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Advice on managing terminal agitation and how to cope after the difficult death of a patient
Terminal agitation is a palliative symptom that patients sometimes experience as they enter the last days and hours of their life, and which can leave nurses feeling distressed, according to research.
Cancer Nursing Practice. 22, 3, 17-19. doi: 10.7748/cnp.22.3.17.s7
Published: 02 May 2023
Marie Curie senior nurse Sue Ebbage says terminal agitation requires a rapid response. ‘You need to identify the problem quickly and try to reverse it,’ she says. But that is not always easy. This is a condition that can present with a wide range of signs and symptoms and trying to determine the root cause may be challenging.
Terminal agitation goes by other names, including terminal restlessness and terminal delirium, but agitation is the common feature. As a former Macmillan nurse, Ms Ebbage saw terminal agitation frequently in patients and says almost half of all those admitted to hospices show signs of the condition.
Prevalence in the last six hours of life may be as high as 88%, according to research noted by nurses at the Royal Marsden School. Effective management depends on holistic assessment to help identify the causes of terminal agitation, Ms Ebbage says.
All aspects of the patient’s care and needs, including psychological, physical, social, cultural and spiritual factors, must be considered. ‘You have to quickly flick through all of those as you make that assessment,’ she says.
More obvious causes can be easily remedied. ‘Make sure they don’t have pain, don’t have a full bladder and are unable to pass urine, and they’re not too hot or not too cold,’ she says.
Other reversible causes may be less immediately obvious – for example, conversations occurring nearby that the patient can hear but, for whatever reason, cannot contribute to, leading to frustration and distress. Sometimes a patient may simply want to be heard.
Ms Ebbage recalls being asked to see a man in a busy hospital who was approaching the end of life and was anxious and restless.
She found that all he wanted was to go to a smaller community hospital nearer his home. Once there, he was more settled.
‘It was fairly simplistic in a way, but to that man it was huge and it influenced his behaviour on the ward,’ says Ms Ebbage.
Regular contact with a patient before and during the palliative stage of illness can help with assessment, suggests John Frost, associate specialist nurse practitioner at St Barnabas Hospice, which provides inpatient and community services across Lincolnshire.
‘Sometimes we may get a late referral or go and see someone as an SOS and we may not know that patient,’ Mr Frost says.
‘The assessment process then takes more unpicking than it would with patients we know and who we see on a regular basis.’
Biochemistry disorders such as hypercalcaemia can also lead to terminal agitation.
As palliative care guidelines from Health Improvement Scotland explain, hypercalcaemia – a raised level of calcium in the blood – is the most common life-threatening metabolic disorder in patients with cancer, especially those with breast, lung and renal disease.
When Susan Lowe’s mother, Sheila, was approaching the end of her life at the age of 74 she was clear that she wanted her final days to be spent at home.
She had bowel cancer and knew she was dying. A hospital bed was set up in the house she shared with her husband, and Ms Lowe and her sister moved in to help care for their mother.
They had support from district nurses but, says Ms Lowe, for family members inexperienced in palliative care there was a lot to learn.
‘Looking back, it was such a big responsibility for us to be left with,’ Ms Lowe says.
‘I had looked up what happens when people die, and the Marie Curie website has some good information, but we felt a little bit left on our own.
‘We were with her round the clock, taking it in turns through the night to be at her side.’
Fentanyl patches and morphine had been prescribed for pain, along with midazolam to ease restlessness, but they did not always control her mother’s symptoms, she says.
‘Particularly one time, it wasn’t enough and my mum was writhing in pain. It was difficult to see.’
The GP had not seen Ms Lowe’s mother for several months and when asked by a district nurse to increase her analgesia, he felt it was not necessary, Ms Lowe says. It was only then that the family were told about syringe drivers and their role in moderating pain and agitation.
‘Having that steady flow from the syringe driver did help and she died the next day. In the last few hours she was a lot more settled.’
Nurses as advocates
Ms Lowe urges nurses to keep in mind the challenges for families managing terminal agitation in a loved one at the end of life.
‘Think more about the impact on families and the people who are left alone to care for the person, and be an advocate for what’s going to be the right dose of painkillers and anti-agitation medication,’ she says.
‘As nurses are the ones seeing the patients, they seem to be in a much better position and have much better understanding about what the patient actually needs – and they can inform the GP.’
The syringe driver helped make her mother’s last hours much more peaceful, says Ms Lowe.
‘It was amazing that she woke up just before she died and she gave me a hug and gave my dad a hug to say goodbye. That was the most beautiful experience of my life.’
Hypercalcaemia can precipitate or worsen pain, and symptoms include delirium, confusion and seizures.
Treatment may not be appropriate if the patient is close to death but if it is judged necessary, transfer to hospital or a hospice for intravenous pamidronate will be required, says Ms Ebbage.
Decisions about best interests will come into play in such situations, which means consulting with family as well as the patient, she adds.
‘When considering causes of confusion or agitation, the burdens of treatment need to be weighed against the potential for improving comfort’
West Midlands Palliative Care
‘It’s a lot about keeping the person in their preferred place of care and where they want to die, about their comfort and what they want.’
Infection, cerebral metastases and the adverse effects of medicines such as opioids and steroids are among the other causes of terminal agitation listed by West Midlands Palliative Care, a group of clinicians that offers education and research resources.
‘When considering whether or not to treat these causes of confusion or agitation, the burdens of treatment need to be weighed against the potential for improving comfort at the end of life,’ it says.
It also lists spiritual distress as a precipitating factor in terminal agitation, underlining the importance of holistic assessment.
In its guideline on the care of dying adults, the National Institute for Health and Care Excellence (NICE) says non-pharmacological approaches to symptom management are an important part of high-quality care at the end of life. These include repositioning the patient to help control pain and using fans to ease the effect of breathlessness, thereby reducing restlessness.
Medication may be necessary to manage terminal agitation. Benzodiazepines can be trialled to see whether they help reduce distress and anxiety, NICE advises.
Ms Ebbage says midazolam, lorazepam and occasionally diazepam are the drugs prescribed to gain control of the patient’s symptoms.
Seeing a patient close to death who is also experiencing terminal agitation can be distressing for family members.
Mr Frost stresses the importance of early dialogue with patients and loved ones to help prepare families for the final days and hours and the possibility of terminal agitation.
‘We’re focused on advanced care planning and, if people are open to that, we can have conversations about some of the things that may happen towards the end of life.’
But family members may not always want to talk about such matters, he adds.
‘So then it’s about being able to give reassurance and supporting them, trying to explain why the patient may be agitated and how we’re going to try to reduce it.’
Sedation is one management approach. ‘But not everyone wants their family member to be sedated,’ Mr Frost says.
‘If that’s the case, what we try and encourage them to do is to sit with their loved one and reassure them.’
Distraction techniques and calming music can help, he says, so can objects such as fiddle blankets with buttons and toggles attached, that are designed to help relieve the patient’s restlessness.
Nurses, too, can be upset by seeing terminal agitation and may require support afterwards. Mr Frost recalls a patient he was called to see, a year into his current post. The man was in his fifties, with brain metastases and terminal agitation.
‘He was clearly dying and held his hand out to his daughter but she was too distressed and left the room. So I held his hand, which was trembling. Then it stopped and he died.
‘So I was the one who felt his last energy, and that made quite an impact on me. I still think about him to this day.
‘It’s not something you forget easily.’
Severe cases of terminal agitation can be upsetting to witness, especially for nurses who do not have much experience of caring for dying patients.
Marie Curie senior nurse Sue Ebbage has been in nursing for 47 years and still draws on the support of colleagues when she feels the need to debrief.
NHS England cautions that traumatic events can often lead to various strong emotions, including helplessness, anger, fear and intrusive thoughts or images of the event.
Guilt and shame
The Royal College of Psychiatrists (RCP) says people involved in traumatic incidents may blame themselves for what happened and can experience guilt and shame. NHS England suggests several actions that can help, including:
» Sharing your feelings with family or colleagues
» Taking time to cry if you need to
» Doing things you enjoy and that make you feel good
» Looking after yourself: eat and sleep well, exercise and relax
Speak to others who have experience of similar events, the RCP advises, and make use of any workplace support systems.
Free resources and counselling
The RCN has some free resources on mental well-being, while members can contact the college’s confidential counselling service.
Associate specialist nurse practitioner John Frost provides clinical supervision to the team he works with at St Barnabas Hospice in Lincolnshire.
He says: ‘Anyone in distress can come to me and we can talk things through from a clinical point of view – what was good or bad, and what we’d change next time.
‘At St Barnabas we have a well-being service that provides emotional and spiritual support for staff, similar to the service for patients and family members.
‘It’s accessible and includes counselling. I’ve used the service personally and I can’t speak highly enough of it.’
Marie Curie (2023) Agitation in Palliative Care.
Marie Curie (2023) When Someone Dies.
NICE (2015) Care of Dying Adults in the Last Days of Life. www.nice.org.uk/guidance/ng31
NHS England (2023) Help and Support After a Traumatic Event.
Royal College of Psychiatrists (2023) Coping After a Traumatic Event.
RCN (2023) Counselling Service.
RCN (2023) Supporting Your Mental Well-Being.
Royal Marsden School (2020) Management of Terminal Agitation and its Impact on Patients and Healthcare Professionals.
West Midlands Palliative Care (2021) Restlessness and Agitation in the Dying Phase.
