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Palliative care: Overview of mouth care at the end of life

Palliative care: Overview of mouth care at the end of life
Literature review current through: Jan 2024.
This topic last updated: Jun 22, 2022.

INTRODUCTION — Patients at the end of life are susceptible to a range of oral complications, including pain, salivary gland dysfunction, dysphagia, and oromucosal infections [1,2]. The oral cavity may be a site of treatment-related side effects in terminally ill patients or may be compromised by the effects of progressive, advanced disease [3,4].

This topic provides an overview of the importance of oral health in patients at the end of life as well as and the diagnosis and management of common oral complications. A more extensive discussion of swallowing disorders in palliative care patients is provided elsewhere, as is stomatitis/mucositis related to cancer treatment.

(See "Swallowing disorders and aspiration in palliative care: Definition, pathophysiology, etiology, and consequences".)

(See "Swallowing disorders and aspiration in palliative care: Assessment and strategies for management".)

(See "Oral toxicity associated with systemic anticancer therapy".)

(See "Management and prevention of complications during initial treatment of head and neck cancer", section on 'Mucositis'.)

THE IMPORTANCE OF ORAL HEALTH — Oral health is essential for communication, eating, speaking, and swallowing. Compromises can impact quality of life and contribute to functional decline and failure to thrive [5]. Oral health care is therefore an integral component of palliative care, with the goals of preventing oral complications, maintaining adequate oral function, and optimizing quality of life and comfort [6].

Routine oral hygiene should be maintained in palliative care patients if at all possible (see 'Preventive oral care' below). In addition, replacing decayed, broken, and/or missing teeth at the end of life should be addressed if it is important to the patient and consistent with the goals of care. (See 'Role of the dentist' below.)

Particular concerns include:

Eating difficulty can lead to reduced food intake, poor nutrition, weight loss, and changes in facial structure.

Difficulty with speech and communication can contribute to undue stress and frustration on the part of both patients and their caregivers/families [7].

A patient’s concerns with facial and oral esthetics may relate to their desire to die with dignity and respect.

Usual oral hygiene practices may be neglected at the end of life [6], which can contribute to gingivitis and/or periodontitis, caries development, tooth loss, and halitosis. This can impact self-esteem, and family and friends may avoid contact with their loved one due to halitosis, worsening the patient’s isolation and depression [3,8].

Decayed, broken, and/or missing teeth can compromise mastication as well as increase the likelihood of oral soft tissue trauma and subsequent disability [9].

Salivary gland dysfunction (mainly xerostomia but also dysgeusia) can influence appetite, bolus formation, and the ability to swallow, as well as speech and communication.

Oral pain and/or ill-fitting dentures can compromise oral intake and further diminish a patient’s ability to communicate. This problem is especially common in patients with cachexia related to terminal illness.

ORAL HEALTH ASSESSMENT — A comprehensive oral health assessment include an oral symptom assessment and clinical examination. In addition, a cognitive assessment, functional assessment, and identification of goals of care provide supporting information. It is important to determine if the patient is capable of maintaining their own oral hygiene and to identify a person to monitor the oral health status of the patient.

Evaluation of symptoms — Some preliminary questions for patients include the following:

“Do you wear a partial or complete denture? If yes, do you have any problems with your denture? Do you remove your denture at night or for some period of time during the day? How do you clean your denture?”

“Do any particular foods or drinks cause discomfort?”

“What are you doing to care for your mouth and teeth?”

“Does your mouth or tongue feel dry?”

“Do you have pain in your mouth, teeth, throat, or when you chew?”

For patients who are experiencing pain, additional questions can include:

“Where do you have pain in your mouth? Can you point to it?”

“Do you have any pain when you eat or drink?”

“Do you have pain in response to hot or cold food or drink?”

“How long does the pain last after you eat or drink something?”

“Is it a dull, throbbing, or sharp pain?”

For nonverbal patients, pain can be assessed by palpating areas identified in the Kayser-Jones Brief Oral Health Assessment Tool (OHAT) (table 1).

Pain should be quantified using validated tools, although patients at the end of life may only be able to convey nonverbal cues of pain (form 1 and form 2) [10,11].

Patient behaviors may be pain related. The American Geriatrics Society categorizes six types of behavioral pain indicators, which may be helpful in the assessment of oral pain in the nonverbal patient (table 2).

Pain should be assessed, evaluated, documented, and repeatedly reassessed in all patients using an appropriate pain assessment tool (table 3) [12]. Family members, friends, and caregivers should also be engaged to participate in the pain assessment.

Oral health assessment tools — Several oral health assessments tools have been developed for health care providers working with geriatric patients [13].

The OHAT (table 1) [14] is a validated instrument that has been used to screen residents of nursing facilities for oral health status, including those with cognitive impairment [15]. It is designed for use by nondental professionals to assess the oral health status of a patient and identify the need for an examination by a dentist. The tool can also be used to establish a patient’s oral health status at baseline, prior to initiating an individualized oral hygiene care plan, and to monitor progress of the intervention. A score of 1 or 2 for any category requires an examination of the patient by a dentist [16].

Oral examination — An oral examination should be undertaken to identify the oral pathology and the state of oral hygiene. Oral function related to a patient’s ability to chew food, insert and remove a dental prosthesis, and speak should also be assessed and reported.

ROLE OF THE DENTIST — It is optimal to include a dentist in the interdisciplinary palliative care team, or for one to serve in a consulting role, although this is not always feasible. The role of the dentist is to assess oral health and determine the need for dental interventions. In the absence of a dentist, the palliative care team must be capable of performing an oral health assessment and developing a plan for oral care.

The scope of the oral care provided by dentists at the end of life may be restorative, preventive, or simply symptom-based comfort care. It may include extraction of infected or loose teeth and restoring carious teeth with interim restorative materials. The presence of teeth influences appearance, the ability to chew and bite, enjoyment of eating, and oral comfort [9]. Replacing decayed, broken, and/or missing teeth at the end of life should be addressed if it is important to the patient and consistent with the goals of care.

Dentists must individualize and prioritize the components of care to correspond to the patient’s health status [17]. In order to minimize overtreatment and/or even potentially harmful interventions at the end of life, treatment plans must be modified over time, based upon the clinical course and/or the patient’s goals of care.

PREVENTIVE ORAL CARE — Maintaining good oral hygiene can help reduce gingivitis, periodontitis, halitosis, oral infections, and caries risk. Oral hygiene should be performed at minimum twice daily:

Use a soft-bristled toothbrush with an over-the-counter fluoride toothpaste or a prescription-strength fluoride toothpaste (1.1% sodium fluoride). Place the brush at the gingival margin and use a circular motion to reach all surfaces of the teeth. An electric toothbrush may be more effective for patients with limitations in mobility, coordination, and dexterity.

Rinse thoroughly with water or an alcohol-free mouthwash to decrease bacterial load and improve halitosis.

Remove dentures, if present, and brush thoroughly with a denture brush and warm water. Dentures may need to soak in a solution if candidiasis is present.

Consider using over-the-counter lip care moisturizers including lanolin, Oral Balance, unflavored Chapstick, Vaseline, or cocoa butter to moisten lips if dry or chapped [18].

For patients who are unable to rinse or spit or who have swallowing problems, swab the mouth and teeth twice daily with a sponge toothette soaked in alcohol-free 0.12% chlorhexidine gluconate [19].

For patients at higher risk for caries due to greater functional or cognitive impairment, fluoride gels (1.1% sodium fluoride gel) can be applied with a brush and used daily, topical fluoride varnish (5% sodium fluoride varnish, 0.4 mL dose) can be applied at three-month intervals, or silver diamine fluoride (38% silver diamine fluoride) can be applied at three-month intervals [20-23].

COMMON ORAL CONDITIONS AT THE END OF LIFE — The most common oral problems among terminally ill patients are xerostomia, oral mucosal pain, infections, and problems with eating. Oral complications may be become greater as death approaches [1,2,24].

Swallowing disturbances are also common in palliative care patients, especially those with brain tumors, advanced neurologic disorders, and cancers of the upper aerodigestive tract. Dysphagia is a risk factor for aspiration pneumonia and airway obstruction and is addressed in detail elsewhere. (See "Swallowing disorders and aspiration in palliative care: Definition, pathophysiology, etiology, and consequences" and "Swallowing disorders and aspiration in palliative care: Assessment and strategies for management".)

Mucositis/stomatitis related to cancer treatment and oral toxicity associated with chemotherapy agents is discussed elsewhere. (See "Management and prevention of complications during initial treatment of head and neck cancer", section on 'Mucositis' and "Oral toxicity associated with systemic anticancer therapy".)

Xerostomia — Xerostomia (dry mouth) can occur in up to 80 percent of patients at the end of life and is a frequent complication of radiation therapy to the head and neck region.

Medication review is the first step in management. The primary cause is often the use of one or more xerogenic medications (table 4) [1,2,25,26]. In one survey, hospice patients with advanced cancer were on a median number of four drugs that were associated with xerostomia [27]. (See "Management of late complications of head and neck cancer and its treatment", section on 'Salivary gland damage and xerostomia'.)

Complications of hyposalivation include rampant tooth decay and oral candidiasis. Dry mouth and limited oral intake may also lead to an over-keratinization of the tongue dorsum (“hairy tongue”) (picture 1). Basic measures for dry mouth include minimizing use of pharmacologic therapies associated with salivary hypofunction (table 4), improved hydration, use of humidifiers, sugar-free chewing gums or candy, and mucosal lubricants/saliva substitutes. Use of prescription sialogogues is generally not indicated in end-of-life care.

Excess salivation — Sialorrhea or excess salivation may be caused by neuromuscular dysfunctions in patients with amyotrophic lateral sclerosis (ALS), cerebral palsy, stroke, and Parkinson disease [28]. It may also occur in patients affected by Alzheimer disease or myasthenia gravis who take drugs with reversible cholinesterase inhibitor activity. Saliva pools in the mouth due to a lack of swallowing rather than a true salivary gland hyperfunction. Symptoms can be embarrassing and socially disabling. Sialorrhea can contribute to skin irritation, poor oral health, and dehydration and can increase the risk of aspiration pneumonia.

For clinically significant sialorrhea, anticholinergic medications may be helpful (table 5), particularly glycopyrrolate because of its relatively low central nervous system activity. Intrasalivary gland injection of botulinum toxin A may be beneficial. For refractory cases, radiation therapy to the parotid and submandibular glands could be considered. However, each of these treatment options has significant side effects and may be contraindicated or poorly tolerated in various populations. A portable suction device can assist in temporary evacuation of secretions, although its effect is usually short lived. (See "Management of nonmotor symptoms in Parkinson disease", section on 'Sialorrhea' and "Symptom-based management of amyotrophic lateral sclerosis", section on 'Sialorrhea' and "Swallowing disorders and aspiration in palliative care: Assessment and strategies for management", section on 'Sialorrhea'.)

Orofacial pain conditions — Orofacial pain conditions of noninfectious etiology, such as myofascial pain and neuropathic pain disorders, may be encountered in up to two-thirds of patients at the end of life [1,2]. A careful history and physical examination may help to discriminate between odontogenic and other sources of pain. All patients with craniofacial pain syndromes should be evaluated by a dentist, should be instructed to maintain a soft diet, and should perform passive jaw-stretching exercises.

Myofascial pain – Parafunctional habits such as clenching and grinding of the teeth may lead to myofascial pain, with or without secondary temporomandibular joint arthralgia. Patients may complain of a dull, aching pain that is exacerbated with wide opening of the jaw and chewing [10]. Myofascial pain may present at the end of life even in patients with no prior history or known risk factors. (See "Temporomandibular disorders in adults".)

Management of myofascial pain includes systemic (eg, ibuprofen, naproxen) and topical (eg, diclofenac 1% gel) antiinflammatory therapy and, in severe cases, the use of muscle relaxants and a low dose of anxiolytics or antidepressants. Topical antiinflammatory preparations should be applied multiple times throughout the day to the affected areas. When trigger points are identified, intralesional therapy with corticosteroids and/or local anesthetics without epinephrine can be effective. (See "Interventional therapies for chronic pain".)

Trigeminal neuralgia – Trigeminal neuralgia is a painful paroxysmal neuropathic facial pain condition; its prevalence increases with age. Trigeminal neuralgia is characterized by intense unilateral electric shock-like pain in the distribution of one division of the trigeminal nerve. (See "Trigeminal neuralgia".)

Most cases of trigeminal neuralgia are effectively managed with carbamazepine. (See "Trigeminal neuralgia", section on 'First-line therapy'.)

Neuropathic pain – Central neuropathic facial pain may be a complication of multiple sclerosis or a stroke (see "Central neuropathic facial pain"). Persistent idiopathic facial pain is a neuropathic pain condition characterized by constant oral or facial pain in the absence of a known cause; it is often mistakenly attributed to odontogenic infection. (See "Overview of craniofacial pain", section on 'Persistent idiopathic facial pain'.)

Treatment for persistent idiopathic facial pain includes low-dose tricyclic antidepressants, clonazepam, gabapentin, or pregabalin. (See "Overview of craniofacial pain", section on 'Persistent idiopathic facial pain'.)

Oral dysesthesia – Oral dysesthesia is typically characterized by oral burning in the absence of physical causes with other associated symptoms, including tingling, taste changes, and xerostomia. This condition is discussed elsewhere. (See "Overview of craniofacial pain", section on 'Burning mouth syndrome'.)

Osteonecrosis of the jaw – Jaw pain may also be due to osteonecrosis of the jaw, which may be a long-term complication of radiation therapy to the head and neck (osteoradionecrosis) or medication related (most often from the use of antiresorptive therapy [high-dose bisphosphonates and denosumab] among patients with skeletal metastases). (See "Medication-related osteonecrosis of the jaw in patients with cancer".)

Treatment is discussed elsewhere. (See "Management of late complications of head and neck cancer and its treatment", section on 'Osteoradionecrosis and soft tissue necrosis'.)

Dental caries — Patients at the end of life may be at a greater risk for caries due to hyposalivation and/or decreased oral care [17]. Dental caries can be diagnosed on clinical examination in most cases, but intraoral dental radiographs may be necessary (image 1). Large dental caries may lead to pulpal necrosis and secondary infection (abscess) (picture 2). If untreated, an odontogenic infection may lead to pain/swelling, trismus, risk of sepsis, and other life-threatening complications. (See "Complications, diagnosis, and treatment of odontogenic infections".)

Prevention and treatment – The risk of developing dental caries can be reduced with good oral hygiene at bedside, low consumption of carbohydrates, and use of topical fluoride preparations, including fluoride varnishes and silver diamine fluoride [20-22]. Caries can simply be monitored unless symptomatic or considered at high risk for fracture and/or abscess formation. Gross decay with pulpal involvement requires dental extraction. For patients with dental phobia or anxiety, the use of a fast- and short-acting benzodiazepine prior to dental extractions or restorations can be useful [29]. Palliative management includes delivery of caries arresting chemotherapeutics (application of 38% silver diamine fluoride) [30], temporary restorations, and antibiotics in cases of acute infections.

Periodontal disease — Compromised oral hygiene is common in patients at the end of life, and this can contribute to gingivitis and periodontitis (picture 3). Periodontitis is a disease that affects the tissues surrounding the teeth (the gingiva, periodontal ligament, and alveolar bone). The clinical signs of periodontal disease include the presence of plaque and calculus; bleeding on probing, flossing, or brushing of the teeth and gums; periodontal pockets; and mobile teeth. In addition to the localized periodontal condition, the role of medications/medical conditions, such as calcium channel blockers, hypertension, and uncontrolled diabetes, can contribute to bleeding gums [31]. If untreated, periodontal disease may lead to abscess formation, tooth mobility, and subsequent tooth loss. (See "Overview of gingivitis and periodontitis in adults".)

Prevention and treatment – Treatment of periodontal disease in palliative care patients includes improvement of oral hygiene practices (eg, use of interproximal brushes) and antimicrobial therapies with topical chlorhexidine gluconate and/or systemic antibiotics, if appropriately aligned with the patient’s goals of care [32]. Localized scaling to remove obvious calculus deposits may be helpful. Extraction of loose teeth should be considered when there is aspiration risk.

Odontogenic infections — Most oral bacterial infections are odontogenic and originate from an infection of the dental pulp secondary to dental caries, or from the periodontium in patients with advanced or untreated periodontal disease. The different types of odontogenic infections are outlined in the figure and discussed in more detail elsewhere (figure 1). (See "Epidemiology, pathogenesis, and clinical manifestations of odontogenic infections".)

Treatment – A dentist should assess the patient for the location, severity, and symptoms of the infection. Acute and chronic odontogenic infections should be treated with antibiotics, analgesics, and/or root canal therapy or tooth extraction. In most cases, tooth extraction is recommended due to the difficulty in scheduling multiple visits for root canal therapy and subsequent tooth restoration. Considerations for extraction include gross tooth decay, tooth mobility, or a fractured tooth and root tips. It should be noted that the coordination of care may be challenging and prevent definitive treatment. In this case, relieving symptoms with antibiotic treatment and/or analgesics should be administered with appropriate follow-up to determine if the infection has subsided. The course of action should be appropriately aligned with the patient’s goals of care.

Viral infections — Herpes simplex virus type 1 (HSV-1), also known as herpes labialis, is the etiologic agent of vesicular lesions of the lips, tongue, and oral mucosa, commonly referred to as “cold sores.” Recrudescence of HSV-1 infection is common in debilitated patients, most frequently presenting as ulceration of the commissures of the lips and, less frequently, intraorally. Intraoral mucosal ulcerations are painful and characterized by shallow irregular margins (picture 4 and picture 5 and picture 6). Oral ulcers suspicious for HSV-1 should be swabbed for culture or polymerase chain reaction (PCR) to rule out viral infection.

Antiviral therapy with acyclovir or valacyclovir should be initiated if this is in keeping with the patient’s goals of care. Supportive care includes nutritional support and adequate hydration. Pain must be managed appropriately with topical/systemic analgesics [33]. (See "Epidemiology, clinical manifestations, and diagnosis of herpes simplex virus type 1 infection".)

Oral ulceration secondary to cytomegalovirus (CMV) infection in immunocompromised individuals is a rare occurrence. If a diagnosis of CMV infection is suspected, an oral biopsy may be obtained and submitted for histopathological examination and viral isolation.

Fungal infections — Oropharyngeal candidiasis is a frequent mucosal infection in palliative care patients, seen in up to one-third of patients [2]. Multiple contributing risk factors include poor oral hygiene, dry mouth, wearing of dentures, diabetes mellitus, antibiotic use, and long-term immunosuppression [34]. The usual causative agent is Candida albicans, but other species, including Candida glabrata, Candida krusei, and Candida tropicalis, have been isolated. (See "Overview of Candida infections", section on 'Oropharyngeal candidiasis'.)

There are several forms of oropharyngeal candidiasis:

The pseudomembranous form (“thrush”) is the most common and appears as white to yellowish curd-like papules and plaques on the buccal mucosa, palate, tongue, or oropharynx that can be easily wiped away, leaving a bleeding base (picture 7).

The atrophic form, also called denture stomatitis, is the most common form in older adults. It is often found under upper dentures and is characterized by diffuse erythema without plaques (picture 8) [35].

Hyperplastic candidiasis is a rare chronic variant that manifests with white plaques that do not rub off, suggestive of leukoplakia.

Candidal infection may also cause angular cheilitis with painful erythematous fissures at the labial commissures (picture 9). In some cases, there may be a bacterial component that would need to be treated.

Many patients with oropharyngeal candidiasis are asymptomatic. The most common symptoms that do occur are a cottony feeling in the mouth, loss of taste, and, in some cases, pain during eating and swallowing. Patients who have denture stomatitis usually experience pain. (See "Esophageal candidiasis in adults".)

Treatment includes topical and systemic antifungal medications. Fluconazole is highly effective and generally easier to dose as it is a single daily tablet. Commonly used topical agents include nystatin suspension and clotrimazole troches. It is imperative to also clean dentures regularly. Dentures should be cleaned and soaked in 3% sodium hypochlorite diluted in water (1:10) or an antibacterial solution (eg, chlorhexidine digluconate 0.12 to 2%) or the nystatin suspension overnight. Angular cheilitis is effectively managed with topical nystatin/triamcinolone cream or ointment.

MOUTH CARE IN THE LAST HOURS OF LIFE — In the last hours of life, we recommend prioritizing the following oral care to provide comfort care to a dying patient:

For dry, cracked lips, consider using over-the-counter lip care moisturizers including lanolin, Oral Balance, unflavored Chapstick, Vaseline, or cocoa butter to moisten lips [18].

For patients who are unable to rinse or spit, have swallowing problems, or have difficulty brushing their teeth, swab the mouth and teeth twice daily with a sponge toothette soaked in alcohol-free 0.12% chlorhexidine gluconate [19].

For patients who can drink and swallow, provide ice chips or water.

Remove dentures, if present, and brush thoroughly with a denture brush and warm water.

SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Palliative care".)

SUMMARY AND RECOMMENDATIONS

Oral health is essential for carrying out activities of daily living such as communication, eating, speaking, and swallowing. Oral complications that can arise in terminally ill patients, such as pain, salivary gland dysfunction, dysphagia, and oromucosal infections, can impact quality of life and contribute to functional decline and failure to thrive. Oral health care is an integral component of palliative care, with the goals of preventing oral complications, maintaining adequate oral function, and optimizing quality of life and comfort. (See 'The importance of oral health' above.)

The role of the dentist is to maintain and improve quality of life by assessing oral health and status and determining the need for any dental interventions. The scope of the oral care provided by dentists at the end of life can include restorative, preventive, and symptom-based comfort care. The dentist needs to individualize and prioritize care in a way that corresponds to the patient’s evolving health status and overall goals of care. (See 'Role of the dentist' above.)

Routine oral hygiene should be maintained in palliative care patients if at all possible. Maintaining good oral hygiene can help reduce gingivitis, periodontitis, halitosis, oral infections, and caries risk. Oral hygiene should be performed at minimum twice daily. (See 'Preventive oral care' above.)

Replacing decayed, broken, and/or missing teeth at the end of life should be addressed if it is important to the patient and consistent with the goals of care. (See 'Role of the dentist' above.)

Caries can simply be monitored unless symptomatic or considered at high risk for fracture and/or abscess formation. Gross decay with pulpal involvement requires dental extraction. Palliative management includes temporary restorations and antibiotics in cases of acute infections. (See 'Odontogenic infections' above.)

Treatment of periodontal disease includes improved oral hygiene practices (eg, use of interproximal brushes, localized scaling if necessary) and antimicrobial therapies if appropriately aligned with the patient’s goals of care. Extraction of loose teeth should be considered when there is aspiration risk. (See 'Periodontal disease' above.)

Salivary gland dysfunction in terminally ill patients can manifest as salivary gland hypofunction, most often related to use of xerogenic medications (table 4), or excessive salivary flow (sialorrhea). For clinically significant sialorrhea, anticholinergic medications may be helpful (table 5), particularly glycopyrrolate. (See 'Xerostomia' above and 'Excess salivation' above.)

Dysphagia is common in patients at the end of life, especially those with brain tumors, advanced neurologic disorders, and cancers of the upper aerodigestive tract. Swallowing dysfunction may lead to communication impairment, dehydration, and poor nutrition, and it is a risk factor for aspiration pneumonia and airway obstruction. Management of patients with swallowing difficulties is discussed elsewhere. (See "Swallowing disorders and aspiration in palliative care: Assessment and strategies for management".)

For infection with herpes simplex virus type 1 (HSV-I), antiviral therapy with acyclovir or valacyclovir should be initiated if this is in keeping with the patient’s goals of care; appropriate analgesia should be addressed. (See 'Viral infections' above.)

Treatment for oral candidiasis includes topical and systemic antifungal medications. Angular cheilitis is effectively managed with topical nystatin/triamcinolone cream or ointment. (See 'Fungal infections' above.)

Odontogenic infections should be treated with antibiotics, analgesics, and/or definitive treatment of the affected tooth (extraction, root canal with restoration) if the patient can tolerate the procedure. If definitive treatment cannot be performed, relieving symptoms with antibiotic treatment and/or analgesics should be administered with appropriate follow-up to determine if the infection has subsided. (See 'Odontogenic infections' above.)

Orofacial pain conditions of noninfectious etiology, such as myofascial pain, neuropathic pain disorders, and jaw osteonecrosis, may be encountered in patients at the end of life. A careful history and physical examination may help to discriminate between odontogenic and other sources of pain. All patients with orofacial pain should be evaluated by a dentist, should be instructed to maintain a soft diet, and should perform passive jaw-stretching exercises. Management is specific to the condition. (See 'Orofacial pain conditions' above.)

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References

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