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Disturbing and Distressing - The Tasks and
Dilemmas Associated with End of Life Care
Dr. Hannah Linane
Linane H. 1
, McVicker L.2
, Mongan O.2
, Connolly F.2
, Mannion E.1
, Waldron D.1
, Beatty S.1
Byrne D.2
1. Department of Palliative Medicine, University Hospital Galway.
2. NUI Galway.
Aims/Drivers of Study
1. Results of a recent Medical Council national trainee experience survey
(Your Training Counts, 2015 & 2016).
74% of interns did not feel well prepared for the physical/emotional
demands of clinical practice (1).
2. A second Medical Council Study (2016) looked at new entrants to the system (2)
This identified educational needs common to all entrants:
Communication Ethics Legal
Methods
• Design and distribution of anonymous questionnaire to SHOs in 2 teaching
hospitals affiliated with NUIG in Saolta.
• Development
• Ethical approval by Galway Research Ethics Committee
• Medical Council findings used to inform content
• Focus group and pilot
• Distress protocol
• Attempts to reduce researcher bias
• Purposive sampling technique
• SHOs - distributed at educational meetings and directly approached.
• Data collection Sept-Nov 2016.
• Analysis
• Data analysed using SPSS software package and kept on password protected
computer.
Methods: Sections
Demographics
Pronouncing Death,
Documentation
Notification and
Certification of Death
Communication with
Families
Physician WellbeingEthical Issues
Abbreviated PTSD Checklist – Civilian version (PCL-C)(9). Self-reported Likert scale (1 Not at all – 5 Extremely)
If you have experienced a patient death (within or outside the scenario of an arrest call):
1. Have you felt distressed?
2. Had repeated, disturbing memories, thoughts, or images of the incident?
3. Felt very upset when something reminded you of the incident?
4. Avoided activities or situations because they reminded you this stressful experience?
5. Feeling distant or cut off from other people?
6. Feeling angry or having angry outbursts?
7. Difficulty concentrating?
Results: Exposure
75 SHOs Mean length of practice - 29 months (range=72 months).
Response rate (75/175 = 43%)
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
Notified Coroner
Withdrawal of Active Management
Resus status
Discussion with Family
Cardiac Arrest
Pronounced Death
Total
Percentage >10 times
Total (n=75)
93% (39% >10 times)
89% (15% >10 times)
81% (27% >10 times)
73% (19% >10 times)
40.5% (5% >10 times)
25%
Percentage of SHOs
Results: Knowledge and Training
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
More training
Don’t know about AHD
No knowledge resources
• 65% Don’t know of resources if experiencing distress/low mood.
• 49% Don’t know about Advanced Healthcare Directives.
• 85% Would like more training.
Percentage of SHOs
• 49% Repeated disturbing memories.
• 59% Felt upset.
• 22% Avoided activities.
• 27% Felt distant or cut off from others.
• 22% Felt angry or had angry outbursts.
• 32% Had difficulties concentrating.
Results: Psychological Impact
Results: Psychological Distress
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
Difficulty concentrating
Angry/angry outbursts
Feeling distant/cut off
Avoided activies that reminded
Upset
Repeated,disturbed memories
Distressed
Admitted an element Moderate or more Extreme levels
(scored >3) (Scored 5)
32% | 6%
22% | 8% | 1%
27% | 8% | 1%
22% | 5.5%
59% | 23%
49% | 22% | 3%
90% | 53% | 6%
Percentage of SHOs
14% PTSD
Critical Incident Technique Interviews
Interviewee prompted about their experiences related to end of life care and
patient death and how/why it occurred.
• The 31 CIT interviews revealed the primary issues for junior doctors when delivering
end of life care and dealing with patient death.
• (1) Lack of knowledge of appropriate procedures and decorum for communicating
with family members
• (2) Feeling of being unprepared for the process of patient death
• (3) Lack of structured support in the aftermath of patient death
• (4) Perception in medical training that a patient being transferred to palliative care
indicated a failure on the part of the doctor
These factors combine to increase the distress which comes from a patient passing
away under the care of a doctor.
Critical Incident Technique Interviews
Interviewee prompted about their experiences related to end of life care and
patient death and how/why it occurred.
• “It was awful. It was awful to be an intern and have to say to someone- you are
going to die……I was really, really upset.”
• When initiating a discussion with a family that a coroners post mortem was required.
“I was carrying around a lot of guilt for something I thought I was genuinely doing in
the best interests of the patient. I am still resolving a lot of issues around it in my own
head.”
• Pronouncing a death
“I was actually quite scared….I jumped back with fear…3 years later...that ward still
reminds me.”
Discussion
/Summary
• Death - strong emotional impact.
• Distress and disturbance – risk of burnout.
Impacts quality of care and safety.
• Not just new entrant doctors.
• Current apprenticeship model - not sufficient.
• Not aware of resources for emotional support and would like
further training.
• An educational intervention is required to better prepare the
interns and SHOs. Change in culture, supportive environment,
access to help.
References
1. Irish Medical Council. Your Training Counts Trainee. Experiences of Clinical Learning
Environments in Ireland. 2015.
2. Irish Medical Council. 2016
3. Firth-Cozens J, Morrison L. Sources of stress and ways of coping in junior house officers.
Stress Medicine. 1989;5(2):121-126.
4. Mills J, McKimm J. Resilience: why it matters and how doctors can improve it. British
Journal Hospital Medicine. 2016;2;77(11):630-633.
5. Sanchez-Reilly S, Morrison L, Carey E, Bernacki R, O'Neill L, Kapo J et al. Caring for oneself
to care for others: physicians and their self-care. The Journal of Supportive Oncology.
2013;11(2):75-81.
6. Shanafelt T. Burnout and Self-Reported Patient Care in an Internal Medicine Residency
Program. Annals of Internal Medicine. 2002;136(5):358
7. West C, Huschka M, Novotny P, Sloan J, Kolars J, Habermann T et al. Association of
Perceived Medical Errors With Resident Distress and Empathy. JAMA. 2006;296(9):1071.
8. Shanafelt T, Balch C, Bechamps G, Russell T, Dyrbye L, Satele D et al. Burnout and Medical
Errors Among American Surgeons. Annals of Surgery. 2010;251(6):995-1000.
9. Weathers, F., Litz, B., Herman, D., Huska, J., & Keane, T. (October 1993). The PTSD
Checklist (PCL): Reliability, Validity, and Diagnostic Utility. Paper presented at the Annual
Convention of the International Society for Traumatic Stress Studies, San Antonio, TX

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Dr. Hanna Linane - Disturbing and Distressing - The Tasks and Dilemmas Associated with End of Life Care

  • 1. Disturbing and Distressing - The Tasks and Dilemmas Associated with End of Life Care Dr. Hannah Linane Linane H. 1 , McVicker L.2 , Mongan O.2 , Connolly F.2 , Mannion E.1 , Waldron D.1 , Beatty S.1 Byrne D.2 1. Department of Palliative Medicine, University Hospital Galway. 2. NUI Galway.
  • 2. Aims/Drivers of Study 1. Results of a recent Medical Council national trainee experience survey (Your Training Counts, 2015 & 2016). 74% of interns did not feel well prepared for the physical/emotional demands of clinical practice (1). 2. A second Medical Council Study (2016) looked at new entrants to the system (2) This identified educational needs common to all entrants: Communication Ethics Legal
  • 3. Methods • Design and distribution of anonymous questionnaire to SHOs in 2 teaching hospitals affiliated with NUIG in Saolta. • Development • Ethical approval by Galway Research Ethics Committee • Medical Council findings used to inform content • Focus group and pilot • Distress protocol • Attempts to reduce researcher bias • Purposive sampling technique • SHOs - distributed at educational meetings and directly approached. • Data collection Sept-Nov 2016. • Analysis • Data analysed using SPSS software package and kept on password protected computer.
  • 4. Methods: Sections Demographics Pronouncing Death, Documentation Notification and Certification of Death Communication with Families Physician WellbeingEthical Issues Abbreviated PTSD Checklist – Civilian version (PCL-C)(9). Self-reported Likert scale (1 Not at all – 5 Extremely) If you have experienced a patient death (within or outside the scenario of an arrest call): 1. Have you felt distressed? 2. Had repeated, disturbing memories, thoughts, or images of the incident? 3. Felt very upset when something reminded you of the incident? 4. Avoided activities or situations because they reminded you this stressful experience? 5. Feeling distant or cut off from other people? 6. Feeling angry or having angry outbursts? 7. Difficulty concentrating?
  • 5. Results: Exposure 75 SHOs Mean length of practice - 29 months (range=72 months). Response rate (75/175 = 43%) 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Notified Coroner Withdrawal of Active Management Resus status Discussion with Family Cardiac Arrest Pronounced Death Total Percentage >10 times Total (n=75) 93% (39% >10 times) 89% (15% >10 times) 81% (27% >10 times) 73% (19% >10 times) 40.5% (5% >10 times) 25% Percentage of SHOs
  • 6. Results: Knowledge and Training 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% More training Don’t know about AHD No knowledge resources • 65% Don’t know of resources if experiencing distress/low mood. • 49% Don’t know about Advanced Healthcare Directives. • 85% Would like more training. Percentage of SHOs
  • 7. • 49% Repeated disturbing memories. • 59% Felt upset. • 22% Avoided activities. • 27% Felt distant or cut off from others. • 22% Felt angry or had angry outbursts. • 32% Had difficulties concentrating. Results: Psychological Impact
  • 8. Results: Psychological Distress 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Difficulty concentrating Angry/angry outbursts Feeling distant/cut off Avoided activies that reminded Upset Repeated,disturbed memories Distressed Admitted an element Moderate or more Extreme levels (scored >3) (Scored 5) 32% | 6% 22% | 8% | 1% 27% | 8% | 1% 22% | 5.5% 59% | 23% 49% | 22% | 3% 90% | 53% | 6% Percentage of SHOs 14% PTSD
  • 9. Critical Incident Technique Interviews Interviewee prompted about their experiences related to end of life care and patient death and how/why it occurred. • The 31 CIT interviews revealed the primary issues for junior doctors when delivering end of life care and dealing with patient death. • (1) Lack of knowledge of appropriate procedures and decorum for communicating with family members • (2) Feeling of being unprepared for the process of patient death • (3) Lack of structured support in the aftermath of patient death • (4) Perception in medical training that a patient being transferred to palliative care indicated a failure on the part of the doctor These factors combine to increase the distress which comes from a patient passing away under the care of a doctor.
  • 10. Critical Incident Technique Interviews Interviewee prompted about their experiences related to end of life care and patient death and how/why it occurred. • “It was awful. It was awful to be an intern and have to say to someone- you are going to die……I was really, really upset.” • When initiating a discussion with a family that a coroners post mortem was required. “I was carrying around a lot of guilt for something I thought I was genuinely doing in the best interests of the patient. I am still resolving a lot of issues around it in my own head.” • Pronouncing a death “I was actually quite scared….I jumped back with fear…3 years later...that ward still reminds me.”
  • 11. Discussion /Summary • Death - strong emotional impact. • Distress and disturbance – risk of burnout. Impacts quality of care and safety. • Not just new entrant doctors. • Current apprenticeship model - not sufficient. • Not aware of resources for emotional support and would like further training. • An educational intervention is required to better prepare the interns and SHOs. Change in culture, supportive environment, access to help.
  • 12. References 1. Irish Medical Council. Your Training Counts Trainee. Experiences of Clinical Learning Environments in Ireland. 2015. 2. Irish Medical Council. 2016 3. Firth-Cozens J, Morrison L. Sources of stress and ways of coping in junior house officers. Stress Medicine. 1989;5(2):121-126. 4. Mills J, McKimm J. Resilience: why it matters and how doctors can improve it. British Journal Hospital Medicine. 2016;2;77(11):630-633. 5. Sanchez-Reilly S, Morrison L, Carey E, Bernacki R, O'Neill L, Kapo J et al. Caring for oneself to care for others: physicians and their self-care. The Journal of Supportive Oncology. 2013;11(2):75-81. 6. Shanafelt T. Burnout and Self-Reported Patient Care in an Internal Medicine Residency Program. Annals of Internal Medicine. 2002;136(5):358 7. West C, Huschka M, Novotny P, Sloan J, Kolars J, Habermann T et al. Association of Perceived Medical Errors With Resident Distress and Empathy. JAMA. 2006;296(9):1071. 8. Shanafelt T, Balch C, Bechamps G, Russell T, Dyrbye L, Satele D et al. Burnout and Medical Errors Among American Surgeons. Annals of Surgery. 2010;251(6):995-1000. 9. Weathers, F., Litz, B., Herman, D., Huska, J., & Keane, T. (October 1993). The PTSD Checklist (PCL): Reliability, Validity, and Diagnostic Utility. Paper presented at the Annual Convention of the International Society for Traumatic Stress Studies, San Antonio, TX