S. B. is an 80-year-old female with stage IV breast cancer and metastasis to the bone. She is not a candidate for chemotherapy or radiation and has elected to remain at home without further treatment for her disease. She is being followed by a home hospice agency. For several months, S. B. has been taking morphine sulfate sustained release (MS Contin®) 90 mg orally every 12 hours and ibuprofen 200 mg orally every 8 hours to manage low back pain. She occasionally takes morphine sulfate immediate release 30 mg for breakthrough pain. Otherwise, MS Contin and ibuprofen control her pain well.

For the past 3 days, S. B. has been extremely weak and fatigued, incontinent of urine, and sleeping most of the day and night. When she is awake, she has no desire to eat. The hospice nurse informs the family that the signs and symptoms indicate that her body may be slowing down and that she is likely near death. Given this change in her clinical condition, someone in the home will need to take on the role of managing her medications so that she remains comfortable until death.

T. C. is a 74-year-old female with severe chronic obstructive pulmonary disease (COPD), cor pulmonale, osteoporosis, and arthritis. She is dependent on home oxygen and oral steroids. Other medications include diuretics, nonsteroidal anti-inflammatory drugs (NSAIDs), multiple bronchodilators, and respiratory medications. She states that she wants to avoid further hospitalizations for her disease, does not want to be intubated or resuscitated, and that she has a living will and durable power of attorney for
health care in place. She is currently being followed by a registered nurse from the transitional care department of a home hospice agency.

For 5 days, T. C. has been on oral antibiotics for acute bronchitis, but her overall condition has steadily declined. Today she is lethargic, unable to stand, and having difficulty swallowing her medications. The home care nurse discusses T. C.’s condition with her, her family, and her physician, and they develop a plan of care.

The literature indicates that unrelieved pain is one of the most common causes of somatic distress in the months, weeks, and days before death. Most of what is known about symptoms in individuals near death has been derived from studies on patients with cancer. However, many individuals die from other chronic diseases that are also capable of causing pain and discomfort.

Approximately two-thirds of patients with advanced cancer have moderate to severe pain. Pain in patients with cancer may result from tumor involvement, cancer related procedures or treatment, or causes unrelated to the cancer or its treatment. Most chronic pain in people with cancer is related to tumor involvement, with bone pain and compression of neural structures the most common causes. Clients with cancer may experience pain throughout the course of their disease. In some situations, treatments such as radiation or chemotherapy can be given to reduce tumor size, resulting in a decrease in pain intensity. Medication, however, is the mainstay of treatment for chronic cancer pain, and the medication is generally given for life to prevent pain from recurring. Adjustments in medication are made if the intensity, frequency, or character of pain changes over time.

The healthcare and lay communities are familiar with the fact that cancer is often a terminal disease. Healthcare providers also demonstrate an understanding that pain occurs in clients with cancer and that analgesia for pain, especially in advanced disease, is appropriate. It is questionable, however, how often healthcare providers utilize prognostic indicators for other chronic, life-threatening diseases and how well symptoms such as pain are treated in clients with noncancer diagnoses near death.

The hospice movement has done a great deal to educate people about the process of death and dying, and the need to provide quality end-of-life care. Although the majority of clients receiving hospice services have
historically had a cancer diagnosis, hospice and other palliative care services are not limited to clients with cancer. The National Hospice and Palliative Care Organization has published prognostic guidelines to help identify when individuals with chronic disease other than cancer are in the terminal phase of their disease. Prognostic indicators exist for renal failure, COPD, end-stage cardiac disease, amyotrophic lateral sclerosis, dementia, and acquired immunodeficiency disease (AIDS). Such indicators are not meant to emphasize the negative aspects of chronic disease. Instead, they are meant to assist healthcare providers in identifying individuals who would likely benefit from services that promote quality end-of-life care. Despite the availability of these and other measures of prognoses, they are underutilized in guiding treatment at the end of life. As a result, many individuals near the end of their lives are not provided with quality palliative care, and they risk dying in pain. Such were the findings of the 1995 Support Study, which looked at factors impacting care for hospitalized adults at the end of life. When death nears, adults with cancer are likely receiving long-acting narcotics to control severe pain. Clients without cancer are less likely to be treated for severe pain and less likely to receive narcotics, particularly long-acting formulas. Because many of these clients are narcotic naïve (that is, do not routinely take narcotic medications), it is likely they will not require the high doses of narcotics that clients with chronic cancer pain require. In fact, clients dying from a cause other than cancer may achieve comfort from pain with non-narcotics and nonpharmacological approaches to pain. What is imperative is that the pain is assessed and treatment is offered, regardless of the etiology. Too often, however, pain is not assessed, particularly in people who become lethargic, which often occurs prior to death. Perceived risks of medications for pain, such as respiratory depression and lethargy, also act as barriers to treatment.

The risk that pain will continue or recur and the loss of ability to rely on client reports mandate that medication regimens controlling cancer pain continue to be given to dying clients until death occurs. (The exception to this is a patient with diminished hepatic and renal function with no urine output, who is receiving routine dosing or a continuous infusion of morphine. Metabolites of morphine may remain active as analgesics in the body and accumulate, risking morphine toxicity and delirium. In this case morphine may be decreased). When clients can no longer report pain, alternate methods of assessing pain need to be performed. These include assessment of nonverbal pain behaviors.

Just as decreasing or eliminating analgesic medications in a client with cancer who is near death is generally not appropriate, it is not appropriate to eliminate analgesic medications in clients near death from a nonmalignant disease. It is not always clear, however, when a client is near death, and signs and symptoms such as a decreased level of consciousness may be falsely attributed to narcotics. In situations where the etiology of a decreased level of consciousness in a client with a life-threatening illness is not clear, the nurse or physician may be tempted to decrease or withhold narcotics to assess their role in the change of mental status. The nurse or physician should know, however, that clients who have not had recent increases in their narcotics are likely tolerant to the sedating effects of narcotics, and the narcotics are probably not the cause of their change in mental status.

Discussion and establishment of the goals of treatment in a client with chronic disease and pain who may be near death should preclude withdrawal of analgesic medications. If the patients’ goal is relief of pain,
sedation or other side effects of effective medications are often acceptable Failure to provide adequate treatment to relieve pain is not.

The most notable difference in the treatment of pain at the end of life for clients with both malignant and nonmalignant disease is that patients with cancer are more likely to receive narcotics to prevent their pain, often in the long-acting form. Patients with non-malignant pain are more likely to receive non-opioid analgesics, most likely in the short-acting form.