Thomas, Scott A. MSN, RN, NP-C
Dame Cicely Saunders first coined the term “total pain” in the late 1960s after her work in caring for the terminally ill at St. Christopher's hospice in London (Saunders et al., 1995). Saunders “total pain” concept has been well accepted in the palliative care community as a tool and it involves components of human functioning, such as behavior, social relations, personality, and mood, and each component is specific to each individual based on their situation. The International Association for the Study of Pain (2012) defines pain as an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.
According to Cavalieri (2002), elderly populations are more susceptible to undertreated and ineffective pain management that can significantly impact their quality of life, leading to depression, social isolation, and a loss of function. Using a holistic approach and incorporating principles of pain management, caregivers can provide good pain management for the elderly (Cavalieri, 2002). Placing the elderly patient and their family in the center, interdisciplinary team members—including physicians, nurses, home health aides, social workers, spiritual and bereavement counselors, volunteers, and therapists—must work collaboratively to provide quality and compassionate care (National Hospice and Palliative Care Organization [NHPCO], 2011).
The aging of the baby boomers has increased the need for hospice care according to NHPCO (2011). Hospice in the United States cared for more than 1.58 million people in 2010, with 82.7% being age 65 years or older and 35.6% having primary admission diagnosis of cancer, and hospice admissions have increased from 1.3 million in 2006 to more than 1.58 million in 2010 (NHPCO, 2011).
According to Oliver et al. (2008), pain is reported in 76% to 90% of hospice patients. One end result outcome measure for hospice care is pain relief within 48 hours of admission, and ultimately a sense of being at least relatively comfortable through the dying process (NHPCO, 2011). Of the 1.58 million hospice patients being treated for pain, NHPCO (2011) reports that 72.5% rate their pain at a comfortable level within 48 hours of assessment compared with 11.3% who reported no change in comfort.
There are many barriers and challenges to providing effective and safe pain management for hospice patients, and this article raises awareness of these challenges. Inadequate communication between patients, families, and healthcare providers poses challenges to the healthcare team providing palliative care (SUPPORT Principal Investigators, 1995). According to Oliver et al. (2008), when patients are cared for by family caregivers, challenges arise in pain and symptom management; these challenges are adequate pain assessment, uncertainty of pain medications and reluctance to administer, noncompliance with pain medicine regimen, negative past experiences, caregiver strain, and the lack of caregiver and patient education regarding pain management. Effective pain management and/or a pain-free death are the primary goals of the hospice team for the cancer patient (Payne et al., 1996).
Sally: A Case Study
Sally is a 65-year-old homemaker admitted to home hospice with a diagnosis of end-stage chronic obstructive pulmonary disease and Stage III melanoma with subclass Stage IIIC with characteristics (T1–4bN3MO). Ti-4b: the tumor, which is located in the cutaneous tissue of her right scapula, is ulcerated and ranges in size from less than 1.0 mm to more than 4.0 mm thick; N3: metastasis in four or more lymph nodes, the presence of matted lymph nodes, or the combination of in-transit/satellite metastases and metastatic lymph nodes; M0: the tumor has not spread to sites distant from the primary tumor. Because of numerous accidental and near-fatal overdoses while on pain medications due to either intoxication or increased cognitive impairment, Sally's admission to hospice was intended to provide her with safe and compassionate care and effective pain management. She had been given a projected life expectancy of 4 months by her oncologist.
Sally's past medical history includes melanoma, chronic obstructive pulmonary disease, hypertension, myocardial infarction, sarcoidosis, depression, osteoporosis, degenerative bone disease, and mild short-term memory deficits. Socially, she is a 40-pack-per-year smoker and denies alcohol or illicit drug use. In 2000, Sally was diagnosed with Stage III melanoma and was treated with interferon and radiation therapy, two wide local incision surgeries, and three lymph node dissections. Her cancer remained in remission for 11 years, and after a routine yearly positron emission tomography scan, findings suggest evidence of Stage IIIC reemergence. Sally had experienced pain related to her cancer treatment and degenerative bone complications that warranted chronic use of narcotics prescribed by her pain specialist doctor.
Sally's medications on admission to hospice included fentanyl citrate (400μg Actiq transmucosal four times daily, and 50 μg transdermal patch every 72 hours) and oxycodone hydrochloride 20 mg by mouth (PO) three times daily for pain, lorazepam 1 mg PO two times daily for anxiety, ondansetron 8 mg PO as needed for nausea, fluoxetine hydrochloride 20 mg PO daily for depression, carvedilol 25 mg PO daily, clonidine 0.2 mg PO two times daily, and lisinopril 20 mg PO daily for blood pressure control. Sally's husband passed away in 2008, and her son Jack has been her primary caregiver in her home. Jack lives with his family and was seeing his mother three to four times per week to provide care and set up her weekly medications.
At Sally's initial admission to hospice, she was able to ambulate with a walker, feed herself, maintain an adequate level of activities of daily living, and was reported to be in good spirits. Soon after, Sally's health declined rapidly, which required fulltime hospice care from the hospice and family.
Sally rated her pain using the numeric rating scale (NRS) as “7 out of 10 all the time, and 9 to 10 out of 10 most of the time” with episodic bouts of nausea. Her pain specialist doctor and the medical director of hospice managed Sally's pain medication regimen. Sally's pain had confined her to bed with a self-report of pain at “10-plus” at times. To improve Sally's comfort, the pain doctor prescribed the addition of morphine sublingual 5 to 10 mg every 2 hours as needed, and an increase of the oxycodone hydrochloride to 80 mg PO three times a day. Within 5 days of admission to hospice, the addition of morphine and increase in oxycodone hydrochloride dosage improved physical mobility and function, decreased her episodes of nausea, improved her cognitive ability, and resulted in Sally's self-rating of pain at a “4, which is comfortable for me.” Sally passed peacefully in her sleep within 2 weeks of hospice admission.
Challenges in Assessing Pain in Older Adults
Assessment of pain in the elderly can pose many challenges for the caregiver (Cavalieri, 2002). Some challenges are the presence of depression, cognitive or sensory impairment, existing comorbidities, increased sensitivity to medications, drugwdrug and drug–disease interactions, and polypharmacy (Cavalieri, 2002; Ferrell et al., 1994; Herr et al., 2010). According to Kane et al. (2004), the elderly suffer disproportionately from chronic painful conditions and may have sensory or cognitive impairments complicating pain assessment.
Hemming and Maher (2005) suggest family and patients overreport a patient's pain experience, whereas healthcare professionals may underreport a patient's pain among providers. Inadequate communication between patients, families, and healthcare professionals regarding patients' pain management has also been reported to be common. Hemming and Maher (2005) conclude cancer pain in advanced disease presents challenges to healthcare professionals, and the need for accurate and comprehensive assessment of the total pain experience, implementation of holistic interventions, and listening to the patient are all necessary to improve patient outcomes. Pain is a subjective experience and clinicians must rely on the patient's perception of their pain (Ruder, 2010).
Effective Pain Management Strategies
The development of a healthcare culture conducive to promoting effective care through implementation of interdisciplinary team meetings on specific patient symptom management can provide the healthcare team a forum to examine their values and beliefs on pain management, and enhance the understanding of each other's roles in supporting the patients in pain (Middleton-Green, 2008). If the patient can communicate effectively and has mild-to-moderate cognitive impairment, the use of a standardized pain rating scale such as the NRS, verbal descriptor scale, vertically oriented pain thermometer, Wong–Baker FACE Scale, and Pain Map may be useful in measuring pain (Ruder, 2010).
For patients who lack the cognitive ability to use standardized pain rating scales to express their pain experience, the clinician must rely on observing patient behaviors for signs and symptoms of pain. Use of the American Geriatrics Society Clinical Practice Guideline: Pharmacological Management of Persistent Pain in Older Persons (2002) can assist the clinician in identifying pain-precipitating behaviors such as mental status changes—increased confusion and irritability, changes in daily activities—refusing to eat and increased sleep patterns, abnormal body movements—rigidity, pacing, and guarding, inappropriate facial grimacing, changes in social interactions—aggression or withdrawn, and verbalizations like moaning, groaning, and calling out.
Ruder (2010) suggests the use of the Pain Assessment in Advanced Dementia Scale or Abbey Pain Scale can be used for those with advanced cognitive to severe cognitive and communication impairment. When assessing whether the clinician's treatment is adequate in controlling a cognitively impaired patient's pain level, the clinician may consider using Bouvette et al. (2002) pain and symptom assessment record (PSAR) that examines interrelated symptoms such as nausea, vomiting, constipation, and fatigue and sedation levels.
The World Health Organization (WHO) (2012) suggests that patients with advanced cancer often receive the only realistic treatment option—which is pain relief and palliative care. The use of the WHO pain ladder for cancer pain is an inexpensive and effective method for relieving cancer pain in about 80% to 90% of patients (WHO, 2012). The WHO's pain ladder is a three-step “ladder” approach for cancer pain relief. WHO stages the ladder as follows: the bottom level includes oral administration of nonopioid pain relief from aspirin and paracetamol with nonsteroidal anti-inflammatory drugs; the second level is to administer mild opioids like codeine; finally the third level, if necessary, is the use of strong opioids such as morphine and fentanyl given PO, intramuscular, transmucosal, sublingual, subcutaneous, rectal, and intranasal, along with adjuvant drugs (Hemming & Maher, 2005). Additionally, WHO (2012) suggests administering pain medications “by the clock,” every 3 to 6 hours rather than as needed to maintain adequate and effective pain control.
Integrative Therapies in Pain Management
Johnson and O'Brien's (2009) research and Prommer and Ficek (2012) suggest integrative therapies to improve overall well-being and improved analgesia. Many of these nonpharmacologic and alternate therapies are rapidly growing practice standards in hospice and palliative care settings (Johnson & O'Brien, 2009). These may include massage, Reiki, music, aromatherapy, guided imagery, relaxation techniques, hypnosis, cognitive behavioral techniques, and biofeedback (Johnson & O'Brien, 2009; Prommer & Ficek, 2012). Effectively managing patients in pain, healthcare professionals need to understand the nature of the pain from a physical perspective, the factors that affect pain intensity, how patients have adapted to cope with their pain, and what the patient requests of the clinician after the patient can no longer tolerate or self-manage their pain (Hemming & Maher, 2005).
The gold standard for assessing symptoms of pain is the patient self-report (Portenoy & Lesage, 1999). A decrease in the self-report pain level, lower level of anxiety, and lessened nausea are signs that the patients are amenable to pain-relieving therapies (Lasheen et al., 2009). When improved physical function is evident, adequate pain-relief measures through pharmacologic or nonpharmacologic—alternate and complimentary therapies—are effective (Brown et al., 2011).
Sparber et al. (2000), in a study of a convenience sample of 100 English-speaking, adult patients with cancer admitted to intramural clinical trials, found research on patient reports using integrative therapies for pain facilitated better coping skills, a greater sense of control, an improved quality of life, and increased options for controlling side effects related to treatments.
Sally's quality of life and comfort improved during her last days through the diligence and pain management strategies of the hospice care team. Could Sally have benefited with the integration of alternate and holistic therapies?
After Sally's death, a clinician and family conference was conducted. The clinicians acknowledged use of WHO's pain ladder, NRS, AGS (2002) guidelines, and pain and symptom assessment record as tools to effectively manage Sally's pain and comfort. These tools were highly effective pain management strategies in Sally's case as evidenced by her self-report of “four, which is comfortable for me” from a 7 to 10 out of 10, improved physical mobility and function, and decreased episodes of nausea.
Pain remains a problem for patients with cancer and their families. Sally's pain was a unique and individual experience that was effectively managed by the hospice care team through the use of pain assessment tools and strategies. Hospice care can provide patients and their loved ones individualized expert medical advice, pain and symptom management, and emotional and spiritual support.
Age-related changes, cognitive and sensory impairment, comorbidities, increased sensitivity to medications, and poly-pharmacy may pose challenges for the clinician when caring for older adults with cancer. It is essential for clinicians to place the patient in the center of the care model and to include their family and other providers when choosing pain/symptom management options. Open communications with family conferences and listening to the patients can be effective means to improve the patient's pain level and comfort.
Although challenging, adequate assessment and treatment of pain is essential for the clinician to improve the quality of life of patients and family caregivers in pain at the end of life. During a patient's last days, the clinician can improve a patient's pain level and comfort by choosing the best assessment tool, implementing effective integrative and pharmacologic regimens, and educating patient and caregivers on pain management.
Because of the increasing age and declining health of the baby boomers, the need for effective and adequate pain management strategies is warranted. Hospice caregivers and other multidisciplinary healthcare providers are called to action to further research in interdisciplinary pain assessment tools and strategies to benefit the care of this entire generation.
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