Ethical Issues in Neuroscience Nursing: A Case-Based … · •List three ethical issues that are...

Ethical Issues in Neuroscience Nursing:

A Case-Based Approach

Dea Mahanes, MSN, RN, CCRN, CNRN, CCNSAPN 3 – Clinical Nurse Specialist, Neurocritical Care

University of Virginia Health SystemCharlottesville, VA

sdm4e@virginia.edu

• I have no relevant relationships with industry.

• Aggregate cases based on experience.

• By definition, lots of gray….emphasis on prevention and a thoughtful approach.

Disclosures

• List three ethical issues that are commonly encountered by neuroscience nurses.

• Identify two strategies that can be used in the practice setting to promote ethical decision-making.

• Define moral distress, moral residue, and the crescendo effect.

Objectives

• Ethical dilemma– Two or more ethically acceptable but mutually

exclusive alternatives

• Guidance for clinical practice– ANA Code of Ethics– Position statements

• Variety of ethical frameworks• Ethical principles, legal standards

Clinical Ethics

• Respect for persons (autonomy)– Right of an individual to make choices based on personal

values and beliefs

• Non-maleficence– Avoid harm

• Beneficence– Take action to promote well-being

• Justice– Fair allocation of resources

Principle-Based Ethics

• Privacy and confidentiality

• Fidelity

– Uphold promises and commitments

• Veracity

– Tell the truth, avoid deception

Related Ethical Principles

• 44 yo male, homeless, history of TBI, admitted for seizure

• Imaging reveals left frontotemporal lesion

• Neurosurgeon recommends surgical resection

• Patient refuses

• Team members question capacity

Case 1: Can this patient make a choice?

• Grounded in autonomy• Presumption is that patient has decisional capacity until

determined otherwise• Requirements

– Understand relevant information – Understand significance for own situation– Engage in reasoning about alternatives and make a decision– Communicate that decision (but does not have to be verbal)

• Context-specific and may vary over time • Differs from competence (legal term)

Decisional Capacity

• Three conditions

– Decisional capacity

– Relevant information provided to patient and patient must understand that information

– Voluntary (no coercion)

Informed Consent

• Special considerations?

– Location of lesion, history, medication effects

• Does this patient have decisional capacity?

– Awake, alert, oriented, frequent paraphasic errors

– Very eager to leave hospital, sometimes agitated

– SLP and psych involvement

– Determined to have decisional capacity

Case 1: Can this patient make a choice?

• What happened?

– Friend to care for dog and pick up belongings

– Surgery completed, low grade astrocytoma

– Discharged POD 5 with follow-up planned

• Preventive ethics…

– Advanced medical directive

Case 1: Can this patient make a choice?

• 32 yo female, admitted with anti-NMDAR encephalitis, lacks decisional capacity

• Suspected ovarian teratoma on imaging

• Team recommending removal of ovary

• Parents, boyfriend at bedside

• Parents mention that patient is also married

Case 2: Who decides?

• Medical Power of Attorney or Agent for Health Care Decisions (assigned in an Advanced Directive)

• If no MPOA or Agent, based on hierarchy of relationships that varies by state – For example, in Virginia

• Court-appointed guardian

• Family, in order: spouse, adult child, parent, sibling, other

relatives

• Other adult familiar with values and beliefs

(limited authority)

Identifying a Surrogate Decision-Maker

• Advanced directive

• Substituted judgment– Surrogate makes decisions based on patient’s

values and beliefs about medical care

• Best interests – Patient’s values and beliefs are not known

– Makes decisions based on belief of what is in the patient’s best interests

Standards for Surrogate Decision-Making

• Review state law and institutional policy

• No MPOA, agent, or guardian

• Husband contacted, defers

• No adult children

• Parents agree to surgery

• Gradual improvement

Case 2: Who decides?

• No improvement

• Team recommends removal of other ovary

• How does the team balance the potential for improvement in neurological condition against loss of reproductive potential?

– Evidence/clinical recommendations

– Values and beliefs

But what if…

• 20 yo male, T-boned and “spun” by a drunk driver at an intersection

• GCS 3 on scene, agonal respirations

• Admitted to Neuro ICU and managed per TBI guidelines

• Exam 6 days post-injury (off-sedation)– No eye opening

– Minimal flexion to pain in LUE only

• MRI confirms severe diffuse axonal injury

Case 3: When the prognosis is uncertain…

• Limitations of prognostication and the role of uncertainty

• Exploring values and beliefs

– Whose values and beliefs? Patient? Family? Healthcare team?

• Nurses’ role in communication

Goals of Care and EOL Decision-Making

• Be careful with terminology when talking with families

• Acknowledge uncertainty

• Help families define pt’s values through storytelling

• Recognize your own biases

Goals of Care and EOL Decision-Making

• Paternalism

– Clinician decides

• Informed choice

– Clinician provides information, patient/surrogate decides

• Shared decision-making

– Mutually agreed upon decision

Decision-Making Models

Shared Decision-Making

Health Care Team Patient/Family

Preferences, Values,

and Beliefs,Best Interests

Treatment Options and

Evidence

DECISION

Adapted from Nelson & Mahant, Pediatr Clin N Am 2014; 61:641-652.

• Honest, open communication• Multi-disciplinary team approach• Individualized approach• Admit the unknown• Defining role of surrogate decision-maker• Clarify values • No right or wrong answers• Care continues regardless of decision• Increase time listening• Ongoing support

When the prognosis is uncertain…

• 20 yo male, T-boned and “spun” by a drunk driver at an intersection

• Severe DAI, GCS 1-3-1T

• In this case…– Trach and PEG placed

– Transferred to TBI facility for family teaching

– Lives at home with support

– Severe disability

Case 3: When the prognosis is uncertain…

• Talk model – Team talk: support for alternatives

– Option talk: detailed information about options

– Decision talk: support patient, assist in making a decision

• Decision support– Decision aids, risk prediction, patient

care plans

Across the continuum…SDM Model for Outpatient Epilepsy

Pickrell WO, Elwyn G, Smith PEM. Epilepsy & Behavior 2015; 47:78-82.

• 23 yo female, multi-trauma, with severe TBI and presumed anoxic brain injury

• On ECMO, maximal vasopressor support

• Despite interventions, unable to oxygenate

• Signs of additional organ failure

• Team recommends comfort measures

• Parents want “everything”

Case 4: “Do everything.”

• 59 yo male with history of severe TBI 2 years prior, MCS, seizures

• Lives in SNF, non-verbal, dependent for care, feeding tube, 4 recent hospital admissions, stage IV sacral pressure ulcer

• Admitted for pneumonia and status epilepticus• Unable to remove endotracheal tube, worsening renal

failure • Grimaces with turns and other care measures• Brother is decision-maker • Decision re: tracheostomy? Hemodialysis?

Case 5: “Do everything”…take 2

• What is “futile” treatment?• What is “potentially inappropriate” treatment?• Who decides?• Can there be a fair process for conflict resolution?• Should clinicians have the right to make unilateral

decisions about withholding or withdrawing treatments?

• Should considerations of cost enter in to such discussions?

Important Questions

• Emphasizes prevention through proactive communication and early involvement of experts

• “Inappropriate” or “potentially inappropriate”• Clinicians should advocate for treatment plan they

believe is appropriate• Process-based approach to conflict resolution• Ethically inappropriate to give unilateral authority

for decisions to pts/surrogates or individual clinicians

AJRCCM 2015, 19:1318-1330.

1. Expert consultation

2. Notice of process to surrogates

3. Second medical opinion

4. Review by interdisciplinary hospital committee

5. Opportunity to transfer to another institution

6. Inform surrogates of right to extramural appeal

7. Implement decision

If time sensitive: implement as much of process as possible, should not provide futile interventions.

Futile: cannot achieve desired physiologic goal.

Process-Based Approach

• 23 yo female, multi-trauma, with severe TBI and presumed anoxic brain injury

• Unable to oxygenate • Parents want “everything”• What is everything?• In this case…

– Expert consultation– DNR, no escalation, family support

Case 4: “Do everything.”

• 59 yo male with hx TBI, MCS, seizures• Renal failure improves, still unable to extubate• In this case…

– Expert consultation– Ongoing discussion with surrogate– Pain management– Palliative consultation– Consensus decision to place trach– Returned to SNF

• Preventive ethics

Case 5: “Do everything”…take 2

• 56 yo female admitted for treatment of basilar artery aneurysm (again)

• Incomplete obliteration of aneurysm

• Peri-procedural brainstem strokes

• Persistent dysphagia

• Declines PEG

Case 6: Coffee tastes better by mouth!

• Should this patient be permitted to eat by mouth?

• Are the nurses ethically obligated to provide oral intake?

Ethical Issues

• Diet modification recommended, patient refuses

– Education, re-education

– Assumed risk vs Real risk

• Assumed risk – Alter recommendation, maintain recommendation, reinforce safety

• Real risk – Consequences

– Ongoing monitoring and follow-up

Approach to Refusal of Recommended Diet Modifications

Kaizer et al. Dysphagia 2012; 27: 81-87.

• In this case…– SLP evaluation: “no safe oral diet can be

recommended”

– Felt to have decisional capacity

– Education, re-education

– Shared decision to eat by mouth with precautions as part of a palliative approach to care

– Staff fully supportive

Case 6: Coffee tastes better by mouth!

• 32 yo male admitted s/p anoxic brain injury

• GCS 3 at outside hospital, mother refused brain death evaluation and requested transfer

• Transferred 4 days after event

• Assessed, exam consistent with brain death

• Mother refuses to allow team to complete apnea testing

Case 7: Sad stories…

• Can surrogates refuse testing for brain death?

• How should clinicians respond to requests for continued cardiopulmonary support after death by brain criteria?

Ethical Questions

“Elective ventilation”

• Ventilation without benefit to the individual

• Examples– While preparing for donation, or to allow time for

progression to brain death

– To allow family time to understand BD• “Brief period of accommodation”

– During pregnancy, to allow fetal

development

Timing of Discontinuation of Cardiorespiratory Support

• Usually sudden, unexpected event

• Different kind of death - “Signs of life and signs of death”

• Pre-existing misperceptions

• Distinction between death by brain criteria, coma, and persistent vegetative state

• Concerns about motives for BD declaration

Communicating with Families about Brain Death

• Communicate openly and honestly from the time of initial hospitalization

• Seek agreement within team

• Involve supportive professionals

• Facilitate presence (including during BD testing) as desired by the family

• Offer rituals that mark the transition from life to death

Communicating with Families about Brain Death

• Avoid misleading terms and questions

– Cannot withdraw “life support” when patient has been declared dead

– Not a coma

– Not a vegetative state

– Consent not needed for DNR

Communicating with Families about Brain Death

• In this case…– Ethics, legal involvement

– Decision to proceed with apnea testing

– Declared dead by brain criteria

– Mother refuses to accept declaration of death

– Time set for discontinuation of support

– Choices where possible

Case 7: Sad stories…

Why is it so important to address ethical concerns?

Moral Distress

Moral Distress

• Unable to take action that you think is morally or ethically right

• Internal (personal) or external (institutional) constraints keep one from taking actions perceived to be morally right

Psychological Distress

• Emotional response to a situation

• Not necessarily a violation of core values

• May co-exist with moral distress

Sources of Moral Distress

• Aggressive treatments that are unlikely to have a good outcome

• Providing care inconsistent with patient wishes

• Concerns about pain control

• Inadequate number/skill set of staff

• Ineffective team communication

• Lack of administrative support

• Etc….

Moral Residue

• Lingering effects after acute distress/situation is resolved

• Caused by repeated violations of core values or unaddressed moral distress

• Threatens moral integrity

Crescendo Effect

• Moral residue creates new “baseline”

• Each subsequent episode become additive

• Steady increase in baseline with responses becoming more pronounced

• “Here we go again”

• For clinicians, can lead to anger,

depression, burnout…

Strategies to Address Moral Distress

• Support for ethical practice when conflict arises

• Preventive ethics

• Address three areas of concern

– Patient

– Unit/team

– System/institution

Take home messages…

• Good ethics starts with good facts. • Many ethical conflicts can be addressed or even

avoided through skilled communication.– Important role for nursing– Use your resources

• Watch your language.• Early recognition, early consultation.• Take care of yourself, and take care of

each other.

Selected References• Bosslet, G. T., Pope, T. M., Rubenfeld, G. D., Lo, B., Truog, R. D., Rushton, C. H., . . .

Society of Critical Care. (2015). An official ATS/AACN/ACCP/ESICM/SCCM policy statement: Responding to requests for potentially inappropriate treatments in intensive care units. American Journal of Respiratory and Critical Care Medicine, 191(11), 1318-1330. doi:10.1164/rccm.201505-0924ST [doi]

• Code of ethics for nurses with interpretive statements. (2R ed., ). Silver Spring, MD: American Nurses Association. Retrieved from http://www.r2library.com.proxy.library.vcu.edu/Resource/Title/1558105999

• Epstein, E. G. & Hamric, A. B. (2009). Moral distress, moral residue, and the crescendo effect. Journal of Clinical Ethics, 20, 330-342.

• Long, B., Clark, L., Cook, P. (2011). Surrogate decision making for patients with severe traumatic brain injury. Journal of Trauma Nursing, 18, 204-212.

• Flamm, A. L., Smith, M. L., & Mayer, P. A. (2014). Family members' requests to extend physiologic support after declaration of brain death: A case series analysis and proposed guidelines for clinical management. The Journal of Clinical Ethics, 25(3), 222-237. doi:201425307 [pii]

Selected References, cont’d• Frontera, J. A., Curtis, J. R., Nelson, J. E., Campbell, M., Gabriel, M., Mosenthal, A.

C., . . . Improving Palliative Care in the ICU Project Advisory Board. (2015). Integrating palliative care into the care of neurocritically ill patients: A report from the improving palliative care in the ICU project advisory board and the center to advance palliative care. Critical Care Medicine, 43(9), 1964-1977. doi:10.1097/CCM.0000000000001131 [doi]

• Kaizer, F., Spiridigliozzi, A. M., & Hunt, M. R. (2012). Promoting shared decision-making in rehabilitation: Development of a framework for situations when patients with dysphagia refuse diet modification recommended by the treating team.Dysphagia, 27(1), 81-87. doi:10.1007/s00455-011-9341-5 [doi]

• Souter M. J., Blissitt, P. A., Blosser, S., Bonomo, J., Greer, D., Jichici, D., …&Yeager, S. (2015). Recommendations for the Critical Care Management of Devastating Brain Injury: Prognostication, Psychosocial, and Ethical Management. Neurocritical Care (on-line ahead of print, April 18, 2015). doi: 10.1007/s12028-015-0137-6.

• White, D. B., Cua, S. M., Walk, R., Pollice, L., Weissfeld, L., Hong, S., …& Arnold, R.M. (2012). Nurse-led intervention to improve surrogate decision making for patients with advanced critical illness. American Journal of Critical Care, 21, 396-409.

Questions?