The purpose of this course is to describe end of life care and discuss pharmacologic and non-pharmacologic pain management for adults at the end of life.
This CE offering is limited to pain management at the end of life in the adult patient.
After completion of this continuing education offering, the reader will be able to:
Differentiate among palliative, end of life, and hospice care.
Identify barriers to pain management at the end of life
Use the World Health Organization’s 3 step ladder to identify appropriate pain management at the end of life in the adult patient.
Describe 3 non-pharmacological approaches to pain management at the end of life in the adult patient.
Understand the influence of individual and cultural diversity when communicating with patients and their families with respect to end of life care.
Locate 3 educational resources related to end of life/palliative care available to clients and their families.
Develop individual attitudes, beliefs and values about death and dying through the process of self-reflection.
End of life care is one of the core components of palliative care and is central to the provision of good general care (Sherwen, 2014). It is an essential element for patients of all ages who are faced with a serious illness that i likely to end in death. End of life care is care provided to people who are near the culmination of their life and have stopped treatment to cure or control their disease. End of life care includes physical, emotional, social, and spiritual support for patients and their families. The goal of end-of-life care is to control pain and other symptoms so the patient is as comfortable as possible. End-of-life care may include palliative care (also called comfort care), supportive care, and hospice care. (NCI, 2018).
In 2016, life expectancy at birth was 78.6 years for the total U.S. Population. For males, life expectancy was 76.1 in 2016 and for females, life expectancy remained the same at 81.1 years (CDC, 2016). Many of us will be faced with life limiting illnesses such as cancer, liver disease, stroke, dementia, HIV, and pulmonary disease, to name a few.
The World Health Organization (WHO, 2018) reports that 80% of patients with AIDS or cancer, and 67% of patients with cardiovascular disease or chronic obstructive pulmonary disease will experience moderate to severe pain at the end of their lives. Pain is one of the most important symptoms in palliative care and has a major impact on the quality of life of cancer patients (Praveen, Chowdary, Kumar, & Aanandhi, 2018). Evidence demonstrates that pain is undertreated in palliative care settings, contributing significantly to patient discomfort and suffering at the end of life (Fink, Gates, & Montgomery, 2015). Paice (2015) reports that unresolved pain may hasten death by increasing physiological stress, decreasing immunity, and decreasing mobility which in turn can increase the workload of the heart and lungs, increasing the possibility of pneumonia and/or thromboembolism.
End of life care – Care that helps all those with advanced progressive and incurable illness to live as well as possible until they die (Rosser & Walsh, 2014. p.14)
Palliative care – The active, holistic care of patients with advanced progressive illness in order to achieve best possible quality of life for patients and their families (Rosser & Walsh, 2014. p.14). It is not just for end of life.
Hospice - a type of palliative care program generally initiated in the final 6 months of life. Can be offered in the home or hospital (Institute of Medicine, 2014)
Pain - An unpleasant sensory and emotional experience associated with actual or potential tissue damage (IASP, 1979). “Pain is what the person says it is.” (McCaffery & Pasero, 1999).
Complementary Therapy - non-mainstream practice that is used together with conventional medicine (National Institute of Complementary and Integrative Health, 2017).
Alternative Therapy – non-mainstream practice that is used in place of conventional medicine (NCCIH, 2017).
Barriers to Pain Relief
Unresolved pain control is of critical concern for all dying patients. The effects of inadequate pain relief may hasten death by decreasing immunity and increasing physiological stress (Paice, 2015). Additionally, unresolved pain can decrease mobility which in turn can contribute to pneumonia and the formation of thrombi. Fear surrounding medication use remains a significant barrier to symptom management at end of life.
Gender and age can also be barriers to adequate pain control. There are gender differences in perception of pain. Although women have lower tolerance for pain and rate its intensity higher, they are less likely to receive adequate pain relief (Mazanec & Panke, 2015). Older adults are less likely to report pain because they think it is a normal art of the aging process. Their pain is very often undertreated even when they report of pain but they do not want to be seen as a bother (Delacorte, Rigo, & Delacorte, 2011).
Although patient comfort is a goal, nurses may fear the possibility of hastening death and causing adverse effects, such as depressed respirations, resulting in more cautious use of medications or a reluctance to initiate medications at all (Howes, 2015). Respiratory effects generally occur in those who take opioids for the first time however, increasing the dosage of opioids at the end of life is not associated with shorter survival (Prince-Paul, & Daly, 2015).
Family members may have pain relief goals that are not congruent with what the patient wants. The family may not wish their loved one to experience the sedative or other side effects of pain medicine This disconnect between what the patient wants and what the family wants may prevent the patient from receiving adequate pain management at the end of life (Reddy, Yennurajalingam, & Bruera, 2013).
Another barrier to pain relief may be caregivers’ lack of knowledge and skills leading to feelings of inadequacy to manage the patient at home. The scheduling and care logistics for family caregivers can be overwhelming, given the large number of medications to manage, along with handling treatments such as oxygen, injections, dressings, and catheters (Given & Reinhard, 2017).
Opiophobia or fear of addiction may cause patients to underreport pain. Patients’ under-reporting of symptoms and fear of addiction, tolerance, and side effects of opioids and sedatives may lead to conservative use in palliative care (Sim, Ho, & Kumar, 2014). Fear of addiction has also been documented as a reason why providers may also under prescribe pain medication for their patients (Kwon, 2013). No patient should needlessly suffer because of the unfounded fear of the use of opioids and sedatives at the end of life (Guevin, 2014).
Adequate pain control begins with a thorough assessment of the location, intensity, quality, and pattern of the pain. Aggravating and alleviating factors, as well as the effects the pain has had on the patient’s life, must also be included in the assessment. Any misconceptions or fears the patient has regarding medication use should be addressed.
The oral route of medication administration is considered the least invasive and is preferred, if the patient has a functioning gastrointestinal (GI) tract. Pain medications should be given around the clock (ATC) with additional doses given for breakthrough pain. To maintain freedom from pain, drugs should be given every 3-6 hours, rather than on demand. Scheduling pain medication ATC is necessary in order to maintain blood levels and prevent pain breakthrough pain. To calm fears and anxiety, additional drugs – “adjuvants” – should be used.
The World Health Organization (2018) has developed a three-step ladder that is useful in cancer pain relief in adults. This three-step approach of administering the right drug in the right dose at the right time is inexpensive and 80-90% effective.
Step 1 would be to administer a nonopioid for mild pain (1-3 on a pain scale of 10) such as acetylsalicylic acid (ASA), acetaminophen, or a nonsteroidal anti-inflammatory drug (NSAID) such as, ibuprofen. The total dosage of ASA or acetaminophen should not exceed 150–300 mg/kg or patients can develop toxicity (Nausea, vomiting, diaphoresis and tinnitus, which can progress to ataxia, delirium and coma).
Acetaminophen relieves pain and reduces fever but doesn’t impair platelet aggregation. Side effects include liver dysfunction which can be manifested by dark urine, clay colored stools and jaundice with doses > 4000mg/day. This should be avoided because taking more medication affords no added pain relief. Caution should be used if patients are taking additional drugs that contain acetaminophen. Acetaminophen is commonly mixed with an opioid to treat mild to moderate pain.
Adjuvant drugs such as antidepressants such as amitriptyline, antiseizure drugs such as gabapentin, and corticosteroids such as dexamethasone may be prescribed added as needed.
Step 2 uses opioids for mild to moderate pain (4-6 on a pain scale of 10). Step 1 drugs can be added to Step 2 drugs. Codeine, oxycodone/aspirin and oxycodone/acetaminophen can be used. Additionally, adjuvant drugs can be included.
Step 3 is taken for moderate to severe pain (7-10 on a pain scale of 10). This would also include the use of nonopioid drugs as well as adjuvant medications. Morphine sulfate, hydromorphone, methadone, fentanyl, and meperidine are examples. Meperidine is not used long term (not more than 2 days or 600mg in 24 hours because it can cause neurotoxicity).
Possible side effects of Step 2 and Step 3 drugs are constipation, sedation, nausea and vomiting, itching, and depression. Other drugs are often given to counteract those side effects and included in the drug regime.
Nonopioid drugs include acetaminophen), aspirin, NSAIDS such as ibuprofen, ketorolac tromethamine, indomethacin, and COX-2 NSAID’s like celecoxib.
Nonsteroidal anti-inflammatory drugs (NSAID’s) reduce secretion of a biochemical mediator, prostaglandin, which activates sensory nerve endings that transmit painful messages. Prostaglandins are released during the inflammatory process in bones and joints resulting in pain at the site of inflammation. NSAID’s inhibit the enzyme cyclooxygenase (COX) which is essential to prostaglandin production. Many inhibit both COX-1 (stomach/kidney) and COX-2 (inflamed tissue) enzymes. They can be used to relieve the pain of bony metastasis. Side effects of NSAID’s include GI symptoms (10% of patients) as well as bleeding ulcers, inhibited platelet aggregation, neurological effects (confusion, headache, dizziness) in the elderly, retention of salt and water in those with liver and heart disease and bronchospasm in those with asthma.
Side effects of NSAID’s can be prevented by maintaining a safe dose. Check stools for occult blood, monitor blood urea nitrogen and creatinine, and administer agents that reduce gastric acid secretion like cimetidine and omeprazole. Be aware of compounds containing aspirin like Alka Seltzer as they can contribute to bleeding.
Opioids such as morphine, oxycodone, hydromorphone, methadone, fentanyl, and fentanyl citrate are used for moderate to severe pain. They act on the body’s opioid receptors in the brain to produce analgesia, reduce anxiety and promote well-being.
Morphine Sulfate is the gold standard for controlling pain at the end of life. It is the best-known opioid (Paice, 2015). There is no ceiling on morphine which means the patient can receive increasing doses of the drug in order to achieve relief of pain. Morphine is available in oral, intravenous, and rectal preparations.
Oxycodone is not available parenterally. Codeine relieves pain of medium intensity and is an effective cough suppressant. Hydromorphone is highly potent. It is 4 times stronger than morphine sulfate and can cause neurological side effects.
Levorphanol is available for both oral and parenteral administration. Effects and side effects are similar to morphine sulfate. Methadone is fairly inexpensive but a disadvantage is its prolonged half-life making equianalgesia difficult. Fentanyl comes in transdermal patches which are worn over 72 days. Fentanyl citrate is available as a transmucosal lozenge.
Side effects of regular administration of opioids include constipation, nausea/vomiting, sedation and impaired cognition, and neurotoxicity. Other effects include itching, sweating, dry mouth, and urinary retention. All opioids will decrease gastrointestinal secretions and peristalsis. Patients should be on a bowel regime, in order to prevent constipation. Morphine stimulates the chemoreceptor trigger zone in the medulla which can cause nausea, vomiting, and also delays gastric emptying (gastroparesis), causing abdominal pain. Most patients experience sedation initially. It may disappear within a week. Opioids can also cause neurotoxicity, which is manifested by delirium, agitation, and muscle twitching or myoclonus.
Adjuvant medications are used in conjunction with opioids and target underlying pain mechanisms such as anxiety or neuropathy.
Corticosteroids such as dexamethasone are frequently added to a medication regime. They have an anti-inflammatory effect, inhibit prostaglandin release, reduce edema and can be very effective against bone pain. Short term side effects include hypertension, weight gain, increased risk of infection, venous thromboembolism, mood changes, hyperglycemia and gastrointestinal ulceration. Long term (>3 months) side effects include cataracts, muscle weakness, osteoporosis, hyperlipidemia, and adrenal insufficiency.
Antidepressants such as amitriptyline inhibit the reuptake of serotonin and norepinephrine, thereby reducing neuropathic pain. Because of their anticholinergic effects, they can produce dry mouth and eyes, blurred vision, urinary retention and constipation, postural hypotension, and arrhythmias. Nortriptyline has fewer side effects and is better tolerated in the elderly. Selective Serotonin Reuptake Inhibitors (SSRI’s) like fluoxetine, escitalopram, sertraline, and paroxetine can also be used.
Anticonvulsants such as gabapentin can be prescribed to relieve neuropathic pain. Although dizziness and drowsiness can occur, gabapentin has less side effects than other anticonvulsants such as phenytoin, or carbamazepine.
Anxiolytics such as diazepam, alprazolam, lorazepam, and midazolam can all be used for anxiety but sedation is a side effect. High doses can cause a decrease in blood pressure and respirations.
Biphosphonates such as alendronate sodium, and palmindronate sodium decrease pain from bony metastases and prevent pathological fractures by diminishing bone reabsorption.
Complementary and Alternative Approaches to Pain Management
Complementary and alternative therapies are nonpharmacologic interventions that are used to enhance and support end of life care.
TENS (transcutaneous electrical nerve stimulation) primarily alters pain perception through the stimulation of A-beta (sensory stimulation) nerve ﬁbers, which in turn may inhibit the transmission of a nociceptive stimulus mediated by A-delta and C-ﬁbers (Loh, & Gulati, 2015).
Music therapy during palliative and end-of-life care is well established as having positive benefits, including the reduction of pain which has been reported (McConnell, Scott, & Porter, 2016). Music therapy provides distraction, an opportunity to relax in turn reducing pain and anxiety (Porter et. al, 2017).
Acupuncture is aimed at correcting imbalances in the flow of qi by stimulation of acupoints using fine needles that are inserted into the skin and underlying tissues at specific points, for therapeutic or preventative purposes (Laio, Apaya, & Shyur, 2013.) Pain relief from acupuncture has also been attributed to stimulation of the body's natural painkillers such as endorphins.
Massage refers to pressure application to soft tissues of the body by trained therapists who use techniques such as pressing, rolling, kneading, or rubbing body tissues and underlying muscles. It is used for promoting circulation, reducing pain, eliminating waste products from the body, and relaxing muscles and nerve tissue (Satija, & Bhatnagar, 2017).
Qigong is a component of Chinese medicine that combines movement, meditation, and regulation of breathing to enhance the flow of qi (vital energy) in the body, to improve circulation, and enhance immune function (Berenson, 2006, p.502).
Reiki is a modality that involves the use of light touch. Evidence suggests that the deep relaxation effect Reiki produces has a positive effect on stress, anxiety, and perception (Berger, Taveres, & Berger, 2013).
In addition to those strategies listed above, prayer, the application of heat/cold, aromatherapy, herbal medicine, pet therapy, biofeedback, relaxation and meditation are nonpharmacological approaches to pain management.
Nurses who provide care at the end of life can support the patient and their family by offering resources for assistance. Free starter kits are available in a variety of languages on The Conversation Project website (www.theconverationproject.org). The Conversation Project is a national campaign dedicated to helping people talk about their wishes for end of life care, and to transforming our culture by bringing discussions about dying into the open (Yoder, 2018).
In the United States, the End-of-Life Nursing Education Consortium (ELNEC) core curriculum was developed in 2000 to educate nurses about palliative care and end of life care and has expanded to other countries (Ferrell, Malloy, &Virani, 2015). A recent summit convened by the Hospice and Palliative Nurses Association and attended by leaders of 26 nursing organizations strongly endorsed the ELNEC as the exemplary program to deliver education regarding the importance of nursing’s role in pain and symptom management and developed an agenda to advance these efforts (Paice, Battista, Drick, & Schreiner, 2018).
The Center to Advance Palliative Care (CAPC) offers free educational resources and provides evidence-based summaries on best practices related to palliative care (www.capc.org).
The City of Hope-Palliative Pain Resource Center (COH-PPRC), is a central source for collecting pain assessment tools, patient education materials, quality assurance materials, end of life resources, research instruments and other resources, including a knowledge and attitudes survey regarding pain. The purpose of the COH-PPRC is to serve as a clearinghouse to disseminate information and resources to assist others in improving the quality of pain management and end of life care (http://prc.coh.org). Additionally, the Institute of Medicine (IOM) has several resources that can be useful to nurses and the patients/families they care for. You can visit www.iom.edu/endoflife to learn more.
Implications for Nursing
For the millions of Americans who work in or with the health care sector—including clinicians, clergy, caregivers, and support staff—providing high-quality care for people who are nearing the end of life is a matter of professional commitment and responsibility (IOM, 2014). Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual (WHO, 2018). As nurses, we are in a unique position to assist patients and families through a deeply emotional and often frightening time in their lives. Nurses must advocate for their patients and ensure that comfort is a central element in end of life care. Identifying basic management of pain and collaborating with the health care team to alleviate suffering at the end of life is of tantamount importance.
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