*4.2.2 Background beliefs and theories*

*Advances in Extracorporeal Membrane Oxygenation - Volume 3*

There may be some compromises (not necessarily consensus) among patients, family, and the healthcare team as we move back and forth among these elements of the WRE. For example, the healthcare team may be able to educate the family or surrogate about M.J.'s poor prognosis and the possible suffering she might endure if prolonged on ECMO as supported by their ethical obligation to do no harm. The family or surrogate, possibly feeling guilt, fear, or any number emotions in confronting the death of a loved one, might not want to sacrifice M.J.'s welfare for a previously declared request for continued treatment, and decide to withdraw. Then again, they may compromise and ask to have some more time with MJ, but with the acceptance of a DNR order. They may also be motivated to withdraw or accept a DNR order by recognizing that patients with quality lives can survive if they have access to the ECMO technology that is currently being utilized by M.J. The context of the decisions by which the healthcare will support or reject the family's decision just may depend on the level of harm, whether there is a patient in need of the ECMO unit, or if a transfer of care is possible. Regardless, the WRE should not simply be a tool for just healthcare professionals to come to terms with their initial moral judgments; the WRE should involve the perspectives, stories, and values of all persons who have stake in the decisions to be made. That is, the WRE can be a useful tool for shared decision-making,

where considerations are presented by multiple persons and parties.

asking "what other considerations might we have failed to consider?"

his estranged father is at his bedside and trying to make sense of the situation.

While there are several possible courses of actions, the healthcare team could take their initial moral judgment that is to avoid as much harm to the patient as

Moreover, in any of the possible outcomes, the WRE shows us that there does not have to be a single decision, recommendation, or outcome; some outcomes may be ethically preferable than others, however, the best outcome is one that has been carefully vetted through the WRE framework. With new information, the decisions may change, the patient, family and/or surrogates may be understood more fully as stakeholders in a shared decision-making process, and the healthcare team will have recognized that medical decisions, policies, and even laws may be subjected to revision and refinement. More importantly, once more permanent decisions are made such that ECMO is withdrawn, it is important for such decisions to be reflected on,

A 22-year-old, previously healthy, male patient presents with severe cardiac failure due to fulminant myocarditis associated with a viral infection. The patient, T.K. has been experiencing flu-like symptoms for over 3 weeks without seeking appropriate medical attention. After passing out at a fast food restaurant, paramedics arrived on the scene and suspected cardiogenic shock, which was confirmed by his healthcare team. Clinical tests further confirm tachycardia, hypotension, left ventricle dysfunction, severe respiratory failure, and rapidly evolving multi-organ failure. Furthermore, T.K. did not respond to mechanical ventilation. Currently, T.K. is on ECMO as a potential bridge to VAD, however, due to a significant embolic stroke sustained while on ECMO, it is unlikely that he will survive with meaningful quality of life. T.K. has already been resuscitated, and the healthcare team is questioning whether to continue ECMO treatment toward VAD, continue ECMO for a short time ("bridge to nowhere"), withdraw ECMO, or consider OP-ECMO. T.K. currently does not have decision-making capacity;

*4.1.4 Revision, refinement, and reflection*

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*4.2.1 Initial moral judgment*

**4.2 Case 2**

When considering the risks and benefits of the options presented by the healthcare team that are specific to T.K. and his current status, it is clear that without ECMO support, there is no hope of recovery. In regard to their "hope for recovery," the healthcare team reviews all of the clinical facts surrounding T.K.'s situation. For example, it is not uncommon for patients on ECMO to have neurological complications such as ischemic stroke, however, outcomes are limited to few reported cases [6]. The amount of neurological damage due to embolic stroke and quality of life is uncertain until the patient is able to move from critical care to a period of recovery, where further neurological assessment can be done along with rehabilitative interventions. Although, it is initially suspected that T.K. will have a poor quality of life if he survives, uncertainty gives the healthcare team pause. They have seen some patients recover, and others who had to be withdrawn from ECMO with no survivability. T.K.'s young age and prior health status contribute to the team's push to continue ECMO, while being mindful of the inherent and ongoing risks of continued treatment. The team can continue to try to manage the emerging multi-organ distress and provide medication therapy and other interventions to monitor and prevent further neurological damage, while also setting important limits to their efforts. As for using ECMO as a bridge to VAD, the uncertainty of the current health status of the patient prompts a more "wait and see" approach. With that, the team also should realistically consider the higher rates of long-term disability and morbidity and mortality rates with T.K.'s co-morbidities and the surmounting financial burdens to the patient, family, and/ or healthcare institution. However, the team's decision should not be isolated from a surrogate decision-maker. Thus, they need to first establish who is the surrogate decision-maker before moving forward in providing continued ECMO support in a "wait and see" approach.

T.K. is unmarried, does not have a significant other in his life, and his only family is a distant cousin who lives three states away and his estranged father. His father left T.K. and his mother, when he was 15 years old. Since the time, T.K.'s mother passed away from metastatic ovarian cancer, and he has been putting himself through college, while working a full-time job as an apprentice carpenter. T.K. talked to his father a few times on the phone over the past 2 years (his father calls every birthday); they met once for coffee about 2 months prior to T.K.'s hospitalization. T.K.'s father wanted to be back in his son's life and has been at his bedside nearly every day since his hospitalization. Given this information, and the legal requirements for next of kin (i.e., parent), the team is comfortable with providing ongoing communication with the father and involving him in shared decisionmaking regarding his son.

T.K.'s father does not insist that "everything be done" but approaches the situation based on what he feels his son would want. He describes his son as a "fighter," who is resilient, physically and emotionally strong, and would not want to be in a position, where he would have no quality of life or possibility to "fight" for his independence. The father is hopeful for his son's recovery, and willing to put in the work to secure him the resources he needs, however, he has also requested that if nothing more can be done, to simply "let him rest in peace" without "being a guinea pig" for scientific discovery. His reason for leaving his wife was due to her reliance on homeopathic medicine, and for never giving Western medicine a chance. T.K.

resented both of his parents for their actions but was willing to rekindle his relationship with his father, as reported by his father.

#### *4.2.3 Moral principles and theories*

In considering the clinical narrative of T.K., his father's narrative, and the healthcare team's initial moral judgment, it would seem as though the initial decisions to continue ECMO and treat the existing co-morbid issues, while engaging T.K.'s father in ongoing conversations about treatments and prognosis aligns with the principles of beneficence and nonmaleficence. T.K.'s father, in considering his son's needs and interests first, recognizes the importance of quality of life, end of life decision-making that is in the best interests of the patient, and the difficult nature of this clinical situation, which could change at any moment. Both the healthcare team and T.K.'s father mutually supports the decision to continue ECMO, treat any underlying problems, monitor the neurological effects from the stroke, and determine next steps. If and when T.K. should continue to decline, and ECMO is no longer beneficial, the team has discussed further options with his father including removal of ECMO. Advance care planning is guided by a care ethics approach, which involves caring for T.K. and his father (e.g., bereavement counseling), as well as the promotion of T.K.'s autonomy through surrogate decision-making, i.e., decisions based on what T.K. would have wanted if he were able to decide for himself.

#### *4.2.4 A need to refine the coherence framework with new information*

T.K. continues to decline, including an LV distention and subsequent pulmonary edema, and the neurological effects of the embolic stroke have proven to be severe. T.K.'s father, distraught with the new information, and knowing this is the end for his sons, asks the team to continue ECMO support for purposes of organ procurement, as "my son was a giving person, and I believe he would want to be able to help others." However, with multi-organ failure, a viral infection, prior ischemic stroke, and pulmonary edema, the team suspects there are no viable organs despite recent success cases [28], and thus, the best decision is to remove ECMO and allow T.K. to have dignity at the end of his life. The inconclusive nature of brain death determinations on ECMO, the high probability of non-viable organs that would be otherwise discarded rather than donated, the lack of robust case presentations and evidence-based medicine regarding ECMO patients as organ donors, and the rapid decline of T.K., all contributed to the background belief that ECMO should be withdrawn without pursuing organ procurement. This belief or rather the facts of the case, thus support the initial moral judgment to reduce or avoid unnecessary harm and keep T.K.'s father well-informed. However, the "wait and see" approach needs to be refined given the new clinical information (i.e., T.K.'s new prognosis), and the meaning of "harm" can be elucidated with a deeper examination of the ethical theories and principles as well as the status of the medical interventions (i.e., ECMO is no longer beneficial).

#### *4.2.5 Revision, refinement, and reflection*

In considering the new information, the healthcare team discusses removal of ECMO support and the inability to procure viable organs at this time, despite the honorable and altruistic recommendation by T.K.'s father. The team openly discusses the relatively new approaches to organ procurement from patients, who

**67**

family/surrogate).

go of a loved one.

judgments and actions.

*Finding a Bridge to Somewhere: An Ethical Framework for Veno-Arterial Extracorporeal…*

are on ECMO, and some of the ethical and pragmatic concerns with the father. T.K.'s father understands what the team is relaying and is in agreement that more harm than good can arise from organ procurement; however, he does question whether removal of ECMO is necessary, given that T.K. is rapidly declining and has no hope for survival anyways. The team then explains that because ECMO is no longer beneficial, if T.K. were to remain on this technology for any length of time, additional harms, i.e., damage to his body, are likely and the team does not want to contribute to those harms if they can prevent them. Of note, it is difficult for everyone who has cared about T.K. to see him continue without any benefit (moral distress). Even if a non-beneficial treatment policy were to be implemented by the healthcare team, which permits them to forgo treatment that is not a benefit to the patient when family or surrogates insist to continue treatment, having the honest and open conversation prior any discussion surrounding hospital policy is preferable. The team is able to share what they mean by "harm" and have an opportunity to understand the family or surrogate's point of view. Here, T.K.'s father understands that medicine cannot bring back his son, and collectively decides to withdraw ECMO support with the healthcare team. However, ethical considerations should not end simply with this decision; the healthcare team should reflect on the father's experiences: losing his wife who refused Western medicine and losing a son with the limitations of Western medicine. Further care such as grief counseling, support groups, or simply acknowledging this difficult time should be part of the WRE; all persons involved ought to be considered along with those decisions or recommendations that emerge from achieving coherence. That is, the WRE prompts us to see all issues or concerns of a case or situation that involve multiple persons (healthcare team, patients, and

Part of the ethical framework also prompts the healthcare team, institutions, and others to think critically about future patients, policies, and guidelines that could open up the organ donor pool significantly while giving family and surrogates the opportunity to make such decisions. In the end, while T.K.'s father agrees to the withdraw of ECMO treatment, there is also the possibility of future family members or surrogates who insist on continuing ECMO support in the effort to hold onto hope. In such cases, the WRE can help guide healthcare teams and families to understand the limits of medical technology, the importance of deciding what the patient would have wanted, the harms of continuing non-beneficial treatment, and the resources available for bereavement and support when letting

The case of T.K. could had a very different outcome; instead of a rapid decline and no benefit of ECMO, to improvement with continued ECMO support, but not without future extensive rehabilitation, and a loss of quality of life (i.e., T.K. no longer able to work, go to school, or have the same capabilities as he did prior to hospitalization). Such decisions, though, should ultimately be left up to the family or surrogate decision-maker as to whether to continue ECMO or to withdraw given the prognosis of a potentially poor quality of life and a lifetime of ongoing care. Advance care planning, then, is essential for patients and families confronted with these ECMO decisions, as is the understanding of "harms" and "quality of life" as every outcome does not lead to a complete recovery without complications. Each patient and family member or surrogate will have different values and interpretations that ultimately ought to be respected by the healthcare team following shared decision-making and a careful consideration of the elements of the WRE, especially as new information requires us to revise, refine, and reflect on previously held

*DOI: http://dx.doi.org/10.5772/intechopen.85702*

#### *Finding a Bridge to Somewhere: An Ethical Framework for Veno-Arterial Extracorporeal… DOI: http://dx.doi.org/10.5772/intechopen.85702*

are on ECMO, and some of the ethical and pragmatic concerns with the father. T.K.'s father understands what the team is relaying and is in agreement that more harm than good can arise from organ procurement; however, he does question whether removal of ECMO is necessary, given that T.K. is rapidly declining and has no hope for survival anyways. The team then explains that because ECMO is no longer beneficial, if T.K. were to remain on this technology for any length of time, additional harms, i.e., damage to his body, are likely and the team does not want to contribute to those harms if they can prevent them. Of note, it is difficult for everyone who has cared about T.K. to see him continue without any benefit (moral distress). Even if a non-beneficial treatment policy were to be implemented by the healthcare team, which permits them to forgo treatment that is not a benefit to the patient when family or surrogates insist to continue treatment, having the honest and open conversation prior any discussion surrounding hospital policy is preferable. The team is able to share what they mean by "harm" and have an opportunity to understand the family or surrogate's point of view. Here, T.K.'s father understands that medicine cannot bring back his son, and collectively decides to withdraw ECMO support with the healthcare team. However, ethical considerations should not end simply with this decision; the healthcare team should reflect on the father's experiences: losing his wife who refused Western medicine and losing a son with the limitations of Western medicine. Further care such as grief counseling, support groups, or simply acknowledging this difficult time should be part of the WRE; all persons involved ought to be considered along with those decisions or recommendations that emerge from achieving coherence. That is, the WRE prompts us to see all issues or concerns of a case or situation that involve multiple persons (healthcare team, patients, and family/surrogate).

Part of the ethical framework also prompts the healthcare team, institutions, and others to think critically about future patients, policies, and guidelines that could open up the organ donor pool significantly while giving family and surrogates the opportunity to make such decisions. In the end, while T.K.'s father agrees to the withdraw of ECMO treatment, there is also the possibility of future family members or surrogates who insist on continuing ECMO support in the effort to hold onto hope. In such cases, the WRE can help guide healthcare teams and families to understand the limits of medical technology, the importance of deciding what the patient would have wanted, the harms of continuing non-beneficial treatment, and the resources available for bereavement and support when letting go of a loved one.

The case of T.K. could had a very different outcome; instead of a rapid decline and no benefit of ECMO, to improvement with continued ECMO support, but not without future extensive rehabilitation, and a loss of quality of life (i.e., T.K. no longer able to work, go to school, or have the same capabilities as he did prior to hospitalization). Such decisions, though, should ultimately be left up to the family or surrogate decision-maker as to whether to continue ECMO or to withdraw given the prognosis of a potentially poor quality of life and a lifetime of ongoing care. Advance care planning, then, is essential for patients and families confronted with these ECMO decisions, as is the understanding of "harms" and "quality of life" as every outcome does not lead to a complete recovery without complications. Each patient and family member or surrogate will have different values and interpretations that ultimately ought to be respected by the healthcare team following shared decision-making and a careful consideration of the elements of the WRE, especially as new information requires us to revise, refine, and reflect on previously held judgments and actions.

*Advances in Extracorporeal Membrane Oxygenation - Volume 3*

ship with his father, as reported by his father.

*4.2.3 Moral principles and theories*

resented both of his parents for their actions but was willing to rekindle his relation-

In considering the clinical narrative of T.K., his father's narrative, and the healthcare team's initial moral judgment, it would seem as though the initial decisions to continue ECMO and treat the existing co-morbid issues, while engaging T.K.'s father in ongoing conversations about treatments and prognosis aligns with the principles of beneficence and nonmaleficence. T.K.'s father, in considering his son's needs and interests first, recognizes the importance of quality of life, end of life decision-making that is in the best interests of the patient, and the difficult nature of this clinical situation, which could change at any moment. Both the healthcare team and T.K.'s father mutually supports the decision to continue ECMO, treat any underlying problems, monitor the neurological effects from the stroke, and determine next steps. If and when T.K. should continue to decline, and ECMO is no longer beneficial, the team has discussed further options with his father including removal of ECMO. Advance care planning is guided by a care ethics approach, which involves caring for T.K. and his father (e.g., bereavement counseling), as well as the promotion of T.K.'s autonomy through surrogate decision-making, i.e., decisions based on

what T.K. would have wanted if he were able to decide for himself.

*4.2.4 A need to refine the coherence framework with new information*

T.K. continues to decline, including an LV distention and subsequent pulmonary edema, and the neurological effects of the embolic stroke have proven to be severe. T.K.'s father, distraught with the new information, and knowing this is the end for his sons, asks the team to continue ECMO support for purposes of organ procurement, as "my son was a giving person, and I believe he would want to be able to help others." However, with multi-organ failure, a viral infection, prior ischemic stroke, and pulmonary edema, the team suspects there are no viable organs despite recent success cases [28], and thus, the best decision is to remove ECMO and allow T.K. to have dignity at the end of his life. The inconclusive nature of brain death determinations on ECMO, the high probability of non-viable organs that would be otherwise discarded rather than donated, the lack of robust case presentations and evidence-based medicine regarding ECMO patients as organ donors, and the rapid decline of T.K., all contributed to the background belief that ECMO should be withdrawn without pursuing organ procurement. This belief or rather the facts of the case, thus support the initial moral judgment to reduce or avoid unnecessary harm and keep T.K.'s father well-informed. However, the "wait and see" approach needs to be refined given the new clinical information (i.e., T.K.'s new prognosis), and the meaning of "harm" can be elucidated with a deeper examination of the ethical theories and principles as well as the status of the medical interventions (i.e.,

In considering the new information, the healthcare team discusses removal of ECMO support and the inability to procure viable organs at this time, despite the honorable and altruistic recommendation by T.K.'s father. The team openly discusses the relatively new approaches to organ procurement from patients, who

**66**

ECMO is no longer beneficial).

*4.2.5 Revision, refinement, and reflection*
