Palliative/ end of life care MOSLER
Case:
Patient is having confusion and drowsiness, bed bound, only few days left to live, signed
DNACPR form. Partner is now here for you to talk about what happen next.
Really sorry you are in this situation; it must have put both of you in stress.
If it’s alright with you can we have a chat of a form call CPR.
Have you heard of CPR by any chance?
1. the patient’s wishes, preferences or fears in relation to their future treatment and care
2. the feelings, beliefs or values that may be influencing the patient’s preferences and
decisions
3. the family members, others close to the patient or any legal proxies that the patient
would like to be involved in decisions about their care
4. interventions which may be considered or undertaken in an emergency, such as
cardiopulmonary resuscitation (CPR), when it may be helpful to make decisions in
advance
5. the patient’s preferred place of care (and how this may affect the treatment options
available)
6. the patient’s needs for religious, spiritual or other personal support.
History taking
1. Identity of the partner (LPA with consent)
2. Partner’s understanding – What do you understand about the px so far? What is your
ideas concerns and expectations? What about patient’s ICE. How much do you want to
know?
3. Patient’s wishes and fears - Did he clearly expressed anything in the past, his preferred
place of care, is his last wishes fulfilled?
4. Patients beliefs
5. Patient’s biopsychosocial (medical needs, social care, patient wishes, spiritual/ cultural
needs (chaplain), occupational therapy, mental wellbeing).
6. Does he currently have symptoms, drooling, pain (severity, nature, impact on life,
mood), anything changed?
7. Discussion of DNACPR,
8. LPA (the family members, others close to the patient or any legal proxies that the
patient would like to be involved in decisions about their care)
ADRT etc.
9. the patient’s needs for religious, spiritual or other personal support
Speech:
Good morning, sir, is it ___. I am Jun, one of the doctors on the ward. I am here this morning to
speak about your ___. Before I continue, it would be good for me to know just how much you
know about her condition at the moment, do you mind telling me about it?
That’s right, his condition has _____, cancer has spread to the brain. Her level of function has
been going downhill quite a lot, how do you think she is coping with the pain the last couple of
days? Do you feel the current painkiller she is on is working at all? A syrup? We think that it is
not working, and we suggest that we start her on a pump.
If px say no ask why not?
We never do anything to bring about anyone’s death quicker. It’s not our intention.
I appreciate that morphine in large doses can make people really drowsy and can potentially
affects the lucid episodes she had, that is why I suggest start a low dose and perhaps moving up
in small increments, see if can meet a sweet spot where she is pain-free and lucid.
Has he ever spoken to you about what is important to her in her last stages of her life?
SPIKES
1. Thank you for meeting me today. My name is Dr. So, we are meeting today to discuss
how to best manage your ___ condition relating to his cancer. Is this place okay or
would you like a side room? Would you like to bring along someone for support? Just to
confirm I have the patient’s consent to discuss this with you.
2. I just wanted to start by establishing what you understand about his condition
presently?
3. Some people would like to go into detail, other people would prefer to focus on specific
points, before I start, I just want to establish what you wanted to discuss and how much
detail you would like me to go into?
4. Unfortunately, I have some bad news for you. I am sorry to say ___.
5. Empathy – how do you feel?
6. Plan – When patients are nearing the end of life, there are specific targets for treatment
that we try to address pre-emptively.
7. Before we leave her today, I wanted to just summarise what we have discussed and how
we are going to manage your husband’s pain control/ other needs that may arise in the
coming days or weeks…”.
8. End: I know this is a really difficult conversation, I am so sorry for your husband, thank
you so much for having a talk with me.
Plan of management
Pain
To counteract pain, we prescribe medications that sometimes contain morphine.
If the patient is unable to take this by mouth, then we can give this by injection or
sometimes via a pump to keep on top of pain. One of the side effects of
morphine-based painkillers is constipation and so to avoid this we usually
prescribe laxatives to keep the bowels regular. Agitation is also common, and we
will prescribe medication that can be given in case this occurs.
The secondary effect of morphine is that it slows breathing, which can have the
effect of hastening death, however, that would not be our prime aim, which is
always to alleviate pain.
WHO pain ladder
Start with non-opioids (paracetamol, NSAIDs, aspirin)
If uncontrolled, then try add in opioid for mild to moderate pain such as codeine
If still pain, opioids for moderate to severe pain such as morphine or
diamorphine)
Start low and go slow, laxatives and antiemetics can be given.
Adjuvants can be added at all steps include NSAIDs, amitriptyline, pregabalin,
steroids, TENS and radiotherapy.
Epidural –
Neuropathic pain – gabapentin or SSRIs
Intestinal colic – hyoscine butylbromide
Give enough explanation and reassurance
Liaise with the acute pain service
I understand that must be very distressing. There are definitely other options we
can think about and we do work closely with our palliative care team. One of the
option is a pump system, a small needle, deliver medications continuously, we
can put different things on that, more consistent painrelief, medications that help
with agitation, and also secretions in his mouth.
Further
I will liaise with the ward sister to allow you to remain by the patient 24 hours a
day if wished.
Discuss with the Macmillan nurse or the palliative care team to decide on the
appropriate dose.
The Macmillan team would be available to you who could provide further
assistance and support with pain and symptom management in end-of-life care.
Agitation I understand that must be really distressing, often when people are very unwell
and deteriorating, it can be the way in which things happen which is fluctuating,
people can be more alert one second and then drowsy the next, our goal of
treatment is to make somebody as comfortable as possible.
Scenario
How many
days?
Can she
wait, my
relative is
coming to
see her in 2
days
Can you not
give her the
IV
morphine,
it is making
her very
drowsy.
Response
When it comes to the end of life, it is very hard to predict. The morphine can
make her drowsy but our concern is that she is in pain. When your brother
come, we can try to wean her down a bit, providing that she is not in worst
pain. Unfortunately when it comes to end of life, there are no certainties, we
can’t predict how long, it may well be that as the disease progress, she will
become less responsive, and there won’t be anything we can do about that.
The most important thing is we make sure in making him comfortable as much
as we can until that point, but I am sorry I can’t provide you a precise answer
on that, I think we just have to watch and monitor the situations as time goes
by.
We never do anything to bring about anyone’s death quicker. It’s not our
intention.
I appreciate that morphine in large doses can make people really drowsy and
can potentially affects the lucid episodes she had, that is why I suggest start a
low dose and perhaps moving up in small increments, see if can meet a sweet
spot where she is pain-free and lucid.
We are dutybound to her to make sure she is painfree.
What
happen is
she okay?
As part of approaching the end of life, people can sometimes get agitated,
have secretions, get nausea and vomiting, there is other drugs we can put in a
pump to manage each of the symptoms individually as they manifest. We will
be keeping a very close eye on her, to keep her as comfortable as we possibly
can. Is there anything I can do for you at this point? If anything comes to mind,
please do get hold of me.
Relative
gives
information
You don’t
know
Patient cry
That’s really valuable information, thanks its good to hear your findings in a
day to day basis.
I will have a discussion with the ____ team to decide on.
Take a moment
Examiner questions
Ethical principles
In some cases, it is possible to follow a patient’s
wishes given when lucid which considers the
principle of autonomy.
Other principles are beneficence and nonmaleficence in terms of symptom control.
It is important to consider family wishes but our
duty is to the patient.
When would you discuss a DNAR?
Best practice is that it should always be discussed,
even if the patient lacks capacity or fails to
comprehend the discussion.
If the discussion causes harm to the patient,
physical, psychological or otherwise, it may be more
appropriate to talk to close relatives or next of kin.
The final decision lies with the medical team,
however, It is important and considerate to hold
those discussions.
When it comes to discussions at the end of life, it is important if we discussed it earlier. Will it
be okay if we discuss it now?
Is there anyone you would like to be with you?
When we give people a tube to sustain breathing, it is not something that they want,
LPA
Is there anyone you would like to speak on your behalf, should you
lose the capacity to make a decision, it is something called the lasting
power of attorney.
It can be more than one person
Health and welfare – refuse not demand treatment
Property and financial affairs
Process:
1. choose
2. fill up form
3. register at office of the public guardian
DNACPR
MDT members
Who are involved in the APC discussion – social care
Advanced statement
of wishes and
preferences
ADRT
A legally binding document about what medical treatment you would
not want in the future, if you lack capacity to say so.
Limitations
- patient cannot specify which treatments they want
Examiner questions:
Who will receive a
copy of these
documents?
GP
Care homes
Hospital record
Examiner script:
History taking: Focus here is:
 patient’s ICE (last wishes, preferences)
 partner’s ICE (understanding of patient’s condition and treatment options)
 End of life symptoms that the patient may have
 Any previous ADRT, LPA,
 4 aspects: physical, psychological, social, spiritual
Candidate should:
*empathetic is important: avoid saying phrases like “I understand” because you simply do not.
Instead say something along the lines of “I can see this news was a huge shock, I am really sorry
about that, I can’t imagine what it’s like to feel like that”
*encouraging questions is an integral part of advance care planning
*in this case the patient has capacity but if you are in doubt assess the patient’s capacity to
understand, retain, weigh and communicate his decision to you
1. Explain about the DNAR
- it is the medical teams decision
- “we feel it would be kinder and more appropriate to ensure he is not in any pain or distress in
the last moments of his life. If it were to get to the point where his heart was to stop, we would
not try to restart it.”
- “your husband will still receive all of the treatment, it is just when he reaches the natural end
of his life, we would not do chest compressions and shock to restart it, because this can cause a
lot of pain and distress and prolong suffering.
- “even if your husband survives, he is often more disabled after and left with a quality of life he
would not want”
2. Lifespan: When it comes to the end of life, it can be hard to say, but it can range from
days to weeks. Our priority is to make him as comfortable as possible.
3. Management:
 His care should be a shared decision between his family and the healthcare
professional.
 Pain: it may be neuropathic pain related to his diabetes, ischaemic pain related
to peripheral vascular disease and bone pain from osteoporosis.
WHO pain ladder for people with stage 5 CKD.
Step Paracetamol 1g qds
1
Step Tramadol 50-100mg qds AVOID codeine, dihydrocodeine and
2
dextropropoxyphene
Step Moderate pain and outpatient/at home: buprenorphine, oxycodone,
3
hydromorphone or fentanyl. Evidence suggests that fentanyl is the safest drug
to use in stage 5 CKD
Severe pain and inpatient: Fentanyl (25 mcg starting dose) subcutaneously as
required, then in a continuous subcutaneous infusion if necessary.
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Pruritus: uraemic pruritus: correction of high calcium, parathyroid levels, use
emollients liberally if xerosis or antihistamine
Tiredness: anaemia due to decrease EPO production, give EPO injections
Swollen: fluid overload – avoid salty food and reduce fluid intake, furosemide
may be needed
Nausea: give anti-emetics
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4. MDT
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Muscle cramps: give antimuscarinic
renal supportive and palliative care nurse specialist will be supporting your
husband and liaise with GPs and district nurses to best manage his other
comorbidities such as diabetes
Referral to dietician for nutrition and supplements. His other treatment, if
deemed not improving his life or act as burden, some of the medications may be
stopped.
Social workers or renal counsellors.
Bereavement support
Spiritual care such as the chaplain
Geriatrician coordinate care
5. Advanced care planning
- I would like to discuss with you about advance care planning
- advanced statement of wishes and preferences: do you and your husband have any wishes
and preferences related to his future treatment and care
- 5 steps (step 1 think, step 2 talk with family and friends, step 3 write it down, step 4 discuss
with GP step 5 share)
- which he would not want to happen? (such as a feeding tube, antibiotics, artificial organ
support, IV fluids, blood transfusions that was mentioned previously)
 ADRT
 EHCP (emergency health care plan)
6. Summarise: so today we have went through both you and your husbands thoughts and
preferences to treatment, some symptoms he was having and have a discussion and
come together with a plan on how best to manage his condition. Do you have any
questions?
 In case you do have any now and then, I’ll give you our contact details with some
leaflets with further information.
 I know this is a really difficult conversation, I am so sorry for your husband, thank
you so much for having a talk with me.
 Should you require any spiritual and psychological support please let us know
Questions for candidate:
1. Should the patient still have mental capacity and 1-2 years predicted lifespan, do you
know the name of a particular legal document that lets the patient to appoint one or
more people to help them make decisions on their behalf?
 Lasting power of attorney (LPA)
 2 types: health and welfare / property and financial affairs
 Health and welfare



o make decisions on daily routine such as washing, dressing, eating
o medical care
o moving into a care home
o life-sustaining treatment
property and financial affairs
o selling home
o managing bank account
Register with the office of the public guardian
Cost 82 pounds
2. What are the symptoms people experienced in the end of life?
 Divided into CNS: delirium confusion agitation drowsiness
 GI: nausea and vomiting, constipation
 Respiratory: SOB, Cheyne-stokes breathing, terminal secretions
 GU: incontinence
 Skin: mottled
 Pain
3. do you know any signs that are suggestive of patient entering last stages of his life
 Agitation
 Cheyne-stokes breathing
 Deterioration in level of consciousness
 Mottled skin
 Noisy respiratory secretions (terminal rattle)
 Progressive weight loss
 Increased fatigue and loss of apetite
 Social withdrawal
 Deteriorating mobility status
4. Can you tell me the medical management of a patient in end of life or palliative care setting?
Pain
Depending on the cause and follow the WHO pain ladder:
1. Cancer – morphine gold standard
2. colic pain – anticholinergic such as hyoscine butylbromide
3. muscular pain or spasm – benzodiazepines
4. neuropathic – amitriptyline
Breathlessness Oxygen if hypoxic
Morphine
N&V
Metoclopramide or haloperidol
Agitation
Midazolam or haloperidol
Terminal
Hyoscine butylbromide
secretions
Constipation
Lactulose or senna

Regular monitoring every 24 hours
5. Can this patient be allowed to die at home?

Tell the partner that you will discuss the possibility of moving the patient to a nursing
home or his house. It is usually feasible with community palliative care/ Macmillan
nurse visiting every day to help administer his medication and make sure he is
comfortable. Health care support worker and social worker can also pop in to help with
the housing such as cleaning, food, grocery shopping if she requires it.
6. when would it not suitable for the patient to be allowed to die at home?


Where the patient abruptly withdraw from dialysis
Stage of CKD is end stage
7. what are the indications to initiate a DNAR discussion?
Indications
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Terminal diagnosis
Frailty
Hospital discharge (before or after)
Increase in level of care/ deterioration in condition
Patient request
Best practice is that it should always be discussed, even if the patient lacks
capacity or fails to comprehend the discussion.
If the discussion causes harm to the patient, physical, psychological or
otherwise, it may be more appropriate to talk to close relatives or next of kin.
The final decision lies with the medical team, however, It is important and
considerate to hold those discussions.
8. let’s say this patient had a terminal cancer diagnosis, do you know any functional assessment
tool to assess their performance? (one of the ACE tutorial)
o Karnovsky score where a score of <50 means lower survival
o Barthel index which is typically use in stroke
o Nottingham Extended ADL scale focus on social participation such as driving
9. What help can a gp provide to this patient’s wife should he passaway? (bereavement
tutorial)
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be someone to talk to
help normalise what the person is going through e.g. thinking they are seeing or
hearing their loved one, feeling of relief after long illness
be able to help answer questions the family may have about the death
encourage a healthy lifestyle e.g. eating well, avoid excess alcohol, exercise
check in on the person in a few weeks to make sure they are doing okay
offer suggestions for ways to help manage problems such as difficulty sleeping or
feeling anxious/panicky
sleeping tablets can be used in the short term (start with around 4 days and no
more than 4 weeks) to help people who are struggling sleep
direct people to appropriate resources e.g. NHS inform
help people access bereavement counselling if this would be beneficial
practical things such as providing a fit note for work to give the person time and
space to grieve
http://www.gmc-uk.org/End_of_life.pdf_32486688.pdf
https://www.nice.org.uk/guidance/ng31
https://www.goldstandardsframework.org.uk/cdcontent/uploads/files/General%20Files/Prognostic%20Indicator%20Guidance%20October%202
011.pdf
MLE tutorial