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End-of-life care 

End-of-life care
End-of-life care

Heather Baid

, Fiona Creed

, and Jessica Hargreaves

Page of

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date: 05 May 2021

End-of-life issues in critical care

So far the chapters of this book have focused on active treatment and the prolongation of life in critical care. However, it is important to consider the significant mortality rate in critical care, as clearly not all critically ill patients will survive.

Death in critical care can be very complex and difficult for patients, families, and staff alike. It may happen very suddenly due to acute deterioration, or it may occur as a result of slow deterioration, failure to respond to treatments, or the decision to withdraw treatment.

Irrespective of this, it is important that patients facing death in critical care areas and their families should be treated with sensitivity, empathy, and compassion, as these are essential foundations for effective end-of-life care.

End-of-life care has received much criticism recently, and complaints about lack of individuality, compassion, and caring have led to a review of end-of-life care provision. In particular the Liverpool Care Pathway (LCP) has been criticized, largely due to inconsistent and incorrect interpretation of the framework. This has led to a perceived lack of public support for the pathway recommendations, and a recent review1 highlighted the need to change the focus of end-of-life care to personalized care planning to ensure that patients’ deaths are individualized.

Alongside this, critical care nurses also have to deal with a number of other complexities associated with end-of-life care. These include:

  • the impetus to withdraw treatment

  • transition of care from acute to palliative

  • uncertainty in decision making

  • support of conscious and unconscious patients

  • support of families, relatives, and friends.


1 Neuberger J et al. More Care, Less Pathway: a review of the Liverpool Care Pathway. Department of Health: London, 2013.Find this resource:

Recognition of end of life

Recognition that a patient has reached the end of life can be a challenging concept in critical care settings. There are a number of objective criteria that may enhance the ability to predict the trajectory of severe illness, such as APACHE scoring and organ function or failure modelling. However, these tools are not always reliable.2

Some of the issues faced by the critical care team include:

  • the complexity of the patient’s condition

  • unexpected or unpredictable death

  • difficulty in recognizing when further intervention is futile

  • difficulty in decision making

  • lack of agreement:

    • between disciplines

    • within disciplines.

Although ultimately the responsibility with regard to decision making rests with the consultant in charge of the patient’s care, the importance of a multidisciplinary approach to end-of-life issues cannot be over-emphasized.


2 Coombs MA et al. Challenges in transition from intervention to end of life care in intensive care: a qualitative study. International Journal of Nursing Studies 2012; 49: 519–27.Find this resource:

Decision making

In an attempt to improve end-of-life care, the General Medical Council (GMC) has issued medical staff with detailed guidelines relating to end-of-life decision making.3

These emphasize the need to be clear about exactly what decisions have to be made about treatment. They also provide guidance to facilitate decision making both in cases where the patient is conscious and has mental capacity and in cases where the patient is unconscious or is not deemed to have mental capacity.

The GMC suggests that in cases where the patient is deemed to have mental capacity:

  • staff should keep the patient fully informed of their progress in language and terms that they can understand

  • the patient should always be involved in the decision-making process, and should be provided with sufficient information to allow them to make an informed decision about the choices that relate to end-of-life care

  • the patient can, if they choose, nominate another adult to act as an advocate for them should they be unwilling or unable to make a decision.

For patients who are not deemed to have mental capacity, decisions should be grounded in ethical principles. However, staff can review a number of issues that may enable decision making to occur. This includes reviewing whether:

  • the patient has made an advance care plan

  • the patient has previously appointed an advocate or granted a family member power of attorney.

If neither of these are available, decisions are normally based on bioethical principles (see Table 19.1), and should include discussion with:

  • the medical team

  • the nursing team

  • allied health professionals

  • the family, relatives, and friends.

Table 19.1 Guiding bioethical principles


An obligation not to harm another person


An obligation to ensure that any care given is of benefit to the patient and promotes the welfare of the individual

Respect for autonomy

An obligation to respect the choices made by others if they are capable of self-determination


An obligation to be fair and equitable in the decisions made and distribution of care


An obligation to be truthful


An obligation to ensure that commitments made to the patient are kept

It may also be helpful to use a decision-making model, such as the Morton and Fontaine model4 (see Box 19.1). Decisions may relate to such issues as:

  • ceilings of treatment

  • withholding treatment

  • withdrawal of treatment.


3 General Medical Council. Treatment and Care Towards the End of Life: good practice in decision making. General Medical Council: London, 2010.Find this resource:

4 Morton PG and Fontaine DK. Essentials of Critical Care Nursing: a holistic approach. Lippincott, Williams & Wilkins: Philadelphia, PA, 2012.Find this resource:

Advance care planning

Some patients who are admitted to critical care may have made advance decisions about their own care plan. This may be likely if the patient has a chronic condition or knows that their condition may deteriorate or become life-threatening. The Gold Standards Framework suggests that this enables patients to make choices in anticipation of deterioration in their condition.

Essentially advance care planning covers two main aspects:

  • advance statement

  • advance decisions.

Advance statement

An advance statement provides an indication of what the patient would like to happen to them. These statements are sometimes referred to as advance directives. It is important to note that such statements are not legally binding. However, they may be helpful in allowing critical care teams to understand the patient’s preference for care, in the event that the patient is not able to make their preferences known.

Advance decision

An advance decision is a document that clarifies refusal of treatment that the patient does not wish to receive. For example, a patient with COPD may request that they receive non-invasive ventilation, but refuse invasive ventilation in the event of respiratory failure.

These decisions can be legally binding if they are correctly formulated. Correct formulation involves assessment of mental capacity to ensure that the patient was mentally able to make that decision at the time it was taken (End-of-life care Advance decisions may help to strengthen decision making, especially if someone has been previously granted lasting power of attorney.

Care of the dying patient

Recent reviews have highlighted the need for individualized care planning for patients who are dying. Although the emphasis remains on individualized care planning, there will be some commonalities in care for patients at the end of life.

The World Health Organization emphasizes the need for appropriate planning, and highlights the need to provide appropriate symptom control.5 Neuberger and colleagues have highlighted the need for compassionate and patient-centred care.6 This will of course include appropriate assessment of physical, psychological, and spiritual needs.

From a physical perspective this may encompass assessment and management of:

  • effective and appropriate pain control

  • promotion of comfort

  • nausea and vomiting

  • breathlessness

  • secretion control

  • incontinence and urinary retention

  • restlessness and confusion

  • hydration

  • nutrition

  • personal care needs.

From a psychological perspective this may encompass assessment and management of:

  • stress

  • anxiety

  • fear

  • the appropriate environment

  • the desire and ability to discharge the patient home

  • discontinuation of unnecessary interventions.

From a spiritual perspective this may encompass assessment and management of:

  • spiritual needs

  • spiritual beliefs

  • the support systems available

  • religious beliefs

  • religious perspectives.


5 World Health Organization. WHO Definition of Palliative Care. End-of-life

6 Neuberger J et al. More Care, Less Pathway: a review of the Liverpool Care Pathway. Department of Health: London, 2013.Find this resource:

Care of the relatives, family, and friends

The need for appropriate support for the relatives, family, and friends of patients at the end of life is a significant consideration. NICE has highlighted the need to ensure that relatives are offered:

  • comprehensive holistic assessments in response to their changing needs and preferences

  • holistic support appropriate to their current needs and preferences.7

NICE suggests that consideration is given to assessment and management of individualized needs.7 This would include consideration of each individual’s:

  • physical needs

  • psychological needs

  • social needs

  • spiritual needs

  • cultural needs.

Acknowledgement of the importance of effective and clear communication with family members and assessment of individualized needs helps to promote effective family-centred care. Rocker and colleagues identified a number of positive influences on families during this difficult time.8 Positive care factors included:

  • being treated with respect and compassion

  • being provided with sufficient information

  • discussing sensitive issues such as withdrawal of treatment in a sensitive manner

  • having conversations with members of the multidisciplinary team in a quiet place

  • ensuring discussion about the patient’s preferences

  • feeling able to voice their concerns and worries

  • feeling that their relative was comfortable and not suffering

  • being offered pastoral and psychological support.

Issues that relatives found caused them most anxiety included:

  • being given incomplete or conflicting information

  • guilt about decisions made

  • the nature of their role in the decision-making process.


7 National Institute for Health and Care Excellence (NICE). End of Life Care for Adults. QS13. NICE: London, 2011. End-of-life this resource:

8 Rocker G et al. End of Life Care in the ICU: from advanced disease to bereavement. Oxford University Press: Oxford, 2010.Find this resource:

Special end-of-life considerations: brainstem death testing

Brainstem death testing is normally associated with patients who have a serious acquired brain injury (e.g. head injury, subarachnoid haemorrhage, stroke). It can also be seen in patients with global stroke following prolonged hypoxia that has led to significant cerebral ischaemia and raised intracranial pressure.

In the UK, brainstem death (BSD) is considered to be a state in which the individual has simultaneously and irreversibly lost the:

  • capacity for consciousness

  • capacity to breath unassisted.

In the UK, confirmation of brain death correlates with confirmation of brainstem death, as the assessment is based on the principle that if the brainstem is dead this will lead to irreversible loss of consciousness and ability to breathe spontaneously.

It is important to note that some countries, such as North America and Australia, test for brain death, and this may require other investigations to be performed.

The number of patients who meet the criteria for brainstem death testing is decreasing. There are a number of factors that need to be taken into consideration before brainstem death testing can occur, and guidance is available relating to:

  • staff who are able to undertake brainstem death testing

  • criteria that must be met before such testing can occur

  • the brainstem death tests that must be performed.

Staff involved in brainstem death testing

The guidance specifies that testing must be undertaken by two medical professionals. Both must have been registered with the GMC for at least 5 years, and one must be at consultant grade.

Criteria that must be met before testing

It is important to eliminate any reversible cause of loss of consciousness. Therefore consideration must be given to:

  • the length of time since the last administration of sedative, muscle relaxant, or opiate analgesia

  • the pharmacological half-life of the drug (for barbiturate-infused drugs this can be of the order of days)

  • metabolic disorders

  • electrolyte imbalances

  • body temperature.

Brainstem death tests

The brainstem death tests aim to test the function of the brainstem. If any aspect of the test is positive, the patient is not brainstem dead. If all aspects of the first brainstem death test are negative, the patient is brainstem dead, but it is normal practice for a second medical doctor to repeat the tests.

Time of death is recorded as the time of completion of the first set of tests (this can be confusing for the family).

The brainstem death tests are listed in Table 19.2, and the procedure for an apnoea test is described in Box 19.2.

Table 19.2 Brainstem death tests


Area/cranial nerve tested

The pupils are fixed and do not react to an intense light source

Mesencephalon and cranial nerves II and III

There is no corneal reflex when the cornea is irritated with a cotton wool tip

Pons cranial nerves V and VII

The tympanic membrane is checked to ensure that it is intact. Ice-cold water is injected into each external auditory meatus. No eye movement is noted during instillation of iced water

Pons cranial nerves VII, II, IV, and VI

No motor response is noted by adequate stimulation (e.g. supraorbital pressure). Care must be taken to use a central painful source, as peripheral sources may elicit a spinal cord reflex or may not work in the presence of spinal cord injury

There is no cough reflex to bronchial stimulation with a suction catheter

Medulla, cranial nerves IX and X

The equipment required for brainstem death testing includes the following:

  • ophthalmoscope

  • light source for pupil responses

  • otoscope

  • ice and kidney dish to collect iced water

  • 50 mL syringe and quill

  • gauze and cotton wool

  • endotracheal catheter

  • blood gas syringes (several).

In summary, a patient is considered to be brainstem dead if the tests identify that:

  • both pupils are fixed and do not react to light

  • there is no corneal reflex

  • the oculo-vestibular reflex is absent

  • there is no motor response to central pain sources

  • there is no cough reflex

  • there is no evidence of spontaneous ventilation.

When the brainstem death tests are complete the team will then discuss with the family:

  • the option of organ donation if this is applicable (it is useful to consider early involvement of donor nurse specialists)

  • the option of withdrawal of life-sustaining treatment.

Special end-of-life considerations: organ donation (heart-beating donation)

For patients who meet the criteria for brainstem death, heart-beating donation is an option for the patient’s family to consider. This type of donation refers to the removal of organs, eyes, and tissue for the purpose of transplantation. The patient is taken to surgery and some organs are removed while the heart is still beating.

If the patient is a suitable candidate for organ donation it is usual practice to contact the nurse specialist from the organ donation team. It is preferable for contact to be made prior to the completion of brainstem death tests, but if this is not possible then it should occur as soon as the tests have confirmed brainstem death. Early referral to the team enables:

  • assessment of the suitability of the candidate

  • support of the family

  • checking of the organ donor register.

The donor nurse specialist’s role is to:

  • make a detailed assessment of the potential for donation

  • identify whether the patient is a suitable candidate for donation

  • support the family

  • stabilize the patient and prepare for donation

  • coordinate the arrival of the transplant team

  • provide aftercare for the patient.

Absolute contraindications for donation include:

  • known or suspected Creutzfeldt-Jakob disease (CJD)

  • known HIV disease.

Other contraindications may include:

  • disseminated malignancy

  • age > 70 years

  • known active TB

  • untreated bacterial sepsis.

It is usual practice for the doctor to contact the coroner (in England, Wales, and Northern Ireland)) or the Procurator Fiscal (in Scotland).

Special end-of-life considerations: organ donation (non-heart-beating donation)

Most patients who die in critical care units may be eligible for non-heart-beating donation or tissue donation, and this is an important choice to be able to offer to the family.

Non-heart-beating donation

This can normally be considered if the patient’s treatment is being withdrawn. The contraindications and absolute contraindications are the same as for heart-beating donation, but the process is slightly different, although it will still be coordinated by the nurse specialist for organ donation.

Because of the need to remove the organs as soon after certification of death as possible, the donor team needs to be ready in theatre before treatment is withdrawn.

It is usual for preparations for donation to be made first, and then the patient’s treatment is withdrawn. The patient is observed for 5 min after cessation of cardiorespiratory function, and then death is certified by senior medical staff. The patient is immediately taken to theatre and the organs are retrieved by the team. The patient’s family are able to see the patient in the initial period after death and then later, supported by the nurse specialist, following donation.

The nurse specialist for organ donation has a pivotal role in:

  • organization

  • coordination of the team

  • support of the family before and after donation

  • aftercare of the patient.

Tissue donation

Most patients who die in an intensive care unit can also be considered for tissue donation. This again involves the role of the nurse specialist for donation, but tissues are taken in the period after death in the mortuary.

The contraindications to tissue donation are listed in Box 19.3. It is necessary to liaise with the nurse specialist not only to coordinate the tissue donation after death, but also to support the family while the decision is being made.

Relatives are required to sign a lack of objection form which will also indicate which tissues may be taken. These may include:

  • corneas

  • heart valves

  • bone

  • skin.

Age restriction may occur with regard to donation of some tissues, and the medical staff will also need to obtain permission from the coroner or the Procurator Fiscal.