JBUR-4297; No. of Pages 2 burns xxx (2014) xxx–xxx
Available online at www.sciencedirect.com
ScienceDirect journal homepage: www.elsevier.com/locate/burns
Editorial
Death and the burn patient: Who, how and when
The death of a burn patient often occurs only after a decision has been made to withhold or withdraw treatment. This is especially so in well-resourced health care systems, where overall mortality in burns patients is low. In this setting, if mortality is to continue to be a meaningful measure of quality of burn care, an understanding of who dies and how becomes as important as knowing how many people die. In addition, a consideration of the issues surrounding end of life decision making is integral to interpreting and understanding mortality rates. There is thus a need for the adoption of an agreed standardized method of classifying deaths when reporting on mortality in burn units. When reviewing deaths in our unit, we attempt to classify the management plan with respect to treatment as follows: ‘Palliative care’ is defined as treatment which provides relief from pain and discomfort with the knowledge that the patient is not expected to survive the injury, and this decision is made within the first 24 h of presentation notwithstanding that initial attempts at resuscitation may have been attempted. ‘Active treatment’ is defined as treatment provided with a view to the patient surviving the injury and progressing toward a meaningful recovery. ‘Withdrawal of care’ is defined as the cessation of active treatment following a decision to discontinue active management made after the 24 h period post admission. We hope that by reporting on specific treatment decisions prior to death in this way, accurate benchmarking of mortality as a result of treatment failure will be facilitated. It will also become possible, if such an approach is generally adopted, to produce a literature which informs debate regarding end of life treatment decisions, and which supports clinicians in their endeavor to make appropriate decisions for and with individual patients. Transparency in reporting will also help to guard against a culture of therapeutic nihilism developing within individual units with respect to treating high risk patients: the decision not to treat because of the perceived likelihood of death may become self-reinforcing. In our institution, more than half the patients who die do so after palliative care is instituted within 24 h of admission. Actively treated burn patients usually die after withdrawal of
active treatment; when deterioration or failure to respond despite treatment prompts re-evaluation of the initial decision to treat. In practice this may occur after weeks of treatment, and has significant repercussions for the patient, family and burn unit staff. It is our contention that the interests of all concerned are best served by active consideration of appropriateness of treatment early in the patient’s clinical course. This is straightforward in cases where active treatment is certain to be futile (for example the 84 year old with a 90% TBSA burn). In less clear cases, it is necessary to make a judgment based on a number of factors, and a definitive decision may need to be delayed to allow relevant information to be obtained. This may include determining to the extent possible, views and wishes of the patient and family members, other comorbidities, such as chronic pain and psychological health, and the capacity to return to, if not pre-morbid function, at least a state of independent living [1]. However the principle of early engagement in active decision making will help to avoid confusion about therapeutic goals and burdensome unnecessary treatments. The clinician who adopts a passive approach and waits for treatments to fail does not fulfill the responsibility conferred upon him or her to act in the best interests of the patient. Medical care is delivered within a legal framework which may influence treatment choices. In the Australian State of Victoria, it is lawful to withhold treatment if the treating clinician considers it to be futile, burdensome in comparison to potential advantages, or not in the patient’s best interests. While the right of competent patients to refuse treatment appears universal, this is by no means true of the right to demand treatment, so the guiding principle for treating clinicians most usefully becomes the universal requirement to act in what is perceived to be the patient’s best interests, and this may result in a decision to palliate in the absence of a truly objective zero chance of survival. In practice, considerations regarding quality of life and potential for rehabilitation are of particular relevance when making treatment decisions in the elderly population, who have higher mortality and worse functional outcomes [2].
Please cite this article in press as: Cleland H. Death and the burn patient: Who, how and when. Burns (2014), http://dx.doi.org/10.1016/ j.burns.2014.02.004
JBUR-4297; No. of Pages 2
2
burns xxx (2014) xxx–xxx
While these patients provided with palliative care in our institution are deemed to have minimal chance of recovery, as assessed by at least 2 senior clinicians, multiple factors are considered in the making of this decision, including likely quality of life, potential complications, the patient’s wishes and family knowledge of likely patient choices. Fit young patients with no associated injury are actively treated unless treating surgeons can see no way of ultimately achieving wound cover (i.e. are convinced that there are insufficient donor sites). The subjective and individual nature of some of these judgements is well recognized: in terms of age and % TBSA burn, there is considerable overlap between actively treated and palliated patients. Hollander [3] has suggested that futility may best be conceptualized as a kind of gestalt, and only recognizable as a particular pattern of clinical features in an individual patient. Many clinical decisions are made in the context of some degree of uncertainty. In cases where the best way to proceed may not be obvious, we do not consider that the default position should necessarily be active treatment. We do consider that the clinician has a duty to act in the patient’s best interests, when the correct consideration becomes not whether anything more can be done for our patients but whether anything more should be done [4]. Mortality rates are the main parameter for determining success in major burn care; however they should not be the only metric used to measure successful treatment. Unfortunately, the burn care community is yet to develop agreed functional outcome measures, and long term outcome data remains deficient in this area. While a ‘wrong’ decision to palliate is harmful to a patient, we must also consider that a ‘wrong’ decision not to palliate also has potential to cause suffering and harm to patients and their families. This ‘wrong’ decision may result in a patient dying after a prolonged and painful sequence of treatments, or surviving to a life of suffering.
Acknowledgements Dr. Patrick Maher, MBBS (Hons) LLB (Hons) MBA; Victorian Adult Burns Service Alfred Hospital Melbourne Australia, contributed to the development of the ideas and concepts contained in this article.
references
[1] Bloemsma GC, Dokter J, Boxma H, Oen IMMH. Mortality and causes of death in a burn centre. Burns 2008;34:1103–7. [2] Klein MB, Lezotte DC, Heltshe S, Fauerbach J, Holavanahalli RK, Rivara FP, et al. Functional and psychosocial outcomes of older adults after burn injury: results from a multicenter database of severe burn injury. J Burn Care Res 2011;32(1):66–78. [3] den Hollander D. Medical futility and the burns patient. Burns )2013;(March) [Epub ahead of print]. [4] Cleland H, Mahar P. End-of-life decision making – where have all the surgeons gone? ANZ J Surg 2009;79:865–75.
Heather Clelanda,b,* Victorian Adult Burns Service (VABS), Alfred Hospital, Melbourne, Australia b Department of Surgery, Central & Eastern Clinical School, Monash University, Australia a
*Burns Unit, Alfred Hospital, Commercial Road, Melbourne 3000, Australia E-mail address: [email protected] (H. Cleland) Accepted 9 February 2014 0305-4179/ # 2014 Published by Elsevier Ltd and ISBI. http://dx.doi.org/10.1016/j.burns.2014.02.004
Please cite this article in press as: Cleland H. Death and the burn patient: Who, how and when. Burns (2014), http://dx.doi.org/10.1016/ j.burns.2014.02.004
Available online at www.sciencedirect.com
ScienceDirect journal homepage: www.elsevier.com/locate/burns
Editorial
Death and the burn patient: Who, how and when
The death of a burn patient often occurs only after a decision has been made to withhold or withdraw treatment. This is especially so in well-resourced health care systems, where overall mortality in burns patients is low. In this setting, if mortality is to continue to be a meaningful measure of quality of burn care, an understanding of who dies and how becomes as important as knowing how many people die. In addition, a consideration of the issues surrounding end of life decision making is integral to interpreting and understanding mortality rates. There is thus a need for the adoption of an agreed standardized method of classifying deaths when reporting on mortality in burn units. When reviewing deaths in our unit, we attempt to classify the management plan with respect to treatment as follows: ‘Palliative care’ is defined as treatment which provides relief from pain and discomfort with the knowledge that the patient is not expected to survive the injury, and this decision is made within the first 24 h of presentation notwithstanding that initial attempts at resuscitation may have been attempted. ‘Active treatment’ is defined as treatment provided with a view to the patient surviving the injury and progressing toward a meaningful recovery. ‘Withdrawal of care’ is defined as the cessation of active treatment following a decision to discontinue active management made after the 24 h period post admission. We hope that by reporting on specific treatment decisions prior to death in this way, accurate benchmarking of mortality as a result of treatment failure will be facilitated. It will also become possible, if such an approach is generally adopted, to produce a literature which informs debate regarding end of life treatment decisions, and which supports clinicians in their endeavor to make appropriate decisions for and with individual patients. Transparency in reporting will also help to guard against a culture of therapeutic nihilism developing within individual units with respect to treating high risk patients: the decision not to treat because of the perceived likelihood of death may become self-reinforcing. In our institution, more than half the patients who die do so after palliative care is instituted within 24 h of admission. Actively treated burn patients usually die after withdrawal of
active treatment; when deterioration or failure to respond despite treatment prompts re-evaluation of the initial decision to treat. In practice this may occur after weeks of treatment, and has significant repercussions for the patient, family and burn unit staff. It is our contention that the interests of all concerned are best served by active consideration of appropriateness of treatment early in the patient’s clinical course. This is straightforward in cases where active treatment is certain to be futile (for example the 84 year old with a 90% TBSA burn). In less clear cases, it is necessary to make a judgment based on a number of factors, and a definitive decision may need to be delayed to allow relevant information to be obtained. This may include determining to the extent possible, views and wishes of the patient and family members, other comorbidities, such as chronic pain and psychological health, and the capacity to return to, if not pre-morbid function, at least a state of independent living [1]. However the principle of early engagement in active decision making will help to avoid confusion about therapeutic goals and burdensome unnecessary treatments. The clinician who adopts a passive approach and waits for treatments to fail does not fulfill the responsibility conferred upon him or her to act in the best interests of the patient. Medical care is delivered within a legal framework which may influence treatment choices. In the Australian State of Victoria, it is lawful to withhold treatment if the treating clinician considers it to be futile, burdensome in comparison to potential advantages, or not in the patient’s best interests. While the right of competent patients to refuse treatment appears universal, this is by no means true of the right to demand treatment, so the guiding principle for treating clinicians most usefully becomes the universal requirement to act in what is perceived to be the patient’s best interests, and this may result in a decision to palliate in the absence of a truly objective zero chance of survival. In practice, considerations regarding quality of life and potential for rehabilitation are of particular relevance when making treatment decisions in the elderly population, who have higher mortality and worse functional outcomes [2].
Please cite this article in press as: Cleland H. Death and the burn patient: Who, how and when. Burns (2014), http://dx.doi.org/10.1016/ j.burns.2014.02.004
JBUR-4297; No. of Pages 2
2
burns xxx (2014) xxx–xxx
While these patients provided with palliative care in our institution are deemed to have minimal chance of recovery, as assessed by at least 2 senior clinicians, multiple factors are considered in the making of this decision, including likely quality of life, potential complications, the patient’s wishes and family knowledge of likely patient choices. Fit young patients with no associated injury are actively treated unless treating surgeons can see no way of ultimately achieving wound cover (i.e. are convinced that there are insufficient donor sites). The subjective and individual nature of some of these judgements is well recognized: in terms of age and % TBSA burn, there is considerable overlap between actively treated and palliated patients. Hollander [3] has suggested that futility may best be conceptualized as a kind of gestalt, and only recognizable as a particular pattern of clinical features in an individual patient. Many clinical decisions are made in the context of some degree of uncertainty. In cases where the best way to proceed may not be obvious, we do not consider that the default position should necessarily be active treatment. We do consider that the clinician has a duty to act in the patient’s best interests, when the correct consideration becomes not whether anything more can be done for our patients but whether anything more should be done [4]. Mortality rates are the main parameter for determining success in major burn care; however they should not be the only metric used to measure successful treatment. Unfortunately, the burn care community is yet to develop agreed functional outcome measures, and long term outcome data remains deficient in this area. While a ‘wrong’ decision to palliate is harmful to a patient, we must also consider that a ‘wrong’ decision not to palliate also has potential to cause suffering and harm to patients and their families. This ‘wrong’ decision may result in a patient dying after a prolonged and painful sequence of treatments, or surviving to a life of suffering.
Acknowledgements Dr. Patrick Maher, MBBS (Hons) LLB (Hons) MBA; Victorian Adult Burns Service Alfred Hospital Melbourne Australia, contributed to the development of the ideas and concepts contained in this article.
references
[1] Bloemsma GC, Dokter J, Boxma H, Oen IMMH. Mortality and causes of death in a burn centre. Burns 2008;34:1103–7. [2] Klein MB, Lezotte DC, Heltshe S, Fauerbach J, Holavanahalli RK, Rivara FP, et al. Functional and psychosocial outcomes of older adults after burn injury: results from a multicenter database of severe burn injury. J Burn Care Res 2011;32(1):66–78. [3] den Hollander D. Medical futility and the burns patient. Burns )2013;(March) [Epub ahead of print]. [4] Cleland H, Mahar P. End-of-life decision making – where have all the surgeons gone? ANZ J Surg 2009;79:865–75.
Heather Clelanda,b,* Victorian Adult Burns Service (VABS), Alfred Hospital, Melbourne, Australia b Department of Surgery, Central & Eastern Clinical School, Monash University, Australia a
*Burns Unit, Alfred Hospital, Commercial Road, Melbourne 3000, Australia E-mail address: [email protected] (H. Cleland) Accepted 9 February 2014 0305-4179/ # 2014 Published by Elsevier Ltd and ISBI. http://dx.doi.org/10.1016/j.burns.2014.02.004
Please cite this article in press as: Cleland H. Death and the burn patient: Who, how and when. Burns (2014), http://dx.doi.org/10.1016/ j.burns.2014.02.004
