Defining Palliative Care
Palliative care is defined by the World Health Organization as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” The field of palliative medicine was developed over the course of the late 20th century in response to increased awareness of the impact of suffering on quality of life in a context of care previously divided into disease-directed therapy or comfort care. Dame Cicely Saunders, one of the founders of the field, described four broad domains of palliative care: physical, i.e., symptoms; psychological; social; and spiritual. Palliative care can be delivered across a multitude of care contexts and by a variety of providers and should be viewed as distinct from hospice, defined later. Palliative care is also referred to in some contexts as supportive care.
According to some estimates, approximately 75% of patients approaching end of life would benefit from palliative care. Estimates of future needs suggest a 40% increase in these needs by 2040, driven predominantly by dementia and cancer. Illnesses treated by palliative care teams include heart disease, cancer, stroke, diabetes, renal disease, Parkinson’s disease, and Alzheimer’s disease.
The Multidisciplinary Team
One of the focal components of palliative care delivery is the multidisciplinary team model, which is designed to provide comprehensive symptom management and to address psychological, social, and spiritual needs. Although the specific members may vary by institution, a palliative care team often involves the patient and their supporters, a palliative physician, other providers on the patient’s care team, a nurse, social worker, pharmacist, and chaplain as well as volunteers. Physical and occupational therapists and dietitians are also frequently incorporated onto palliative care teams.
Palliative Care and Hospice
Whereas palliative care can be implemented at any stage in care, the term “hospice” specifically describes noncurative, comfort-targeted care delivered to patients nearing the end of life. Patients referred to hospice have a life expectancy of 6 months or less as assessed by two physicians. Many features of hospice care, including a multidisciplinary care team and a focus on comprehensive symptom management, are shared with palliative care; however, patients enrolled on hospice care no longer receive disease-directed therapies targeting their life-limiting illness. Hospice care is traditionally delivered in the home but can also be provided across a variety of other settings, including inpatient units and nursing homes. In the United States, hospice care is funded through a provision in Medicare. A comparison of palliative care and hospice is seen in Table 43.1 .
|A medical specialty||An insurance benefit|
|Appropriate at any time during a serious illness, independent of goals or prognosis||Appropriate when two or more physicians determine likely prognosis of 6 months or less|
|Continued curative or life-prolonging therapies available||Goal of comfort-focused care|
|Can follow the patient anywhere||Provided at home, in a long-term care facility, or at an inpatient hospice|
Primary versus Specialist Palliative Care
Although palliative medicine is a dedicated medical subspecialty, many of the basic domains of palliative care can be delivered by all providers. Primary palliative care has been defined as “the basic [palliative] skills and competencies required of all physicians and other health-care professionals.” In a seminal 2013 paper, Quill and Abernethy describe a series of skill sets that all clinicians should be capable of delivering, including basic management of pain, depression, anxiety, and other symptoms as well as basic discussions about prognosis, goals of treatment, suffering, and code status. Specialist consultation is recommended for guidance regarding management of refractory physical or complex psychological symptoms as well as for assistance with management of conflict among stakeholders and in cases of near-futility ( Table 43.2 ). These recommendations are congruent with consensus statements from the Center to Advance Palliative Care (CAPC), which further recommend that hospitals should develop screening assessments to identify unmet palliative needs in patients.
|Primary palliative care||Specialty palliative care|
|Basic pain and symptom management (including depression and anxiety)||Refractory pain and symptoms; complex depression, anxiety, grief, existential distress|
|Routine discussions about:||Conflict between families, staff, and medical teams related to goals or treatments|
|Delivered by primary provider||Ethical challenges or cases of near futility|
|Delivered by specialized, multidisciplinary team|
According to a recent study, some 8% of American adults aged 65 years or older would benefit from primary palliative care for management of advanced chronic illnesses, predominantly chronic obstructive pulmonary disease (COPD) and congestive heart failure (CHF). Palliative-focused organizations such as CAPC, Vitaltalk, and Ariadne Labs have developed tools designed to inform and improve primary palliative care delivery by providing a paradigm for introducing difficult topics and decisions. Two examples of such tools are depicted in Table 43.3 .
|Discussing bad news: SPIKES||Addressing goals of care: REMAP|
Advance Care Planning
Advance care planning describes the engagement of patients and their family members around decisions that may need to be made regarding their current and future medical care. This process frequently includes discussion of current and anticipated medical needs with elicitation of the patient’s preferences for utilization of life-sustaining treatments; for example, cardiopulmonary resuscitation, prolonged mechanical ventilation, artificial nutrition and hydration, or comfort care. These preferences may be codified in the form of an advance directive. Palliative care providers may initiate or assist in advance care planning, particularly in complex or conflicted situations.
Patients with life-limiting illnesses frequently experience a combination of symptoms, the nature of which may vary over the course of their illness. Disease-specific symptomatology is addressed later by disease. Table 43.4 describes symptoms and management strategies in detail. Table 43.5 specifically addresses management of cancer pain.
|Symptom||Pharmacologic therapies||Nonpharmacologic therapies|
|Anorexia||Megestrol (may increase risk of thrombus in patients in procoagulant states) |
Cannabinoids (nabilone and dronabinol)
|Patient/family counseling regarding expectations|
|Anxiety||Benzodiazepines, SSRIs, SNRIs, atypical antipsychotics (second line)||Supportive psychotherapy |
Treatment of physical etiology
Discontinuation of anxiety-inducing medications (e.g. corticosteroids, baclofen, caffeine, methylphenidate)
|Constipation||Laxatives (emollient stool softeners), bulk-forming agents, osmotic agents, prosecretory drugs, selective opioid-receptor antagonists (e.g., methylnaltrexone, naloxegol)||High-fiber diet, increase fluid intake, discontinue/reduce doses of constipating medications (anticholinergics, opioids)|
|Delirium||Typical/ atypical antipsychotics, benzodiazepines (terminal delirium)||Reorientation, optimization of sleep–wake cycle, limitation of environmental stimuli|
Stimulants (in end-of-life patients); mirtazapine; trazodone; bupropion
|Supportive psychotherapy, dignity therapy|
|Dry mouth||Oral swabs and coating agents, discontinuation of triggering agents (antihistamines, anticholinergics)|
|Dyspnea||Opioids (decrease respiratory drive) |
Benzodiazepines (reduce anxiety)
Bronchodilator therapy (COPD)
|Supplemental oxygen (evidence is mixed) |
Steroids (for end-stage/hospice patients only)
|Nausea||5HT-3 receptor antagonists, antimuscarinics, antidopaminergics, neurokinin-1 receptor antagonists, cannabinoids, corticosteroids, benzodiazepines||Gastric decompression, discontinuation/rotation of nausea-inducing medications (opioids)|
|Pain||Opioids, NSAIDs, neuropathic agents |
(see Table 43.5 for more detail)
|Disease-directed therapies (chemotherapy/radiation/surgery/diuresis), physical therapy, complementary therapies (e.g., music therapy, massage)|
|Pruritis||Antihistamines, opioid antagonists (nalbuphine, naloxone)||Treatment of uremia (dialysis) |
Discontinuation of stimulating agents/opioid rotation
|Pain type||Etiology||Description||Example||Therapeutic options|
|Visceral||Distension/displacement/inflammation of solid and hollow organs||Diffuse, cramping, difficult to localize, may be referred||Abdominal pain from intraabdominal malignancy causing partial/complete bowel obstruction||Opioids, corticosteroids in some cases, treatment of etiology|
|Somatic||Compression/injury of muscular, bony and integumentary tissues||Aching, dull, easily localized||Back pain caused by spinal metastases||Opioids, NSAIDs/anti-inflammatory agents (including corticosteroids)|
|Neuropathic||Injury of nerve tissues (related to compression/infiltration by tumor; often treatment-induced)||Radiating, burning, may be associated with paresthesia||Radiating/ burning upper extremity pain in setting of tumor infiltration of brachial plexus||Neuropathic agents (gabapentinoids, SSRIs, SNRIs, tricyclic antidepressants), opioids (especially methadone), ketamine|
Approaches to end-of-life care may vary by patient and disease, but, broadly, fall under the more general palliative domains of management of symptoms, spiritual, psychological, and social distress. End of life care may involve aggressive symptom control, family counseling, and/or discussion of goals of care depending on the specific clinical context. Specialist palliative care consultation is recommended for patients with refractory symptoms, severe existential distress, complex psychological, social or familial needs.
Impact on Outcomes
Palliative care interventions have been demonstrated to have a positive impact on a variety of health-care domains, ranging from quality of life and symptom management to length of stay and costs of care. In a randomized controlled trial of standard oncologic care versus oncologic care with integrated palliative care, Temel and colleagues demonstrated that patients receiving palliative care reported higher quality of life and reduced depressive symptoms. Although patients in the palliative care group were less likely to elect aggressive end-of-life care, median survival was longer in this group. Other studies have demonstrated similar findings with regard to increased life expectancy with early initiation of palliative care in oncology patients. Proactive palliative care in the medical intensive care unit (ICU) has been demonstrated to reduce ICU length-of-stay. Brumley and colleagues randomized 298 terminally ill patients to usual care versus in-home palliative care and demonstrated significant improvements in satisfaction with care as well as increased rates of death at home, reduced emergency room and hospital admission rates, resulting in reduced costs of care in that population. Numerous other studies have demonstrated that palliative care can significantly reduce costs of care and resource utilization across a variety of inpatient settings. Further discussion of the impact of palliative care on outcomes is incorporated into discussion of disease-specific palliative care in a later section.
Palliative Care for the Surgical Patient
Successful models for palliative care delivery and quality improvement in medical ICUs have been described, demonstrating, among other benefits, shorter medical ICU length of stay for high-risk groups. However, the applicability of these models in the surgical ICU setting has not been fully addressed.
Despite intensive research in the past two decades on the prediction of survival in ICU patients, palliative care has not been an integral part in caring for postoperative ICU patients. This is problematic because patients of advanced age and those with significant comorbidities are increasingly undergoing major surgery and receiving care in surgical ICUs. With improvement in both intraoperative anesthetic and surgical care, it is not uncommon for physicians to care for patients who have had technically successful surgeries, but have multiple comorbidities, which significantly decrease physiological reserve and increase the likelihood of postoperative complications. Many patients encounter end-of-life issues in the surgical ICU, but the specific characteristics of patients with surgical disease, the practice of surgical critical care, and the practice of surgeons create a specific set of challenges to the integration of palliative care in the surgical ICU.
During the perioperative period, patients, families, and surgical caregivers often have high expectations for recovery, believing that surgical intervention will improve the patient’s condition. Such expectations make it more difficult to establish realistic prognoses, treatment goals, and plans in the event of therapeutic failure. Special circumstances in the surgical ICUs further underscore this issue. Emergency general surgery has a disparate burden of risk from medical errors, complications, and death compared with nonemergency general surgery. In fact, emergency general surgery is an independent risk factor for death and postoperative complications. In the trauma ICU, the mortality for critically injured patients averages 10% to 20%, and survivors often face serious and permanent disabilities. Yet, because many patients are young and they and their families are unprepared for such devastating events, the providers’ treatment plan is often aggressive resuscitation. The integration of palliative care in this situation is particularly challenging.
The structural organization of the surgical ICU creates another barrier to integrating palliative care models. Medical ICUs primarily follow a “closed model” of care, where the intensivist is the primary provider. However, surgical ICUs more often utilize an “open or semi-closed model” in which the primary surgeon retains the primary care responsibility throughout the critical illness. Historically, surgeons had individual control over patient care; in a typical surgical team, authority was hierarchical, with major decision-making concentrated at the highest level. In the open or semi-closed model of surgical ICUs, the intensivist in the surgical ICU oversees daily critical care issues, but the primary surgeon determines the overall goals of care. However, because surgeons spend a great deal of the day in the operating room, patient care rounds often do not involve the full interdisciplinary team. This causes a problematic situation where surgical critical care is occurring at the bedside often without the attending surgeon, who ultimately will make all of the major decisions.
Surgical culture also influences the integration of palliative care in the surgical ICU. Preoperatively, surgeons often develop a contractual patient relationship for the perioperative period that has been termed “surgical buy-in.” According to Pecanac and group, surgeons “preoperatively establish the patient’s commitment to an operation as well as to the ensuring postoperative care, including prolonged life-supporting treatments.” This buy-in is seen as a commitment made by both the surgeon and the patients to make it through the operation as well as the postoperative period. It has been described as a “covenantal” relationship that is different from nonsurgical physician-patient’s relationships. Its emphasis on cure is critically influenced by the surgeons themselves. The covenant creates a strong sense of obligation for the surgeon to protect the patient during the perioperative period. The patient is seen by the surgeon as mutually committed to “undertake and endure all sequelae, including a protracted course with uncertain prospects for return to an acceptable quality of life.”
The life-saving attitude of surgery has propagated a view of intensive care and palliative care as mutually exclusive methods in the treatment of the critically ill. Thus, palliative care is often seen as the consequence of failure of surgical and critical treatments that were meant to prolong life. These ideals are grounded in a surgeon’s sense of personal responsibility for outcomes and “fear of being ‘the agent’ of a patient’s death.” This responsibility can lead to emotional distress—especially for elective surgeries, where success is expected—which may cause the surgeon to refuse to consent to withdrawal of life support despite patient and/or family requests to do so. As health-care quality services increasingly move to use surgical morbidity and mortality as indicators, the surgeon’s sense of personal failure is reinforced. For instance, the Society of Thoracic Surgery created a national US database with detailed risk-prediction models for various cardiac surgeries with an aim to improve quality, to provide feedback on patient care guidelines, and to standardize performance measures. Some states also publish surgeon- and institution-specific mortality after cardiac surgery. Although the intention is for quality improvement, it also leads to a “shame-and-blame” public reporting. This affects the acceptance of dying as a phase of life and may further negatively impact the integration of palliative care models into the surgical ICUs.
For these reasons, improvement in the integration of palliative care with surgical ICU settings requires acknowledgement and sensitivity to the surgeon’s unique role and finding strategies to strengthen the relationship between the attending surgeon and the other members of the multidisciplinary team. Previous studies have shown that the success of any effort to improve quality of care in the ICU depends on active participation and empowerment of critical care nurses. Especially given the open or semi-closed nature of the surgical ICU, a nurse practitioner on a surgical team may be able to help bridge the gap between the surgeons and the ICU intensivists.
Other studies have evaluated the implementation of a mandatory checklist to improve compliance with a range of evidence-based critical care practices. Byrnes et al. created a checklist that included a review of end-of-life issues, including plans for family meetings and orders that addressed appropriate levels of care. They found that a mandatory verbal review of the checklist at the patient’s bedside effectively affected practice patterns. Other studies reported similar success with checklist tools demonstrating that routine reminders can enhance awareness and practice by providers.
Many other studies have looked at developing guidelines to help identify critically ill surgical patients who would benefit from palliative care or “trigger criteria.” In most surgical ICUs, referral for palliative care consultation depends on decision-making by individual primary physicians, which, as listed previously, is often the attending surgeon. This leads to a referral process that may be inconsistent and/or inefficient, and ultimately creates the potential for patients to have unmet palliative needs. Mosenthal and group suggested that utilizing specific triggers may help screen patients proactively and systemically. Screening patients in this way could increase the “timeliness, consistency, and frequency of referrals for appropriate patients and family members.” There have been numerous efforts at development of trigger criteria for surgical ICUs, including those by the American College of Surgeons Surgical Palliative Care Task Force and a consensus panel of surgical palliative care experts. However, retrospective studies demonstrated that the intervention did not significantly change the number of palliative care consultations or the rate of consultation for surgical ICU patients dying in the hospital. Mosenthal also suggests that trigger criteria in the surgical ICU specifically may be more successful if the criteria are applied to “certain diseases (e.g., cancer treated with gastrectomy or esophagectomy), surgical services (e.g., cardiovascular, transplant, trauma), or complications (e.g., prolonged respiratory failure.)” They also suggest that a specific, criteria-based mandatory referral model, as opposed to deferral to the primary surgeon, may promote integration of palliative care in the surgical ICU. The complexities of palliative care delivery in surgical patients is further detailed in Table 43.6 .