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Education in Palliative and End-of-life Care - Oncology
Last Hours of
Emanuel LL, Ferris FD, von Gunten CF, Von Roenn J.
EPEC-O: Education in Palliative and End-of-life Care for Oncology.
© The EPEC Project,™ Chicago, IL, 2005
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The EPEC Project™ was created with the support of the American Medical Association and the Robert Wood Johnson Foundation. The EPEC-O curriculum is produced by The EPEC Project™ with major funding provided by the National Cancer Institute, with supplemental funding provided by the Lance Armstrong Foundation. The American Society of Clinical Oncology partners with the EPEC-O Project in dissemination of the EPEC-O Curriculum. Acknowledgment and appreciation are extended to Northwestern University’s Feinberg School of Medicine, which houses The EPEC Project.
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Contact EPEC by E-mail at firstname.lastname@example.org, or The EPEC Project™ 750 N. Lake Shore Drive, Suite 601 Chicago, IL 60611 USA Phone: +1 (312) 503-EPEC (3732) Fax: +1 (312) 503-4355 Module 6: Last Hours of Living Page M6-2 © EPEC Project, 2005 Abstract Clinical competence, willingness to educate and calm, and empathic reassurance are critical to helping patients and families in the last hours of living. Management of feeding and hydration, changes in consciousness, delirium, pain, brea thlessness, and secretions are common. Management principles are the same at home or in a health care institution. However, death in an institution requires accommodations to assure privacy, cultural observances, and communication that may not be customary. In anticipation of the event, inform the family and other professionals about what to do and what to expect. Care does not end until the family has been supported with their grief reactions and those with complicated grief have been helped to get care.
Key words Bereavement, breathing changes, complicated grief, coroner, decreased appetite, de- creased mobility, decreased perfusion, decreased thirst, delirium, expectations, eyes, fatigue, imminent death, moving the body, neurological dysfunction, normal grief, pain, rigor mortis, sphincter control, swallowing, tasks of caring Objectives After reviewing this module, oncologists and other members of the cancer care team will
be able to:
• Assist families to prepare for the last hours of life.
• Assess and manage the pathophysiologic changes of dying.
• Pronounce a death and notify the family.
Clinical case on trigger tape A.F. is a 79-year-old woman with metastatic breast cancer who is in her own home, cared for by her daughter with the help of the home hospice program. She develops aspiration pneumonia, and it is treated with oral antibiotics. Advance care planning indicates she does not want to go to the hospital under any circumstances, and oral antibiotics were an intermediate level of care. The patient and daughter agree that, if she gets better, she may have some quality of time left. But, if she doesn’t, A.F. says she is ready to go. Her physician makes a joint home visit with the home hospice nurse in order to assess changes in mental status and because it sounds like her daughter panicked and considered calling 911.
Module 6: Last Hours of Living Page M6-3 © EPEC Project, 2005 Introduction Virtually all oncologists participate in the care of dying patients and their families during their careers. Of all patients who die, only a few (10%) will die suddenly and unexpectedly. Most (90%) will die after a long period of illness with gradual deterioration until an active dying phase at the end. 1 Care provided during those last hours and days can have profound effects, not just on the patient, but on all who participate. At the very end of life, there is no second chance to get it right.
We will first summarize the physiological changes that occur as patients are dying and approaches to the management of associated symptoms. Then, we will discuss care at the time of death. Loss, grief, and bereavement are covered in EPEC-O Module 4: Loss, Grief, and Bereavement.
Most oncologists have little or no formal training to manage the dying process or death.
Most have neither watched someone die nor provided direct care during the last hours of life.
Families usually have even less experience or knowledge. Based on media dramatization and vivid imaginations, most people have developed an exaggerated sense of what dying and death are like. However, with appropriate management, it is possible to provide smooth passage and comfort for the patient and all those who watch.
Preparing for the last hours of life During the last hours of their lives, all patients require skilled care around the clock. This can be provided in any setting as long as the professional, family, and volunteer caregivers are appropriately prepared and supported throughout the process. The environment must allow family and friends access to their loved one around the clock without disturbing others and should be conducive to privacy and intimacy. Medications, equipment, and supplies need to be available in anticipation of problems, whether the patient is at home or in a health care institution. As the patient’s condition and the family’s ability to cope can change frequently, both must be reassessed regularly and the plan of care modified as needed. As changes can occur suddenly and unexpectedly, caregivers must be able to respond quickly. This is particularly important when the patient is at home, if unnecessary readmission is to be avoided.
If the last hours of a person’s life are to be as rewarding as possible, advance preparation and education of professional, family, and volunteer caregivers are essential, whether the patient is at home, in an acute care or skilled nursing facility, a hospice or palliative care unit, prison, etc. Everyone who participates must be aware of the patient’s health status, his or her goals for care and the parents’ goals, if the patient is a child, advance directives, and proxy for decision making. They should also be knowledgeable about the potential time course, signs and symptoms of the dying process, and their potential management. Help families to understand that what they see may be very different from the patient’s experience. If family members and caregivers feel confident, the experience Module 6: Last Hours of Living Page M6-4 © EPEC Project, 2005 can provide a sense of final gift giving. For parents of a dying child, confidence can leave a sense of good parenting. If unprepared and unsupported, they may spend excessive energy worrying how to handle the next event. If things do not go as hoped for, family members may live with frustration, worry, fear, or guilt that they did something wrong or caused the patient’s death.
Establish in advance whether potential caregivers, including professionals who work in institutions, are skilled in caring for patients in the last hours of life. Do not assume that anyone, even a professional, knows how to perform basic tasks. Those who are inexperienced in this particular area will need specific training including, for instance, knowledge about body fluid precautions. Written materials can provide additional support to caregivers when experts are not present.
Although we often sense that death will either come quickly over minutes or be protracted over days to weeks, it is not possible to predict when death will occur with precision. Some patients may appear to wait for someone to visit, or for an important event such as a birthday or a special holiday, and then die soon afterward. Others experience unexplained improvements and live longer than expected. A few seem to ‘decide to die‘ and do so very quickly, sometimes within minutes. While we may give families or professional caregivers a general idea of how long the patient might live, always advise them about the inherent unpredictability of the moment of death.
Physiologic changes and symptom management There are a variety of physiological changes that occur in the last hours and days of life, and when the patient is actually dying. Each can be alarming if it is not understood. The most common issues are summarized here. To effectively manage each syndrome or symptom, oncologists need to have an understanding of its cause, underlying pathophysiology, and the appropriate pharmacology to use.
Fatigue/weakness Weakness and fatigue usually increase as the patient approaches the time of death. It is likely that the patient will not be able to move around in the bed or raise his or her head. 2 As this is irreversible, weakness and fatigue need not be resisted and most treatment to alleviate it can be discontinued. Joints may become uncomfortable if they are not moved. 3 Continuous pressure on the same area of skin, particularly over bony prominences, will increase the risk of skin ischemia and pain. 4 As the patient approaches death, providing adequate cushioning on the bed will lessen the need for uncomfortable turning.
Module 6: Last Hours of Living Page M6-6 © EPEC Project, 2005 Cutaneous ischemia At the end of life, fatigue need not be resisted and most treatment to alleviate it can be discontinued (see EPEC-O Module 3: Symptoms). Patients who are too fatigued to move and have joint position fatigue may require passive movement of their joints every 1 to 2 hours. To minimize the risk of pressure ulcer formation, turn the patient from side to side every 1 to 1.5 hours and protect areas of bony prominence with hydrocolloid dressings and special supports. Do not use ‘donuts’ as they paradoxically worsen areas of breakdown. A draw sheet can assist caregivers to turn the patient and minimize pain and shearing forces to the skin. If turning is painful, consider a pressure-reducing surface (e.g., air mattress or airbed). As the patient approaches death, the need for turning lessens as the risk of skin breakdown becomes less important.
Intermittent massage before and after turning, particularly to areas of contact, can both be comforting and reduce the risk of skin breakdown by improving circulation and shifting edema. Avoid massaging areas of erythema or actual skin breakdown.
Decreasing appetite/food intake, wasting Most patients lose their appetite. 5 Unfortunately, families and professional caregivers may interpret cessation of eating as ‘giving in’ or ‘starving to death.’ Yet, studies demonstrate that parenteral or enteral feeding of patients near death neither improves symptom control nor lengthens life. 6, 7, 8, 9, 10 Anorexia may be helpful as the resulting ketosis can lead to a sense of well being and diminish discomfort. Help direct families and caregivers to find alternate ways to express their need to provide appropriate physical care and emotional support to the patient.
Physicians can help families understand that loss of appetite is normal at this stage.
Remind them that the patient is not hungry, that food either is not appealing or may be nauseating, that the patient would likely eat if he or she could, and that clenching of teeth may be the only way for the patient to express desires.
Whatever the degree of acceptance of these facts, it is important for physicians to help families and caregivers realize that food pushed upon the unwilling patient may cause problems such as aspiration and increase tensions (see EPEC-O Module 11: Withdrawing Nutrition, Hydration). Above all, help them to find alternate ways to provide appropriate physical care and emotional support to the patient so that they can continue to participate and feel valued during the dying process.
Decreasing fluid intake, dehydration Most patients stop drinking. 11 This may heighten onlookers’ distress as they worry that the dehydrated patient will suffer, particularly if he or she becomes thirsty. Most experts feel that dehydration in the last hours of living does not cause distress and may stimulate endorphin release that promotes the patient’s sense of well-being. 12, 13, 14 Low blood pressure or weak pulse is part of the dying process and not an indication of dehydration.
Module 6: Last Hours of Living Page M6-7 © EPEC Project, 2005 Patients who are not able to be upright do not get light-headed or dizzy. Patients with peripheral edema or ascites have excess body water and salt and are not dehydrated.
Decreased fluid intake usually heightens onlookers’ distress as they worry that the dehydrated patient will suffer, particularly if he or she becomes thirsty. As with feeding, families and professional caregivers will need support to understand that this is an expected event. It may help families to understand that most experts in the field feel that dehydration in the last hours of living does not cause distress and may stimulate endorphin release that adds to the patient’s sense of well-being. Low blood pressure or weak pulse is part of the dying process and not an indication of dehydration. Patients who are not able to move off the bed do not get lightheaded or dizzy. Patients with peripheral edema or ascites have excess body water and salt and are not dehydrated.
Parenteral fluids, either intravenously or subcutaneously using hypodermoclysis, are sometimes considered, particularly when the goal is to reverse delirium. 15 However, parenteral fluids may have adverse effects that are not commonly considered. Intravenous lines can be cumbersome and difficult to maintain. Changing the site of the angiocatheter can be uncomfortable, particularly when the patient is cachectic or has no discernible veins. Excess parenteral fluids can lead to fluid overload with consequent peripheral or pulmonary edema, worsened breathlessness, cough, and orotracheobronchial secretions, particularly if there is significant hypoalbuminemia.