Care in the Last Days of Life 1

Care in the Last Days of Life

Recognising The Dying Person
Recognising the deteriorating patient is difficult, not only due to the
challenges of prognostication but also because of professional and public
‘death anxiety’ and fears of destroying hope or causing unnecessary distress.1 These problems can be
compounded by models of care that are unduly disease focused rather than individualised to provide
successful care when cure is no longer likely or possible.
The 2014 National Care of the Dying Audit found that 45% of patients in hospital were recorded as
having been assessed as capable of participating in discussions regarding their plan of care at the end
of life. Of these patients, discussions between health professionals and patients were reportedly
undertaken in only 28% of cases.2 Many UK healthcare providers are implementing one or more of
five key enablers (Advance Care Planning (ACP), Electronic Palliative Care Co-ordination Systems
(EPaCSS), AMBER Care Bundle, Rapid Discharge and Care in the last days of life) in strategies to
improve that care of dying persons whether in hospital or at home3 (Evidence level V).
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:1
1. RECOGNISE that the person is dying
2. COMMUNICATE – effectively with the dying person and those important to them.
3. INVOLVE – the dying person and those identified as important to them as much as they want to
be in decision-making & care.
4. SUPPORT- psychological, spiritual and social needs for the dying person and those important to
them as far as is possible.
5. 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.4

Prognoscaon
Research has shown that senior medical staff are not necessarily the best predictors of approaching
death. Nurses, junior medical staff and care assistants may predict survival more accurately,
although all professional groups demonstrate significant inaccuracies in their predictions
(qualitative and cohort studies).5,6
Specifying precise timeframes that prove to be either too short or too long can have adverse impact
on the psychological well-being of patients and those important to them. It is usually helpful to

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explain that making a prognosis for an individual person is very difficult but offer a broad framework
for the person asking to reflect with you on the current speed of deterioration, for example, using the
common practice of discussing whether someone is deteriorating over months, weeks, days or hours
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.”

The last days of life are defined as the period when day to day deterioration, particularly of strength,
appetite and awareness, is occurring. This is also sometimes referred to as the time when the patient
is ‘actively dying’

Signs And Symptoms Of Approaching Death

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.
For example:
Palliative Prognostic score (PaP) – this is widely used but very reliant on subjective clinicians’
predictions – a potential issue if the clinician is uncertain. PaP has been demonstrated to give
reasonable accuracy in broad categories of prognostic estimates (good/intermediate/poor) and
there is evidence of its prognostic estimates’ validity in multiple settings.
Palliative Prognostic Index (PPI) – this has a high level of accuracy for patients with short survival
prognosis but does not identify all in this group. It incorporates the Palliative Performance Scale
(PPS) which has been demonstrated to have prognostic significance but was not designed to be
predictive.
Feliu prognostic nomogram – this is not based on subjective clinician opinion although it still
contains an element of judgement. Studies have produced good evaluation data in which it
compares favourably to PaP.
Prognosis in Palliative care Study (PiPS) predictor models – This tool is subject to ongoing
research but has already been shown to be more accurate than doctor/nurse estimates.7

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 (various validation studies,
Evidence level 3).8,9
Signs and symptoms of dying10
Funconal and physical ability • Fague
• Increasing weakness and frailty
• Worsening mobility
• Progressive physical decline; spending most of the me in bed
• Inability to move around in bed
• Inability to li head off pillow
• Requiring increased assistance with day to day care

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Psychological & Spiritual • Concern for those being le behind

Nutrion & Hydraon
Loss of ability to swallow
Bowels & Bladder
Cardiovascular changes
Increasing physical symptoms
Respiratory changes
Decreasing level of consciousness • Reduced cognion
• Fear or anxiety of dying process, abandonment, the unknown
• Nearing death awareness
• Social withdrawal
• Search for meaning and purpose
• New self beyond personal loss
• Increased focus on spiritual
• Reduced fluid and food intake
• Poor appete with lile or no interest in eang or drinking
• Weight loss (muscle and fat)
• Anorexia
• Increased risk of aspiraon
• Increased coughing
• Difficulty swallowing
• Dehydraon, dry mucous membranes
• Dysphagia
• Coughing, choking
• Loss of gag reflex
• Build-up of oral and tracheal secreons
• Gurgling
• Urine may become darker
• Urine inconnence
• Faecal inconnence
• Reducon (oliguria) or absence (anuria) of urine
• Urine retenon
• Tachycardia, hypertension
• Moling of the skin (a purple-blue-red blotchy/lacy paern)
• Abnormal blue discoloraon and cooler temperature of the skin, parcular fingers, toes and
limbs (peripheral cyanosis)
• Swelling of ssues in the lower limbs- accumulaon of fluids (peripheral oedema)
• Non-verbal signs and symptoms of discomfort e.g. moaning, restlessness, grimacing,
frowning, repeve movements, tension in forehead
• Pain
• Nausea or voming
• Increased risk of skin breakdown and pressure ulcers
• Redness over bony prominences
• Respiratory symptoms
• Restlessness or agitaon
• Shortness of breath
• Respiratory secreons, noisy, raling breathing (‘death rale’)
• Cheyne-Stoke breathing paern – a shallow breathing followed by temporary pauses in
breathing
• Gasping, laboured breathing (agonal)
• Apnoea
• Increasing drowsiness and difficulty awakening
• Terminal agitaon
• Unresponsive to voice or touch

Team Goals For Last 24 Hours

Ensure the patient’s comfort physically, emotionally and spiritually.
Make the end of life peaceful and dignified.
By care and support given to the dying patient and those important to them, make the memory of
the dying process as positive as possible.

Resuscitaon
Any patient for whom recovery is uncertain should have their resuscitation status considered,
discussed and documented. “Do Not Attempt Cardio Pulmonary Resuscitation” (DNACPR) decisions
must be discussed with patients (it is a legal requirement to inform patients who have capacity to

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take part in discussions that resuscitation status is being considered) and best practice to also inform
those important to the patient (unless the patient refuses consent to share this information) prior to
being documented. If a patient does not have the capacity to discuss this decision their nominated
next of kin should be involved.
If the patient has an implantable cardioverter defibrillator (ICD) it should be deactivated (if this has
not already happened). As ventricular dysfunction worsens, ventricular arrhythmias (resulting in ICD
shocks) are more likely to occur causing discomfort to the patient, at a time when comfort, rather
than prolonging life, has been identified as the goal of care. Furthermore, ICD’s have no proven
survival benefit in patients with end stage heart failure.11 Ideally, ICD deactivation should be pre-
planned and carried out by a cardiac technician. If an ICD needs to be deactivated urgently / out of
hours, this can be done by placing a special magnet over the bump of the ICD and taping in place.12
See Cardiopulmonary Resuscitation for more detailed discussion on DNACPR

Personal Preferences
Dying is a very personal event for each individual dying person. Helping to explore a patient’s wishes
about death and dying should be considered part of advance care planning prior to the last days of
life. Fulfilling (where possible) wishes that the patient has expressed about matters such as place of
death, can bring great comfort to those bereaved. Different religious and cultural groupings have
different approaches to the dying process and there are individual variations within particular
groups. It is important to be sensitive to cultural and religious beliefs.
Receiving spiritual support from members of the clinical team has been associated with better
quality of life close to death.13 Patients receiving palliative care have been found to support staff who
introduce questions about spiritual needs, and expect opportunities to engage in spiritual care
discussions. These patients defined the ‘right’ attitude for spiritual care delivery as being non-
judgemental, providing integrated care and showing interest in individuals.14 While for some
spirituality is expressed through organized religion, for others it may relate to human relationships,
secular ethical values etc (Evidence level 5).15
Referral to Specialist Palliave Care services is parcularly appropriate when
One or more distressing symptoms prove difficult to control
There is severe emotional distress associated with the patient’s condition
There are dependent children and/or elderly vulnerable relatives or other complex social issues

Collaborave Mulprofessional Approach

Effective care at the end of life has been shown to require a team approach.16 The focus of assessment
in the last days of life is to ascertain what the patient perceives to be his or her problems, and to try
and find out which concerns are a priority to be addressed. Collateral histories from others may be
helpful (although the accuracy of proxy reporting is variable).17
Effective multiprofessional working depends on:
Recognising the centrality of patient and family needs
Effective communication
Clear understanding and respect for the value, importance and role of other professionals
Early referral to specialist palliative services if needed

Addressing Needs And Symptoms

Current symptoms should be addressed immediately. Symptoms that are likely to arise in the
coming hours / days should be anticipated and “as required” (PRN) medications prescribed
accordingly (see below re essential medications). Physical examination should be kept to the
minimum to avoid unnecessary discomfort or distress, but relevant limited examination should be

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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.
The use of alternative routes of medication needs to be discussed, as the oral route will become
more difficult
The treatment plan should define clearly what should be done in the event of a symptom arising
or worsening
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. In many instances, a syringe driver containing appropriate
medication given subcutaneously is used so that adjustments can be made more finely in
accordance with the patient’s changing state.

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
Anticipating the probable needs of the patient so that immediate response can be made when the
time comes

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.
The use of “palliative sedation”, i.e. “the monitored use of medications intended to induce a state of
decreased or absent awareness” remains controversial18,19 and practice varies worldwide.
“Palliative sedation” is sometimes incorrectly used to describe any instance where sedative
medications are used to relieve symptoms at the end of life. Families may require reassurance about
18,19
the rationale and manner of medication use.

References
1. Leadership Alliance for the Care of Dying People. One Chance to get it right: improving people’s experience of care in the
last few days and hours of life. 2014
2. Royal College of Physicians and Marie Curie. National Care of Dying Audit. 2014
3. National End of Life Care Programme. The route to success ‘how to’ guide. 2012. Available from:
www.nhsiq.nhs.uk/endoflifecare (accessed 21 June 2015)
4. General Medical Council. Treatment and care towards the end of life. 2010. Available from:
www.gmc-uk.org/guidance/ethical_guidance/end_of_life_contents.asp (accessed 21 June 2015)
5. Oxenham D, Cornbleet MA. Accuracy of prediction of survival by different professional groups in a hospice. Palliat
Med 1998;12(2):117-8
6. Twomey F, O'Leary N, O'Brien T. Prediction of patient survival by healthcare professionals in a specialist palliative care
inpatient unit: a prospective study. Am J Hosp Palliat Care 2008;25(2):139-45
7. Stone P, Lund S. Predicting survival in advanced cancer patients. Eur J Palliat Care 2013;20:58-61
8. Hui D, dos Santos R, Chisholm G, et al. Clinical signs of impending death in cancer patients. Oncologist
2014;19(6):681-7
9. Hui D, Dos Santos R, Chisholm G, et al. Bedside clinical signs associated with impending death in patients with
advanced cancer: preliminary findings of a prospective, longitudinal cohort study. Cancer 2015;121(6):960-7
10. Emanuel LL, Hauser JM, Bailey FA, et al. eds. Education in Palliative and End-of-life Care for Veterans. Chicago, IL, and
Washington, DC: EPEC for Veterans, 2012
11. Pettit SJ, Browne S, Hogg KJ, et al. ICDs in end-stage heart failure. (review) BMJ Support Palliat Care 2012;2(2):94-7
12. NHS South London Cardiovascular and Stroke Network. Guidelines for deactivating implantable cardioverter

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defibrillators (ICDs) in people nearing the end of life. 2013. Available from: www.slcsn.nhs.uk (accessed 13 Oct 2016)
13. Balboni TA, Paulk ME, Balboni MJ, et al. Provision of spiritual care to patients with advanced cancer: associations with
medical care and quality of life near death. (clinical trial) J Clin Oncol 2010;28(3):445-52
14. Yardley SJ, Walshe CE, Parr A. Improving training in spiritual care: a qualitative study exploring patient perceptions of
professional educational requirements. Palliat Med 2009;23(7):601-7
15. National End of Life Care Programme. Draft Spiritual Support and Bereavement Care Quality Markers and Measures for
End of Life Care. 2011
16. Jones RVH. Teams and terminal cancer care at home: do patients and carers benefit? Journal of Interprofessional Care
1993;7(3):239-244
17. Kutner JS, Bryant LL, Beaty BL, et al. Symptom distress and quality-of-life assessment at the end of life: the role of
proxy response. (multicenter study) J Pain Symptom Manage 2006;32(4):300-10
18. Gurschick L, Mayer DK, Hanson LC. Palliative Sedation: An Analysis of International Guidelines and Position
Statements. Am J Hosp Palliat Care 2015;32(6):660-71
19. Cherny NI, Radbruch L, Board of the European Association for Palliative Care. European Association for Palliative Care
(EAPC) recommended framework for the use of sedation in palliative care. Palliat Med 2009;23(7):581-93

Printed on Sun 11 Dec 2022 21:28:58 GMT

Palliative Care Guidelines Plus 2022-12-11