Despite progress in developing treatments that have improved life expectancies for patients with advanced-stage cancer, the American Cancer Society estimates that 609,820 Americans will die of cancer in 2023.[
Patient and family preferences may contribute to the observed patterns of care at the EOL. Patient recall of EOL discussions, spiritual care, or early palliative care, however, are associated with less-aggressive EOL treatment and/or increased utilization of hospice.[
This summary provides clinicians with information about anticipating the EOL; the common symptoms patients experience as life ends, including in the final hours to days; and treatment or care considerations. The decisions commonly made by patients, families, and clinicians are also highlighted, with suggested approaches. The goal of this summary is to provide essential information for high-quality EOL care.
In this summary, unless otherwise stated, evidence and practice issues as they relate to adults are discussed. The evidence and application to practice related to children may differ significantly from information related to adults. When specific information about the care of children is available, it is summarized under its own heading.
The Final Days to Weeks of Life
Providing excellent care toward the end of life (EOL) requires an ability to anticipate when to focus mainly on palliation of symptoms and quality of life instead of disease treatment.[
Providers attempting to make prognostic determinations may attend to symptoms that may herald the EOL, or they may observe trends in patients' functional status. For more information, see the Impending Death section.
For example, one group of investigators [
The investigators assigned patients to one of four states:
Of the 4,806 patients who died during the study period, 49% were recorded as being in the transitional state, and 46% were recorded as being in the stable state. For a patient who was in the transitional state, the probability of dying within a month was 24.1%, which was less than that for a patient in the EOL state (73.5%). The results suggest that serial measurement of the PPS may aid patients and clinicians in identifying the approach of the EOL.
In contrast to the data indicating that clinicians are relatively poor independent prognosticators, a study published in 2019 compared the relative accuracies of the PPS, the Palliative Prognostic Index, and the Palliative Prognostic Score with clinicians' predictions of survival for patients with advanced cancer who were admitted to an inpatient palliative care unit. At study enrollment, the investigators calculated the scores from the three prognostication tools for 204 patients and asked the unit's palliative care attending physician to estimate each patient's life expectancy (0–14 days, 15–42 days, or over 42 days). Reasons for admission included pain (90.7%), bowel obstruction (48.0%), delirium (36.3%), dyspnea (34.8%), weakness (27.9%), and nausea (23.5%).[
The study found that all four prognostic measures had similar levels of accuracy, with the exception of clinician predictions of survival, which were more accurate for 7-day survival. The authors hypothesized that clinician predictions of survival may be comparable or superior to prognostication tools for patients with shorter prognoses (days to weeks of survival) and may become less accurate for patients who live for months or longer.[
Impending death, or actively dying, refers to the process in which patients who are expected to die within 3 days exhibit a constellation of symptoms.[
Impending death is a diagnostic issue rather than a prognostic phenomenon because it is an irreversible physiological process. The ability to diagnose impending death with confidence is of utmost importance to clinicians because it could affect their communication with patients and families and inform complex health care decisions such as:[
Because clinicians often overestimate survival,[
One study examined five signs in cancer patients recognized as actively dying. Investigators reported that the median time to death from the onset of death rattle was 23 hours; from the onset of respiration with mandibular movement, 2.5 hours; from the onset of cyanosis in extremities, 1 hour; and from the onset of pulselessness on the radial artery, 2.6 hours.[
The Investigating the Process of Dying study systematically examined physical signs in 357 consecutive cancer patients.[
The late signs occurred mostly in the last 3 days of life, had lower frequency, and were highly specific for impending death in 3 days. Late signs included the following:[
In particular, the high positive likelihood ratios (LRs) of pulselessness on the radial artery (positive LR, 15.6), respiration with mandibular movement (positive LR, 10), decreased urine output (≤200 cc/d) (positive LR, 15.2), Cheyne-Stokes breathing (positive LR, 12.4), and death rattle (positive LR, 9) suggest that these physical signs can be useful for the diagnosis of impending death.[
Several other late signs that have been found to be useful for the diagnosis of impending death include the following:[
In conclusion, bedside physical signs may be useful in helping clinicians diagnose impending death with greater confidence, which can, in turn, assist in clinical decision making and communication with families.
Care During the Final Hours of Life
The recognition of impending death is also an opportunity to encourage family members to notify individuals close to the patient who may want an opportunity to "say goodbye." In the final hours of life, care should be directed toward the patient and the patient's loved ones. In addition to continuing a careful and thoughtful approach to any symptoms a patient is experiencing, preparing family and friends for a patient's death is critical. Preparations include the following:
For more information, see the Symptoms During the Final Months, Weeks, and Days of Life section.
Encouraging family members who desire to "do something" to participate in the care of the patient (e.g., moistening the mouth) may be helpful. In the final days to hours of life, patients often have limited, transitory moments of lucidity. Family members should be prepared for this and educated that this is a natural aspect of the dying process and not necessarily a result of medications being administered for symptoms or a sign that the patient is doing better than predicted. Despite their limited ability to interact, patients may be aware of the presence of others; thus, loved ones can be encouraged to speak to the patient as if he or she can hear them.
Educating family members about certain signs is critical. In the final hours of life, patients often experience a decreased desire to eat or drink, as evidenced by clenched teeth or turning from offered food and fluids. This behavior may be difficult for family members to accept because of the meaning of food in our society and the inference that the patient is "starving." Family members should be advised that forcing food or fluids can lead to aspiration. Reframing will include teaching the family to provide ice chips or a moistened oral applicator to keep a patient's mouth and lips moist. Finally, the death rattle is particularly distressing to family members. It is important to assure family members that death rattle is a natural phenomenon and to pay careful attention to repositioning the patient and explain why tracheal suctioning is not warranted.[
For patients who die in the hospital, clinicians need to be prepared to inquire about the family's desire for an autopsy, offering reassurance that the body will be treated with respect and that open-casket services are still possible, if desired.
Health care professionals, preferably in consultation with a chaplain or religious leader designated by the patient and/or family, need to explore with families any fears associated with the time of death and any cultural or religious rituals that may be important to them. Such rituals might include placement of the body (e.g., the head of the bed facing Mecca for an Islamic patient) or having only same-sex caregivers or family members wash the body (as practiced in many orthodox religions). When death occurs, expressions of grief by those at the bedside vary greatly, dictated in part by culture and in part by their preparation for the death. Chaplains are to be consulted as early as possible if the family accepts this assistance. Health care providers can offer to assist families in contacting loved ones and making other arrangements, including contacting a funeral home. For more information, see Spirituality in Cancer Care.
The available evidence provides some general description of frequency of symptoms in the final months to weeks of the end of life (EOL). However, when the results of published studies of symptoms experienced by patients with advanced cancer are being interpreted or compared, the following methodological issues need to be considered:[
Results of one of the larger and more comprehensive studies of symptoms in ambulatory patients with advanced cancer have been reported.[
Analysis of the changes in the mean symptom intensity of 10,752 patients (and involving 56,759 assessments) over time revealed two patterns:[
In terms of symptoms closer to the EOL, a prospective study documented the symptom profile in the last week of life among 203 cancer patients who died in acute palliative care units.[
The following sections summarize some of the common symptoms and potential approaches to ameliorating those symptoms, based on available evidence. A final note of caution is warranted. Symptoms often cluster, and the presence of a symptom should prompt consideration of other symptoms to avoid inadvertently worsening other symptoms in the cluster. For example, a systematic review of observational studies concluded that there were four common clusters of symptoms (anxiety-depression, nausea-vomiting, nausea-appetite loss, and fatigue-dyspnea-drowsiness-pain).[
Terminal delirium occurs before death in 50% to 90% of patients.[
Safety measures include protecting patients from accidents or self-injury while they are restless or agitated. The use of restraints should be minimized. Reorientation strategies are of little use during the final hours of life. Education and support for families witnessing a loved one's delirium are warranted.
There are few randomized controlled trials on the management of delirium in patients with terminal or irreversible delirium.[
In a small, open-label, prospective trial of 20 cancer patients who developed delirium while being treated with morphine, rotation to fentanyl reduced delirium and improved pain control in 18 patients.[
The onset of effect and non-oral modes of delivery are considered when an agent is being selected to treat delirium at the EOL. Agents that can be used to manage delirium include haloperidol, 1 mg to 4 mg orally, intravenously (IV), or subcutaneously.[
In addition, a small, double-blind, randomized trial at the University of Texas MD Anderson Cancer Center compared the relative sedating effects of scheduled haloperidol, chlorpromazine, and a combination of the two for advanced-cancer patients with agitated delirium.[
Of the 68 randomized patients, 45 patients were treated and monitored until death or discharge. Patients in all three groups demonstrated clinically significant decreases in RASS scores within 30 minutes and remained sedated at 24 hours. No statistically significant difference in sedation levels was observed between the three protocols. However, the chlorpromazine group was less likely to develop breakthrough restlessness requiring rescue doses or baseline dosing increases. The most common adverse event was hypotension, which was seen in 40% of patients in the haloperidol group, 31% of those in the chlorpromazine group, and 21% of those in the combination group.[
Although benzodiazepines (such as lorazepam) or antidopaminergic medications could exacerbate delirium, they may be useful for the treatment of hyperactive delirium that is not controlled by other supportive measures. In intractable cases of delirium, palliative sedation may be warranted. A randomized controlled trial compared the effect of lorazepam versus placebo as an adjunctive to haloperidol on the intensity of agitation in 58 patients with delirium in a palliative care unit.[
Caution should be exercised in the use of this protocol because of the increased risk of significant sedation. The reduction in agitation is directly proportional to increased sedation to the point of patients being "minimally responsive to verbal stimulus" or conversion to hypoactive delirium during the remaining hours of life.[
In dying patients, a poorly understood phenomenon that appears to be distinct from delirium is the experience of auditory and/or visual hallucinations that include loved ones who have already died (also known as EOL experience). Although patients may sometimes find these hallucinations comforting, fear of being labeled confused may prevent patients from sharing their experiences with health care professionals.[
Fatigue is one of the most common symptoms at the EOL and often increases in prevalence and intensity as patients approach the final days of life.[
Treatment options for dyspnea, defined as difficult, painful breathing or shortness of breath, include opioids, nasal cannula oxygen, fans, raising the head of the bed, noninvasive ventilation, and adjunctive agents.
Opioids are often considered the preferred first-line treatment option for dyspnea. However, the evidence supporting this standard is controversial, according to a 2016 Cochrane review that found only "low quality evidence" to support the use of opioids to treat breathlessness. The review's authors suggest that larger, more rigorous studies are needed to conclusively determine whether opioids are effective for treating dyspnea, and whether they have an impact on quality of life for patients suffering from breathlessness.[
Nasal cannula oxygen
The routine use of nasal cannula oxygen for patients without documented hypoxemia is not supported by the available data. One group of investigators reported a double-blind randomized controlled trial comparing the severity of morning and evening breathlessness as reported by patients who received either supplemental oxygen or room air via nasal cannula.[
A small pilot trial randomly assigned 30 Chinese patients with advanced cancer with unresolved breathlessness to either usual care or fan therapy.[
Raising the head of the bed
Because dyspnea may be related to position-dependent changes in ventilation and perfusion, it may be worthwhile to try to determine whether a change in the patient's positioning in bed alleviates air hunger.
A randomized trial compared noninvasive ventilation (with tight-fitting masks and positive pressure) with supplemental oxygen in a group of advanced-cancer patients in respiratory failure who had chosen to forgo all life support and were receiving palliative care.[
It should be noted that all patients were given subcutaneous morphine titrated to relief of dyspnea. Whether patients with less severe respiratory status would benefit is unknown. The generalizability of the intervention is limited by the availability of equipment for noninvasive ventilation. In addition, while noninvasive ventilation is less intrusive than endotracheal intubation, a clear understanding of the goals of the intervention and whether it will be electively discontinued should be established.
Bronchodilators, corticosteroids, and antibiotics may be considered in select situations, provided the use of these agents are consistent with the patient's goals of care. Bronchodilators may help patients with evidence of bronchoconstriction on clinical examination. Their use carries a small but definite risk of anxiousness and/or tachycardia. Corticosteroids may also be of benefit but carry a risk of anxiety, insomnia, and hyperglycemia. The treatment of potential respiratory infections with antibiotics likewise calls for a consideration of side effects and risks.
The prevalence of pain is between 30% and 75% in the last days of life.[
Some patients, family members, and health care professionals express concern that opioid use may hasten death. Several studies refute the fear of hastened death associated with opioid use. In several surveys of high-dose opioid use in hospice and palliative care settings, no relationship between opioid dose and survival was found.[
The principles of pain management remain similar to those for patients earlier in the disease trajectory, with opioids being the standard option. Because consciousness may diminish during this time and swallowing becomes difficult, practitioners need to anticipate alternatives to the oral route. In one study, as patients approached death, the use of intermittent subcutaneous injections and IV or subcutaneous infusions increased.[
Cough is a relatively common symptom in patients with advanced cancer near the EOL. In one small study, 33% of patients with advanced cancer who were enrolled in hospice and who completed the Memorial Symptom Assessment Scale reported cough as a troubling symptom.[
The cough reflex protects the lungs from noxious materials and clears excess secretions. The reflex is initiated by stimulation of peripheral cough receptors, which are transmitted to the brainstem by the vagus nerve. Activation of the central "cough center" mechanism causes a deep inspiration, followed by expiration against a closed glottis; then the glottis opens, allowing expulsion of the air.[
As discussed in the Dyspnea section, the use of bronchodilators, corticosteroids, or inhaled steroids is limited to specific indications, given the potential risks and the lack of evidence of benefit outside of specific indications.
The prevalence of constipation ranges from 30% to 50% in the last days of life.[
Functional dysphagia and structural dysphagia occur in a large proportion of cancer patients in the last days of life. Specifically, patients often experience difficulty swallowing both liquids and solids, which is often associated with anorexia and cachexia. In one study of cancer patients, the oral route of opioid administration was continued in 62% of patients at 4 weeks before death, in 43% at 1 week before death, and in 20% at 24 hours before death.[
Artificial nutrition is of no known benefit at the EOL and may increase the risk of aspiration and/or infections. Instead of tube-feeding or ordering nothing by mouth, providing a small amount of food for enjoyment may be reasonable if a patient expresses a desire to eat. For more information, see the sections on Artificial Hydration and Artificial Nutrition.
Death rattle, also referred to as excessive secretions, occurs when saliva and other fluids accumulate in the oropharynx and upper airways in a patient who is too weak to clear the throat. Rattle does not appear to be distressing for the patient; however, family members may perceive death rattle as indicating the presence of untreated dyspnea. Thus, the family will benefit from learning about the nature of this symptom and that death rattle is not associated with dyspnea.
Rattle is an indicator of impending death, with an incidence of approximately 50% to 60% in the last days of life and a median onset of 16 to 57 hours before death.[
In one retrospective chart review, rattle was relieved in more than 90% of patients with salivary secretions, while patients with secretions of pulmonary origin were much less likely to respond to treatment.[
The results of clinical trials examining various pharmacological agents for the treatment of death rattle have so far been negative.[
Despite the lack of clear evidence, pharmacological therapies are used frequently in clinical practice.[
Given the limited efficacy of pharmacological interventions for death rattle, clinicians should consider factors that can help prevent it. In one secondary analysis of an observational study of patients who were dying of abdominal malignancies, audible death rattle was correlated with the volume of IV hydration administered. Patients who received more than 500 mL of IV fluid in the week before death had a significantly higher risk of developing death rattle in the 48 hours before death than patients who received less than 500 mL of IV fluid. Along with patient wishes and concomitant symptoms, clinicians should consider limiting IV hydration in the final days before death.[
Opioid-Induced Neurotoxicity and Myoclonus
Health care professionals need to monitor patients for opioid-induced neurotoxicity, which can cause symptoms such as myoclonus, hallucinations, hyperalgesia, seizures, and confusion, and which may mimic terminal delirium. One retrospective study examined 390 patients with advanced cancer at the University of Texas MD Anderson Cancer Center who had been taking opioids for 24 hours or longer and who received palliative care consultations. The study suggested that 15% of these patients developed at least one symptom of opioid-induced neurotoxicity, the most common of which was delirium (47%).[
Myoclonus is defined as sudden and involuntary movements caused by focal or generalized muscle contractions. The duration of contractions is brief and may be described as shocklike. There are many potential causes of myoclonus, most of which probably stem from the metabolic derangements anticipated as life ends. Medications, particularly opioids, are another potential etiology. The reported prevalence of opioid-induced myoclonus ranges greatly, from 2.7% to 87%.[
When opioids are implicated in the development of myoclonus, rotation to a different opioid is the primary treatment. In patients with rapidly impending death, the health care provider may choose to treat the myoclonus rather than make changes in opioids during the final hours. Benzodiazepines, including clonazepam, diazepam, and midazolam, have been recommended.[
There are no reliable data on the frequency of fever. A prospective study of 232 adults with terminal cancer admitted to a hospice and palliative care unit in Taiwan indicated that fever was uncommon and of moderate severity (mean score, 0.37 on a scale of 1–3).[
There are no data showing that fever materially affects the quality of the experience of the dying person. While infection may cause a fever, other etiologies such as medications or the underlying cancer are to be strongly considered. While the main objective in the decision to use antimicrobials is to treat clinically suspected infections in patients who are receiving palliative or hospice care,[
Hemorrhage is an uncommon (6%–14%) yet extremely distressing event, especially when it is sudden and catastrophic.[
The management of catastrophic bleeding may include identification of patients who are at risk of catastrophic bleeding and careful communication about risk and potential management strategies. However, two qualitative interview studies of clinicians whose patients experienced catastrophic bleeding at the EOL suggest that it is often impossible to anticipate bleeding and that a proactive approach may cause patients and families undue distress.[
Another strategy is to prepare to administer anxiolytics or sedatives to patients who experience catastrophic bleeding, between the start of the bleeding and death. However, there is little evidence supporting the effectiveness of this approach;[
After the death of a patient from a catastrophic hemorrhage, family members and team members are encouraged to verbalize their emotions regarding the experience, and their questions need to be answered.
Palliative Sedation to Treat EOL Symptoms
In rare situations, EOL symptoms may be refractory to all of the treatments described above. In such cases, palliative sedation may be indicated, using benzodiazepines, barbiturates, or neuroleptics. Refractory dyspnea is the second most common indication for palliative sedation, after agitated delirium.[
The Decision to Discontinue Disease-Directed Therapies
A significant proportion (approximately 30%) of patients with advanced cancer continue to receive chemotherapy toward the end of life (EOL), including a small number (2%–5%) who receive their last dose of chemotherapy within 14 days of death.[
Ultimately, the decision to initiate, continue, or forgo chemotherapy should be made collaboratively and is ideally consistent with the expected risks and benefits of treatment within the context of the patient's goals of care. However, the following reasons independent of the risks and benefits may lead a patient to prefer chemotherapy and are potentially worth exploring:
The era of personalized medicine has altered this risk/benefit ratio for certain patients. Genomic tumor testing is indicated for multiple tumor types. Finding actionable mutations for targeted therapy is vital for many patients with metastatic cancers.
A 2021 study showed that patients with non-small cell lung cancer (NSCLC) who had EGFR, ALK, or ROS1 mutations and received targeted therapy had better quality-of-life and symptom scores over time, compared with patients without targetable mutations.[
Immune checkpoint inhibitors have revolutionized the standard of care for multiple cancers. These drugs are increasingly used in older patients and those with poorer performance status for whom traditional chemotherapy may no longer be appropriate, though they may still be associated with unwanted side effects. Predictive factors for whether any given patient will have a significant response to these newer agents are often unclear, making prognostication challenging.[
Data on immune checkpoint inhibitor use at the EOL are limited, but three single-institution, retrospective studies show that immunotherapy use in the last 30 days of life is associated with lower rates of hospice enrollment and a higher risk of dying in the hospital, as well as financial toxicity and minimal clinical benefit.[
The Decision to Enroll in Hospice
Patients with advanced cancer who receive hospice care appear to experience better psychological adjustment, fewer burdensome symptoms, increased satisfaction, improved communication, and better deaths without hastening death.[
Multiple patient demographic factors (e.g., younger age, married status, female gender, White race, greater affluence, and geographic region) are associated with increased hospice enrollment. In one study, however, physician characteristics were more important than patient characteristics in determining hospice enrollment.[
There are many potential barriers to timely hospice enrollment. Forgoing disease-directed therapy is one of the barriers cited by patients, caregivers, physicians, and hospice services. The Medicare Care Choices Model, a novel Centers for Medicare & Medicaid Services (CMS) pilot program, is evaluating a new supportive care model that allows beneficiaries to receive supportive care from selected hospice providers, alongside therapy directed toward their terminal condition. This 5-year project enrolled its first cohort of patients in January 2016 and the second cohort in January 2018. CMS will evaluate whether providing these supportive services can improve patient quality of life and care, improve patient and family satisfaction, and inform a new payment system for the Medicare and Medicaid programs.
The purpose of this section is to provide the oncology clinician with insights into the decision to enroll in hospice, and to encourage a full discussion of hospice as an important EOL option for patients with advanced cancer. The related study [
Barriers are summarized in the following subsections on the basis of whether they arise predominantly from the perspective of the patient, caregiver, physician, or hospice, including eligibility criteria for enrollment.
Patients often express a sense that it would be premature to enroll in hospice, that enrolling in hospice means giving up, or that enrolling in hospice would disrupt their relationship with their oncologist.[
Patients may agree to enroll in hospice in the final days of life only after aggressive medical treatments have clearly failed. Given the likely benefit of longer times in hospice care, patient-level predictors of short hospice stays may be particularly relevant. One group of investigators conducted a retrospective cohort study of 64,264 adults with cancer admitted to hospice.[
A diagnosis of depression may also affect how likely patients are to enroll in hospice. A 2018 retrospective cohort study of 13,827 patients with NSCLC drew data from the Surveillance, Epidemiology, and End Results (SEER)–Medicare database to examine the association between depression and hospice utilization. The authors found that NSCLC patients with precancer depression (depression recorded during the 3–24 months before cancer diagnosis) and patients with diagnosis-time depression (depression recorded between 3 months before and 30 days after cancer diagnosis) were more likely to enroll in hospice than were NSCLC patients with no recorded depression diagnosis (subhazard ratio [SHR], 1.19 and 1.16, respectively).[
Patients with precancer depression were also more likely to spend extended periods (≥90 days) in hospice care (adjusted OR, 1.29). In contrast, patients with postdiagnosis depression (diagnosed >30 days after NSCLC diagnosis) were less likely to enroll in hospice (SHR, 0.80) than were NSCLC patients without depression.[
The authors hypothesized that patients with precancer depression may be more likely to receive early hospice referrals, especially given previously established links between depression and high symptom burden in patients with advanced cancer. They also suggested that enhanced screening for depression in patients with cancer may impact hospice enrollment and quality of care provided at the EOL.[
In a survey of 53 caregivers of patients who died of lung cancer while in hospice, 35% of caregivers felt that patients should have received hospice care sooner. The highest rates of agreement with potential reasons for deferring hospice enrollment were for the following three survey items:[
Only 22% of caregivers agreed that the family member delayed enrollment because enrolling in hospice meant giving up hope.
In a survey of 273 physicians, 65% agreed that a barrier to hospice enrollment was the patient preference for simultaneous anticancer treatment and hospice care. Almost one-half of physicians believed (incorrectly) that patients must have do-not-resuscitate and do-not-intubate orders in place to qualify for hospice.[
The Medicare hospice benefit requires that physicians certify patients' life expectancies that are shorter than 6 months and that patients forgo curative treatments. Patients who are enrolled in hospice receive all care related to their terminal illnesses through hospice, although most hospice reimbursement comes through a fixed per diem. Thus, hospices may have additional enrollment criteria.
One group of investigators conducted a national survey of 591 hospices that revealed 78% of hospices had at least one policy that could restrict enrollment.[
A further challenge related to hospice enrollment is that the willingness to forgo chemotherapy does not identify patients who have a high perceived need for hospice care. Investigators conducted conjoint interviews of 300 patients with cancer and 171 family caregivers to determine the perceived need for five core hospice services (visiting nurse, chaplain, counselor, home health aide, and respite care).[
The following family factors predicted a greater perceived need for hospice services:
Choosing the Desired Place of Death
Many patients with advanced-stage cancer express a desire to die at home,[
Enrollment in hospice increases the likelihood of dying at home, but careful attention needs to be paid to caregiver support and symptom control. One group of investigators analyzed a cohort of 5,837 hospice patients with terminal cancer for whom the patient's preference for dying at home was determined.[
Conversely, patients were less likely to die at home (OR, <1) if there was:
However, not all patients prefer to die at home, e.g., patients who are unmarried, non-White, and older.[
Approximately one-third to one-half of pediatric patients who die of cancer die in a hospital.[
A retrospective analysis of 321 pediatric cancer patients who died while enrolled in the palliative care service at St. Jude Children's Research Hospital suggests that the following factors (with ORs) were associated with a higher likelihood of dying in the pediatric ICU:[
A separate retrospective analysis of 121 pediatric and young adult patients in the United Kingdom who died between 2012 and 2016 showed that 72% of patients who identified a preferred location of death achieved this wish. They included all patients who wanted to die at the hospital or under hospice care. In contrast, only 58% of patients who wished to die at home achieved this desire, which was often complicated by rapid deterioration. Treatment that focused on supportive care, rather than active chemotherapy or radiotherapy, increased the odds of achieving the patient's preferred place of death (OR, 3.19; P = .04).[
A necessary goal of high-quality end-of-life (EOL) care is the alleviation of distressing symptoms that can lead to suffering. An important strategy to achieve that goal is to avoid or reduce medical interventions of limited effectiveness and high burden to the patients. There is, however, a great deal of confusion, anxiety, and miscommunication around the question of whether to utilize potentially life-sustaining treatments (LSTs) such as mechanical ventilation, total parenteral nutrition, and dialysis in the final weeks or days of life. To ensure that the best interests of the patient—as communicated by the patient, family, or surrogate decision maker—determine the decisions about LSTs, discussions can be organized around the following questions:
Medicine is a moral enterprise. The decisions clinicians make are often highly subjective and value laden but seem less so because, equally often, there is a shared sense of benefit, harm, and what is most highly valued. Occasionally, disagreements arise or a provider is uncertain about what is ethically permissible. For example, an oncologist may favor the discontinuation or avoidance of LST, given the lack of evidence of benefit or the possibility of harm—including increasing the suffering of the dying person by prolonging the dying process—or based on concerns that LST interferes with the patient accepting that life is ending and finding peace in the final days. A provider also may be uncertain about whether withdrawing treatment is equivalent to causing the patient's death. Conversely, the patient may continue to request LST on the basis of personal beliefs and a preference for potential prolonged life, independent of the oncologist's clinical risk-benefit analysis.
Individual values inform the moral landscape of the practice of medicine. The potential conflicts described above are opportunities to refine clinicians' understanding of their beliefs and values and to communicate their moral reasoning to each other as a sign of integrity and respect.[
In the event of conflict, an ethics consult may be necessary to identify the sources of disagreement and potential solutions, although frameworks have been proposed to guide the clinician.[
Respect for patient autonomy is an essential element of the relationship between oncology clinician and patient. Respect for autonomy encourages clinicians to elicit patients' values, goals of care, and preferences and then seek to provide treatment or care recommendations consistent with patient preferences.[
Perceived conflicts about the issue of patient autonomy may be avoided by recalling that promoting patient autonomy is not only about treatments administered but also about discussions with the patient.[
The following criteria to consider forgoing a potential LST are not absolute and remain a topic of discussion and debate; however, they offer a frame of reference for deliberation:
Religious and Spiritual Beliefs
Awareness of the importance of religious beliefs and spiritual concerns within medical care has increased substantially over the last decade. National consensus guidelines, published in 2018, recommended the following:[
An interprofessional approach is recommended: medical personnel, including physicians, nurses, and other professionals such as social workers and psychologists, are trained to address these issues and link with chaplains, as available, to evaluate and engage patients. A survey of nurses and physicians revealed that most nurses (74%) and physicians (60%) desire to provide spiritual care, which was defined as "care that supports a patient's spiritual health."[
Evidence strongly supports that most cancer patients desire dialogue about these issues with their physicians, other staff as appropriate, and hospital chaplains, if indicated.[
Finally, it has been shown that addressing religious and spiritual concerns earlier in the terminal-care process substantially decreases the likelihood that patients will request aggressive EOL measures.[
For more information, see Spirituality in Cancer Care.
The potential indications for artificial hydration in the final weeks or days of life may be broadly defined by the underlying goal of either temporarily reversing or halting clinical deterioration or improving the comfort of the dying patient.[
Although uncontrolled experience suggested several advantages to artificial hydration in patients with advanced cancer, a well-designed, randomized trial of 129 patients enrolled in home hospice demonstrated no benefit in parenteral hydration (1 L of normal saline infused subcutaneously over 4 hours) compared with placebo (100 mL of normal saline infused subcutaneously over 4 hours).[
A prospective evaluation of the outcomes of 161 patients with advanced-stage abdominal cancers who received parenteral hydration in accordance with Japanese national guidelines near the EOL suggests there is little harm or benefit in hydration.[
Any discussion about the risks or benefits of artificial hydration must include a consideration of patient and family perspectives.[
The following discussion excludes patients for whom artificial nutrition may facilitate further anticancer treatment or for whom bowel obstruction is the main manifestation of their advanced cancer and for whom enteral or total parenteral nutrition may be of value.[
The decisions about whether to provide artificial nutrition to the dying patient are similar to the decisions regarding artificial hydration. The American Academy of Hospice and Palliative Medicine (AAHPM) recommends that individual clinical situations be assessed using clinical judgment and skill to determine when artificial nutrition is appropriate. Recognizing that the primary intention of nutrition is to benefit the patient, AAHPM concludes that withholding artificial nutrition near the EOL may be appropriate medical care if the risks outweigh the possible benefit to the patient.[
Food should be offered to patients consistent with their desires and ability to swallow. The benefit of providing artificial nutrition in the final days to weeks of life, however, is less clear. One study has concluded that artificial nutrition—specifically, parenteral nutrition—neither influenced the outcome nor improved the quality of life in terminally ill patients.[
Providing artificial nutrition to patients at the EOL is a medical intervention and requires establishing enteral or parenteral access. Considerations of financial cost, burden to patient and family of additional hospitalizations and medical procedures, and all potential complications must be weighed against any potential benefit derived from artificial nutrition support.
In discussions with patients, the oncology clinician needs to recognize that the patient perception of benefit is worth exploring; as a compromise or acknowledgment of respect for the patient's perspective, a time-limited trial may be warranted.[
The administration of anti-infectives, primarily antibiotics, in the last days of life is common, with antibiotic use reported in patients in the last week of life at rates ranging from 27% to 78%.[
An additional setting in which antimicrobial use may be warranted is that of contagious public health risks such as tuberculosis.[
In general, most practitioners agree with the overall focus on patient comfort in the last days of life rather than providing curative therapies with unknown or marginal benefit, despite their ability to provide the therapy.[
Anemia is common in patients with advanced cancer; thrombocytopenia is less common and typically occurs in patients with progressive hematological malignancies. The decision to transfuse either packed red cells or platelets is based on a careful consideration of the overall goals of care, the imminence of death, and the likely benefit and risks of transfusions. The decision to use blood products is further complicated by the potential scarcity of the resource and the typical need for the patient to receive transfusions in a specialized unit rather than at home.
There are no randomized or controlled prospective trials of the indications, safety, or efficacy of transfused products. It should be recognized, however, that many patients will have received transfusions during active disease treatment or periods of supportive care. Such patients may have notions of the importance of transfusions related to how they feel and their life expectancies.
Several considerations may be relevant to the decision to transfuse red blood cells:
Broadly defined, resuscitation includes all interventions that provide cardiovascular, respiratory, and metabolic support necessary to maintain and sustain the life of a dying patient. It is important for patients, families, and proxies to understand that choices may be made to specify which supportive measures, if any, are given preceding death and at the time of death. People often believe that there is plenty of time to discuss resuscitation and the surrounding issues; however, many dying patients do not make choices in advance or have not communicated their decisions to their families, proxies, and the health care team. If these issues are unresolved at the time of EOL events, undesired support and resuscitation may result. Studies suggest that this aggressive care is associated with worse patient quality of life and worse adjustment to bereavement for loved ones.[
Narrowly defined, a do-not-resuscitate (DNR) order instructs health care providers that, in the event of cardiopulmonary arrest, cardiopulmonary resuscitation (CPR, including chest compressions and/or ventilations) should not be performed and that natural death be allowed to proceed. DNR orders must be made before cardiac arrest and may be recommended by physicians when CPR is considered medically futile or would be ineffective in returning a patient to life. A DNR order may also be made at the instruction of the patient (or family or proxy) when CPR is not consistent with the goals of care.
It is advisable for a patient who has clear thoughts about these issues to initiate conversations with the health care team (or appointed health care agents in the outpatient setting) and to have forms completed as early as possible (i.e., before hospital admission), before the capacity to make such decisions is lost. Although patients with end-stage disease and their families are often uncomfortable bringing up the issues surrounding DNR orders, physicians and nurses can tactfully and respectfully address these issues appropriately and in a timely fashion. Lack of standardization in many institutions may contribute to ineffective and unclear discussions around DNR orders.[
No Further Escalation of Care
Patients with advanced cancer are often unprepared for a decline in health status near the end of life (EOL) and, as a consequence, they are admitted to the hospital for more aggressive treatments. This complicates EOL decision making because the treatments may prolong life, or at least are perceived as accomplishing that goal. At that point, patients or families may express ambivalence or be reluctant to withdraw treatments rather than withhold them.
One strategy to explore is preventing further escalation of care. The goal of this strategy is to provide a bridge between full life-sustaining treatment (LST) and comfort care, in which the goal is a good death. It has been suggested that clinicians may encourage no escalation of care because of concerns that the intensive medical treatments will prevent death, and therefore the patient will have missed the "opportunity to die."[
Conversely, some situations may warrant exploring with the patient and/or family a time-limited trial of intensive medical treatments. The patient or surrogates may choose to withdraw all LST if there is no improvement during the limited trial.[
Withdrawal of Ventilatory Support
Two methods of withdrawal have been described: immediate extubation and terminal weaning.[
Immediate extubation. Immediate extubation includes providing parenteral opioids for analgesia and sedating agents such as midazolam, suctioning to remove excess secretions, setting the ventilator to "no assist" and turning off all alarms, and deflating the cuff and removing the endotracheal tube. Gentle suctioning of the oral cavity may be necessary, but aggressive and deep suctioning should be avoided. In some cases, patients may appear to be in significant distress. Analgesics and sedatives may be provided, even if the patient is comatose. Family members and others who are present should be warned that some movements may occur after extubation, even in patients who have no brain activity. Such movements are probably caused by hypoxia and may include gasping, moving extremities, or sitting up in bed.[
Terminal weaning. Terminal weaning entails a more gradual process. Ventilator rate, oxygen levels, and positive end-expiratory pressure are decreased gradually over a period of 30 minutes to a few hours. A patient who survives may be placed on a T-piece; this may be left in place, or extubation may proceed. There is some evidence that the gradual process in a patient who may experience distress allows clinicians to assess pain and dyspnea and to modify the sedative and analgesic regimen accordingly.[
Paralytic agents have no analgesic or sedative effects, and they can mask patient discomfort. These neuromuscular blockers need to be discontinued before extubation. Guidelines suggest that these agents should never be introduced when the ventilator is being withdrawn; in general, when patients have been receiving paralytic agents, these agents need to be withdrawn before extubation. The advantage of withdrawal of the neuromuscular blocker is the resultant ability of the health care provider to better assess the patient's comfort level and to allow possible interaction between the patient and loved ones. One notable exception to withdrawal of the paralytic agent is when death is expected to be rapid after the removal of the ventilator and when waiting for the drug to reverse might place an unreasonable burden on the patient and family.[
Regardless of the technique employed, the patient and setting must be prepared. Monitors and alarms are turned off, and life-prolonging interventions such as antibiotics and transfusions need to be discontinued. Family members should be given sufficient time to prepare, including planning for the presence of all loved ones who wish to be in attendance. They need to be given information about what to expect during the process; some may elect to remain out of the room during extubation. Chaplains or social workers may be called to provide support to the family.
Suffering at the End of Life (EOL)
Published in 2013, a prospective observational study of 64 patients who died of cancer serially assessed symptoms, symptom intensity, and whether symptoms were unbearable.[
Informal caregiver perspectives
Caregiver suffering is a complex construct that refers to severe distress in caregivers' physical, psychosocial, and spiritual well-being. A number of studies have reported strong associations between patients' and caregivers' emotional states. In a systematic review of 19 descriptive studies of caregivers during the palliative, hospice, and bereavement phases, analysis of patient-caregiver dyads found mutuality between the patient's condition and the caregiver's response. Caregivers were found to be at increased risk of physical and psychological burden across studies, with caregiver distress sometimes exceeding that of the patient.[
Several studies have categorized caregiver suffering with the use of dyadic analysis. In a qualitative study involving 22 dyadic semistructured interviews, caregivers dealing with advanced medical illness, including cancer, reported both unique and shared forms of suffering. Suffering was characterized as powerlessness, threat to the caregiver's identity, and demands exceeding resources.[
Palliative sedation may be defined as the deliberate pharmacological lowering of the level of consciousness, with the goal of relieving symptoms that are unacceptably distressing to the patient and refractory to optimal palliative care interventions. In considering a patient's request for palliative sedation, clinicians need to identify any personal biases that may adversely affect their ability to respond effectively to such requests. Several points need to be borne in mind:
The following questions may serve to organize discussions about the appropriateness of palliative sedation within health care teams and between clinicians, patients, and families:
Indications for palliative sedation
The two broad indications for palliative sedation are refractory physical symptoms and refractory existential or psychological distress. A retrospective study at the MD Anderson Cancer Center in Houston included 1,207 patients admitted to the palliative care unit. Palliative sedation was used in 15% of admissions. The most common indications were delirium (82%) and dyspnea (6%).[
The use of palliative sedation for refractory existential or psychological symptoms is highly controversial. In a survey of the attitudes and experiences of more than 1,000 U.S. physicians toward intentional sedation to unconsciousness until death revealed that 68% of respondents opposed palliative sedation for existential distress. Of note, only 10% of physician respondents had prescribed palliative sedation in the preceding 12 months.[
One potential objection or concern related to palliative sedation for refractory existential or psychological distress is unrecognized but potentially remediable depression. For more information, see the Requests for Hastened Death section.
Further objections or concerns include (1) whether the principle of double effect, an ethical basis for the use of palliative sedation for refractory physical distress, is adequate justification; and (2) cultural expectations about psychological or existential suffering at the EOL. The principle of double effect is based on the concept of proportionality. When applied to palliative sedation, this principle supports the idea that the intended effect of palliative sedation (i.e., relief of suffering) may justify a foreseeable-but-unintended consequence (such as possibly shortening life expectancy—although this is not supported by data, as mentioned above —or eliminating the opportunity to interact with loved ones) if the intended (positive) outcome is of greater value than the unintended (negative) outcome.[
Intended level of sedation
Another decision to be made is whether the intended level of sedation is unconsciousness or a level associated with relief of the distress attributed to physical or psychological symptoms. In a survey of U.S. physicians,[
Intended duration of sedation
Palliative sedation may be provided either intermittently or continuously until death. If a clinician anticipates that a distressing symptom will improve with time, then that clinician should discuss with the patient any recommendations about a deliberate reduction in the depth of sedation to assess whether the symptoms persist. Furthermore, deliberate reductions in the depth of sedation may be appropriate if there is a desire for communication with loved ones.
For example, a single-center observational study monitored 89 (mostly male) hospice patients with cancer who received either intermittent or continuous palliative sedation with midazolam, propofol, and/or phenobarbital for delirium (61%), dyspnea (20%), or pain (15%). Mental status changes in the 37 patients who received intermittent palliative sedation for delirium were as follows, after sedation was lightened: 43.2% unchanged, 40.6% improved, and 16.2% worsened. Unsurprisingly, mental status remained the same or worsened for all patients who received continuous palliative sedation for delirium. Notably, median survival time was only 1 day for patients who received continuous sedation, compared to 6 days for the intermittent palliative sedation group, though the authors hypothesize that this difference may be attributed to a poorer baseline clinical condition in the patients who received continuous sedation rather than to a direct effect of continuous sedation.[
Role of potentially LSTs during palliative sedation
The intent of palliative sedation is to relieve suffering; it is not to shorten life. The decision to discontinue or maintain treatments such as artificial hydration or nutrition requires a review of the patient's goals of care and the potential for benefit or harm. In general, the absence of evidence for benefit seems to justify recommendations to forgo LSTs in the context of palliative sedation. On the other hand, open lines of communication and a respectful and responsive awareness of a patient's preferences are important to maintain during the dying process, so the clinician should not overstate the potential risks of hydration or nutrition. There is consensus that decisions about LSTs are distinct from the decision to administer palliative sedation.
Requests for Hastened Death
Potential reasons for requests
Requests for hastened death or statements that express a desire to die vary from expression of a temporary or passive wish to a sustained interest in interventions to end life or a statement of intent to plan or die by suicide.[
Requests for hastened death provide the oncology clinician with an opportunity to explore and respond to the dying patient's experience in an attentive and compassionate manner. From the patient's perspective, the reasons for requests for hastened death are multiple and complex and include the following:
The cited studies summarize the patient's perspectives. Surveys of health care providers demonstrate similar findings and reasons.
Responding to requests
Recommendations are based on principles of counseling and expert opinion. Specific studies are not available. The first and most important consideration is for health care providers to maintain awareness of their personal reactions to requests or statements. It is imperative that the oncology clinician expresses a supportive and accepting attitude. Providers who are too uncomfortable to engage in a discussion need to explain to a patient the need for a referral to another provider for assistance.[
Family members are likely to experience grief at the death of their loved one. If left unattended, loss, grief, and bereavement can become complicated, leading to prolonged and significant distress for either family members or clinicians. Furthermore, clinicians are at risk of experiencing significant grief from the cumulative effects of many losses through the deaths of their patients. Burnout has also been associated with unresolved grief in health care professionals. For more information, see Grief, Bereavement, and Coping With Loss.
Oncologists and nurses caring for terminally ill cancer patients are at risk of suffering personally, owing to the clinical intensity and chronic loss inherent in their work. Lack of training in advance care planning and communication can leave oncologists vulnerable to burnout, depression, and professional dissatisfaction.[
One study made an important conceptual distinction, explaining that while grief is healthy for oncologists, stress and burnout can be counterproductive.[
Several strategies have been recommended to help professionals manage the emotional toll of working with advanced-cancer patients and terminally ill cancer patients, including self-care, teamwork, professional mentorship, reflective writing, mindfulness techniques, and working through the grief process.[
The PDQ cancer information summaries are reviewed regularly and updated as new information becomes available. This section describes the latest changes made to this summary as of the date above.
Care Decisions in the Final Weeks, Days, and Hours of Life
Added text about a retrospective analysis of 121 pediatric and young adult patients in the United Kingdom who died between 2012 and 2016. The analysis showed that 72% of patients who identified a preferred location of death, including a hospital or hospice, achieved this wish, while only 58% of patients who wished to die at home achieved this desire (cited Stilwell et al. as reference 43 and level of evidence III).
This summary is written and maintained by the PDQ Supportive and Palliative Care Editorial Board, which is editorially independent of NCI. The summary reflects an independent review of the literature and does not represent a policy statement of NCI or NIH. More information about summary policies and the role of the PDQ Editorial Boards in maintaining the PDQ summaries can be found on the About This PDQ Summary and PDQ® Cancer Information for Health Professionals pages.
Purpose of This Summary
This PDQ cancer information summary for health professionals provides comprehensive, peer-reviewed, evidence-based information about patient care during the last days to last hours of life. It is intended as a resource to inform and assist clinicians in the care of their patients. It does not provide formal guidelines or recommendations for making health care decisions.
Reviewers and Updates
This summary is reviewed regularly and updated as necessary by the PDQ Supportive and Palliative Care Editorial Board, which is editorially independent of the National Cancer Institute (NCI). The summary reflects an independent review of the literature and does not represent a policy statement of NCI or the National Institutes of Health (NIH).
Board members review recently published articles each month to determine whether an article should:
Changes to the summaries are made through a consensus process in which Board members evaluate the strength of the evidence in the published articles and determine how the article should be included in the summary.
The lead reviewers for Last Days of Life are:
Any comments or questions about the summary content should be submitted to Cancer.gov through the NCI website's Email Us. Do not contact the individual Board Members with questions or comments about the summaries. Board members will not respond to individual inquiries.
Levels of Evidence
Some of the reference citations in this summary are accompanied by a level-of-evidence designation. These designations are intended to help readers assess the strength of the evidence supporting the use of specific interventions or approaches. The PDQ Supportive and Palliative Care Editorial Board uses a formal evidence ranking system in developing its level-of-evidence designations.
Permission to Use This Summary
PDQ is a registered trademark. Although the content of PDQ documents can be used freely as text, it cannot be identified as an NCI PDQ cancer information summary unless it is presented in its entirety and is regularly updated. However, an author would be permitted to write a sentence such as "NCI's PDQ cancer information summary about breast cancer prevention states the risks succinctly: [include excerpt from the summary]."
The preferred citation for this PDQ summary is:
PDQ® Supportive and Palliative Care Editorial Board. PDQ Last Days of Life. Bethesda, MD: National Cancer Institute. Updated <MM/DD/YYYY>. Available at: https://www.cancer.gov/about-cancer/advanced-cancer/caregivers/planning/last-days-hp-pdq. Accessed <MM/DD/YYYY>. [PMID: 26389307]
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Last Revised: 2023-04-14
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