TREATING PAIN IN PALLIATIVE CARE AND END-OF-LIFE CARE

Palliative care and end-of-life care involves specialized medical and nursing care for people with serious and/or life-threatening illness that focuses on providing patients with relief from pain, symptoms, and the stress of illness. Care is provided wherever the patient’s care takes place—the patient’s own home, care facility, hospice inpatient unit, hospital, or outpatient service. Such care is provided to patients regardless of age, prognosis, or length of time the care is needed. Palliative care is also part of hospice care given at the end of life.

As life expectancy increases because of advances in medicine and technology, there are more people expected to live longer with serious, chronic medical conditions, and many will reside in long-term care facilities where challenges for treatment of pain will include a lack of consistent assessment in persons with cognitive impairment as well as lack of recognition of the meaning of pain behaviors. This is significant, since patients consider unrelieved pain an important factor eroding dignity at the end of life.

Clinicians should assess pain frequently to avoid undertreatment and should maintain a low threshold for the conclusion that pain exists. Undertreatment of pain is more common for patients unable to speak for themselves. These include infants, children, and those who are developmentally or cognitively impaired. Other groups at risk for undertreatment are older adults, those with a past history of substance use disorder, those with limited social and economic resources, and those who do not speak the same language as their caregivers.

Pharmacologic Pain Management

Palliative care is used to manage a disease or medical condition that is serious or life-threatening by easing pain and other associated physical, emotional, or psychosocial symptoms. Palliative care may last for weeks, months, or years, and the relief of moderate to severe pain during that time can greatly improve the quality of life. By starting palliative care early, and by using the right type of pain management, nearly all pain problems can be relieved or reduced.

Pharmacology is the primary approach for pain management at the end of life, with opioid analgesics as the main treatment for moderate to severe pain. There are three important principles to keep in mind when deciding how to manage pain:

• Pain should always be treated right away; delay allows pain to worsen.
• Do not be concerned about the patient becoming addicted to pain medicine.
• Most pain problems can be controlled by using the step-care approach.

An effective guideline for administration of analgesics includes:

• Oral dosing of drugs whenever possible
• Around-the-clock administration rather than on-demand
• Prescribing analgesics according to pain intensity as evaluated by a pain severity scale
• Individualizing therapy, which presupposes that there is no standardized dosage in the treatment of pain
• Adhering to pain medication and dosing, as any alteration can lead to recurrence of pain
  (Johns Hopkins Medicine, 2022; Anekar & Cascella, 2022)

Palliative Sedation

In most patients, pain can be effectively and adequately relieved with opioids, but for some patients with advanced illness who have refractory pain, palliative sedation may be offered. Palliative sedation is a therapeutic intervention defined as the intentional use of sedating medication (typically a short-acting benzodiazepine) to reduce consciousness with the goal of eliminating suffering. It is a last resort aimed at inducing a state of decreased or absent awareness.

Palliative sedation may be utilized in both adults and children with terminal illness. It is most commonly used in the treatment of refractory pain, severe terminal dyspnea, agitated delirium, and convulsions.

When considering palliative sedation, the care team should also recognize the potential for family and staff distress. This is particularly true if there is concern regarding the effects and ethics of palliative sedation, disagreement regarding the treatment plan among providers, and in situations where the process is prolonged. All participating staff members must understand the rationale for sedation and the goals of care.

Although the data are limited, compared with patients at the end of life who did not receive palliative sedation, the use of palliative sedation does not appear to shorten survival. Family members must be informed that uncontrolled suffering at the end of life is a critical situation and that palliative sedation constitutes a proportionate and effective response that is within accepted medical guidelines. This form of care, following informed consent by the patient or surrogate, or by advance directives, poses no ethical problems (Cherny, 2021).

Barriers to Effective Pain Treatment at End of Life

Although clinicians have an ethical obligation to reduce pain and suffering, barriers remain regarding appropriate and adequate pain in palliative and end-of-life care. Such barriers may include:

Patient and family issues:

• Lack of reporting of pain or denial of pain due to its link with deterioration (a sign of the progression of the disease)
• Difficulty in accepting the prognosis
• Misconception that pain is a natural part of being ill and cannot be relieved or avoided
• Stoicism
• Fears and concerns about pain medication, side effects, substance abuse, and/or addiction

Clinician issues:

• Lack of knowledge, skills, and time for adequate pain and symptom assessment
• Not utilizing an assessment scale for the special needs of each patient
• Lack of understanding about the global nature of pain (e.g., psychological, social, spiritual, and cultural aspects)
• Prejudice against a particular group or the use of stereotypes to categorize a particular patient, or particular illness as not having pain
• Fear of doing harm or causing adverse effects, including tolerance to opioid effectiveness
• Fear of the patient becoming addicted
• Concerns about diversion or misuse of drugs by other than the patient
• Failure to include effective nonpharmacologic measures
• Tendency to under assess pain and under treat pain in certain groups like older people or children
• Fear of legal issues

Healthcare system issues:

• Restrictive formularies, limited access to opioids, or cost prohibitions that prevent appropriate treatment
• Limited insurance coverage for many effective nonpharmacologic treatments
• Lack of availability of adequate pain education and resources for challenging pain cases
  (CARESEARCH, 2021)