- Identify various types of pain and the pharmacological and non-pharmacological interventions used for management.
- Describe components of a comprehensive pain assessment.
- Explain barriers associated with effective pain management.
- Identify the most common non-pain symptoms associated with patients nearing the end of life.
- Describe the interventions used to relieve refractory dyspnea and terminal restlessness in patients nearing the end of life.
Perhaps one of the greatest concerns of patients who are nearing the end of life is pain and discomfort. Most terminal illnesses are associated with one or more physical manifestations of discomfort. For instance, patients with cancer usually have some type of pain, and patients with chronic pulmonary disease suffer from breathlessness. The International Association for the Study of Pain defines pain as “an unpleasant sensory or emotional experience associated with tissue damage” (IASP, 2014).
Clinically, pain has been defined as what the patient subjectively says that it is. In a report by the National Center for Health Statistics, approximately 90% of patients being admitted to hospice care had their pain assessed at the initial visit; however, one-third of those patients continued to report pain near the time of their death (Caffrey, Sengupta, Moss, Harris-Kojetin, & Valverde, 2011). Pain is a symptom that requires continual assessment and evaluation of the current interventions used for its management. As those who work with patients in pain know, the longer pain is left unmanaged, the more difficult it may be to treat.
In addition to pain, patients nearing the end of life often have other types of negative symptoms including: dyspnea, cough, nausea and vomiting, constipation, anorexia and cachexia, dysphagia, fatigue, seizures, lymphedema, depression, anxiety and terminal restlessness or delirium. The aim of this chapter is to examine the current assessment and treatment options for pain and other symptoms that can occur in patients as they near the end of life. Additionally, we will discuss some common barriers associated with the pharmacological management of pain.
Pain at the End of Life
Types of Pain
Pain is usually classified in terms of its physiological mechanism (somatic, visceral, or neuropathic) and its temporal pattern (acute or chronic) (Coyle & Layman-Goldstein, 2001). It is important for the clinician to understand what type of pain is involved in order to be able to tailor their assessment and interventions for that patient. Somatic pain, also known as nociceptive pain, is often well-localized to one area, usually within deep musculoskeletal tissues. Bone pain is an example of somatic pain. Visceral pain is described as deep squeezing or pressure and is not as well localized to one area. It is often associated with the compression or stretching of thoracic or abdominal viscera.
Pancreatic or liver cancer often causes this type of pain (Coyle & Layman-Goldstein, 2001). Lastly, neuropathic pain is associated with illness or injury to the peripheral or central nervous system, such as a tumor pressing on a specific nerve in a patient with cancer. Neuropathic pain is described as a sharp, shooting, or burning pain, often like an electrical shock that penetrates one’s body. The management of pain is often dependent on the origin of the pain and which type of pain is involved.
Pain can also be classified in terms of temporal pattern. Patients can have both acute and chronic pain with more than one type or location of affliction. Acute pain is best defined by its onset. For the most part, the source of the pain can be identified and is often accompanied by other physiological signs and symptoms, such as trauma to the afflicted area. Acute pain often comes on suddenly from a well-identified cause. It is typically also short-lived, meaning that once the underlying problem is resolved and/or analgesia is initiated, the pain usually resolves. Sub-acute pain is a type of acute pain characterized by a slower onset, often over a few days, in which pain slowly escalates from mild to more severe.
Another type of acute pain is called intermittent or episodic pain. Intermittent or episodic pain occurs only once in a while, often during a regular time period, such as cramping pain associated with the monthly menstrual cycle; or it may also occur irregularly, such as with a migraine headache.
Chronic pain often worsens over time, lasts for an extended period of time and is accompanied by having a negative effect on the patients overall functioning or quality of life (Fink & Gates, 2010). Chronic pain can further be categorized as chronic malignant or chronic non-malignant pain. Chronic malignant pain is related to pain derived from a primary cancer or metastasis from cancer. It can also be a result from cancer related treatment, such as radiation. Chronic non-malignant pain refers to all other non-cancer chronic pain, such as chronic back pain, fibromyalgia or arthritis.
Assessment of Pain
A thorough and comprehensive assessment of pain is by far one of the most important skills that nurses who care for patients nearing the end of life should possess. As mentioned before, pain is one of the most feared symptoms but also one that can be managed well following a thorough assessment and pain management plan. While there are a plethora of formal pain assessment tools that are used in practice, we will describe the necessary components of any good pain assessment plan.
First, as clinicians it is important to remember that patients may not always use the term “pain” to identify their pain or discomfort. Sometimes this is due to cultural reasons and other times, it can be the patient’s way of denying the real pain they are feeling. It may be helpful for the clinician to re-word the question using another term for pain, such as discomfort or aching. For example, a nurse asks their patient a general question such as, “Mr. Smith, are you having any pain today?” He replies “no;” but when based on the objective signs the nurse is observing, they assess that he is having some type of discomfort.
The nurse could then re-phrase the question as, “Mr. Smith, I understand you are not having any pain, but I notice you are holding onto your left arm and wincing when you move. Are you having any discomfort or soreness in that area?” A more direct question that incorporates your observations, as well as using a different term for pain, may be more effective in getting you an accurate answer.
Current and usual pain experience
Next, the nurse needs to gather all the necessary information about the pain. They will need to understand both the patient’s current pain level and their usual pain experience. This may differ and is especially important for those living with some type of chronic pain. What is their pain like today, and how is that pain in relation to what they usually experience?
If the nurse is regularly assigned to this particular patient, they will become familiar with their usual pain experience; however, if the nurse is new to the patient, they will have to elicit that information. In end-of-life care, knowing the patient’s usual pain levels will help guide the interventions and next steps related to the patient’s individual pain management plan.
Next, the nurse needs to assess the site where the patient is experiencing pain. This could be multiple locations, depending on the patient. The nurse will need to evaluate each site as a separate location, if applicable, for the remaining assessment questions.
The intensity or severity of pain is often obtained in a numeric format such as on a scale from 0 to 10. Zero is considered to be having no pain and 10 is considered to be the worst pain possible. Be sure to tell the patient the scaling information each time you are rating the intensity of their pain. This is because they might not have ever been informed about this scale before, they may have forgotten what the values represent, or they may have recent cognitive changes that have affected their ability to remember pain scale values.
If the patient is deemed to have severe cognitive impairment, then another alternative form of pain intensity rating will have to be used. Always re-state the numerical rating back to the patient once they give it to you for clarification. A follow-up to this rating would be to evaluate whether this value is higher or lower than their usual pain intensity at that pain site.
The quality of pain refers to a description about what the patient’s pain feels like. What kind of pain is it? Is it sharp or dull? Is it aching or squeezing? Does the pain stay in that one location or does it seem to spread out or radiate to nearby areas? This rating can be very helpful in understanding the type of pain involved (somatic, visceral, or neuropathic) and initiating the most effective pharmacological intervention for that specific type of pain.
It is important to understand how long the patient has experienced this pain and whether it is a new pain. Is this pain always present or is it intermittent? The nurse needs to evaluate how long the patient has been dealing with this pain in terms of hours, days, weeks, months or years.
Part of a thorough pain assessment always involves understanding any factors that bring about the pain or make the pain worse? Is there something that the patient does that precipitates the pain?
In addition to understanding what brings on the pain, it is also as important to understand what helps to alleviate the pain. This could include medications, positioning, or even a lack of movement. Of those alleviating factors, if any, how long do they last before the pain returns?
Current pain regimen
In the clinical setting, asking about the patient’s current pain regimen is often forgotten. Nurses and clinicians are very good at asking about the intensity and duration of pain but often never evaluate exactly what the patient is using to manage the pain. Although the patient’s medical record and medication record may be available to the nurse, it is very important to actually ask the patient (or family) what the patient is actually taking for pain and how often.
They may have several medications listed for pain in their medical record that are ordered on an as needed basis. In the inpatient setting, the nurse will have the good fortune of having documentation as to when the last dose was administered and how often they have been getting each medication. In the home or clinic setting, this may not be the case. Just because a medication is ordered every 2 hours as needed, it does not mean the patient is actually taking it every 2 hours.
Also, the opposite holds true in that a medication may be ordered for every 8 hours but the patient has been taking it every 6 hours. This is invaluable information that is often overlooked and could be the crucial key in providing adequate pain management for the patient. It could show the nurse if the patient is under or over medicated and if a change in dosing or schedule may be warranted. Refer to Table 6.1 for examples of questions the nurse could ask for each component of the pain assessment.
Components of Pain Assessment
|Current Presence of Pain||Do you have any pain or discomfort anywhere right now?|
|Usual Pain Experience||What is your usual level of pain like?|
|Could you tell me what your usual pain is like on a typical day?|
|How do you normally deal with the pain you experience?|
|Location of Pain||Tell me all the places in your body that you have any pain, discomfort or soreness right now.|
|Have you had pain in that location before or is this a new pain?|
|If it is a new pain, how does it compare with your previous pain?|
|Intensity/Severity of Pain||On a scale of 0 to 10, with 0 being no pain at all and 10 being the worst possible pain, what number is your current pain level? (You will need to have patient rate their pain at each location, if multiple areas identified.)|
|Is this number higher or lower than your usual pain experience at that location?|
|Have you ever had this level of pain before or is this the worst it’s ever been?|
|Quality of Pain||What words would you use to describe the kind of pain you are feeling?|
|Is your pain sharp, dull, throbbing, aching, cramping, burning, shooting, squeezing?|
|Does the pain stay in that one spot (site or sites patient identified) or does it seem to spread or radiate to other areas too?|
|Duration of Pain||When did this pain begin? (Ask for each location of pain.)|
|If you have had this kind of pain before, how long does it usually last?|
|Is your pain always there or does it ever completely go away?|
|If it goes away, for how long?|
|How long have you been living with this pain? (Days, weeks, months or years)|
|Does this pain seem to come and go?|
|Aggravating Factors||Is there anything that you do that seems to start your pain?|
|What kinds of things make your pain worse?|
|Alleviating Factors||Is there anything that you do that seems to make your pain go away?|
|What kinds of things make your pain get better?|
|Current Pain Regimen/Last Dose||What are you using to help your pain recently?|
|Are you taking medications for pain? (Ask about prescription and over the counter medications.)|
|Are you doing other things to help relieve your pain? (Heat, ice, positioning, etc.)|
|Patients Concerns about Pain||Is there anything else you’d like to tell me about your pain that we haven’t talked about yet?|