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Just How Far Is Too Far? Ethics and Transitions From Technology To Support John R. Stone, MD, PhD Center for Health Policy and Ethics Creighton University.

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Presentation on theme: "Just How Far Is Too Far? Ethics and Transitions From Technology To Support John R. Stone, MD, PhD Center for Health Policy and Ethics Creighton University."— Presentation transcript:

1 Just How Far Is Too Far? Ethics and Transitions From Technology To Support John R. Stone, MD, PhD Center for Health Policy and Ethics Creighton University Medical Center

2 Learning Objectives Appreciate ethical dilemmas. Explain ethical features of deciding about transitions from life-saving devices to supportive care. Describe discussion strategies about advance directives and turning off implanted devices.

3 Terminology AD: Advance Directive (e.g., living will, power of attorney for health care or generally) CIED: Cardiovascular Implantable Electronic Devices ICD: Implanted Cardioverter Defibrillator

4 Story Progressive Alzheimers and a pacemaker for intermittent heart block and syncope

5 Decision Process Patient made wishes clear Spouse Children

6 Story Congestive Heart Failure H H H H H H H H H H ICD Time Quality of Life Quality of Life Turn off ICD? Turn off ICD?

7 ICDs/End-of-Life In the last weeks of their lives, twenty percent of ICD patients receive shocks which are painful and known to decrease quality of life and which greatly contribute to the distress of patients and their families. Lampert et al. 2010, p. 1008

8 Physicians/End-of-Life Discussions Studies show that many physicians report uneasiness with conversations addressing device management as patients near the end of their lives. Lampert et al. 2010, p. 1008

9 Ethics & Deciding: Rescue to Comfort Promote early ADs and related discussions Establish a moral space for good decisions and helpful dialogue –Respectful –Comfortable –Caring –Supporting Continue dialogue over course of the illness

10 Questions Encourage patients to execute ADs? Advise to consider conditions for turning off CIEDs in ADs? Why? When? How?

11 Questions If a patient with decision-making capacity or, if legally declared incompetent, a legal surrogate requests turning off a CIED: Is it ethically permissible? Is it euthanasia or physician-assisted suicide? Is it permissible to refuse?

12 CIEDs: Legal/Ethical A patient with decision-making capacity has the legal right to refuse or request the withdrawal of any medical treatment or intervention, regardless of whether s/he is terminally ill, and regardless of whether the treatment prolongs life and its withdrawal results in death. Lampert et al. 2010, p. 1009

13 CIEDs: Legal/Ethical When a patient lacks capacity, his/her legally-defined surrogate decision-maker has the same right to refuse or request the withdrawal of treatment as the patient would have if the patient had decision-making capacity. Lampert et al. 2010, p. 1009

14 CIEDs: Legal/Ethical Ethically and legally, there are no differences between refusing CIED therapy and requesting withdrawal of CIED therapy. Advance directives should be encouraged for all patients with CIEDs. Lampert et al. 2010, p. 1009

15 CIEDs: Legal/Ethical Legally, carrying out a request to withdraw life-sustaining treatment is neither physician- assisted suicide nor euthanasia. Lampert et al. 2010, p. 1009

16 CIEDs: Legal/Ethical Ethically, CIED deactivation is neither physician-assisted suicide nor euthanasia. Lampert et al. 2010, p. 1009

17 CIEDs: Legal/Ethical A clinician cannot be compelled to carry out an ethically-and legally-permissible procedure (i.e., CIED deactivation) that s/he personally views in conflict with his/her personal values. In these circumstances, the clinician cannot abandon the patient but should involve a colleague who is willing to carry out the procedure. (Underline added) Lampert et al. 2010, p. 1009

18 Surrogate Decision-Making If insufficient capacity/ declared incompetent Must respect patients AD choice of surrogate If no AD surrogate, clinicians must identify the legally recognized appropriate surrogate as per their state. Lampert et al. 2010, p. 1010

19 Questions Encourage patients to execute an advance directive (AD)? Should patients be advised to include conditions for turning off CIEDs in their ADs? Why? When? How?

20 Worries If we introduce the idea of withdrawal of pacer/ICD support, are we giving the patient and family the message that –we are giving up or –their outlook is worse than we say? Will we destroy their hope? How avoid such messages or outcome?

21 Question How should we introduce the discussion about future termination of pacemaker or ICD life support?

22 ADs, CIEDs, & Hope Discussions Setting: Calm, Caring, Privacy, Comforting, Positive Perception: Patients, Providers (comfort with death, dying, and the discussion) Invitation Knowledge Empathy Summarize/Strategize Guide (Documents, navigation) Adapted from Henning & Carlson 2010

23 Background Forces Rescue Support Comfort Support Comfort

24 Background Forces Rescue Support Comfort Support Comfort Technical Imperative Acute Care Long-term Care

25 Ethics and Choices Respect for Persons Respect for Persons Has capacity Has capacity Respect for Autonomy Respect for Autonomy AD Surrogate Withdraw CIED Withdraw CIED Requests withdrawal Lacks Capacity/legally declared incompetent Lacks Capacity/legally declared incompetent AD Directive, values, preferences Requests withdrawal Lampert et al. 2010, p. 1009

26 Ethics and Choices Respect for Persons Respect for Persons Protect & promote best interests Legal Surrogate Withdraw CIED Withdraw CIED No AD, values & preferences unclear No AD, values & preferences unclear Requests withdrawal Lacks Capacity/legally declared incompetent Lacks Capacity/legally declared incompetent

27 Sharing Bad News Avoidance: Responsible, practice failure, adverse reactions, unresolved personal issues about death and dying SPIKES Protocol* –Setting –Perception –Invitation –Knowledge –Empathy –Summarize & Strategize *Henning & Carlson 2010

28 References/Resources-1 Butler, Katy. (2010, June 14). What Broke My Fathers Heart. The New York Times. Goldstein N, Carlson M, Livote E, Kutner JS. (2010) Management of Implantable Cardioverter- Defibrillators in Hospice: A Nationwide Survey. Annals of Internal Medicine, 152 (5), Henning, Kevin S; Carlson, Margi. (2010, April). Delivering Bad News: Helpful Guidance that Also Helps the Patient. National Hospice and Palliative Care Organization. Newsline. Kramer, D. B., Ottenberg, A. L., Gerhardson, S., Mueller, L. A., Kaufman, S. R., Koenig, B. A., & Mueller, P. S. (2011). "Just because we can doesn't mean we should": Views of nurses on deactivation of pacemakers and implantable cardioverter-defibrillators. Journal of Interventional Cardiac Electrophysiology: An International Journal of Arrhythmias and Pacing, 32(3), doi: /s Lampert, R., Hayes, D. L., Annas, G. J., Farley, M. A., Goldstein, N. E., Hamilton, R. M.,... Zellner, R. (2010). HRS expert consensus statement on the management of cardiovascular implantable electronic devices (CIEDs) in patients nearing end of life or requesting withdrawal of therapy. Heart Rhythm: The Official Journal of the Heart Rhythm Society, 7(7), doi: /j.hrthm Matlock, D. D., Nowels, C. T., Masoudi, F. A., Sauer, W. H., Bekelman, D. B., Main, D. S., & Kutner, J. S. (2011). Patient and cardiologist perceptions on decision making for implantable cardioverter-defibrillators: A qualitative study. Pacing and Clinical Electrophysiology : PACE, 34(12), doi: /j x; /j x

29 References/Resources-2 Mueller, P. S., Ottenberg, A. L., Hayes, D. L., & Koenig, B. A. (2011). "I felt like the angel of death": Role conflicts and moral distress among allied professionals employed by the US cardiovascular implantable electronic device industry. Journal of Interventional Cardiac Electrophysiology: An International Journal of Arrhythmias and Pacing, 32(3), doi: /s National Hospice and Palliative Care Organization. Talking About Treatment Options and Palliative Care: A Guide for Clinicians. Phend, Crystal. (2010, May 14). HRS: Cardiac Device Deactivation Not Euthanasia, Society Says. Medpage Today. Raphael, C. E., Koa-Wing, M., Stain, N., Wright, I., Francis, D. P., & Kanagaratnam, P. (2011). Implantable cardioverter-defibrillator recipient attitudes towards device deactivation: How much do patients want to know? Pacing and Clinical Electrophysiology: PACE, 34(12), doi: /j x; /j x Russo, J. E. (2011). Original research: Deactivation of ICDs at the end of life: A systematic review of clinical practices and provider and patient attitudes. The American Journal of Nursing, 111(10), doi: /01.NAJ Waterhouse, E., & Ahmad, F. (2011). Do implantable cardioverter defibrillators complicate end-of- life care for those with heart failure? Current Opinion in Supportive and Palliative Care, 5(4), doi: /SPC.0b013e32834d2cce


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