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Mouth care at the end of life: ensuring comfort and dignity for your patients

Simple steps such as assessing pain and involving families in care can make a big difference

Simple steps such as assessing pain and involving families in care can make a big difference


Picture: Neil O'Connor

Mouth problems, including a dry or painful mouth, infections and changes in taste, are all common issues in dying patients. Maintaining oral health is an essential part of good care in the final weeks and days of life, but expert nurses warn it is an area that is frequently neglected or not done well.

Guidance from charity Marie Curie, the National Institute for Health and Care Excellence (NICE), the Scottish Palliative Care Guidelines and the UK Oral Management in Cancer Care Group (UKOMiC) all emphasise the need to focus on this aspect of care, particularly in the final days of life.

UKOMiC chair Barry Quinn, Macmillan director of nursing in cancer and palliative care at Barts Health NHS Trust, says: ‘Good mouth care is essential in care of the dying. It is important to bring comfort to the mouth and is something that any member of the healthcare team can do and also something families can be involved with. Often at the end of life, families feel quite helpless and can want to do something to provide some comfort.’

Difficulties with communicating and eating


Barry Quinn: ‘Mouth care is personal care’

Common problems include a dry mouth, often associated with difficulty speaking, chewing or swallowing, a painful mouth, fungal infections, changes in taste and, particularly in patients with neurodegenerative disorders, drooling caused by difficulty swallowing saliva.

Marie Curie points out that if these problems are not assessed and managed, they can cause further issues with self-esteem and the ability to communicate, socialise and enjoy food and drinks.

NICE guidance on care of the dying adult says staff should offer care of the mouth and lips frequently and include the management of dry mouth in the individual's care plan, if needed. The person should be offered help with cleaning their teeth or dentures and frequent sips of fluid.

Personal care

Dr Quinn says standards in practice are often not what they should be. ‘In a hospice setting I would like to think [mouth care] is done well, but in someone’s home or an acute hospital on a medical, cancer or older people ward it needs to be done better and more regularly,’ he says.

‘We have over-medicalised death and there is a lot of focus on symptom management, as there should be, but not all symptoms are dealt with by medication. Some of it, such as mouth care, is personal care.’

Steps to maintain mouth care in the last days of life

  1. Include mouth care in the patient’s care plan
  2. Encourage family members who may wish to participate in mouth care with guidance and support from the healthcare team
  3. Consider changing or stopping medicines that are causing a dry mouth
  4. Carry out mouth care as often as necessary to maintain a clean mouth
  5. In people who are conscious, the mouth can be moistened every 30 minutes with water from a water spray or dropper or ice chips can be placed in the mouth
  6. In people who are unconscious, moisten the mouth frequently, if possible, using water from a water spray, dropper, sponge stick or ice chips placed in the mouth
  7. Apply a water-soluble lubricant to prevent cracking of the lips
  8. When the weather is dry and hot, use a room humidifier or air conditioning if possible
  9. Offer help to clean teeth or dentures
  10. Manage oral pain symptomatically, using analgesics via a suitable route
  11. Stop treatment of the underlying cause of oral pain when the burden of treatment outweighs the benefits

Source: Scottish Palliative Care Guidelines – Mouth care

 

Eliminating variation in practice

Sue Dargan, Macmillan lead nurse for cancer, palliative and end of life care at Ashford and St Peters NHS Foundation Trust in Surrey, says that the foundation of good mouth care is nurses being able to assess the mouth. 

At her trust, mouth care is part of individualised care planning carried out by nurses and is on symptom observation charts.

Ms Dargan suspects that there is a lot of variable practice in mouth care, even within a single setting. 


Picture: John Houlihan

‘If you ask most nurses if they can do mouth care and if they are competent, they would say they are,’ she says.

‘But when you go around wards, you see dry mouths, oxygen masks still on, and sponge swabs sitting in fluid. There are huge cultural and historical practices around mouth care with the dying patient, rather than care based on the best evidence.’

Preventative approach

The focus of good mouth care has shifted over the past decade or so from treating problems towards prevention.

Dr Quinn says that UKOMiC latest guidance, published in June for patients with cancer and those receiving palliative care, advocates a four-step approach, as follows:

  1. Assessing the mouth and considering whether someone is at high risk. Assessments should be undertaken by trained health professionals using a recognised grading system, and should include changes to the oral mucosa, the presence or absence of pain, the patient’s nutritional status and the level of fatigue.
  2. Mouth care, which includes cleaning teeth with a toothbrush, and can include providing moisture using ice chips, mouth sponges and water droppers. 
  3. Taking measures to prevent mouth problems.
  4. Treating any specific problems such as infections.

Taste for Pleasure: a mouth care case study

From whisky and prosecco to tea and cola, dying patients are being offered the chance to enjoy favourite tastes a final time at one hospital trust keen to improve end of life care.

Families have told staff at the Shrewsbury and Telford Hospital NHS Trust how much they appreciate the chance to share their loved ones’ drink of choice with them in their final days.


A picture of a swan has replaced the traditional ‘nil by mouth’ sign in end of life care at the trust

The trust’s end of life care and speech and language therapy teams introduced the Taste for Pleasure initiative after a volunteer pointed out how distressing a ‘nil by mouth’ sign above the bed of a dying patient can be.

The sign has since been replaced by a picture of a swan, and patients are now given the opportunity to have their favourite drinks used to moisten their mouths.

‘There is only one chance to get it right in the care of the dying. We want our staff to be empowered to offer this’

Taste for Pleasure was introduced gradually at the trust and now has a standard operating procedure backed by the board, to ensure it is offered in a standardised way across the organisation. Drinks generally have to be provided by family or relatives unless they are widely available, such as tea.

End of life care facilitator Jules Lewis says: ‘We have had some amazing experiences. We have had a family who shared prosecco with their mother, and they told me how important it was to them, the memory of those last hours. Tea is also a popular choice. 

'There is only one chance to get it right in the care of the dying. We want our staff to be empowered to offer this.’

A post on social media about the initiative received more than 3,000 enthusiastic responses. This included comments from nurses at hospices, care homes and hospitals who said they would like to introduce something similar, and some who said they already use a similar approach with patients at the end of life.

 


Picture: Tim George

Follow local guidance on using foam swabs

There has been some controversy about the use of foam swabs in mouth care, including concern about the sponge detaching from the stick.

But Dr Quinn says problems have stemmed from them being used incorrectly and nurses should follow local guidance on the issue.

The swabs are single use items that should not be left sitting in fluid that can erode the sponge, he says.

Including families

The Scottish Palliative Care Guidelines says families should be encouraged to get involved in mouth care for patients at the end of life. However, Marie Curie also points out that while many relatives will want to help, some will be uncomfortable with this, and others may find it distressing as it will emphasise how seriously unwell their loved one is.

However all the experts agree that mouth care needs to be given the priority it deserves. 

‘Good mouth care is not expensive, the big thing is just thinking about it and thinking about your own mouth and how it feels if you are prevented from cleaning it for just one day,’ Dr Quinn says.

Risk factors for oral problems in end of life and cancer care

  • Older patient
  • Poor oral or dental health
  • Poor nutrition or hydration
  • Co-morbidities
  • Inability to perform oral care
  • Malignant oral disease
  • Prior systemic anti-cancer treatments
  • Supportive therapies including bone modifying agents

Source: UKOMiC Oral Care Guidance and Support in Cancer and Palliative Care: Third edition


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Erin Dean is a health journalist

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