Palliative Care, End-of-Life Care, and Pain Management

Learning Outcomes for Palliative, End-of-Life, and Pain Care

• Understand the nature of pain and how it is assessed and managed in palliative and end-of-life (EOL) settings.
• Describe the philosophy of a palliative approach to care.
• Describe and compare various theories and models of grieving.
• Describe nursing management of common physical and psychosocial manifestations at the end of life.
• Discuss key ethical and legal issues related to palliative and end-of-life care.
• Discuss the special needs of nurses who care for dying patients and their families.
• Consider ways to improve palliative care for Indigenous people.
• Understand the concept of integrative healthcare and its application in palliative and end-of-life care.

Definitions and Magnitude of Pain

• Definitions of Pain:
  • Subjective Definition: "Whatever and whenever the person experiencing pain says it is."
  • Sensory/Emotional Definition: "Unpleasant sensory and emotional experience associated with actual or potential tissue damage."
  • Pain is multidimensional and entirely subjective; the patient's self-report is the most essential tool for assessment.
  • Pain is not synonymous with suffering.
  • Assessment challenges exist for patients who are non-verbal or cognitively impaired.
• Epidemiology and Statistics (Magnitude of the Problem):
  • Unrelieved persistent pain is considered an epidemic in Canada.
  • Over $50,000,000$ people in Canada and the United States suffer from musculoskeletal pain (e.g., back pain, arthritis) that has gone unrelieved for $5$ years or longer.
  • In Canada, pain is one of the $4$ most common causes of disability among individuals aged $24$ to $64$ years.
  • Persistent pain affects up to $65\%$ of older persons living in the community and up to $80\%$ of those in long-term care facilities.
  • Indigenous people in Canada experience the highest prevalence of persistent pain.
• Consequences of Untreated Pain:
  • Unnecessary suffering, physical dysfunction, and psychosocial distress.
  • Impaired recovery from acute illness or surgery.
  • Immunosuppression and sleep disturbances.
• Barriers Among Healthcare Providers (HCPs):
  • Inadequate skills for assessment and treatment.
  • Misconceptions about pain and inaccurate information regarding opioid addiction and adverse effects.

The Multidimensional Nature and Physiology of Pain

• Five Dimensions of Pain:
  • Physiological: Transmission of nociceptive stimuli.
  • Sensory: Pain perception.
  • Affective: Emotions and suffering.
  • Cognitive: Beliefs, attitudes, evaluations, and goals.
  • Behavioural: Behavioural responses to pain stimuli.
• The Four-Step Pain Process:
  • 1. Transduction: Noxious stimuli cause cell damage, releasing sensitizing chemicals including Prostaglandins, Bradykinin, Serotonin, Substance P, and Histamine. These substances activate nociceptors, generating an action potential.
  • 2. Transmission: The action potential travels from the site of injury to the spinal cord, from the spinal cord to the brainstem and thalamus, and finally from the thalamus to the cortex for processing.
  • 3. Perception: The conscious experience of pain.
  • 4. Modulation: Neurons from the brainstem descend to the spinal cord, releasing substances like endogenous opioids to inhibit nociceptive impulses.

Classification and Assessment of Pain

• Classification by Underlying Pathology:
  • Nociceptive Pain: Results from damage to somatic or visceral tissue (e.g., surgical incision, broken bone, arthritis, cardiac ischemia). Usually responsive to opioids and non-opioids.
    • Somatic Pain: Aching/throbbing, localized; arises from bone, joint, muscle, skin, or connective tissue.
    • Visceral Pain: Arises from internal organs (intestine, bladder); may result from tumour involvement or obstruction.
  • Neuropathic Pain: Results from damage to peripheral nerves or the Central Nervous System (CNS). Characterized as burning, shooting, stabbing, or electrical. It can be sudden, intense, or lingering and is often difficult to treat. Management requires opioids, antiseizure, and antidepressant medications.
• Classification by Duration:
  • Acute Pain: Short-term.
  • Persistent (Chronic) Pain: Long-term.
• Assessment Goals and Components:
  • Describe the patient’s experience across sensory, affective, behavioural, cognitive, and sociocultural dimensions.
  • Identify goals for therapy and strategies for effective self-management.
  • Assess effects on sleep, daily activities, relationships, and emotional well-being.
  • Include past pain experiences, the personal meaning of pain, and current control strategies.
• Indigenous Considerations:
  • Awareness of high persistent pain rates and potential discrimination (e.g., false assumptions of substance misuse).
  • Importance of understanding historical social issues to provide culturally sensitive care.

Pain Treatment Principles and Medication Therapy

• Basic Principles:
  • Routine assessment is mandatory.
  • Self-report should be prioritized.
  • Unrelieved acute pain complicates recovery.
  • Interventions should use a combination of pharmacological and non-pharmacological therapies.
  • Patient and caregiver teaching is a cornerstone of the treatment plan.
• Pharmacological Ladder (Analgesic Selection):
  • Step 1 (Mild Pain): Non-opioid analgesics (e.g., Ibuprophen, Acetaminophen, ASA).
  • Step 2 (Mild to Moderate Pain): Opioid analgesics or mixed opioid/non-opioid analgesics (e.g., codeine, tramadol).
  • Step 3 (Moderate to Severe Pain): Strong opioids (e.g., morphine, fentanyl, dilaudid).
  • Adjuvants: Used alongside analgesics (e.g., Corticosteroids, antidepressants, muscle relaxants, anaesthetics).
• Nursing Responsibilities in Medication Therapy: Administration, assessment, evaluation of effectiveness and adverse effects, documentation, and advocacy for medication changes.
• Non-pharmacological Therapies: Massage, exercise, Transcutaneous Electrical Nerve Stimulation (TENS), heat therapy, cold application, and cognitive techniques (distraction, relaxation, self-management).

Barriers and Biases in Pain Management

• Definitions of Common Concerns:
  • Tolerance: A state of adaptation where drug effects decrease over time; it is not addiction.
  • Physical Dependence: A pharmacological effect where abrupt cessation or rapid dose reduction produces withdrawal; it is not addiction.
  • Substance Misuse (Addiction): A neurobiological disease influenced by genetic and environmental factors. Characterized by impaired control, compulsive use, continued use despite harm, and craving.
• False Biases and Misconceptions:
  • False: People who misuse drugs overreact to discomfort.
  • False: Tissue damage accurately indicates pain intensity.
  • False: Health care providers are the best authorities on a patient's pain.
  • False: Psychogenic or chronic pain is not "real."
  • False: Patients who cannot speak do not feel pain.
  • False: Infants cannot experience pain.

Age-Related and Special Population Considerations

• Pain in Older Persons:
  • Primarily musculoskeletal. Often inadequately treated due to the belief that pain is an "inevitable" part of aging.
  • Older patients may use terms like "aching" or "soreness" instead of "pain."
  • Physiological Changes: Decreased muscle mass, increased body fat, and decreased body water leads to higher concentrations of water-soluble drugs (e.g., morphine) and higher distribution volumes for fat-soluble drugs (e.g., fentanyl).
  • Protein Binding: Low serum albumin levels lead to more unbound active medication, increasing toxicity risk.
  • Metabolism: Declined hepatic/renal function results in slower metabolism, longer drug duration, and greater peak effects.
  • Treatment Cautions: Higher risk for GI bleeding with NSAIDs (use Acetaminophen instead). Polypharmacy increases interaction risks. Titrate medications slowly to avoid exacerbating cognitive impairment or ataxia.
• Special Populations:
  • Cognitively Impaired: Behavioural and physiological changes may be the only pain indicators.
  • Substance Use Problems: Requires interprofessional care to manage pain while minimizing withdrawal symptoms.

Philosophy of Palliative and End-of-Life Care

• Palliative Care Definition: An approach that improves quality of life through prevention and relief of suffering via early identification and treatment of pain (physical, psychosocial, and spiritual).
• Core Goals:
  • Provide relief from symptoms and pain.
  • Regard dying as a normal process.
  • Neither hasten nor postpone death.
  • Support patients to live actively and support families during bereavement.
• Integrative Palliative Approach: Focuses on the full range of needs throughout all stages of illness, not just the very end.
• End-of-Life (EOL) Care: Specifically refers to care during the last months, weeks, and days of a life-limiting illness.
• Hospice Palliative Care: Utilizes a shared-care model and interprofessional teams.
• Palliative Performance Scale (PPSv2) Levels:
  • $100\%$: Full ambulation, normal activity, full self-care, normal intake, full consciousness.
  • $70\%$: Reduced ambulation, unable to perform normal work, significant disease, full self-care.
  • $40\%$: Mainly in bed, unable to do most activity, extensive disease, mainly assistance required, full/drowsy/confused consciousness.
  • $10\%$: Totally bedbound, total care, mouth care only, drowsy/coma.
  • $0\%$: Death.

A Dying Person’s Bill of Rights

• Right to be in control and treated as a living human being until death.
• Right to maintain hopefulness and have a sense of purpose.
• Right to express emotions regarding approaching death and have spiritual needs respected.
• Right to participate in care decisions and expect continuing medical/nursing attention even when goals shift from cure to comfort.
• Right not to die alone and to die in peace and dignity.
• Right to have questions answered honestly and not be deceived.
• Right to be cared for by sensitive, knowledgeable people.

Physical Manifestations of the Dying Process

• Sensory System:
  • Hearing: Usually the last sense to disappear.
  • Taste/Smell: Decrease with disease progression.
  • Sight: Blurred vision, sinking/glazing of eyes, absent blink reflex.
• Integumentary System: Mottling on extremities; cold, clammy skin; cyanosis on nose, nail beds, and knees; "waxlike" skin near death.
• Respiratory System: Increased rate, then irregular breathing; Cheyne-Stokes respirations; "terminal secretions" (grunting, gurgling, or noisy wet breathing caused by inability to clear secretions).
• Urinary System: Gradual decrease in output, incontinence, or inability to urinate.
• Gastrointestinal (GI) System: Loss of appetite/thirst; slowing of digestion/gas accumulation; nausea; loss of sphincter control; bowel movement may occur at death.
• Musculoskeletal System: Increasing weakness; loss of ability to move; sagging jaw (loss of facial tone); difficulty speaking/swallowing; loss of gag reflex.
• Cardiovascular System: Initial increase in heart rate followed by slowing/weakening pulse; irregular rhythm; decreased blood pressure; delayed absorption of IM/SubQ drugs; peripheral edema.

Psychosocial Care and Manifestations

• Common Manifestations: Anxiety regarding unfinished business, altered decision-making, fear of loneliness/pain/meaninglessness, life review, restlessness, withdrawal, and vision-like experiences.
• Nursing Management:
  • Anger: Nurses must understand its source and not take it personally.
  • Hopelessness/Powerlessness: Support autonomy and involvement in decision-making.
  • Four Specific Fears: Pain, Shortness of Breath, Loneliness/Abandonment, and Meaninglessness.
  • Communication Techniques: "Ask-tell-ask," "tell me more," active listening, and silence.

Grief, Bereavement, and Mourning

• Definitions:
  • Grief: Normal reaction to loss (psychological and physiological).
  • Anticipatory Grief: Occurs before the actual death.
  • Bereavement: The state of loss and period of mourning after death.
• Kübler-Ross Model of Grief:
  • Denial: "No, not me."
  • Anger: "Why me?"
  • Bargaining: "Yes, me, but…"
  • Depression: "Yes, me, and I am sad."
  • Acceptance: "Yes, me, but it is okay."
• Worden’s Tasks of Mourning:
  • Task #1: Accept the reality of the loss.
  • Task #2: Work through the pain of grief.
  • Task #3: Adjust to an environment where the deceased is missing.
  • Task #4: Find an enduring connection with the deceased while embarking on a new life.

Ethical, Legal, and Post-Mortem Care

• Medical Assistance in Dying (MAiD): Distinct from palliative sedation.
• Palliative Sedation: Intentional sedation to relieve intractable suffering in final days; the goal is comfort, not hastening death.
• Advance Care Planning: Decisions regarding organ donation, advance directives, CPR, and Allow Natural Death (AND) vs. DNR (Do Not Resuscitate).
• Post-Mortem Care Procedures:
  • Check for special orders/specimens; ask if the family wants to participate.
  • Remove equipment/tubes (unless coroner case or organ donation).
  • Cleanse body, brush hair, close eyes, and insert dentures for facial alignment.
  • Cover body to chin with a clean sheet, arms outside.
  • Document all personal belongings with specific descriptors and names of recipients.
  • Apply name tags and maintain sensitivity during transport.

Special Needs of Nurses and Family Caregivers

• Caregiver Support: Monitor for abnormal grief (dependency, inability to express feelings, concurrent life crises). Encourage self-care and use of support groups.
• Nurse Self-Care:
  • Recognize personal feelings andcknowledge what cannot be controlled.
  • It is acceptable to cry with the family.
  • Address feelings of helplessness, guilt, or frustration.
  • Coping strategies: Hobbies, scheduling time for self, ensuring sleep, and maintaining peer support systems inside and outside work.