The Littlest Voice

In pediatric clinical settings, patient information is funneled from care teams to parents than expectedly to their children, tasking the parents with providing surrogate consent. Despite this chain of communication, truth-telling between children and parents presents a unique dilemma for many parents prompting evasive maneuvers to avoid the difficult conversation with their children. Foregoing communication with parents ultimately interferes with a child’s autonomy in clinical settings. Despite its developmental-related imitations, pediatric autonomy in clinical settings can be understood as access to basic prognostic and diagnostic information that allows the opportunity to assent to procedures and care plans.

The decision for parents to withhold prognostic and diagnostic information from their children stems from a fear of further distressing the child amid serious or terminal illness. The element of terminality adds finite pressure to guardians facing the choice between transparency or deception in communications with their dependents. This disconnect between parent and child raises questions regarding pediatric autonomy and how much children should be entrusted with receiving information about their bodies or steering their care. Respecting child autonomy is integral to arguing that children have rights that develop in adulthood but can be violated in the present before they have the opportunity to use them (Hubbard 2019). The right to autonomy is a violative right; children do not have full autonomy, but their ability to inherit it in the future makes it wrong to disregard the limited but growing sense they presently possess. Despite the likelihood of patients diagnosed with a terminal illness reaching an age at which they have the opportunity to exercise full autonomy over their care, the neutrality and respect for future must be preserved as it would be for any child in clinical settings.

Children, fundamentally unable to exercise the full extent of their potential autonomy, depend on adults to act in accordance with the rights and needs they possess currently (Schapiro 2003). As such, parents are responsible for upholding their child's autonomy in a clinical setting. By leaving youth voices unattended to, physicians and parents disregard the child’s investment in their care and the budding autonomy they have. Obtaining assent from youth patients displays respect for their developing autonomy and addressing the fact that this child is the agent experiencing care (Unguru 2011). Respecting the pediatric patient as a person, with equal interest in their wellbeing and future, is integral to maintaining patient dignity.

During the pediatric end of life, with hospice and palliative care prioritizing patient comfort, psychological support throughout the dying process is integral to managing the child’s needs during end-of-life. If the child’s need for communication and support are neglected, the child will feel emotionally isolated, being left to cope with their death and other feelings alone. Complicated by their inability to comprehend the medical terms of their health and future, the process of coping with separation and death becomes overwhelming to children. These unaddressed concerns overshadow the child's quality of life throughout their final days (Muris et. al 1996), rendering their palliative care incomplete and ineffective in the absence of prognostic and diagnostic disclosure.

A qualitative study conducted retrospectively reflecting on their decision to communicate with their children uncovered that all parents that did discuss their child’s imminent death did not regret their choice. The interactions during a child’s final days remain indelible on parent’s perceptions of their relationship; engaging in these difficult conversations to facilitate a dialogue about their child’s death promotes healing after the loss of their child (Kreicbergs 2004). In order to enhance their child’s quality of life and reserve their rights, caretakers must be as honest and transparent as age-appropriate, letting the child guide this discovery. The term “appropriate” stems from ensuring that information is presented in a manageable and processable way for the child to open up a discourse about. This varies by age, of course, but the solution to the question of appropriateness is not resolved by neglecting the conversation in general. Parents must understand that though their child may seem immature, their young developmental age does not preclude them from experiencing fear and having a basic understanding of their future.

This article was written by Halle Paredes of Connecticut College. References and acknowledgements can be found in our journal, under "Current Issue"

The High Stakes of Philosophy

The four lofty pillars of beneficence, non-maleficence, justice, and autonomy are the main principles of medical ethics that govern how medical professionals provide care (Colwell 2013). These pillars dictate them to act in the patients’ best interests, do no harm, protect and advocate for patient choices, and champion equitable distribution of health care opportunities.

These four ideals seem to work together in perfect harmony to clarify uncertain moral implications and consequences to help the care provider make the correct decision. However, when examined under the lens of philosophy, the ethical framework crumbles and becomes a mess of intertwining and dilemma-inducing options that are at odds with each other. While each of the individual pillars are ethical in and of themselves, grouping them under a supposedly cohesive framework could be the reason for the inconsistency in trying to decide if one ideal overpowers another in a particular situation. This proposed idea can be investigated in the ethics of pain management, a field in which existing literature, accounts of health care providers (Colwell 2013) , and mission statements of professional medical societies ( Sulmasy and Bledsoe 2019) show that the four pillars are very relevant in the discussion of pain management delivery.

Pain is a universal yet personal indicative of an underlying distress, and contributes to the feeling of suffering (Fradelos et al 2014). Although pain cannot be truly measured, it can be rated on a qualitative scale of 1-10, with 10 being the most severe pain. However, since it is just a self-report that is only sometimes accompanied by known physiological manifestations (Colwell 2013), its credibility and value are lessened in providing a full picture of the illness narrative.

There is also a fascinating neurobiological side to this. On one hand, not giving pain attention could mean neglecting an underlying problem, while too much attention to pain makes it more of a focus and a problem than it really is (“The Fifth Vital Sign”). The amount of attention we give to pain needs to strike the right balance, a task that is not obvious or objective.

Keeping the theme of subjectivity versus objectivity in mind along with the various contradictions presented, pain management can reveal the complexity of ethically ranking the pillars. Current headlines relevant to this include the opioid epidemic, particularly the physician malpractice of opioid over-prescription, the $200 billion worth of annual chronic pain costs (Cohen et al. 2015), and alarming rates of untreated or wrongly treated pain (Carvalho et al. 2018). It is a mental tennis match of going back and forth between ideals that are all ethical and correct in their own sense, but somehow one could still be more correct than the other(s). The choice made plays a deciding role in the physician’s competence and accountability as well as patient’s outcomes and the quality of healthcare received.

Some examples: 1. Beneficence versus autonomy: a patient might express immense pain and a wish to have more opioids prescribed for pain control. Autonomy is important, since they are experiencing the pain and have a say over their choices. However, if the physician suspects drug seeking behavior, they might think that not giving the patient opioids is truly the best course of action. 2. Beneficence versus non-maleficence: a physician might recommend some intervention, say surgery of some sort, with the intention of helping with an illness or long-term harm but in the short term it might have harmful effects, whether it be psychological, spiritual or physical. 3. Justice versus non-maleficence: the justice ideal would say that a physician needs to treat all patients equally and give the same kind of treatment to a problem. But if one patient has a history of substance abuse while another does not, the physician might be hesitant to treat them the same and not give the same dosage to the former to prevent harm.

A pattern of easily getting into a bind with these arguably opposing ethical frameworks starts to emerge. There are no objectively correct choices. However, then the question becomes if it is even important to stay objective in medical ethics. Having explored how pain is subjective and each illness experience is defined by the person experiencing it, maybe it is so difficult to create an objective framework because it is impossible. Perhaps it is important to be less detached and have one’s own experiences, education, and opinions inform how pain management is handled. Again, the answer is unclear but the inconsistencies have intense consequences.

Given that a lot of medical decisions need to be made quickly and after consideration of a myriad of factors, it is an additional barrier for a provider to go through such a philosophical quandary in urgency. An ethical framework that is able to provide a well-defined foundation to productively make choices when there are opposing principles is key. A relatively more solid, clear-cut ethical foundation could make it easier for doctors who entered this profession in the first place with the desire to do good to be able to do so successfully.

This article was written by Priya Iyengar of Brandeis University. References and acknowledgements can be found in our journal, under "Current Issue"

Life Saving Choice: Organ Donation Systems

As life expectancy has increased worldwide, the number of individuals who suffer from chronic conditions in old age has drastically increased. One common chronic condition is organ failure—more individuals are living longer and eventually need a new organ to maintain healthy function. The biggest issue facing this area of medical treatment is a lack of viable organs. Countries around the world have created systems to address this disparity in available organs, largely separated into systems that assume everyone is a donor or that assume one must explicitly authorize donation. In this paper, the organ donation systems of two countries—the U.S. and Spain—are compared with respect to in respect to their successes, challenges, and failures in closing the gap.

The two major categories for organ donation are “opt-in” systems and “opt-out” systems. In an opt-in system, individuals register themselves as organ donors if they desire to donate organs after death (Kazemayni, 2004). In an opt-out, or “presumed consent,” system, individuals must register to be removed from the donor list (Kazemayni, 2004). When controlling for other determinants, presumed consent does show a sizeable positive affect overall on donation rates (Abadie & Gay, 2004). Mandated choice, or systems in which every individual is required to indicate their desire or refusal to serve as a donor in the instance of their death, has also been shown to increase donation rates (van Dalen & Henkens, 2014). Additionally, in countries that switched from opt out to presumed consent or mandated choice, the rate of agreement to donate remained constant among already registered donors but increased among non-donors (van Dalen & Henkens, 2014).

United States

The United States operates under a system of explicit consent. Individuals can register as organ donors when obtaining a driver’s license, via an online national registry, or by joining their state registry of organ donors (UNOS, 2018). Outside of some cases in which families express strong objections, the deceased’s wishes are followed when the deceased is eligible to donate. (UNOS, 2018). In cases in which the individual had not “opted in” to be an organ donor prior to their death, families are asked for authorization for organ procurement (UNOS, 2018). In 1984, Congress passed the National Organ Transplant Act to establish the Organ Procurement and Transplantation Network (OPTN), a private, non-profit entity that retains experts on organ donation and maintain the list of individuals in need of organs (US Dept. of Health and Human Services, 2018). The OPTN is contracted by the federal government and overseen by the Public Health Service and a national policy board which establishes membership criteria and medical criteria for organ allocation. This contract is and always has been held by the United Network for Organ Sharing, or UNOS (USDHHS, 2018). Under UNOS, 57 organ procurement organizations (OPOs) are overseen by multiple government agencies and health care associations and are the only organizations recognized to legally recover organs from a donor in the United States (AOPO, 2018). If two physicians determine a patient meets the criteria for brain death or circulatory death, and a trained organ requestor obtains authorization from the patient’s previously stated wishes or from the family, the primary physician contacts UNOS (UNOS, 2018). A computer algorithm based on UNOS policy determines to whom each organ donated will be offered (UNOS, 2018). Due to the careful system in place to maintain a potential donor’s individual rights, lack of trust of the U.S. healthcare system, and an opt in system, the U.S. lacks the number of donors it needs—currently approximately 100,000 individuals are waiting on an organ transplant (Steinbrook, 2007).

Spain

In contrast, Spain utilizes an “opt-out,” or presumed consent system (Miranda et al., 1999). Like in the United States, Spain defines brain death as the total loss of all brain functions, though in Spain it must be declared by three physicians uninvolved with the procuring or transplant of the organs (Miranda et al., 1999). Individuals in Spain must ask to be removed from the donor list, or they are presumed to have authorized donation. Nevertheless, families are asked for authorization to donate anyway; thus, despite an official presumed consent system, Spain in practice requires familial authorization (Matesanz, R., 2003). Much of the success of the Spanish system—noted for having the highest donation rate of any country and for having an continuous increase in donors over a ten year period—is attributed to the three-level system of organ donation (Matesanz, 2003). The Spanish National Transplant Organization (ONT) is coordinated at three levels: national, regional, and in the hospital (Matesanz, 2003). The national and regional levels are nominated and paid for by Spanish government officials and are responsible for all policy decisions (Matesanz, 2003). The third level, in the hospital, requires a hospital transplant coordinator in every hospital approved to do transplants; this role is filled by a physician who works with a team of nurses and reports to the hospital director (Matesanz, 2003). Many of the coordinators also work as anesthesiologists or other positions directly involved in donation and transplants (Matesanz, 2003). In addition to conducting ongoing brain death audits, coordinators and related personnel receive continued medical training.(Matesanz, 2003). Perhaps most significantly, Spain launched sustained efforts to improve education about organ donation to the general public, including a twenty-four hour hotline, periodic meetings of journalists, hospital trainings on effective communication, and management plans for negative publicity (Matesanz, 2003). Spain’s system to increase organ donation is made successful not only by its presumed consent model, but also by the implementation of extensive educational campaigns as well as double-duty physicians acting as transplant coordinators.

Closing the Gap

The U.S. currently fares better in donation rates than some nations worldwide, but it still falls behind nations like Spain where an opt-out system in combination with training and public awareness campaigns have raised donor rates. If the U.S. were to adopt such a system, questions such as the necessity of familial consent and the logistics of opting out would arise. Kennedy et al. raises the question of the moral justifiability of blocking a policy that could narrow the gap between needed life-saving organs and availability of those organs (1998). In the U.S. alone, 100,000 individuals are waiting on an organ transplant (Steinbrook, 2007). However, the innate American culture of individualism stands out as a blockade to any such legislation. Langone and Helderman point out that “selling” an opt-out policy regarding donating something as individualistic as one’s own organs, even post-mortem, would face fierce opposition in US society (2003). Additionally, if it was not legally required to consult families of individuals who did not opt-out, there may be legal conflicts if a family decides they do not want the deceased individual’s organs donated. Instead, it may be best to implement a mandated choice policy. While it does require individuals to make a choice regarding their donor status, it is more difficult to argue that it violates individualistic rights. Mandated choice is designed to honor, as wells as necessitate, individual choice, potentially satisfying the competing moral dichotomy of individual freedom versus beneficence toward others. Despite the downside that mandated choice precludes the possibility of familial authorization post-mortem, the option appears to be the lesser of two evils.

Both countries discussed, and every country worldwide, face disparities between available and needed organs. As life expectancy, and thus the population of individuals who may suffer from organ malfunction and failure, continue to increase, the gap will continue to widen. This gap is hard to close because of the limited donor pool and short “shelf life” of donated organs. However, if efforts are made to maximize the turnover from potential donor to donor, countries can begin to narrow this gap. To do so, each country must match their organ donation system with cultural and religious considerations. Perhaps more importantly, the benefits of organ donation must become common knowledge.

This article was written by Heather Cozzie of Wake Forest University. References and Acknowledgements can be found in the first issue of our journal under "Current Issue"