Mouth Care Lead Sarah Haslam says that caring for the mouth in patients approaching the end of their life maintains their comfort, self-esteem and dignity.
'Despite its acknowledged importance, oral care is one of the first things to be set aside when workloads are excessive'1
Mouth care is more than just cleaning teeth. Mouth care in end of life care maintains comfort, self-esteem and dignity.
The mouth is often referred to as the 'gateway to our body'; it is often the initial site of where treatment-related side effects in terminally ill patients will manifest, or it may be compromised by the effects of progressive, advanced disease. Mouth care is essential for communication, eating and swallowing.
The oral complications that can arise in terminally ill patients can impact quality of life (QOL) and contribute to functional decline and failure to thrive. Mouth care is therefore an integral component of both palliative and end of life care, with the goals of preventing oral complications, maintaining adequate oral function, and optimising QOL and comfort.
Mouth care impacts a person's dignity as well as oral function. While easily overlooked, a patient's concerns with facial and oral aesthetics may relate to his or her desire to die with dignity and respect.
Mouth care is, sadly, often neglected at the end of life as usual practices, such as cleaning teeth of terminally ill patients, may be forgotten. This can contribute to gingivitis, caries development and halitosis. This can impact self-esteem. Additionally, family and friends may avoid contact with their loved one due to halitosis, worsening the patient's isolation and depression.
I remember being told by a colleague about a patient who was approaching the end of his life and refused to kiss his wife goodbye because he was so embarrassed about his mouth. That story has always stuck with me, as it highlights how important someone's mouth care is to them.
The mouth goes on that journey with the patient and is often the last area of the body that the relative can be involved in caring for. Enabling relatives and carers to provide mouth care is important as it allows them to support their loved one and be a valued part of the patient's care. With this in mind, it is important that healthcare professionals, carers and relatives are aware of some of the common oral complications that can occur at the end of life.
Common oral complications
Dry mouth is clinically known as xerostomia, derived from the Greek word xeros meaning 'dry' and stoma meaning 'mouth'. Dry mouth can be caused by mouth breathing, reduced salivary production and as a side effect of medications.
Patients who suffer from a dry mouth will experience dry lips, sore soft tissues, bad breath, an alteration in taste and difficulty speaking, eating and swallowing. From a quality of life perspective, this can impact greatly on the patient and their relatives.
Oral candidiasis can present as thick, white patches or plaques on the tongue, cheeks, throat and palate. Oral candidiasis can cause loss of taste, redness, soreness, or angular cheilitis.
Angular cheilitis is a condition where the lip becomes inflamed and irritated; angular is defined as 'angle' or 'corner' so angular cheilitis means inflammation within the corners of the lips. The cause of oral candidiasis should be identified, such as immunosuppression, steroid use (oral/inhaled), dry mouth, dehydration, mucosal damage and/or poor oral hygiene.
Oral candidiasis is treated with anti-fungal medication which is prescribed by the medical team. A note of warning: Nystatin, an anti-fungal medication and chlorhexidine mouthwash should not be used at the same time, but rather one hour apart as they inactivate each other. Another point to be aware of: if chlorhexidine mouthwash is appropriate for mouth care, then the chlorhexidine mouth wash without alcohol should be considered, as alcohol is astringent and can make the soft tissues of the mouth dry and uncomfortable
It is also important to wait 30 minutes between the use of toothpaste and chlorhexidine mouthwash and to consider changing the patient's toothbrush more often. Optimising oral hygiene such as brushing the tongue if tolerated is an important part of managing oral candidiasis.
As a dental nurse, we don't usually see very ill or dying patients so it's something I've learnt about during my time as a mouth care lead. My palliative care team and I work closely together, seeing patients jointly on the wards. We saw a gentleman who was approaching the end of his life with his family present. We provided assurance and support for the patient as well as his family. The gentleman had audible secretions that required medications to manage and excess secretion residue present in his mouth. The Palliative Care Nurse and I provided mouth care advice, taste for pleasure and secretion management advice to his family.
Taste for pleasure allows patients who are approaching the end of their life to have their favourite flavours on their lips. This can be any flavour, from blackcurrant squash to tea, all the way up to whiskey! I have found Costa's Babyccino coffees very popular. I know I would like to have tea as my taste for pleasure.
“I remember being told by a colleague about a patient who was approaching the end of his life and refused to kiss his wife goodbye because he was so embarrassed about his mouth. That story has always stuck with me, as it highlights how important someone's mouth care is to them.”
I remember seeing one patient who was approaching end of life. He had a dry mouth as he was open mouth breathing. I provided dry mouth care using a soft toothbrush and dry mouth gel. While providing dry mouth care, the patient's son asked me if I had ever been bitten when providing mouth care. I said no; however, I have been bitten, not by a person but by a puppy, when I worked as a volunteer at Blue Cross Animal Hospital.
A privileged position
After losing my Dad last year, I initially struggled with seeing end of life patients because every one of them reminded me of my dad.
However, with support from colleagues and learning to give myself time, I have changed how I see my role and, instead of feeling sad, I consider it a privilege to be allowed to support my patients and their families during their final days or hours. It is also important to talk. I have developed a strong rapport with my palliative care team, now deliver mouth care talks to my local hospice, and I am palliative care link nurse in my hospital.
In conclusion, it is essential as part of end of life care that the mouth deserves the same respect as we give the rest of the body. Mouth care is important for comfort and providing dignity for the patient and their family.
As Sara Hurley, Chief Dental Officer said:'Every patient has a mouth, therefore each and every care pathway must reflect the enduring need for oral care; this begins by "putting the mouth in the body".'
Sarah would like to dedicate this article to the memory of her Dad and to all those who have lost someone.
McGuire D B. Barriers and strategies in implementation of oral care standards for cancer patients. Support Care Cancer 2003; 11: 435-441.
About this article
Cite this article
Haslam, S. Why mouth care matters in end of life care. BDJ Team 7, 10–11 (2020). https://doi.org/10.1038/s41407-020-0255-7