What is End-of-Life Evaluation and Management of Pain?
Discomfort and pain at the end of a person’s life are often not properly identified or treated. With the development of new medical treatments that can extend life, there’s a risk of extending suffering as well. Healthcare professionals are tasked with ensuring their patients’ comfort and need to look at the whole picture in managing end-of-life pain.
In their efforts to define what a “Good Death” is, a study focused on 36 different pieces of research that explored what patients at the end of their life felt were the most important aspects. One of the top three findings was being free of pain, with this being highly important in 81% of the studies considered.
The idea of “total pain” was introduced by Saunders as a way to assess and manage pain in people who are dying. Total pain includes four parts: the physical pain felt, emotional distress, issues in personal relationships, and the fear or denial of dying. To properly ease the discomfort of someone who is dying, all four aspects of the ‘total pain’ need to be addressed.
What Causes End-of-Life Evaluation and Management of Pain?
Pain often occurs at the end of life and is typically connected to the disease causing death. The pain can be short-term, known as acute pain, or long-term, known as chronic pain. Acute pain is generally related to procedures like surgery, position changes, or medical treatments aimed at relieving symptoms. On the other hand, chronic pain stems from a complicated interaction between different body systems. Examples of chronic pain are headaches, joint pain from arthritis, or pain from skin injuries or pressure sores.
We can categorize the pain depending on the location of the pain nerves into somatic, visceral, or neuropathic types. Each of these categories has specific pain characteristics that can guide treatment.
Somatic pain comes from receptors in the skin and tissues related to muscles and bones and usually feels deep and sore. Common sources can be the joints, bones, infections like abscesses, and skin injuries. Visceral pain, as the name suggests, involves the pain receptors in the internal organs and is usually described as a “squeezing” or “cramping” sensation. Touching the affected organ can worsen the pain. Neuropathic pain is usually described as a sharp pain that feels like a “burning” sensation or like an “electric shock.”
Pain is often accompanied by anxiety and depression, and addressing these is crucial to relieving the “total pain” a person feels. Anxious feelings caused by health conditions include a sense of impending danger in patients with breathing problems due to heart conditions, electrolyte imbalances, dehydration, and infections leading to severe illness. Certain medications can also cause feelings of anxiety. If pre-existing anxiety isn’t addressed, it can cause significant distress at the end of life.
In the final stages of life, as explained by the concept of total pain, other factors such as emotional distress, conflicts with others, and not accepting one’s impending death can also impact the pain a person feels. Emotional distress and conflicts with others can cause further suffering at the end-of-life. Problems like financial instability, marital issues, conflicts with family members, and an inability to arrange one’s affairs before death are common causes of total pain. Not accepting the end of one’s life can result from shock and anger at the idea of impending death. Counseling and spiritual care can help address these issues and aid in pain management during the end of life.
Risk Factors and Frequency for End-of-Life Evaluation and Management of Pain
Pain of different levels is often experienced by individuals approaching the end of their lives, according to a large study. This research revealed that severe daily pain was found in more than 17% of the over 20,000 participants examined. The involvement of pain doesn’t change by the cause of approaching death or the health care setting.
Pain is a common symptom in patients suffering from the most common causes of death globally, which include cancer, heart failure, chronic obstructive pulmonary disease (COPD), and lung cancer. This pain is experienced by patients both at home and in long-term care facilities.
Sadly, the management of pain towards the end of life is often insufficient. However, involving supportive care or palliative medicine can improve this pain relief.
In regard to hospice and palliative care use, there are noted racial and ethnic disparities. Yet, there’s no difference in the incidence of pain symptoms across all races and ethnicities. This issue regarding health care inequality warrants further investigation and assessment.
Signs and Symptoms of End-of-Life Evaluation and Management of Pain
Managing pain in patients at the end of their lives involves a thorough evaluation of their primary illness and how it affects their bodies. This involves a comprehensive discussion with the patient about their disease’s progression, which can help improve communication between the caregiver and the patient. The patient’s wishes and care goals should be clearly outlined from the start. Open discussions can help understand what the patient expects from their care. It’s important to consider the concept of ‘total pain,’ which includes physical and mental wellbeing.
Doctors also conduct a head-to-toe physical exam to identify factors that could be causing pain. Signs of physical pain include facial grimaces, restlessness, rapid breathing, and a quick heart rate. Patients who’ve been bedridden for extended periods could have skin sores or pressure ulcers on the back of their head, shoulder blades, back, hips, ankles, and heels.
Dry eyes could lead to painful keratitis (inflammation of the cornea) and infections. Those on long-term oxygen therapy might have skin sores around the nostrils, dryness, and nosebleeds, which can be distressing. Patients using non-invasive ventilation methods could have pressure ulcers on their nose and cheeks. In patients using a ventilator, pooled saliva and poor oral care can result in mouth ulcers and tooth decay. Improper head positioning and lack of support could lead to painful neck spasms.
Signs of undernourishment include temporal (side of the head) wasting, over- and under-shoulder-blade wasting, hollow abdomen, and dry skin. Dehydration signs are similar and include dry mucosal surfaces (like the inside of your mouth), loss of skin elasticity, and dry skin. A full, bloated abdomen could indicate constipation or urinary retention, causing significant patient distress. Examination of the genital area in patients with long-term urinary catheters can reveal ulcers and signs of infection. All intravenous access sites need regular checks for thrombophlebitis (inflammation of a vein caused by a blood clot), which can lead to pain, swelling, and infection if medications or fluids infiltrate into the tissue beneath the skin. Lastly, maintaining the patient’s dignity by ensuring good personal hygiene and wellbeing is crucial when caring for patients at the end of their lives.
Testing for End-of-Life Evaluation and Management of Pain
If you are getting close to the end of life and you’re feeling pain, your doctor will try to figure out exactly where the pain is, when it started, what it feels like, whether it’s spreading, and what makes it better or worse. The words you use to describe your pain can help your doctor figure out where it’s coming from. For instance, pain in your muscles and bones (somatic pain) is often described as aching, whereas pain in your organs (visceral pain) may feel like a cramp. Similarly, nerve pain (neuropathic pain) may feel like a burn or a shooting pain. By understanding how intense your pain is and how long it has been hurting in the last 24 hours, your caregiver can come up with a more effective way to manage it. In order to do this well, it’s important to constantly monitor and reassess your pain, especially after a treatment or therapy is given.
In order to standardize and objectively measure pain, several scales or tool have been developed. While none of these is found to be superior to the others, two scale are quite commonly used. The Likert scale measures pain on a scale of 0 to 10, where 0 means no pain at all and 10 means the worst pain you can imagine. The Wong-Baker Faces scale uses a series of faces showing increasing distress. This scale works well for children, but it’s also useful for adults who may not be able to talk about their pain. These days, several hospital units keep a board next to each patient’s bed with critical information such as the date, caregiving details, and a visual pain scale.
Upon admission, patients are educated to point on the pain scale to indicate the severity of their pain and also choose a facial expression that matches their feeling. To provide accurate and effective care, it’s crucial to use the same scale consistently between caregivers. For patients with cognitive issues or dementia who may not be able to express themselves well, there are methods that caregivers can use to observe and assess the presence of pain. The Pain Assessment in Advanced Dementia (PAINAD) scale is one such tool that can help quantify pain and observe the response to treatment in patients with dementia.
Treatment Options for End-of-Life Evaluation and Management of Pain
Managing pain towards the end of life involves a combination of medication and non-medication methods, as well as psychological support.
Starting with medication, a step-by-step approach suggested by the World Health Organization (WHO) is usually followed. This approach begins with non-opioid drugs, escalating to opioids – drugs that are very effective at reducing pain. This process is designed to eventually eliminate pain. But each patient’s initial level of pain should be carefully evaluated to avoid delaying treatment.
The most common initial medications used for pain are drugs like ibuprofen (an example of nonsteroidal anti-inflammatory drugs, or NSAIDs), which work by reducing inflammation, a common source of pain. However, these drugs need to be used wisely as they can have side effects like stomach bleeding, kidney problems or high blood pressure. Acetaminophen (like Tylenol) is another common pain medication that must be used carefully because too much can harm the liver.
Opioid painkillers are often used when pain becomes severe, and they are typically considered the best solution for pain management towards the end of life. Opioids work by interacting with specific receptors in the brain to reduce the feeling of pain. However, they must be used safely and under supervision as they could slow a person’s breathing if too much is used.
There are many types of opioids, and the choice of which to use depends on the individual patient’s needs, taking into account things like their specific condition and how their body processes drugs. For instance, options include morphine, oxycodone, and hydromorphone which are all powerful pain relievers, but they need to be used carefully, particularly in patients with kidney or liver problems. Fentanyl is another option that can be given through a skin patch for patients who can’t take medications orally and methadone can be used orally and is relatively inexpensive but can impact the heart rhythm.
Other medications called non-opioid adjuvants can also be helpful for pain relief at the end of life, often in combination with opioids or NSAIDs. Examples include antiepileptic medications like gabapentin and pregabalin for certain types of pain, and corticosteroids which can help improve mood and appetite.
Besides medication, non-drug methods also play a critical role in managing pain. This includes measures to avoid causing pain, such as proper positioning of the body, protecting the skin from ulcers, and providing good oral care and hydration to avoid painful mouth conditions. Emotional support, such as counseling, can help with anxiety and improve relationships. Therapies like acupuncture and Reiki may also provide additional pain relief.
What else can End-of-Life Evaluation and Management of Pain be?
There are certain conditions that can imitate end-of-life pain, and these require careful examination for appropriate treatment. For example, severe dehydration can cause changes in mental status, tiredness, and discomfort. This could be mistakenly identified as pain, and taking pain medications may further affect the state of mind. In the progression of a disease, failure of different organs can occur. Impairment in kidney and liver functions can lead to a build-up of harmful waste products in the body.
Long-term usage of painkillers, like opioids, can lead to drug dependency. A decrease in the dosage could then lead to withdrawal symptoms that mimic pain. Prolonged use of opioids could also cause a condition where the person becomes more sensitive to pain, leading to a painful cycle that’s hard to break.
What to expect with End-of-Life Evaluation and Management of Pain
When dealing with end-of-life situations, it’s important to consider each person’s expected lifespan to make the best care decisions. If someone is nearing the end of life and has strong family or community support, it might be best for them to return home to their familiar environment. However, if that social support isn’t present, receiving care in a hospice facility could be a better choice.
For patients grappling with severe, unmanageable pain as their health sharply declines, palliative sedation may be offered as an option. This involves giving medications to reduce consciousness and ease suffering at the end of life.
Possible Complications When Diagnosed with End-of-Life Evaluation and Management of Pain
Non-steroidal anti-inflammatory drugs, or NSAIDs for short, are often used to manage pain but they can lead to undesired side effects. Acetaminophen, a common type of non-prescription painkiller, can potentially harm the liver, particularly in individuals with existing liver problems. Other types of NSAIDs, such as ibuprofen and ketorolac, could cause severe issues in your stomach and intestines, including bleeding, ulcers, and even puncturing (perforation). If you’re using any of these medications over a prolonged period, you should also take drugs called proton pump inhibitors, which help prevent these severe stomach issues. Another risk linked to NSAIDs is that they can increase the likelihood of stroke, heart attack, and kidney failure.
Opiates, a class of strong painkillers, can lead to serious consequences if taken incorrectly and cause an overdose. Common signs of an overdose include feeling quite tired and having a decreased level of consciousness. If not addressed quickly, the overdose can cause slowed or stopped breathing. Other symptoms can include difficulty breathing, low oxygen levels, and issues related to low blood pressure. In suspected overdose scenarios, a drug called Naloxone, which opposes the effects of opiates, should be used through different methods like injections under the skin, into the muscle, into the veins, via the nose, or through a tube into the airway. The usual dose for adults is between 0.4 mg to 1 mg. If an individual continues to show signs of an overdose, additional doses can be given every 3 to 8 minutes. Opiates can lead to physical and mental addiction, meaning there’s a risk of misuse when treating pain.
Using opioids can sometimes make you more sensitive to pain (a condition called opioid-induced hyperalgesia), even though the dose of opioids has increased. This is thought to be due to changes in your nerves and brain that make the paths that transmit pain signals more sensitive. This condition is most common with the use of morphine and hydromorphone. The best way to manage this is by lowering the dose of opioids or switching to a different type. Drugs that work on the NMDA receptor, like ketamine, methadone, and buprenorphine, are sometimes added to help manage this condition.
Consuming opiates might also result in severe constipation since they slow down the movement of food through the intestines. Eating more fiber and drinking more fluids can help manage this. Methylnaltrexone bromide, a drug that opposes the effects of opiates but does not affect the brain, can be used to treat this kind of constipation.
Potential Side Effects:
- Damage to the liver
- Serious gastrointestinal issues (bleeding, ulcers, perforation)
- Stroke, heart attack, kidney failure
- Opiate overdose
- Increased sensitivity to pain
- Physical and psychological addiction to opiates
- Severe constipation due to delayed gastric emptying and decelerated peristalsis
Preventing End-of-Life Evaluation and Management of Pain
Teaching patients and their family members is crucial for managing pain when a person is nearing the end of their life. Doctors should hold meetings with patients and their relatives to discuss the overall plans for care. This has been shown to strengthen family relationships and support mental health for those who are left behind.
During these talks, the main points would typically cover prescribed medications, possible side effects of these medications, potential toxicity, and any allergic reactions. If the patient isn’t able to communicate well or at all, it’s important to talk about what signs of pain to look out for.
If the family is thinking of bringing the patient back home, they will need guidance on how to care for him/her at home. Medical professionals should explain how to strike a balance between necessary procedures, like draining fluid using a tube (suctioning) and adjusting the patient’s position (turning), and ensuring the patient is comfortable and not in unnecessary pain. When everyone understands and agrees to the care plan, the need for hospital readmissions or emergency calls, which could cause further worrying, can be avoided.
