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Just How Far Is Too Far?Ethics and Transitions From
Technology To Support
John R. Stone, MD, PhDCenter for Health Policy and
EthicsCreighton University Medical
Center
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.
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
Story• Progressive Alzheimer’s and a pacemaker for
intermittent heart block and syncope
Decision Process
Patient made
wishes clear
Spouse
Children
AD?
StoryCongestive Heart Failure
HH H
H
H
ICD
Time
Qualityof
Life
AD?
AD? AD?Turn off
ICD?
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
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
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
Questions• Encourage patients to execute ADs?• Advise to consider conditions for turning off
CIEDs in ADs? • Why?• When?• How?
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?
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
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
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
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
CIEDs: Legal/Ethical
• “Ethically, CIED deactivation is neither physician-assisted suicide nor euthanasia.”
Lampert et al. 2010, p. 1009
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
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
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?
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?
Question • How should we introduce the discussion
about future termination of pacemaker or ICD life support?
ADs, CIEDs, & Hope Discussions• Setting: Calm, Caring, Privacy, Comforting, Positive• Perception: Patient’s, Provider’s (comfort with death,
dying, and the discussion)• Invitation• Knowledge• Empathy• Summarize/Strategize • Guide (Documents, navigation)
Adapted from Henning & Carlson 2010
Background Forces
Rescue SupportComfort
Background Forces
Rescue SupportComfort
Technical Imperative
Acute Care
Long-term Care
Ethics and Choices
Respect forPersons
Has capacity
Respect forAutonomy
AD Surrogate
WithdrawCIED
Requests withdrawal
Lacks Capacity/legally
declared incompetent
AD Directive, values,
preferences
Requests withdrawal
Substituted Judgment
Lampert et al. 2010, p. 1009
Ethics and Choices
Respect forPersons Protect &
promote best interests
Legal Surrogate
WithdrawCIED
No AD, values & preferences
unclear Requests withdrawal
Best Interests
Lacks Capacity/legally
declared incompetent
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
References/Resources-1• Butler, Katy. (2010, June 14). What Broke My Father’s 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), 296-299.• Henning, Kevin S; Carlson, Margi. (2010, April). Delivering Bad News: Helpful Guidance that Also
Helps the Patient. National Hospice and Palliative Care Organization. Newsline. http://www.nxtbook.com/nxtbooks/nhpco/newsline_201004/#/0
• 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), 243-252. doi: 10.1007/s10840-011-9596-7
• 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), 1008-1026. doi: 10.1016/j.hrthm.2010.04.033
• 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), 1634-1644. doi: 10.1111/j.1540-8159.2011.03237.x; 10.1111/j.1540-8159.2011.03237.x
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), 253-261. doi: 10.1007/s10840-011-9607-8
• National Hospice and Palliative Care Organization. Talking About Treatment Options and Palliative Care: A Guide for Clinicians. http://www.nhpco.org/i4a/pages/index.cfm?pageID=6412
• Phend, Crystal. (2010, May 14). HRS: Cardiac Device Deactivation Not Euthanasia, Society Says. Medpage Today. http://www.medpagetoday.com/MeetingCoverage/HRS/20119
• 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), 1628-1633. doi: 10.1111/j.1540-8159.2011.03223.x; 10.1111/j.1540-8159.2011.03223.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), 26-35. doi: 10.1097/01.NAJ.0000406411.49438.91
• 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), 307-311. doi: 10.1097/SPC.0b013e32834d2cce