Refusing Needed Treatment: Ethics in Rehabilitation Medicine

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1 Refusig Needed Treatmet: Ethics i Rehabilitatio Medicie Arkasas Trauma Rehabilitatio 2017 Chris Hackler, PhD Professor Emeritus Divisio of Medical Humaities UAMS College of Medicie

2 The Cosesus The goal of treatmet is to fid the best balace of beefits over burdes i the available ad acceptable alteratives Limited by patiet prefereces Limited by available resources Limited by the eeds of others The goal is the same at the ed of life Treatmets may be withdraw if they o loger achieve the goal

3 Who decides? The patiet with decisio-makig capacity Patiet usually either does or does ot have capacity Advace directives should be hoored Oral directives are acceptable (documet) Family members or close persoal frieds decide for icapacitated patiets What would the patiet wat? What is best for the patiet?

4 I. What about Rehab? Choosig goals of treatmet Decisio-makig may be impaired by stroke, trauma, or other log-lastig causes Partial capacity may fluctuate accordig to mood, settig, time of day, ifluece of drugs Goals must frequetly be adjusted to accommodate lastig impairmet Despodet patiets may ot buy ito ambitious but realistic goals (<pateralism?)

5 Elizabeth Layto, Stroke (1978)

6 Icreased Pateralism? Persuasio of the despodet patiet Permaet impairmet produces depressio (ratioal vs. irratioal, treatable vs. utreatable) Overridig patiet s rejectio to ehace or restore competece: autoomy as a goal rather tha a priciple Creatig a ew self Developig ew values ad goals i partership (Whose Life Is It, Ayway?)

7 Role of the Family Acute care: tur to family oly if patiet is uable to decide; cosider oly patiet prefereces ad iterests Rehabilitatio: family cetrally ivolved Helpig compromised patiet set goals Ecouragig to work toward goals Providig care i home afterward Level of recovery ecessary for home settig Resources available to care for patiet

8 Implicatios of greater family role I acute care, patiet welfare is domiat Iterests of others are relevat but less compellig I log-term care ad rehab, family iterests assume greater importace Balacig of legitimate iterests (e.g. job) Assurig cooperatio to achieve goals

9 Cofidetiality Rule i all professios Wrog to tell secrets Cosequeces More iformatio eeds to be shared i settig goals ad matchig to resources Privacy still a basic value HIPAA still operative; so permissio eeded Iform cliet of ay limits

10 Advace Directives i Rehabilitatio Settig Hope for progress, ot aticipatio of reversal Nevertheless, all patiets should cosider ADs Not oly for frail elderly (Quila, Cruza, Schiavo) Some rehab patiets at risk for further, more acute stroke or ifarct (rush to ICU?) May suffer from multiple problems (e.g. diabetes, cardiac isufficiecy) Perhaps at exit iterview, if ot before If discharged to home, someoe should have power of attorey for health care

11 II. Istitutioal Ethics Committees Hospital ECs AMA 1985 AHA 1986 JCAHO 1992 Membership Medicie Nursig Pharmacy Allied health Social work Ethics Law Miistry Admiistratio Commuity

12 Hospital EC Fuctios Educatio Policy Cosultatio Whole committee Idividual cosultat Team

13 Code of Professioal Ethics for Rehabilitatio Couselors Adopted September 2016 Serves as guide to assist rehab couselors i resolvig ethical issues Available at Or by callig (847)

14 Some issues i Code Coflict of busiess ad professioal iterests Sexual miscoduct with cliets or studets Fraudulet use of credetials Failure to act as a cliet advocate Disparagig remarks about a cliet Iappropriate billig practices Use of a illegal substace Improper supervisio techiques

15 CCMC Code Coucil for Case Maagemet Certificatio Code of Professioal Coduct m-exam-portal/code-professioalcoduct-case-maagers

16 III. Challege to Rehab: the Miimally Coscious State

17 Cosesus i Law ad Ethics Competet patiet may refuse treatmet i a advace directive Family may exercise choice o behalf of icompetet patiet with o directive Family should: Decide as patiet would decide Choose what is best for the patiet Life-sustaiig treatmet ca be withdraw from a permaetly ucoscious patiet

18 Terry Schiavo 1990: heart attack (hypo-k), severe brai damage from lack of oxyge Neurologists diagose persistet vegetative state Husbad is surrogate uder FL law; he testifies she would ot wat feedig tubes Parets reject PVS diagosis, isist o cotiued feedig 2001: Fla. trial court agrees with husbad; appeals court affirms decisio; Fla. Supreme Court refuses to hear further appeal

19 Terry Schiavo (cot.) 2003: Feedig tubes removed secod time; Fla. Legislature passes Terri s Law ; Goveror Jeb Bush sigs bill; tubes reiserted Fla. Supreme Court ivalidates law as violatig separatio of powers 2005: Feedig tubes removed third time o March 18; U.S. Cogress passes emergecy measure; Presidet Bush flies i by helicopter to sig bill, makig a federal case of it U.S. District Court i Florida deies emergecy request to reisert feedig tubes; says courts decided properly; U.S. Supreme Court refuses to review March 31, 2005: Terry Schiavo dies 13 days after feedig tubes were removed

20 A similar case? Terry Wallis at home i Harriet, Ark.

21 Terry Wallis speaks with his mother Agilee before a doctor appoitmet o Jue 8, 2005 i Little Rock (ABC News file photo)

22 Terry speaks to his daughter

23 Popular misuderstadig As more ad more is leared about how the huma brai 'regeerates' itself, I believe that more people will come to realize just how evil, ad heartless, the public executio of the iocet brai-ijured Terri Schiavo really was. From a web log dated Ja 9, 2007

24 The differece is the diagosis: Permaetly ucoscious vs. miimally coscious

25 Degrees of Loss of Cosciousess Death: Permaet loss of cosciousess ad brai stem fuctio Coma: eyes closed, o respose to stimuli Vegetative state: wakeful, but o evidece of Reproducible or purposeful respose Laguage comprehesio or sese of self Miimally coscious state: resposes that are Episodic, icosistet, upredictable Capable of icreasig quality ad cosistecy

26 Sequece of recovery Coma (2-4+ weeks) => Persistet vegetative state => Permaet vegetative state or Miimally coscious state => Fuctioal commuicatio =>?????

27 Multi-society Task Force o PVS N. Egl. J. Med. 330(21): (1994) Coma lastig loger tha 30 days = Persistet Vegetative State Becomes Permaet Vegetative State With aoxic ijury: after 3 moths With traumatic ijury: after 12 moths

28 Joseph J. Fis, CONSTRUCTING AN ETHICAL STEREOTAXY FOR SEVERE BRAIN INJURY: BALANCING RISKS, BENEFITS AND ACCESS Nature Reviews Neurosciece 4, (2003); doi: /r1079 Figure 1 Widely varyig patters of restig metabolic activity observed i patiets i a chroic persistet vegetative state. A wide rage of regioal variatio i restig cerebral metabolic activity is observed i five patiets, icludig a uique patter of widely preserved metabolic activity i a patiet with overwhelmig ijury to the cetral mesodiecephalo (far left). Reproduced, with permissio, from Ref. 19 (2002) Oxford Uiversity Press.

Diffusio tesor images of brai at the first sca (left) ad 18 moths later (right). Color shows directio of white matter fibers, e.g., gree for aterior-posterior fiber tracts.

31 Diffusio tesor images of brai at the first sca (left) ad 18 moths later (right). Color shows directio of white matter fibers, e.g., gree for aterior-posterior fiber tracts. Large red area i secod sca (arrow) shows what scietists thik is growth of ew eural processes i a part of the brai that cotrols movemet. Weil Corell CitigroupBiomedical Imagig Ceter/Heig U. Voss.)

32 Terry i Rehab

33 Remaiig dilemmas Icidece ad prevalece ukow Estimated icidece: /millio i USA sustai severe traumatic head ijury each year The prevalece i USA estimated betwee 112,000 to 280,000 i adult ad pediatric cases Projected average lifetime/perso cost rages from $600,000 to $1,875,000 with a sigle reported cost of just i-hospital cost of $6,104,590 Neurology 2002;58:

34 Justice: allocatio of scarce resources

35 Bibliography Joh Baja, "Rehabilitatio medicie" i Bruce Jeigs (ed.) Bioethics (Gale, 2014). Ake-Maria Klei, et al "Rehabilitatio outcome of ucoscious traumatic brai-ijury patiets" i Joural of Neurotrauma 30(17), 2013 Julie Latcham, et al, "Physiotherapy for vegetative ad miimally coscious patiets: family perceptios ad experieces" i Disability ad Rehabilitatio 38(1), 2016 Guidelies for requestig a advisory opiio from the CRCC Ethics Committee ( V.M. Tarvydas ad R.R. Cottoe, 'The code of ethics for professioal rehabilitatio cousellors: what we have ad what we eed" (

36 Refusig Needed Treatmet: Ethics i Rehabilitatio Medicie Chris Hackler, PhD Professor Emeritus Divisio of Medical Humaities UAMS College of Medicie

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