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