Key facts:
Authors: Jodie Morris and Ann Corbett
Top Tip: End-of-life care is a skill, that can be done well or badly; the family will remember you forever if you get it right
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Key Differential Diagnosis
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Patient not in terminal phase of dying
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Key Investigations
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No investigations
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Key Treatments
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1. Stop invasive therapies eg dialysis, chemotherapy
2. Stop any unnecessary investigations or treatments (drugs (incl AB), IV/SC fluids)
3. Change other drugs to an appropriate route (eg SC)
4. Write up PRN ('MMHHC')
SC MORPHINE 2.5-5.0 mg (pain)
SC MIDAZOLAM 2.5-5 mg (restlessness)
SC HYOSCINE HYDROBROMIDE 400 mcg (respiratory secretions)
SC HALOPERIDOL 2-10 mg (N/V)
SC CYCLIZINE 50 mg or SC METOCLOPRAMIDE 10 mg
Note: change drug to syringe driver if given >2x/24hrs
5. Ask senior to fill out DNR form
6. Provide an appropriate environment (side room?)
www.palliativedrugs.com
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Key Management Decision
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Send home (quickly) or admit
(ie environment patient wants for death)
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Background
First of all , ask yourself, is the patient really in a terminal phase of dying?; see 'signs'' of dying below. It is not appropriate to initiate an 'end-of-life pathway' if they are not
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Introduction
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• Practitioners are free to exercise their own professional judgement. In other words, just because a patient comes in with a label of 'Ca something, with mets', it does not mean it is time to institute an end-of-life pathway. This decision should NOT be made by a junior doctor
• It is a consultant decision and he/she may well want to discuss this issue with the patient's GP and/or specialist consultant first (either of whom may have more idea of the patient's prognosis)
• Read all the letters you can, before you speak to anyone
• There has been renewed interest in this area since the publication of the NICE guidelines in Supportive and Palliative Care in 2004; and the launch of the NHS End-of-life Care Programme in 2005. The DoH's End-of-life strategy was launched in 2008. The Palliative Care Institute in Liverpool has been important in this initiative. As well as national guidelines, there are now specific guidelines for individual diseases (see references)
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Social change
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Life expectancy increasing
More older people living alone
More people living with multiple chronic conditions
More retired and/or isolated people
More families with less experience of death and dying
Death and dying is a 'social taboo'
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Epidemiology
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Approx 530,000 deaths in England pa
85% of deaths >65y
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Causes
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25% cancer
19% heart disease
14% respiratory disease
11% strokes and related disorders
31% other
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Types
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Death at home or hospital
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Symptoms
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It is essential to recognize the symptoms of the terminal phase of dying in order to care appropriately for people at the end of life. Diagnosing the dying state is not always easy. People are likely to be in the terminal phase of their illness when they:
Deteriorate day by day or faster because of their underlying condition
Express a realization that they are dying
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Key questions
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"Have you been told how much longer you have to live?"
"Do you realise that you are dying?" (don't avoid the 'D' word)
Note: there are guidelines about breaking bad news (see references)
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Signs (of terminal phase of dying)
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Signs of the terminal phase of dying are also not always easy to recognise. They include:
Reduced cognition
Reduced conscious level
Bed-bound
Taking little food or fluid, and difficulty taking oral medication
Peripheral cyanosis and cold
Altered breathing pattern
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Investigation
In general, do no investigations (or interventions) that would not improve symptoms
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Blood/other
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In general, do no investigations (or interventions) that would not improve symptoms
Except, if would affect:
1. Prognosis, eg creatinine in CRF, for conservative care
2. Symptoms, eg CXR, to differentiate pulmonary oedema from infection; if you would treat the oedema, to relieve symptoms
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Differential diagnosis
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Patient not in terminal phase of dying
And has some reversible condition that they would want reversed if they were able to tell you (eg, sepsis/dehydration in a patient with an estimated survival of 6 months)
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Treatment
Much of this section is derived from the Liverpool Care Pathway (Hospital), 2005 (pdf)
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Discussion with patient and family
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Explore understanding and provide an appropriate explanation of the situation to the person, family, and professional carers. If possible, ask the patient what they want to know first, and what type of death they want. Make sure relatives are aware of the dying phase. Use words like 'death' and 'dying'
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Ten principles of treatment
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1. Stop invasive therapies (eg dialysis, chemotherapy)
2. Stop any unnecessary investigations or treatments: drugs (eg statins, BP tabs; anything of no immediate gain); continue necessary ones (insulin, if eating); stop fluids, IV or SC
3. Change other drug treatments to an appropriate route (SC)
4. Control physical symptoms; by having commonly required medication available in hospital (write them up); eg oxygen, cyclizine, metoclopramide, haloperidol, morphine, hyoscine hydrobromide, and midazolam; write up TTOs, including these drugs, if sending home (then ask GP to give)
5. Ask senior to fill out DNR form; ie set realistic goals, in terms of treatment and resuscitation issues; discuss this issue with nursing staff
6. Inform chaplain service (religious and spiritual care)
7. Provide an appropriate environment; one which is comfortable and has an appropriate level of noise and activity for the person (eg side room in hospital, if they want one); and space for the family
8. Inform GP (even if keeping in hospital) + specialist team
9. Discuss organ/tissue donation with patient + family, if they want it
10. Provide information on what to do when death occurs and emergency contact numbers
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Treatment
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Drugs (write up PRN 'MMHHC' =)
SC MORPHINE 2.5-5.0 mg (pain)
SC MIDAZOLAM 2.5-5 mg (restlessness)
SC HYOSCINE HYDROBROMIDE 400 mcg (respiratory secretions); start early
SC HALOPERIDOL 2-10 mg (N/V; GI involvement/cerebral tumour)
SC CYCLIZINE 50 mg (N/V; drug-induced/biochemical) or SC METOCLOPRAMIDE 10 mg (N/V; gastric stasis)
Note: change drug to syringe driver if given >2x/24h; send home with these drugs, if going home
Palliativedrugs.com is an especially useful website
Procedures
IV line, if appropriate
OXYGEN, if hypoxic
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| Prescribing issues |
There are compatibility issues with syringe drivers (eg cyclizine should not be made up in small volumes). Use palliativedeugs.com |
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Key management
decision
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Send home (quickly) or admit
(ie environment patient wants for death)
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Stop
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Procedures:
Dialysis
Drugs:
Chemotherapy (after DW specialist)
Any drug that is not of immediate benefit (ie, most drugs)
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Admit?
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Usually
But if send home, need to do it quickly, after discussion with patient + family; and inform GP, and Macmillan Team
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Bed plan
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Medical admission ward
Appropriate specialist ward (patient may have 'base ward')
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Referrals
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Medical:
Palliative care team
Other:
Macmillan nurse
End-of-life facilitator, if you have one
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The Rest
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"There is such a thing as 'good death' " |
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Prognosis
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This can be surprisingly difficult. Senior members of the team, and the patient's GP and/or specialist may be able to help you. There is some guidance in this area:
[Ref]
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Discussion about prognosis
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Some people may ask not to know their prognosis. This should be respected and they should be given the opportunity to discuss it again at a later date
A discussion of prognosis should involve:
1. Identifying the person's own thoughts regarding their prognosis
2. Explaining the difficulty of providing an accurate prognosis
3. Providing a rough estimate only (eg days, weeks, months, years)
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Who can be managed at home
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Any patient that wants it, with the agreement of the family
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Follow-up (if send home)
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Macmillan Team
GP
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Don't forget
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Chaplain service
Inform GP
Organ/tissue donation
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Red flags
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Terminal phase (inappropriate to be sent home at this stage; may die in ambulance)
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References
