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ELECTRONIC SUPPLEMENTARY MATERIAL
Online Resource 1.Survey tool.
Decisionmaking in decompressive craniectomy for malignant MCA syndrome
Thank you for agreeing to participate in this study.
Some cerebrovascular accidents (strokes) can lead to lifethreatening brain swelling (malignant MCA syndrome). Decompressive craniectomy is a neurosurgical operation that involves removing a piece of skull to provide extra space for the brain to swell. This surgery is the only definitive option known to improve survival for lifethreatening brain swelling following a stroke. However, the decision to operate on a patient can be complex, based on a combination of medical, social and ethical considerations.
Current evidence in patients under the age of 60 has demonstrated the following about decompressive craniectomy for malignant MCA syndrome:
1. The surgery improves survival at 1 year by 50% (78% vs 29%)
2. The surgery doubles the chance of being independent at 1 year (43% vs 21%)
3. The surgery increases the probability of survival in a condition requiring assistance by 15 times at 1 year (2% vs 31%)[Vahedi et al., Lancet Neurology, 2007].
There are currently no practice guidelines for when it is appropriate to offer a patient this procedure and the decision may depend on perception about the futility of care.
You will be presented with a series of vignettes involving decompressive craniectomy for malignant MCA syndrome. The first part of each vignette will describe the patient’s baseline characteristics – these are the only aspects that change from case to case and they are highlighted in red. The remainder of the vignette will be the same – all patients undergo the same course in hospital after their stroke. You will then be asked whether you agree or disagree with offering surgical decompression for each particular patient.
The variation in clinical practice in scenarios without clear "ethical" guidelines is a topic of growing interest. Your responses will help elucidate the importance of patientspecific factors in the decisionmaking process.
Thank you again for participating in this study.
Dr. Judy Illes, Professor of Neurology and Director, National Core of Neuroethics
Dr. Charles Haw, Professor of Neurosurgery
Dr. Danny Mendelsohn, PGY-1 Neurosurgery resident
1. What is your position?
Neurosurgery Staff
Neurosurgery Resident
Neurology Staff
Neurology Resident
Registered Nurse
Physiotherapist
Occupational Therapist
Speech Language Pathologist
Pharmacist
Social Worker
Dietician
Other (please specify)
2. How many years have you been in practice?
<5 years
59 years
1014 years
>15 years
3. How many years have you been in training?
1
2
3
4
5
6
7
4. What is your gender?
Male
Female
Prefer not to disclose
5. What is your age?
<21
2130
3140
4150
5160
>60
You will be presented with a series of vignettes involving decompressive craniectomy for malignant MCA syndrome. The first part of each vignette will describe the patient’s baseline characteristics – these are the only aspects that change from case to case and they are highlighted in red. The remainder of the vignette will be the same – all patients undergo the same course in hospital after their stroke. You will then be asked whether you agree or disagree with offering surgical decompression for each particular patient.
6. A previously healthy and independent 55 yearold patient suffers a massive stroke on the right side of the brain. The patient is very weak in the left arm and leg.
Three days later, the patient deteriorates neurologically and a CT scan reveals lifethreateningbrainswelling. Surgical decompression can potentially save the patient’s life, but the patient is expected to have permanent weakness in the left arm and leg.
It is appropriate to offer the patient a decompressive craniectomy.
Strongly Disagree - Strongly Agree (9 point Likert scale)
Additional comments (optional):
7. A previously healthy and independent 55 yearold patient suffers a massive stroke on the left side of the brain. The patient is very weak in the right arm and leg and has severe language comprehension and speech production problems.
Three days later, the patient deteriorates neurologically and a CT scan reveals life threateningbrainswelling. Surgical decompression can potentially save the patient’s life, but the patient is expected to have permanent weakness in the right arm and leg and permanent language comprehension and speech production problems.
It is appropriate to offer the patient a decompressive craniectomy.
Strongly Disagree - Strongly Agree (9 point Likert scale)
Additional comments (optional):
8. A previously healthy and independent 70 yearold patient suffers a massive stroke on the right side of their brain. The patient is very weak in the left arm and leg.
Three days later, the patient deteriorates neurologically and a CT scan reveals life threateningbrainswelling. Surgical decompression can potentially save the patient’s life, but the patient is expected to have permanent weakness in the left arm and leg.
It is appropriate to offer the patient a decompressive craniectomy.
Strongly Disagree - Strongly Agree (9 point Likert scale)
Additional comments (optional):
9. A previously healthy and independent 70 yearold patient suffers a massive stroke on the left side of the brain. The patient is very weak in the right arm and leg and has severe language comprehension and speech production problems.
Three days later, the patient deteriorates neurologically and a CT scan reveals life threateningbrainswelling. Surgical decompression can potentially save the patient’s life, but the patient is expected to have permanent weakness in the right arm and leg and permanent language comprehension and speech production problems.
It is appropriate to offer the patient a decompressive craniectomy.
Strongly Disagree - Strongly Agree (9 point Likert scale)
Additional comments (optional):
10. A 70 yearold patient suffers a massive stroke on the right side of their brain. The patient is very weak in the left arm and leg. Prior to the stroke, the patient had dementia and lived in a nursing home. The patient could previously feed themselves but were unable to maintain personal hygiene without assistance and frequently forgot who their grandchildren were.
Three days later, the patient deteriorates neurologically and a CT scan reveals life threateningbrainswelling. Surgical decompression can potentially save the patient’s life, but the patient is expected to have permanent weakness in the left arm and leg.
It is appropriate to offer the patient a decompressive craniectomy.
Strongly Disagree - Strongly Agree (9 point Likert scale)
Additional comments (optional):
11. A previously healthy and independent 70 yearold patient suffers a massive stroke on the right side of the brain. The patient is very weak in the left arm and leg. The patient has no living relatives and has lost touch with all their friends.
Three days later, the patient deteriorates neurologically and a CT scan reveals life threateningbrainswelling. Surgical decompression can potentially save the patient’s life, but the patient is expected to have permanent weakness in the left arm and leg.
It is appropriate to offer the patient a decompressive craniectomy.
Strongly Disagree - Strongly Agree (9 point Likert scale)
Additional comments (optional):
12. A 70 yearold patient suffers a massive stroke on the right side of the brain. The patient is very weak in the left arm and leg. The patient's past medical history includes chronic kidney disease treated with dialysis and two previous heart attacks.
Three days later, the patient deteriorates neurologically and a CT scan reveals life threateningbrainswelling. Surgical decompression can potentially save the patient’s life, but the patient is expected to have permanent weakness in the left arm and leg.
It is appropriate to offer the patient a decompressive craniectomy.
Strongly Disagree - Strongly Agree (9 point Likert scale)
Additional comments (optional):
13. A previously healthy and independent 70 yearold patient suffers a massive stroke on the right side of the brain. The patient is very weak in the left arm and leg. Prior to the stroke, the patient was a threetime gold medalist in the Geriatric Olympics in the sport of tennis.
Three days later, the patient deteriorates neurologically and a CT scan reveals life threateningbrainswelling. Surgical decompression can potentially save the patient’s life, but the patient is expected to have permanent weakness in the left arm and leg.
It is appropriate to offer the patient a decompressive craniectomy.
Strongly Disagree - Strongly Agree (9 point Likert scale)
Additional comments (optional):
14. This study has investigated the importance of the following factors in the decision to offer surgical decompression for malignant MCA syndrome.
Baseline functional status
Comorbidities
Patient age
Permanent language impairment
Social supports
Are there any other factors that are important for decisionmaking in this case?
No
The following factor is important:
15. Please rate the importance of the following factors in the decision to offer surgical decompression for malignant MCA syndrome.
Permanent language impairment
Comorbidities
Baseline functional status
Patient age
Social supports
Not important at all - Extremely important (9 point Likert scale)
16. Please rank the following factors in the decision to offer surgical decompression for malignant MCA syndrome (1 = most important, 6 = least important).
Permanent language impairment
Comorbidities
Baseline functional status
Patient age
Social supports
[Factor entered from question 14]
Additional comments (optional):
17. The following questions pertain to the appropriate use of specifically decompressive craniectomy for malignant MCA syndrome.
It is appropriate to withhold this potentially lifesaving operation based on:
Extent of neurologic deficits anticipated
Medical Comorbidities
Baseline functional status
Patient age
Degree of social supports
Strongly Disagree - Strongly Agree (9 point Likert scale)
18. It is appropriate to withhold this potentially lifesaving operation if the outcome is considered medically futile irrespective of the family’s wishes:
Strongly Disagree - Strongly Agree (9 point Likert scale)
19. In situations where it is unclear if it is appropriate to perform this operation, rate your agreement with each of the following steps:
Discuss the risks and benefits with the family/substitute decisionmaker and allow that person to decide
Discuss the risks and benefits with the family/substitute decisionmaker but do not offload the decision onto them
Discuss the risks and benefits with other clinicians
Discuss the risks and benefits with allied health professionals (eg. nurses, OT, PT) on the medical team
Discuss the risks and benefits with the clinical ethics team
When in doubt, perform the surgery
When in doubt, opt for conservative (nonoperative) management
I don’t know
Strongly Disagree - Strongly Agree (9 point Likert scale)
Other (please specify)
20. In situations where it is unclear if it is appropriate to perform this potentially lifesaving operation, rate the clinical ethics principles in order of importance for decisionmaking:
Autonomy the right to refuse or choose treatment
Beneficence act in the best interest of the patient
Nonmaleficence first, do no harm
Justice fair distribution of health resources
Other (please specify)
21. Please add any comments here.
Thank you for participating in this study.
Online Resource 2.Demographic characteristics of study participants.
Neurosurgery Staff/Residents / Neurology Staff/Residents / Nurses & Allied Health / TotalAge / 21-30 / 6 (31.6%) / 13 (37.1%) / 12 (40.0%) / 31 (36.9%)
31-40 / 5 (26.3%) / 7 (20.0%) / 10 (33.3%) / 22 (26.2%)
41-50 / 5 26.3%) / 7 (20.0%) / 6 (20.0%) / 18 (21.4%)
51-60 / 0 / 5 (14.3%) / 2 (6.7%) / 7 (8.3%)
>60 / 3 (15.8%) / 3 (8.6%) / 0 / 6 (7.1%)
Gender / Male / 18 (94.7%) / 15 (44.1%) / 2 (6.7%) / 35 (42.2%)
Female / 0 / 16 (47.1%) / 28 (93.3%) / 44 (53.0%)
Prefer not to disclose / 1 (5.3%) / 3 (8.8%) / 0 / 4 (4.8%)
Training or
Years in Practice / Training / 7 (36.8%) / 15 (42.9%) / 0 / 22 (25.9%)
< 5 years / 3 (15.8%) / 5 (14.3%) / 9 (29.0%) / 17 (20.0%)
5-9 years / 3 (15.8%) / 1 (2.9%) / 10 (32.3%) / 14 (16.5%)
10-14 years / 1 (5.3%) / 4 (11.4%) / 4 (12.9%) / 9 (10.6%)
>15 years / 5 (26.3%) / 10 (28.6%) / 8 (25.8%) / 23 (27.1%)
Online Resource 3.Rating of agreement with options proposed for managing situations in which it is unclear whether or not the patient will benefit from hemicraniectomy.
Proposed Option / Average 9-point Likert Rating / Percentage AgreementDiscuss the risks and benefits with other clinicians / 7.43 / 82.6
Discuss the risks and benefits with the substitute decision-maker and allow that person to decide / 6.61 / 73.4
Discuss the risks and benefits with the clinical ethics team / 6.27 / 69.7
Discuss the risks and benefits with the substitute decision-maker but do not offload the decision onto them / 6.12 / 68.0
Discuss the risks and benefits with allied health professionals (eg. nurses, OT, PT) on the medical team / 5.64 / 62.7
When in doubt, opt for conservative (non-operative) management / 4.81 / 53.4
When in doubt, perform the surgery / 4.33 / 48.1
I don’t know / 4.10 / 45.6