Palliative care - general issues: Scenario: Terminal phase

• Attempt to estimate the person's prognosis and discuss this with them, if appropriate.
  • Estimating the prognosis helps in the planning of appropriate treatment and care — if prognosis is not discussed, or predictions are inaccurate, people may make inappropriate treatment decisions, or inadequately prepare for death.
  • The Prognostic Indicator Guidelines (pdf) can be used to estimate prognosis.
    • It is part of the Gold Standards Framework, which aims to optimize the care of people nearing the end of life who are looked after by primary care teams in the community. It includes the question 'Would you be surprised if this patient were to die in the next 6 to 12 months?' to try to identify people nearing the end of their lives.
  • Some people may request 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 (for example days, weeks, months, or years).
• Risks associated with assessing the prognosis include:
  • Overestimating the length of survival — families may feel 'robbed' of time with their relative.
  • Underestimating the length of survival — the person and their family may question the credibility of the source of information.
• It is therefore important to emphasize that an estimate of the person's prognosis is not a guarantee of what will happen.

• It can often be difficult to be certain that a person is dying, but it is essential to recognize the signs of dying in order to appropriately care for people at the end of life.
• The terminal phase may last hours to several days.
• People are likely to be in the terminal phase of their illness when they:
  • Deteriorate day by day or more rapidly.
  • Have a reduced mobility and become progressively weak and fatigued without an apparent cause (for example hypercalcaemia).
  • Express a realization that they are dying.
  • Have reduced cognition, ability to communicate and social withdrawal.
  • Have a deterioration in level of consciousness.
  • Are delirious, characterized by increased restlessness, confusion, and agitation.
  • Are bed-bound.
  • Take little food or fluid, and have difficulty taking oral medication.
  • Are peripherally cyanosed, have mottled skin and are cold to the touch.
  • Have apnoea (whether awake or asleep) or an altered breathing pattern, such as Cheyne-Stokes breathing.

• The terminal phase requires a careful discussion with the person and their family and/or carers. It is important that healthcare professionals caring for adults at the end of life take into consideration the person's current mental capacity to communicate and actively participate in their end of life care.
• Healthcare professionals need to establish the communication needs and expectations of people who may be entering their last days of life, these include;
  • A consideration of whether the person would like someone important to them to be present when making decisions about their care.
  • The person's current level of understanding that they may be nearing death.
  • The person's cognitive status and if they have any specific speech, language or other communication needs.
  • How much information the person would like to have about their prognosis.
  • A sensitivity to the dying person’s cultural, religious, social or spiritual needs or preferences.
• When it is clear a person has entered the terminal phase of their illness healthcare professionals should provide the dying person, and those important to them, with;
  • Accurate information about their prognosis (unless they do not wish to be informed), explaining any uncertainty and how this will be managed, but avoiding false optimism.
  • An opportunity to talk about any fears and anxieties, and to ask questions about their care in the last days of life.
  • Information about how to contact members of their care team.
  • Opportunities for further discussion with a member of their care team.
  • An individualised care plan.
• Discuss whether the dying person has an advance statement or has stated preferences about their care in the last days of life (including any anticipatory prescribing decisions, or an advance decision to refuse treatment, or details of any legal lasting power of attorney for health and welfare).
• Determine whether the dying person has understood and can retain the information given about their prognosis.
• Communicate the dying person's prognosis with other members of the multi-professional care team (including out of hours, on-call services), and ensure that this is documented in the dying person's care plan.

Individualised Care Plan

• An individualised care plan should include the dying person's:
  • Realistic personal goals (including treatment and resuscitation) and wishes.
  • Current and anticipated care needs including preferences for symptom management, any identified needs for care after death, and any identified resource needs.
  • Preferred care setting.
• Continue to explore the understanding and wishes of the dying person and those important to them, and update the care plan as needed. Recognise that the dying person's ability and desire to be involved in making decisions about their care may change as their condition deteriorates or as they accept their prognosis.
• While it is normally possible and desirable to meet the wishes of a dying person, when this is not possible explain the reason why to the dying person and those important to them.
• Ensure that shared decision-making can be supported by experienced staff. Seek further specialist advice if additional support is needed.

Management of end of life and symptom control

• The overriding principle of end of life care is to manage commonly experienced symptoms to maintain the person's comfort and dignity without causing unacceptable side effects.
• This approach includes:
  • Maintaining hydration.
  • Appropriate pharmacological interventions including stopping any unnecessary drug treatments and continuing other drug treatments by an appropriate route.
  • Anticipatory prescribing, for example the use of medications including cyclizine, diamorphine, hyoscine hydrobromide, and midazolam, so that new or developing symptoms can be treated without delay.
  • Managing specific common symptoms in end of life care, including oral symptoms, breathlessness, pain, nausea and vomiting, anxiety, agitation and delirium, and noisy respiratory secretions. For more information see CKS topics on Palliative care - constipation, Palliative care - cough, Palliative care - dyspnoea , Palliative care - malignant skin ulcer, Palliative care - nausea and vomiting, Palliative care - oral, Palliative cancer care - pain , Palliative care - secretions.

Managing hydration

• Support the dying person to drink if they wish to and are able to.
  • Check for any difficulties, such as swallowing problems or risk of aspiration.
  • Discuss the risks and benefits of continuing to drink, with the dying person, and those involved in the dying person's care.
• Ensure that healthcare professionals and carers involved in end of life care offer frequent care of the mouth and lips to the dying person including:
  • Frequent sips of fluid.
  • Providing any necessary drinking aids.
  • Help with cleaning their teeth or dentures.
• Assess, preferably daily, the dying person's hydration status, and review the possible need for starting clinically assisted hydration, respecting the person's wishes and preferences. Clinically assisted hydration is provided by intravenous or subcutaneous infusion of fluids. Providing this hydration by drip infusion may provide symptom relief, or prolong or improve the quality of the patient’s life, but may present additional problems.
• For someone who is in the last days of life, advise the person and carer that:
  • Clinically assisted hydration may relieve distressing symptoms or signs related to dehydration but may cause other problems such as fluid overload.
  • It is uncertain if giving clinically assisted hydration will prolong life or extend the dying process.
  • It is uncertain that if clinically assisted hydration is not given, death will hasten.
• Ensure that any concerns raised by the dying person or those important to them are addressed before starting clinically assisted hydration.
• When considering clinically assisted hydration for a dying person, use an individualised approach and take into account:
  • Whether they have expressed a preference for or against clinically assisted hydration, or have any cultural, spiritual or religious beliefs that might affect this documented in an advance statement or an advance decision to refuse treatment.
  • Their level of consciousness.
  • Any swallowing difficulties.
  • Their level of thirst.
  • The risk of pulmonary oedema or other complications of fluid overload.
  • Whether even temporary recovery is possible.
• Consider a therapeutic trial of clinically assisted hydration if the person has distressing symptoms or signs that could be associated with dehydration, such as thirst or delirium, and oral hydration is inadequate.
• For people being started on clinically assisted hydration:
  • Monitor at least every 12 hours for changes in the symptoms or signs of dehydration, and for any evidence of benefit or harm.
  • Continue with clinically assisted hydration, if there are signs of clinical benefit.
  • Reduce or stop clinically assisted hydration, if there are signs of possible harm to the dying person; such as fluid overload, or if they no longer want it.
• For people already dependent on clinically assisted hydration before the last days of life:
  • Review the risks and benefits of continuing clinically assisted hydration with the person and those important to them.
  • Consider whether to continue, reduce or stop clinically assisted hydration as the person nears death.

Pharmacological interventions

• When it is recognised that a person may be entering the last days of life, review their current medicines. After discussion and agreement with the dying person and those important to them (as appropriate), stop any previously prescribed medicines that are not providing symptomatic benefit or that may cause harm.
• When considering prescribing for symptom control, health professional should take into account:
  • Place of care and the time it would take to obtain medicines.
  • The likely cause(s) of any symptoms.
  • The dying person's individual preferences.
  • The benefits and harms of prescribed medicine.
  • Any risks of the medicine that could affect prescribing decisions including drug interactions and relevant past medical history.
  • The most effective route for administering medicines tailored to the dying person's condition, including their ability to swallow safely and personal preferences.
• Consider the subcutaneous route for administering medicine if the dying person is unable to take or tolerate oral medicines.
• Consider using a syringe driver to administer subcutaneous delivery of medicines for continuous symptom control. Particularly if more than 2 or 3 doses of any 'as required' medicines have been given within 24 hours.
• For people starting treatment who have not previously been given medicines for symptom management, start with the lowest effective dose and titrate as clinically indicated.
• Regularly reassess, at least daily, the dying person's symptoms during treatment to inform appropriate titration of medicine.
• Seek specialist palliative care advice if the dying person's symptoms do not improve promptly with treatment or if there are undesirable side effects, such as unwanted sedation.

Anticipatory prescribing

• Use an individualised approach to prescribing anticipatory medicines for people who are likely to need symptom control in the last days of life. Indications for use and the dosage of any medicines prescribed should be clearly documented in the individualised care plan.
• Assess what medicines the person might need to manage symptoms likely to occur during their last days of life (such as agitation, anxiety, breathlessness, nausea and vomiting, noisy respiratory secretions and pain).
• Discuss any prescribing needs with the dying person, those important to them and the multi-professional team.
• Ensure that suitable anticipatory medicines and routes are prescribed as early as possible. Review these medicines as the dying person's needs change.
• Health professionals should consider;
  • The likelihood of specific symptoms occurring.
  • The benefits and harms of prescribing or administering medicines.
  • The benefits and harms of not prescribing or administering medicines.
  • The possible risk of the person suddenly deteriorating (for example, catastrophic haemorrhage or seizures) for which urgent symptom control may be needed.
• If anticipatory medicines are administered:
  • Monitor for benefits and any side effects at least daily, and give feedback to the lead healthcare professional.
  • Adjust the individualised care plan and prescription as necessary