Jerome Greenfield M.D. DFAPA Compassion Fatigue Family or loved one of seriously ill patient Nursing Staff Physicians Therapy and Social Services Staff Various Degrees of Impairment Mild symptoms of worry and doubt Moderate degree of impairment with noticeable signs of irritability, anxiety and/or dysphoria Severe psychopathology with vegetative signs and symptoms of Major Depression or severe Anxiety Up to 50% of caregivers may develop severe symptoms!! 1
Risk Factors Personal past Psychiatric history Family history of mental illness Personality style/ coping patterns Type of brain injury or other traumatic illness Substance abuse issues Support group of caregiver Ability to communicate with healthcare provider Highlights of Compassion Fatigue Physical, emotional, and mental exhaustion that may be accompanied by a change in attitude from positive and caring to negative and unconcerned Occurs when caregivers don t get the help they need or if they try to do more than they are able to do physically or financially May experience fatigue, stress, anxiety and depression Feelings of guilt if spend time on self WebMD Causes of Compassion Fatigue Neglect of self: emotional, physical and spiritual health Role confusion: caregiver vs. spouse Unrealistic expectations: expectation that their impact will be positive Lack of control: frustration over lack of money, resources and skills Unreasonable demands: Caregiver sees themselves as the exclusive provider WebMD 2
Signs and Symptoms Depression Withdrawal from friends, family, loved one Loss of interest in activities Feelings of hopelessness, despair Changes in sleep and appetite Feeling physically ill Thoughts of self harm or to loved one Problems with excessive guilt Problems with energy and concentration Signs and Symptoms Anxiety Increased heart rate Increased respiratory sxs ie. shortness of breath Increased blood pressure Increased muscle activity Decreased blood flow to extremities Increased sweating Increased brain activity; distraction, irritability Increased gastric activity Biological Consequences of Untreated Psychiatric Symptoms Hypothalamic Pituitary Adrenal Axis activation Messages sent to adrenal glands to secrete stress hormones Higher cortisol levels may increase blood pressure, cholesterol, stroke risk, glucose, cancer risk, and BRAIN INJURY!! Substance abuse with downward spiral into dysfunction and patient neglect 3
Treatment of Severe Symptoms Usually a combination of psychotherapy and psychotropic medication Some may require high level of care ie. in patient hospitalization or partial hospitalization Immediate intervention for an alternative care provider for the patient Family involvement TBI Caregiver Issues Shock and trauma to the caregiver different than with other illnesses as onset of trauma so acute and thus may be more serious ie. no time to prepare More unpredictable outcome Society lack of understanding of brain injury Complex array of biological, psychological, and social issues Difficulty providing personal care ie, bathing, grooming Legal issues Literature Studies Norup et al University of Copenhagen 2011 Investigate emotional well being of families of patients with severe TBI Patients had GCS score from 3 to 9 45 relatives studied 51% anxiety 69% depression 4
Learned Helplessness Sullivan et al 2012 Oregon Health and Science University LH: Psychological state of reduced motivation, poor decision making and depression and is a consequence of experiencing uncontrollable events 238 of 460 (51.7%) had significant scores Risk factors include lower educational level, absence of an advanced directive or DNR order and higher stress among family members LH may lead families to reason that outcomes are independent of their actions leading to poor decisions and avoidance Study of Diaries in ICU Setting Jones et al 2012 Whiston Hospital UK Tested whether providing a diary to ICU pts and families reduced PTSD Significant differences were seen between control and interventional groups The diary may clarify the ICU story, communicate about tx, and may allow relatives to journal feelings Meeting the Family Needs If family needs unmet, family unable to provide necessary support Nurses and other healthcare staff need to be observant Recognition of needs may lead to improved outcome Molter 1979 study, top needs: feel there is hope, personnel care about pt, waiting area close by, informed of change, know staff 5
Interventional Support Family conferences and daily meetings during critical care Open visitation including children and pets Allowing family to assist in care Written info or visual aids Learning names of family and good eye contact Questions answered honestly, understandably, Know facts and why things are being done Prevention Find someone you trust Set realistic goals and accept you need help Be realistic, especially if illness is progressive Time for self not a luxury but a necessity Talk to a professional; therapist, social worker, clergy Respite services Know your limits reality check Educate yourself on the illness Prevention New tools for coping; accentuate the positive Stay healthy; eating right, exercise, sleep Accept certain feelings; negative feelings are not abnormal Find a support group; empowering experience learning from peers 6
Where to Turn? Home health agencies Adult day care Nursing homes/ assisted living centers Private care Caregiver support services/ volunteers Local agency on aging S T O P S Seek out opportunities for support and guidance T Take time for the things you enjoy O Opt for help wherever you can, no matter what level of symptoms P Prioritize your needs, do what you need for you, not others Professional Caregiver Issues Missing work or mistakes at work Disruptive work behavior Patient neglect or abuse Substance abuse Physical impairment due to anxiety, sleep deprivation, mood issues 7
Help for the Professional Nursing Board Iowa Physicians Health Program Private healthcare options He who learns must suffer. And even in our sleep pain that cannot be forgot falls drop by drop upon the heart, and in our own despair, against our will, comes wisdom to us by the awful grace of God Aeschylus 8