Checked: 04-04-2018 by
vicky.ryan Next Review: 13-09-2019
EOL End stage NS MOM
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Efforts are made to ensure the accuracy and agreement of these guidelines. However, we cannot guarantee this. This guidance does not override the individual responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or guardian or carer, in accordance with the mental capacity act, and informed by the summary of product characteristics of any drugs they are considering. Practitioners are required to perform their duties in accordance with the law and their regulators and nothing in this guidance should be interpreted in a way that would be inconsistent with compliance with those duties
Steroids’ wide range of actions means they have multiple uses in the palliation of patients with advanced illnesses, but also multiple potential adverse effects. As with any treatment, careful consideration must be given to the individual benefit versus burden of steroids in each patient.
In some instances, such as malignant spinal cord compression, superior vena cava obstruction (SVCO) and raised intracranial pressure, there is a reasonable body of evidence to support their use and to guide optimal dosing regimens etc. However, for most other indications, such as the palliation of fatigue, poor appetite and pain, the evidence is less clear. Consequently, prescribing practices may vary considerably between centres / settings.
Dexamethasone is frequently the steroid ‘of choice’ in palliative care since compared with prednisolone, it causes less fluid retention and the typical tablet burden for a given dose is less, despite carrying a potentially increased risk of proximal myopathy.
See the Bristol Palliative Care Collaborative Guidelines for the use of steroids in patients with cancer for specific information about corticosteroids, which is available here from St Peters Hospice Steroid Guidelines DCMarch 15.pdf
Hard copies of the Drug chart and patient information leaflet are available in GP Practices and with Community Nursing teams. The version attached below is provided as a last resort as these are not designed to be printed locally.
Terminal Phase The terminal phase is defined as the period when day to day deterioration, particularly of strength, appetite and awareness, is occurring.
It is notoriously difficult to predict when death will occur, as patients will readily confirm by telling you stories of what others have told them in response to the question, “How long have I got?” Professionals must avoid the trap of predicting or making a guess unless absolutely pushed to do so. At that point specifying exact times should be avoided since they are likely to be incorrect which may well leave patients and families confused and angry.
Talk in terms of “days”, or “weeks” e.g. “When we see someone deteriorating from week to week we are often talking in terms of weeks; when that deterioration is from day to day then we are usually talking in terms of days, but everyone is different.”
Adult Palliative Care Guidelines There are a number of different tools which may be used to estimate prognosis, usually incorporating a mixture of clinical signs and laboratory markers. Some tools have been studied in cancer patient populations.
However, bedside observations picked up during daily assessment of deterioration may yet turn out to be the most useful. Ten signs of neurological decline (decreased response to verbal stimuli, decreased response to visual stimuli, inability to close eyelids, drooping of the nasolabial fold, hyperextension of neck, grunting of the vocal cords, non-reactive pupils, Cheyne-Stokes breathing, respiration with mandibular movement, and death rattle) have high specificity for impending death (median onset 3 days prior to death, with few patients who did not die within 3 days observed to have these signs). In addition pulselessness of the radial artery, decreased urine output and gastrointestinal bleeding are commonly associated with impending death
The following information outlines the NICE approach to diagnosing the active dying phase:
Symptoms such as increasing fatigue and loss of appetite
Signs such as agitation, Cheyne–Stokes breathing, deterioration in level of consciousness, mottled skin, noisy respiratory secretions and progressive weight loss
Functional observations such as changes in communication, deteriorating mobility or performance status, or social withdrawal.
(Be aware that improvement in signs and symptoms or functional observations could indicate that the person may be stabilising or recovering.)
Any unexpected deterioration of a patient should prompt clinical review to assess and treat potentially reversible causes (e.g. infection, hypercalcaemia, acute kidney injury, medication changes or toxicity), in accordance with individual patient preferences. If this is done but improvement is not achieved or the deterioration is anticipated in the context of progressive and incurable disease then patient care should be guided by;
The Five Priorities for Care of the Dying Person:
RECOGNISE that the person is dying (see above)
COMMUNICATE – effectively with the dying person and those important to them.
INVOLVE – the dying person and those identified as important to them as much as they want to be in decision-making & care.
SUPPORT- psychological, spiritual and social needs for the dying person and those important to them as far as is possible.
PLAN & DO – create an individualised care plan that includes interventions for symptom control, support for eating and drinking as long as the dying person wishes to, addressing current and anticipated needs and frequent review.
Treatment that does not provide net benefit to the patient should be considered for withholding or withdrawing. Patients and those important to them should receive an explanation when healthcare professionals believe this to be the case and have opportunity to discuss the situation during the decision-making process. A doctor cannot be obliged to provide a treatment that they do not believe to be clinically indicated and competent adult patients cannot be obliged to accept treatment, including life prolonging treatment. If a patient who has now lost capacity for a treatment decision but previously made a valid advance decision to refuse treatment (ADRT) this must be respected and advance statements must also be given careful consideration in the decision-making process.
NICE guidelines also suggest the following:
Avoid undertaking investigations that are unlikely to affect care in the last few days of life unless there is a clinical need to do so, for example, when a blood count could guide the use of platelet transfusion to avoid catastrophic bleeding
Monitor for further changes in the person at least every 24 hours and update the person's care plan
Seek advice from colleagues with more experience of providing end of life care when there is a high level of uncertainty (for example, ambiguous or conflicting clinical signs or symptoms) about whether a person is entering the last days of life, may be stabilising or if there is potential for even temporary recovery
Healthcare professionals caring for adults at the end of life need to take into consideration the person's current mental capacity to communicate and actively participate in their end of life care
Establish the communication needs and expectations of people who may be entering their last days of life, taking into account:
if they would like a person important to them to be present when making decisions about their care
their current level of understanding that they may be nearing death
their cognitive status and if they have any specific speech, language or other communication needs
how much information they would like to have about their prognosis
any cultural, religious, social or spiritual needs or preferences.
Establish the level of involvement that the dying person wishes to have and is able to have in shared decision-making, and ensure that honesty and transparency are used when discussing the development and implementation of their care plan
Offer frequent care of the mouth and lips to the dying person, and include the management of dry mouth in their care plan, if needed.
Discuss the risks and benefits of clinically assisted hydration with the dying person and those important to them. Advise them that, for someone who is in the last days of life:
clinically assisted hydration may relieve distressing symptoms or signs related to dehydration, but may cause other problems
it is uncertain if giving clinically assisted hydration will prolong life or extend the dying process
it is uncertain if not giving clinically assisted hydration will hasten death.
Specific clinical prognostic indicators: Heart failure NYHA Stage III or IV, ejection fraction 20%, albumin <25,failure to respond to diuretics, worsening co-morbidities.
Significant inequity exists in terms of those with non-malignant diagnoses accessing specialist palliative care services.
Specific symptom control: Breathlessness
low dose opioid and/or benzodiazepine;
balance dose of diuretics against symptomatic hypotension and dehydration, good skin care, cautious hosiery compression of legs.
Furosemide can be given s/c or by CSCI when pulmonary oedema is a problem in the (terminal stages. Transdermal nitrates could also be considered.
general psychological, social and occupational therapy support
avoid tricyclic antidepressants as arrhythmogenic
emphasis on the use of oxygen, haloperidol and reducing strong opioid dose
Metoclopramine or domperidone should be used first line. Avoid cyclizine as may exacerbate heart failure
avoid NSAIDs and COX-2 inhibitors. Use steroids cautiously because of fluid retention.
There is a theoretical risk that absorption of drugs from transdermal patches may be reduced in patients with significant peripheral oedema, and therefore a non-oedematous area should be used in preference. In severe cardiac failure gut mucosal oedema may alter absorption of oral preparations.
Care of the dying
stop warfarin, statins etc; switch off implantable defibrillator (this should have been discussed at an early stage). Pacemakers will continue to function independently.
Specific clinical prognostic indicators: eGFR <15, decision not to dialyse, contemplating withdrawal from dialysis.
Specific symptom control: Pain
paracetamol, avoid NSAIDs unless end of life
Avoid morphine and diamorphine in renal failure. Fentanyl, alfentanil (s/c) or buprenorphine may be more appropriate
amitriptyline, gabapentin† or pregabalin†
metoclopramide, haloperidol, levomepromazine†
gabapentin†, clonazepam 0.5mg nocte
Care of the dying
be prepared for significant restlessness
† need dose reduction (see BNF).
Pruritus / Itch
good skin care is important
also see End of Life skin problems NSCCG
See individual pages for information on symptom control at the end of life
The end-stage is not easy to recognise but usually comprises:
Management In the terminal phase, simple measures are important:
constant draught from fan or open window
regular sips of water
In the terminal stages, the emphasis changes from active interventions to supportive and symptomatic measures. Drugs for palliating symptoms are often unavoidable. The oral route should be used where possible, but failing this, drugs may be given by the subcutaneous route. The ‘rattle’ associated with loose respiratory secretions, although probably not distressing to the patient, may be addressed by re-positioning, or by the use of hyoscine hydrobromide or glycopyrronium bromide - though the evidence for either is lacking.
As many patients approaching death with end-stage respiratory disease will have uncontrolled dyspnoea, appropriate sedation and opioid use should not be withheld because of an inappropriate fear of respiratory depression. (Indeed by reducing anxiety, respiration may actually become more efficient at this stage.) Options include benzodiazepines or opioids. The risks and benefits of potentially sedative drugs must be carefully considered and the justification clearly defined. Such decisions are often made by teams rather than individuals and it is appropriate that patients and families are fully involved in the decision making process.
Recurring infections may reach a point where antibiotics will predictably not confer benefit in either quality of life or survival. Exploring patient and family wishes about management options is helped by an understanding of the disease process: (using scores such as the CURB-65 score may be helpful). Using opportunities for sensitive advance care planning as an ongoing process rather than a finite task is beneficial
Assess current medication and discontinue non essential treatment Prescribe syringe driver medication if required Symptoms that are likely to arise in the coming hours/days should be anticipated and "as required" (PRN) medications prescribed for:
Nausea & Vomiting
Respiratory tract secretions (death rattle)
+ any other anticipated problems
Promote patient comfort
Consider urinary catheter
Pressure area care
The use of alternative routes of medication needs to be discussed, as the oral route will become more difficult
The intramuscular route for injections should be avoided as it is painful. Transdermal fentanyl patches should be avoided in the last days of life (due to the long titration period needed) unless already in situ, when the dose should be maintained but additional alternative routes used to address subsequent medication needs.
Excellence in nursing care is the mainstay of most care in the last days of life. This should include:
Prevention of new problems developing, e.g. the use of appropriate mattresses and prevention of bed sores
Treating specific symptoms such as a dry mouth
It should be explained that the intention is to use the minimum amount of medication required to maintain comfort, but that the balance between comfort and sedative side effects of analgesia and anxiolytics is particularly challenging in a patient who is dying. Standard practice in the UK is to discuss these issues with patients and those important to them, prescribing the minimum required medication (and titrating if needed) for the intention of symptom relief.
Physical examination should be kept to the minimum to avoid unnecessary discomfort or distress, but relevant limited examination should be considered to identify underlying causes of symptoms.
Any investigation at the end of life should have a clear and justifiable purpose such as excluding reversible conditions where treatment would make the patient more comfortable.
Discontinue inappropriate interventions.
Cancel appointments / investigations outstanding
Blood Tests including blood sugar
Identify and address patient's fears and anxieties (if appropriate)
Patient recognises that they are dying?
Identify and address relatives' fears and anxieties
Family recognise that patient is dying?
Goals of care discussed with relatives
Religious and cultural needs respected Family to be given information:
Who should the ward contact, and when (hospital)
Information on visiting, and facilities (hospital)
What to do when the patient dies
Alert on-call service/team
To avoid inappropriate resuscitation attempts particularly at home, check that this patient’s DNA CPR status is known or recorded for visiting health professionals.
If possible / appropriate, ensure that decisions regarding treatment escalation and resuscitation status have been documented on the BNSSG TEP form ahead of time and the relevant agencies are aware of these decisions.
If the diagnosis is mesothelioma, asbestosis or other industrial disease, remember to warn the family that the Coroner’s team will become involved after death.
Check whether cultural or religious rituals are expected to be adhered to after death. Provide information and/or contact numbers about procedures immediately after death.
Death certification has been a medical obligatory legal procedure since 1874 to provide proof of death and statistics of causes of death. A certificate must be issued by a medical practitioner who has been in attendance during the deceased’s last illness. It states the cause of death to the best of the doctor’s belief and knowledge.
The certificate should be filled in promptly to avoid further distress to the relatives and clear statements of the disease process should be used avoiding giving the mode of death as the only entry. Abbreviations should not be used. The death can then be formally registered and arrangements can be made for disposal of the body. The doctor is legally responsible for the delivery of the death certificate but a family member can act as the doctor’s agent, (which is usual practice). Deaths that cannot be readily certified as due to natural causes should be referred to the coroner.
There is a statutory duty to report any death to the coroner where:
Death within 24h of admission
Detention under mental health
Court case pending
In a hospice setting it is not uncommon for a patient to die with a pathological fracture or to die within a short time of arrival at the hospice. The coroner is very helpful in discussion of these cases.
From 7th November 2016 reports to the coroner should be done electronically
Contact details: To contact the Coroner’s office call 01275 461 920 and choose between the following options:-
• Option 1 – Coroners Officers Coroners officers, employed by the Avon & Somerset Police to deal with initial reports of death. Any GP, Doctor or Police reporting a death will need to contact this number. Fax 01275 461820. Open from 7:00am – 4:00pm.
You can also use the Contact form for feedback or enquiries. On call Coroners officer available from 4:00pm – 7:00am (Monday – Thursday). Friday 4:00pm all weekend until 7:00am Monday morning – Call out via Avon & Somerset police control room (101) and ask for the on-call Coroners Officer.
• Option 2 – Coroners administration The Coroners Admin team, employed by the Bristol City Council to deal with on-going inquests and distribution of forms to register offices & funeral directors. Any enquiry about the date/time of an inquest or any questions about being a witness, juror or interested party attending court. Fax – 01275 462749. Open from 7:00am – 4:00pm
Mortuary Tel. 01275 461927 – For any general enquiries. Fax. 01275 461928 If you need to arrange a viewing or an identification please contact the Coroners Officer in charge of the case on option 1 in the above section. Office opening hours from 7:30am – 12:00 (lunch 12-1pm) 1:00pm – 2:30pm