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
Key Differential Diagnosis
- Patient not in terminal phase of dying
Key Investigations
- No investigations
Key Treatments
- Stop invasive therapies eg dialysis, chemotherapy
- Stop any unnecessary investigations or treatments (drugs (incl AB), IV/SC fluids)
- Change other drugs to an appropriate route (eg SC)
- 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 - Ask senior to fill out DNR form
- Provide an appropriate environment (side room?)
Key Management Decision
- Send home (quickly) or admit
(ie environment patient wants for death)
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
Introduction
- 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)
Social change
- 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'
Epidemiology
- Approx 530,000 deaths in England pa
- 85% of deaths >65y
Causes
- 25% cancer
- 19% heart disease
- 14% respiratory disease
- 11% strokes and related disorders
- 31% other
Types
- Death at home or hospital
Symptoms
- 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
Key questions
- "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)
Signs (of terminal phase of dying)
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
Investigation
In general, do no investigations (or interventions) that would not improve symptoms
Blood/other
- In general, do no investigations (or interventions) that would not improve symptoms
Except, if would affect:- Prognosis, eg creatinine in CRF, for conservative care
- Symptoms, eg CXR, to differentiate pulmonary oedema from infection; if you would treat the oedema, to relieve symptoms
Differential diagnosis
- 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)
Treatment
Much of this section is derived from the Liverpool Care Pathway (Hospital), 2005 (pdf)
Discussion with patient and family
- 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'
Ten principles of treatment
- Stop invasive therapies (eg dialysis, chemotherapy)
- 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
- Change other drug treatments to an appropriate route (SC)
- 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)
- Ask senior to fill out DNR form; ie set realistic goals, in terms of treatment and resuscitation issues; discuss this issue with nursing staff
- Inform chaplain service (religious and spiritual care)
- 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
- Inform GP (even if keeping in hospital) + specialist team
- Discuss organ/tissue donation with patient + family, if they want it
- Provide information on what to do when death occurs and emergency contact numbers
Treatment
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
Prescribing issues
- There are compatibility issues with syringe drivers (eg cyclizine should not be made up in small volumes)
- Use palliativedeugs.com
Key management decision
- Send home (quickly) or admit
(ie environment patient wants for death)
Stop
Procedures
- Dialysis
Drugs
- Chemotherapy (after DW specialist)
- Any drug that is not of immediate benefit (ie, most drugs)
Admit?
- Usually
- But if send home, need to do it quickly, after discussion with patient + family; and inform GP, and Macmillan Team
Bed plan
- Medical admission ward
- Appropriate specialist ward (patient may have 'base ward')
Referrals
Medical
- Palliative care team
- Known specialist team
Other
- Macmillan nurse
- End-of-life facilitator, if you have one
The Rest
Maxim
- "There is such a thing as 'good death' "
Prognosis
- 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]
Discussion about prognosis
- 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:
- Identifying the person's own thoughts regarding their prognosis
- Explaining the difficulty of providing an accurate prognosis
- Providing a rough estimate only (eg days, weeks, months, years)
Who can be managed at home
- Any patient that wants it, with the agreement of the family
Follow-up (if send home)
- Macmillan Team
- GP
Don't forget
- Chaplain service
- Inform GP
- Organ/tissue donation
Red flags
- Terminal phase (inappropriate to be sent home at this stage; may die in ambulance)
