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Ethical Considerations in Transplantation Marci Andrejko, RN, BSN, OCN® Sharon Flynn, MS, RN, ANP-BC, OCN® National Institutes of Health Clinical Center Nursing Department Discover What’s Next in Nursing NIH Clinical Center Nursing Department Full Disclosure • Sharon Flynn has nothing to disclose. • Marci Andrejko has nothing to disclose. • Special thanks to: – Joan Sorich, RN, MSN, AOCNS® – Frances Cartwright-Alcarese, RN, PhD, AOCN® Discover What’s Next in Nursing NIH Clinical Center Nursing Department Objectives At the conclusion of this lecture, participants will be able to: 1. Define an ethical dilemma. 2. Discuss and explore the role of the nurse in ethical decision making in a complex healthcare environment. 3. Analyze response to a complex ethical dilemma and evaluate the impact of response within your clinical practice. Discover What’s Next in Nursing NIH Clinical Center Nursing Department Definitions • Ethics is the discipline dealing with what is good and bad and with moral duty and obligation. • Ethical dilemma is also known as a moral dilemma. It is situation in which there is apparent conflict between moral imperatives, in which to obey one would result in transgressing another. Webster’s Online Dictionary, 2013 Discover What’s Next in Nursing NIH Clinical Center Nursing Department Bioethical Principles • Beneficence is to benefit or help other people • Nonmaleficence is to prevent or avoid harm to persons: “do not harm” • Sanctity of life is to hold human life in high regard and respect • Justice is the duty to act with fairness, giving every individual what is owed them Discover What’s Next in Nursing NIH Clinical Center Nursing Department Bioethical Principles • Personal autonomy occurs when a competent individual or their surrogate decide for or against treatment • Benefit-Burden is when ethically mandated medical treatments provide more benefit than burden Hematopoietic Stem Cell Transplantation: A Manual for Nursing Practice, 2013 Discover What’s Next in Nursing NIH Clinical Center Nursing Department Ethical Considerations in Clinical Care • • • • • Norms of family life Relationship between the clinician and the patient Professional integrity of clinicians Cost-effectiveness and justice Cultural or religious variations Hematopoietic Stem Cell Transplantation: A Manual for Nursing Practice, 2013 Discover What’s Next in Nursing NIH Clinical Center Nursing Department Case Presentation Patient Background • Young, adult, Korean, female • Supportive husband • Chronic Granulomatous Disease (CGD) • History of chronic lung infections, left foot osteomyelitis, and other infections requiring frequent and lengthy hospitalizations • Anxiety and depression unidentified and untreated until transplant work-up in 2005 • Started on anti-depressant medication Discover What’s Next in Nursing NIH Clinical Center Nursing Department Patient Background • • • • • • • • • Work-up for matched related PBSCT in 2005 Youngest sister identified as HLA matched donor Donor killed in care crash before cell collection Thoughts of suicide nearly every day X 1 year after her sister’s death Reduction in suicidal thought frequency 2007 through 2009, despite attempts 4 attempts: three in 2007 and one in 2009 Self stopped psychiatric medications in 2008 Re-evaluated for transplant in 2009 Second sister was identified as HLA matched donor Discover What’s Next in Nursing NIH Clinical Center Nursing Department Is this patient a candidate for a stem cell transplant giver her psychiatric history? 1. Yes 2. No Discover What’s Next in Nursing NIH Clinical Center Nursing Department Which of the following factors make a case for transplantation in this patient? 1. Patient has a matched related donor 2. Psychiatric issues were directly related to chronic health conditions and situational event 3. CGD is a transplantable disease 4. Unethical to deny a transplant based on a co-morbid condition Discover What’s Next in Nursing NIH Clinical Center Nursing Department Transplant Regimen • Campath® (alemtuzumab) - monoclonal antibody • Busulfex ® (busulfan) - alkylating antineoplastic agent • Rapamune® (sirolimus) – immunosuppressive agent • 4 week inpatient hospitalization Discover What’s Next in Nursing NIH Clinical Center Nursing Department Care Planning • • • • • • Multidisciplinary planning meetings – frequent Conduct interview and education in primary language Social worker to see patient daily Psychiatry to see patient 2x per week Husband to stay at bedside except for nighttime Contacted patient’s family to encourage continued additional support through transplant • Re-stared Effexor® (venlafaxine) 75 mg • Patient signed agreement for medication compliance Discover What’s Next in Nursing NIH Clinical Center Nursing Department Daily Nursing Assessment Questionnaire 1. 2. 3. 4. 5. How are you feeling today? **How depressed are you feeling today? **How worried are you feeling today? **How hopeless are you feeling today? In the past 24 hours, have you had any thoughts about hurting or killing yourself? ** Rating scale: 1=“not at all” and 5=“extremely” ** Discover What’s Next in Nursing NIH Clinical Center Nursing Department Day to Day Care Issues • Making questions a ‘normal’ part of the assessment • High alert moments – underlying fear of how to care for the patient (outside usual scope of practice) • Higher speculation for drug seeking behaviors when managing ‘usual’ transplant symptoms • Taking time away from other patients for increased monitoring Discover What’s Next in Nursing NIH Clinical Center Nursing Department What would your #1 ethical concern be while caring for this patient? 1. Patient care takes time away from other patients 2. Personal disagreement with taking patient to transplant 3. Patient won’t be compliant with care during emotional instability 4. Lacking expertise to adequately assess and care for the patient’s psychological needs 5. No ethical concerns Discover What’s Next in Nursing NIH Clinical Center Nursing Department Patient Outcomes • Patient had 2 repeat admissions for viral infections (CMV) and new onset of cough • Returned to Korea in Sept 2010 • Patient is disease free • No graft-versus-host disease (GVHD) or other infections • Divorced in 2011 • No recorded suicidal attempts • Continues on minimal antidepressant medications • Continues yearly follow-up with transplant team Discover What’s Next in Nursing NIH Clinical Center Nursing Department Lessons Learned • Situational aspects of psychiatric condition can be improved by receiving transplant in some cases • Psychiatric diagnosis should be assessed on a case by case basis • Increased awareness of our own ethical issues and its impact on patient care • Working outside the traditional role of bedside nursing with interdisciplinary teams increases the quality of patient care Discover What’s Next in Nursing NIH Clinical Center Nursing Department Plan of Action and Key Factors • Accessing the organizational infrastructure • Availability and accessibility of resources • Mentorship embedded in a culture of collaborative, interdisciplinary communication Discover What’s Next in Nursing NIH Clinical Center Nursing Department Key Factor Organizational Infrastructure and Administrative Support • Access organizational resources to mentor and support the bedside nurse in collaborative ethical decision making • Develop standards for an ethical interdisciplinary process that includes role definition of team members and procedures to be followed • Ensure that practices are consistent within the institution Discover What’s Next in Nursing NIH Clinical Center Nursing Department Key Factor Availability and Accessibility of Resources • Provide information regarding access to consultative, educational, and advocacy resources in support of patients, families, and interdisciplinary team to foster ongoing collaboration • Make resources available when staff are faced with complex ethical issues within the clinical area – Journal Club – Continuing Education – Schwartz Rounds – Ethics Consult Discover What’s Next in Nursing NIH Clinical Center Nursing Department Key Factor Mentorship Embedded in Culture • Mentor, coach and support the RN through the process – Embed a Mentorship Continuum relative to ethical decision making within the culture of your clinical area – Establish regular “Debriefing” sessions • To discuss complex ethical issues relative to nursing • To manage decision-making skills • To resolve conflicts in a safe environment Discover What’s Next in Nursing NIH Clinical Center Nursing Department Summary • Nurse successfully engages in ethical decision making as a collaborative interdisciplinary process. • Nurse practices fully within the respective scope of practice outside of the traditional role. • Nurse actively seeks opportunities and mentorship to enhance his/her own professional growth and development. Discover What’s Next in Nursing NIH Clinical Center Nursing Department Questions? Discover What’s Next in Nursing NIH Clinical Center Nursing Department