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Home Health Care Management Practice OnlineFirst, published on February 21, 2008 as doi:10.1177/1084822307311839

Caring for the Patient and the Family in the Last Hours of Life Karen A. Kehl, PhD, RN, ACHPN

addition to recognizing these signs and symptoms, a basic knowledge of interventions to manage the symptoms is needed to care for the patient and to assist the family in preparing for what to do in the final hours. Although it is impossible to accurately predict all of the potential signs and symptoms that may appear in the final hours for each individual patient, health care providers and families should be prepared for the most common signs and symptoms. These include pain, dyspnea, and delirium or restlessness (Ventafridda, Ripamonti, De Conno, Tamburini, & Cassileth, 1990). In addition, the health care professional may be able to anticipate possible signs and symptoms through knowledge of the pathophysiology of the dying person’s disease, and other medical problems experienced by the patient. This article will review the most common symptoms and appropriate management. An overview of other symptoms frequently seen during the final hours of life will be provided based on body systems.

Recognition of the signs and symptoms that are common in the final hours of life and a basic understanding of how to manage these signs and symptoms are important to helping the patient and family experience a good death in the home setting. The most common signs and symptoms, including pain, dyspnea, and terminal restlessness or delirium, and their management are discussed. Also addressed are other signs and symptoms, such as cardiovascular signs and symptoms including cold extremities, mottling, and changes in vital signs; respiratory signs and symptoms such as changes in breathing pattern, noisy breathing, and mandibular breathing; and neurological signs and symptoms such as disorientation, sensory changes, and semicomatose state. Changes in metabolism such as fatigue, surge of energy, and increased temperature are presented, along with decreased intake, excretion, and communication changes.

SYMPTOMS AND SYMPTOM MANAGEMENT

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aring for patients who are nearing the end of their life and their families is a privilege and a challenge. When caring for these patients and families in the home, often the nurse notices a shift when less of the nursing visit is spent on providing direct care for the patient and more is spent on preparing the family for the last hours and teaching them how to care for their loved one. To be able to assist the patient and the family at this sensitive and stressful time, it is important to recognize the signs and symptoms that frequently occur in the last hours of life. In

Pain Pain occurs in up to 96% of patients regardless of diagnosis (Solano, Gomes, & Higginson, 2006). Many people fear that pain will suddenly increase just before a death. Although there is no empiric evidence of this increase in pain, managing pain in the final hours can

Key Words: comfort care

terminal care; dying process; family coping;

Home Health Care Management & Practice / Month XXXX / Volume XX, Number X, xx-xx DOI: 10.1177/1084822303311839 © 2008 Sage Publications

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Copyright 2008 by SAGE Publications.

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HOME HEALTH CARE MANAGEMENT & PRACTICE / Month XXXX

present different challenges than managing pain earlier in the disease process. The dying person may not be able to verbally relate pain and other signs must be assessed. Families may be concerned that every moan or sound and every change in expression are signs of pain. There are a number of pain assessment tools that can be used with nonverbal patients (Herr, Bjoro, & Decker, 2006). Pain can sometimes be recognized by frowning or grimacing, facial tension, and guarding of an area. Moaning is not a reliable indicator of pain because some people moan in their final hours as a means of vocalization, with exhalation, or as part of terminal restlessness. Pain may also be exhibited by increased heart rate. When in doubt, try an increased dose of pain medication and see if the behavior diminishes. Managing pain in the final hours is complicated by changes in the patient’s condition which affect the method of administration, absorption, and metabolization of opioid medications. People frequently lose the ability to swallow in the last hours and days of life. If the patient has had their pain managed with long acting oral opioids, it may be necessary to change to a buccal, sublingual, rectal, subcutaneous, or intravenous method of administration. It is important to remember that with rectal administration, some patients require a higher dose to achieve the same degree of pain management (Lugo & Kern, 2002), whereas others require a lower dose because of excessive sedation (Pasero & McCaffery, 1999). Another issue affecting dosing is that as hepatic and renal function slow, opioid metabolites are not cleared from the system as quickly. Routine doses or continuous infusion of opioids may need to be discontinued if urine output stops, and breakthrough dosing used instead for pain management (Emanuel, Ferris, von Gunten, & Von Roenn, 2006). Use of transdermal fentanyl patches in the final hours of life may also be problematic, although some research shows good pain management with transdermal fentanyl in the final hours (Ellershaw, Kinder, Aldridge, Allison, & Smith, 2002). As the circulation changes, the fentanyl may not be absorbed at the same rate, causing the patient to receive less or more medication than needed. Changes in the skin such as diaphoresis can make it a challenge to keep the patch on in a manner that allows proper absorption of the fentanyl. If the patches are not staying on or it seems that it just is not working properly, it is best to supplement the fentanyl with an opioid or change to another method of pain management.

Dyspnea Dyspnea is another symptom that occurs in many dying persons. The incidence of dyspnea is up to 70% in the last weeks of life (Reuben & Mor, 1986). More than 26% of the families of home hospice patients in a recent study believed that the dying person did not receive enough help with dyspnea (Teno et al., 2004). Treatment of dyspnea includes placing the patient in an upright position, administration of oxygen if the patient is hypoxic, and placing a fan in front of the patient (Campbell, 2004). Opioids can alleviate respiratory distress and are the primary pharmacological treatment for terminal dyspnea. When patients have anxiety related to the dyspnea, addition of a benzodiazepine in the medication regime may be helpful, although benzodiazepines by themselves have not been found to be an effective treatment for dyspnea (Thomas & von Gunten, 2003).

Terminal Restlessness Terminal restlessness or terminal delirium is a cluster of symptoms that occurs in up to 88% of dying persons (Fainsinger, Miller, Bruera, Hanson, & Maceachern, 1991; Lawlor et al., 2000; Lichter & Hunt, 1990; Roth & Breitbart, 1996). The frequent nonpurposeful movement, fluctuating levels of consciousness, inability to concentrate and/or relax, and disturbances in sleep-rest patterns can identify terminal restlessness. Terminal delirium includes a rapid change in cognition and disturbance of consciousness (Macleod, 2006). Both conditions are challenging and frightening to family members and are often the reasons for inpatient admission during the final days. Treatment of terminal restless first requires a thorough assessment to determine if there are other reasons for the restlessness such as pain, nausea, bladder distention, constipation, dehydration, or nicotine withdrawal. If any of these are present they should be treated promptly. If the restlessness persists, treatment with haloperidol, chlorpromazine, or a benzodiazepine may be helpful (Kehl, 2004). It is usually most effective to give these medications by a nonoral route because of difficulties with administration and the desire for a more rapid onset of action.

Other Signs and Symptoms Home care nurses and other health care professionals can prepare families for other symptoms that are common in the final hours. By analysis of the patient’s terminal diagnosis, other medical conditions, and current

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signs and symptoms, the probability of the patient experiencing some the following signs and symptoms can be estimated. It is important not to overload families with too much information on symptoms they are not likely to see, but to try to adequately prepare them for what they are most likely going to see. Cardiovascular signs and symptoms. The cardiovascular signs and symptoms are a result of decreased blood pressure, which is often a result of dehydration. Tachycardia is the first response to the decrease in blood pressure and the heart rate may double. As the patient becomes hypoxic and neurological function is impaired, the heart rate decreases. As death nears, heart sounds become faint and it can be difficult to assess the blood pressure. There is no management needed in response to these changes in blood pressure or heart rate. Vital signs do not need be taken repeatedly unless requested by the family. Families sometimes want to know the blood pressure and heart rate and may ask if the nurse can tell how close death is based on the vital signs. It is best not to predict the time of death based on these signs but to let families know that the changes indicate the time of death is getting nearer. As the peripheral circulation slows, the extremities may become very cold, even if the central body temperature is elevated. As blood pools in the dependent areas of the body, mottling may be noted. Mottling usually starts with the lower extremities and progresses upward, although it is sometimes noted first on areas of low circulation such as the ears. With both mottling and cold extremities, it is important to reassure the family that these changes are a normal part of the dying process. Usually the patient does not feel cold, even if they are cold to the touch. Light blankets may be used, but electric blankets or heating pads should be avoided. Respiratory signs and symptoms. In addition to dyspnea, as patients near death there are changes in the breathing pattern that are often disturbing to family members. Common breathing patterns include shallow breaths, increased or decreased respiratory rate, panting, apnea, and Cheyne-Stokes breathing. Oxygen is not recommended at this time because it does not change the breathing pattern but may prolong the dying process (Emanuel et al., 2006). It is important to reassure families that these are normal breathing patterns near the end of life and they do not indicate that the person is suffering.

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Audible secretions in the oropharynx and tracheobronchial system often become loud and disturbing to family members. Again, it is important to reassure families that these noises do not indicate that their loved one is in distress. Repositioning the patient with the head of the bed elevated or on their side may alleviate the noisy breathing. Anticholinergic agents such as scopolamine (1 to 3 transdermal patches every 72 hours or 0.2 to 0.4 mg subcutaneously every 4 hours), glycopyrrolate (0.2 mg subcutaneously every 4 to 6 hours) or atropine drops administered orally may be helpful in decreasing the secretions (Emanuel et al., 2006). Suctioning is not recommended because most secretions are out of reach and the trauma from suctioning may increase secretions, cause the patient discomfort, and frighten family members. Another respiratory change is mandibular or reflexive breathing. This pattern of breathing includes gasping breaths and has been called “fish out of water” breathing. It is also referred to as “agonal breathing,” a term that should be avoided with families because they often interpret it as “agony.” Mandibular breathing is often easily recognized by those who have attended other deaths, and is characterized by slow, sighing respirations. In a patient who does not wish resuscitation this is often the last breathing pattern before terminal apnea. It is considered an irreversible sign of neurological changes. Families should be aware that this is a sign that the patient is nearing death, but be cautious not to predict the time of death based on this sign. Mandibular breathing may last for a few breaths or may last hours to days depending on the condition of the patient. Neurological signs and symptoms. Neurological signs and symptoms include terminal restlessness or delirium, disorientation, sensory changes, and a semicomatose state. Disorientation is a common change that may occur hours to days before the death. The dying person may have difficulty remembering where they are or whom they are with. It is not unusual for the patient to ask to go home when they are already at home in their own bed. This disorientation is a sign of the permanent neurological changes leading to death. It may be because of hypoxia or metabolic changes. Families should be reassured that this is a normal occurrence when approaching death and should be encouraged to gently reorient the patient as it is needed. Sensory changes include increased sensitivity to light, decreased visual acuity, and decreased sensation of touch or hypersensitivity to touch. It is assumed that the dying person continues to hear even when they cannot respond.

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To accommodate these sensory changes, the environment should be controlled. Soft, indirect lighting is often useful. Family members may need to get closer to the patient to be identified and should identify themselves when they enter the room or when they speak. Although decreased sensation of touch is usually more disturbing to the family than to the patient, hypersensitivity to touch requires active management. It may be manifested as restlessness when sheets or blankets are tucked in or when the patient feels confined, or it may include hyperalgesia. If every touch causes the patient pain, medications should be reassessed. Opioid toxicity may cause hyperalgesia, which can be reversed with a reduction in the opioid dose or a change in medication (Wilson & Reisfield, 2003). Many patients enter a semicomatose state prior to death. In this condition, the patient has little or no spontaneous motor movement, speech, or response to voice. The patient is lethargic and may be disoriented, but can be aroused, usually by noxious stimuli. The eyes may be closed or half open. When touched, the patient usually does not respond, but they may groan or make other noises when repositioned, especially if it is painful. It is not known whether the patient is aware of who is present, whether they are being touched, or of any conversation in the room. Families often want to know what the dying person is aware of and how they should respond. It is appropriate to tell families that we do not know how much of their surroundings the patient is aware of, but to act as if their loved one was aware but not able to respond. Changes in metabolism. In the last hours, changes in metabolism that occur include fatigue, surge of energy, and increased temperature. Fatigue is often present for days to weeks prior to the death and may increase as death nears. In the final hours, the fatigue may become so great that the patient cannot move in bed or lift the patient’s head off of the pillow. This is a normal change that families should be prepared for. Even in patients who have considerable fatigue, the patient may suddenly regain the energy to spend time with family members, have a favorite meal, or engage in a favorite activity. Families often see this as a sign that their loved one is recovering their strength. Usually this surge of energy lasts only a few hours to a day. The patient then declines rapidly and often dies hours to a few days later. Families are often surprised and upset that they were not prepared for the death because their family member was doing so well.

Encourage families to cherish every minute while their loved one is awake and aware, warning them of the possibility of rapid decline, so that if the patient’s condition changes, the family will know they have taken full advantage of the time they had together. An increase in core body temperature frequently occurs in the last hours of life. This is usually because of a combination of dehydration and changes in the hypothalamus as the neurological system shuts down. Infection may also increase the temperature. Body temperatures may increase to 105° F or higher. Extremities may remain cold, even when the body temperature is very high. Often the patient is in a semicomatose state and may not appear to be distressed about the increased temperature. Acetaminophen suppositories are sometimes effective in reducing the fever, but may lead to diaphoresis, which may be more uncomfortable for the patient. A frank discussion with the family about the benefits and the costs of giving acetaminophen, against the goal of patient comfort should guide the decision about giving the medication. Cool damp washcloths across the forehead, and wiping the patient with cool cloths gives the family a means to show their care for the patient and may provide as much comfort to the patient as medication. Changes in intake. As death nears, even if a person has been eating and drinking, they often lose the desire to take in food or fluids. As their condition progresses, many lose the ability to swallow. In most cases, providing nutrition by feeding tube or hydration by an intravenous infusion is not helpful and may cause more problematic symptoms such as edema, ascites, and respiratory distress (Lanuke, Fainsinger, & DeMoissac, 2004). It is important to remind families that it is the disease that will cause the death of the patient, and not withholding food or fluid. In most cases, if the person no longer wishes to eat or drink, it is because their digestive system is slowing down and the energy in their body is being used for more vital functions such as breathing. As the person stops taking in fluids, good oral care can prevent and alleviate the sensation of thirst, which is associated less with the degree of hydration and more with mouth breathing (Morita, Tei, Tsunoda, Inoue, & Chihara, 2001). If the patient has increased confusion after ceasing fluid intake or in cases of opioid toxicity, a trial of intravenous hydration may be desired to see if it relieves distressing symptoms (Lawlor, 2002). Families may also ask about a trial of a feeding tube.

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Families often have high, unrealistic expectations of the benefits of tube feeding that do not correlate with the clinical experience (Carey et al., 2006), especially for the patient in the last hours of life. Because these topics are highly emotional and often have spiritual implications, it is important to respond to family questions about nutrition and hydration in an open and honest manner. It may be helpful to consult with other team members such as the medical director, chaplain, nutritionist, or the ethics team if this is an especially sensitive topic for a particular family. Changes in excretion. As a result of decreased fluid intake and the shutting down of the renal system, there is often a decrease in the volume of urine and an increased urine concentration in the final hours. Urine may become very dark and tea colored. Families should be prepared for these normal changes and it should be explained that no treatment is necessary. As control of the voluntary muscles relaxes, incontinence of bowel and bladder may occur. If the patient is conscious, this may be embarrassing to them. As the nurse notes other changes that indicate that death is nearing, it is helpful to pad the bed with a waterproof pad, making sure that no plastic touches the patient’s skin. Family members should be taught how to change the pad while the patient remains in the bed. If the patient or family desires, or if the patient has urine retention, a urinary catheter may be inserted. A catheter often makes care of the bed-bound patient easier, and some patients are comforted knowing that they will not wet the bed. Changes in communication. There are a number of communication changes that take place in the final hours to days of life. Some patients withdraw socially and may only want a few friends or family members present. Family members who are not part of this inner circle often feel left out or unimportant and family members who the patient wants nearby may feel burdened and tied down. Supporting both sets of family members includes reassuring those who are not in the inner circle that their contribution to the dying person’s life is important, but that their role now is to honor the person’s wishes and support those who are at the bedside. For those who the patient wants close, help them divide chores so they are free to be with the patient as much as possible and give them permission to take time away from the bedside to sleep, shower, or rest. It may be helpful for family members to realize

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that withdrawal is a part of the grieving process on the part of the dying person and not a personal rejection (Periyakoil & Hallenbeck, 2002). Another change is that communication often progresses from stories to paragraphs, to sentences, to single words, and finally to moans or other nonverbal communication. If families are aware of this progression, it gives them the opportunity to discuss patient wishes while the patient is still able to respond. Most patients follow this communication pattern, although the time span may vary from minutes to weeks. Although patients are still speaking, they may use symbolic language or metaphors to describe their experiences or communicate with their loved ones. Families who are listening for symbolic language can often understand cryptic statements made by the dying person. Families who have an interest in learning more about symbolic language often benefit from reading Final Gifts (Callanan & Kelley, 1992). Dying persons may also relate visions of things or people, which cannot be seen by others. Families often become concerned that their loved one is hallucinating. Usually in hospice, if these visions or visits do not disturb the patient, they are not treated. If the patient finds the visions upsetting, pharmacological treatment with haloperiodol is indicated.

CONCLUSION Recognizing and managing the signs and symptoms of approaching death is one of the greatest challenges and most rewarding aspects of caring for patients who are dying and their families. The role of the health care professional is primarily to guide the family through this experience so that they are confident of their loved one’s comfort and their ability to care for them. Dame Cicely Saunders (1999) has said, “How people die remains in the memories of those who live on.” Providing good management of the symptoms in the final hours and helpful explanations and guidance to families increases the possibility that their memories will be of a well managed, peaceful death. REFERENCES Callanan, C., & Kelley, P. (1992). Final gifts. New York: Poseidon. Campbell, M. L. (2004). Terminal dyspnea and respiratory distress. Critical Care Clinics, 20(3), 403-417. Carey, T. S., Hanson, L., Garrett, J. M., Lewis, C., Phifer, N., Cox, C. E., et al. (2006). Expectations and outcomes of gastric feeding tubes. American Journal of Medicine, 119(6), 527.e511-527.e526.

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Ellershaw, J. E., Kinder, C., Aldridge, J., Allison, M., & Smith, J. C. (2002). Care of the dying: Is pain control compromised or enhanced by continuation of the fentanyl transdermal patch in the dying phase? Journal of Pain and Symptom Management, 24(4), 398-403. Emanuel, L., Ferris, F. D., von Gunten, C. F., & Von Roenn, J. H. (2006, August 28, 2006). The last hours of living: Practical advice for clinicians. Retrieved September 15, 2006, from http://www.medscape.com/viewprogram/5808_pnt Fainsinger, R., Miller, M. J., Bruera, E., Hanson, J., & Maceachern, T. (1991). Symptom control during the last week of life on a palliative care unit. Journal of Palliative Care, 7(1), 5-11. Herr, K., Bjoro, K., & Decker, S. (2006). Tools for assessment of pain in nonverbal older adults with dementia: A state-of-the-science review. Journal of Pain and Symptom Management, 31(2), 170-192. Kehl, K. A. (2004). Treatment of terminal restlessness: A review of the evidence. Journal of Pain & Palliative Care Pharmacotherapy, 18(1), 5-30. Lanuke, K., Fainsinger, R. L., & DeMoissac, D. (2004). Hydration management at the end of life. Journal Palliative Medicine, 7(2), 257-263. Lawlor, P. G. (2002). Delirium and dehydration: Some fluid for thought. Supportive Care in Cancer, 10, 445-454. Lawlor, P. G., Gagnon, B., Mancini, I. L., Pereira, J. L., Hanson, J., SuarezAlmazor, M. E., et al. (2000). Occurrence, causes, and outcome of delirium in patients with advanced cancer: A prospective study. Archives of Internal Medicine, 160(6), 786-794. Lichter, I., & Hunt, E. (1990). The last 48 hours of life. Journal of Palliative Care, 6(4), 7-15. Lugo, R. A., & Kern, S. E. (2002). Clinical pharmacokinetics of morphine. Journal Pain Palliative Care Pharmacotherapeutics, 16(4), 5-18. Macleod, A. (2006). The management of terminal delirium. Indian Journal of Palliative Care, 12(1), 22-28. Morita, T., Tei, Y., Tsunoda, J., Inoue, S., & Chihara, S. (2001). Determinants of the sensation of thirst in terminally ill cancer patients. Support Care Cancer, 9(3), 177-186. Pasero, C., & McCaffery, M. (1999). Opioids by the rectal route. American Journal of Nursing, 99(11), 20.

Periyakoil, V. S., & Hallenbeck, J. (2002). Identifying and managing preparatory grief and depression at the end of life. American Family Physician, 65(5), 883-890. Reuben, D. B., & Mor, V. (1986). Dyspnea in terminally ill cancer patients. Chest, 89(2), 234-236. Roth, A. J., & Breitbart, W. (1996). Psychiatric emergencies in terminally ill cancer patients. Hematology–Oncology Clinics of North America, 10(1), 235-259. Saunders, C. (1989). Pain and impending death. In P. D. Wall & R. Melczack (Eds.), Textbook of pain (2nd ed., pp. 624-631). Edinburgh, UK: Churchill Livingstone. Solano, J. P., Gomes, B., & Higginson, I. J. (2006). A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. Journal of Pain and Symptom Management, 31(1), 58-69. Teno, J. M., Clarridge, B. R., Casey, V., Welch, L. C., Wetle, T., Shield, R., et al. (2004). Family perspectives on end-of-life care at the last place of care. Journal of the American Medical Association, 291(1), 88-93. Thomas, J. R., & von Gunten, C. F. (2003). Management of dyspnea. Journal of Supportive Oncology, 1(1), 23-32. Ventafridda, V., Ripamonti, C., De Conno, F., Tamburini, M., & Cassileth, B. R. (1990). Symptom prevalence and control during cancer patients’ last days of life. Journal of Palliative Care, 6(3), 7-11. Wilson, G. R., & Reisfield, G. M. (2003). Morphine hyperalgesia: A case report. American Journal of Hospice and Palliative Care, 20(6), 459-461.

Karen A. Kehl, PhD, RN, ACHPN, has been a hospice nurse for the past 14 years. In addition to experience in clinical practice in hospice and palliative care, she has been a hospice educator and administrator and has taught end-of-life care to undergraduate and graduate students. Her current focus is research on preparing families for death in the home setting.