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Care at the End of Life 

Care at the End of Life
Chapter:
Care at the End of Life
Author(s):

Adam D. Marks

DOI:
10.1093/med/9780190862800.003.0003
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date: 26 October 2020

  1. A. Introduction

    1. a. Advances in medical care mean that more adults are living longer with serious, life-limiting diseases, which has made the approach to end of life more complicated for many people. Despite national efforts, almost 50% of the American population will die in an acute care setting. This section will review care for hospitalized patients at the end of life.

    2. b. While medical management of a dying process is important, providers should ensure they are not overlooking the often complex psychosocial or spiritual aspects of care involved in a dying process. Involving members of the interdisciplinary team (social work, spiritual care) can be of critical importance for patients approaching the end of life.

    3. c. Predicting the time of death is difficult, but certain signs indicate that death is approaching. Educating families about what to expect during the dying process can help reduce anxiety and prepare them for a natural end of life process.

      1. i. When patients with progressive diseases become profoundly weak, bed-bound, confused, and/or unable to take oral medications or more than a few sips of water, they may have days to live.

      2. ii. When patients experience a rapid decline in their mental status and gurgling, wet respirations from pooling oral secretions (aka “death rattle”), they may have hours to days to live.

      3. iii. Patients approaching the end of life display periods of apnea, or pauses in breathing—a sign that indicates a prognosis of hours (or perhaps a few days).

      4. iv. As death nears, patients develop mottling and feel cool to the touch. This is not a painful experience for the patient and indicates the patient likely has hours to live.

  2. B. Approach to the Dying Patient

    MNEMONIC: General Approach to the Dying Patient (“AIM” to be a “STAR”)

    Assess

    Inform

    Manage symptoms

    Set goals of care

    Talk to patient and family

    Arrange plans

    Reassess often

    1. a. Assess how much the patient and his or her family know about the cause of the patient’s decline and prognosis with questions like, “What do you understand about your disease?” or “What have the doctors been telling you about your disease?”

    2. b. Inform the patient and family about what you know so that they can make well-informed decisions. Do not be afraid to say sensitively that the patient “could die soon” or “is dying.”

    3. c. Manage symptoms. Evaluate and diagnose the cause of each symptom, correct the correctable, and treat using both nonpharmacologic and pharmacologic measures. Most patients at the end of life experience at least one of the symptoms below:

      1. i. Pain. There is no reason for patients to suffer pain, given the treatments currently available.

        1. 1. History. First formulate an idea of what kind of pain the patient is experiencing. To do so, take the time to obtain a thorough pain history. Remember that pain, like all symptoms, is inherently subjective; therefore, you must generally be guided by the patient’s complaints.

          MNEMONIC: Elements of Pain (“PQRST”)*

          Position: Where is the pain located?

          Palliative factors: What makes it better?

          Provocative factors: What makes it worse?

          Prescriptions: What has been tried (medication or otherwise) and was it effective?

          Quality: What does it feel like?

          Radiation: Does it travel anywhere?

          Severity: On a scale of 0 (no pain) to 10 (worst pain ever), how bad is it? How does it affect function?

          Temporal factors: When did it start? Is it constant or intermittent?

        2. 2. Examination. Inspect and palpate the site of pain, looking for associated physical signs (e.g., distention, palpable masses, erythema, atrophy, fasciculation, or weakness).

        3. 3. Diagnosis. After obtaining a history and physical examination, classify the patient’s pain into one of three categories:

          • a. Somatic pain results from activation of pain fibers in cutaneous and deep musculoskeletal tissues. Causes of somatic pain among dying patients include bone metastases, surgical incisions, and muscle cramping. Somatic pain is well localized and often described as a “sharp,” “stabbing,” or “achy” pain.

          • b. Visceral pain results from infiltration, compression, distention, or stretching of thoracic and abdominal viscera. This pain is poorly localized, colicky, and often described as “deep,” “squeezing,” or “pressure-like.” Examples include gastrointestinal (GI) obstruction, pancreatitis, urinary retention, or myocardial infarction.

          • c. Neuropathic pain results from injury to peripheral nerves, nerve roots, or the spinal cord as the result of tumor infiltration, nerve compression, radiation, surgical trauma, or chemotherapy. It is typically described as a “dull ache” with episodic “burning,” “shooting,” or “electric shocks.” Neuropathic pain can radiate distally from the site of injury.

          • d. Combination pain is a combination of any of the above. Chest pain related to myocardial infarction, for example, is a viscerosomatic type.

  3. C. Treatment of Pain

    1. a. Nonopioid analgesics. Nonopioids are the therapy of choice for mild and intermittent pain. For moderate to severe pain, nonopioids may also be used as adjuvants to opioids. All nonopioid analgesics have a ceiling effect, after which higher doses produce no improvement in pain. Nonopioids are better for treatment of somatic pain (especially bone pain, which responds reasonably well to nonsteroidal antiinflammatory drugs [NSAIDs]) than for visceral or neuropathic pain.

      1. i. Acetaminophen has limited analgesic potency and no notable antiinflammatory properties. It is relatively safe but can be hepatotoxic and occasionally nephrotoxic. Limit the total daily dose of acetaminophen to no more than 4 g for patients <65 years old and 3 g for patients ≥65 years old.

      2. ii. NSAIDs have both analgesic and antiinflammatory properties. There are several classes of NSAIDs, to which individuals respond differently. It is worth trying at least one NSAID in every class before completely abandoning NSAIDs as a treatment modality.

        1. 1. NSAID classes. Types of NSAIDs include salicylic acids (aspirin, salsalate), indoleacetic acids (indomethacin, sulindac), propionic acids (ibuprofen, ketoprofen, naproxen), pyrrole acetic acids (diclofenac, ketorolac), benzothiazines (piroxicam), alkanones (nabumetone), and cyclooxygenase-2 (COX-2) inhibitors (celecoxib, rofecoxib).

        2. 2. Side effects. Possible adverse effects include gastric irritation, nephrotoxicity, hepatotoxicity, and bleeding. NSAIDs should be avoided in persons with gastritis, gastropathy, duodenopathy, bleeding diathesis, renal insufficiency, severe hypertension, end-stage liver disease, and heart failure.

      3. iii. Anticonvulsant medications (e.g., gabapentin, pregabalin, lamotrigine, topiramate, carbamazepine, valproic acid, phenytoin). These drugs can help manage neuropathic pain described as “burning,” “electric,” or “shooting.”

      4. iv. Tricyclic antidepressants (e.g., nortriptyline, amitriptyline). These drugs can often manage neuropathic pain described as “burning” better than anticonvulsants or opioids. Patients should be monitored for anticholinergic side effects. Avoid using in older adults.

      5. v. Serotonin/norepinephrine reuptake inhibitors (SNRI) (e.g., duloxetine, venlafaxine). Like tricyclic antidepressants, these drugs can be useful adjuvants for the treatment of neuropathic pain and have less anticholinergic side effects.

      6. vi. Bisphosphonates (e.g., pamidronate, ibandronate, zoledronate) are effective for treating bone pain related to metastases from breast cancer and myeloma.

      7. vii. Local anesthetics (e.g., lidocaine patches) are effective for treating localized, superficial neuropathic and somatic pain syndromes.

    2. b. Opioids. The distinguishing features of these drugs are extreme effectiveness for treatment of moderate to severe somatic and visceral pain and absence of a ceiling effect. Opioids differ in potency, but they are all equally capable of relieving pain when appropriate dosing is used. They can be prescribed in combination with adjuvant analgesics.

      1. i. Opioid dosing (Table 3.1, Box 3.1)

      2. ii. Switching routes of administration may be necessary when the patient gains or loses the ability to swallow (Box 3.2).

      3. iii. Switching opioids may be necessary when patients have a poor response, intolerable side effects, or poor compliance (Box 3.3).

      4. iv. Side effects. Possible effects include constipation, myoclonus, urinary retention, sedation, nausea and vomiting, pruritus, and respiratory depression. Tolerance develops over time for all these effects except constipation, myoclonus, and urinary retention. Constipation can be prevented by adding a bowel regimen (see below). Myoclonus, urinary retention, delirium, and hypersensitivity reactions demand switching to a different opioid.

        Table 3.1 Usual Starting Doses and Approximate Equianalgesic Doses of Commonly Used Opioids for Opioid-Naïve Adults

        Starting Dose

        Equianalgesic Dose

        Type of Pain (Rating)

        Opioid*

        PO

        IV

        PO

        IV

        Mild (1–3)

        Codeine

        30–60 mg

        q3–4 hr

        200 mg

        120 mg

        Hydrocodone

        5–10 mg

        q4–6 hr

        30 mg

        Moderate (4–7)

        Oxycodone

        5 mg

        q3–4 hr

        20 mg

        Severe (8–10)

        Oxycodone

        10–20mg

        q3–4 hr

        20 mg

        Morphine

        15–30 mg

        q3–4 hr

        1–2mg

        q10 min

        rapid titration

        5–10mg

        q3–4 hr

        slow titration

        30 mg

        10 mg

        Methadone

        5–10 mg

        q6–8 hr

        5–10 mg

        q6–8 hr

        20 mg acute

        2–4 mg chronic

        10 mg acute

        2–4 mg chronic

        Hydromorphone

        4–8 mg

        q3–4 hr

        1–2 mg

        q3–4 hr

        7.5 mg

        1.5 mg

        Fentanyl

        100 mcg

        q1–2 hr

        45 mg/day morphine = 25 mcg/hr patch q3d

        0.1 mg

        * Meperidine has been excluded because its toxic metabolites make it an inappropriate drug for repeated dosing.

        Methadone is a very potent opioid whose metabolites accumulate with repeated dosing. Consult a pharmacist before prescribing.

        (Adapted from American Pain Society, Principles of Analgesia Use in the Treatment of Acute Pain and Cancer Pain. Fourth ed. Glenview, IL: American Pain Society; © 1999.)

        Remember: No standard opioid dose exists; thus, treatments must be individualized.

        * Does not apply to methadone since switching to methadone can be dangerous and requires pharmacy consultation.

  4. D. Treatment of Non-Pain Symptoms

    1. a. Dyspnea in terminal patients does not differ from that in nonterminal patients. As with all symptoms, first conduct a thorough history and physical examination, identify the cause, and then select the therapy accordingly (see Chapter 14).

      1. i. Diagnosis. Common causes include bronchospasm, pulmonary edema, aspiration of secretions, and anxiety.

      2. ii. Treatment should be directed at the cause, if possible.

        1. 1. Bronchodilators help bronchospasm.

        2. 2. Opioids (oral [PO] or intravenous [IV]) can be used to treat dyspnea in all patients, except those with neuromuscular disease.

        3. 3. Oxygen is appropriate for moderately hypoxemic patients (<90% saturation). For patients with mild hypoxemia (90%–94% saturation), the value of oxygen therapy is debatable.

        4. 4. Sedative-hypnotics (e.g., lorazepam, diazepam) in small doses help relieve anxiety contributing to dyspnea not responding to morphine.

        5. 5. Diuretics (e.g., furosemide) improve pulmonary edema or ascites.

        6. 6. Thoracentesis reduces dyspnea due to pulmonary effusion.

        7. 7. Paracentesis reduces intraabdominal pressure in ascites.

        8. 8. Anticholinergics such as hyoscine hydrobromide, glycopyrrolate, amitriptyline, or scopolamine patches reduce oral secretions and the “death rattle.”

        9. 9. Nonpharmacologic interventions such as having a fan blow on the face, keeping the room cool (<68° F) and pursed-lip breathing can help with mild to moderate dyspnea.

    2. b. Nausea and vomiting can be very debilitating at the end of life. However, effective control can be achieved in most patients with available treatments. First conduct a thorough history and physical examination and then identify the cause and select the therapy accordingly.

      1. i. History. Distinguish vomiting from expectoration or regurgitation.

      2. ii. Examine for signs of intestinal obstruction and fecal impaction.

      3. iii. Diagnosis. Among terminally ill patients, common causes of nausea and vomiting include increased intracranial pressure, anxiety, pain, medications (e.g., chemotherapy, selective serotonin reuptake inhibitors [SSRIs], opioids, opiates), gastritis (radiation or medication induced), mechanical obstruction or ileus, and metabolic abnormalities (e.g., hypercalcemia, hyponatremia).

      4. iv. Treatment. Correct treatable conditions, then choose a treatment from the list below. You may need to use more than one agent to achieve complete relief.

        1. 1. Metoclopramide is first-line therapy for most patients at the end of life because it reduces the sense of nausea, stimulates GI motility (improves appetite), and is inexpensive. In combination with steroids, it can be as effective as the setron drugs (see below). About 3% of patients experience extrapyramidal side effects (e.g., tremors, incoordination) with metoclopramide.

        2. 2. Setron drugs (e.g., ondansetron) act both centrally and peripherally and are especially effective at preventing and treating chemotherapy-related nausea and vomiting. They are especially useful in patients who are susceptible to the extrapyramidal side effects of other classes. This class of medication can worsen constipation.

        3. 3. Phenothiazines (e.g., prochlorperazine, chlorpromazine) possess a broad spectrum of action and are useful for most types of nausea and vomiting. Hypotension, sedation, and decreased salivary flow are their main adverse effects.

        4. 4. Anticholinergics (e.g., hyoscine, scopolamine, glycopyrrolate) help with symptoms related to secretions, motion sickness, or bowel obstruction.

        5. 5. Antihistamines (e.g., cyclizine) are effective in motion sickness, bowel obstruction, and increased intracranial pressure.

        6. 6. Steroids (e.g., dexamethasone) work well in synergy with setrons, metoclopramide, or phenothiazines. They are especially useful in patients with increased intracranial pressure and bowel obstruction.

        7. 7. Dronabinol is effective for patients with diffuse metastatic disease affecting the GI tract that is unresponsive to other antiemetics.

        8. 8. Benzodiazepines (lorazepam, diazepam) are effective for nausea caused by anxiety or for “anticipatory” nausea, or nausea that occurs in anticipation of a certain stimulus (such as a patient who becomes nauseated before administration of chemotherapy).

        9. 9. Olanzapine and haloperidol are antipsychotic drugs that can relieve nausea in some patients with advanced cancer who fail other antiemetics.

    3. c. Anxiety is an unpleasant sense of apprehension often accompanied by physical symptoms such as palpitations, chest pain, tingling, trembling, choking, abdominal pain, sweating, and dizziness. Acute anxiety is common but is usually temporary in dying patients. It is easily treated.

      1. i. History. Discuss the patient’s social situation, fears, and emotions. Identify medical factors that may contribute to anxiety such as medications (e.g., steroids, neuroleptics, SSRIs, stimulants, thyroxine), withdrawal (e.g., alcohol, antidepressants, benzodiazepines), physical symptoms (e.g., pain, dyspnea), metabolic disturbances (e.g., hypercalcemia, hypoglycemia), and psychiatric disorders (e.g., delirium, depression, posttraumatic stress condition).

      2. ii. Treatment. Correct treatable conditions: relieve pain, correct misconceptions, provide reassurance, and discontinue anxiety-inducing medications. Consider formal psychological support. Pharmacologic treatment may include:

        1. 1. Benzodiazepines (e.g., clonazepam, alprazolam, diazepam, lorazepam).

        2. 2. Antidepressants for contributing depression (e.g., SSRIs), although these can take 4–8 weeks to have an effect and thus not be useful or appropriate in patients with a short life expectancy.

        3. 3. Antipsychotics when accompanied by a thought disorder.

        4. 4. ß-blockers (e.g., propranolol) can be useful for relief of accompanying autonomic symptoms.

    4. d. Depression. Grief is an acceptable response to bad news and progressive decline, but depression is not. In contrast to grief, depression is a prolonged state of sadness associated with specific physical signs and symptoms. It is important to identify depression when it occurs because it is highly treatable (>80% of patients improve with treatment).

      1. i. History. Assess if the patient has felt depressed or “blue.” To distinguish depression from grief, ask about anhedonia, altered sleep, altered appetite, persistent suicidal ideation, fatigue, psychomotor agitation/retardation, impaired concentration, or feelings of worthlessness. Feeling depressed or “blue” with at least four of these symptoms suggests depression.

      2. ii. Treatment. Provide therapy for correctable conditions: relieve pain; discontinue depression-inducing medications (e.g., steroids, chemotherapy, phenothiazines, antihypertensives); treat hypokalemia and hypercalcemia; and rule out hypothyroidism, hypo/hyperparathyroidism, Cushing’s syndrome, and hyperprolactinemia. Schedule formal psychological support. In addition, consider using the following agents:

        1. 1. SSRIs (e.g., paroxetine, sertraline, citalopram, fluoxetine), starting at the smallest dose, titrating upward every 2 weeks. While effective, these medications take 4–8 weeks to take effect, which may be too long for many terminally ill patients.

        2. 2. Newer antidepressants are available as second- line or even first-line agents under specific circumstances. Duloxetine and venlafaxine are SNRIs and are useful for patients with comorbid musculoskeletal pain. Bupropion is useful in patients with anhedonia, fatigue, or manic depression or to counter the sexual side effects of SSRIs. Mirtazapine is useful in patients with weight loss. As with SSRIs, always consider the time frame necessary to achieve a response versus the expected life span of the patient.

        3. 3. Psychostimulants (methylphenidate) are very valuable when rapid symptom onset is necessary; these drugs are usually effective within days of initiation. They help with psychomotor retardation, poor appetite, and fatigue. They should be avoided in patients with active coronary artery disease or with severe anxiety.

    5. e. Constipation is common, especially in patients with advanced cancer or those taking opioids.

      1. i. History. Factors that may contribute to constipation include medications (opioids, anticholinergics, tricyclics, SSRIs, antacids, diuretics, anticonvulsants, statins, calcium channel blockers), neurologic disorders (nerve compression, neuropathy), age, inactivity, inability to get to the toilet, lack of privacy, change in diet, dehydration, and depression.

      2. ii. Physical examination. Check for obstruction and fecal impaction.

      3. iii. Diagnosis. Rule out hypercalcemia and hypokalemia.

      4. iv. Prevention. Prevent constipation in patients on opiates by administering an osmotic agent (polyethylene glycol or lactulose) plus a motility agent (bisacodyl or senna) daily. Titrate the dose every 2–3 days for a bowel movement at least once every 48 hours. Avoid constipating agents (e.g., fiber, anticholinergics, calcium channel blockers, iron, anticonvulsants).

      5. v. Treatment. For patients who have not had a bowel movement in at least 3 days and are not impacted, try lactulose orally or glycerin/bisacodyl rectally. Use enemas or polyethylene glycol (1 L PO/nasogastric [NG] once) in refractory cases. If impacted, enemas and manual evacuation are needed. For refractory cases of opioid-induced constipation (OIC), methylnaltrexone can be used subcutaneously to reverse the effect of narcotics on peripheral opioid receptors responsible for OIC. Because methylnaltrexone does not cross the blood-brain barrier, this medication will not reverse the analgesic effects of narcotics.

    6. f. Fatigue is the most common symptom at the end of life and is often multifactorial (e.g., disease burden, medications). Often overlooked, this symptom can be quite debilitating and distressing to patients and thus warrants careful attention.

      1. i. Diagnosis. Identify treatable causes such as hypothyroidism, anemia, depression, anxiety, pain, infection, medications (e.g., chemotherapy, antihypertensives), insomnia, and hypoxemia.

      2. ii. Treatment

        1. 1. Corticosteroids (dexamethasone) can improve mood, energy, and appetite temporarily. Long-term sequelae are not of concern for patients with a prognosis less than several months. Prevent thrush with nystatin. Short-term side effects include GI distress and steroid-induced psychosis (rare).

        2. 2. Psychostimulants (methylphenidate) can improve mood, energy, and appetite rapidly, but the effect of these drugs is variable. Psychostimulants are contraindicated in patients with agitation, psychosis, or active coronary artery disease.

  5. E. Communication with Family

    1. a. Set Goals of care/Talk to the Family. One of the most important aspects of care at the end of life is effective communication with patients and families regarding goals of care and guiding them through medical decisions (e.g., code status). Medical providers should feel comfortable leading these conversations. When needed, palliative care may be consulted to assist in more complex discussions. A stepwise approach to goals of care discussions can be accomplished using the SSPIKESS process:

      • MNEMONIC: Goals of Care Discussion (“SSPIKESS”)

        1. i. Setup the situation: Before the meeting, review the diagnosis, prognosis, and options for treatment with members of the care team. If there is no consensus among care providers, hold a team meeting first to attain agreement regarding recommendations for care. Review any psychosocial facts that may affect communication (cultural background, religion, family dynamics). Find a place and a time to meet.

        2. ii. Start: At the start of the meeting, have everyone (including family members and medical providers) introduce themselves with their name and their relation to the patient. State the purpose of the meeting and review any specific decisions that need to be made (“Today we want to provide you with an update on your medical condition, and we want to talk about how to best continue your care”).

        3. iii. Perception: Establish a shared understanding of the disease by first eliciting how much the patient and family understand about their illness (“I know you’ve been getting a lot of information during this hospitalization; please tell us in your own words what you’re hearing the doctors say about your disease” or “What do you understand about your illness?”). Allow family members to give their impression in their words without interruptions as much as possible.

        4. iv. Information: Assess how the patient/family would like to receive information (“Would you like me to give you all the information or sketch out the results and spend more time discussing the treatment plan?”).

        5. v. Knowledge: Once the patient/family has given their understanding of the disease, provide any medical update that is needed. Remember to keep information simple and to the point. Check frequently for comprehension and encourage questions (“I know this is a lot to take in; do you have any questions about what’s been said so far?”).

        6. vi. Explore hopes and fears for the future: Based on the shared understanding of the disease, explore the hopes and fears a patient/family has for the future (“Given, then, that you have a life-limiting illness, when you think about your future what are you hoping for? When you think of your future, what worries you?”). Validate hope, but also encourage preparation for expected outcomes (e.g., physical decline, death).

        7. vii. Specific decisions: Based on the hopes and fears expressed by the patient/family, make recommendations for how to best continue care (“You said you don’t want to prolong the inevitable. Given that, I recommend we initiate a ‘Do Not Attempt Resuscitation’ order” or, “You said you want to spend what time you have left at home with your family. Based on that, I think it’s best to talk about hospice care and what it has to offer”).

        8. viii. Summarize: At the end of the meeting, review any decisions made and name any disagreements that may persist. If necessary, set a time to meet again. Thank the patient and family for their time.

    2. b. Arrange plans based on the goals set by the patient and family. Additional elements to address can include the following:

      1. i. Living will: Gives the patient the opportunity to present his or her preferences regarding life-sustaining treatment. It takes effect only if/when the patient loses decision-making capacity and can be revoked by the patient at any time, either in writing or verbally. A living will is not equivalent to a Last Will and Testament.

      2. ii. Durable power of attorney for health care (DPAHC): Allows a patient to appoint a proxy (or proxies) to decide on his or her behalf; it takes effect only when the patient loses decision-making capacity. In most states, the authority of the durable power of attorney for health care supersedes a living will. Many patients confuse the durable power of attorney for health care with the executor of their will or their financial power of attorney, but they are not necessarily the same.

      3. iii. Do not attempt resuscitation (DNR or DNAR) orders: Physicians’ orders to staff not to attempt cardiopulmonary resuscitation (CPR) or intubation in the event of cardiopulmonary arrest. They are the only way to prevent CPR; a living will is not sufficient to prevent CPR in the hospital.

        1. 1. It is the physician’s responsibility to write a DNAR order as soon as the patient or the DPAHC refuses CPR or the physician believes that CPR would be futile or nonbeneficial.1

        2. 2. The issue of DNAR can be raised by asking, “If you die despite of our best efforts, do you want us to use heroic measures to attempt to bring you back?” Document the contents of your discussion and encourage the patient to complete a living will or appoint a DPAHC if he or she has not done so already. Even if the patient refuses to sign a living will, however, this plan is valid as long as you document the discussion in the medical record. A physician may even ask a patient to sign a statement that they both agree reflects their discussion.

      4. iv. Hospice is a multidisciplinary service that supports the patient and family through dying and bereavement. Its mission is to relieve physical, emotional, social, and spiritual suffering associated with a natural dying process. Hospice can provide care at home, hospice facilities, or nursing homes. Hospice limits their care to patients with a life expectancy of 6 months or less who have made a decision to forego aggressive care, to focus on comfort, and to allow a natural death to occur.

      5. v. Palliative care, like hospice, is a multidisciplinary service that seeks to relieve physical, emotional, social, and spiritual suffering. Unlike hospice, however, palliative care is for all patients, regardless of diagnosis or life expectancy, and is typically offered in hospitals or hospital-affiliated clinics. Palliative care is appropriate for patients who are chronically or terminally ill, to bridge the gap between curative therapy and hospice care. In the hospital and in outpatient settings, the palliative care team can assist with complex symptoms related to a serious or life-threatening disease; complex communication around goals of care; and end of life care.

      6. vi. “Comfort care” is a term often used to describe care focusing on comfort rather than cure in the setting of a terminal illness. This term is commonly applied when a patient is expected to die in the hospital and is similar to a hospice-like plan of care. When patients and families choose to pursue “comfort care only,” it is appropriate to discontinue all medications and treatments that do not directly relieve symptoms (e.g., taking of vital signs; administration of antihypertensives, hypoglycemics, hormone replacement therapy, and anticoagulants).

        Hot Key

        Remember that “comfort care” does not mean “no care.”

      7. vii. Life support. Any therapy used to sustain life is considered life support, including, but not limited to, artificial nutrition and hydration, mechanical ventilation, dialysis, and implantable cardiac devices. According to the US Supreme Court, competent patients and their proxies have the right to refuse or stop life support (even after it has been initiated). If a family decides to withdraw life support, make sure the family members understand that there are several potential outcomes: rapid death within minutes (e.g., patients who have vasopressors withdrawn); death within hours to days; or continued cardiopulmonary function. Assure the family that the patient’s comfort is paramount and that while we may withdraw a treatment, we never stop providing care to a patient.

        Hot Key

        Assure family that the patient’s comfort is paramount and that while we may withdraw a treatment, we never stop providing care to a patient.

    3. c. Reassess often. As illness advances, patients experience varying physical and psychological symptoms and, as a result, may change their priorities, goals, and plans. For this reason, it is important to reassess and re-inform often; the frequency of communication should be determined by the speed of decline.

  6. F. After Death

    1. a. Pronouncement. A licensed physician is responsible for pronouncing death and comforting the family. If you are called to “pronounce” someone, first talk to nursing staff and read the medical record to familiarize yourself with the patient’s history. Confirm that the attending of record has been notified. When you enter the patient’s room, introduce yourself to the family, offer condolences, and explain why you are there. Give family members the opportunity to ask questions and stay, if they wish, while you examine their loved one. Then do the following:

      1. i. Identify the patient by the hospital identification tag.

      2. ii. Ascertain that the patient is nonresponsive to verbal or tactile stimuli (a sternal rub is sufficient).

      3. iii. Confirm absence of heart sounds and pulse.

      4. iv. Look and listen for spontaneous respirations for at least 1 minute.

      5. v. Confirm that pupils are “fixed and dilated.”

      6. vi. Record your findings and the time of your assessment as the time of death. Document who was notified of the patient’s death.

    2. b. Responding to grief. Grief is a normal response to loss or impending loss. Encourage open discussion, acknowledge feelings, and offer reassurance that grief is normal. Follow up with written condolences, a telephone call, and an appointment, as appropriate. Warn the grieving family that vivid dreams and tearful memories of the departed loved one may persist for several months and that a loss of interest in outside activities will likely persist for 3–6 months. Offer a referral to grief counseling for ongoing support.

Suggested Further Readings

American Pain Society. Principles of analgesic use in the treatment of acute pain and cancer pain: American Pain Society; 1999.Find this resource:

Bernacki RE, Block SD. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med 2014;174:1994–2003.Find this resource:

Clary PL, Lawson P. Pharmacologic pearls for end of life care. Am Fam Physician 2009;79:1059–65.Find this resource:

Cleary JF. The pharmacologic management of cancer pain. J Palliat Med 2007;10:1369–94.Find this resource:

Ferrell B, Connor SR, Cordes A, et al. The national agenda for quality palliative care: the National Consensus Project and the National Quality Forum. J Pain Symptom Manage 2007;33:737–44.Find this resource:

Pantilat SZ. Communicating with seriously ill patients: better words to say. JAMA 2009;301:1279–81.Find this resource:

Twycross R, Wilcock A. Symptom management in advanced cancer. Third ed. London: Radcliffe Publishing; 2001.Find this resource:

Notes:

1 Hospitals differ regarding their futility policies; thus, it is important to know your institution’s futility policy.