Psychosocial Aspects of Terminal Illness

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Objectives

• Identify services which may be needed to address terminal illnesses

• Define what constitutes a terminal illness

• Identify tools to help screen and monitor patients and families throughout the process

• Explore PACER needs and integrative approaches to care

Services

• Counseling

• Client alone

• Caregivers

• Client and caregivers

• Case Management for client and caregivers

• Support (clinical and peer)

• Supplies

• Food / medication

• Housekeeping

• Navigating the medical/ insurance systems

• Legal and financial issues

• After death

Conditions

• Aging

• Cancer

• Heart failure

• HIV

• Acute Illness (flu, sepsis)

• Alzheimers

• Other progressive illnesses (Lou Gehrig’s disease, COPD, organ failure)

Tools

• COMPASS

• National Comprehensive Cancer Network Distress Thermometer and Problem List

Physical

• Patient

• Pain and availability of palliative care

• Sleeping

• Nutritional support

• Medication side effects

• ADLs (mobility, bathing, toileting)

• Changes in responsiveness

• Caregivers

• Exhaustion

• Sleeping

• Physical requirements of caregiving

• Nutritional support (preventing low blood sugar and secondary effects)

Immediately Prior to Death

• Symptoms

• Confusion

• Drifting in and out

• Restlessness and agitation

• Attempting to removing clothing

• Crying out or moaning

• Sleeping a LOT or very little

• Breathing becomes irregular

• “Death Rattle” Coughing and noisy breathing are common as the body’s fluids accumulate in the throat. This breathing is often distressing to caregivers but it does not indicate pain or suffering

• Causes

• Pain

• Constipation/Urinary restriction

• Lack of oxygen

• Fear

Interventions

• Keep the patients safe

• Provide constant supervision (with a camera if the person wants to be alone)

• Always act as if the dying person is aware of what is going on and is able to hear and understand voices.

• Keep the room as peaceful as possible, or however the person wants it

• Talk in a calm voice

• Try to reassure the patient and address fears

Affective / Emotional

• Client

• Grief

• Anger (situation, physicians, “causes,” self, body, family and outside caregivers)

• Depression

• Embarrassment

• Guilt

• Anxiety (progression, unknown, survivors)

• Acceptance

• Family

• Grief

• Anger (situation, physicians, “causes,” outside caregivers, client)

• Examine multiple losses

• Depression

• Anxiety (progression, suffering)

Affective

• Coping may be either adaptive by reducing stress and promoting psychological adjustment or maladaptive preventing necessary adjustments

• Coping Strategies

• Seeking information

• Keeping busy / distress tolerance

• Redefining options/Examining alternatives / Create a win-win

• Expressing feelings

• Taking time away to recharge

• Getting support / synergize

• Mindfulness

• Purposeful action

Affective

• Antidepressant therapy is usually relatively well-tolerated

• Expert consensus statement recommends a low threshold for initiating treatment.

• Psychostimulants, SSRIs, and tricyclic antidepressants are the main pharmacologic treatment modalities for depression at the end of life.

• Sertraline, paroxetine, mirtazapine, and citalopram have demonstrated effectiveness for fatigue and depression in patients at the end of life

• Several studies document the effectiveness of