A Mental Health Overview: Facts, Myths and Challenges at End of Life Ariel Mindel, MC, LPC Mental Health America of

1. A Mental Health Overview: Facts, Myths and Challenges at End of Life Ariel Mindel, MC, LPC Mental Health America of Illinois

2. Presentation Topics • Introduction to Mental Health America of Illinois • Mental health and Mental illnesses • Prevalence, myths, treatment options • Mental Illness and the Dying Patient • Special considerations

3. About MHAI • Mental Health America of Illinois (MHAI) *Formerly Mental Health Association in Illinois • Statewide, non-profit organization founded in 1909 – Celebrated 100-Years of Service in 2009! • Mission is to promote mental health, work for the prevention of mental illnesses, advocate for fair care and treatment of those suffering from mental and emotional problems. • Engage in advocacy, education and information dissemination.

4. MHAI Focus Areas • Advocacy: • Mental Health Summit, Mental Health Education and Rally Day • Education • Prevention and promotion, educational presentations, mental health screenings, Social and Emotional Learning, disaster mental health trainers, stigma reduction • Information • Information and Resource line, referrals to providers, legal advocates, etc.

5. Mental health Mental Illness Viewing Mental Health

6. Prevalence Rates • In any given year, 25% of the American population will experience some form of mental illness • This holds true for youth • Main burden of illness concentrated on 6% of population • 50% of people who have a diagnosis, have more than one • 66% of people will not seek treatment due to stigma • In developed countries - burden of mental illness and substance abuse is greater than cardiovascular disease

7. Prevalence Rates In any given year, the percentage of the population 18 years of age and older experience the following mental disorders: • Mood Disorders (Major Depressive Disorder, Bipolar Disorder) • 9.5% • Anxiety Disorders (Generalized Anxiety Disorder, Panic Disorder, Post-Traumatic Stress Disorder, Obsessive Compulsive Disorder and Phobias) • 18% • Psychotic Disorders (Schizophrenia, Schizoaffective) • 1.1% • Eating Disorders (Anorexia Nervosa, Bulimia Nervosa) • 3%

8. Myths and Facts Myth #1: Psychiatric disorders are not true medical illnesses like heart disease and diabetes. People who have a mental illness are just "crazy." Reality #1: Brain disorders, like heart disease and diabetes, are legitimate medical illnesses. Research shows there are genetic and biological causes for psychiatric disorders, and they can be treated effectively. Myth #2: People with a severe mental illness, such as schizophrenia, are usually dangerous and violent. Reality #2: Statistics show that the incidence of violence in people who have a mental illness is not much higher than it is in the general population. Persons with mental and emotional disorders are more likely to be victims of crimes than perpetrators - they represent a vulnerable population.

9. Myths and Facts Myth #3: Depression results from a personality weakness or character flaw, and people who are depressed could just snap out of it if they tried hard enough. Reality #3: Depression has nothing to do with being lazy or weak. It results from changes in brain chemistry or brain function, and medication and/or psychotherapy often help people to recover. Myth #4: Depression is a normal part of the aging process. Reality #4: It is not normal for older adults to be depressed. Signs of depression in older people include a loss of interest in activities, sleep disturbances and lethargy. Depression in the elderly is often undiagnosed, and it is important for older adults and their family members to recognize the problem and seek professional help.

10. Myths and Facts Myth #5: Depression and other illnesses, such as anxiety disorders, do not affect children or adolescents. Any problems they have are just a part of growing up. Reality #5: Children and adolescents can develop severe mental illnesses. In the United States, one in ten children and adolescents has a mental disorder severe enough to cause impairment. However, only about 20 percent of these children receive needed treatment. Left untreated, these problems can get worse. Anyone talking about suicide should be taken very seriously. • Suicide is the 3rd leading cause of death for youth ages 15-19 and the 2nd leading cause of death for individuals ages 19-24

11. Categories of Mental Illnesses • Mood Disorders: • Major Depressive Disorder, Bipolar Disorder • Anxiety Disorders: • Generalized Anxiety Disorder, Panic Disorder, Post-Traumatic Stress Disorder, Obsessive-Compulsive Disorder, Phobias • Psychotic Disorders: • Schizophrenia, Schizoaffective Disorder • Eating Disorders: • Anorexia Nervosa, Bulimia Nervosa • Impulse Control Disorders: • ADHD, Conduct Disorder • Substance Abuse Disorders

12. Major Depressive Disorder • Persistent sad, anxious or “empty” mood • Sleeping too little or too much • Reduced appetite and weight loss or increased appetite and weight gain • Loss of interest or pleasure in activities once enjoyed • Restlessness or irritability • Persistent physical symptoms that don’t respond to treatment (such as headaches, stomachaches, chronic pain, constipation, etc.) • Difficulty concentrating, remembering or making decisions • Fatigue or loss of energy • Feeling guilty, hopeless or worthless • Thoughts of death or suicide

13. Bipolar Disorder • Episode of Major Depression, AND • Episode of Mania: • Increased energy: decreased sleep, little fatigue, increase in activities, restlessness • Rapid speech, incoherent speech • Impaired judgment: lack of insight, inappropriate humor, impulsiveness, excessive spending, grandiose thinking, hypersexuality • Changes in thought patterns: distractibility, creative thinking, flight of ideas, disorientation, racing thoughts • Mood changes: irritability, excitability, hostility • Psychosis: hallucinations, delusions, paranoia

14. Generalized Anxiety Disorder • Excessive, persistent worry about various areas of life - disproportionate to actual source of worry • Interferes with daily functioning (anticipate disasters, worried about health, money, death, family/friend problems, work, etc.) • Physical symptoms: fatigue, headaches, nausea, numbness, muscle tension, muscle aches, difficulty swallowing, difficulty breathing, difficulty concentrating, irritability, sweating, restlessness, difficulty sleeping

15. Treatment Options • Therapy - individual, group, family • Medication - monitored by psychiatrist or primary care • Research has found that a combination of both therapy and medication is the most effective form of treatment • Some illnesses may include a lifetime of treatment and management for the patient to find recovery

16. Mental Illness and the Dying Patient • People with severe and persistent mental illnesses (SPMI) have higher than average mortality rates • Adults with SPMI: 2:1 risk of dying from natural causes at any age, and at higher risk of death from neoplasms, cardiovascular, respiratory and GI illnesses • Also much higher risk of death due to accidents, suicide and homicide

17. Mental Illness and the Dying Patient: Decision-making Capacity • Decision making capacity and advance care planning: • Discussions about end-of-life often bypass people with SPMI - assumption of incapacity and fear of emotional reaction • May seek out family or substitute decision-makers • People with SPMI may be left out of decisions regarding their care, or decisions may be made for them that they would not have made • In certain states, statute of limitations exist around authority to implement certain forms of treatment by a guardian • i.e. administration of antipsychotics, ECTs, withholding of treatments that might save/prolong life, withdrawal of artificial nutrition/hydration

18. Mental Illness and the Dying Patient: Decision-making Capacity • Recent studies challenge beliefs about lack of capacity: • Foti & colleagues (2003-2005): Developed advance care planning tools to explore decision-making capacity, preference for advance care planning and preferences for end-of-life care • Individuals with SPMI provided hypothetical end-of-life scenarios, asked to select treatment choices imaginary individual and self • Also asked about values, opinions and attitudes concerning end-of-life • Choices made my SPMI population were similar to racial and ethnic groups with disparate access to care, quality of care, etc. • Conclusion: Tailored educational interventions can improve understanding to level falling within range of informed decision making capacity - and could tolerate discussions

19. Mental Illness and the Dying Patient:Access to Care • People with SPMI may experience/respond to symptoms differently or may delay seeking medical assessment • History may be difficult to elicit, track • Comorbid medical conditions often present • People with SPMI may have less access to cure-oriented treatment, and palliative care may become treatment from time of detection to diagnosis

20. Mental Illness and the Dying Patient:Access to Care • Factors such as medical and social problems, substance abuse, homelessness, incarceration, emotional/behavioral may make people with SPMI unwelcome in healthcare • Limited/distanced personal/family relationships • Fewer advocates, supports

21. Mental Illness and the Dying Patient:Provision of Care • Due to their history and illness, people with SPMI may be poor historians, may not be tolerated being touched, certain procedures or certain restrictions • Know the patient, consider their life experiences – stigma, institutional care, grief, trauma, etc. • Understanding/acceptance of diagnosis may fluctuate, may have different goals/beliefs about appropriate care • Is physical or chemical restraint appropriate? • Use periods of symptom remission to complete advance directives, discuss plans of care, and carry out physical exams, treat pain, etc. • Use active listening, provide interpersonal supports, advocate for the individual

22. Mental Illness and the Dying Patient:Recommendations • As much as possible, maintain consistency among care providers, staff education, and supervision, to maintain a unified team approach and ensure clear communication • Palliative care must be centered on the needs of the person with SPMI – a relationship based on respect, dignity, hope and non-abandonment • Cross-training in palliative care and mental health is recommended – a strong need exists for service integration and a multidisciplinary team • *Build relationships with local mental health providers and agencies to continually improve care and address the needs of your patients

23. Mental Illness and the Dying Patient:Newly Diagnosed Patients • Mental illnesses can often be comorbid with other physical illnesses – heart disease, stroke, diabetes, cancer, and Parkinson’s, etc. • A recent study found that 50% of patients with advanced or terminal cancer were suffering from anxiety, depression, or an adjustment disorder. • Less than half of these individuals received help they needed • Mental illness can compromise the quality of one’s life even more than the physical pain of the illness they are dying from • Depression is NOT a normal part of aging • Loss is inevitable, but depression should not be expected/accepted

24. Mental Illness and the Dying Patient:Newly Diagnosed Patients • Some individuals develop mental illnesses later in life, presenting with symptoms of depression, post-traumatic stress disorder (complicated by dementias), anxiety, psychosis, etc. • Healthcare workers need to familiarize themselves with various illnesses to become skilled at detecting symptoms early on • These illnesses are progressive and can worsen over time without treatment, patients can find recovery from mental illnesses if treated early • Choose appropriate treatment based on capabilities – Cognitive Behavioral Therapy may be appropriate/effective for the patient without cognitive deficits, vs. patients with dementia or cognitive deficits may be better treated through medication

25. Mental Illness and the Dying Patient:Family Members with Mental Illnesses • Areas of concern: • Emotional stability of family member • Coping ability • Potential guardianship issues • Access to continued care and treatment • Additional supports to assist family member in grieving process What other areas have you faced with family members with mental illnesses?

26. Resources www.mhai.org www.mentalhealthamerica.net Palliative Care for People with Severe Persistent Mental Illness: A Review of the Literature Woods, A., Willison, K., Kington, C., & Gavin, A. The Canadian Journal of Psychiatry, Vol 53, No 11, November 2008, p. 725-736.

27. Thank you! Ariel Mindel, MC, LPC Program Director of Public Education Mental Health America of Illinois amindel@mhai.org 312-368-9070 www.mhai.org