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: SectionsDemographics

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: Exposure75 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 InterviewsInterviewee 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 InterviewsInterviewee 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.

References1. Irish Medical Council. Your Training Counts Trainee. Experiences of Clinical Learning

Environments in Ireland. 2015.

2. Irish Medical Council. 2016

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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