Active Dying & Pain

Sadly, many people experience pain at the end of life. This is often a result of their underlying illness. For instance, an enlarging tumor in the abdominal cavity may cause pressure and pain in the affected area, or a malignant tumor may have spread to the brain, spinal cord or bone, causing intractable pain. In other cases, pain is a result of side effects of treatment, such as chemotherapy-induced peripheral neuropathy or severe constipation due to opioids. In still others, pain results from an underlying condition such as severe arthritis, which has been present for some time but has worsened as a result of inactivity, metabolic changes or psychological distress. 

In most instances, end-of-life pain can be effectively treated with appropriate medications such as opioids and anti-anxiety drugs. However, for a number of reasons, many patients who are nearing the end of life suffer needlessly from undertreated pain. This reality is borne out by multiple studies that have shown the prevalence of moderate to severe pain in people in hospice to be as high as 50%–60%. In cancer patients who are no longer receiving treatment, such as chemotherapy, that number is as high as 75%.

The reasons for the pervasive undertreatment of pain at the end of life are complex. Sometimes, patients and/or their families are afraid that strong painkillers, such as opioids may make the patient “worse.” Some even fear morphine may hasten death. Health care providers may also be hesitant to provide optimal pain control because they fear that giving escalating doses of strong medicines may slow the patient’s breathing and cause premature death. These fears, however, are not supported by science. Study after study has shown that providing effective pain control for someone who is dying improves their quality of life and has no effect on survival time. 

Failures of the health care system also play a role in undertreated pain. Hospice providers are often required to use only those drugs that are listed in their formulary, and overriding that mandate can be a huge hurdle that providers tend to avoid. Similarly, many insurers won’t pay for medication that isn’t on their approved list, especially costly, brand-name drugs. Or they may pay for only one form of a medicine, such as a pill, and refuse to cover a liquid form of the same drug. 

Other reasons for the undertreatment of pain in the dying are psychosocial in nature. For example, studies show that patients who don’t receive adequate pain control tend to be those who cannot effectively advocate for themselves. This includes the elderly, especially those with dementia, children, people with limited financial resources, and those who speak a language other than that spoken by their care providers. 

With that being said, every person has the right to die as comfortably as possible, and doctors and nurses have an ethical obligation to provide adequate pain control at the end of life. If your loved one is suffering from undertreated pain, ask your hospice provider to involve a pain management specialist in their care. These professionals can provide education and support to the patient, their family, and the health care team and make recommendations for interventions that will allow your loved one to experience a more comfortable death. 

Sources

“Peripheral Neuropathy”. American Cancer Society. https://www.cancer.org/cancer/managing-cancer/side-effects/pain/peripheral-neuropathy.html 

The pre-active phase of dying is a period of several weeks or perhaps a month that precedes death. 

During the preactive phase of dying, the body is beginning to shut down, and digestion, brain and kidney function begin to deteriorate. These functions typically slow down in a predictable pattern, says James Hallenback, a palliative care physician at Stanford University, in his book “Palliative Care Perspectives.” “First hunger and then thirst are lost,” Hallenback writes. “Speech is lost next, followed by vision. The last senses to go are usually hearing and touch,” he adds.  

Physical Signs of Pre-Active Dying

• Decreased food and fluid intake due to the natural diminishment of hunger and thirst
• Lower temperature and blood pressure
• Pale skin
• Difficulty swallowing, especially pills. Many people at this stage of dying need to take their oral medicines in liquid form. Medicines that are not indicated for comfort are usually stopped at this time.
• Decreased urine output and fewer bowel movements
• Swelling of the hands or feet due to diminished kidney function and the accumulation of fluid in the extremities. 
• Increased sleepiness, less interaction with loved ones
• Confusion, agitation or restlessness. This may include behaviors such as “picking” at the covers, thrashing about, or trying to get out of bed without help.
• Breathing changes. Breathing may initially be rapid and shallow or irregular and labored.
• Slow wound healing. The skin is particularly vulnerable during this time, and bedsores can happen seemingly overnight. Frequent turning, gentle massage and soothing skin lotions can help prevent the skin from breaking down. 

Behavioral and Cognitive Signs of Pre-Active Dying

The brain, like the rest of the body, doesn’t die all at once. As different parts of the brain begin to fail, the dying person may experience hallucinations or especially vivid dreams. It is not uncommon during this period for the dying person to say they have seen loved ones who already died or have “conversations” with the dead. Additionally, the person may:

• Verbally acknowledge that they are dying
• Ask to see family members and loved ones one last time. 
• Withdraw from those around them and seem to be “in another world”
• Speak incoherently, often to no one in particular
• Near death awareness — an acute sensitivity to the reality that death is near

These behaviors can be alarming to loved ones, but they are very common and merely signs that the brain is beginning to shut down. 

Additionally, some individuals will experience a period of decreased social interaction before the physical changes associated with pre-active dying begin. This is typically a time when the person begins to consider their mortality and accept that death is near. Many people begin to withdraw from friends and loved ones and may even refuse visitors during this time as they come to terms with the reality that their life is coming to an end. Some may perform a formal or informal life review, in which they recollect and evaluate important memories and events from their lives. As part of this process, some dying persons will also work towards a sense of closure by reaching out to loved ones to reconcile, express love and gratitude, ask for forgiveness, and to remedy old hurts. 

Sources

“Life Review and Life-Story Work”. The Encyclopedia of Adulthood and Aging. https://onlinelibrary.wiley.com/doi/full/10.1002/9781118521373.wbeaa209 

Morphine is a frequently prescribed medication for the treatment of end-of-life symptoms for terminally ill patients, has not been shown to hasten death when used appropriately. A comprehensive review of its use in research reports: “No studies have shown that patients’ lives have been shortened through the administration of appropriate pain medication.” Another study published in the Journal of the American Geriatrics Society shows that opioid use can increase quality of life, and possibly even extend it for some patients.

Nevertheless, the myth that morphine hastens death persists, both in the lay public and among healthcare providers. The reason for this is clear. Morphine and other opiates, when given in large doses, can cause respiratory depression, especially when therapy is first initiated.. Known in healthcare circles as the “double effect,” this forces physicians and prescribers into an ethical quagmire. “If I give the patient enough medicine to ease their pain, I may unintentionally cause side effects that shorten their life.” Further, despite the fact that ethicists agree that the foreseeable but unintended shortening of life is not a reason to withhold needed pain relief, it often results in the undertreatment of pain at the end of life. 

With that being said, research shows that patients in pain react differently to morphine than healthy people or people who use opioids to “get high.” Pain itself acts as an antagonist to respiratory depression; in other words, patients in severe pain are unlikely to experience morphine’s respiratory effects. Further, if morphine is initiated at a low dose and titrated according to patient symptoms, it has rarely been shown to affect respiration in a significant way. 

The Benefits of Morphine at End of Life

There is no “one size fits all” approach to the use of morphine for terminally ill patients. Patient safety is a concern when prescribing any pain reliever, as much as comfort or relief. This means physicians generally start patients on a low dose to minimize side effects while attempting to achieve a therapeutic goal. Depending on the person’s ability to swallow or severity of decline, morphine can be prescribed in tablet, capsule, liquid, suppository, or intravenous infusion forms. Dosage is continually reassessed by the hospice or palliative clinical team, and modifications are made according to patient outcomes or feedback.

Although morphine is not the only drug that can help reduce end-of-life symptoms such as pain and shortness of breath, it is preferred for a number of reasons. Some of these include: 

• It alleviates or lessens all types of moderate to severe pain effectively
• It is an effective treatment for shortness of breath, which can be both terrifying and debilitating
• It is inexpensive compared to other similar pain relievers
• The dosage can be easily adjusted to achieve adequate pain control
• Side effects such as itching, nausea, sedation and constipation usually can be easily managed 

Morphine, like all pain relievers, is most effective if therapy is initiated before pain becomes unbearable. In most cases, providers will order a maintenance dose to be administered every 2 to 4 hours “around-the-clock” and an additional dose in between for “breakthrough” pain.  

Side Effects Associated with Morphine

Like any medication, morphine can cause adverse effects. The most common side effects are constipation and nausea. Often additional medications are prescribed to relieve these symptoms if pain is otherwise managed well. In rare instances, someone may have an allergic reaction like hives, rash or swelling of hands, face, or mouth. In this case, alternative medication options are available.

Sedation is another potential side effect and one of the main reasons why patients or families refuse to utilize morphine when recommended. While the risk for sedation is inherent for all pain medications, starting the patient on a low dose with gradual increase can greatly reduce its sedative effects. It is important to alert the hospice or palliative team if sedation becomes apparent while taking the medication. The physician can lower the dosage and monitor the patient more closely. 

Other Fears About Morphine

Medical providers know that unwarranted fears about morphine can have a direct, negative impact on patient care. It is natural for patients or families to hesitate or ask questions when confronted with so many end-of-life care options. But irrational resistance can cause unnecessary pain for the patient. Struggling with severe pain or shortness of breath can cause adverse effects like elevated blood pressure, increased agitation or trouble sleeping. It can also result in severely diminished quality of life and a difficult death. 

While opioids are known to be addictive, they are considered a safe and effective treatment option when taken as prescribed by a doctor. Further, the risk of addiction is not an issue when a person is in the final stages of a terminal illness and actively dying. 

Cultural, ethical, or religious beliefs regarding palliative care may also cause aversions to symptom management. It is important to openly express concerns about the use of medications like morphine with family, trusted healthcare providers, or spiritual advisors.  

Sources

“Drug Fact Sheet: Morphine”. Get Smart About Drugs. https://www.dea.gov/sites/default/files/2020-06/Morphine-2020.pdf 

“Essays on Euthanasia and Physician Assisted Suicide”. International Association for Hospice and Pallative Care. https://iahpc.org/resources/publications/euthanasia-and-physician-assisted-suicide/essays-on-euthanasia-and-physician-assisted-suicide/ 

“Increasing opioid therapy and survival in a hospice.” Journal of the American Geriatrics Society. https://agsjournals.onlinelibrary.wiley.com/doi/10.1111/j.1532-5415.2007.01536.x 

“Respiratory Depression (Hypoventilation)”. Healthline. https://www.healthline.com/health/respiratory-depression 

“Opioid complications and side effects”. PubMed. https://pubmed.ncbi.nlm.nih.gov/18443635/ 

“Can pain cause high blood pressure?” Very Well Health. https://www.verywellhealth.com/can-pain-cause-high-blood-pressure-5208139 

“Agitation”. MedlinePlus. https://medlineplus.gov/ency/article/003212.htm 

“When pain interrupts your sleep”. WebMD. https://www.webmd.com/sleep-disorders/features/pain-and-sleep 

“How opioid use disorder occurs.” Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/prescription-drug-abuse/in-depth/how-opioid-addiction-occurs/art-20360372 

“The importance of cultural competence in pain and palliative care”. StatPearls. https://www.ncbi.nlm.nih.gov/books/NBK493154/ 

Although not everyone who is dying is in pain, treating end-of-life pain is a crucial part of comfort care. If your loved one is in hospice, they should already have received a thorough pain assessment and, if needed, a prescription for one or more medications for pain. These medicines generally fall into one of several categories:

• Opiates — pain relievers made from the poppy plant such as morphine and codeine
• Opioids — synthetic or man-made opiates such as oxycodone, tramadol, methadone and fentanyl
• Anti-inflammatories — drugs that decrease inflammation, such as steroids (prednisone, dexamethasone) and nonsteroidal anti-inflammatory drugs (NSAIDS)
• Anticonvulsants such as gabapentin (Neurontin) and pregabalin (Lyrica) for nerve pain
• Bisphosphonates for bone pain and prevention of fractures in patients with bone cancer
• Antidepressants such as amitriptyline, and venlafaxine for nerve pain

Many patients receive a prescription for a long-acting opiate such as morphine as well as a shorter-acting opioid for breakthrough pain. Depending on the source and nature of the pain, the doctor may also prescribe one or more of the non-opioid medicines mentioned above. Always give the medicines on the schedule recommended by your hospice provider. If your loved one is still in pain, contact your hospice nurse. They will generally adjust the dose and/or frequency of the medications or add another drug. 

Remember, too, that physical pain is only one dimension of suffering that can occur during active and preactive dying. Depression, anxiety and fear can cause significant distress and exacerbate physical discomfort a great deal. Many patients benefit from the addition of an anti-anxiety medication such as Ativan or Xanax. These medicines can also help alleviate muscle spasms, which can be a source of pain as well. 

Finally, keep in mind that many nonpharmacologic interventions are very effective at alleviating physical pain. Depending on your loved one’s level of consciousness and general physical condition, you may try any of the following, all of which have been shown to lessen discomfort at the end of life:

• Therapeutic touch and massage
• Essential oil therapy
• Reiki
• Music therapy
• Bedside yoga and meditation

Simply being present with your loved one, talking to them softly, holding their hand or putting a cool cloth on their forehead or lips can also be very soothing and help them relax, which can lessen physical discomfort and psychological distress. 

Sources

“NCI Dictionary of Cancer Terms: Opiate”. National Cancer Institute. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/opiate 

“Gabapentin (Gralise, Neurontin) – Uses, Side Effects, and More”. WebMD. https://www.webmd.com/drugs/2/drug-14208-8217/gabapentin-oral/gabapentin-oral/details 

“Pregabalin (Lyrica) – Uses, Side Effects, and More”. WebMD. https://www.webmd.com/drugs/2/drug-93965/lyrica-oral/details 

“Bisphosphonates: Mechanism of Action and Role in Clinical Practice”. Mayo Clinic Proceedings.  https://pmc.ncbi.nlm.nih.gov/articles/PMC2667901/ 

“Pain, Pain, Go Away”. Psychiatry (Edgmont). https://pmc.ncbi.nlm.nih.gov/articles/PMC2729622/ 

“Ativan vs. Xanax: What are the differences?” Medical News Today. https://www.medicalnewstoday.com/articles/325771 

One of the most difficult and frustrating things about caring for someone who can’t communicate is assessing their level of physical comfort. Although nonverbal clues are not always accurate, they may be all you have to go on in determining your loved one’s pain-control needs. According to a study published in the Journal of Palliative Medicine, signs that your loved one may be in pain include the following:

• Facial expressions, such as frowning, a wrinkled forehead, tightly closed eyes, grimacing, rapid blinking or a sad or frightened look

• Vocalizations such as sighing, moaning, groaning, calling out or calling for help
• Body posture and movements, such as rigid, tense muscles, guarding (not moving or physically protecting a particular body part), restlessness, rocking or decreased mobility
• Changes in interactions with others, such as withdrawal, aggression, resistance to care, combativeness or refusal to move 

Notably, blood pressure, heart rate and respirations were not reliable indicators that patients were in pain. 

If you believe your loved one is in pain, but they are unable to speak to you, you may be able to get them to communicate through nonverbal clues. If they are conscious or semiconscious, you can ask them simple yes-or-no questions and instruct them to blink their eyes or squeeze your hand to indicate a positive response. This approach may take some time, but it can be effective. First ask them if they are in pain (“Is something hurting you?”). Then try to pinpoint the problem by narrowing it down by body parts. (“Does your stomach hurt? Your head? Your back?” etc.) If you can discern what’s hurting, that information can be an important clue as to what you can do to help. Abdominal pain, for example, is often a sign that the person is constipated. In that case, giving them more opiates can actually make the situation worse. They may just need a laxative or an enema to relieve the discomfort they feel. 

If you can’t determine whether or why your loved one is hurting, it’s better to err on the side of caution and assume they are in pain. If they have an order for medicine for breakthrough pain, try giving them a dose and assessing their demeanor afterward. You can also try repositioning them, playing some soft music, dimming the lights and speaking to them in a soft, comforting voice. Physical pain is very often only part of the reason for a dying person’s distress. Helping your loved one to feel emotionally supported can be as effective as giving an extra dose of a painkilling drug. 

Sources 

“Assessing Pain in Nonresponsive Hospice Patients: Development and Preliminary Testing of the Multidimensional Objective Pain Assessment Tool (MOPAT)”. Journal of Palliative Medicine. https://pmc.ncbi.nlm.nih.gov/articles/PMC3114254/ 

“Breakthrough pain: definition, prevalence and characteristics”. PubMed. https://pubmed.ncbi.nlm.nih.gov/1697056/ 

Although pain is a relatively common symptom for those with advanced stages of terminal illness, dying is not always painful. As a matter of fact, the moment of death may prove to be a more positive experience than most people imagine. 

For example, in a study published in Science Direct, researchers examined what occurred in the brains of dying rats and found a threefold increase in levels of serotonin, a neurotransmitter that elevates mood. The researchers surmised that this surge of serotonin might help to ease fear or anxiety associated with the actual moment of death. 

Near-death experiences may also give us clues as to what happens in the brain as we die. While not predictive, they can provide insight into what might occur since those who live to tell about it were once considered clinically dead. Although no clear explanation exists to explain these phenomena, they rather consistently suggest that the moment of death is a transcendent and quite pleasant experience. 

All this notwithstanding, many people who are in the final stages of a life-limiting illness suffer moderate to severe pain. Pain may occur due to the disease process itself, or it may be related to other factors such as immobility and associated musculoskeletal pain. Psychosocial factors also influence the experience of suffering. Anxiety, fear, social isolation and preparatory grief may cause significant distress and exacerbate physical pain. 

Managing Pain in the Dying 

Pain is a subjective experience, and each person will respond to the physical, emotional and spiritual challenges of dying differently. But if pain is an ongoing symptom, appropriate pain management is crucial to ensuring that the dying person and their loved ones do not suffer unnecessarily. The best way to accomplish this is to enroll the dying person in hospice as soon as possible. Hospice providers are uniquely skilled in the assessment and treatment of pain at the end of life, and can assist the patient and their caregivers in finding the best pain management tools for their end of life experience.  

Sources 

“Elevation of brain serotonin during dying.” Science Direct. https://www.sciencedirect.com/science/article/abs/pii/S0304394011005234 

“Providing care and comfort at the end of life.” National Institute on Aging. https://www.nia.nih.gov/health/end-life/providing-care-and-comfort-end-life