10/22/2010 “They Don’t Look “They Don’t Look Disabled to Me!” Ethical Insights for Invisible Disabilities Disabled to Me!” (or) Humbling Lessons for a Bioethicist Ethical Insights for Ethical Insights for About Stuff I Thought I Understood While About Stuff I Thought I Understood While Invisible Disabilities Temporarily Able-Bodied Laura Shanner, PhD Laura Shanner, PhD John Dossetor Health Ethics Centre & John Dossetor Health Ethics Centre & School of Public Health School of Public Health University of Alberta University of Alberta October 15, 2010 Invisible* Disabilities “Somewhat Visible” Disabilities Chronic conditions that are rarely apparent to Chronic conditions that limit opportunities and others, but that impede function and reduce impair more of one’s life than the body quality of life systems or organs that others observe to be involved � * ‘observed’ is not always visual � You have to “live inside this body” to notice the � You have to live inside this body to notice the problem � Incontinence � COPD/asthma/heart disease � Often experiential rather than functional � Infertility � Chronic fatigue � Addictions � Compromised immune system � Chronic pain � Many mental illnesses, brain injuries No Longer T-A-B: Fibromyalgia Common Themes (Stuff I thought I knew) � Loss, Grief � Chronic myofascial pain across whole body � Opportunities, activities, successes, people � Prone to injury, slow to heal � Power of Diagnosis, Naming � Abnormal pain response � Chronic fatigue, non-restorative sleep � Not “real” until validated by an expert � “Sick role” “Si k l ” � Depression, anxiety, “fibro-fog” � Access to help � Prone to autoimmune, other comorbidities � Self-identity reshaped � Causes? � Roles, body image, hopes/fears � Neurological/CNS � Rheumatic � Stigma � Immune � Fear of having same fate 1
10/22/2010 Invisible Themes (I had NO idea!) Invisible Themes (I had NO idea!) � Loss, Grief � Self-identity reshaped � Opportunities, activities, successes, $, people � Roles, body image, hopes/fears � Losses denied by patient, others > overtaxing self worsens condition � Body still looks “normal” � Sacrifices, losses perceived as chosen rather than � No role models // age, visible impairment g , p consequences of condition f diti � Stigma � Power of Diagnosis, Naming � Not “real” until validated by an expert; sick role � Perplexed, annoyed rather than fearful � Accused of “faking it”, being weak � Sympathy more common when � Diagnosis may depend on whether a treatment is � Brought on self: “poor coping” avalable, rather than accessing Eleanor Stein MD, FRCP(C)Psych. Injuring the Invisibly Disabled � “It isn’t that bad” “Assessment and Treatment of Patients with ME/ CFS: Clinical Guidelines for � Can’t know another’s experience Psychiatrists” 2005 � It might actually be that bad today (or worse) � Reaction: defensive argument to persuade � Reaction: defensive argument to persuade � “ME/ CFS is not a psychiatric disorder” you it is that bad - wastes energy � Diagnosing co-morbid depression, anxiety � “Mind over matter” vs. symptoms in ME/ CSF � Only works if the material body can � Treatment and Empowerment guidelines respond to the mind � Burke clinic for the treatment of chronic pain and fatigue disorders � Chirpiness 2210 - 2nd St. SW Calgary, Alberta T2S 3C3 � cdnpsych@telusplanet.net Phases of Coping: Stein on Empowerment Patricia Fennell in Stein “ From a psychotherapeutic perspective, one � Phase 1: Crisis can observe a change in emotional status when the patient has the moment of � Phase 2: Stabilization realization that his/her opinions are as valid as anyone else’s, that s/he is not to blame for � Phase 3: Resolution his/her disorder and that s/he has value and rights despite being ill. From that point � Phase 4: Integration onwards patients cope better even if their physical condition or life circumstances do All four phases raise ethical questions not improve.” and insights that apply far beyond that phase, and even beyond disability 2
10/22/2010 Phase 1: Crisis Phase 1: Ethical Implications… � Occurs whether onset is sudden or gradual. � Universality: we are temporarily able May recur in cycles. bodied at best � Develops when one’s values, self concept, � Pain relief, therapeutic resources and life goals are called into question, i.e. you are too sick to function as you used to are too sick to function as you used to. � Practical assistance � The action goal is to batten down the hatches, take stock of resources, adjust expenditure and try to minimize immediate pain. A tool of phase one is to begin a personal narrative. � The spiritual goal of phase one is to learn to allow one’s suffering. Phase 1: Ethical Implications Phase 2: Stabilization � Occurs when one’s physical condition has � “Allow one’s suffering” stabilized somewhat due to the lifestyle � Validate other’s experience w/o changes one has made. comparison, judgment, evaluation � People in phase 2 continue to think they can � Support need for self-care � Support need for self care function as they used to and continue to function as they used to and continue to overestimate their personal resources. They � Support withdrawing if necessary, but have relapses as a result. never abandon another in distress � The action goal is to focus on what one really � Make room for suffering, vulnerability in needs. The tools of phase two are learning, language, pace, expectations, images restructuring and educating others. � Confront own tendencies to denial � The spiritual goal of phase two is to learn to regard your suffering with compassion. Phase 2: Ethical Implications… Phase 2: Ethical Implications… � Challenge expectations � Education � How much has to be done , and what can be left � Patient education about resources, undone? therapies, coping strategies, self- � Fair allocation of duties among (temporarily) assessement etc assessement, etc stronger/healthier and those less so � Educating others about existence, nature, � Priority setting: where to invest available energy, range of invisible disabilities concentration, etc � Education of all about ways to help, hinder � Redirecting: take advantage of strengths, talents instead of insisting on former / “normal” activities management � Social, institutional norms: How do competition, � Support for family, loved ones lifestyle, pace, etc. cause / worsen disability? � Divorce common in chronic illness, pain � Sue Wendell, The Rejected Body 3
10/22/2010 Phase 2: Ethical Implications… Phase 3: Resolution � “Regard suffering with compassion” � Grief work, the challenge to obtain insight and develop meaning in the face � Observe “how much effort you have to of huge losses. spend to do what I do without thinking” � Patients are more self reliant and self � Patients are more self reliant and self � It must really suck to go through this. � “It must really suck to go through this ” trusting with regard to health decisions. � “I’m sorry you’re struggling today” � Humor, play become possible again. � “I’m here with you, even if I can’t fully � The action goal is to stand for oneself understand what you’re going through” without apology. � The spiritual goal is to meet one’s suffering with respect. Phase 3: Ethical Implications… Phase 3: Ethical Implications… � Grief support � “Patients are more self-reliant and � “It sounds like your body has disappointed trusting with regard to health decisions” you” � NOT justification for challenging � “It just hit me how many things you’ve had j y g y competence, undermining informed competence undermining informed to give up” consent & choice! � Humor and Play � Support (do not demand) >> Can laugh and cry � Offer assistance, but don’t coddle Phase 3: Ethical Implications… Phase 3: Ethical Implications… � “Stand up for oneself without apology” � “Meet one’s suffering with respect” � Assumptions of control, responsibility for � ‘Respect’ means to embrace, accept the health status as well as productivity, entire human person, not just the parts we reliability, etc. like best like best � Feeling apologetic for how you ARE is � If we can meet suffering with respect, then devastating we have hope of achieving genuine � Alternative:” Look how well I’m doing with all respect for each other, ourselves that I’ve got to deal with!” � Are expectations unreasonable? (above) � Should apology come from those expecting, rather than those who “failed” to meet expectations? 4
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