Oral comfort care for end-of-life patients
by Noel Kelsch, RDHAP
She did not move when the doctor walked in holding an X-ray of her brain in his hands. His words swam around us and ended with, “I am sorry, Melissa, there is nothing else that can be done. Have you thought about how you want to handle pain control?” Melissa, my dear friend, bent over and pressed the emesis basin against her lips, saying nothing but clearly feeling everything. After years of battling cancer, her life was coming to an end.
I handed the doctor her plans. The words on the paper reflected the months we spent together discussing the future, the end of her life. Knowing how many days there are left in the calendar of your life makes each day so precious. Comfort and quality of life become the focus and goal (De Spelder, 2005). Being able to fill those days with quality and comfort is a gift dental hygienists can help give to patients.
In the United States, a majority of people die from chronic degenerative diseases (Lynn, 1996). As the population ages and the incidence and prevalence of chronic conditions are widespread, patients’ needs are increasing in their complexity. Patients referred to palliative and hospice care are quickly becoming debilitated by the nature of their serious or life-threatening illness. Owing to advanced chronic conditions (e.g., neurological, cardiac, or respiratory diseases) or malignancies, oral care can threaten the quality of life, complicate care, and increase the cost of care.
In considering problems targeted in caring for dying patients, oral care is rarely addressed by other caregivers (Stromgren et al. 2001). Because dying patients may have many oral complications such as oral mucositis, candida, xerostomia, etc., dental hygienists need to understand the critical issues facing patients nearing the end of life.
Palliative care vs. definitive care
According to the World Health Organization, the goal of palliative care is to promote the quality of life, being supportive by focusing on managing and controlling patients’ symptoms to achieve the best possible quality of life for patients and their families, neither hastening nor postponing death (World Health Organization, 1989). Pain is the most common symptom that is often undertreated (Cleeland et al. 1994; SUPPORT Principal Investigators, 1995) and the one that dying patients fear the most. Although certain aspects of palliative care, specifically comfort care, can be of benefit earlier in the course of illness, end-of-life palliative care enables patients to spend their last days with dignity by having elected care. Many of the treatments previous to palliative care leave the patient feeling forced to “do or die.” Palliative care has a more holistic approach by focusing on the physical (including pain, nausea and vomiting, or dyspnea), psychosocial, and spiritual problems of the dying.
Providing oral care, although it is often curative, is also palliative. It may seem contradictory, but patients nearing the end of their lives may benefit from the curative aspects of oral wound care. Oral wound care may lead to oral healing, even among the dying. Physiologically, prior to a patient’s death, body systems begin to shut down usually over a period of 10 to 14 days or within 24 hours (Weissman, 2000) and blood circulation slows down. In some instances, the oral wound will heal in the weeks or days preceding death. Although oral wound healing may be thwarted by the physiology of the terminally ill, poor oral wound care and management of symptoms can be responsible for patient discomfort and can have a devastating effect on patients’ quality of dying (Mallett et al. 1999).
Treatment planning and patient rights
The Patient Self-Determination Act provides patients the legal right to make health-care decisions. This right includes decision for end-of-life care and palliative treatments. Some patients have made advanced autonomous choices about their care at the end of life. These advanced directives or living wills, including do-not-resuscitate orders, are intended to reduce aggressive interventions. However, research has found that when patients have advanced directives, they are more likely to have more invasive and expensive care than patients without an advanced directive (Teno et al. 1997), thus illustrating that their prior wishes are ignored, primarily after the patient becomes incompetent.
According to the principles of autonomy (or self-determination), providers and patients have an interdependent, shared decision-making relationship that is conducive to enabling patients’ self-determination. Providers share their clinical knowledge and expertise, treatment recommendations, and values, and patients use their experience, perceptions, and values.
Patients are competent to make decisions when:
- They are informed and able to understand the facts.
- They are able to make rational treatment decisions.
- They understand the implications of their decisions.
- They can communicate their choices.
When patients withdraw from treatment or refuse treatment, clinicians must respect the choice and not unduly pressure patients. When the patient is not competent, the best interests of the patient must then be considered by clinicians and the patient’s loved ones. The real challenge is to balance potential benefits with previously expressed wishes, if known (Beauchamp & Childress, 1994).
Care for dying patients with oral conditions consists of evaluating:
- Care that should be provided.
- Care that should not be provided.
- Care that can be considered optional.
Health-care providers, together with patients (and if patients desire their families), should review the treatment modalities available and discuss the benefits and risks. The patient’s choice must be respected unless the patient is not competent or there is no advanced directive. If the patient is not competent or there is no advanced directive, then the intervention would be considered obligatory and should be provided. For example, treatment measures to relieve distressing symptoms, such as pain associated with oral mucositis, should be provided.
Conversely, treatment should not be provided if:
- The competent patient refuses the treatment.
- The treatment is considered futile or clinically inappropriate — for example, if the treatment will not fulfill its purpose when the patient is imminently dying.
- The burden of treatment outweighs potential benefits.
Case study: Melissa had a very old porcelain-fused-to-metal crown on Tooth No. 9. One evening the facial portion of the crown fractured, exposing the metal underlayment. It was clear that the crown needed to be replaced. Melissa declined treatment and requested that the facial fracture be “glued” into place. A very caring dentist bonded the fracture into place so that Melissa would have a smile for the remainder of her life.
If a clinician makes the decision not to treat on the basis of his/her knowledge and experience and considers the burdens to outweigh the benefits, then he/she may be justified in not offering the treatment (Steinhauser et al. 2000).
One of the kindest interventions that hygienists perform is being an effective advocate for dying patients to achieve what the Institute of Medicine defines as a “decent and good death — one that is free from avoidable distress and suffering for patients, families, and caregivers; in general, in accord with patients’ and families’ wishes and reasonably consistent with clinical, cultural, and ethical standards.”
As Melissa’s life neared its conclusion, I found myself no longer focused on finding a solution to the disease that was taking her life. Finding a cure was not the solution. The cures that had been used on her had left her suffering with acute pain and the inability to even communicate with her loved ones because of oral pain. As daily care shifted from cure to comfort and from life extension to preserving dignity (Chochinov, 2002), palliative treatment became the focus. Comfort and quality of life became the determining factors in treatment choices.
Management of oral complications
Management of oral complications poses a number of challenges to family members and health-care providers. With the onset of pain and xerostomia, patients often become anorexic and ultimately cachectic. Communication, breathing, and simply swallowing can become difficult.
Oral pain: Both topical and systemic analgesic treatment approaches are needed for adequate pain relief. Topical approaches include single agents, such as lidocaine, benzydamine, and sucralfate, and combinations of agents, such as milk of magnesia and diphenhydramine (Epstein & Schubert, 2004).
Case study: Melissa utilized lidocaine in suspension for the burning syndrome that occurred. She did not like the sensation of numbness and got equal relief from the use of Rincinol from Sunstar America, a bio-adherent mucosal coating for oral soft tissue pain and aphthous ulcers. It is free from the drying effects of alcohol. It promotes healing and soothes tissue. It is fast acting and lasts up to four hours.
Xerostomia: The most common approach to treatment of dry mouth is palliative. Increased fluid intake, frequent sips of water, and humidification may alleviate some of the symptoms. Increasing fluid intake may be an issue for some end-of-life patients.
Any maneuver that will increase salivation will help relieve dry mouth symptoms. It is recognized that saliva can be stimulated by oral activity. Chewing will result in a robust increase in saliva output, but this may be difficult for end-of-life patients.
Salivation is also responsive to taste, particularly sour and bitter. The use of flavored gums and lozenges will increase secretory output transiently and remains a mainstay of palliative therapy in xerostomia cases. The combination of gustatory and masticatory stimulation can increase salivation for 30 to 60 minutes and relieve symptoms of oral dryness. Patients with diminished salivation may be instructed to use sugar-free gums, lozenges, candies, or mints containing xylitol for symptomatic relief of xerostomia, adjustment of pH, and reduction of bacteria. A very large number of agents — artificial salivas, oral rinses and gels, flavored mouthwashes, etc. — have been proposed to treat dry mouth. All these topical therapies likely provide some degree of transient salivary stimulation. There are few well-designed and controlled clinical trials that have tested these in a formal manner. Salese from Nuvora developed a time-release, essential oil-based product that lasts for an hour or more. It helps to maintain normal pH, inhibits bacteria, and is alcohol free.
In cases where salivary function is completely absent, saliva replacement products are the only available option. Patients should be instructed to use these at night for comfort and at meals to aid in chewing and swallowing (www.NIH.gov).
Case study: Melissa tried many products and was able to get relief from both Biotene products and GC America Dry Mouth. Products containing alcohol compounded the xerostomia and increased Melissa’s pain.
Mucositis: Currently, mucositis is treated by palliation and, to some extent, by prevention. Palliative methods include using topical rinses, behavioral modifications, and analgesics. The World Health Organization Pain Ladder is the most commonly used assessment in deciding whether or not to prescribe adjuvant, non-opioid, and/or opioid analgesics.
Many topical rinses are available. Some are simple solutions, such as viscous 2% lidocaine rinses or baking soda and saline solutions, while others are more of a cocktail solution, such as BAX (lidocaine, diphenhydramine, sorbitol, and Mylanta). Other investigative or mucoprotective adjuvant therapies include, but are not limited to, beta carotene, tocopherol, laser irradiation, and prophylactic brushing the oral mucosa with silver nitrate, misoprostol, leucovorin, systemic TGF and KGF, pentoxifylline, allopurinol mouthwash, systemic sucralfate, and GUM® chlorhexidine.
Gluconate Oral Rinse alcohol-free chlorhexidine gluconate (Sunstar America) and cryotherapy: Benzydamine mouthwash (Difflam®) can be helpful as a local anesthetic and can ease the discomfort caused by inflammation of the mucosa. Some hospitals prescribe mucilages to help ease soreness. Mucilages are unmedicated jellylike substances (lubricants). They are usually fruit flavored, and are kept in the fridge to be used as a mouth soother.
New products: Caphosol is an electrolyte solution made of sodium phosphate, calcium chloride, sodium chloride, and purified water. The solution must be mixed just before each dose to make sure the phosphate and calcium ions don’t separate and become ineffective. Once mixed, Caphosol soaks into the tissues of the tongue, gums, and hard and soft palate, restoring moisture into the cells and lubricating sores and scratchy areas. It is thought that the calcium ions help reduce inflammation and improve circulation as well as promote healing. The phosphate ions may help promote healing of mouth sores.
Behavioral modifications that can help reduce the incidence and severity of mucositis include:
- Avoiding hard, spicy, or hot foods that can trigger pain
- Frequent rinsing with saline or water with baking soda
- Sucking on ice chips or popsicles
Analgesic medications are almost always administered. Patients often decline the use of opioid medications because of side effects such as drowsiness, constipation, and decreased mental acuity.
Preventive measures taken to reduce the severity of mucositis include performing a full dental evaluation and addressing potential sites of oral infections such as grossly decayed teeth and periodontal disease. Ensuring that patients have good oral health prior to treatment helps to decrease the chance of systemic infections. Maintaining good oral hygiene during treatment through alcohol-free antibacterial mouth rinses, brushing/swabbing, and oral antifungal medications will decrease the bacterial load in the mouth, which can reduce the chance that ulcerative mucositis will become secondarily infected and/or cause systemic infections (www.NIH.gov).
Case study: Melissa had severe mucositis many times during her treatments. Though no product was able to reverse the effects of this condition, MI paste from GC America gave Melissa the most comfort. She used a pea-size amount on her fingertip to coat her gums. She would swish and swallow the product. She reported that this allowed her to eat and coated the lesions for a period of time.
Candida: The opportunistic disease Candida albicans is commonly seen in end-of-life patients. Clinically, the signs may be confused with radiation mucositis or other sources of infection. Candidiasis is usually painful. Treatment for candida can include prevention such as utilization of PerioBalance gum, acidophilus supplement rinse, xylitol-based products, or daily rinsing with alcohol-free chlorhexidine. Management is primarily with the use of antifungal drugs. Systemic administration (200 mg ketoconazole daily with food, or 100 mg fluconazole daily) is usually more effective for both response and compliance. Duration of treatment depends upon control of signs and recurrences, since complete elimination of candida from the oral flora usually does not occur. Topical administration entails the use of nystatin or clotrimazole tablets dissolved orally. Because of pain and dryness from mucositis, patients may experience difficulty in dissolving tablets topically. Suspensions are another alternative form of treatment, but often this is not as effective because of limited contact time between drug and fungus. Antiseptic mouth rinses similar to those used for caries control may be helpful, if tolerated. In addition, topical (such as Viscous Xylocaine®) or systemic analgesics may be required. Keeping the mouth moist is essential. There is always the possibility of developing fungal resistance, or the need of higher dosages when these agents are used for prolonged periods of time.
Gluconate Oral Rinse alcohol-free chlorhexidine from Sunstar America is recommended for cleaning oral cleaning devices such as the toothbrush and cleaning removable dental appliances. Use of the Philips Sonicare FlexCare toothbrush with UV light can limit cross contamination of the brushhead and decrease the risk of infection via the toothbrush.
Nutritional considerations: Malnutrition shows up first in the oral cavity. Angular cheilitis and oral ulcerations can all be the direct result of dietary insufficiency. Working with a nutritionist or dietician to coordinate nutritional needs with oral needs is vital. Dry mouth and oral lesions require special dietary considerations including high moisture and a low acidity diet. Knowing the patient’s oral condition, symptoms, and desires in this area will help determine dietary needs.
Case study: Melissa was able to enjoy nutrition up until the very end. Knowing the condition of her mouth and weekly conference calls with her dietitian and me maximized nutrition and minimized discomfort.
Oral care: When patients enter the last months, weeks, and days of their lives, the quality of their lives need to be understood from the patient’s subjective perspective in the context of the broader elements of their physical, functional, emotional, and social situations (Cella, 1994). Dying patients are generally weak and dependent on the care from others, often finding their ability to perform everyday functions impaired. Patients can often feel split between who they are and their illness.
When possible, promoting oral self-care rather than having caregivers perform all oral care or having others perform care can improve a patient’s sense of dignity and wholeness (Dirkson, 1995; Grey, 1994) and quality of life while dying. Adapting oral care to facilitate the patient being able to perform these tasks is essential to the process. Simplifying oral care and using aids to achieve the patient’s desired tasks can give patients a sense of accomplishment and self-worth.
Case study: Melissa’s choice in cleaning her teeth was utilizing the Sonicare FlexCare on a low power setting. The low setting was very gentle. The timer gave her an indication of the length of brushing time needed when she was unable to focus and gave her a sense of accomplishment. The ultraviolet light that housed and sanitized the unit between uses helped to prevent opportunistic infections. The size of the handle was an added benefit as it allowed her to grasp the brush with little difficulty. She was not able to do a fine finger grasp for flossing due to nerve damage resulting from chemotherapy, and interproximal care became very difficult for her. She chose to utilize the Water Pik. When getting out of bed became too difficult for her, she was still able to utilize the Water Pik by switching to the Ultra Cordless model and using it while leaning over a large mixing bowl. Knowing your patient’s habits, needs, and desires for oral care will help the dental hygienist adapt treatment and oral care during the end-of-life process. Melissa also utilized Biotene toothpaste with xylitol in the morning. This antibacterial, mild-tasting toothpaste was very good at treating xerostomia and did not burn when she had mucositis. In the evening, she utilized MI paste for help with sensitivity of her teeth that she often experienced during the night. This product helped immensely.
With a majority of people losing their lives to degenerative disease, the role of the dental hygienist is paramount in delivering comfort care and palliative treatment. What a gift it was for me as a registered dental hygienist in alternative practice to help make each precious day a little more comfortable and little higher quality for my dear friend. My career was forever changed. As a hospice hygienist I can make a difference in end-of-life care for many.
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