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
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
Spouse
Patient
made
wishes clear
Children
Story
Congestive Heart Failure
H
H
H
ICD
H
Quality
of
Life
H
Turn off
ICD?
Time
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 physicianassisted 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
Support
Comfort
Background Forces
Long-term Care
Acute Care
Rescue
Technical Imperative
Support
Comfort
Ethics and Choices
Has
capacity
Respect for
Autonomy
Respect for
Persons
Requests
withdrawal
Withdraw
CIED
Requests
withdrawal
AD Directive,
values,
preferences
Lacks
Capacity/legally
declared
incompetent
Lampert et al. 2010, p. 1009
AD
Surrogate
Ethics and Choices
Withdraw
CIED
No AD, values
& preferences
unclear
Respect for
Persons
Lacks
Capacity/legally
declared
incompetent
Requests
withdrawal
Legal
Surrogate
Protect &
promote best
interests
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
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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 CardioverterDefibrillators 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.15408159.2011.03237.x
References/Resources-2
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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), 2635. doi: 10.1097/01.NAJ.0000406411.49438.91
Waterhouse, E., & Ahmad, F. (2011). Do implantable cardioverter defibrillators complicate end-oflife care for those with heart failure? Current Opinion in Supportive and Palliative Care, 5(4), 307311. doi: 10.1097/SPC.0b013e32834d2cce