Palliative care

Nathan E. Goldstein and R. Sean Morrison

CASE 1 Holly Johnson (Part 1)

Holly Johnson is a 70-year-old woman who was diagnosed with stage III ovarian cancer 3 years ago. At that time, she received a total abdominal hysterectomy and bilateral salpingo-oophorectomy along with adjuvant chemotherapy. Six months ago on a routine follow-up appointment with her gynecologic oncologist, her lab results showed a rise in her CA 125 level, and she was diagnosed with a recurrence. Despite chemotherapy, her disease showed continued progression on a follow-up imaging study. She currently lives with her husband who is in good health. Although she was independent 8 months ago, her functional status has now deteriorated and she currently needs assistance with her activities of daily living. Her physicians no longer believe that she would benefit from further chemotherapy.

CASE 2 Pam Rodriguez (Part 1)

Pam Rodriguez is a 70-year-old woman with a medical history significant for osteoarthritis, advanced heart failure, mild cognitive impairment, and diabetes, who has been hospitalized for 6 days with pneumonia. This is her third hospitalization in the past year; the other two were for exacerbations of her heart failure. She is currently debilitated and cannot return to her home. Prior to this hospitalization, she was living in the community with her partner (who is also in failing health). She requires assistance with shopping, cleaning, and cooking. They have two adult sons who live in neighboring towns.

1. As a member of your hospital’s inpatient palliative care consult service, how would you approach the care of this patient and the patient from Case 1, Ms. Johnson?

2. How does palliative care for Ms. Johnson differ from that for Ms. Rodriguez?

What is palliative care?

At the turn of the twentieth century, the average life expectancy was 47,¹ and people usually died suddenly as the result of trauma or infection. Over the last 100 years, however, advances in medicine such as antibiotics, improvements in nutrition, and developments in public health and safety have led to a greatly increased longevity such that the average life expectancy in 2001 was 77 years.¹ As a consequence, the typical death is no longer a sudden or unexpected event. Rather, death today usually follows a lengthy period of chronic illness and functional dependency, such that chronic disease has become the leading cause of death. Evidence across all health care settings and disease categories demonstrates a high prevalence of physical, psychosocial, and financial suffering associated with serious illness and chronic disease.

Partly in response to these changes, the field of palliative care has arisen to address the needs of patients and families that have not been well met by traditional medical care. Erroneously, the phrase palliative care is sometimes conceived as care that should be provided at the end of life when treatments directed at life prolongation are no longer effective and death is imminent. In actuality, palliative care is interdisciplinary care focused on improving quality of life for patients with serious illness and their family caregivers.² It involves formal symptom assessment and treatment, aid with decision making regarding the benefits and burdens of various therapies, help in establishing goals of care, and collaborative and seamless transitions between models of care (hospital, home, nursing homes, and hospice) so as to provide an added layer of support to families and health care providers. Palliative care should be offered simultaneously with life-prolonging and curative therapies for persons living with serious illness (Figure 14-1).

Figure 14-1 Palliative care is offered simultaneously with life-prolonging and curative therapies for persons living with serious, complex, and advanced illness.

In this sense, the field of palliative care attempts to overcome the artificial dichotomy of cure versus comfort that has been established. A key contributor to this division of health care is the Medicare hospice benefit, which requires that patients forgo life-sustaining care to be able to receive hospice and must have a predictable prognosis of 6 months or less to live. This ignores the fact that the overwhelming majority of older adults living with serious illness require both life-prolonging and palliative treatments at the same time.

With this distinction in mind, it becomes clear that both patients presented in the opening case studies of this chapter can benefit from palliative care, but in different ways. Palliative care for Holly Johnson, with her advanced ovarian cancer and poor functional status, involves treating her symptoms (e.g., nausea, pain, depression), addressing her psychological and spiritual concerns, supporting her husband, and helping to arrange for her increasing care needs. The majority of this patient’s care occurs at home (with or without hospice) or in the hospital, and the period of functional debility is relatively brief (months). This differs from the care that Pam Rodriguez needs. Palliative care for this patient involves treating the primary disease process (her advanced heart failure); managing her multiple chronic medical conditions and comorbidities (diabetes, arthritis) and geriatric syndromes (cognitive impairment); assessing and treating the physical and psychological symptom distress associated with all of these medical issues; and establishing goals of care and treatment plans in the setting of an unpredictable prognosis. Additionally, the needs of her caregiver(s) are different from the needs of Holly Johnson’s caregiver(s). Ms. Johnson may have only a few months to live. The individuals caring for Ms. Rodriguez will most likely be her adult children who have their own families, work responsibilities, and medical conditions; these roles must be balanced with the months to years of personal care that they must provide to their aging parent. Like most elderly patients, both Ms. Johnson and Ms. Rodriguez can be expected to make multiple transitions across care settings (home, hospital, rehabilitation, long-term care),³ especially in the last months of life, and palliative care programs for older adults must ensure that care plans and patient goals are maintained from one setting to another.

In this sense, palliative care in the elderly is most appropriately centered on the identification and amelioration of functional and cognitive impairment, intervening to lessen caregiver burnout, and reducing the burden of symptoms. This is in contrast to typical care for patients in a hospice setting, for example, where management is focused on advanced terminal illness and its immediate manifestations. In response to the unique needs of older adults, palliative care is an integral part of geriatric medicine.

Palliative care is interdisciplinary care focused on the relief of suffering and achieving the best possible quality of life for patients with serious illness and their family caregivers. It is offered simultaneously with other treatments for persons with serious illness, as opposed to hospice, which is focused only on those who are actively dying and which requires patients to agree to forgo life-sustaining treatments.

CASE 1 Holly Johnson (Part 2)

On your initial visit with Holly Johnson, she describes pain that is not well controlled. You are able to elicit that her pain is a dull ache throughout her abdomen, which is occasionally punctuated by periods of sharp pain when she turns in bed or tries to transfer from the bed to chair. She rates her pain as a 7 out of 10, and the nurse on your interdisciplinary team informs you that she is no longer getting out of bed because of the pain. She is currently on a regimen of Tylenol #3 (acetaminophen 300 mg/codeine 30 mg) by mouth every 6 hours as needed. On review of her medication records, you note that she has consistently asked for it every 6 hours since admission. When you ask if she finds the current regimen acceptable, she states that she does not want anything stronger because she wants to save the “stronger medications for when I will really need them later.”

1. How would you change Ms. Johnson’s pain medications?

2. How would you address her concern about waiting to take pain medications until she “really” needs them?

CASE 2 Pam Rodriguez (Part 2)

On your initial visit with Pam Rodriguez, you ask if she has pain. She states that while she does not actually have pain, she does have an intermittent diffuse ache throughout her body. When you ask her to further characterize this discomfort, she cannot further elaborate on it but is able to rate it as mild to moderate. In addition, she complains of an electric, tingling sensation in both of her feet that she has had for several years. On review of her hospital medications, you see that she currently has an order for ibuprofen 400 mg by mouth every 4 hours as needed.

1. What types of pain is Ms. Rodriguez describing?

2. What changes would you suggest to her pain regimen?

Assessing and treating pain in older adults

Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage.⁴ Nearly 50% of severely ill hospitalized patients report that they have pain.⁵^,⁶ Pain in older patients may be poorly controlled because they may underreport pain or may have difficulty communicating, and physicians may undertreat pain because of concerns about side effects in older patients.⁷

Neuropathic pain results from injury to actual nerve fibers as a result of compression, infiltration, or degeneration of neurons in either the peripheral or central nervous system.⁸ Patients often describe this pain as burning, tingling, stabbing, or electrical, and they tend to experience it as severe and constant. Examples of neuropathic pain include diabetic neuropathy, pain related to spinal stenosis, and pain resulting from trigeminal neuralgia.

It is important to distinguish between the various types of pain because each is treated differently. Nociceptive pain is treated with, and often responds well to, traditional medications such as acetaminophen, nonsteroidal antiinflammatory drugs (NSAIDs), and opioids. Although neuropathic pain may respond to traditional analgesic agents, with this type of pain it is often necessary to use adjuvant agents such as tricyclic antidepressants, anticonvulsants, corticosteroids, or local anesthetic agents.9–12

Pain assessment

The treatment of pain begins with a thorough and complete assessment. The guiding principle of pain assessment is to ask patients about their pain and then believe their complaints. Several studies have shown that providers’ estimates of a patient’s pain severity are often lower than the patient’s self-report.¹³^,¹⁴ Assessment of pain involves multiple components, and practitioners must consider each in order to best understand the nature and character of a patient’s symptoms.

The first step of assessment is to inquire about the location of the pain as well as whether it radiates to any other part of the patient’s body. A description of the pain to determine if its origin is nociceptive, neuropathic, or some combination of both should be obtained as well as questions as to when the patient’s pain began; this information is required because chronic pain is often treated differently than acute pain. Additionally, it is important to ask what treatments (pharmacologic or otherwise) the patient has tried to relieve the pain as well as any factors that may exacerbate the pain. Temporal patterns of the patient’s pain should be understood. For example, joint pain that is relieved shortly after awakening is more likely to be from osteoarthritis than from rheumatoid arthritis. If patients do not freely offer information about these characteristics, then it is important to continue probing until the physician has a complete understanding of the nature of the patient’s pain and its associated factors. For a useful mnemonic device for assessing pain, see Box 14-1.

BOX 14-1 MNEMONIC DEVICE FOR ASSESSING PAIN

O = Onset—When did the pain begin?

P = Provokes/Palliates—What makes the pain worse or better?

Q = Quality—What is the nature of the pain?

R = Radiation—Does the pain go to any other portion of the body?

S = Severity—How bad is the pain? (0 to 10 scale; mild, moderate, severe)

T = Temporal—Is there a certain time of day when the pain is better or worse?

Patients should be asked to rate their pain to better understand its severity as well as to give a baseline assessment to determine changes in the level of pain after treatment.⁷ The same scale should be used over time in each patient, so as to best be able to reliably track changes in pain over time. Patients can be asked to rate their pain in either words (none, mild, moderate, severe) or using a numeric scale (0 to 10 where 0 is no pain and 10 is the worst pain experienced). They can also be shown a visual analog scale, where patients place a mark indicating their level of discomfort on a horizontal line representing a spectrum of pain (the leftmost portion of the line represents no pain, the rightmost, severe pain). Another visual scale often used includes a series of faces representing various states of emotion relating to the patient’s current level of pain.

In addition to the assessment principles outlined above, a crucial component of pain in older adults relates to its impact on function. The presence of symptoms that limit patients’ activities of daily living (ADLs)¹⁵ should trigger physicians to focus on the home environment and may signal the need for additional home care services. In cases where the patient cannot provide a thorough history because of conditions such as dementia or aphasia, this information can be obtained from nursing staff and the patient’s family.⁷ The clinician’s physical examination should be used to confirm any suspicion generated during the history taking. Conditions to note include muscle spasm, gait impairment, abnormal joint alignments, and changes in skin color or integrity—to name just a few.¹⁶

Physicians may have particular difficulty in assessing pain in older individuals for several reasons. Patients may have physiologic barriers to reporting pain such as difficulties with hearing or vision as well as cognitive impairment. These difficulties are not insurmountable, however. Assistive listening devices or visual scales can be used to facilitate pain assessment in patients with hearing loss. Patients with poor vision should be encouraged to express their pain using either a numerical or verbal scale. For patients with both visual and hearing impairments, techniques such as pointing and gesturing are often effective.

Clinicians may assume that they cannot assess pain in individuals with cognitive impairment, but this is often not the case.¹⁷ Patients with cognitive impairment or aphasia are often able to give basic information if questions are asked in a yes/no format. In addition, physicians can use signs such as facial expressions (grimacing or frowning), diaphoresis, and changes in vocal patterns (e.g., increased moaning or changes in pitch) as signs that a patient may be in distress. Clinicians can also ask family members and paid caregivers to report their impressions of the patient’s pain as well. Unfortunately, clinical studies have shown that patients’ and family members’ ratings of pain are not always well correlated, with family members often underestimating the patient’s pain intensity.^18–20 With this in mind, however, clinicians may be able to begin with the family’s assessment of the cognitively impaired patient and add to this the other visual and diagnostic clues discussed above to better estimate a patient’s level of pain.

Older patients’ fear of addiction has also been shown to be one of many barriers to effective pain management.¹⁶^,²¹ One way to counteract this barrier is to educate patients and their families about addiction and how it differs from tolerance and dependence.

Tolerance is a pharmacologic phenomenon that refers to diminished analgesic effect of a constant dose of a medication after exposure over time.¹⁶ Tolerance routinely develops after patients receive opioid medications, and relates both to the analgesic properties of the medication (i.e., patients may need more of a medication over time to obtain the same analgesic effect) and to its side effects (e.g., patients will develop tolerance to the sedative effect after a short period of time). Typically when patients with cancer or other systemic diseases begin to need increasing doses of a medication, it is a result of progression of the underlying disease rather than the development of tolerance.

Dependence refers to a biological phenomenon whereupon patients may develop withdrawal symptoms once the medication is discontinued.⁷ For example, patients who have been on chronic opioid therapy may experience diarrhea and a dramatic increase in their level of pain if the medication is abruptly halted. Addiction refers to continued use and seeking of a medication despite harm to self and others. This phenomenon is rarely seen in patients who are treated for chronic pain, and is seen no more often in patients with cancer than in the general population.²² One way to avoid this confusion is to avoid the use of terms such as narcotics and drugs because these words may be associated with societal stigmas. Clinicians must differentiate addiction from pseudoaddiction, a phenomenon in which patients exhibit drug-seeking behavior because of undertreatment of their pain. This is an iatrogenic phenomenon, and it will resolve itself when patients are given an adequate medication regimen with appropriate dosing intervals.²³