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 methylphenidate in patients with cancer or HIV to address low energy and apathy
• Cochrane review concluded that there is no systematic evidence of the effectiveness of pharmacologic treatment of anxiety in the palliative care setting
Cognitive
• Identify what the client and family already know about the prognosis and whether there are gaps and doubts to be resolved
• Diagnosis: Nature, extent, trajectory
• Meaning and impact of illness
• Explanation of symptoms
• Handling of emergencies
• Financial concerns
• Legal issues
• Death and dying
• Options (DNR, burial/cremation/donation)
• Process (see physical)
Cognitive
• Intra-family conflict situations call for a family reunion with the health team to negotiate with the family: Respecting the patient's wishes and establishing a consensual plan of actions
• It is important to make written notes of the points discussed and the agreed plan
Cognitive Interventions
• Counseling strategies that combine emotional support, flexibility, appreciation of the patient’s strengths, warmth and genuineness, life-review and narrative therapy, and exploration of fears and concerns
• Unpleasant or threatening thoughts (diagnosis, death, suffering)
• Examine the FACTS
• Consider all aspects of the situation (what you DO have; what options ARE available)
• Examine the PROBABILITY vs. possibility
Environmental
• Continuity of care
• Structure and process of care
• Supplies and accommodations for client and caregivers
• Community resources (Shopping, cleaning, transportation)
• Pay attention to sensory stimuli
• In the hospital / LTC facility
• At home
Relational
• Community support
• Peer support
• Spiritual guidance
• Willingness to accept help: You cannot do everything yourself
• Let others share the load for the dying person, for you, for themselves
• Increased desire to have loved ones close (or not)
• Not wanting people to be around (no energy; remember me as I was; not wanting to impose)
Children and Death
• Children respond to death:
• Denial, shock and confusion
• Anger and irritability
• Inability to sleep or nightmares
• Loss of appetite
• Fear of being alone
• Physical complaints, such as stomachaches and headaches
• Loss of concentration
• Guilt over failure to prevent the loss
• Emphasize that it wasn’t their fault.
• Depression or a loss of interest in daily activities and events
• Regressive behaviors
• Withdrawal from friends
• Excessively imitating or asking questions about the deceased or making repeated statements of wanting to join the deceased
• Inventing games about dying
Children and Death
• Don’t try t o protect them from grief
• Communicate in concrete developmentally appropriate ways
• Let children discuss their fears and educate when possible
• Validate feelings
• Provide choices about how to memorialize the person and express their feelings
• Be sensitive that they may not want to talk or think about the deceased because it is too painful.
• Explain the person loved them and would want them to be happy.
• Remind your child that not everyone who gets sick will die.
• Reassure him of your health.
• Let him know how many people in his life care for him.
• Take care of yourself and make sure you have support.
Resources / References
• https://www.sciencedirect.com/science/article/pii/088539249190068F
• Psychological Issues in End-of-Life Care by Susan D. Block MD Journal of Palliative Medicine
• Assessment Tools for Palliative Care
• Clinical Practice Guidelines for Quality Palliative Care
Summary
• End of life care often involves multiple providers, the client and caregivers
• It is essential to consider all biopsychosocial needs with a focus on integrative care
• “Stress” and distress will increase HPA-Axis activation, impair sleep and immunity and contribute to worsening of health and wellbeing of both the patient and caregivers.
• Children will need different approaches depending on their developmental level.