Keywords

Introduction

Palliative care, and the medical subspecialty of palliative medicine , is a specialized medical care for people living with serious illness. It focuses on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of palliative care doctors, nurses, social workers, and others who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment . This definition, from the Center to Advance Palliative Care [1], is helpful to define the goals, providers, and scope of palliative care—it is impressively broad! It is important to clarify that hospice is specialized form of palliative care for patients with a limited life expectancy (usually 6 months or less) provided by a multidisciplinary team-based agency or organization; hospice always includes the provision of palliative care, but palliative applies to a broader range of illnesses, disease trajectories, and prognoses not included in hospice. Palliative care is recognized as an increasingly important component of medical care for cancer that can improve quality of life , extend survival in some cases, and help to tailor patients’ medical care to their individual beliefs and values, termed goal-concordant care.

Palliative care is commonly understood to be delivered at a specialty level by fellowship-trained, board-certified practitioners in a hospital or hospice setting; however, the clear majority of this work is “primary palliative care ” delivered by surgeons, primary care physicians, hospitalists, and specialists as an integral part of their existing practice. Basic management of pain, depression, anxiety, and other symptoms as well as discussing prognosis, goals of care, suffering, and code status are primary palliative care tasks common to all physicians [2]. Specialty-level palliative care includes management of complex and refractory symptoms, existential distress, complicating psychiatric illness or substance abuse, and conflicts regarding goals of care.

The initial imperative in promoting quality of life is expert symptom management , particularly in cancer, when symptoms can be rapid and severe and herald a significant worsening of disease. Uncontrolled symptoms represent immediate and compelling suffering caused by both disease and treatment; little progress can be made without addressing them directly, beginning at the first encounter. In cancer patients, active symptoms drive anxiety about progressing or recurrent disease, impede understanding and coping, and diminish quality of life. Once symptoms are improved or relieved—sometimes requiring multiple interventions over several encounters—the more cerebral and existential palliative care issues of survival, prognosis, and personhood can be addressed.

This chapter begins with a review of common ambulatory palliative care symptom management followed by sections on the aims and potential of ambulatory palliative care and the sophisticated communication skills needed to achieve these aims. Several sources [3,4,5] on palliative care symptom management are included in the reference section for further study. There are aspects of palliative care that are specific to surgeons, such as communication about high-risk procedures, placing procedure outcomes in the context of patient clinical condition and future goals, and interventions in exclusively surgical populations; several of these are highlighted in the communication section below.

Symptom Management

Pain

Pain is the physical sensation of actual or imagined tissue injury—(“imagined” referring to neuropathic mechanisms where pain is present without a precipitating injury). For patients with cancer, pain is a common experience of disease, and it is nearly universal in recurrent or advanced disease. Patients in moderate or severe pain are unable to appreciate quality of life , they are distracted and diminished by the symptom, and often their discouragement leads to wishes for an early death for relief. As patients contemplate worsening disease and the dying process, pain is often a strong central fear. Perceptions and meaning of pain and cultural and social ideas about pain treatment influence the experience for patients, providers, and families alike. When pain is accurately diagnosed and expertly treated, quality of life can be improved and the patient can be sustainably cared for, particularly by family members at home. Barriers to effective pain relief are many, from logistic, financial, and regulatory challenges as well as social, emotional, and religious beliefs complicating diagnosis and treatment. Women, minorities, poor, aged, and nursing home groups are at increased risk of ineffective pain relief treatment, and maladaptive behaviors and attitudes commonly lead to undertreatment and conflict.

Pain: Assessment

Assessment of pain includes a careful history, review of systems, physical examination, and collection of radiographic and laboratory data. Complete characterization of pain requires elucidation of the mechanism (somatic, visceral, or neuropathic), severity, location, referral pattern, timing, and aggravating and relieving features. Attributing symptoms to recognized pain syndromes, such as burning mouth syndrome , bone pain from lytic metastases , or chemotherapy-induced peripheral neuropathy , allow for specific and effective treatment strategies . The cancer patient with new or unexplained pain should always raise the question of disease spread or complications or even a new diagnosis. Treating pain empirically, without understanding cause and contributing factors, is regrettably common and contributes to delay in diagnosis, ineffective treatment, and overuse of pain medications.

Ambulatory palliative care requires expertise with common analgesics in oral, sublingual, and topical forms as well as skills in patient education and risk management. For cancer pain , treatment is rarely a single prescription for an as-needed analgesic, and requires a practice with regular follow-up visits with monitoring and compliance functions in place to assure safe and effective use.

Pain: Opioid Risk Management and Patient Education

As opioids are considered first-line therapy for the management of moderate-to-severe cancer pain, it is essential that providers be familiar with the known risks of opioids and that they implement a “universal precaution strategy” to manage patients safely and effectively [6]. Opioid therapy begins with risk assessment/stratification and subsequent implementation of management strategies proportionate to patient’s individual risk. Validated screening tools, like the Opioid Risk Tool [7] (ORT) or the Revised Screener and Opioid Assessment for Patients in Pain [8] (SOAPP-R) , can help identify patients at risk for developing opioid addiction or aberrant drug-taking behaviors, and are easily incorporated into clinical practice. However, providers should not overestimate the ability of these tools to rule out risks from long-term opioid therapy [9, 10]. This is particularly true when screening tools are applied in the intake process, but risk is not reassessed continually by active surveillance over ensuing weeks or months of use. It is also necessary, and in many states mandatory, for the provider to review the patient’s history in the state prescription drug monitoring database prior to prescribing opioids and other controlled substance medications.

Opioid therapy should also include patient education on the risks and benefits of opioid use; potential side effects; goals of treatment; behavioral expectations; safe storage and disposal of opioids; state driving law; and the clinic’s opioid prescription process [9, 10]. The use of a medication management agreement can be helpful in establishing and documenting informed consent, treatment goals, expected behaviors, and consequences should aberrant opioid-related behaviors occur. There are challenges with the use of medication agreements in palliative care and cancer populations, and historically these agreements have only been implemented with those patients considered to be at higher risk. However, many insurers now require evidence of a medication management agreement in their coverage determination process for opioids. As the regulatory climate in the United States evolves, there is a march toward wider and compulsory use of these agreements—prescribers should understand the current standards required by their institutions, societies, and state medical boards.

Comprehensive and ongoing opioid education and monitoring are appropriate for all patients, including those at low risk for misuse. Other components of the “universal precaution strategy” include identification of primary prescribing team/provider and pharmacy; regular review of prescription monitoring program; and optimization of non-pharmacological, non-opioid, adjuvant, and/or interventional therapies for the potential opioid-sparing effect. At each visit, reassessment of opioid therapy should occur with documentation of efficacy, adverse effects, patient functionality, and any aberrant opioid-related behaviors. Documentation should also include rationale of whether to continue, modify, or discontinue opioid therapy.

Additional structure/interventions should be implemented for those patients at moderate to high risk. This includes patients with active substance-use disorder exhibiting aberrant drug-taking behavior; patients without substance-use disorder history but exhibiting aberrant behaviors; and lastly patients with a history of substance-use disorder in active recovery with no current aberrant drug behaviors. Providers must stop prescribing opioids when there is significant concern or high probability that diversion is occurring. However, for other aberrant opioid-related behaviors, providers can consider additional mitigation strategies , tailored to the individual patient, and titrated over time. These include: use of toxicology screens ; shortened prescribing intervals; smaller quantities; more frequent provider visits; pill counts; limited use of short-acting opioids; selection of opioid drug and route to optimize compliance (e.g., fentanyl patch or methadone); use of lockboxes and home opioid dispensing by a trusted individual; prescription of naloxone rescue kits; and consultation with social work, chaplaincy, homecare agencies, psychiatry, and/or an addiction specialist. The team must reevaluate the risks and benefits of continuing to prescribe opioids if aberrant drug-taking behavior persists. If the ability to safely manage opioids in the outpatient setting has been exceeded, despite risk mitigation strategies , opioid therapy may be discontinued. Alternatively, the team can consider options for inpatient or extended-care-facility placement (based on patient’s clinical status and prognosis) to optimize symptom management while ensuring safe opioid use.

Pain: Initial Opioid Prescribing

Treating pain in cancer often requires opioids early on for severe symptoms, but the progression initially follows the WHO pain ladder with acetaminophen or nonsteroidal anti-inflammatory medication for mild and intermittent symptoms. With appropriate monitoring, these strategies can be effective for months or more in slow-moving diseases, particularly for somatic bony pain. Visceral, neuropathic, or steadily escalating symptoms require opioids for control. In cancer patients, combination agents with opiate and nonsteroidal anti-inflammatory agents or acetaminophen are not used due to frequent contraindications for the non-opioid component and likelihood of escalation beyond the allowable ceiling of this component. The commonly available short-acting agents —oxycodone, morphine, and hydromorphone—are routinely used, starting with an every-3-h as-needed regimen. The three opioids are equally effective for somatic and visceral pain but with differing potencies; the equivalent starting doses of each agent for oral or enteral administration are oxycodone 5 mg, morphine 7.5 mg, and hydromorphone 2 mg (1.875 mg to convert exactly). Each reaches peak effect within 30–60 min, and the effective duration is 3–4 h. Selection of a particular agent depends on previous tolerance experience and compatibility with other medical issues, detailed in Table 13.1.

Table 13.1 Properties of common opioids
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Dose adjustment is determined by the degree and duration of pain relief from each dose. For example, 7.5 mg oral morphine may improve pain from 8/10 to 6/10, whereas 15 mg brings it from 8/10 to 4/10. It is helpful to establish a goal pain score with the patient; this gives a valuable opportunity to teach that eliminating pain is unlikely with opiates and that there is a balance between the burden of frequent dosing and side effects and the degree of relief achieved. Dose frequency is assessed by how long episodes of pain last or how long the relief from medication lasts. When patients take more of their as-needed doses (up to eight times per day for an every-3-h as-needed prescription) it indicates frequent or nearly constant pain. Five or more as-needed opioid doses per day signal the need to consider long-acting opioids.

Pain: Long Acting Opioids

With increased severity and duration of pain, patients are more comfortable with the addition of a long-acting agent for constant pain control and as-needed doses of short-acting opioids for incident or fluctuating pain. The commonly available long-acting agents are oral extended-release morphine (MS-Contin) and oxycodone (OxyContin) in 2- or 3-times-daily dosing, or the topical fentanyl patch that provides 48–72 h of coverage. Long-acting agents should provide 70% of total daily opioid intake, with the balance provided by short-acting agents on an as-needed basis. The short-acting or breakthrough dose should be 10–15% of the total daily opioid dose, administered every 3–4 h as needed. See Example 13.1 below.

Example 13.1

Opioid Escalation

Outpatient taking morphine 15–30 mg every 3 h as needed for pain with a total of 11 daily tablets of 15 mg each.

Daily PO morphine = 11 × 15 mg = 165 mg morphine daily.

Long-acting morphine —The nearest available pill size gives an extended-release morphine dose of 60 mg two times daily for 120 mg daily total. This is close to the target of 70% of the daily total provided in extended-release form.

Short-acting morphine —Breakthrough dosing is 10–15% of 165 mg daily total, or 15 mg every 3 h as needed using the nearest available pill size of 15 mg.

Note that the usual 50–75% safety factor reduction is NOT required because there is no conversion between opioids. Although the 120 mg of long-acting morphine is less than the current 165 mg taken in the 11 short-acting doses initially, the patient has access to eight as-needed doses of 15 mg over the course of the day, giving a final dose range of 120 mg (no as-needed doses) to 240 mg (eight as-needed doses). At the follow-up encounter after this change, review of the pattern and number of short-acting doses should guide further adjustment of both agents.

Pain: Conversion Between Opioids

On admission and discharge of hospitalized patients, providers often have to convert between IV and oral routes and among different opiate agents. For example, a patient admitted with sudden onset of severe pain and vomiting from progressive cholangiocarcinoma with biliary obstruction may require intravenous opioid for initial relief, followed by introduction of a long-acting oral agent once oral intake is reestablished, and then transition from an IV to oral short-acting as-needed agent before discharge. Conversion of opiate doses is accomplished by creating a proportion between equianalgesic amounts of the different opioids and using this to convert to the equivalent dose of the new drug; see Example 13.2 below. A 25–33% safety factor reduction in the destination dose of the new opioid is recommended to allow for patient variation in absorption, drug sensitivity, metabolism, and secretion (Table 13.2).

Table 13.2 Equianalgesic doses of common opioids
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Example 13.2

Equianalgesic Conversion

Opioid Conversion Calculation:

Old opioid equivalent dose from table 13.2 = Old opioid dose/24 h X = new opioid dose/24 h

New opioid equivalent dose from table 13.2 X

Opioid conversion—Hospitalized patient receiving 3 mg IV hydromorphone every 6 h and 20 mg of oral oxycodone three times daily with good pain control. Convert this to a long- and short-acting morphine regimen for discharge.

Daily IV hydromorphone = 4 doses/day × 3 mg/dose = 12 mg IV hydromorphone daily.

Daily PO oxycodone = 3 doses/day × 20 mg/dose = 60 mg PO oxycodone daily.

Convert to daily PO morphine doses.

Hydromorphone Conversion Calculation:

30 mg Oral morphine = X X = 240 mg daily morphine from hydromorphone

1.5 mg IV hydromorphone 12 mg/day

Oxycodone Conversion Calculation:

30 mg Oral morphine = X X = 90 mg daily morphine from oxycodone

20 mg Oral oxycodone 60 mg/day

Total equivalent daily PO Morphine Dose = 240 mg + 90 mg = 330 mg per day

Apply safety factor reduction − 75% of 330 mg = 248 mg daily PO morphine.

In practice, it is best to use 75% as the upper limit of the safety conversion factor, with lower doses selected mainly to accommodate available pill sizes as long as the safety factor is between 67 and 75%. For this example, we will round to 240 mg for simplicity.

Extended-release morphine—For the long-acting component we aim for 70% of the daily total 240 mg range giving a target of 168 mg and calculate using the nearest pill size yielding 60 mg three times daily or 180 mg daily total. (The slight extra dosing to accommodate the pill size remains well below the 240 mg total goal).

Breakthrough dose = 10–15% of the 240 mg daily total dose range = 30 mg PO every 3 h as needed with the available 30 mg pill size.

Pain: Opioid Toxicity

The common adverse effects of opiates are nausea, somnolence, delirium, rash, itching, constipation, and ataxia. Except for constipation, these are all usually more pronounced during the first 3 days and the patient can be advised to try to endure until the symptoms fade or disappear. In some patients, however, the side effect will continue past the first several days or be severe enough that the patient will require a change in agent or occasionally an additional drug to control the side effect. The differences between the drugs in metabolism and clearance usually allow patients to tolerate an alternative to the initial agent.

Constipation occurs with all opiate drugs and requires regular use of osmotic and stimulant laxatives; a bowel regimen should be started on a standing basis with all new opioid prescriptions [11]. Polyethylene glycol is a very effective single-daily-dose treatment, and senna and lactulose may be necessary additions for more difficult cases. Soluble fiber, especially prune juice, is more helpful for opioid constipation than non-soluble fiber (psyllium) which when combined with opiates can lead to very dense stool that is difficult to pass. New agents are available for opioid-induced constipation that target the specific mesenteric plexus effects of opioids; these include methylnaltrexone and lubiprostone and can be helpful in severe cases. Recent meta-analysis suggests that docusate (Colace) is no more effective than placebo for constipation [12].

The principal danger with exposure to opioids, particularly new prescriptions or dose increases, is drug-mediated suppression of the respiratory drive. Opioids inhibit the respiratory stimulant effects of both hypercarbia and hypoxia, allowing the patient to tolerate these non-physiologic conditions. Opioid-naive patients and those with additional contributors to somnolence—metabolic derangement, neurologic injury, or medications such as benzodiazepines or alcohol—are most at risk. It is important for physicians to monitor the level of consciousness, respiratory rate, and oxygenation in the patient with acute pain treated with new or escalating doses of opiates. The highest risk of respiratory suppression occurs with intravenous opiates when doses are “stacked” at frequency intervals less than the drug’s time to peak effect. Capnography is a more sensitive and earlier warning for respiratory depression and is beginning to be used in monitoring of high-risk opiate situations in hospitals.

At very high doses of opiates, neuro-excitatory side effects of myoclonus and hyperesthesia emerge due to increasing activation of lower affinity opiate receptors. These unusual symptoms are intolerable and require reduction in total opioid dosing or rotation to a different opioid, often methadone, or both. Palliative care or anesthesia-pain consultation is helpful in these cases.

Pain: Buprenorphine and Methadone

Two special opioids are important for their utility in chronic pain management, neuropathic pain , and opioid abstinence settings. Methadone is unique due to its long half-life, availability in liquid form, and additional antagonist action at the NMDA receptor; this last quality provides additional benefit in cases of neuropathic pain or in cases of hyperesthesia caused by other opioids at extreme doses. The liquid form is useful for patients with a feeding tube who need a long-acting opioid. Two unique risks with methadone are due to the long and variable half-life of up to 60 h causing delayed emergence of somnolence and respiratory depression, and potentially significant prolongation of QT interval requiring EKG monitoring and awareness of other medications that will compound this effect. Methadone used for pain management is usually dosed in two- or three-times-daily regimens and can be prescribed by all licensed physicians with a notation of “for chronic pain” or “for cancer-related pain” noted on the prescription. Consultation or review with a pain or palliative care specialist is recommended given the unique challenges in methadone use.

Patients on once-daily methadone maintenance for opioid dependence at an addiction treatment center can be given additional short-acting opioids for acute pain while continuing their methadone maintenance dose. Treatment centers will usually allow this with advanced notice from the prescriber. To avoid overdose, it is critically important to confirm the current dose and last administration of methadone with their maintenance program before continuing it in the inpatient setting.

Buprenorphine (suboxone) has both opioid agonist and antagonist properties, and it is increasingly used to treat opioid dependence. Buprenorphine reduces opioid craving and offers mild analgesic effects by its agonist effects while blocking further euphoric (and analgesic effects) of additional opioids, either illicit or prescribed. Buprenorphine is prescribed as a three-times-daily tablet or sublingual film and a newly released depot IM injection. The patient on maximal dose buprenorphine for abstinence treatment with increasing cancer pain must be switched to a traditional opioid for pain relief; assistance of a pain, addiction, or anesthesia-pain provider is usually necessary.

Pain: Adjuvant Pain Medications

Additional medications and modalities are useful treatments that can lessen the overall opioid dose or add additional potency for neuropathic symptoms. Acetaminophen , NSAIDS , and corticosteroids can be extremely effective in the short term for inflammatory and bone pain if the agents are compatible with the patient’s illness and other medications. Several anti-epileptic and antidepressant agents are effective alone or in combination for neuropathic pain. These symptoms are common with taxane- or platinum-based chemotherapy and respond well to agents such as gabapentin, pregabalin, amitriptyline, venlafaxine, or duloxetine. Bisphosphonates can help with pain and prevention of pathologic vertebral compression fractures from lytic bone lesions.

Pain: Procedural Pain Interventions

Anesthesia-pain specialists can perform regional nerve blocks for cancer pain by infiltrating around a nerve or nerve root with local anesthetic (marcaine), steroid, and sometimes a nerve ablative agent such as ethanol or phenol. The ablative agent can extend the effect of the block for up to 3 months although the average duration of relief is 1 month. Common nerve blocks are at the celiac or hypogastric plexus for abdominal and pelvic pain, intercostal and paravertebral blocks for chest wall and abdominal wall pain, and trigeminal block for facial nerve symptoms. Pain blocks are relatively easy to perform under ultrasound or fluoroscopic guidance, they have few to no side effects, and they can offer significant and prolonged relief and allow decrease in opioid dosing.

Nausea

Nausea is a very common symptom in most serious illnesses with several independent mechanisms and associated targets for treatment. Nausea is a disabling and discouraging symptom common in cancer patients that causes significant suffering from discomfort, inability to eat, weight loss, inactivity, isolation, and depressive symptoms. It is caused by several independent mechanisms and in cancer is associated with CNS disease, humoral agents released by tumor, infiltration or obstruction of GI organs, and common chemotherapeutic agents.

Nausea Mechanism

There are four routes of nervous system input that stimulate nausea, all leading to the medullary vomiting center with afferent output to the stomach and diaphragm via the vagus nerve. The fourth ventricle’s area postrema is termed the chemoreceptor trigger zone (CTZ)—many exogenous (and some endogenous) substances are antagonists here leading to nausea. This brain region is also sensitive to compression from obstruction, edema, or tumor and mediates the nausea caused by increased intracranial pressure. Vagus afferent signals originate from mechano- and chemoreceptors in the liver, stomach, peritoneum, and intestinal walls. Triggers include many cancer-related processes including vascular edema, excessive osmotic load, physical distension, compression from tumor or ascites, and specific toxins. Visual and motion-related nausea is transmitted from disordered vestibular and ophthalmic input or caused by impaired processing of these signals, and higher cortical stimuli trigger nausea from heightened anxiety states.

Nausea Treatment

Strategies for nausea and vomiting treatment should be tailored to the operative mechanism (often more than one), shown in Table 13.3. Several agents may be necessary to control severe symptoms. Gastric and small-bowel decompression and drainage may be required for persistent vomiting from obstruction, related to gastric outlet or small-bowel obstruction common in gynecologic and gastrointestinal cancers. Maximal medical treatment with steroids and antisecretory agents can sometime allow removal of a nasogastric tube, but often a more permanent percutaneous drainage or surgical entero-enteral bypass is required to control vomiting.

Table 13.3 Nausea mechanisms and medication strategies
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Dyspnea

Dyspnea is the distressing sensation of tightness in the chest, air hunger, and suffocation with attendant extreme anxiety and fear of dying. Cancer leads to dyspnea through cardiac, pulmonary, neurologic, and metabolic derangements and is a common symptom in late-stage disease accompanying pain, anemia, and cachexia. Recognizing the pathophysiology of dyspnea is the essential first step to guide treatment [13], and most of the physiologic causes can be improved with medications and procedures (listed in Table 13.4) resulting in reduced dyspnea. Careful medical evaluation is essential to allow these effective treatments.

Table 13.4 Common dyspnea mechanisms and associated disease processes
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Oxygen is an immediately available tool for relief of dyspnea related to hypoxia, and it can be administered continuously in home settings; it is not helpful when oxygenation is normal beyond the mild sensation of positive airway pressure it provides. More helpful for normal oxygenation is a fan directed at the face to reduce dyspnea; this strategy is helpful at any level of oxygenation. Opioids reduce dyspnea by dampening the brain’s sensitivity to mechanoreceptors in the lungs and chest, and chemoreceptors in the carotid bodies and brain, allowing the brain’s respiratory center to tolerate both hypoxia and hypercarbia without increasing respiratory drive. Opiates also relax pulmonary vasculature, further reducing mechanoreceptor stimulation and increasing pulmonary perfusion. These multiple effects of opioids are essential in allowing the patient to tolerate acute and chronic respiratory insufficiency with comfort. Coupled with oxygen, patient’s exertional capacity can often be increased enough to make a meaningful difference in their activity level. A low dose of opioid—morphine 0.5 mg IV, or 5 mg of oral morphine elixir every 3 h as needed—may be all that is required to improve dyspnea.

It is essential to prepare patients and families for the consequences of increasing use of opioids to tolerate dyspnea in patients with marginal respiratory function; decreasing respiration and ventilation will lead to respiratory failure, intubation, or death. Appropriate advanced directives should be in place. Benzodiazepines are a useful adjunct to reduce the extreme anxiety caused by dyspnea; these agents will compound sedation and slowed respiratory drive.

Anorexia

Anorexia , a diminished appetite and aversion to food, is frequently attributed to nausea alone; however, once nausea is controlled, anorexia may remain and require additional interventions aimed at counteracting the effects of tumor cytokines, altered GI functioning, and cancer-therapy drugs and radiation. Anti-anorectic agents cannot reverse the dramatic catabolism and profound aversion to food in aggressive malignancies like pancreatic cancer. Expectations for “reversal” of weight loss or “return” of appetite should be discussed to set realistic expectations; appetite and dysgeusia can be improved to a much greater extent than weight loss. Corticosteroids offer an immediate but time-limited boost in appetite and ability to tolerate food, but difficult side effects occur both acutely and with longer use. More sustainable long-term agents include megestrol acetate which works by altering metabolic balance and increased fat production, and dronabinol and mirtazapine which work by improving the sensations of taste, smell, and interest in food. All three can lead to weight gain, but with some risks and side effects; megestrol carries an increased risk of deep vein thrombosis and may be incompatible with other hormonal therapies. Dronabinol causes dysphoria and drowsiness, while mirtazapine can cause confusion and somnolence in the elderly. Anxiety and depression can independently cause both nausea and anorexia; these symptoms can improve with targeted psychiatric agents.

Fatigue

Reduced endurance for physical activity and cognitive functions of memory, problem solving, concentration, and mood stability are features of cancer-related fatigue . This is a ubiquitous symptom in advanced disease causing isolation, loss of autonomy, and depression when patients become unable to complete their activities of daily living, homebound, or even bedbound. Multiple pathways including cachexia, reduced fluid intake, fatigue, nausea, depression, insomnia, overall tumor burden, and many others leave patients without enough energy to maintain their age-appropriate activity. Effective interventions target the underlying pathophysiology—nutrition, chemotherapy, and normalizing impaired organ functioning—and are the only measures that can bring long-term relief for profound fatigue [14]. Evidence for fatigue symptom relief in cancer supports gentle regular exercise which results in improved perfusion, increased appetite, and endorphin production; promotes a sense of “well-being”; and lessens the sense of “inertia” that ill patients commonly have. Psychostimulants have not shown efficacy in fatigue although they are specifically helpful for opiated-related somnolence and poor concentration.

Ambulatory Palliative Care

Ambulatory palliative care is a thriving new frontier in palliative medicine that has tremendous promise in improving quality of life for our patients as well as increasing goal concordance, reducing unnecessary and ineffective care, and possibly extending survival. As compared to the long-established inpatient hospital palliative service, ambulatory palliative practice presents the opportunity to develop long-term relationships with patients and to support their coping with illness through all phases [15]. In this setting, there are long periods of stability between episodes of acute illness, and the focus of the visits turns to healthy coping and living well with illness. Particularly in cancer, where patients have frequent visits to their cancer center and access to palliative care providers, ambulatory palliative care is an ideal opportunity to address difficult issues of coping with illness, understanding prognosis, planning for the future, and managing complex symptoms. In the following sections, we present the work of ambulatory palliative care with a focus on cancer patients; first we describe recent work defining the interventions and effects of palliative practice, followed by essential provider skills and knowledge related to communication, coping, and understanding.

A landmark paper by Temel et al., 2010 [16], demonstrated that patients with lung cancer referred early to a palliative care provider, and having an average of 4-monthly palliative care visits before death, showed the anticipated improvements in quality of life and depression scores over the course of their care. A surprise was a statistically significant accompanying survival advantage over patients treated with “usual care,” 11.6 months instead of 8.9 months. “Early” in this study meant the point of diagnosis of metastatic non-small cell lung cancer, already an advanced state of disease with a prognosis of less than 1 year. Despite its limitations—single institution, single diagnosis, 151 total patients—the randomized controlled methodology and dramatic results galvanized an effort in palliative care and oncology to explore a somewhat automatic or “triggered” referral process to palliative care for ongoing visits focused on symptom management and improved understanding and coping with illness. The true innovation here is the change from the usual symptom-based referral to a disease stage- or prognosis-based reason for referral. Patients, families, medical societies, advocacy groups, and society at large have taken notice of these results, and the field has focused on creating and studying systems for earlier palliative care interventions, and on delineating the effective processes and methods of ambulatory palliative care practice.

At least nine subsequent studies published between 2012 and 2016 generally confirm the hypothesis that early, intentional, and focused palliative care intervention for patients with cancer results in improved quality of life [17]. The American Society of Clinical Oncology has reviewed these works for evidence of benefit, primarily in improved quality of life and psychological distress scores, and describes the conclusions as evidence based, of moderate quality, and strong in strength [17]. Known limitations are the high prevalence of advanced cancers and solid tumors over hematological malignancies in study populations, the need to define the appropriate starting point or “trigger” to invite palliative care, and the wide variety of interventions studied without information on which specific palliative actions are beneficial. Conclusions from the review have led to the society’s position that “Inpatients and outpatients with advanced cancer should receive dedicated palliative care services, early in the disease course, concurrent with active treatment. Referral of patients to interdisciplinary palliative care teams is optimal, and services may complement existing programs. Providers may refer family and friend caregivers of patients with early or advanced cancer to palliative care services.”

Two studies included above deserve special mention for the unique interventions applied. Bakitas [18] studied an implementation of the ENABLE intervention [19], an advanced-practice nurse-led project based on the chronic care model used in case management ; this entailed an educational approach to encourage patient activation, self-management, and empowerment. Program nurses led four initial in-person group sessions for patients followed by available telephone support, an education manual, and monthly phone “check-ins.” Overall distress was measured during phone contact using the National Comprehensive Cancer Network’s “Distress Thermometer” tool [20] and patients were guided by the nurse practitioner in a problem-solving approach using an assigned module from their education manual [21]. Zimmerman [22] created a seamless program of palliative care support for cancer patients using defined assessment tools , regular phone follow-up, and a uniform multidisciplinary approach delivered by inpatient, outpatient, and home care teams that addressed physical, psychosocial, social, and spiritual needs. The finely integrated care in this Canadian study demonstrates an aspirational goal possible in a large single-payer program with a common medical record.

There are more than 20 studies in the surgical literature since 1998 reporting interventions aimed at improving various combinations of symptom management, end-of-life communication, and patient decision-making; results are quite heterogeneous regarding selection of surgical disease, palliative interventions applied, and methodologic quality . The approaches used were unique to surgical settings—one-third involved interventions applied to patients and families in the intensive care unit, and the remaining majority applied to interventions applied before and immediately after a surgical procedure. A systemic review describes this current evidence for effectiveness as “sparse” and calls for increased rigor and standardization in the study of palliative care in surgery [23]. The applicability of the longer term medical studies cited earlier is not difficult to accept for surgical patients, particularly in cancer where the disease span is much longer than a single hospitalization or procedure, and care is shared by surgeons, radiation oncologists, medical oncologists, and palliative care providers.

The impressive quality of life gains in the cited studies raise the question of which palliative care practices generate these results. The answer is not known precisely, but many common elements are illustrated in a follow-up analysis [24] of the content of palliative care visits in the 2010 lung cancer study. Records from the visits reveal a defined series of tasks and a usual progression that coincides with disease advancement . There is significant overlap in some of these tasks between the palliative and the medical oncology provider visits; others were “owned” primarily by one or the other. Initial visits began with relationship and rapport building between provider, patient, and family, and then a discussion of the illness, eliciting the patient’s preferences for receiving information, a review of current prognostic awareness, and information sharing about the effects of cancer treatment. All visits included assessment and management of symptoms and current coping issues; illness status was reviewed each time, and outreach and engagement of family members were promoted. Final visits focused on decision-making about available cancer treatments and planning for end-of-life caregiving and logistics . The exact trajectory of symptoms, coping, and awareness over time through the progression of illness is unique to the individual but there themes are common enough for the provider to anticipate and prepare the patient for coming challenges and “shepherd” him or her through when they arrive.

As we highlighted in the symptom management section, the importance of addressing symptoms (seen above as a component of all visits) cannot be underestimated. Patients’ cognition is distracted and diminished by active symptoms, and their thoughts are gloomy and frightening. It is essential to improve symptoms through expert attention and intervention to allow the relationship and communication to develop with the palliative provider and grow to include prognostic understanding and coping (Table 13.5).

Table 13.5 Conversation supporting adaptive coping [15]
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When symptoms are controlled, attention turns to promoting the patient’s adaptive coping with illness. Conversation at each visit follows three themes as outlined below [15]. This work is part of a larger effort from CAPC [1], the Center to Advance Palliative Care, which includes white papers, courses, and materials to promote the practice of ambulatory palliative care.

Adaptive (or constructive) coping is a term from psychology meaning the conscious process of solving personal and interpersonal problems to reduce psychological stress [25]. Translating to palliative care, adaptive coping is a collection of strategies and skills to cope with the stress of illness. The palliative provider can develop these important traits by discussing specific strategies and counseling the patient on how and when to use them to overcome stress and psychological suffering. Identifying and supporting coping strategies such as distraction, optimism, meditation, and intellectualization, among others, provide the patient with tools that allow them to tolerate unpleasant affect, discouraging thoughts, unwelcome news, and uncertainty about the future [15]. The “difficult conversation” becomes a process over time with much less of the urgency and ultimatums of inpatient crises; the ambulatory relationship provides the opportunity for evolving coping skills in a measured and comfortable way.

Palliative care providers consider prognostic awareness to be a unique and profound understanding of the intersection of disease and the future [26]; such awareness for patients requires cultivation over time with repeated adjustments and reinforcement. In this technique, prognosis is broken into manageable pieces that allow for slow assimilation despite the normal swings and variability in the patient and family’s optimism and strength. The abstract and unreal vagary of what is ahead can yield to a much clearer and confident approach when the patient can safely explore the meanings and uncertainties of their future in limited episodes of intense communication, separated by time at home to reflect and filter in solitude and with their loved ones. The work of cultivating prognostic awareness is described in a stepwise process that is accessible to palliative providers, generalists, and specialists in any field (Table 13.6).

Table 13.6 Cultivating prognostic awareness [26]
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As you can see, this approach is a dissection of components of prognosis and a careful assessment of when to deliver difficult news—particularly the challenging step that physicians sometime face, when the patient is going to be surprised and shocked by prognostic information or when he or she must assimilate it quickly for clinical decision-making; this situation is summarized as “naming the dilemma” [26]. The palliative care provider fosters trust and develops the awareness and implications of prognosis for the patient and family—this is not in conflict with the oncologist or other disease specialists, but a specific use of prognosis to craft the “what does this mean for me” understanding that is so important to patient agency and quality of life. A specific technique in bridging this divide is to provide a “dual framework” where a patient can talk about living well AND tolerate the possibility of dying [27]. Appealing to metacognition, the patient can “talk about talking about it” and learn safe ways to contain fear and speculation about worsening disease and death while living well and feeling optimistic.

A growing challenge in presenting cancer prognosis is the impact of immune and genetically targeted therapies such as pembrolizumab (Keytruda) in melanoma and lung cancer and trastuzumab (Herceptin) in breast cancer [28]. Subsets of patients with cancers showing specific genetic features may be eligible for FDA-approved or clinical trial therapies that have the potential to extend prognosis. A minority of these patients will have astounding results: near or complete eradication of disease without serious toxicity, or an extended period of reduced symptoms and disease regression. There are difficult dilemmas faced in these situations regarding repeat tissue sampling, eligibility and payment for therapy, severe complications, and therapy failure, and much is unknown about the duration of disease control, susceptibility to adverse effects, and major long-term adverse effects. Patients, palliative care providers, and oncologists are appropriately hopeful for meaningful response to treatment in late-stage disease; for palliative care providers, a new degree of prognostic uncertainty is introduced which can complicate and delay prognostic awareness and planning for the future.

Prognostic misunderstanding is a common problem that many providers and patients face. Studies show that both groups overestimate prognosis and survival, with patients often not hearing that their disease is incurable even when this is stated directly at earlier visits. There is science to unpacking these situations [29]: a lengthy differential diagnosis for the cause of misunderstanding, and a pendulum-like variation in the patient’s perspective ranging from frankly unrealistic to morbidly dire. Solutions include effective communication between providers to reduce ambiguity or conflict in the delivered messages and a consistent coordinated approach to reinforce appropriate understanding through different emotional states, care settings, symptom burdens, and new developments. The collaboration achieved and the visible positive effects on the patient and family’s distress are remarkably effective and represent gratifying moments in the care of cancer patients.

Palliative care adds a partner or even a team for the medical oncologist or surgeon to provide several styles of approach to promote patient and family engagement with prognosis; there are differing and complementary answers for questions of “how long will I survive,” “what will my death look like,” “what will cause me distress and discomfort at the end,” and “how will I cope with everything that is going to happen.” By providing a guide, confidence, and essential language and structure, the palliative care provider and ambulatory visit sequence allow for a comprehensive, nuanced, and evolving adaptation to these difficult essential questions.

Communication

Expert communication between patients is a necessary requirement for developing the adaptive coping that leads to enhanced satisfaction and disease outcomes. Such communication is often stressful for everybody, patient, family, and provider, and there is a risk of delay or avoidance altogether due to this difficulty and providers’ lack of knowledge and experience. Specific skills are available to allow effective communication, and they can be learned through study, reflection, and practice; three essential techniques are presented here.

Ask-Tell-Ask

The Ask-Tell-Ask sequence [30] is helpful to present new information by building on what the patient already knows about their illness. Ask-Tell-Ask allows the provider to remain aware of the patient’s current and evolving understanding, and it guides where to go next in the conversation and when the patient is reaching their fill. Ask-Tell-Ask can be applied to the large topic of prognosis and survival or to a focused event such as the interpretation of a scan. Examples of the Ask-Tell-Ask sequence are illustrated below (Example 13.3).

Example 13.3

Ask-Tell-Ask

  • Ask—“What have you heard most recently about what is going on with your illness?”

  • Tell—“Results from the current scan show your cancer has progressed despite treatment.”

  • Ask—“What is going through your mind right now?”

Expanding the Conversation

Like the second step in the Ask-Tell-Ask sequence, it is necessary to listen to the patient for clues about what is the best next step for conversation. Providers often cannot gauge what is most important to him or her at that moment; it is easy to be swayed by what we as the provider or other contributors think is the primary immediate issue. Short open-ended questions allow the patient to control the direction of the conversation, and they reveal the patient’s present state of thinking. Allowing silence after the question, without interruption or clarification by the provider, is very helpful to give patients a feeling of comfort and control. The response following silence often is very rich with meaning and emotion. Common examples are the following:

“How do you feel about what we have discussed today?”

“What are your thoughts about getting through the next few months?”

“How are you coping with your cancer these days?”

Surgical Communication Checklist

An emerging template or “checklist” approach to patient-provider communication involves the Serious Illness Care Project [31], and its recent application to emergency surgical conditions [32]. This technique is tailored to the needs of the surgeon when a critical decision must be made with patient and family under time pressure with significant ramifications for ultimate quality of life and goal-concordant care. The checklist approach provides uniformity and completeness in critical communication and improves the overall quality of information sharing and decision-making (Table 13.7). The authors eloquently reduce the aims and approach to communication and then go on to provide a stepwise progression of the conversation and sample language. Educational offerings and materials specifically for surgeon communication using this paradigm are under development by this research group.

Table 13.7 Goals of a structured surgical communication framework [32]
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Responding to Emotion

Strong emotions are natural and should be expected when discussing difficult topics like prognosis or planning for a future with progressing illness. For the provider, strong emotion is challenging and anxiety provoking, but can become easier and more effective with techniques to help the patient feel understood and to allow them to progress the conversation onwards. Illustrated in Table 13.8 is the NURSE model [33], describing a stepwise progression of response to emotion. These can be used in sequence or, for the more experienced provider, individually to provide options for demonstrating empathy and advancing the conversation.

Table 13.8 NURSE model of responding to emotion [33]
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Goals-of-Care Discussion

A goals-of-care discussion is a specific kind of provider-patient conversation that serves several critical functions: clarifying the patient’s goals and wishes for the future, demonstrating provider understanding and alignment with the patient’s values, and preparing for goal-concordant caregiving. The goals-of-care approach can apply to all important care decisions, and it is not limited to provider-patient-family conflicts or specific resuscitation or POLST issues (physician order for life-sustaining treatment). The goals-of-care style fits every important decision, and it is very important early in the disease course to elicit and define values and demonstrate respect, interest, and alignment. In the ideal situation, discussion takes place between the patient and their trusted long-term provider; themes and choices are captured in the common medical record for others to follow and expand in subsequent hospital or specialist encounters. Organizing these discussions is facilitated by a “talking map” or mental model to increase the consistency and timeliness of the conversation. The REMAP model [33] is illustrated here in Table 13.9.

Table 13.9 REMAP model for goals-of-care discussion [33]
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Best Case–Worst Case Scenario in Surgical Communication

A very useful technique in surgical decision-making with high-risk procedures is the best case–worst case formulation [34], a technique that helps the surgeon, patient, and family go beyond the often-scant numerical data and tie the operative risks to the patient’s overall condition and future goals. The surgeon presents surgery and no surgery as two available strategies instead of surgery as the “dominant plan with a secondary alternative” of avoiding surgery. He or she then describes the best and worst outcome of each strategy. The surgeon can provide rich detail of the alternatives from personal experience and use clinical judgment regarding the patient’s condition and available data to estimate what is most likely to occur with each strategy (Example 13.4).

Example 13.4

Best Case–Worst Case in Surgery

A 49-year-old woman has been treated for cervical cancer with chemotherapy and radiation brachytherapy. She has no detectable active disease, but her treatment has resulted in cachexia; incontinence; fistulas between bladder, vagina, and rectum; and chronic infection requiring IV antibiotics and tube drainage. She is unable to leave the hospital because of the complex infection care and total parenteral nutrition. At the patient’s and family’s request, the surgical oncologist describes a pelvic exenteration as a risky but potentially curative procedure. Best case–worst case presentation of this option might be as follows:

Surgery—Best Case: With surgery, your infections would resolve and you can leave the hospital for a rehabilitation center in 1 week, and then return home 2 weeks later without TPN. After 2 months of physical therapy and nutrition, you could eat normally and maintain your weight, and you will be able to drive, walk limited distances at a slowed pace, and tolerate sedentary work on a part-time basis. You would have to manage a urostomy and colostomy indefinitely. You may be able to have further surgery to allow sexual intercourse although it will probably always entail some discomfort.

Surgery—Likely Outcome: You will have a rocky 2 weeks after the surgery with increased pain and further drainage procedures required. Ultimately, you can move to a rehabilitation center, but wound care, poor nutrition, and recurrent infections will result in a life lived at rehab with monthly hospitalizations. There will be ongoing pain and very limited mobility and endurance with most of your time spent in bed. Ultimately, an infection will become so severe that we will not be able to control it, and you may die (comfortably) at the rehab or in the hospital within the next 1–2 years.

Surgery—Worst Case: The surgery will be initially successful, but will then fail resulting in continued fistulas, infections, incontinence, ongoing dependence on TPN, and more severe pain and increased somnolence from opiates. Similar to your current situation, you will not be able to survive outside of the hospital and you will ultimately die from overwhelming infection in the next few months.

No Surgery—Best Case: We will simplify your infectious drainage and antibiotic regimen to allow your return home with hospice care, initially including continued total parenteral nutrition. You will be comfortable and able to ambulate short distances inside initially. Over the next 3 weeks you will become progressively weaker and bed bound, and develop worsening infection. We will stop TPN and increase pain medication, leading to a more rapid decline with increasing drowsiness and coma and death at home 4 to 6 weeks from now. You will have continuous incontinence of urine and stool that can be managed effectively with frequent scheduled changes of diapers and bedding.

No Surgery—Likely Outcome: We will stabilize your symptoms for discharge to rehab or home, but your requirements for pain medication and worsening nutrition and hydration status will result in progressing drowsiness, confusion, and unresponsiveness. You will likely die comfortably at rehab or home in the next 10 days.

No Surgery—Worst Case: You will continue your current care in the hospital with antibiotics, tube drainage, incontinence, and TPN. Ultimately, an overwhelming infection will result in organ failure and death, likely sometime in the next few months.

This is a heartbreaking case with little chance for a durable and functional recovery, and the presentation here is artificially abbreviated and limited to text. However, the approach presenting the limits of what is possible gives patients and families the ability to contextualize the range of outcomes instead of facing a stark and polarized surgery vs. no surgery fork. This is not a brief conversation, and likely not a single conversation either. The surgeon is unlikely to be able to supervise and orchestrate the care that each outcome requires, but medical oncology, palliative care, and hospice providers will provide much of the downstream attention. This conversation and decision-making process goes well beyond traditional procedural consent and places the surgeon in a central role in negotiating the goal-concordant care that every patient desires.

The communication techniques presented here allow the provider to develop their skills through experimentation with new language and structure for conversations. More formal training through live coursework is readily available and a very enjoyable experiential learning activity in contrast to our usual didactic learning practices. The importance of refining our communication about prognosis, coping with illness, and end of life cannot be overestimated. With practice and new techniques, all providers can significantly improve both their patient’s experience of care and their quality of life through illness. We encourage readers to explore the reference material and develop their skills.

Summary

This chapter has been a tour of the role and methods of ambulatory palliative care. Through effective symptom management, high-quality communication, and cultivation of prognostic awareness and adaptive coping, palliative care offers hope that the experience of illness can be comfortable, peaceful, and meaningful in physical, spiritual, and emotional realms. Although secondary, the significant societal benefits of reduced intensity of medical intervention at the end of life are increasingly important in the efficiency of our healthcare system. Improving this process is the aim of palliative care, particularly the primary palliative work done by surgeons and providers in all capacities. The opportunity for spiritual and emotional growth during illness and at the end of life is possible with attentive, effective, and available palliative care. This essential role of the healer, as provider of comfort and trusted advisor, is a profoundly important and deeply satisfying bulwark of medical practice.