(Published by S Honeybul and colleagues, in the Journal of Medical Ethics in 2015)
Written by Amy Lynch (Medical Student, Trinity College Dublin)
Edited by Lucia M Li.
Introduction
Traumatic brain Injuries (TBI) happen suddenly and often leave the patient incapacitated and unable to make decisions about their own medical treatment. In these situations, doctors must give the treatment that they believe will be in the patient’s best interest, and often consult the next of kin to get an idea of what a patient would want. These are complex decisions as they must be made quickly and patients unable to indicate what they want.
A major operation called a Decompressive Craniectomy is sometimes needed as a last resort in the treatment of some patients with TBI. In this operation a part of the skull is removed to allow space for the injured brain to swell. The decision to carry out this procedure is very difficult for both doctors and family members – while it can be a lifesaving operation, it may not be enough to save the patient from permanent and serious disabilities. These disabilities may be so severe that patients and their families may find them unacceptable to live with.
Methods
This study involved 20 patients who had had a decompressive craniectomy after their injury but had an “unfavourable outcome”. This means that they had severe disabilities and would be unable to lead independent lives. The patients and families in the study had lived with these disabilities for at least 3 years.
Patients were interviewed and asked whether they would still have wanted to have a life-saving Decompressive Craniectomy, if they had known what their eventual outcome would be. This is known as “retrospective consent”. Their families were separately interviewed and asked the same question, as well as other questions about the whole clinical journey, including whether they thought they received enough information about the likely outcome following the operation.
Results
Of the 20 patients interviewed, 13 were able to respond and, of this group, 10 (77%) felt they WOULD have given consent, knowing what their eventual outcome would be. 18 of the patients had family available for interview and, of this group, 10 (56%) said they WOULD have given retrospective consent.
Many of the families felt that the long-term implications were not discussed in an adequate manner at the time. Many families also felt that they were not consulted enough by the doctor that ultimately made the decision, especially because it was the families who were dealing with outcome.
Discussion
One important ‘take home message’ from this article is the need for comprehensive counselling and open discussions with the family about the realistic outcomes after a Decompressive Craniectomy. The decision is not just about life and death but the quality of life that the patient would likely have after the surgery.
An interesting idea that is also discussed in the article is that while an outcome is classed by doctors as “unfavourable” and may have been unacceptable to the patient previous to their TBI, humans have an incredible ability to adapt. While there is inevitably a period of shock and initial adjustment, ultimately the patient and their families may be able to learn to cope and live fulfilling lives, even with a high degree of disability.
Written by Amy Lynch (Medical Student, Trinity College Dublin)
Edited by Lucia M Li.
Introduction
Traumatic brain Injuries (TBI) happen suddenly and often leave the patient incapacitated and unable to make decisions about their own medical treatment. In these situations, doctors must give the treatment that they believe will be in the patient’s best interest, and often consult the next of kin to get an idea of what a patient would want. These are complex decisions as they must be made quickly and patients unable to indicate what they want.
A major operation called a Decompressive Craniectomy is sometimes needed as a last resort in the treatment of some patients with TBI. In this operation a part of the skull is removed to allow space for the injured brain to swell. The decision to carry out this procedure is very difficult for both doctors and family members – while it can be a lifesaving operation, it may not be enough to save the patient from permanent and serious disabilities. These disabilities may be so severe that patients and their families may find them unacceptable to live with.
Methods
This study involved 20 patients who had had a decompressive craniectomy after their injury but had an “unfavourable outcome”. This means that they had severe disabilities and would be unable to lead independent lives. The patients and families in the study had lived with these disabilities for at least 3 years.
Patients were interviewed and asked whether they would still have wanted to have a life-saving Decompressive Craniectomy, if they had known what their eventual outcome would be. This is known as “retrospective consent”. Their families were separately interviewed and asked the same question, as well as other questions about the whole clinical journey, including whether they thought they received enough information about the likely outcome following the operation.
Results
Of the 20 patients interviewed, 13 were able to respond and, of this group, 10 (77%) felt they WOULD have given consent, knowing what their eventual outcome would be. 18 of the patients had family available for interview and, of this group, 10 (56%) said they WOULD have given retrospective consent.
Many of the families felt that the long-term implications were not discussed in an adequate manner at the time. Many families also felt that they were not consulted enough by the doctor that ultimately made the decision, especially because it was the families who were dealing with outcome.
Discussion
One important ‘take home message’ from this article is the need for comprehensive counselling and open discussions with the family about the realistic outcomes after a Decompressive Craniectomy. The decision is not just about life and death but the quality of life that the patient would likely have after the surgery.
An interesting idea that is also discussed in the article is that while an outcome is classed by doctors as “unfavourable” and may have been unacceptable to the patient previous to their TBI, humans have an incredible ability to adapt. While there is inevitably a period of shock and initial adjustment, ultimately the patient and their families may be able to learn to cope and live fulfilling lives, even with a high degree of disability.