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Hospice care is the only specialty in medicine that does not have healing as its goal. Neither a specific intervention nor a location, hospice is the prototype of comfort care support for patients and their families as death surely approaches, and even after. It is simply intensive palliative care steps that do not prolong dying. Only patients with end-stage illness and survival expectancy of 6 months or less are eligible to be a part of the nation's 3200 hospice programs. The 4 care levels of hospice?routine home care, continuous home care, general inpatient care, and family respite care?seek to improve comfort and quality of life at life's end (see sidebar).
The Pharmacist's Role
Five rules guide hospice care:
The work of a hospice pharmacist is perhaps the most patient-driven pharmacy specialty. Hospice patients and loved ones tend to be actively involved in treatment decisions. Each hospice patient presents unique, mercurial symptom clusters, often including pain, weakness, dyspnea, anorexia, constipation, early satiety, fatigue, and dry mouth.4,5 Because treatment is palliative and time is short, creative aggressive medication regimens are crucial. As allowed by the FDA, physicians use FDA-approved drugs for any reasonable purpose.5 Often, clinicians ask themselves, "Can this symptom be treated without medication?" If not, they continue, "Can one of this patient's current medications be adjusted to address the symptom?" or "With death this close, is this medication really needed?"
Despite available and effective treatments, some generalists assess pain poorly, hesitate to prescribe opioids, and hold inaccurate assumptions about pain tolerance and drug dependency.6 Hospice providers take reasonable pain-management efforts. Their actions are bolstered by federal guidelines and many states' laws affirming patients' rights to effective pain management. A clinician's knowledge gaps or poor attitude will not excuse failure to dispense a controlled drug to hospice patients.5
Pain often has multiple causes: soft tissue injury, tumors, bone infiltration, and nerve damage. Because patients' pain thresholds differ, no standard protocol exists. Most hospice programs follow the World Health Organization's 3-step analgesic ladder, which provides relief for 70% of patients:
Opioid doses are not reduced solely for hypotension, decreased respiratory rate, or consciousness; optimal comfort defined by patient preference is the goal. Oral administration is preferred, because needle sticks are to be avoided, but access to medication is never denied even if the patient can take nothing by mouth.9 Additionally, 40% of patients find relief from localized bone pain with radiation therapy.8 Adjunctive agents such as amitriptyline and gabapentin help manage other symptoms.10 At all times, patients should have a sense of control.9
Patients sometimes plead for rapid death if pain or symptom management is inadequate.11 In cases of retractable pain, the American Academy of Pain Medicine's position is unequivocal: "In rare circumstances, when pain and suffering are resistant to treatment, sedation may be therapeutic and medically appropriate to obtain relief if consistent with the express wishes of the patient."12
End-stage intravascular problems often lead to fluid imbalance and edema. Nausea and vomiting also contribute to imbalances. Rehydration therapy can worsen edema and lead to skin breakdown.10 Practices such as good mouth care (sometimes with hydrogen peroxide or KY Jelly) or offering small amounts of liquid or ice chips are often used as alternatives to intravenous (IV) therapy.10 Sometimes, however, IV hydration can hasten excretion of drug metabolites and provide relief.9
Dyspnea, affecting up to 70% of hospice patients, is a frightening experience. Labored breathing, breathlessness, and gasping suggest hypoxia, but most hospice patients are not hypoxic. Supplemental oxygen may provide little relief. Causes are often related to pulmonary edema, obstruction anemia, electrolyte imbalance, cardiac decompensation, respiratory failure, anxiety, and lymphangitis. If possible, underlying causes should be corrected. Keeping the room cool, employing stress-management techniques, and helping the patient relax also help. Clinicians often prescribe lowdose opioids and anxiolytics (usually benzodiazepines) to relieve dyspnea.3,4,9
Delirium?an acute state of confusion, disorientation, and severe cognitive impairment?may be drug-induced or a consequence of dyspnea, hepatic insufficiency, vitamin deficiencies, or hypoalbuminemia.4 Medications or medication withdrawal may cause drug-induced delirium (see the Beers Criteria for Potentially Inappropriate Medication Use in Older Adults).13 Haloperidol, risperidone, olanzapine, and lorazepam are often helpful. Clinicians might select a more sedating neuroleptic for bedridden patients.9
Many terminal diseases end with cachexia or wasting. Prevalence varies with pathology; lung cancer and AIDS often cause cachexia, but breast cancer rarely does. Poor appetite, muscle wasting, and altered metabolism respond poorly to nutritional and parenteral nutrition interventions.4,14,15
Agents that increase protein synthesis and decrease proteolysis often are helpful, including the chemotherapeutic agent gemcitabine, corticosteroids (which improve anorexia but not cachexia), progestin (coupled with exercise), and thalidomide.10 Insomnia, pain, nausea, and profuse sweating also may respond to thalidomide.16
Imminent death is heralded by a plethora of problems: constipation, diarrhea, skin breakdown, infections, and weakened immunity. Each terminal illness presents its own symptom constellation, many of which are iatrogenic. Not all problems are physical; anger, depression, and anxiety are common and minimize quality of life. Anxiolytics and antidepressants fortify psychological supports, but fast onset of action is imperative. For this reason, clinicians often prefer methylphenidate over agents requiring weeks to achieve maximum clinical impact.10
Providing end-of-life care can be difficult but rewarding. The use of pharmacotherapy for comfort care is a unique skill set that is growing in demand. Aggressive dosing, creative regimens, and off-label use usher unique patients to certain death but allow dignity.
Dr. Zanni is a health-systems consultant and a former commissioner of mental health for the District of Columbia. Ms. Yeznach Wick is a senior clinical research pharmacist at the National Cancer Institute, National Institutes of Health. The opinions expressed are those of the authors and not necessarily those of any government agency.
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