Susan Piggott - Haematology Association of Ireland

Susan Piggott
Transplant Co-ordinator
Belfast City Hospital

A Concept Analysis of Moral Distress
in the Stem Cell Transplant Setting

The Chosen One
“You are the chosen one /They said / You are the perfect
match /They said…/You can save her life /They said…
I’m so grateful /She said /I need your help /She cried /
Are you sure you want to do it /She asked /I love you so
much / She said …
I don’t want to do it / I thought / My bones are bursting / I
felt / This scares me so much / I thought / No I’m
absolutely fine / I said…
She may not make it / They said / Thanks for your help /
They said.
Just give her more / I thought / She still needs me / I felt
/ What will happen now / I asked
You gave her ten years / They said / We are all so
grateful / They said / I’m empty / I said / A part of me has
died too /I thought…

A Concept Analysis of Moral Distress
in the Stem Cell Transplant Setting
- Idea / phenomenon / words
- building block of theory development
Understanding nursing practice requires clarifying conceptual meaning

A Concept Analysis of Moral Distress
in the Stem Cell Transplant Setting
- Formal structured methodology
- Strong philosophical foundations
- Clarifies the abstract
- Can adopt qualitative and empirical elements
- Unpicks the ethics of duty / obligation
(deontology), altruism, existentialism,
and utilitarianism

A Concept Analysis of Moral Distress
in the Stem Cell Transplant Setting
- Composite term
- Distress with a moral component
- Concerned with core values of right and wrong
- Profound anguish
- Personal

THINGS
“…It is 5am. All the worse things come
stalking in
And stand icily about the bed looking worse
and worse.”
Fleur Adcock (2000)

A Concept Analysis of Moral Distress
in the Stem Cell Transplant Setting
- Conceptual meaning may change across contexts
- Some elements may remain constant
- Potential (TT, health, willingness, estrangement)
- Sibling (familial link)
- SC donor (PB or BM)

Moral Distress in Nursing Contexts
General nursing practice (Pauley et al, 2009)
Advanced nursing practice (Ulrich and Hamric, 2008)
Critical care (van Soeren and Miles, 2003)
Adult setting (Rice et al, 2008)
Paediatric (Austin et al, 2009)
Neonatal settings (Kain, 2007)
Concientious objection (Tiedje, 2000; Caitlin et al, 2008)
Orthopaedic nursing (Erlen, 2001)
Nurses involved in childbirth education (Curl, 2009)
Cancer care (Cohen and Erickson, 2006)
Palliative care (Weissman, 2009)
Primary Care (Laabs, 2007)
Mental health (Austin et al, 2003)
Care of the elderly (Bolmsjo, 2006; Rittenmeyer and
Huffman, 2009)
The practice of abortion (Hanna, 2005)
Acute care (Elpern, 2005; Laabs, 2007; Rice et al, 2008)
Long term care (Pijl-Zieber et al, 2008)
Psychiatric nursing (Severinsson, 2003)
Non-heart beating organ donation (Mandell et al, 2006)
Non-nursing students (Carpenter, 2010; Range and
Rotherham, 2010)

Sources of MD in other contexts
-Futile care
- Competing ethical principles
- Resources
- Power differential
- Conflicting loyalties
- Lack of communication
Consequences
- Dissatisfaction
-Anxiety
-Distress
- Burnout

QUESTIONS TO ADDRESS
o What is MD?
o Does MD exist in the context of potential sibling SC donors?
o What factors influence the development of MD in this
context (the triggers / sources / causes)
o Is there a nursing role in preventing or minimising MD

METHODOLOGY
Stages of analysis:
1. Determine the aims or purposes of analysis
2. Select concept of interest and associated
expressions (surrogate/related terms)
3. Identify all the uses of the concept
4. Source and select evidence
5. Determine attributes of the concept
6. Establish references, antecedents and
consequences of the concept
7. Present a model case - testing tentative criteria
8. Identify related and contrary cases
9. Define the concept
10. Identify implications and recommendations
for practice

METHODOLOGY
Stages of analysis:
1. Determine the aims or purposes of analysis
2. Select concept of interest and associated
expressions (surrogate/related terms)
3. Identify all the uses of the concept
4. Source and select evidence
5. Determine attributes of the concept
6. Establish references, antecedents and
consequences of the concept
7. Present a model case - testing tentative criteria
8. Identify related and contrary cases
9. Define the concept
10. Identify implications and recommendations
for practice

Evidence
� Experience
- those who want to donate and are prevented
- those who do not want to donate and feel obligated
� Culture (blood donors, organ donation) conversations /
newspaper archive / fiction …Factual accounts,
interpretations
� Media pressure (donor registry, headlines)
� Sibling experience

ATTRIBUTES
• Moral wrongdoing
• By choice or by legal, ethical, economic, health
or religious constraints
• Anguish
• Stems from perceived wrongdoing
• Has a moral component
• Moral burden
• Real or perceived moral responsibility
• Constraint
• On moral action
• Restricted autonomy
• Poor resources

ANTECEDENTS
• Moral certainty
• contrasts with moral dilemma
• Selection
• TT health check, gender, ABO, infectious diseases
• Selfishness
• Family dynamics
• greater probability of compatibility
• share a history, present and future
• exposure to scrutiny
• May deny moral autonomy
• may intensify moral burden

CONSEQUENCES
• Moral residue
• lingering negative feelings guilt, shame, regret
and failure
• Guilt
• result of the perception of wrongdoing
• Fractured family relationships
• breakdown in communication and affiliation
• powerful sanctions possible
• Doubt
• A different action, a different outcome?
• Tissue type result

PROPOSAL
The concept of MD can be applied when five
distinct conditions are met:
� A specific moral concern is present
� Moral integrity is threatened
� Constraints on action are identified
� Action is perceived as wrongdoing
� Anguish is experienced

CONCLUSIONS
1. Nursing practice may have an impact on the
development of MD
2. Constraints that prevent siblings from acting in line
with their moral values can be internal or external,
real, or perceived
3. MD can be prevented or minimised by any
strategies that remove an antecedent or an
attribute

DO I CAUSE MD?
� contributing to the moral burden (group and individual
discussions)
� exposing siblings to selection criteria at a late stage in
a decision making process
� not addressing authority/autonomy imbalance
� not challenging the culture of expectation / obligation

CONCLUSIONS
1. Nursing practice may have an impact on the
development of MD
2. Constraints that prevent siblings from acting in line
with their moral values can be internal or external,
real, or perceived
3. MD can be prevented or minimised by any
strategies that remove an antecedent or an
attribute

CONCLUSIONS
1. Nursing practice may have an impact on the
development of MD
2. Constraints that prevent siblings from acting in line
with their moral values can be internal or external,
real, or perceived
3. MD can be prevented or minimised by any
strategies that remove an antecedent or an
attribute

RECOMMENDATIONS
� Donor counselling PRIOR to tissue typing
� risks, side-effects, complications, health history, moral issues
� Vigilance for values and actions that are not in
synchrony
� Early health assessment (obvious exclusions)
� Non-judgmental approach

CHANGES IN PRACTICE
� Less emphasis on group donor counselling – a more
individualised approach (letter, email, local sampling)
� Advanced nursing role in health assessment
� Algorithm to clarify opt out points (exit
strategies before tissue typing and before
revealing results to pt)
� Values clarification exercise

VALUES CLARIFICATION EXERCISE
Stem Cell Donation - Helping You to Make a Decision
These questions are designed to help you think about what the best course
of action is for you. Your answers are entirely private; there is no
obligation to share these thoughts with anyone.
1. What are your beliefs in relation to donation? (I believe that…)
2. What factors would hinder you from donating?
3. What factors would encourage you to donate?

HAI
All about sharing information
Susan.piggott@belfasttrust.hscni.net