Ethics in Practice: Participants will be able to: Frameworks. Ethics & decisions. Paula Leslie October what can we learn from the end of life?

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1 Ethics & decisions Ethics in Practice: what can we learn from the end of life? Participants will be able to: Explain differences: values, morals, ethics Discuss medical ethical principles Integrate frameworks that support robust & ethically sound decision making Frameworks

2 Ethics & decisions Why? Ethics ethics, morals & values Evidence why ebp? Compliance why do people refuse to listen to our wisdom? Values Individual rules for decisions Right & wrong Should & shouldn't Good & bad Rank importance Trade meeting one value or another ChangingMinds.org (2008) Morals Society's standards: right & wrong More about good & bad than other values Judge others on morals Immoral person but no word for not respecting values Tend to be externally imposed ChangingMinds.org (2008)

3 Ethics & decisions Ethics Professional morals? Formal system or rules Explicitly adopted by group medical ethics Internally defined & adopted ChangingMinds.org (2008) Medical ethical principles Autonomy Beneficence Nonmaleficence Justice Autonomy Respect another s worth & right to make choices

4 Ethics & decisions Beneficence Take positive action to do good for others AND act to prevent or remove harm Nonmaleficence Avoid causing harm Justice Provide what patients need in fair & equitable manner

5 Ethics & decisions Evidence Based Practice Clinical Expertise Patient Preference Best Evidence Best evidence Not always randomized control trials Some evidence is better than others Get trained in how to judge papers How robust was study? Are participants like my patients? Was there bias? Evidence Based Practice Combine knowledge of best available evidence with informed clinical judgment with patient s values & expectations Relative benefit of chosen clinical method Conducting evidence based practice results in us adhering to ethical guidelines

6 Ethics & decisions ASHA resources Discuss ethical concerns with supervisors with peers ASHA help Policy documents & specific guidelines Ethics forum Special interest group communication ASHA support Code of ethics Issues in ethics statements ex.htm ASHA sanctions for violations Documentation Poor clinical record keeping is unethical Clinical documentation in speech-language pathology 5/f060905b.htm

7 Ethics & decisions ASHA Principle II Individuals shall evaluate the effectiveness of services rendered and of products dispensed and they shall provide services or dispense products only when benefit can reasonably be expected. Feeding tubes: saints or sinners? What s the evidence? robust? participant? bias? What problems does patient have? Have I checked advanced directives? TALK TO PATIENT, FAMILY, TEAM Why worry about nutrition? If people can t eat enough Protein energy malnutrition Muscle changes Muscles affect swallowing Veldee & Peth (1992)

8 Ethics & decisions Do tube feeds help? Swallow recovery (Lee et al, 2004 letter) need nutrition AND exercise Texture modified diet (Wright et al, 2005) patients on modified diets are susceptible to protein & energy deficit consult dietitian in case patient needs tube feed supplementation Think about specifics of your case Tubes & dementia? Historically against gastrostomy tube feeds Poor outcomes does not prolong survival (Mitchell, 1998) Lack of benefit (Meier, 2001) What does prolonging survival mean? What is benefit? What can tubes do? Nutrition Hydration Aspiration Quality of life? Patient perception (Anis et al, 2006) families & patients felt it helped with nutrition BUT still need evidence on real nutrition benefit & quality of life

9 Ethics & decisions Select for right patient Stroke (FOOD Trial, 2005) early feeding increase survival but worse outcome supplement malnourished Does this simply mean that sicker patients are more likely to have tube feeds? This is associated not causative! Dementia: think again Comorbidities? Prognosis? Patient wishes? SLP: what is your role palliative? or rehabilitative?

10 What s really important? End of Life What s Really Important? Evidence Based Practice Informed Patient Preference Culture & pain Two groups agreed pain is challenge mastered by patient - not necessarily by drugs pain is enemy - an unfair attack But also one group felt pain is test of faith punishment Koffman (2008)

11 What s really important? Trial by God Patient s perspective affects how patients can deal with distress clinical assessment perceived compliance with treatment Koffman (2008) Patient values & beliefs Whose perspective are we thinking about? Understand patient s knowledge base Understand their values Consider whole situation Patient Wishes

12 What s really important? Advance directive You must check your State Laws Establish if your patient made advance health intervention instructions Discuss them with caregivers & clinical team Types of advance directive Living Will Durable Power of Attorney Federal law provision US Living Will Registry American Bar Tool Kit Do Not Resuscitate On hospital admission In charts Specific to heart or respiration stopping Reality proxy decides

13 What s really important? Living will 50 states accept but each state has conditions Instructions to medical team Treatment discontinuation - coma suspension - artificial nutrition maintenance - pain killers Organ donation Durable power of attorney Written by grantor To make legal decisions Including health care Names designee Values History Medical decisions are based on personal beliefs preferences values Not a legal document but structured to help advance discussion for end of life care support proxy(ies) - they know patient s views University of New Mexico (2008)

14 What s really important? Five Wishes The person I want to make health care decisions for me when I can't The kind of medical treatment I want or don t want How comfortable I want to be How I want people to treat me What I want my loved ones to know Health care proxy Health care power of attorney State specific Named proxies May be restrictions on who National Institutes of Health NIH resource advance health care directives edirectives.htmldirectives

15 What s really important? Advance directives & dementia Who makes advance directives (ADs)? Which medical conditions? To restrict or request intervention? Factors in dementia? Triplett et al (2008) Advance directives & dementia 81 of 123 nursing home residents had ADs 70 named proxy 45 deferred decision to proxy 1 gave power to physician 8 shared thoughts of process DNR not linked to those with ADs Triplett et al (2008) Advance directives: who & what White & well educated Cancer more than dementia Restrictions rather than requesting more Dementia is interesting PROGRESSIVE decline to point where patient can t express view AND patient becomes medically more fragile SO more decisions need making Triplett et al (2008)

16 What s really important? Caregiver involvement When patient can t communicate wishes Must involve caregivers What pressure are they under? How are we communicating? Patient & surrogate disagreement Proxy projection What influences disagreement? Academic exercise vs coalface 144 pairs CPR/DNR 294 pairs extend life/relieve pain Surrogate disagree with Pt but agree with self = Projection Marks & Arkes (2008) Patient & surrogate disagreement CPR 90 of 144 projected Pain relief 260 of those 294 projected No correlation: age/ses/culture Marks & Arkes (2008)

17 What s really important? Carergiver Burden Sensitivity This is my fifth case of MND this month! Our excitement & patient fear Empathy & experience Diagnosis & caregivers Denial Loss Social stigma Isolation

18 What s really important? Pressures on caregivers Depression Anxiety Fear Financial hardship Link to poor health outcomes Pochard et al (2005) PBS Caregiving for the dying can often help professional caregivers learn more about their patients and their profession. Dr. Pat Caralis sees her job as helping people take control of their dying. She believes that the first step is good communication. For professional caregivers in hospitals and other institutions, she says, the process begins with listening carefully to patients and their families who often face agonizing choices they may not fully understand. What causes pressure? Amount of care? Patient age? More than 1 bed in room? Physical burden? Degree of impairment? TBI, cancer Haley et al (2003) Stancin et al (2008) Pochard et al (2005)

19 What s really important? Communication People are different Crisis affects understanding Quality affects right or wrong Must be broad based Clinicians must negotiate information giving how much? when? Azoulay (2000) & Ethical issues in dementia care (2006) Guilt & regret Explain surrogate decision making - again. No one person team decides together Caregivers involved often carry guilt Even when clear clinical team made decision Then patient dies despite decision Cox (2009) Letting go Saying goodbye Having a voice Relief of physical symptoms Companionship Fine & Peterson (2002)

20 How to get to the root of things How to Get to the Root of Things What affects patients? These are serious issues Expectations Perspectives of self loved one Kochkin et al (2007, 2010), Luterman (2003), Meyer & Hickson (2012), Palmer (2005, 2009), Wallhagen (2009) Frameworks 1

21 How to get to the root of things Evidence Based Practice Informed Clinical Expertise Informed Patient Preference Best Evidence Medical Principles Autonomy Beneficence Justice Clinician disclosure The law was written for physicians But it would be an applicable standard Standards of disclosure Physician or professional Patient or lay 2

22 How to get to the root of things History & legal cases Ears & battery Rights & bodies Know stuff before giving permission Material Canterbury v. Spence 1972 What is material? The person is not a larynx Eating is not about avoiding the A word Information disclosure adequacy not what you want to tell them but what is relevant to their life hence requires dialogue Informed consent Process not an event You don t consent a patient Need: intention capacity free will 3

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24 2016 References American Speech-Language-Hearing Association. (2003). Code of Ethics. Rockville: American Speech- Language-Hearing Association American Speech-Language-Hearing Association. (2014). Assessing the evidence. Rockville: American Speech- Language-Hearing Association. Anis, M., Abid, S., Jafri, W., Abbas, Z., Shah, H., Hamid, S., et al. (2006). Acceptability and outcomes of the Percutaneous Endoscopic Gastrostomy (PEG) tube placement - patients' and care givers' perspectives. BMC Gastroenterol, 6(37) Azoulay, E., Chevret, S., Leleu, G., Pochard, F., Barboteu, M., Adrie, C., et al. (2000). Half the families of intensive care unit patients experience inadequate communication with physicians. Crit Care Med, 28(8), Cox, J. (2009). Making the healing difference: guilt and regret. American Journal of Hospice & Palliative Medicine, 26(1), Curtis, J. R., & White, D. B. (2008). Practical guidance for evidence-based ICU family conferences. Chest, 134(4), Haley, W. E., LaMonde, L. A., Han, B., Burton, A. M., & Schonwetter, R. (2003). Predictors of depression and life satisfaction among spousal caregivers in hospice: application of a stress process model. J Palliat Med, 6(2), Hughes, J., & Baldwin, C. (2006). Ethical Issues in Dementia Care: making difficult decisions. London: Jessica Kingsley Publishers Koffman, J., Morgan, M., Edmonds, P., Speck, P., & Higginson, I. (2008). Cultural meanings of pain: a qualitative study of Black Caribbean and White British patients with advanced cancer. Palliative Medicine, 22(4), Lee, J., Tse, S., Tsze, S., & Kwok, T. (2004). Protein Malnutrition is adversely associated with swallowing recovery in tube-fed older people (letter). Jags, 52(9), Leslie, P. (2015). Leslie, P., & Casper, M. (2015). Ethical challenges: less about moral wrongdoing and more about communication breakdown. SIG 15 Perspectives on Gerontology, 20(3), Leslie, P., & Krival, K. (2010). How To Practice Undefensively. Perspectives on Gerontology, 15(2), Leslie, P., Rourke, N., & Sacks, T. (2014). Doing what works: a discussion of medical futility. SIG 13 Perspectives on Swallowing and Swallowing Disorders (Dysphagia), 23(2), Marks, M., & Arkes, H. (2008). Patient and surrogate disagreement in end-of-life decisions: can surrogates accurately predict patients' preferences? Med Decis Making, 28(4), Meier, D., Ahronheim, J., Morris, J., Baskin-Lyons, S., & Morrison, R. (2001). High short-term mortality in hospitalized patients with advanced dementia: lack of benefit of tube feeding. Arch Intern Med, 161, Mitchell, S. L., Kiely, D., & Lipsitz, L. (1998). Does artificial enternal nutrition prolong the survival of institutionalized elders with chewing and swallowing problems? Journal of Gerontology: Medicial Sciences, 53A, M207-M213 Pochard, F., Darmon, M., Fassier, T., Bollaert, P., Cheval, C., Coloigner, M., et al. (2005). Symptoms of anxiety and depression in family members of intensive care unit patients before discharge or death. A prospective multicenter study. Journal of Critical Care, 20(1), Stancin, T., Wade, S. L., Walz, N. C., Yeates, K. O., & Taylor, H. G. (2008). Traumatic brain injuries in early childhood: initial impact on the family. J Dev Behav Pediatr, 29(4), Sutherland C. (2006). Clinical documentation in speech-language pathology: essential information for successful practice. The ASHA Leader, Teasell, R., & Foley, N. (2005). Results from the FOOD trial. The Lancet Neurology, 4(5), Triplett, P., Black, B., Phillips, H., Fahrendorf, S., Schwartz, J., Angelino, A., et al. (2008). Content of Advance Directives for Individuals With Advanced Dementia. Journal of Aging and Health, 20(5), Veldee, M. S., & Peth, L. D. (1992). Can protein-calorie malnutrition cause dysphagia? Dysphagia, 7(2), Wright, L., Cotter, D., Hickson, M., & Frost, G. (2005). Comparison of energy and protein intakes of older people consuming a texture modified diet with a normal hospital diet. Journal of Hum Nutrition and Diet, 18(3),