Chapter 299: Palliative Care

The goal of palliative care is to relieve the suffering of patients with serious illness. Regardless of the patient's prognosis, relief of suffering should be a primary goal for both emergency medicine and palliative care.¹ Palliative care is defined by specialty advocates as the physical, spiritual, and psychosocial care given by multiple disciplines to patients and their families who are living with life-threatening illness.² Although these principles are applicable to all stages of a patient's illness, a palliative care consultation from the ED is generally considered in the context of previously predicted end-of-life care. Hospice care, a branch of palliative care, is a comprehensive program of palliative treatment that is appropriate when patients with chronic, progressive, and eventually fatal illness are determined to have a life expectancy of 6 months or less. Palliative care is patient centered rather than disease centered. It strives to ensure that the patient or his or her (formal or informal) representatives have chosen realistic goals of care after the patient's diagnosis, prognosis, and therapeutic options have been considered. This discussion and decision making should take place during a meeting that includes the patient's healthcare team, surrogate decision maker(s), and those loved ones who are privileged to receive confidential information.

Palliative care is guided by the axiom that distressing symptoms should be treated. It thus provides expert assessment and treatment of symptoms, including pain, dyspnea, and vomiting. Pain is the most common reason for seeking care in the ED, accounting for 58% to 78% of visits in the United States.^3,4,5 Unfortunately, only 60% of patients reporting pain receive pain medications, and 74% of patients who present in pain are discharged in moderate to severe pain.⁶ Dyspnea is the sixth most common chief complaint and vomiting the ninth most common chief complaint of patients presenting to the ED⁷; statistics are not available to document the success or failure of the emergency physician's attention to alleviating these symptoms.

Palliative care also trains healthcare professionals to compassionately communicate diagnosis, prognosis, and treatment alternatives and guide the formulation of a therapeutic plan. Palliative care clinicians work to coordinate caregivers and interventions for the patient and family, to make care more effective, and to lessen the stress and obstacles for achieving satisfactory outcomes. Standards for compassionate care spelled out by the Institute of Medicine⁸ and numerous professional societies require that distressing symptoms be alleviated concurrently with all treatments directed toward the pathology of the medical disorder. The patient or surrogate must play a key role in decisions regarding care.

The subspecialty of hospice and palliative medicine was co-sponsored by the American Board of Emergency Medicine, recognized by the American Council of Graduate Medical Education, and officially approved by the American Board of Medical Specialties in 2006. In the spring of 2007, the American Board of Emergency Medicine approved the seating of duly qualified emergency physicians for the new Palliative Care Specialty. The first American Board of Medical Specialties board exam, administered in 2008, qualified the first emergency medicine physicians for practice of the subspecialty of hospice and palliative medicine.⁹

In June 2008, the American College of Emergency Physicians issued the policy statement, Ethical Issues and End-of-Life Care (Table 299-1).¹⁰ In March 2008, the Emergency Nurses Association published a position statement, End-of-Life Care in the Emergency Department, spelling out practice and leadership roles for nurses in the ED. And most recently, on November 10, 2011, The Center to Advance Palliative Care (the primary advocate for palliative care in the United States), released its Improving Palliative Care in Emergency Medicine (IPAL-EM) project. This project informs and enables EDs to develop thoughtful, creative, and streamlined programs to integrate palliative care into the day to day operation of the ED.¹¹

By implementing principles of palliative care (Table 299-2), emergency physicians will become better skilled at assessing patients' preferences and health status to determine whether initiating aggressive therapy is both concordant with the patients'/surrogates' preferences and potentially beneficial. Patients already receiving a palliative care approach will be able to have their existing care plan continued in a coordinated fashion when presenting to the ED for worsening symptoms, although they would be more optimally managed as outpatients.¹²

In 2006 in the United States, 36% of people who died were receiving hospice care at the time of death, and a total of 1.3 million people received hospice care in 2006. Although hospice was initially designed for cancer patients, 53.6% of patients enrolled in hospice in 2005 had a noncancer diagnosis. About 58% of U.S. residents die in an acute hospital setting.¹³

In 2002, there were 12.7 million people aged >65 years in the U.S.¹⁴ In 2030, there will be over 72 million elderly people. The Hospitalized Elderly Longitudinal Project study found that the very elderly (>80 years) are most likely to want and to consider comfort care as the best option when facing serious chronic illness.¹⁵ The surge in growth in the aging population will increase the demand for quality palliative care.

The U.S. healthcare enterprise is facing a large crisis due to the high cost of health care, particularly Medicare. Approximately 30% of healthcare costs occur in the last 6 months of life. Data from the Health and Retirement Study showed that 51% of those over age 50 visit the ED during their last month of life, 77% of those are admitted to the hospital, and 68% of those admitted die during their hospital stay.¹⁶ A meta-analysis published in 1999 found that the use of hospice saved as much as 40% of healthcare costs during the last month of life, and 17% over the last 6 months of life.¹⁷ A subsequent study found that hospice care reduced Medicare costs during the last year of life by an average of $2309 per hospice user.¹⁸ Admitting eligible patients to hospice is one promising route for addressing the quality/cost chasm.¹⁹

Currently, only 4% to 7% of hospitalized patients are referred to palliative care or hospice directly from the ED.^20,21,22 The average time in the hospital before transfer to a palliative care bed is 5 to 9 days.^21,22

In 2011, the Center to Advance Palliative Care released its Improving Palliative Care in Emergency Medicine program, a program that provides a thoughtful approach to palliative care practice in the ED, formulated for and by emergency clinicians. The program covers all aspects of palliative care in the ED.¹¹ Emergency physicians have enthusiastically received the Improving Palliative Care in Emergency Medicine program,¹¹ despite expressing concerns about the challenges facing them when discussing palliative or hospice care with patients such as interruption of workflow, lack of long-term relationships with patients, and lack of training to facilitate interactions.²³

Palliative care needs include the management of a cluster of technologies associated with diagnoses of advanced, frequently incurable conditions.²⁴ Patients whose long-term care needs are complex and require skilled nursing care for transfusions, tracheostomy care, or infusions of antibiotics or inotropes are likely in need of palliative care, especially if the disease is progressive.

FUNCTIONAL DECLINE

Functional decline is the loss of the ability to care for oneself. This ranges from the loss of complex abilities, like driving, shopping, and managing finances, to basic activities like ambulating to the bathroom and getting safely out of bed. The loss of activities of daily living is the cardinal feature of decline, especially if accompanied by unintentional weight loss, and indicates the need for increased care assistance and suggests a short life expectancy.

PROGNOSIS

Space in this textbook does not allow for a comprehensive discussion of formulating a prognosis and how to share it with patients and families. There are several key diagnoses and prognostic findings that are extraordinarily helpful to understand. Patients with chronic, progressive, life-threatening diagnoses will almost always benefit from palliative care. Those with extensive disease, be it metastatic cancer, organ failure, or neurologic deterioration (with anorexia/cachexia and decreased self-care) are frequently on a dying trajectory.²⁵ Examples of diagnoses of patients who may benefit from palliative care are listed in Table 299-3. A predictive instrument known as the Palliative Prognostic Score correlates with prognosis.²⁶ Elements of the Palliative Prognostic Score include ability to ambulate, provide self-care, and maintain oral intake, and level of consciousness. A bed-bound patient completely dependent for all care with reduced oral intake and a diminished level of consciousness has a Palliative Prognostic Score of 10% and a 1-week median expected survival.²⁶

REFRACTORY AND COMPLEX CONDITIONS

Multiple visits to the ED for the same condition generally indicate that the plan of care is failing. There may be many reasons for this, but the overall indication is that the patient is becoming resistant to physician-led interventions, and this suggests the potential benefit of palliative therapy.

DETERMINING PATIENT DECISIONAL CAPACITY AND IDENTIFYING SURROGATE DECISION MAKERS

The ED team should immediately identify the decision makers when a debilitated patient arrives in crisis to the ED. A patient with decisional capacity is one who has the mental ability to grasp and retain information about his or her condition, weigh risks and benefits, and demonstrate these abilities by verbalizing a medical decision²⁷ (see chapter 303, "Legal Issues in Emergency Medicine," for a more detailed discussion of patient capacity). Table 299-4 lists phrases to aid meaningful communication with patients and families.²⁸ If the patient lacks decisional capacity, then the patient's advance directive should be accessed and the named surrogate decision maker should be contacted as soon as possible. If none of these resources are available, then the closest family member(s) should be consulted regarding the plan of care. If no one is available to speak for the patient, then the treating physician should act in the patient's best interest. This may include an order to "do not resuscitate" the patient if it is clear that aggressive therapy would not be beneficial.

FAMILY MEETING

Once the physician has determined the patient's decision-making capacity, chronic health status, a clinical diagnosis for the current visit, and a general understanding of the patient's care preference, the doctor and team are prepared to have an abbreviated family meeting with the decision maker(s) to discuss the approach to care. The physician must be clear in his/her own mind whether there is any available therapy that will restore the patient's health; have access to the advice of consultants, specialists, and the patient's primary care physician; and be prepared to issue honest, compassionate, and helpful recommendations based on his/her own assessment.

A productive approach to start such meetings is to ask the surrogate decision maker what he or she understands about the patient's past health and current condition (see Table 299-4). After patiently listening, the physician should share his or her insight into the patient's condition and prognosis while monitoring the family's reaction to determine whether the ED team and the family are in agreement. An example of a physician's opinion in a particular case follows: "Your mother's advanced medical condition cannot be cured, and her illness has made her defenseless against the bacteria in her own body. Treating her again and providing another round of intensive care will not bring her health or immune system back to normal, but may only prolong her suffering."

The next step is to ask the surrogate decision makers whether they know about the patient's values and preference for care, for example, how their mother would wish to be treated in the current circumstances. If the answer to that is unknown, ask how the surrogate decision makers would wish to be treated if they were in the same condition.

Based on the response to these questions, the plan of care should be negotiated and jointly affirmed. If the patient decision maker(s) indicate that they must have full resuscitative efforts despite your reservations, you can explore that thinking with them, although it would be best to provide symptom-blunting treatment (such as opiates) along with intubation or central line insertions.

Cultural difference should be taken into account when discussing treatment options with patients and families, including religious preferences. African Americans are more likely to select aggressive treatment options and less likely to select hospice care than non-Hispanic whites.²⁹ Reasons cited for end-of-life preferences among African Americans facing these decisions include historical mistrust toward the healthcare system and the importance of spirituality.²⁹

CODE STATUS

Do not resuscitate (DNR) is a medical order, like intubation, oxygen, or IV fluids. Although a DNR order can be written by the physician without the agreement of a surrogate or family member, the order must be in accord with state law and hospital policy. However, DNR status or other limitations of resuscitation should evolve directly from harmonious decisions reached at the family meeting. Code status orders should be written on every patient justifying the particular approach recommended. There is no ethical obligation to provide ineffective and burdensome care.³⁰ Families are often grateful when a physician compassionately recommends treating a patient with comfort measures rather than prolonging his or her suffering with nonbeneficial interventions.

The Center for Ethics in Health Care at Oregon Health & Science University developed the Physician Orders for Life-Sustaining Treatment in 1995.³¹ Since then, the program has expanded to 13 states, with 21 more states currently developing similar programs. This brightly colored form allows a patient to effectively communicate his or her wishes and have those wishes documented as a transporTable medical order that is valid across all healthcare settings (ED, nursing home, community). The Physician Orders for Life-Sustaining Treatment form is helpful in initiating conversations about treatment preferences and can prevent unwanted resuscitations by EMS.³¹

CONSULTATION OPPORTUNITIES

Palliative care consultation services are likely available at your hospital and should be used just as you would any specialist consultation. ED consultation can provide assistance when conducting a family meeting or when access to an inpatient hospice or palliative care unit is needed. When symptom relief, medical decision making, or disposition and coordination of care are beyond your expertise or available time, a consult is appropriate. Notify the patient's attending physician of the consultation if time allows.³²

The most common targets of symptom management are pain control, dyspnea, nausea/vomiting, constipation, and agitation.

PAIN CONTROL

Acute and chronic pain are addressed elsewhere in detail (chapters 35 and 38, respectively). The biggest obstacle to aggressive pain management with opiates has been the fear of respiratory depression. Opioid dosing is reviewed in chapter 35, "Acute Pain Management," and is an essential skill in the practice of emergency medicine. It is also important to understand the progression of side effects from opioids, because these will serve as warnings to reduce the dose or delay the next dose of opioids. Respiratory depression is not a sudden occurrence, but instead is part of a progression that starts with sedation, somnolence, and then respiratory depression.³³ The safety of patient-controlled analgesic devices is predicated on this concept. A patient can be safely dosed and redosed until the pain is palliated, as long as level of consciousness is monitored. IV opiates reach maximum therapeutic levels and have peak effects/side effects at 6 to 10 minutes. Therefore, IV pain medications can be safely redosed every 15 minutes until relief is reached if potential adverse effects are monitored.

DYSPNEA

While identifying the cause of dyspnea and treating the underlying pathology may bring definitive relief, treatment should also be offered to palliate the symptoms. Although opioids have traditionally been withheld due to concerns about respiratory depression, opioids are beneficial in treating the agitation and anxiety provoked by dyspnea.³⁴ When treating breathlessness/dyspnea in an opioid-naïve patient, start with a dose of morphine 0.05 milligrams/kg IV, and monitor for sedation and hypoventilation. This is half of the starting dose of morphine when it is used to treat pain. Use a goal of maintaining a respiratory rate of at least 10 to 12 breaths per minute.

NAUSEA/VOMITING

Understanding the underlying cause of nausea can help identify the class of antiemetic drugs most likely to be therapeutic. Chemotherapy-induced nausea often responds to high doses of serotonin 5-hydroxytryptamine-3 antagonists such as ondansetron. Corticosteroids such as dexamethasone also may improve nausea from chemotherapy. Steroids can also improve symptoms caused by increased intracranial pressure and bowel obstruction from cancer. Dopamine antagonists such as haloperidol or droperidol are used for refractory nausea in the palliative care setting. Metoclopramide is excellent for the symptoms of diabetic gastroparesis or compression of the stomach due to tumor or ascites.

CONSTIPATION

Constipation is a commonly seen side effect in patients on opiates for pain control. Patients prescribed opiates need a concurrent bowel regimen, such as an osmotic agent (i.e., polyethylene glycol) or stimulant laxatives. A digital rectal exam is also important to rule out a suspected fecal impaction. When evaluating a patient for constipation, an abdominal radiograph can help to evaluate the amount of stool and lower the index of suspicion for bowel obstruction.

AGITATION

Patients with terminal illness may become agitated, with or without delirium. The causes of this agitation are multifactorial, including pain, effects of the terminal illness, anxiety, terminal restlessness, breathlessness, and mental anguish. The indicated class of medications varies depending on the situation but includes antipsychotics such as haloperidol, anxiolytics such as midazolam, and opiates such as morphine. There is no evidence that these palliative interventions hasten death.³⁵

Although the majority of patients consulted to palliative care services from the ED will be admitted to the hospital, outpatient treatment is always an option, depending on the resources available and the patient's needs.

OUTPATIENT PALLIATIVE CARE REFERRALS

Many hospitals and medical groups are accelerating the fielding of outpatient palliative care teams. Such teams are a resource for you, your patient, and family caregivers for appropriate care and follow-up, including measures that will prevent return ED visits, by providing effective care at home or in a nursing facility.³⁶ It can take a hospice referral to prevent readmission from a nursing home for a patient with advanced dementia, persistent vegetative state, or disabling stroke, so consider recommending hospice admission to the admitting physician to facilitate instituting palliative goals and care plans for the patient.

HOSPICE REFERRALS

Patients who qualify for the hospice benefit should be aware of these outstanding programs of care for the physically declining patient. Inpatient hospice units, where patients can be directly admitted, provide a good option for care and rapid ED disposition if available at your hospital.³⁷ Not all families are eager to hear the word "hospice," but such a recommendation should be phrased in a way that sends a message about your concern for the patient and his or her health status.

Patients are eligible for hospice care by Medicare regulations if they wish to take a palliative approach to their condition and if they have a prognosis that, in the judgment of two physicians, is likely ≤6 months, given the usual and natural course of the illness. Hospice referrals can be made from the ED for patients with qualifying debilitating illnesses, such as dementia with sepsis or stage IV cancer with poor performance status. Referrals also can be made for patients with clearly expressed prior wishes for comfort care should they sustain a catastrophic acute illness, such as those with an intracerebral bleed, infarcted bowel, devastating neurotrauma, or renal failure in the advanced heart failure patient, leading to multiorgan failure.

IMMINENT DEATH

It is common in the ED to receive a patient whose death is likely imminent. Such a patient has entered the process of multiorgan failure due to a disease such as sepsis, vascular crisis, uremia, or metastatic cancer. Vital signs indicate a patient in extremis; breathing may be irregular with pauses; a Foley catheter finds an empty bladder or only a small amount of concentrated urine. The assessment that a patient's death is imminent should be communicated to family members and the primary care physician. Agreement should be sought to offer comfort measures only. Opiate infusions plus intermittent or infused midazolam should be initiated and titrated to patient comfort. Delirium therapy can be directed to underlying cause (pain, fever) or, if not known or reversible, treated with 0.5- to 5-milligram doses of intravenous haloperidol. A total dose of 5 milligrams can produce a calming effect on a patient and, by extension, his or her family.

OPIOID DOSING AND ROTATION

In the opioid-naïve (hydrocodone, oxycodone, morphine, hydromorphone, and methadone) patient, a 2-milligram dose of IV morphine or a 0.5- to 1-milligram dose of hydromorphone is a reasonable starting dose. This should be administered every 15 minutes until the pain is relieved by approximately 50%. Dose stacking will produce additional, cumulative effects when the doses have all been distributed to the μ-receptors. In the opioid-tolerant patient, the average 4-hourly dose of opioids already prescribed should be doubled for severe pain and increased by 50% for moderate pain (pain scale score of 4 to 6).³⁸ Smaller doses are required in elderly patients, those with a low body mass index, patients with unsTable vital signs, or those with baseline severe cardiorespiratory compromise (e.g., chronic obstructive pulmonary disease) because such patients are at risk for hypoventilation.

CARE OF THE PREVIOUSLY DESIGNATED HOSPICE PATIENT IN THE ED

Occasionally, hospice patients may be directed to the ED. The three most common scenarios are (1) a hospice patient with an acute symptom crisis (2) a hospice patient who has a health concern unrelated to the hospice diagnosis; or (3) a patient who has previously revoked and signed out of hospice and presents to the ED.

A patient enrolled in hospice may be hospitalized under the care of hospice (general inpatient hospice) if there is an acute symptom crisis related to the hospice diagnosis. An inpatient setting can allow for more aggressive treatment of symptoms such as a pain crisis, new onset dyspnea, or other concerning symptoms. A patient may also be sent to the ED for a new medical issue unrelated to the hospice diagnosis. For example, a patient admitted to hospice for refractory heart failure may fall and fracture a bone. The fracture is unrelated to the hospice issue.

A patient may revoke hospice care at any time for any reason, and may present to the ED for aggressive treatment rather than a palliative approach. Occasionally a patient or family may panic and call 911 when there is a change in the patient's health status. The ED physician should care for the patient as appropriate. It can be very helpful to contact the patient's hospice agency. Someone should be available 24 hours a day and may be very useful in helping to clarify the patient's goals and disposition.

Clinical practice guidelines have been published by the Improving Palliative Care in Emergency Medicine project, and can be found at: http://ipal-live.capc.stackop.com/downloads/ipal-em-clinical-practice-guidelines.pdf