Stone P. Predicting survival in patients with advanced cancer Eur J Pall Care vol 20 number
Watson M, Lucas C, Hoy A, Wells J. Oxford Handbook of Palliative Care 2nd Edition OUP Oxford
Olken et al. Toxicity and response criteria of the European Cooperative Oncology Group Am J Clin. Oncol. 5 (6):
Buccheri et al. Karnofsky and ECOG performance status scoring in lung cancer: a prospective or longitudinal study of 536 patients from a single institution. Eur J Cancer 1996 Jun;32A(7):

11. Part 2

12. Teaching Notes
The SPICT tool is one of a number of tools. It has two parts; the first gives general indicators of deteriorating health and the second gives more disease specific clinical indicators. The two parts should be used together and in conjunction with your clinical expertise.
References
NHS Lothian and University of Edinburgh (2015) Supportive and Palliative Care Indicators Tool (SPICT) Available at (accessed 11/12/2015)