Abeloff's Clinical Oncology, 4th Edition

Part II – Problems Common to Cancer and its Therapy

Section A – Symptom Management and Palliative Care

Chapter 44 – Caring for Patients at the End of Life

Janet L. Abrahm




Physicians must be clear about prognosis, not overly optimistic.



Patient decisions about resuscitation and entry into phase I trials should be predicated on receiving accurate prognostic estimates.



A sense of purpose can be maintained by patients who work on completing legacies, reconciliation, saying goodbye, and making plans for support or care of bereaved survivors.




Physical comfort is a prerequisite for exploring other sources of distress; consultation with anesthesia pain or palliative care specialists can be useful.



Depression can be ameliorated even in the last weeks of life; delirium can be mistaken for pain and may be exacerbated if treated with increases in opioid medication alone.



Problematic relationships can create open wounds as painful as any physical injury.



Families with young children are in special need of counseling and support.



Ongoing losses (in physical attractiveness or physical or mental function or of roles in family, community, or workplace) contribute to spiritual and existential distress. Life reviews and reconnection with sources of spiritual support, including religious rituals, can help.

Hospice Care



Hospice is the gold standard of care at the end of life. Hospice teams are multidisciplinary (M.D., R.N., social worker, chaplain, volunteers), but the referring physician remains in charge of the plan of care. Hospice programs provide care in the home, including all medications and durable medical equipment related to the terminal diagnosis. Patients need not have signed a “Do Not Resuscitate” order to enroll.



Barriers to hospice referral include physician and patient reluctance to accept a terminal prognosis (i.e., less than 6 months); current inadequate reimbursement for palliative therapies; and physician, family, and patient misconceptions about entry criteria and services provided.

Grief and Bereavement



The intensity of a survivor's grief depends on the characteristics of the mourner, the nature of the death, and societal and cultural factors.



Skillfully communicating the diagnosis and terminal prognosis; providing emotional, psychological, and spiritual support and physical comfort; helping families to resolve outstanding issues; and making the death as peaceful as possible are all measures that diminish the suffering of the survivors.



Survivors appreciate ongoing communication with the patient's physician. The formal bereavement program that hospice programs offer takes place during the first year after the patient's death. The program includes descriptions of typical manifestations of grieving and offers of counseling, support groups, and services of remembrance.


When cure or even prolongation of life is no longer possible, oncologists have one last task remaining: to provide expert care to patients at the end of life and support for their families.[1] Despite physical comfort, patients can experience profound suffering from any of the following causes:



Difficulty in maintaining personal dignity



Losses of significant aspects of who they were at home, in the community, or in the workplace



Lack of closure in important relationships



Feelings of spiritual alienation



Inability to discern the meaning in their lives[2]

When those problems are addressed, patients have the chance to attain transcendence, a sense that who and what they have been will persist long after they have died. [3] [4] Through collaborations with psychiatry, nursing, social work, and chaplaincy, oncology clinicians can promote physical comfort, social functioning, and psychological and spiritual well-being. [5] [6] We need never say, “There is nothing more I can do.”

Patients rely on us to help them achieve a comfortable death that follows a time when goodbyes have been said, legacies have been established, and relationships have been brought to an acceptable closure. Their families need us to minimize the patient's suffering, obtain expert palliative care consultation when needed, and communicate clearly and often with them. Currently, however, such care is the exception rather than the rule. [7] [8] This chapter provides an outline for oncology clinicians who wish to provide excellent care at the end of life and includes discussions of communication with patients and their families, approaches to ameliorating distress at the end of life, hospice care issues, manifestations of grief and bereavement, and suggestions for supporting bereaved survivors.


Timely, truthful, compassionate communication among patients who are dying, their families, and their physicians is needed to dispel fears (e.g., of unrelieved pain or of abandonment), to promote feelings of autonomy and control, to set goals of care, and to enable patients and families to be prepared for what is to come. The vast majority of patients (80% to 98%) want to be able to do the following:



Name a proxy to make health care decisions



Know what to expect as their physical condition deteriorates



Put their financial affairs in order



Know that the doctor is comfortable talking about death and dying



Feel that the family and they themselves are prepared for their death



Have funeral arrangements in place



Have treatment preferences, especially about resuscitation, in writing[9]

Families want to be able to say goodbye and be present when the death occurs, talk about their fears, and talk about the death with the clinicians.[10] Bereaved survivors are more likely to have a major depressive disorder if they feel that they have not been prepared for the death.[11] For patients and survivors to be prepared, physicians must be clear about prognosis.

The cultural norms of medicine, however, favor optimism over accuracy in delivering prognosis.[12] Physicians might assume that patients will ask when they are ready for the information. There are no data, however, on how often patients with advanced refractory disease ask about their prognosis. Moreover, patients are known to be reticent about raising other important topics—such as uncontrolled pain or their wishes regarding resuscitation—with their physicians. [13] [14] Physicians might also worry that giving a truthful prognosis will eliminate hope.

Through a truthful prognosis, however, patients with far-advanced disease can be helped to reframe what it is they are hoping for in the time that remains. Most patients hope for time to say goodbye and to bring closure to their lives. Even patients with far-advanced disease want to work on their legacies. Some dictate letters to be opened at significant events (e.g., graduations, weddings); others might want to narrate a scrapbook. Most want time at least for a personal, private review of who they were, what they did, and the difference they made.

Further, patients need to decide whether it still makes sense for them to be resuscitated. The likelihood of bad functional or cognitive outcomes affects their decisions, as does their understanding of their prognosis.[15] It is important, therefore, to tell a patient who has widely metastatic cancer that resuscitation has very limited efficacy. [16] [17] [18] [19] We also need to tell their caregivers, because they, too, are usually unaware that the patient is incurable or that the patient would benefit from hospice care until they hear it directly from their physician.[20] It is equally important to correct mistaken impressions of patients who really have only weeks or months to live. Patients who think that they have a greater than 10% chance of surviving 6 months, for example, usually want to be resuscitated. Only patients who think that they have a less than 10% chance of surviving for 6 months overwhelmingly choose comfort care and do not want to be resuscitated.[21]

Conversations about life-support preferences and those in which news of relapse or progression must be delivered take a significant emotional toll on the clinicians who conduct them, especially those in busy practices in which many such talks are needed each week. Using straightforward communication strategies such as the S-P-I-K-E-S protocol can enhance the effectiveness of the communication both for the clinician and the patient and family who are receiving the bad news.[22]

Communication with dying patients must also be culturally effective and extend to include psychosocial and spiritual needs, addressing loss, dignity, and the need for meaning. [4] [5] [23] [24] Clinicians who are not experienced in such conversations might find it helpful to use the questions crafted by experts in this field ( Table 44-1 ). [5] [23] [24] [25]

Table 44-1   -- Dignity Psychotherapy Question Protocol



Can you tell me a little about your life history, particularly those parts that you either remember most or think are the most important?



When did you feel most alive?



Are there specific things that you would want your family to know about you, and are there particular things you would want them to remember?



What are the most important roles (e.g., family, vocational, community service) you have played in life?



Why are they so important to you, and what do you think you accomplished in those roles?



What are your most important accomplishments, and what do you feel most proud of?



Are there particular things that you feel still need to be said to your loved ones, or things that you would want to take the time to say once again?



What are your hopes and dreams for your loved ones?



What have you learned about life that you would want to pass along to others?



What advice or words of guidance would you wish to pass along to your __________ (son, daughter, husband, wife, parents, other[s])?



Are there words, or perhaps even instructions, you would like to offer your family to provide them with comfort or solace?



In creating this permanent record, are there other things that you would like included?

Chochinov HM: Dignity-conserving care—A new model for palliative care: Helping the patient feel valued. JAMA 2002;287:2253.





Dying patients might experience problems of a physical, psychological, social, or spiritual nature. These patients define quality of life at the end of life as including physical comfort, a sense of control and dignity, relieving burden on their loved ones, strengthening and completing relationships with significant others, and avoiding prolongation of the dying process.[26] To provide high-quality care, therefore, oncologists need to collaborate with an interdisciplinary team such as that provided by palliative care and hospice programs. In 2006, the specialty of Hospice and Palliative Medicine was recognized by the American Board of Medical Specialties, and ACGME-approved training started in 2007. Physicians and nurses trained as palliative care practitioners address all dimensions of distress, including communication, decision making, management of complications of treatment and the disease, symptom control, psychosocial care of patients and their families, and care of the dying.[27]

Physical Causes

In the last days to weeks before death, a significant percentage of people exhibit or experience one or more of the following:



Fatigue or pain (70%)



Restlessness/agitation/delirium or noisy or moist breathing (60%)



Urinary incontinence or retention (50%)



Dyspnea (20%)



Nausea and vomiting (10%)[28]

Most of the physical problems that dying patients experience can be controlled by using a limited number of medications given by the rectal, transdermal, or, if necessary, parenteral route ( Table 44-2 ).

Table 44-2   -- Treatment of Common Physical Problems in the Last Days of Life



Routes, Doses

Pain (continuous)

Morphine, hydromorphone

IV/SC infusion





Morphine, oxycodone

SL oral concentrates

Pain (intermittent)

Morphine, oxycodone

SL oral concentrates



Buccal lozenge

“Death rattle”


Transderm Scop patch 1–3 every 3 days



0.125–0.25 mg SL 3–4 times daily



0.1–0.2 mg IV 3–4 times daily



0.5–2 mg SL; every 2 hours



0.5–2 mg twice daily PO



2.5–5 mg PO every morning or every morning and noon

Delirium (mild)


1–5 mg PO, PR or 0.5–3 mg SC, IV, every 2–12 hours



12.5–50 mg PO, IV, PR every 4–8 hours



2.5–5 mg PO or SL every hour or bid

Agitated delirium/or palliative sedation for refractory symptoms


0.4 mg–1 mg load; 0.4–1 mg/hr IV initial dose



Rebolus and titrate as needed to target symptom/sign relief



1–3 mg/kg IV load; 1–3 mg/kg/hr IV drip



120–200 mg PR every 4 hours



0.5–1 mg/hr IV



2.5–5 μ g/kg/min IV

Dyspnea (anxiety)


1 mg SL, PO every 2 hours

Dyspnea (other)


5–10 mg PO/PR every 2 hours; 1–3 mg IV every hour



25–50 mg PO, IV, PR every 4–12 hours


Lorazepam/metoclopramide or haloperidol

Compounded suppositories with desired agents (depending on presumed cause of nausea) every 6 hours PR

Data from Abrahm JL: A Physician's Guide to Pain and Symptom Management in Cancer Patients, 2nd ed. Baltimore, Johns Hopkins University Press, 2005 p. 408; and Cowan JD, Palmer TW: Practical guide to palliative sedation. Curr Oncol Rep 2002;4:242–249.

IV, intravenous; PO, oral; PR, per rectum; SC, subcutaneous; SL, sublingual.





Pain Control

If oncologists use World Health Organization guidelines for cancer pain relief, 50% of their patients near death will experience no pain, 25% will experience mild to moderate pain, and only 3% will experience severe pain.[29] Patients require close monitoring, and both opioids and nonopioid adjuvants are usually required. For patients who are unable to take pills, buccal, sublingual, transmucosal, or rectal opioids are usually effective. [30] [31] [32] There are no data on the absorption of transdermal opioids newly placed in patients near the end of life. Concentrated morphine or oxycodone oral solutions (20 to 40 mg/mL) can be given hourly or every 2 hours and are often satisfactory. Rectal administration of sustained-release opioid preparations are not FDA approved, but studies indicate that morphine absorption from a sustained-release preparation placed in the rectal vault is equivalent to that from oral administration,[33] while absorption from a sustained-release oxycodone preparation is increased by∼30%.[34] If pain is a new problem and the patient is opioid-naive, institute therapy with 15 to 30 mg sustained-release morphine every 12 hours.

Adjuvants can also be given rectally or subcutaneously.[31] Patients who have previously benefited from oral nonsteroidal anti-inflammatory drugs (NSAIDs) can receive rectal indomethacin; patients on a stable glucocorticoid dose for bone or nerve pain can receive subcutaneous dexamethasone or specially prepared dexamethasone suppositories. Rectal doxepin can replace oral tricyclic antidepressants.

Pain control must be maintained as death approaches. If the calculated opioid dose is too large to be delivered by sublingual, transdermal, or rectal routes, if pain relief does not seem to be satisfactory using any of these routes, or if the routes are unacceptable to the patient or the caregiver, use a subcutaneous or intravenous opioid infusion.

Although pain relief is the goal in dying patients, the family is sometimes concerned that the opioid is “killing” the patient. If the patient's respiratory rate declines, the family might mistakenly think that the patient is oversedated. Unlike patients who are in less advanced stages of their illness, the normal respiratory rate in terminal patients is about six to twelve breaths a minute. If the rate falls to fewer than six breaths per minute, reducing the dose of the opioid by 25% is usually effective; naloxone is almost never indicated in such situations.

Death Rattle

Pooling of secretions in the hypopharynx of dying patients causes the loud rasping sounds referred to as the “death rattle.” Patients are usually unaware of these loud respirations, but they can be very distressing for families. Reposition the patient to a lateral recumbent position and, if needed, add hycosamine (0.125 mg three or four times daily sublingual [Levsin SL]), glycopyrrolate (subcutaneously 0.2 mg every 4 to 8 hours or 0.6 to 1.2 mg per day by subcutaneous or intravenous infusion), or scopolamine in a transdermal patch.[35]


The prevalence of cancer-related dyspnea in dying patients is approximately 70%.[36] These patients benefit from the same symptomatic therapies that are recommended for patients with less advanced disease. Any opioid that is being used for pain control can also be used to ameliorate the patient's dyspnea. Aggressive treatment of panic due to perceived breathlessness includes an oral or parenteral opioid (e.g., morphine 5 to 10 mg orally), rectal or parenteral chlorpromazine, or parenteral midazolam for refractory panic.


Although patients are unlikely to be thirsty or hungry, they might have dry mouths caused by opioids.[37] Rehydration is not indicated to relieve this symptom because there is no difference in the reports of thirst or dry mouth between dehydrated and normally hydrated dying patients, and no controlled studies have shown that rehydration is effective.[38] Providing parenteral hydration increases distress, causing nausea and vomiting from increased gastric secretions; dyspnea from ascites, upper airway secretions, and pulmonary edema; and pain from ascites and peripheral edema.[37] Moistening the mouth with swabs or offering sips of water, ice chips, or fruit-flavored ice usually ameliorates the xerostomia.


Massive hemoptysis, hematemesis, hematochezia, or exsanguination from a tumor eroding into a major vessel is rare but can be horrifying for professional caregivers, family members, or friends to observe. If the patient is likely to develop such a complication, ensure that there are dark-colored sheets, towels, and blankets available to mask the blood. Consider insertion of a peripherally inserted central catheter line in patients who have no indwelling venous access device to ensure emergency intravenous access for patient sedation. Appropriate medications should be on hand, either on the hospital unit or in the home. If the patient is enrolled in a hospice program, the nurse can provide instruction for administering prefilled syringes of morphine, to be given intravenously when possible, or a benzodiazepine. Midazolam (Versed) can be given intramuscularly or intravenously; diazepam or lorazepam (e.g., Ativan) can be given rectally. When the event occurs, the patient is placed bleeding side down, in the Trendelenburg position if possible, and given midazolam for anxiety and opioids if there is dyspnea or pain.

Psychological Causes

According to Dr. Susan Block, “grief, sadness, despair, fear, anxiety, loss and loneliness are present, at times, for nearly all patients facing the end of their lives.”[39] They need “good communication and trust among patient, family, and clinical team, the ability to share fears and concerns, as well as meticulous attention to physical comfort and psychological and spiritual concerns.”[39] The elements of a thorough discussion of the patient assessment (which includes “developmental issues; meaning and impact of illness; coping style; impact on sense of self; relationships; stressors; spiritual resources; economic circumstances; physician-patient relationship” can be found in Dr. Block's review.[39]


Anxiety in dying patients can arise from physical or psychological disorders.[40] Sepsis, hypoxia, metabolic abnormalities, withdrawal from opioids, selective serotonin reuptake inhibitors (SSRIs), or benzodiazepines, drug reactions (e.g., akathisia from metoclopramide or paradoxical agitation from benzodiazepines), and uncontrolled pain all can present as anxiety. Patients with panic disorders, agitated depression, phobias, or adjustment disorders also can present with anxiety.

Nonspecific pharmacologic treatments usually include benzodiazepines (e.g., the short-acting lorazepam, 0.5 to 2 mg every 2 hours as needed, or long-acting clonazepam, 0.5 to 2 mg orally twice daily), SSRIs, and, when there is evidence of delirium, neuroleptics (e.g., haloperidol, 1 to 5 mg orally or 0.5 to 3 mg intravenously every 2 to 12 hours, or olanzapine, 2.5 to 5.0 mg at bedtime or twice daily). Opioids with or without benzodiazepines are useful for patients whose anxiety is due to dyspnea.[41] Nonpharmacologic treatments, such as relaxation training, hypnosis, supportive psychotherapy, and counseling, are also very effective.[40]


Terminally ill patients who answer, “Yes,” to the screening question “Are you depressed?” are likely to be diagnosed as depressed in a more comprehensive evaluation.[42] To explore the subject further, clinicians can try to determine whether the patient exhibits hopelessness, a sensation of helplessness, or guilt or reports being a burden to caregivers. Clinicians can ask, “How do you see your future? What do you imagine is ahead for yourself with this illness? What aspects of your life do you feel most proud of? Most troubled by?”[43] The clinician can serve as a therapeutic agent by listening actively and by providing support for both the patient and the family. For depressed patients who have only a few weeks to live but can still take oral medications, methylphenidate (2.5 to 5 mg orally at 8:00 a.m. and noon, initial dosing) can provide rapid symptomatic improvement.[44] For those with 4 weeks or more to live, an SSRI should also be included.


Delirium (hypoactive, hyperactive, or mixed) has been reported in up to 88% of dying patients.[45] Hypoactive delirium can be confused with depression, and agitated delirium can be confused with uncontrolled pain, especially in dying patients. [46] [47] Patients with hypoactive delirium might appear withdrawn, paranoid (e.g., fearing that the caregiver is trying to poison them with medications), or sad, and careful mental status testing with tools such as the Folstein Mini-mental or “draw a clock with the hands indicating a time of 10 minutes to 2” might demonstrate significant cognitive impairment. Patients with agitated delirium may cry out, be restless, and pick at clothes or bedsheets. Patients with any type of delirium can experience insomnia and daytime somnolence, nightmares, agitation, irritability, distractibility, hypersensitivity to light and sound, anxiety, difficulty in concentrating or marshaling thoughts, fleeting illusions, hallucinations and delusions, emotional lability, attention deficits, and memory disturbances.[48] It is therefore important to treat the delirium even among patients without overt agitation.

The etiology of delirium among patients with advanced cancer is often multifactorial.[45] Medical causes include metabolic abnormalities (hypercalcemia, hyperglycemia, and uremia), malnutrition, dehydration, hypoxia, fever, infection, bladder outlet obstruction, obstipation, uncontrolled pain, hepatic failure, primary brain tumor, and brain metastases. Medications—especially opioids, benzodiazepines, NSAIDs, and high-dose corticosteroids—often contribute to delirium. Substitution of another opioid might help to reverse the delirium.[49] A comprehensive psychiatric evaluation (which can be done at home by appropriately trained clinicians) can differentiate delirium from anxiety, minor depression, anger, dementia, and psychosis.[48] Among patients who are very near the end of life, the burden of the evaluation might exceed the benefit of finding a specific, reversible cause. Empiric therapy that controls the delirium might suffice. Discussion with the patient's health care proxy can help to clarify the best course of action. Treatment protocols for delirium are included in Table 44-2 .


Almost half of the patients who are actively dying of cancer show signs of restlessness and agitation. They might toss and turn, moan, have muscle twitching or spasm, and be awake only intermittently. Some are suffering from unresolved spiritual or social problems. The approach to assessment and treatment of agitated dying patients involves, sequentially, nonpharmacologic symptomatic therapy, an evaluation for reversible causes and treating those that are found, and empiric symptom management ( Fig. 44-1 ). Whenever a treatment resolves the agitation, it should be continued, and the patient should be reassessed. In rare cases, patients with agitation require sedation. The aggressiveness of the evaluation and the nature of the treatments that are given should be guided by the patient's goals and the burdens and benefits of each intervention. The site of care (hospital, nursing home, home) need not be the deciding factor in the decision about which palliative assessment and therapies to offer.


Figure 44-1  Treatment of agitation in the last days. *Guided by patient/family wishes, burden/benefit.



Many patients’ agitation responds to nonspecific, nonpharmacologic measures, such as adjusting the lighting, decreasing extraneous noise in the room, playing favorite music, gently touching the patient, or having family and friends read to, pray with, or quietly talk with the patient. A visit from one of the hospital chaplains can be comforting. A visit from an estranged family member or friend, reassurance that loved ones are well cared for and are prepared for the patient's departure, and family permission to “let go” can have significant impact.

If these measures are not effective, the family and caregivers should weigh the burdens and benefits of searching for reversible causes. Those such as a full bladder, a fecal impaction, poorly cleared secretions, pain, or side effects from opioids or other medications are usually easy to detect and correct. Metabolic disturbances leading to delirium and pulmonary processes causing hypoxia or anxiety could require invasive maneuvers that do not seem appropriate. When a specific cause is found, decisions can be made regarding the burden and benefits of specific versus symptomatic treatment. The patient's condition and goals, for example, dictate whether a patient who has dyspnea from a large pleural effusion should undergo a thoracentesis or simply receive opioids. If correction of one specific cause does not resolve the agitation, resume the search, as appropriate, for another one.

If no specific cause is detected or if the search for specific causes is felt to be inappropriate, empiric therapies based on the likeliest process(es) causing the distress should be tried. Empiric treatment for delirium, pain, hypoxia, and anxiety often relieves the agitation. If the agitation persists, sedation will be required (see Table 44-2 ).

Social Causes

Family concerns can weigh heavily on dying patients. Practical concerns are often the easiest to resolve, although a major concern of dying patients is the burden they feel they are imposing on their lovedones.[26] They also want to strengthen and complete their relationships. For this reason, problematic relationships can create open wounds that are as painful as those from any physical injury. Dr. Ira Byock offers five simple phrases (“The Five Things”) that encompass the subjects people can benefit from discussing with those they love: “Forgive me; I forgive you; thank you; I love you; and goodbye.”[3]Many patients and families find it difficult to say these phrases or discuss these subjects. Social workers, chaplains, psychologists, and psychiatrists can be of great help in facilitating these conversations and bringing peace to a dying patient and to the soon-to-be-bereaved family members.

Families of dying patients face an extraordinary number of challenges. They must cope with their own losses, organize and pay for home care, and care for the family members who are not ill. They are best helped by the following measures:



Patient comfort



Communication with health care providers



Help with caregiving and meeting financial and social costs



Maintaining stability



Adapting to change



Support for their grief and upcoming bereavement [50] [51] [52]

Oncology clinicians can help by simplifying medication regimens and planning for emergencies that can be foreseen.[53] See also Box 44-1 for suggestions about how oncologists can address some of the family's needs. Social workers collaborate with the patient's primary oncology team to provide most of the support, explain the benefits of hospice and other needed services, and arrange family access to them.

Box 44-1 


During the last weeks to months of the patient's life, office visits become impractical. Regular contact by telephone, supplemented, when possible, by one or more home visits, retains the connection that patients and families need with their primary treatment team. Clinicians also can promote continuity and minimize feelings of abandonment by collaborating with the home care or hospice nurses and, as requested, with the social workers who are part of the home care team. Praising the family caregivers for the work they are doing, helping them to anticipate upcoming problems and make contingency plans, and checking in with them at regular intervals promote timely identification and, when possible, resolution of new problems.

Many family members and medical trainees have never seen anyone die an expected death outside an intensive care unit. The clinician who is familiar with the dying process can be a crucial source of information and comfort. For inpatients, the clinician works with the nursing team that is caring for the patient and also serves as an attentive observer striving to provide maximum comfort. I make at least two visits a day to stable patients to monitor their comfort through reports from nursing and family, to answer questions, and to educate professional and family caregivers as to what they should expect in the last days.

Patients who were formerly alert and communicative usually become less so. They are apparently still comforted by the touch and voices of those they love and might even emerge from what seemed to be an insensible state to greet a welcome newcomer. I tell families that to me, it is as though the patient lives in a house with many rooms, a mansion. As they come closer to dying, the patient moves farther and farther back in the house, and it is more and more effort for them to greet callers at the front of the house. But the callers are still welcome, as are their voices and conversation. I ask families to let patients know they have arrived and then to add that patients should not feel obliged to speak to them. Patients can also be asked to provide a hand squeeze or other sign of recognition. With close family, I discuss the “Five Things” (see the section of the chapter entitled “Social Causes”) and suggest that they find the time to share with the patient any of those sentiments they feel would be appropriate.

I reassure families that we know that dying patients are rarely hungry or thirsty and that moistening the mouth is all that is needed. If necessary, I review the burdens of hydration (see the section entitled, “Xerostomia”). I also explain about Cheyne-Stokes breathing and that it does not indicate that the patient is gasping for breath. I also ask them to feel free to let us know if the patient seems uncomfortable or develops noisy breathing, as we want to address any source of discomfort as rapidly as possible. I offer the services of chaplaincy, and I am alert to whether a social worker would be helpful, if chaplains and social workers are not already involved. Many family members do not know that this kind of help is available to them in the hospital.

If the family has not done so already, I urge them to choose a funeral home and make all the necessary arrangements before the patient has actually died, to free themselves of that task when the death occurs. Families often ask how they will know that the patient is dying. I ask them to look for a marked decrease in urine output (in a foley bag or diapers), cooling of the arms and legs, and new pallor or mottling of the skin. Some patients develop fecal incontinence as they die, so if hospice is not involved and the patient is at home, I alert the family to this possibility.

Supporting the Ward Personnel and the House Staff

To decrease potential feelings of guilt and anxiety, I review with all team members the history of the illness, the limits of the treatments that remain, the burdens of those treatments, and, when appropriate, the limits the patient has placed on further supportive measures. I also remind them that despite our best efforts, patients still die and that it is no one's fault. I also suggest things they can do that will enhance the patient's last days and that will further the healing process of the survivors.

During the hospitalizations that lead to death and after the death itself, I try to dispel any misconceptions they have about their “fault” for the death and to praise the work they did to make the dying as comfortable as possible. This kind of support goes a long way toward enabling young physicians and ward staff to recover from the pain they experience when a patient dies and to allow themselves to feel a sense of satisfaction for a job well done.

Families with young children are in special need of counseling and support. Guidelines for clinicians who work with these parents and their children include six steps (which are described in detail in the reference provided):



Learn about the children.



Maximize the child's support system.



Facilitate honest communication about the illness.



Address common questions.



Prepare for hospital visits.



Say goodbye.[54]

Cultural Considerations

To avoid communication difficulties, physicians and nurses should explore with patients and families what they feel are appropriate context and structure of end-of-life discussions ( Box 44-2 ).[55] Non-Hispanic whites and African Americans, for example, differ in many areas: who they want present (immediate family only versus extended family, friends, and pastor); having durable power of attorney orliving will in place and interest in knowing about hospice programs[56] (more common in non-Hispanic whites [55] [56] [57]); and what the focus and tempo of the discussion should be (concerns about prognosis, irreversibility of the illness, quality of life, financial concerns and medical choices versus spiritual concerns, lack of trust, concerns about “do not resuscitate” orders and hospice, allowing adequate time for decisions and not feeling pressure to make them). [57] [58] More patients who are not of non-Hispanic white or African-American descent prefer to have surrogates informed of their prognosis and make treatment decisions for them. Some patients from Asian, Bosnian, or Italian-American cultures might perceive frank communication about a serious illness or prognosis as “at a minimum, disrespectful, and more significantly, inhumane.”[55] It is therefore important to determine from the patient whether the patient or his or her designees are to be involved in these discussions and to respect that choice as the exercise of that patient's autonomy. Every effort should be made to provide a qualified translator in conversations about prognosis and goals of care where the clinician is not a fluent speaker of the patient's language.[55]

Box 44-2 


One of an oncology clinician's hardest tasks is conducting a successful family meeting when the burden of disease-directed therapies exceeds the benefits. While chemotherapy or radiation might no longer offer benefit, it is never true that “there is nothing more we can do for you.” The following steps increase the chance that the meeting will enhance communication among clinicians, patients, and family members; relieve concerns of abandonment; enhance trust; and provide a conversational template for the tough times to come.



Schedule a pre-meeting (actual or virtual) and consider:



Who needs to be there (which family members, which members of the clinical team)?



What is the realistic prognosis or functional goal for the patient?



Who will run the meeting? How can others help (e.g., the palliative care clinicians, the social worker)?



Who will stay with the patient and family to debrief?



During the meeting



Everyone must be seated.



Introduce everyone present.






How do you think you (or “the patient”) is/are doing?



What changes have you seen in the last (days, weeks, months)?



What are you hoping for? And what else? And what else?



What are you most concerned about? What are your worst fears?



How can we help?






Answer their questions.



Provide key medical information, but AVOID giving medical details that obscure the big picture.



Example: The (disease) is clearly progressing despite our best efforts. In my best judgment, s/he has only (days, weeks, months) of good time left. S/he may well live longer, but this is the time when s/he will have the most energy, think the most clearly, and be most him/herself.






Counting silently to 20 helps.



Respond to their grief.






What do you still want to accomplish during your life?



What might be left undone if you were to die today?



What legacy do you want to leave to your family?



What do you want your children and grandchildren to remember about you?



How can we help NOW?



After the meeting



Review with your team how everyone is doing.



Make a plan for who will follow up next with the family.



Success is measured by how much they trust you and how little they feel abandoned. Feeling bad is normal and expected, both on your part and theirs; that does not mean that you were not successful.

Spiritual and Existential Causes

Dying patients also can suffer from spiritual and existential concerns. As cancer advances, patients face ongoing losses in terms of normal appearance and physical and mental function; roles in the family, community, or workplace; control, autonomy, and privacy.[2] Suffering arises when the illness robs patients of something fundamental to who they are, and consequently, each person's sources of suffering are unique. For example, although loss of mobility might be irrelevant to someone whose major avocation is reading, it can be devastating to an avid golfer. Young patients in particular search for the meaning in their existence, their illness, and their premature deaths. Counseling, including life reviews (“What have you been most proud of in your life? What surprised you most? What has made you happiest? What do you wish you could have done better or differently?”) may help dying patients to find a context and a meaning for their lives.

Some patients seem to blame themselves for their illness, even though scientific evidence does not support their belief. The concern could arise from a much larger sense of guilt about the patients’ sense of failure to live the lives they should have lived. Other patients—those with uncontrolled pain, for example—might feel that God is testing or punishing them. They search their consciences for a transgression so dreadful that it deserved such punishment.[59] A mental health professional or chaplain might be able to provide reassurance or to help patients develop strategies to right the wrongs they feel that they caused. Even dying patients can be provided hope that in the absence of a cure, they will still be able to heal these wounds.

Religious rituals can be an important source of comfort and healing to dying patients and their families.[59] Even in a hospital setting, therefore, every effort should be made to identify and accommodate these spiritual practices. Appropriate hospital or community religious leaders should be welcomed as part of the patients’ care team and should be assisted in performing the necessary rites after the patient dies.

Palliative Sedation for Refractory Symptoms

Sedation is considered when, despite expert evaluation and management, a patient who is near death continues to experience intolerable physical, psychological, or spiritual-existential distress.[60] Fewer than 5% of patients need palliative sedation; those who do most commonly suffer from refractory pain, cough, dyspnea, seizures, or delirium. The doses of opioid, benzodiazepine, or neuroleptic that are needed to control the symptom(s) sedate the patient. In other cases, the request for sedation for refractory symptoms arises when psychological or spiritual-existential concerns coexist with physical problems. Expert palliative care and pastoral consultation, evaluation by a psychiatrist, and discussions among the health care team, the patient, and the family members should be undertaken beforepalliative sedation is administered. Most often, all the people concerned reach a consensus on the need for and acceptability of sedation as a means of achieving symptom control. Obtaining formal informed consent, either from the patient or from the health care proxy, is recommended.

Medications that are used to produce the sedation that relieves the distressing symptom(s) include opioids, neuroleptics, intravenous benzodiazepines, and subcutaneous or intravenous barbiturates (seeTable 44-2 ).[61] Intravenous hydration or enteral or parenteral nutrition can be provided if they meet the goals set by the patient and family. They are rarely used in imminently dying patients whether or not the patients are sedated, as these patients are rarely suffering from hunger or thirst.[37]


Hospice care can be an enormous source of comfort to families of dying patients and professional caregivers, particularly those who have never witnessed a “natural” death. The team members have “been there,” can explain what is likely to happen, and can provide expert symptom management during the last hours to days. Hospice care might also decrease the risk of death of surviving elderly widows.[62]

American patients, however, are generally very resistant to accepting a terminal prognosis. [63] [64] To enroll in hospice, patients must acknowledge their 6 months prognosis, relinquish further curative therapy, and give informed consent. These requirements and common misconceptions about hospice care ( Table 44-3 ) can be serious obstacles to enrollment in hospice programs.[65]

Table 44-3   -- Common Misconceptions about Hospice



Patients enrolling in hospice must choose not to be resuscitated. Patients do not have to relinquish resuscitation to enroll in hospice. After they and their families fully understand the implications of the resuscitation, most patients elect not to be resuscitated.



Patients enrolled in hospice lose their primary physicians. The referring attending physician continues to direct and approve all the patient's care.



Hospice patients cannot be hospitalized and remain enrolled in hospice. Any hospice patient can be admitted to an acute, inpatient level of care to control a distressing symptom. Hospices can admit patients to contract beds in acute care hospitals or to their own inpatient facilities.



Hospice patients cannot participate in research projects while enrolled in hospice. Hospice patients have the right to participate in research studies. Hospice ethics and research committees usually evaluate the burden vs. the benefit of the research on the patient, family, and hospice staff.



Hospice nursing personnel do not provide sophisticated care. Hospice personnel provide expert palliative care that requires astute assessment and expert intervention tailored to the patient and family goals.



Patients can “use up” their hospice eligibility, so it is important not to enroll them too soon. Patients are initially certified for three months of service, after which their physician and the hospice medical director are asked to recertify them indefinitely, at two-month intervals. Patients who choose to revoke the hospice benefit to seek life-prolonging therapies may choose to re-enroll if their goals change.



Patients must have a live-in caregiver to enroll in hospice. With appropriate safeguards (e.g., “lock-boxes” to provide access in emergencies, and daily phone contact) hospice care can be safely provided to patients who “live alone.”



Financial Considerations

The hospice benefit (under Medicare) is a managed care, capped reimbursement program that reimburses a hospice program a per diem rate based on the patient's level of care (approximately $130 per day for routine or respite care, approximately $500 per day for inpatient acute care). In skilled nursing facilities, patients are receiving Medicare benefits for skilled care and cannot retain these and simultaneously enroll in the hospice Medicare benefit. If they choose a hospice program, either a Medicaid program or their families must pay the room and board costs in the nursing home. Medicaid, private insurance, and health maintenance providers reimburse the hospice at various rates; with the last, services must be approved through the plan's case manager. Aggressive palliation using chemotherapy or radiation is often prohibitively expensive for small to moderate-size hospices, given this reimbursement schedule. Individual hospices must decide both which treatments are consistent with their philosophy and which they can afford. Most hospices must secure additional funding from grants and donations to provide the mandated services.

Further, the majority (80%) of the services a hospice program delivers must, by law, be to patients at home. Fewer than 1% of patients who are enrolled in hospice programs die in hospitals. Although the hospice program provides some help, the majority of the patient's care at home must be provided by family or friends or by privately paid professional caregivers. Therefore, some patients will not be able to stay at home even with the maximum help that hospice personnel and volunteers can offer.

Clinical Care Provided

Patients in hospice programs are cared for by medically directed, interdisciplinary teams that include the referring physician, the hospice medical director, a nursing director of patient services, an office administrator, a nurse, a social worker, a bereavement counselor, a home health aide, a chaplain, and volunteers. The core team also can request additional consultations from physicians, registered dietitians, or occupational, speech, or physical therapists ( Table 44-4 ).

Table 44-4   -- Medicare-mandated Hospice Services


Medical director, nurses, social workers, home health aides, chaplains, volunteers, administrative personnel, medical consultations, occupational therapy, physical therapy, speech therapy, bereavement counseling


Prescription medications

Durable medical equipment and supplies


Radiation and chemotherapy

Laboratory and diagnostic procedures


Transportation when medically necessary for changes in level of care

When needed, continuous care at home or in a skilled nursing facility or inpatient setting

Respite care (care in a nursing facility that provides a “respite” for the caregivers)

Medicare Hospice Regulations: 42 Codes of Federal Regulations, Part 418, 1993.




Levels of Care

Hospice programs provide a continuum of care, from home to the inpatient setting. Whereas most patients are cared for in their homes, all Medicare-certified hospices, as stated in the 1983 federal regulations, are required to provide four levels of care: routine, continuous, inpatient, and respite. They also provide bereavement care both to support family members who are experiencing “anticipatory grief” before the patient's death and to communicate with and support the bereaved for the year after the death.

Routine care services are offered seven days a week, 24 hours a day. In addition to the patient's nurse, there is always an on-call registered nurse to provide phone support and make home visits when necessary. The registered nurse monitors the patient's comfort and works with the referring physician to adjust the treatment regimen as needed. Occupational, speech, or physical therapy and home health aides are provided as required. As death approaches, the patient's registered nurse reviews the dying process and provides the family or the inpatient or long-term care facility personnel with written materials that explain how they can determine that death is imminent. The nurse also describes the signs and symptoms of dying, instructs the family in emergency procedures, and is available for support while the patient dies.

Social workers offer support and family counseling and identify those who are at risk for a particularly painful bereavement period. They engage the patient and family in advance care and funeral planning and in completion of living wills and durable powers of attorney, provide applications for financial aid or waivers, and help to identify financing for additional home health care. They assist patients in making plans for their survivors (e.g., guardianship for children) and in completing life reviews; they often work alongside the chaplain to facilitate family reconciliation.

The team chaplain also offers home visits or coordinated care with the patient's own clergy. Chaplains are of help even to nonreligious patients who have spiritual or existential sources of distress (e.g., loss of hope, loss of connection or of love, a need for forgiveness or to forgive, or a need to identify the meaning of their lives).

Volunteers, who are usually available 2 to 4 hours a week, help families in nonclinical areas. A hospice medical director works with the team and the patient's primary physician to optimize symptom management.

Continuous home care is provided for patients who require continuous symptom management and for whom the home care setting remains appropriate. Patients with, for example, unrelieved cough, dyspnea, pain, or delirium can receive 24-hour nursing services until the problem is brought under control. Home visits from a hospice medical director can also be provided.

If the patient's symptoms cannot be controlled at home, inpatient care is offered. Orders are written by inpatient unit personnel and inpatient staff provide the care. The hospice team, however, continues to be responsible for the plan of care. Team members visit the patient as they would visit an outpatient, and the hospice medical director provides consultation as needed. The referring physician remains the primary physician and can bill for services under Medicare Part B.

Respite care is available generally for 5 days every month in a community skilled or intermediate nursing facility with which the hospice has a contract. The goal of the respite is either to provide a rest for the caregiver or to remove the patient to an adequate facility when the home is temporarily inadequate to meet the patient's care needs.

Medications and Treatments Provided

Hospice programs provide 95% of the cost of prescription drugs related to the terminal diagnosis and necessary for its palliative treatment (and many waive the other 5% if there is no insurance coverage). They also provide all durable medical equipment, supplies, and oxygen for needs related to the terminal diagnosis; laboratory and diagnostic procedures related to the terminal diagnosis; and transportation when this is medically necessary for changes in the patient's level of care (see Table 44-4 ).


Survivor's grief is a “process of experiencing the psychological, behavioral, social, and physical reactions to the perception of loss,” and it is distinguishable from the anxiety and depression that survivors might also be experiencing. [66] [67] The intensity of a survivor's grief is based on the characteristics of the mourner himself or herself, the nature of the death, and societal and cultural factors. Rando writes that being very attached to or very dependent on the deceased, having a great deal of ambivalence in one's feelings toward the deceased, having a personal history of clinical depression, or having difficulty with previous losses all can exacerbate the grief.[66] Recent studies of psychiatric outpatients confirmed the association between attachment and dependence and severity of grief but also found that having more ambivalence predicted for less grief.[68] Sudden or accidental death, suicide, or homicide magnify the grief.[66] The perception of a violent death is associated with major depression in the survivors, but religious rituals, a good support system, and involvement with hospice programs for more than 3 days decrease depression. [69] [70]

Each bereaved person's loss is unique, as are the experiences and manifestations of grief and mourning. Many people manifest typical symptoms of grief, some of which become less persistent as the people rebuild their lives. [66] [67] [71] [72] Recurrent intense symptoms typically occur at the anniversary of the death of the patient but can occur at unpredictable times, sparked by any type of reminder of the deceased. Although there are no rigid stages through which bereaved survivors pass, there are some typical manifestations of grief.

At the time of death, survivors appear numb, confused, or dazed and usually express some form of denial as the reality of the death intensifies.[73] Behavior can range from uncontrolled shrieking to an unnerving calm.

In the weeks and months that follow, pain intensifies as the absence of the person who has died asserts itself repeatedly. Mourners yearn for the one who is dead and experience repeated pangs of intense grief; denial is replaced by disorganization, depression, disinterest, and despair.[72] Survivors commonly experience the feelings, behaviors, physical symptoms, spiritual concerns, and thoughts listed inBox 44-3 .

Box 44-3 


Grief is associated with feelings, thoughts, and physical symptoms that include the following:

Common Feelings/Behaviors



Fear or anxiety



Anger or guilt



Depression or despair



Separation or longing



Sudden wave of mental pain



Confusion or inability to concentrate or make decisions



Tearfulness or crying

























Sense of the deceased's presence



Faith may be strengthened, altered, or abandoned

Common Physical Symptoms



Decreased or increased appetite



Decreased energy; weakness of muscles



Nausea and diarrhea



Decrease or increase in sex drive



Inability to sleep or sleeping too much



Feeling something stuck in the throat



Tightness in chest, breathlessness



Increased sensitivity to noise



Vivid dreams



Dry mouth

Common Thoughts



Preoccupation with “if only,” “what if,” and with memories



“Who am I now?”

Most people find that their grief lasts anywhere from 6 months to 2 years. However, remember that each person is a unique individual, and for some people, much more time is needed before the pain lessens.

What You Can Do



Allow yourself to feel the loss and to grieve over it.



Realize that your grief is unique.



Expect yourself to have some negative feelings.



Accept the help of others and let people know how they can help.



Give yourself time alone.






Read books about feelings of grief and the process of recovery.



Talk to others about your loss.



Attend community support groups.



Most important: Understand that it is very likely that your pain will lessen.

What It Is Better Not to Do



Try not to make major changes.



Resist withdrawing from social activities.



Avoid excessive smoking or drinking.

When You Should Call Us



If you have any questions or would like further information.



If you feel that you would like professional counseling.



If you need our help.

Abrahm JL, Cooley ME, Ricacho L: Efficacy of an educational bereavement program for families of veterans with cancer. J Cancer Ed 1995;10:207–212.


As the roles the deceased played in the marriage, the family, and the community become apparent to the survivors, they grieve each loss as they learn to cope with the increasing responsibilities. It is very difficult for people to move beyond loss if they never allow themselves to feel it in some way that is appropriate for them. Family obligations and unspoken strictures against demonstrations of grief can further impair a survivor's ability to experience the pain of the loss adequately. Putting those feelings away to deal with later or denying their existence only prolongs or inhibits the grieving process.

Often by a year or two after the loss, survivors accommodate to it.[66] They tacitly acknowledge the changes that must be made if they are ever to resume old relationships and responsibilities or to establish new ones and risk recurrent loss. Accommodation involves realizing that loving someone new need not mean betraying the memory of the person who has died.[66]

About 10% to 20% of survivors, however, suffer either from depression and/or from “complicated grief.” Patients with depression have “symptoms of sadness, impassivity, and psychomotor retardation,”[74] but they do not yearn for the deceased and they can accept the death. Depressed survivors benefit from counseling and consideration of pharmacologic treatment. [74] [75] Patients with complicated grief disorder, in contrast, have grief that causes serious functional impairments. They do have profound yearning for the deceased, as well as “numbness, feeling that part of oneself has died, assuming symptoms of the deceased, disbelief, or bitterness.” [74] [76] These patients are at increased risk of medical and psychiatric illness[77] and should be referred for psychiatric or spiritual counseling. Survivors with a history of attachment disorders (e.g., childhood abuse, childhood separation anxiety) or an aversion to lifestyle changes, who are unprepared for the death and unsupported after it, are at higher risk of developing “complicated grief.” Additional risks include a “dependent, close, confiding” relationship with the deceased.[74] There is no randomized control trial of a pharmacotherapy that is effective for the extreme grief symptoms, [73] [74] but a new effective psychotherapy has been developed specifically for this disorder that is superior to standard interpersonal psychotherapy.[78]

Skillfully communicating the diagnosis and terminal prognosis; providing emotional, psychological, and spiritual support and physical comfort; helping families to resolve outstanding issues; and making the death as peaceful as possible are all measures that diminish the suffering of the survivors. Survivors who feel unprepared for the patient's death have a higher risk of developing complicated grief.[69]

After the patient dies, survivors appreciate ongoing communication with the patient's physician.[75] When a formal bereavement program is offered, it usually takes place during the first year after the patient's death. After the formal program ends, the bereaved are welcome to continue to participate in any bereavement activities that have been meaningful to them ( Box 44-4 ). Survivors who experience severe grief symptoms or depression should be referred for formal assessment and consideration of pharmacologic treatment. [75] [79] Unfortunately, although the depression often responds to standard therapy, there is no widely accepted effective therapy for the symptoms of extreme grief.[75]

Box 44-4 


At the Time of Death

Family members are often in a state of shock; their moods can swing widely from feeling numb to feeling distraught. This volatility can be frightening, so our staff explains that this reaction is normal and that they should not worry about controlling themselves.

If I am sad, I cry with the family; if family members need to talk things over, I ask leading questions that help them share their feelings. Most families want to review the circumstances of the death, to assure themselves that the patient did not suffer and that everything that could have been done was done. I always try to find something for which I can praise them (e.g., their care of or their advocacy role for the patient) and add how lucky the patient was to have had them there when he or she needed them. If I cannot do this in person, I try to offer as much support as I can by telephone.

Initial Follow-up Call

We next call the family within 24 to 48 hours of the death to offer our condolences and our help. During this call, we offer comfort and provide a listener for a reiteration of the story of the death and the meaning of it for the bereaved. If necessary, we again reinforce the normality of the wide emotional swings or other symptoms of acute grief that they might have been experiencing. We listen empathetically and indicate our continued support. We end the conversation by asking whether we can keep in touch, and we let them know we will call again in about a month. We also send a condolence letter. If the family was involved with hospice, we remind them that the hospice team is still available to them.

Four to Six Weeks

About a month after we send the letter, we call again and offer to send a variety of materials we think would be helpful. These include a list of feelings and physical signs commonly experienced by those who are grieving and what to do or not to do about them (see Box 44-3 ).

We also include a list of support groups in the family's area, including those hosted by the hospice, because talking about their loss with skilled bereavement counselors or others who have suffered the same losses can help their recovery. Groups such as Widow-to-Widow, or, for parents who have lost a child, Compassionate Friends or Candlelighters (www.candle.org) provide much needed help with rebuilding a life.

Other Contacts

Because this has been shown to be a time of most need for bereaved families, we call again at six months and repeat our offer of various materials. We also participate in the once- or twice-yearly memorial services held by our cancer center and by the hospices who cared for our patients and their families. And, because we anticipate recurrence of grief, we send a letter at the first anniversary of the person's death, and we send a “Holiday letter” a few weeks before Thanksgiving letting them know that they are still in our thoughts and would welcome a call.

Our staff finds the process very rewarding. I have noticed that as I speak to the survivors at longer and longer intervals and begin to remember the patients as they were before the terminal stages, it helps me achieve closure and makes it easier for me to move on.

Abrahm JL, Cooley ME, Ricacho L: Efficacy of an educational bereavement program for families of veterans with cancer. J Cancer Ed 1995;10:207–212.



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