Palliation Issues in LTC

Part 1 of a 2-part series on palliative & end-of-life issues relevant to LTC

by Jane Jerrard

PHOENIX--Professionals caring for frail elders know that the percentage of patients dying at home or in long-term care facilities increases as the percentage dying in hospitals decreases. These patients may experience physical, emotional, and spiritual suffering for months--or even years--before they enter the active phase of dying from their illness.

"The optimal care of long-term care patients with chronic and progressive illnesses requires all members of the multidisciplinary team to be proficient in the assessment and relief of suffering," said William Smucker, MD, CMD. "This type of whole-person care for patients whose diseases are not responsive to curative treatment is also called palliative care."

In his presentation "End of Life/Palliative Care, Part 1," Dr. Smucker reviewed AMDA's End-of-Life Curriculum, which creates a foundation of knowledge for physicians and other long-term care professionals motivated to improve palliative and end-of-life care. It demonstrates how to provide organizational leadership, promote education, develop best practice guidelines, and set standards for processes and outcomes in end-of-life care.

The first part of the curriculum, which we cover herein, addresses pain management, symptom relief, communication skills, and ethical considerations for managing patients at the end of life.

Palliative Pain Management

End-of-life patients suffer several types of pain, including acute, chronic, non-malignant, and cancer pain. There is no decrease in sensitivity to pain with aging. Multiple studies show that a high percentage of nursing home residents suffer daily pain of some type, and under-treated pain can lead to physiological and psychological impairment, psychosocial deterioration, and progressive physical deconditioning.

Several pain guidelines exist, including AMDA's Clinical Practice Guideline Chronic Pain Management in the Long-Term Care Setting, and contain material directly applicable to long-term care professionals.

Monitoring and treating pain requires an interdisciplinary care team that includes the patient and their family, direct caregivers, nursing supervisors, therapists, the social worker, a nutritionist, consulting pharmacist, and the physician. A comprehensive approach to pain management must include:

• Educating staff, patient, and family;
• Screening, assessment, and reassessment;
• Communicating;
• Planning care;
• Managing and intervention; and
• Monitoring and continuous quality improvement.

Barriers to pain assessment may include psychological and physical co-morbidities, spiritual or cultural beliefs, and language. Also, some elderly patients view pain as a sign of weakness, punishment for the past, or part of aging. As such, they may not communicate their pain issues to caregivers.

When evaluating your patient's pain, begin with a patient interview, intervention history, and physical exam. Include a functional assessment and psychological evaluation as well. For dementia patients, you can assess sleep disorders, functional loss, and agitation. Assess their objective symptoms, including tachycardia, pallor, and affective responses such as grimaces.

AMDA's pain CPG suggests you "start low, go slow" on treating pain in elderly patients, taking the least invasive route and reassessing frequently. Use nonpharmacological treatments, including cognitive therapies, biofeedback, and behavior therapy. Consider topical analgesics including counterirritants and capsaicin cream. As for pharmacological treatments, prescribe a medication schedule rather than PRN, or as-needed, dosing. Consider the WHO 3-Step Ladder.

AMDA's pain CPG recommends avoiding the following NSAIDs: indomethacin, meclofenamate, piroxicam, and tolmetin, as well as opioids meperidine, propoxyphene, pentazocine, and nalbuphine. Also inappropriate for the elderly are phenylbutazone, trimethylbenzamide, flurazepam, amitriptyline, long-acting benzodiazepines, muscle relaxants, and anticholinergics.

If a patient experiences mild to moderate pain, consider a trial with acetaminophen as initial therapy. Take caution, though, in administering acetaminophen to patients who take warfarin or who have liver disease or alcohol abuse problems. Studies show that patients prefer NSAIDs to acetaminophen, which provides inadequate relief for many. A combination of acetaminophen and tramadol provides greater pain relief than either by itself and shows a faster onset of relief than tramadol alone. There are also reduced adverse drug reactions with this combination.

AMDA guidelines on oral immediate-release opioid dosing call for a dose every four hours, adjusted daily. Dosage can be adjusted 25% to 50% for mild or moderate pain, 50% to 100% for severe or uncontrolled pain. This can be adjusted more quickly for severe uncontrolled pain. For extended-release oral opioid dosing, be careful with compliance and adherence. Dosage is product-specific, but typically given every eight, 12, or 24 hours. Patients should not crush or chew the tablets, and time-release granules can be flushed down feeding tubes. Common adverse effects of opioids may include constipation, dry mouth, nausea or vomiting, sedation, and sweating.

Manage Pain Symptoms

Many of the common symptoms requiring aggressive palliation are outlined below. Caregivers should collect data on the severity, duration, time of onset, and quality of each symptom, as well as details on what aggravates and relieves the symptom. Data should also include the effect of previous treatments, the symptom's effects on function, mood, sleep, and relationships, as well as a physical exam. Consider nonpharmacological interventions, which can work synergistically with medications. Also, frequently repeat the full assessment process.

To maximize your chances of success in suppressing symptoms, encourage patient and family control of symptoms by involving them in decisions; try to anticipate and prevent symptoms; and elicit help from specialists, therapists, nutritionists, and other members of hospice staff. Note that your risk of failure to manage symptoms is increased when the patient has cognitive impairment, when language barriers exist between patient and caregiver, and when the patient is a minority.

To help manage symptoms, physicians should help patients, their families, and staff recognize and name their pain symptoms. Physicians must understand the standards for symptom assessment and management, and know what's reasonable to expect of their staff, hospice team, chaplains, and so on.

Dyspnea, a common symptom at all stages of dying, may limit your patient's activity and quality of life. It is strongly associated with anxiety, and each symptom may exacerbate the other. Dyspnea may be caused by pneumonia, bronchospasm, chronic obstructive pulmonary disease, mucus plugs, severe anemia, tumor invasion, and several other factors.

Assess dyspnea as part of symptom history with a physical exam and workup based on the benefits and burdens, as well as the patient's prognosis and preferences. Find out what works for the individual. It may be as simple as positioning, using a fan or open window, or trying relaxation techniques. You can suggest a trial of oxygen based on symptom relief, but avoid suctioning with most patients because it can be distressing.

Opioids remain the treatment of choice for dyspnea. Morphine sulfate is the most studied and versatile. Other medications to consider include benzodiazepines for anxiety; bronchodilators for wheezing; chlorpromazine; as well as steroids, diuretics, and anticoagulants.

To suppress coughing, options include guaifenesin with dextromethorphan, codeine or hydrocodone, and chlorpromazine. Anticholinergics have the added benefit of decreasing gastrointestinal secretions and acidity, and are useful in bowel obstruction. Glycopyrrolate can be used to dry secretions. Because it's the only agent that does not cross the blood-brain barrier it's the treatment of choice for frail patients.

Oral problems: Physicians should perform oral exams frequently to check for infections. Oral care should be administered at least daily for conscious patients, and at least three or four times a day for unconscious ones. This is a wonderful way to involve families in patient care. For details on oral care routines, visit the University of Ottawa Institute of Palliative Care Web site (www.pallcare.org/educate).

For dry mouth, try any of the following: frequent sips of favorite liquids, popsicles, frozen fruit, tonic water, hard candies, or artificial saliva. If the patient is unconscious, swab the mouth every one or two hours with water or spray with an atomizer. You can also apply Vaseline to the lips and front teeth.

Nausea: Opioids and other factors often cause nausea, which can be treated a number of ways. Prochlorperazine is a potent antidopaminergic, weak antihistamine, and anticholinergic agent. Haloperidol is a potent antidopaminergic agent. Promethazine can be useful for vertigo and gastroenteritis, but is not useful for opioid-related nausea. Scopolamine is a potent, pure anticholinergic agent.

Nonpharmacological interventions for nausea include applying a cool, damp cloth to the forehead, neck, and wrists; decreasing noxious stimuli including odors and noise; limiting fluids with foods; feeding only bland, cool, or room-temperature foods; practicing relaxation techniques; and utilizing acupuncture or acupressure.

Constipation: Check the rectum for impaction, which can cause agitation, delirium, vomiting, pain, anorexia, urinary retention, or new onset of incontinence. Oozing diarrhea may also be a sign of impaction.

To prevent constipation, institute scheduled toileting and have the patient sit up if possible. Maintain evacuation for two to three days, and implement a system for documentation, assessment, and early intervention. Fiber may help, but will also harm in cases of dehydration and poor motility. Try increasing water intake or keep fluid in the gut with sorbitol.

Chronic wounds: The underlying etiology of nonhealing chronic wounds is that they don't respond to treatment, or the demands of treatment are beyond the patient's endurance or stamina. If a wound won't close, communicate it to other staff and document it.

Palliative care goals for chronic wounds should complement curative goals and focus on quality-of-life issues. Focus on stabilizing the wound, reducing pain and bacterial burden, reducing exudates, and eliminating odor.

Agitation/anxiety: When assessing agitation and anxiety at end of life, keep an open mind and try to understand the behavior. Agitation may have physical and psychological causes, such as urinary retention or delirium. These symptoms are often a sign of pain in the cognitively impaired. Managing agitation and anxiety likely requires multifactorial interventions and may include environmental modifications, psychological support, and medications such as neuroleptics for delirium, antidepressants, benzodiazepines for anxiety, and morphine for dyspnea or pain.

Fatigue: This may present prominently in cognitively intact patients. Fatigue can be associated with depression and should be assessed in relation to functional status and mood. Consider occupational therapy or physical therapy with the goal of improving quality of life versus function. You might also treat contributory factors such as anemia or electrolyte imbalance; however, you should warn the patient and family to anticipate increased fatigue as time passes.

Depression: The usual symptoms and signs of depression may be confused with or masked by symptoms and signs of disease, or masked by cognitive impairment. To manage depression, attend to what is distressing the patient, such as pain, other symptoms, or social issues. Your facility should provide social, emotional, and spiritual support as well as encourage any appropriate activities that involve others. Consider a psychology referral and/or antidepressants.

Spiritual pain: Clinicians can play a powerful role in eliciting and acknowledging their patients' spiritual concerns; however, don't feel compelled to address those concerns yourself. Request interventions that include spiritual or religious counseling, volunteers, diverse scriptures, and sacred objects and music.

Communication

In discussing end of life with patients and their families, it's important to know why communicating difficult news is important. Most patients and families want to know what to expect during the dying process and explaining what will happen strengthens the physician-patient/family relationship. It also fosters collaboration and permits planning and coping behaviors in patients and families. You can follow a six-step protocol for delivering difficult news:

Step 1: Set up a meeting specifically to discuss a patient's end of life with the person and their family members. Plan in advance what you'll say about their condition and their future. Create a conducive environment for the meeting. Choose a quiet, private place where you'll be undisturbed, and allot adequate time to answer questions.

Consider the number of people in the meeting and how informed they are going into the meeting. Determine the patient's decision-making capacity and who the patient would like to have present for the conversation. If the patient is cognitively impaired and has not chosen a durable power of health-care attorney, contact their next of kin or a known family member and invite them to meet with you.

Step 2: Establish what the patient and family already know and assess their ability to comprehend new information. Reschedule the conversation if they are emotionally unprepared to talk about end of life.

Step 3: Find out how much they want to know. If the family has indicated that they don't want the patient to be told they are dying, explain the benefits of being informed and propose talking to the patient together.

Step 4: Promote dialogue by determining previous experiences. Avoid using medical jargon or euphemisms, and use long periods of silence frequently. Check for the patient's and family's understanding--you can observe their facial expressions for comprehension.

Step 5: Be prepared for outbursts of strong emotion or a broad range of reactions. This is a perfect opportunity to observe family dynamics, which may be useful in the future.

Step 6: Plan for next steps. Discuss potential sources of support; affirm your continued support; provide written information; and assess the patient before leaving.

When language is a barrier, use a skilled translator or telephone translation services. Avoid using a family member as a primary translator, which may confuse the translator, overwhelm their familiarity with medical terms, or cause them to modify news to protect the patient.

Be conscious of intercultural dynamics. Common misunderstandings arise from a cultural resistance to discussing death, historical oppression leading to distrust, and cultural, social, economic, educational, and linguistic differences with health-care providers.

In providing palliative care to a patient near the end of their life, you may be tempted to soften difficult news. However, false hope deflects from other important issues such as final goodbyes, finishing projects, and reflecting on life. It's better to help the patient and family achieve realistic goals.

Also, patients and families are often waiting for providers' permission to let go. If a patient asks you, "How much time do I have?" avoid precise answers, but give a range of weeks or months. The needs of the patient and their family may vary, but some will want time to plan. Others seek reassurance and don't want details.

Ethics

Every physician in long-term care faces fundamental ethical dilemmas. Basic principles of medical ethics include:

• No person's interests should be sacrificed as a means to an end.
• Everyone has a right to self-governance, self-direction, and freedom.
• Physicians and other caregivers should do nothing to, for, or concerning a patient against their will.
• You have an obligation to keep promises and contracts with patients, and to protect their privacy.
• One should not do harm, should intend to prevent harm, and should protect those we care for.
• One should act to do good and advocate for the good of the patient.
• One should determine a just or fair solution for patients, and consider what is fair in access to care and expectations of care.

Conclusion

Caring for end-of-life patients calls for assessing and relieving pain and discomfort. Physicians and other caregivers must concentrate on targeting pain and other discomforting symptoms in each patient, and provide relief through appropriate pharmacological and non-pharmacological treatments.

Beyond physical care, professionals providing palliation are also responsible for communicating with the patient and their family, informing them of treatments, and especially providing expectations for their illness or condition. Finally, physicians working with end-of-life patients face ethical dilemmas and must adhere to basic principles of medical ethics.

The second article on end-of-life care will appear in the September issue of Caring.

Contributing Writer Jane Jerrard is based in Chicago.

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