The basic principles of the diagnosis and management of pain syndromes are similar across all clinical settings. Details of the application of these principles, however, can vary significantly depending on the clinical context. One context that is especially important is the care of patients with incurable, progressive, and ultimately fatal illnesses who are in or approaching the terminal phase. This is sometimes referred to in the context of “palliative care,” and this term, although not fully satisfactory,¹ is used throughout most of the discussions in this chapter. The range of pain syndromes that arise in these situations includes most of the acute and chronic pain syndromes addressed in detail in other chapters in this text, and their management primarily involves the same diagnostic and therapeutic strategies and skills. Nonetheless, pain management in the palliative care setting often raises clinical and ethical issues that are at least somewhat different from those in other settings. This chapter focuses primarily on those differences.

The Task Force on Palliative Care of the Last Acts Campaign,² formulated by representatives of many leading U.S. professional organizations, states: “Palliative care refers to the comprehensive management of physical, social, spiritual, and existential needs of patients, particularly those with incurable, progressive illnesses. Palliative care affirms life and regards dying as a natural process that is a profoundly personal experience for the individual and family. The goal of palliative care is to achieve the best possible quality of life through relief of suffering, control of symptoms, and restoration of functional capacity while remaining sensitive to personal, cultural and religious values, beliefs, and practices.” The Task Force identified five “core precepts” of the evolving field of palliative care:

1. 
   

   Respecting patient goals, preferences, and choices: Identifies and honors the preferences of the patient and family through careful attention to their values, goals, and priorities, as well as their cultural and spiritual perspectives and assists patients in establishing goals of care by facilitating their understanding of their diagnosis and prognosis, clarifying priorities, promoting informed choices, and providing an opportunity for negotiating a care plan with providers

   
   
2. 
   

   Comprehensive caring: Places a high priority on physical comfort and functional capacity, including management of pain and other symptoms; diagnosis and treatment of psychological distress and assistance in remaining as independent as possible or desired; and provides physical, psychological, social and spiritual support to help the patient and family adapt to the anticipated decline associated with advanced, progressive, incurable disease

   
   
3. 
   

   Using the strengths of interdisciplinary resources: Requires an interdisciplinary approach drawing on the expertise of, among others, physicians, nurses, psychologists, pharmacists, pastoral caregivers, social workers, ancillary staff, volunteers, and family members to address the multidimensional aspects of care; incorporates the full array of interinstitutional and community resources (hospitals, home care, hospice, long-term care, adult day services); and promotes a seamless transition between institutions or settings and services

   
   
4. 
   

   Acknowledging and addressing caregiver concerns: Appreciates the substantial physical, emotional, and economic demands placed on families caring for someone at home as they attempt to fulfill caregiving responsibilities and meet their own personal needs; anticipates that some family caregivers may be at high risk for fatigue, physical illness, and emotional distress; and considers the special needs of these caregivers in planning and delivering services

   
   
5. 
   

   Building systems and mechanisms of support: Promotes equitable and timely access to the full array of interdisciplinary services necessary to meet the multidimensional needs of patients and caregivers

Palliative care complements other therapies that are available and appropriate to the identified goals of care early in the course of a chronic illness. The intensity and range of palliative interventions may increase as the illness progresses and the complexity of the care and needs of patients and their families increases. The priority of care frequently shifts during this time to focus on end-of-life decision making and care that support comfort and are consistent with the values and expressed desires of the patient. Palliative care guides patients and their families as they make the transition through the changing goals of care. It also helps patients who wish to address issues of life completion and life closure.

For many people who desire ongoing traditional curative care, hospice is not an attractive option. Patients who are averse to the word or concept of hospice or who have difficulty acknowledging that they are facing a terminal illness may benefit from and should be able to receive palliative services. To best prepare patients and families physically, emotionally, and spiritually and to ensure the highest quality of life, “palliative discussions” should begin earlier in the disease trajectory. Palliative care should be considered not as an “alternative” to other types of medical treatment but as an adjunct type of care to allow comprehensive, whole patient–directed, high-quality management. Palliative care services should be provided along the continuum of care from acute care to ambulatory care to long-term care and should include hospice care.³

Palliative care discussions should occur at the time of diagnosis of a chronic, progressive disease, providing the patient with full informed consent for all treatment options. If the disease progresses, the focus on curative treatments may decrease as an emphasis on palliative care and relief of suffering (physical, emotional, and spiritual) increases. The patient and family are informed partners in decision making from the beginning and have time to prepare for and respond to physical, psychosocial, and spiritual issues.³

The 2011 Public Opinion Research on Palliative Care was commissioned by the Center to Advance Palliative Care to explore the awareness and understanding of palliative care among key audiences. Their report found that consumers have concerns about the level of care patients with serious illness receive. The biggest concerns identified were:

1. 
   

   Doctors might not provide all of the treatment options available (58%).

   
   
2. 
   

   Doctors might not talk and share information with each other (55%).

   
   
3. 
   

   Doctors might not choose the best treatment option for a seriously ill patient’s medical condition (54%).

   
   
4. 
   

   Patients with serious illness and their families leave a doctor’s office or hospital feeling unsure about what they are supposed to do when they get home (51%).

   
   
5. 
   

   Patients with serious illness and their families do not have enough control over their treatment options (51%).

   
   
6. 
   

   Doctors do not spend enough time talking with and listening to patients and their families (50%).

More than 70% of consumers were not knowledgeable about palliative care.

Physicians tended to equate palliative care with “hospice” or “end-of-life” care and were resistant to believing otherwise. Although the physicians surveyed said that they have referred patients to palliative care services, they admitted they only did so when it was for end-of-life care.

The following revised definition of palliative care based on the qualitative research was found to have a positive effect when defining or describing palliative care for consumers:

Defining clear patient-centered goals of care is a prerequisite to developing optimal diagnostic and therapeutic strategies. In the medical ethics literature, four core values that physicians are obligated to consider are frequently identified: autonomy, beneficence, justice, and nonmaleficence. The physician’s professional integrity is an additional important value. Although cases in which these values are in conflict can pose exceedingly difficult ethical dilemmas, in most cases involving the clinical care of an individual patient, the central question that should be posed about any proposed intervention is: Do the expected benefits outweigh the expected burdens from the patient’s perspective?

If the answer is yes, the intervention should almost always be instituted unless an alternative is even more favorable. If the answer is no, the intervention should never be instituted, and if it is already in place, it should be withdrawn. This assessment applies equally to minor interventions such as phlebotomy or plain radiography and to much more complex interventions such as surgery or a course of radiation therapy.

The simplicity of this framework should not mask the frequent complexity of its application, which requires as full as possible an understanding of what the individual patient considers a “benefit” or a “burden,” as well as an assessment of the probability of those benefits and burdens for each intervention under consideration. In this process, there is a natural division of labor between the respective roles of the patient (or his or her surrogate) and the patient’s physician or other members of the clinical team, as illustrated in Figure 57-1. In developing plans of care, it is therefore vitally important for the clinician to engage the patient (or surrogate) in a careful consideration of the relative priority of a wide range of possible goals of care (Figs. 57-2 and 57-3).

One common error in planning care is that discussions of relative priority for various potentially competing goals of care are limited to comfort versus length of life. As described earlier, however, comfort is rarely the most important human life goal but rather the prerequisite to achieving other goals. Furthermore, recent evidence indicates that this presumed notion that the goals of comfort and length of life are mutually exclusive may be an inaccurate representation of this more complex issue. In fact, research has shown that in patients with metastatic non–small cell lung cancer, median survival times were longer in those receiving early palliative care interventions versus those who received standard care; importantly, patients who received early palliative care also reported significantly improved quality of life and mood.⁵ Table 57-1 lists some of the goals of care that are most commonly expressed by patients confronting an ultimately fatal illness.

It is also important to appreciate that the relative priority of various goals of care almost always varies over the course of an illness, either as the illness itself progresses or as the person changes during the process of living with the illness. The clinician therefore needs to review regularly with the patient not only how well various goals of care are being achieved but also whether the relative priority of various goals has changed (or whether entirely new goals have been identified).

A second common error in planning care is to confuse the articulation of goals of care with the determination of the most appropriate means of accomplishing those goals. This is a frequent shortcoming of both written and orally conveyed advance directives, which are often framed in terms of preferences for or against various clinical interventions (e.g., mechanical ventilation, cardiopulmonary resuscitation [CPR], or “feeding tubes”). Many patients who express with great confidence some variant of “I would never want to be kept alive by machines” will, on further discussion, quickly agree that “if a limited period of extremely intensive care in an intensive care unit might restore me to near-normal condition, I would want it.” For some patients who have previously adamantly expressed the view that they do not want any further “surgery,” the expected benefits of an anatomical pain intervention that includes a relatively minor surgical procedure may far outweigh any likely burdens.⁶

In the opposite direction, patients are frequently asked some variant of “if your heart stops, would you want to be resuscitated?” The common affirmative response leads to a “full code” status that clinical staff may believe is inappropriate. But the desire to be “resuscitated” is an expression of a goal, which may not at all reflect a well-informed judgment about whether the expected benefits of administering CPR are likely to outweigh the expected burdens. A discussion that is much more likely to yield a plan of care that optimally serves the patient’s most important goals might begin with a conversation about the patient’s attitude toward death (“At this point in your illness, is death the enemy?”), as well as what conditions of prolonged life are most hoped for or feared. From an understanding of those parameters, the clinician may offer specific suggestions of the clinical interventions that are most likely to achieve goals that are important to the patient and most likely to avoid burdens or outcomes to which the patient is particularly averse.

As discussed at length elsewhere in this text, pain is a complex phenomenon that includes nociceptive, psychological, behavioral, and social components (see Chapter 4). Pain must also be distinguished from suffering, which is not directly related to the severity of physical symptoms.^7,8 As Cassell suggests, suffering is experienced by persons, not bodies, and generally stems from conditions or events that threaten the integrity of the person as a complex psychological and social entity. Absence or loss of affirmative meaning and purpose, absence or loss of control, and absence or loss of hope are major sources of suffering.⁹

In his landmark study Man’s Search for Meaning, psychiatrist Viktor Frankl analyzed experiences of his fellow concentration camp inmates at Auschwitz, in part to try to understand what distinguished those who survived from those who did not. He quotes Friedrich Nietzsche: “He who has a why to live for can put up with almost any how.”¹⁰ Analogously, for patients confronting serious or even life-threatening illnesses, the meaning (or absence thereof) of their continued life is often the strongest determinant of whether symptoms are bearable. A growing number of studies of requests for physician assistance in suicide support this insight: patients who ask for such assistance do not have higher levels of pain or other physical symptoms than those who do not make such requests. Rather, the primary concerns of many (if not most) patients asking for such assistance have more to do with issues of meaning, including the loss of a sense of any purpose in continued life, and concerns that the terminal phase of illness will involve a serious loss of personal dignity.

Biomedical efforts to control pain and other symptoms therefore constitute only a limited component of a broader effort to relieve suffering and help patients find affirmative value in the last phase of life. Nonetheless, a failure to achieve consistent control of pain and other symptoms may make achievement of any other goals quite impossible. It is obvious that uncontrolled severe pain or other symptoms can so dominate a person’s consciousness that he or she has no energy or capacity to focus on any affirmative goals or meaningful experiences. Even when pain is recently well controlled, fears that severe pain will recur and not be controllable can interfere with or even overwhelm other psychological processes. In addition, a perceived lack of control over pain often interacts synergistically with other perceptions by the patient that he or she has lost control over important parts of life, fueling a downward spiral of increasing depression and hopelessness. Conversely, the demonstrated controllability of pain not only has the direct benefit of relieving important symptoms, it can also help fuel an upward spiral of increasing optimism and hope.

A comprehensive understanding of these three distinct phenomena is vital in many areas of pain management and is covered in detail elsewhere in this text. In the palliative care setting, misconceptions about these phenomena or a lack of attention to their potential importance can significantly compromise the quality of pain management involving opioids.

TOLERANCE

Tolerance is characterized by the need to use escalating doses of a drug to maintain the same effect. When the underlying disease process is clearly stable and there is no evidence of either addiction or drug “diversion” (see the following section, Addiction), the need for increased doses can with reasonable confidence be attributed to this phenomenon. In some cases, switching to another opioid, for which a patient may have only partial cross-tolerance, can be useful. In actual practice, however, when a chronically effective dose has been well established in the treatment of a stable disease process, it is unusual for subsequent tolerance to be an important clinical problem.

In the palliative care context, however, the underlying disease process is rarely stable, and when increased doses are needed to achieve the same analgesic effect, the clinician’s primary suspicion should always be disease progression. If disease progression is in fact the cause, then further increases in the dose of the current opioid may be effective. These increases may be quite large, sometimes as high as 20-fold.^11,12

PHYSICAL DEPENDENCE

Physical dependence is characterized by symptoms of withdrawal after abrupt discontinuation of the drug and can be a severe problem in the context of chronic use of significant doses of opioids. In the palliative care context, clinicians rarely, if ever, consciously stop chronic opioids abruptly. Nonetheless, serious withdrawal syndromes can become manifest in the terminal phase of illness if the route of administration of chronic opioids is suddenly no longer available, as in the case of a patient taking opioids orally who becomes moribund and unable to swallow. In this situation, it is important to find an alternate route to administer an amount of medication sufficient to achieve both continued pain control and prevention of withdrawal. In the palliative care population, the subcutaneous route is often preferred in this scenario; the efficacy and benefits of the subcutaneous route of administration are discussed later in this chapter.