As death approaches, many patients with chronic illnesses experience uncomfortable signs and symptoms. For those in heart failure, for instance, dyspnea from fluid retention may cause agony. For cancer patients, pain may predominate. Other common end-of-life (EOL) symptoms include agitation and delirium, anxiety, fatigue, weakness, constipation, nausea, and vomiting.
With patients who are at the end of life, palliative care, as with hospice care, means that curative options are discontinued except those that relieve symptoms (such as palliative chemotherapy). Early intervention with palliative care can lead to a better quality of life, improved sleep, less fatigue, and decreased pain—in turn, enhancing the patient’s sense of well-being. In a study of 151 lung cancer patients randomized to receive either standard or palliative care, palliative care enhanced quality of life and extended survival even though patients received less aggressive care.
Yet all too often, palliative care isn’t used until the patient reaches the brink of death. Many patients and healthcare providers aren’t aware palliative care can ease symptoms; they mistakenly assume it’s the same thing as terminal or hospice care. What’s more, not all patients can access palliative-care specialists in early stages of chronic illness. Although palliative care was recognized as a specialty in 2006, specially trained practitioners are still relatively few. (See How much time does the patient have left? by clicking the PDF above)
From cure to comfort
When a patient nears death, the goal of care changes from cure to comfort, and relieving symptoms is one of the most valuable contributions healthcare professionals can offer. Palliative-care practitioners also can help families make difficult decisions on such issues as the patient’s code status or whether to use a feeding tube.
Managing EOL symptoms can be highly complex. Many patients have multiple comorbidities. Comorbid diseases and metastatic cancer can have multifaceted presentations; these need to be simplified and each item addressed. Some EOL symptoms may become refractory; examples include fluid retention in cardiac patients, which can worsen respiratory distress, as well as pain and anorexia in cancer patients. These symptoms call for more advanced techniques, such as palliative sedation or implanted analgesia pumps.
EOL symptoms require an aggressive management approach. Healthcare professionals don’t have the time to try out lengthy opioid titration schedules or experiment with techniques that may or may not bring relief.
In many EOL patients, symptoms occur together in a cluster, posing a greater challenge to manage. Such a cluster magnifies the patient’s distress and can be more difficult to treat, because symptoms can have a synergistic effect on each other and increase the overall symptom burden. Fatigue is the most common symptom that occurs in clusters; it’s especially prominent in cancer patients. Other symptoms that can cluster together include insomnia, pain, difficulty breathing, nausea, weakness, vomiting, appetite changes, and altered taste.
When a patient starts to report multiple symptoms, the plan of care needs to be evaluated carefully. Once an intervention is chosen, its effect on other symptoms must be monitored. For example, providing antiemetics around the clock for nausea may increase sedation, which necessitates adjustment of other sedating drugs, such as analgesics, sedatives, and sleep medications. Recognizing a symptom cluster and providing appropriate interventions can improve control of all symptoms.
Pain is the most common EOL symptom—and the most feared. Pain can stem from many causes, including chronic conditions, such treatments as chemotherapy-related neuropathies, and disease progression. Approximately 75% of patients with advanced cancer experience pain. No matter what the cause, pain relief is a top priority because it can improve quality of life and relieve stress. Significant pain calls for aggressive pain management, including both pharmacologic and nonpharmacologic options as needed.
Assess the patient for pain by self-report using the numeric pain intensity (NPI) rating scale, with 0 being no pain and 10 the worst possible pain. An important use of the NPI is to determine intervention efficacy; a 2-point decrease in pain is deemed clinically significant. If the patient is unable to self-report pain, use a behavioral pain scale; such scales are based on behaviors determined to indicate pain. Reassess pain level after the intervention to ensure that the drug or other modality has relieved pain to the expected degree.
When pharmacologic analgesia is an option, healthcare providers must choose a medication regimen that will control pain adequately—yet they don’t have the luxury of time to change, titrate, or combine analgesics as needed. Many dying patients experience pain for long periods even before reaching EOL. A simple tool to determine what type of medication is helpful for different pain levels is the World Health Organization ladder:
- Step 1. Mild pain (NPI intensity of 1 to 3): acetaminophen; non-steroidal anti-inflammatory drugs; adjuvant medications, such as tricyclic antidepressants and muscle relaxants
- Step 2. Moderate pain (4 to 6 intensity): combination opioids, such as hydrocodone and acetaminophen or oxycodone and acetaminophen, plus continued adjuvant drugs
- Step 3. Severe pain (7 to 10 intensity): opioids, such as morphine and hydromorphone, plus continued adjuvant drugs.
Morphine (the gold standard for cancer pain) and hydromorphone commonly are used for pain relief at EOL. If the patient is still able to take oral medication, rapid dose escalation may be needed, with liberal doses given for breakthrough pain (such as incident pain or end-of-dose failure). Extended-release forms of morphine, oxycodone, and hydromorphone can provide a baseline for pain relief, with short-acting opioids used for breakthrough pain. (See Opioid hyperalgesia by clicking the PDF icon above.)
Opioids commonly are given as continuous infusions (either I.V. or subcutaneously) to relieve pain or respiratory distress. To effectively start an opioid infusion, administer a bolus dose of approximately twice the normal bolus, until comfort or respiratory control is achieved. For instance, if the continuous infusion begins at 1 mg/hour, the initial bolus should be 2 mg. The starting dose for a continuous infusion is
1 mg/hour for morphine or 0.2 mg/hour for hydromorphone, titrated to the patient’s comfort level. To ensure delivery of adequate amounts for pain control, extra bolus doses should be available to give for increased pain intensity or respiratory distress. All patients receiving opioids regularly should be placed on a laxative regimen to help prevent constipation.
Advanced analgesic techniques
Advanced techniques for hard-to-manage pain are available for treating EOL patients. If the patient is able to activate a patient-controlled analgesia (PCA) pump with a continuous infusion and patient-activated boluses, a portable pump can be provided for both home and hospital use. Opioids commonly used in PCA pumps include morphine, hydromorphone, and fentanyl citrate.
An epidural catheter can provide excellent pain relief using a solution of a local anesthetic and an opioid. The catheter can be tunneled from its entry point in the patient’s back to a flank location for greater catheter stability and easier management. The medications used, such as preservative-free morphine and bupivacaine, can be given as a continuous infusion with patient-activated bolus doses, much the same as with a PCA. The epidural catheter can remain in use for up to 30 days; it’s replaced for another 30 days if needed.
Anesthesia pain specialists can provide a wide variety of regional techniques for primary pain relief or adjunctive pain control. Regional anesthesia techniques, such as celiac plexus blocks for pancreatic cancer patients, can provide effective pain relief and have the advantage of opioid sparing.
For intractable pain, local anesthetic I.V. infusions also can provide excellent relief with an opioid-sparing effect. I.V. lidocaine is given as a bolus of 1 to 3 mg/kg over 20 to 30 minutes, with a continuous infusion started once bolus administration is complete. The anesthetic ketamine also can also be used for adjunctive pain relief; a continuous infusion is started at 0.04 mg/kg/hour, with a maximum dosage of 0.3 mg/kg/hour. Although ketamine may cause hallucinations or a dissociative state, it can relieve pain when opioids alone aren’t adequate. If the patient is taking opioids when a ketamine infusion begins, reduce the opioid dosage by 25%. This type of infusion usually is controlled by a practitioner with special skills, such as a pain specialist or palliative care physician, and may be used as part of a terminal sedation protocol.
Delirium and agitation
Many EOL patients become delirious or agitated, which can cause distress in both the patient and family. Delirium and agitation may be hard to treat. A cognitive disturbance of acute onset, delirium occurs in several types—hypoactive, hyperactive, and a mix. Early identification of at-risk patients promotes early recognition and prompt treatment. Once delirium or agitation is identified, comprehensive ongoing assessment is essential. Delirium rates in terminal patients range from 20% to 88%, with 32% to 45% of patients developing delirium during the week before death. Delirious patients may try to get out of bed frequently despite being extremely weak or unable to support their weight.
Keep in mind that delirium differs significantly from dementia, which has a slower, more progressive debilitating effect on memory and function. Delirium affects cognition, attention, the sleep-wake cycle, mood, and speech. Family members may state that the patient “just isn’t herself today” or “would never say such things normally.” Common causes of delirium are opioids, dehydration, infections, hypoxia, nutritional deficiencies, renal failure, brain metastases, and endocrine abnormalities. Presence of familiar people can help reorient and relax the patient.
To keep the patient safe during periods of delirium or agitation, physical restraint may be needed. But whenever possible, avoid restraint use because it may exacerbate agitation. Haloperidol is the most effective medication for treating agitation. This drug is less sedating than lorazepam; also, lorazepam has proven ineffective in treating delirium. When the patient reaches EOL, benzodiazepines and sedating neuroleptics are considered equally effective in controlling agitation.
Also called shortness of breath, breathlessness, or air hunger, dyspnea is a common EOL symptom. It may occur at onset of the dying process with or without lung disease, and may severely impair quality of life. Assessing the patient helps identify the underlying cause of dyspnea and determine appropriate treatment, evaluation, and response to treatment. Patients with heart failure may experience dyspnea as fluid builds and compresses lung tissue. In cancer patients with pleural effusions, dyspnea may occur as fluid amasses in the pleural cavity.
At EOL, dyspnea occurs in about 75% of heart failure patients, 20% to 70% of cancer patients, and 56% to 94% of patients with respiratory disease. Oxygen may not relieve dyspnea except when caused by hypoxia. Opioids commonly are used to ease dyspnea, especially in cancer patients; current recommendations call for oral, I.V., or subcutaneous opioid administration. If needed, a continuous infusion can be started once a bolus dose has provided sufficient dyspnea relief. Morphine is most commonly used; the starting dose is 1 to 2 mg/hour, titrated upward as needed. Be aware that nebulized morphine hasn’t provided sufficient positive outcomes and isn’t recommended.
Be sure to discuss with the patient and family the use of opioids to treat pain, dyspnea, or both before such therapy begins. Describe opioid therapy as a way to manage symptoms; some families might think it’s intended to hasten the patient’s death instead. By teaching about the use and benefits of these medications, you can help family members become more comfortable with them. (See Understanding the principle of double effect by clicking the PDF icon above.)
Weakness and fatigue
The most common chronic symptoms associated with cancer and other chronic diseases, weakness and fatigue may result from disease, its treatment, increased activity, or other factors (such as sleep disturbances). Approximately 99% of cancer patients experience fatigue. For patients in earlier stages of illness-related fatigue, studies show that L-carnitine, a micronutrient that turns body fat to energy, has positive effects—but the literature base is too small to recommend it for general practice.
Although fatigue can interfere with quality of life in terminal patients, it also may serve a protective function and help patients cope with suffering. For this reason, healthcare providers should let patients decide how active they prefer to be or which activities they can tolerate.
Constipation can be one of the most distressing symptoms to manage and a miserable condition for patients who can’t have regular bowel movements. Because many EOL patients are receiving opioids regularly, constipation can be expected, along with abdominal pain, nausea and vomiting, and a continued urge to defecate (with poor results). Poor oral intake and inability to tolerate fluids can lead to dehydration and exacerbate the effects of medications and lack of activity.
Therefore, a bowel regimen should always accompany opioid therapy. If the patient is able to take oral laxatives and stool softeners, provide these on a regular basis. If the patient can’t take adequate fluids, avoid giving bulk-forming laxatives such as Miralax, as the patient may be unable to consume enough fluid to make the laxative work. If constipation is severe, administer both oral laxatives and rectal enemas or suppositories as ordered. For opioid-induced constipation, methylnaltrexone given subcutaneously 0.15 mg/kg can provide laxation in 4 hours. Sorbee brand candies containing sorbitol (which encourages laxation) can be used for milder constipation.
Nausea and vomiting
Nausea and vomiting are more common in earlier stages of chronic illness; also, they may result from such treatment as chemotherapy. Antiemetics can control these symptoms and may need to be given around the clock.
Poor secretion control
At EOL, secretion control can be a challenge. The so-called “death rattle”—noisy, rattling breathing—results from movement of secretions that have pooled in the throat. It frequently occurs when the patient lacks the capacity to clear secretions. Suctioning at this time can cause discomfort and distress, leading to agitation and increased secretion production. Instead, place a scopolamine patch behind the patient’s ear, as ordered, to help dry up secretions. Also consider giving I.V. or subcutaneous glycopyrrolate (Robinul). Be aware that I.V. administration provides a faster onset.
Most EOL patients have little appetite and can’t maintain enough oral intake to support their caloric needs. Total protein levels and albumin indicate the level of nutritional deficit. As death nears, the body begins to shut down and nutritional needs decrease dramatically. At this time, consider offering the patient a favorite food if he or she can still swallow.
Many families fear the EOL patient is starving to death. (In reality, the body no longer requires nutrition and hunger is suppressed.) Some families become so concerned they consider gastrostomy tube placement to provide liquid nutrition. For certain patients, a feeding tube can be useful—for example, a patient who’s had an acute stroke and is expected to make some level of meaningful recovery but not to regain the swallowing reflex. However, for most terminal patients, a feeding tube only provides liquids the body can no longer use, resulting in edema that can cause painful swelling of the extremities.
When discussing nutrition, be sure to offer information and support to the patient and family. Supporting families who are making decisions about tube feedings can be time-consuming and difficult to witness. But many families report they valued the support they received from professionals who cared for a loved one unable to take in nutrition.
Understanding palliative sedation
Palliative sedation is a controversial technique used primarily for patients with intractable symptoms who haven’t responded to more mainstream treatments. In uncontrolled dyspnea, nausea, delirium, or pain, palliative sedation can provide relief for both the patient and family members who must watch the patient suffer. The goal of this technique is to relieve suffering, not hasten death. Don’t confuse palliative sedation with euthanasia, which implies the purposeful ending of a patient’s life.
Medications that can be used for palliative sedation include I.V. or subcutaneous midazolam and barbiturates, alone or in combination. The Mayo Clinic also endorses the use of propofol and ketamine.
The decision to use palliative sedation should come after clinicians and family members agree that the patient’s symptoms haven’t responded to therapy and palliative sedation is the only option that potentially could ease symptoms. In a study of 78 dying patients with refractory symptoms, median duration of palliative sedation was 22 hours. Patients’ deaths weren’t hastened; in fact, they had a longer survival than similar patients who weren’t sedated, and families felt the outcomes were satisfactory. (In a systematic review of 10 studies of palliative sedation, average duration of palliative sedation was 2.8 days.)
Palliative sedation should be supervised or provided by a palliative care specialist or other provider skilled in palliative sedation. Families should be educated about this technique and what to expect. Above all, teach the family that palliative sedation is meant to relieve the distress of refractory symptoms, not to hasten death.
Educating and supporting patients and families
Providing education about the dying process and setting goals of care helps ensure that family members have input into their loved one’s care. Most often, families choose comfort as the goal, commonly expressed as “We don’t want her to have pain” or “”e just want him to be comfortable.” If the patient has an advance directive that calls for use of pain medication even though it may hasten death, the discussion is a bit easier.
Discussing the goals of care gives healthcare providers a sense of how the family feels about specific therapies (such as opioids) and clarifies questions or misperceptions. Keep in mind that family members might be unfamiliar with the decisions that need to be made, so ensure they fully understand the options. Some families are opposed to continuous morphine administration, believing it hastens death; inform them that it can relieve dyspnea and ease pain even at low doses. Taking the time to teach them about the benefits of pain relief can make them more comfortable with treatment.
Also know that when considering the option of “doing everything” possible for their loved one, family members may not understand what this means—which interventions will be given and their implications. Say, for instance, the family opts for intubation and ventilatory support for a patient with severe respiratory disease. They may not realize that once started, these interventions may need to be continued or else the patient will die. Intubation and ventilation require sedation, meaning the patient won’t be able to make decisions. Thus, the difficult decision of whether to stop respiratory support may fall on the family. (Even if the patient has an advance directive, the family’s wishes sometimes can override this document.) Be sure to provide support for them as they make these heart-rending decisions. For instance, when discussing the meaning and implications of cardiac resuscitation and ventilation, give the family all the facts they need so they can make informed decisions that are right for the patient.
Discussing the dying process also can be helpful. For many family members, this might be the first time they’re seeing a person die. Consider opening the discussion by describing what occurs when someone dies. For example, explain how apnea begins, mentioning that the patient will take shallower breaths and apneic periods will be more frequent as death nears. This can reassure the family and make it easier for them to stay at the patient’s bedside.
When you care for a patient near death, you’re providing a special type of care. The day a person dies should be as important as the day of birth. Each patient is a unique individual and should be celebrated. Controlling EOL symptoms, providing family support, and recognizing the patient’s unique attributes can make this area of nursing practice as rewarding as it is challenging.
Yvonne D’Arcy is a pain and palliative care nurse practitioner at Suburban Hospital in Bethesda, Maryland.
Thank you so much for your very helpful article. I am a former Charge Nurse who worked with end of life patients. Today I turned to your journal for help with a family friend. Although difficult,I made the phone call to the pt.family. He made his transition in the night. My heart then turned to the person’s family and their needs.
My nursing assessment is this:
The love and care you give to families and friends in time of need is one of the important aspects of our job. As a Nurse Educator, I would teach this daily.
Thank you for a very well articulated, professional, yet accessible article. As a nurse educator with a family going through this right now, this article was extremely helpful in finding ways to explain what to expect to my non-health care professional relatives. I am so glad I found this today! Dr. G
As I sit beside my sister at this moment, this article has helped calm me. This is our 3rd night of her transitioning to EOL. Yes, it is hard & scary. We have had around the clock nurses for the past 36 hours, tonight being another crucial time (my sister is not aware of course) but of all times, a nurse is not available. I am now with my sister & told to give her the meds, which are liquid morphine & 2 others. I was not prepared for this but I can do anything to help my sister. I am able to call Hospice to send someone during the night, I just wasn’t expecting this. My sister has been fighting Stage 4 pancreatic cancer for 5 years, one month & 24 days. Thank you for listening.
Thank you for these articles they have been so very helpful
my fiancé suddenly changed the expression on his face from bewilderment to anger & then closed the curtains around him, after I had requested help in turning him on his side in bed, which was his request. I had initially told him only he could let me know what he wanted & that I would respect that preference. to this day I have no idea whether his reaction came from the staff’s ignoring his request to be turned on his side or disappointment in me that I could not make this happen for him. he was getting oral morphine for lung cancer pain & chemotherapy, so I wonder if that could have influenced his behavior as well. he died the next day in the afternoon. any feedback welcome.
Thank you this has helped me to understand more about EOL. My family and I are about to undergo a very real and hard part of life. Properly informing patients about the EOL symptoms and what can be done to alleviate them is in my opinion the most crucial step. In our case I’ve had to do all the research myself to gather more information in order to prepare myself for what will happen and the options we have available to insure our loved one doesn’t suffer.
My husband has pancreatic cancer and has just been admitted to hospital in terrible pain they are administering pain meds and the pain didn’t seem so bad this afternoon but he is now agitated and seems really stressed it seems like he may be near sol I’m wondering how long this will go on for please help
I’m an 83 year old widower who has been fretting about shortness of breath yet my oxygen level is in the high 90’s. The article took my stress away by reassuring me that it is quite normal at EOL
Extremely valuable and helpful. Thank you. More people should learn about the EOL of process the human body undergoes, which could alleviate prolongation of this painful inevitable occurrence.
very informative. Thank you so much for your honesty. God bless you for doing this so family members can learn.
Thank you for the blessing of this article. It has brought me knowledge that has improved my perspective. God bless you
Thank you for a very insightful article about this difficult topic.
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