The Child in Pain, BRAIN, and Neuroethical Issues in Pediatric Pain Research and Care

BY JAMES GIORDANO, PhD

A February 4, 2016 editorial in the Boston Globe addressed the recent Food and Drug Administration (FDA) approval of the opiate analgesic oxycodone (brand named OxyContin) for use in children. This has raised concerns about the relative safety and possible effects of such compounds, as well as the roles of industry and federal government in establishing guidelines and policies for the use of drugs – or any medical intervention. Pediatric pain can incur a host of lifelong neuro-biopsychosocial effects. Moreover, pediatric pain care is complicated by practical and legal issues of long-term and often escalated dosing of opioids, and there is a paucity of safety data and information about potential long-terms risks to the developing brain associated with commonly used analgesics in this fragile population.

Both the dictates of the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) initiative, and invocations of the Presidential Commission for the Study of Bioethical Issues speak to the imperative to translate brain research into viable clinical uses. In light of this, it becomes important to ask if and how novel neurotechnologies can meet the challenges and opportunities of assessing and treating pediatric pain. Research to date has shown promise: For example, neuroimaging studies have sought to identify and establish brain phenotypes for pain. As well, neurogenomics and proteomics may afford an understanding of pediatric pain syndromes and sensitivities to various pharmacotherapeutics. Such studies support the capability and potential clinical utility of neurotechnologically-based assessments. Interventional neuroscientific and neurotechnological techniques, including transcranial and in-dwelling approaches to neuromodulation (such as transcranial magnetic and electrical stimulation, (Moreno-Duarte, et al.; Moisset, et al.; Avery, et al.; Fagerlund, et al.) and forms of deep brain stimulation) (Russo, et al.; Gosset, et al.; Boccard, et al.), and highly specific analgesic ligands and novel pharmaceutical delivery preparations (Tseng, et al.; Healy, et al.; Molet, et al.), may each and all have value in augmenting – or in certain circumstances, perhaps replacing – other methods of pain control.

But any such view to improved approaches to pediatric pain care must also acknowledge a host of neuroethical issues. Thus, while the use of assessment neurotechnologies may be seen as relatively low risk, we must still consider potential burdens and harms of over- or mis-reliance upon perceived objectivity, misdiagnosis, and bias and stigma (of predisposition to pain, and in the subsequent provision of care and social regard). And while interventional neurotechnologies offer great potential to effectively mitigate certain types of pain, we must acknowledge the intersection of unknowns arising from a tentative understanding of the brain, nascent neurotechnology, and the possible longitudinal effects of altering brain structure and function during development.

On one hand the need to address pediatric pain prompts calls for rapid translation of pain research to clinical assessment and care to lessen the burden of the suffering child. On the other, consideration, if not caution must be taken to avoid burdens and harms that may occur as a result of heightened expediency from bench-to-bedside. Tension between these motives could impede the scope and progress of neurotechnologically-based approaches to assessment and treatment of pediatric pain. How then to proceed?

Working in collaboration with Dr. Stefan Friedrichsdorf and his team at the Children’s Hospital and Clinics of Minneapolis, our group has called for a balance, in which we advocate prudent evaluation and use of tools and techniques of brain science that are currently and soon to be available confronting the problem of pediatric pain. Building upon prior work of Liana Buniak, current research scholars Dr. Faisal Akram and Christelle Khadra are addressing the neuroethical issues generated by neurotechnological approaches to assessment and care of pediatric pain.

We posit that priority must be given to:

  • Funding the development and articulation of prospective, longitudinal research in pediatric pain management focusing on the benefits of various types of assessment and intervention, and long-term bio-psychosocial consequences incurred by implementing – or not implementing – particular approaches.
  • Sustained discourse and deliberation focusing on the neuroethical issues associated with pain care in children;
  • Ongoing examination – and possible revision – of guidelines, policies and laws to insure the probity of pediatric pain research and clinical care.

Our group is fond of the adage “measure twice and cut once”, and we unapologetically re-assert this summons here. But it’s important to note that we do not advocate this as an “either/or” proposition, but instead as a “both/and” obligation to meet the neuroethical opportunities and challenges afforded by advancing brain science in the clinical care of those most vulnerable, and to sustain the right and good use of neuroscience and its technologies in society across generations.

James Giordano PhD is Chief of the Neuroethics Studies Program at the Pellegrino Center for Clinical Bioethics, and is Professor in the Department of Neurology at Georgetown University Medical Center. Follow more of Professor Giordano’s work at explore.georgetown.edu, and http://www.neurobioethics.org.

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PAS: Unwise, Uncontrollable, and Unnecessary

BY G. KEVIN DONOVAN, MD, MA

 


 

Proponents of physician-assisted suicide point to real and tragic stories of suffering in individuals at the end of life. I’ve heard the stories and found them heartbreaking, making me and others want to do something to alleviate such situations. Unfortunately their solution would not make for a better society; they offer a cure that is worse than the disease. Their plan would be to change the laws governing suicide in every state. Currently, suicide is not illegal in any of the states or the District of Columbia. What they would change is the prohibition of assistance from an outside party, specifically in this case, a physician. This would result in a profound shift in the doctor-patient relationship, and the profession of medicine. For 2 millennia, physicians have striven to separate themselves from those who would deliberately cause harm. The Hippocratic oath, still taken in some form by most medical school graduates, states specifically “I will give no deadly medicine to anyone if asked, nor suggest such counsel.” The American Medical Association still states that participating in assisted suicide or euthanasia is incompatible with the role of the physician. Given this tradition and the importance of the doctor-patient relationship, it is unclear why proponents of PAS seek to legislate the involvement of physicians in assisting with the patient’s suicide. It is likely because of the trust relationship that exists between patients and their doctors, a trust that would be eroded in many cases by even so much as an offer from the physician to bring about their patient’s death.

Those who would like to see physician-assisted suicide (PAS) legislation passed assert that it would only be done with appropriate restrictions and protections. In fact, the only real protections are for the physicians who would involve themselves, with the law protecting them from any consequences of their involvement, short of felonious behavior. It also protects from discovery the records of the activities surrounding PAS – reports are to be sent to the Health Department, which collates them, issues an anonymized report, and destroys the originals. What is missing here is the adequate protection for patients. Although the law would initially restrict PAS to those with a terminal disease with six months to live, these restrictions, if viewed closely, can be seen to be indefensible. Changing the law to legalize PAS is based on an appeal for autonomy for the patient; it redefines medical care to include, as a medical good, aiding in the death of the patient. But if we enshrine this new medical good with the power of law, we will make it logically impossible to deny that good in multiple other cases.

Why should a patient have to be expected to die in six months, rather than 12? Why must they be terminally ill rather than suffering from chronic incurable illness? Why must they be able to take the medicine themselves -what if they are too weak, too debilitated, too demented – why can’t someone else give them a lethal dose? Why even should we restrict this new “benefit” to those over 18; we know children can suffer from terminal or chronic conditions. Shouldn’t this new medical benefit include them as well?

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When a legislature undertakes to change the law, they change the moral fabric of society as well. What was previously unthinkable is now legal, and soon becomes the norm. This places all patients at risk, not solely those whom society has disadvantaged by reason of poverty, color, or physical disability. An elderly grandmother, seen by those she loves to be suffering, may hear the suggestion of assisted suicide as something she would never have considered before now. But, now that it’s legal, it must be all right, and perhaps should be considered, not so much because it is her strong desire, but because she does not want to see her loved ones or their financial resources further exhausted.

Legislators should always be cautious when considering revolutionary changes in societal norms. They should certainly have a clear and strong understanding of the effects on the majority of the citizenry. This is particularly true in PAS when so many long-term consequences are still uncertain. It is even truer when the change in the law is designed to privilege the few at the risk of many. We are repeatedly told that only a few patients would likely seek the solution annually, and some of the data from other states suggest this may be the case, at least at first. We must ask ourselves if such a drastic change in the legal landscape for such a small number is wise or is necessary. We now know that we have long suspected: patients have already been obtaining assisted suicide from physicians willing to provide it, without any legal sanction. It appears that those who want assistance in their suicides can find it, even in places where it has not been authorized by law. It would be more difficult in all likelihood, and would give people pause before proceeding. Would this be such a bad thing, if someone had to consider that step carefully and with all due deliberation?

I do not think that assisting in suicide meets the deepest and most fundamental needs of the suffering patient. I think they need physical and emotional support, the reassurance that they are never considered a burden, and a loving presence to their very end. I know that there are those individuals who would disagree, and might want to proceed with their self-inflicted deaths whether it were legalized or not. They should not be judged, they should never be prosecuted for the attempt. As a society, we shouldn’t change the law in a way that might encourage their deaths, we should not take their hand and lead them towards that, and certainly shouldn’t make them feel they are subtly being pushed into it. But overall, the sick, the vulnerable, the suffering, and dying deserve so much better, and a truly caring society would provide them with no less.


 

ABOUT THE AUTHOR

G. Kevin Donovan, MD Director G. Kevin Donovan, MD, MA

G. Kevin Donovan, MD, MA is the Director of the Pellegrino Center for Clinical Bioethics at Georgetown University Medical Center. He is also a professor in the Department of Pediatrics at Georgetown University School of Medicine.

 

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Reference:

Emanuel, Fairclogh, et al. “Attitudes and Practices of US Oncologists regarding Euthanasia and Physician Assisted Suicide, Ann Intern Med2000; 133:527-532,www.annals.org.

Images: Creative Commons

The Child in Pain, BRAIN, and Neuroethical Issues in Pediatric Pain Research and Care

BY JAMES GIORDANO, PhD

A February 4, 2016 editorial in the Boston Globe addressed the recent Food and Drug Administration (FDA) approval of the opiate analgesic oxycodone (brand named OxyContin) for use in children. This has raised concerns about the relative safety and possible effects of such compounds, as well as the roles of industry and federal government in establishing guidelines and policies for the use of drugs – or any medical intervention. Pediatric pain can incur a host of lifelong neuro-biopsychosocial effects. Moreover, pediatric pain care is complicated by practical and legal issues of long-term and often escalated dosing of opioids, and there is a paucity of safety data and information about potential long-terms risks to the developing brain associated with commonly used analgesics in this fragile population.

Both the dictates of the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) initiative, and invocations of the Presidential Commission for the Study of Bioethical Issues speak to the imperative to translate brain research into viable clinical uses. In light of this, it becomes important to ask if and how novel neurotechnologies can meet the challenges and opportunities of assessing and treating pediatric pain. Research to date has shown promise: For example, neuroimaging studies have sought to identify and establish brain phenotypes for pain. As well, neurogenomics and proteomics may afford an understanding of pediatric pain syndromes and sensitivities to various pharmacotherapeutics. Such studies support the capability and potential clinical utility of neurotechnologically-based assessments. Interventional neuroscientific and neurotechnological techniques, including transcranial and in-dwelling approaches to neuromodulation (such as transcranial magnetic and electrical stimulation, (Moreno-Duarte, et al.; Moisset, et al.; Avery, et al.; Fagerlund, et al.) and forms of deep brain stimulation) (Russo, et al.; Gosset, et al.; Boccard, et al.), and highly specific analgesic ligands and novel pharmaceutical delivery preparations (Tseng, et al.; Healy, et al.; Molet, et al.), may each and all have value in augmenting – or in certain circumstances, perhaps replacing – other methods of pain control.

But any such view to improved approaches to pediatric pain care must also acknowledge a host of neuroethical issues. Thus, while the use of assessment neurotechnologies may be seen as relatively low risk, we must still consider potential burdens and harms of over- or mis-reliance upon perceived objectivity, misdiagnosis, and bias and stigma (of predisposition to pain, and in the subsequent provision of care and social regard). And while interventional neurotechnologies offer great potential to effectively mitigate certain types of pain, we must acknowledge the intersection of unknowns arising from a tentative understanding of the brain, nascent neurotechnology, and the possible longitudinal effects of altering brain structure and function during development.

On one hand the need to address pediatric pain prompts calls for rapid translation of pain research to clinical assessment and care to lessen the burden of the suffering child. On the other, consideration, if not caution must be taken to avoid burdens and harms that may occur as a result of heightened expediency from bench-to-bedside. Tension between these motives could impede the scope and progress of neurotechnologically-based approaches to assessment and treatment of pediatric pain. How then to proceed?

Working in collaboration with Dr. Stefan Friedrichsdorf and his team at the Children’s Hospital and Clinics of Minneapolis, our group has called for a balance, in which we advocate prudent evaluation and use of tools and techniques of brain science that are currently and soon to be available confronting the problem of pediatric pain. Building upon prior work of Liana Buniak, current research scholars Dr. Faisal Akram and Christelle Khadra are addressing the neuroethical issues generated by neurotechnological approaches to assessment and care of pediatric pain.

We posit that priority must be given to:

  • Funding the development and articulation of prospective, longitudinal research in pediatric pain management focusing on the benefits of various types of assessment and intervention, and long-term bio-psychosocial consequences incurred by implementing – or not implementing – particular approaches.
  • Sustained discourse and deliberation focusing on the neuroethical issues associated with pain care in children;
  • Ongoing examination – and possible revision – of guidelines, policies and laws to insure the probity of pediatric pain research and clinical care.

 

Our group is fond of the adage “measure twice and cut once”, and we unapologetically re-assert this summons here. But it’s important to note that we do not advocate this as an “either/or” proposition, but instead as a “both/and” obligation to meet the neuroethical opportunities and challenges afforded by advancing brain science in the clinical care of those most vulnerable, and to sustain the right and good use of neuroscience and its technologies in society across generations.

 

James Giordano PhD is Chief of the Neuroethics Studies Program at the Pellegrino Center for Clinical Bioethics, and is Professor in the Department of Neurology at Georgetown University Medical Center. Follow more of Professor Giordano’s work at explore.georgetown.edu, and http://www.neurobioethics.org.

 

Connect with PCCB for more updates on our research and events:

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