End of life mouth care: the experiences of two dental professionals

By Professor Parmjit Singh and Miss Serpil Djemal

The mouth is considered the most important organ of expression and it is often affected in the later stages of malignant terminal conditions.[1]  As the disease advances, oral problems can cause great distress, pain and discomfort, interfering with appetite, taste, chewing, swallowing, nutrition, speech, social interactions, and sleeping.[2]

As the number of days to death decreases, oral symptoms such as xerostomia, tongue inflammation, dysphagia and need for assistance with mouth care have been known to increase.[3]  There are comprehensive guidelines for mouth care in the palliative care patient in general as well as specific advice for mouth care in the last few days of life.[4]

Despite this, the oral health of palliative care and end of life patients is an area that has often been overlooked and neglected.[5]  In a hospice setting, it is thought that caregivers hesitate, are not instructed or simply do not elect to extend mouth care for patients nearing the end of life.[6]  Mouth care in hospices has been described as irregular, incorrect and even dangerous for their vulnerable patients.[7]

When patients are given verbal information supplemented with written educational material early in their disease pathway, this is often insufficient to allow patients to retain this important information.[8]  Nevertheless, an abundance of information is available from a number of cancer support websites in relation to mouth care.[9,10]   In addition, there is information available for carers, who may be required to support the mouth care of the patient.[11]  Since this information is in the public domain, patients and their carers should be able to access it as and when required.

However, it is understandable that caring for a loved one receiving palliative care brings with it huge emotional challenges so accessing appropriate mouth care may be neglected at this time.  This advice for mouth care should therefore be readily available from dental professionals and palliative care teams, even if in the form of appropriate signposting.

Despite this, it is noted that a dentist is rarely an active member of the palliative care team.[12.13]  This omission may be due to the overburdening nature of the other symptoms of a dying patient but the need for good mouth care should not be underestimated, right up to the last few days of life.

Systematic assessment of the mouth is essential, using a glove, torch and tongue depressor.[2]  If treatment is possible, this should focus on improving the quality of life of the patient instead of striving for curative treatment approaches.[14]

Indeed, once conditions have been identified, much of the advice given for the mouth care in palliative care patients is based on expert opinion rather than being evidence-based.[7]

A patient who had been given a diagnosis of advanced stage IV adenocarcinoma in the lower lobe of the right lung with metastases in the liver and bones (T4N3M1c) was advised he only had a few weeks to live.  Preparations for end of life care involved two dental surgeons who were able to take practical measures using their professional resources to improve his end of life mouth care and overall quality of end of care life.

Up until the last three weeks of life, the patient was able to manage his own toothbrushing.  It then became necessary to use a small washing bowl and flannel and hold this in front of the patient whilst he used a soft brush with only a smear of toothpaste on his electric toothbrush.  The bowl served as a spittoon during brushing and for rinsing his mouth at the end.  A soft toothbrush has been recommended since the oral mucosa is very sensitive to trauma.[15]  An electric toothbrush was preferred since this was not only the usual type used by the patient, it also reduced the need for exertion by the patient, particularly important as slightest movement of his limbs significantly increased his breathlessness.  The dental professionals were however, mindful of how much toothpaste was to be used since swallowing it can burn sensitive oral tissues and the foaming action can induce a gag reflex and may lead to choking.[2]

In the last few days of life, when brushing was not possible, single use sponges on sticks were used to help clean inside his mouth and around the lips (Figure 1).  They were dipped in diluted alcohol-free chlorhexidine gluconate mouthwash.  Mouth rinses with alcohol were avoided as these have been known to desiccate the oral tissues,[15] however, dipping the sponges in alcohol-free chlorhexidine gluconate to clean inside the oral cavity were found to be useful toward the end when the frequency of brushing decreased.

The oral cavity was checked regularly using a disposable mouth mirror and a tongue spatula (Figure 2) with the assistance of a torch (e.g. smartphone torch).  This allowed assessment for oral candidiasis as well as oral ulceration, both of which were conditions that the patient was suffering from.  Oral candidiasis was treated with fluconazole and the ulcers were managed with alcohol-free chlorhexidine gluconate.

Dry mouth is another debilitating symptom and the degree of this dry mouth became progressively worse as the number of days to death reduced.  This was managed largely by encouraging the use of a plastic toddler beaker with handles that could be easily grasped by the patient to allow frequent sips of water.  When this was no longer possible, the single use sponges were used to help keep his lips moist.

Providing carers with masks and gloves could make mouth care more acceptable to them thereby removing barriers to good oral health for the patient.  This should be discussed with the patient so that they are not upset by their use.

To minimise unnecessary suffering in end of life patients, attainment of good oral health should continue to be a priority.  Many of the suggestions in this letter could be used by non-dental carers to make mouth care easier and less unpleasant to make a significant difference to the patients comfort in the last days of their life.

 

REFERENCES

 

  1. Mol RP. The role of dentist in palliative care team. Indian J Palliat Care 2010; 16: 74-78.
  2. Saini R, Marawar PP, Shete S, Saini S, Mani A. Dental expression and role in palliative treatment. Indian J Palliat Care 2009; 15: 26-29.
  3. Matsuo K, Watanabe R, Kanamori D, Nakagawa K, Fujii W, Urasaki Y, Murai M, Mori N, Higashiguchi T. Association between oral complications and days to death in palliative care patients. Support Care Cancer 2016; 24: 157-161.
  4. Scottish Palliative Care Guidelines. NHS Scotland Website. palliativecareguidelines.scot.nhs.uk/guidelines/symptom-control/Mouth-Care.aspx. (accessed 10 February 2020).
  5. Mouth care matters. A guide for hospital healthcare professional. London: Health Education England; 2016.
  6. Soileau K, Elster N. The hospice patient’s right to oral care: making time for the mouth. J Palliat Care 2018; 33: 65-69.
  7. Delgado MB, Burns L, Quinn C, Moles DR, Kay EJ. Oral care of palliative care patients – carers’ and relatives’ experiences. A qualitative study. Br Dent J 2018; 224: 881-886.
  8. Wilberg P, Hjermstad MJ, Ottesen S, Herlofson BB. Chemotherapy-associated oral sequelae in patients with cancers outside the head and neck region. J Pain Symptom Manage 2014; 48: 1060-1069.
  9. Mouth Problems and Mouth Care. Marie Curie Website. mariecurie.org.uk/help/support/terminal-illness/manage-symptoms/mouth-problems-care. (accessed 10 February 2020).
  10. Mouth Problems. Macmillan Cancer Support Website. macmillan.org.uk/cancer-information-and-support/impacts-of-cancer/mouth-problems. (accessed 10 February 2020).
  11. Helping Someone with Mouthcare. Marie Curie Website. mariecurie.org.uk/help/support/being-there/caring/helping-mouth-care. (accessed 10 February 2020).
  12. Ohno T, Morita T, Tamura F, Hirano H, Watanabe Y, Kikutani T. The need and availability of dental services for terminally ill cancer patients: a nationwide survey in Japan. Support Care Cancer 2016; 24: 19-22.
  13. Wiseman M. Palliative care dentistry: focusing on quality of life. Compend Contin Educ Dent 2017; 38: 529-534.
  14. Schimmel M, Schoeni P, Müller F. Dental aspects of palliative care. Possibilities and limits of dental care and special demands on the dentist. Schweiz Monatsschr Zahnmed 2008; 118: 851-862.
  15. Wiseman M. The treatment of oral problems in the palliative patient. J Can Dent Assoc 2006; 72: 453-458.

 

FIGURES

 

Figure 1. Single use sponges.

Figure 2. Disposable mouth mirror and tongue spatula.

 

AUTHOR INFORMATION

Professor Parmjit Singh (Corresponding Author)
BDS, MFDS, MSc, MOrth, FDS (Orth) RCS Eng, AFHEA
Professor of Orthodontics
Faculty of Life and Health Sciences
College of Medicine and Dentistry
University of Ulster
32-34 Colmore Circus
Birmingham
B4 6BN
UK
Email: parmjitsingh@hotmail.com
Telephone: 07808 887 457

Miss Serpil Djemal
BDS, MSc, MRD, FDS RCS (Rest Dent), DipEd
Consultant in Restorative Dentistry
Department of Restorative Dentistry
King’s College Hospital Dental Institute
Bessemer Road
London
SE5 9RW
UK
Email: serpil.djemal@nhs.net
Telephone: 0203 299 5282

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