Anticipating the End of Life
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. Certain symptoms such as anorexia or delirium indicate that the patient is approaching the last weeks or months of life.
Another strategy is to follow a patient’s functional status over time and use changes to determine when to focus more on palliation and less on disease treatment. For example, one group of investigators  retrospectively analyzed nearly 71,000 Palliative Performance Scale (PPS) scores obtained from a cohort of 11,374 adult outpatients with cancer who were assessed by physicians or nurses at the time of clinic visits. The PPS is an 11-point scale describing a patient’s level of ambulation, level of activity, evidence of disease, ability to perform self-care, nutritional intake, and level of consciousness.
The investigators assigned patients to one of four states:
- Stable (PPS score, 70–100).
- Transitional (PPS score, 40–60).
- EOL (PPS score, 10–30).
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.
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. In the final days of life, patients often experience progressive decline in their neurocognitive, cardiovascular, respiratory, gastrointestinal, genitourinary, and muscular function, which is characteristic of the dying process. A number of highly specific clinical signs can be used to help clinicians establish the diagnosis of impending death (i.e., death within days).[5,6]
Impending death is a diagnostic issue rather than a prognostic phenomenon because it is an irreversible physiologic 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 hospital discharge, discontinuation of prescription medications, artificial nutrition, use of life support measures, and enrollment on clinical care pathways.[7,8] Because clinicians often overestimate survival,[9,10] they often hesitate to diagnose impending death without adequate supporting evidence.
One study examined five signs in cancer patients, beginning when they were 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. Among the ten target physical signs, there were three early signs and seven late signs. The early signs had high frequency, occurred more than 1 week before death, and had moderate predictive value that a patient would die in 3 days. Early signs included the following:
- Decreased level of consciousness (Richmond Agitation Sedation Scale score of –2 or lower).
- Decreased performance status (Palliative Performance Scale score ≤20%).
- Dysphagia of liquids.
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:
- Pulselessness on the radial artery.
- Respiration with mandibular movement.
- Decreased urine output.
- Cheyne-Stokes breathing.
- Death rattle.
- Apnea periods.
- Peripheral cyanosis.
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. Because of low sensitivity, the absence of these signs cannot rule out impending death.
Several other late signs that have been found to be useful for the diagnosis of impending death include the following:
- Nonreactive pupils (positive LR, 16.7; 95% confidence interval [CI], 14.9–18.6).
- Decreased response to verbal stimuli (positive LR, 8.3; 95% CI, 7.7–9).
- Decreased response to visual stimuli (positive LR, 6.7; 95% CI, 6.3–7.1).
- Inability to close eyelids (positive LR, 13.6; 95% CI, 11.7–15.5).
- Drooping of the nasolabial fold (positive LR, 8.3; 95% CI, 7.7–8.9).
- Hyperextension of the neck (positive LR, 7.3; 95% CI, 6.7–8).
- Grunting of vocal cords (positive LR, 11.8; 95% CI, 10.3–13.4).
- Upper gastrointestinal bleeding (positive LR, 10.3; 95% CI, 9.5–11.1).
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 good-bye.” 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 (refer to the Symptoms During the Final Months, Weeks, and Days of Life section of this summary), preparing family and friends for a patient’s death is critical. Preparations include the following:
- Acknowledging the symptoms that are likely to occur.
- Articulating a plan to respond to the symptoms.
- Eliciting fears or concerns of family members.
- Assuring that respectfully allowing life to end is appropriate at this point in the patient’s life.
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. (Refer to the Death Rattle section in the Symptoms During the Final Months, Weeks, and Days of Life section of this summary for more information.) 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. (Refer to the PDQ summary on Spirituality in Cancer Care for more information.)
- Lorenz K, Lynn J, Dy S, et al.: Cancer care quality measures: symptoms and end-of-life care. Evid Rep Technol Assess (Full Rep) (137): 1-77, 2006. [PUBMED Abstract]
- Maltoni M, Caraceni A, Brunelli C, et al.: Prognostic factors in advanced cancer patients: evidence-based clinical recommendations--a study by the Steering Committee of the European Association for Palliative Care. J Clin Oncol 23 (25): 6240-8, 2005. [PUBMED Abstract]
- Sutradhar R, Seow H, Earle C, et al.: Modeling the longitudinal transitions of performance status in cancer outpatients: time to discuss palliative care. J Pain Symptom Manage 45 (4): 726-34, 2013. [PUBMED Abstract]
- Hui D, Nooruddin Z, Didwaniya N, et al.: Concepts and definitions for "actively dying," "end of life," "terminally ill," "terminal care," and "transition of care": a systematic review. J Pain Symptom Manage 47 (1): 77-89, 2014. [PUBMED Abstract]
- Domeisen Benedetti F, Ostgathe C, Clark J, et al.: International palliative care experts' view on phenomena indicating the last hours and days of life. Support Care Cancer 21 (6): 1509-17, 2013. [PUBMED Abstract]
- Hui D, dos Santos R, Chisholm G, et al.: Clinical signs of impending death in cancer patients. Oncologist 19 (6): 681-7, 2014. [PUBMED Abstract]
- Ellershaw J, Ward C: Care of the dying patient: the last hours or days of life. BMJ 326 (7379): 30-4, 2003. [PUBMED Abstract]
- Hui D, Con A, Christie G, et al.: Goals of care and end-of-life decision making for hospitalized patients at a canadian tertiary care cancer center. J Pain Symptom Manage 38 (6): 871-81, 2009. [PUBMED Abstract]
- Lamont EB, Christakis NA: Prognostic disclosure to patients with cancer near the end of life. Ann Intern Med 134 (12): 1096-105, 2001. [PUBMED Abstract]
- Hui D, Kilgore K, Nguyen L, et al.: The accuracy of probabilistic versus temporal clinician prediction of survival for patients with advanced cancer: a preliminary report. Oncologist 16 (11): 1642-8, 2011. [PUBMED Abstract]
- Morita T, Ichiki T, Tsunoda J, et al.: A prospective study on the dying process in terminally ill cancer patients. Am J Hosp Palliat Care 15 (4): 217-22, 1998 Jul-Aug. [PUBMED Abstract]
- Hui D, Dos Santos R, Chisholm G, et al.: Bedside clinical signs associated with impending death in patients with advanced cancer: Preliminary findings of a prospective, longitudinal cohort study. Cancer : , 2015. [PUBMED Abstract]
- Shimizu Y, Miyashita M, Morita T, et al.: Care strategy for death rattle in terminally ill cancer patients and their family members: recommendations from a cross-sectional nationwide survey of bereaved family members' perceptions. J Pain Symptom Manage 48 (1): 2-12, 2014. [PUBMED Abstract]