Futile or Fruitful: Medical Interventions and the Respiratory Therapist

Editor’s note: This text-based course is an edited transcript of the webinar, Futile or Fruitful: Medical Interventions and the Respiratory Therapist, presented by Shawna Strickland, Ph.D., CAE, RRT, RRT-NPS, RRT-ACCS, AE-C, FAARC.

It is recommended that you download the course handout to supplement this text format.

Learning outcomes after this course:

• Define futility
• Identify limitations of using futility in medical interventions
• Discuss futility in recent medical cases

Futility

• To a reasonable degree of medical certainty, it is not possible for the intervention to act as a bridge to:
• Prevent/reduce the deterioration of the health of an individual
• Prevent the impending death
• Effectively or appreciably alter the course of the disease
• Futile treatment is identified as treatment that is burdensome harmful to the patient

Let's start with defining futility. This is difficult for many reasons. There has been a lot of conversation about whether or not we even need to use the word futility or futile. It is a confusing concept, especially for those of us who may not engage in these types of conversations on a regular basis. Medically futile treatment means that to a reasonable degree of medical certainty, it is not possible for the intervention to act as a bridge to prevent or reduce the deterioration of an individual's health, prevent the impending death, or effectively or appreciably alter the course of the disease. Futile treatment is identified as a treatment that is burdensome and harmful to the patient. We can accept that chemotherapy is a beneficial treatment for cancer. Can we also accept that it can be a futile, burdensome medical procedure? Defining futility is different and difficult.

This particular group of researchers, Jox et al., about 10 years ago, evaluated ethics consultations in Germany and interviewed 18 physicians and 11 nurses engaged in those procedures. This was both in the critical care environment and in palliative care. Their point was that they wanted to understand the perceptions of futility. They found four main categories through their interviews regarding the definition of medical futility, 

• Pointless, not reasonable (8)
• No goal of care attainable (29)
• Burden benefit (20)
• Has to be defined with regard to the individual patient, holistically (3) (Jox et al, 2012)

We see that the main themes include pointless or not reasonable interventions and no attainable goal of care. The burdens were greater than the benefits for each of the interventions that were proposed, so the necessity of individualizing the definition. If we have difficulties defining futile interventions, then it makes sense that we will have difficulties applying them.

Applying Futility

As we do not have that widely accepted definition, we also do not have guidelines for staff to follow. When presented with these situations, it feels like futility. There are also a lot of conflicts within this realm. It feels like this is more of a subjective decision versus an objective one. Therefore, the staff involved in that patient care may have different perceptions of futile interventions. In addition, there may be some conflict between the patient's family and the staff about the perceptions of futility. It does not help that the media, both news media and entertainment media, tend to showcase extreme cases of patients who recover against the odds or what may be termed a miracle, which will then affect the way our patient and their family who does not have a medical background and may approach the situation.

One of the statistics that comes to mind is that a set of researchers several years ago, with the wave of medical television in the late 90s and early 2000s, looked at the success rate of cardiopulmonary resuscitation on medical television shows versus the in-house witnessed CPR success rate, success meaning discharged to home after a CPR event. In medical television, it was like an 87-88% success rate that if that person received CPR, they would get up, walk out, go to have this wonderful full life. In reality, the success rate of in-house witness CPR, cardiac arrests, followed by CPR, discharge to home,  and relatively prior quality of life were closer to 17%. It impacts how our patients and their families view the interventions we propose or ask about. We tell them it does not have much of a success rate.

Sources of Conflict

• Conflict within the team
  • Difference in opinion/ responsibilities
  • Lack of consensus among team
  • Poor advance planning
  • Lack of training in conflict resolution
  • Lack of awareness of available resources (i.e., palliative care)
• Conflict with patients/surrogates
  • Poor communication between team and family unit
  • Religious and cultural beliefs
  • Lack of advance directive or living will
  • Public perception of physician capabilities

Sources of conflict are organized by conflict within the team, conflict with patients, and surrogates. When discussing conflict within the team, we discuss healthcare providers not agreeing with each other. The physician may propose an intervention. The nurses and respiratory therapists may say, "This is crazy. I do not know why we are doing it." The sources of conflict within the team include differences in opinions and responsibilities. I am a respiratory therapist, but this is my realm, and I have a specific view. Someone who is not as immersed in the respiratory therapy aspect of the care might have a different perception because they do not understand the intricacies of that intervention—a lack of consensus among the team. Half of the team feels strongly that this is a futile intervention. The other half of the team does not. Those are some issues—lack of awareness of available resources like palliative care and things we can do to bring others together. For example, a nurse may complain that the physician did not see the whole picture, or the physician may not feel supported in that difficult decision by the rest of the care team. The result is that the patient's family does not see a unified front,  which is hard. Even when we do not agree with each other, once a decision has been reached, we must present that unified front so that the patient's family does not lose even further trust in what the healthcare team can do. Now, on the flip side, we are also talking about conflict with patients or surrogates of the healthcare team. Poor communication is always going to be a major issue. We use a lot of medical jargon. We talk about things in specific ways that our families may or may not understand. I am getting ahead of myself a little bit, but also religious and cultural beliefs and understanding the differences that may make a person consider a situation differently. Or, again, public perception of capabilities, what we can and cannot do, and what is achievable.

• Patient treatment
  • Subcategory: Therapy goal, Overall outcome, Benefits/burden, Patient preferences
    • Example: Aimless, useless, pointless, Poor outcome, survival unlikely, Benefit/burden for patient/other, Patient wishes
• Quantitative aspects
  • Subcategory: Probability of success, Quality of life, Length of stay, Physical aspects
    • Example: Chance, Prolonging life, Extended ICU stay
• Resources
  • Subcategory: Resources in general, Type of resources
    • Example: Time, money, physical resources
• Professional aspects
  • Subcategory: Professional duties, Societal norms
    • Example: Professional expectations, Societal expectations
• Reference to balance
  • Subcategory: N/A
    • Exampel: Balance
• Definition challenges
  • Subcategory: Medical aspects, Difficult to define
    • Example: Objective medical information, Terminal conditions, Unable to define (Müller, Kaiser 2018)

Müller Kaiser, another set of researchers, developed a systematic review of qualitative studies. These studies looked at the lived experience of a phenomenon. These qualitative studies focused on the attitudes of various stakeholders. This included patients, families, and healthcare providers, looking at those attitudes toward medical futility. The review focused on two aspects, the healthcare, who was interviewed what definition was given. We see six categories and sixteen subcategories. These were used to define medical futility by the people studied in these qualitative studies. They were predominantly physicians and nurses, and some respiratory therapists were included in some studies. We see the six main categories: patient treatment, quantitative aspects, resources, professional aspects, and reference to balance definition challenges. We also see the subcategories and some examples of each category. For example, under the patient treatment category, we have the overall outcome, the benefits burden ratio, or patient preferences with regard to that patient's treatment. What is the benefit versus the burden for the patient? Later, we will talk about who gets to make that determination.

Problems with Futility

Quantitative aspects are objective things that we wish we could do. Like, what is the probability of success? If we institute mechanical ventilation for this patient, what is the likelihood that that patient will return or bridge the patient to a prior quality of life? We typically do not have an overly accurate magic eight-ball with that particular content. If my patient is admitted to the hospital with an exacerbation of this sonic disease process, what is the predicted length of stay? Again, many factors are going to impact that. It is very difficult to come to an objective analysis. Beyond the definition, there are other issues with identifying futility. The first is the Hippocratic Oath. Now we, as respiratory therapists, do not necessarily take the Hippocratic Oath, but we do subscribe to that do-no-harm philosophy. That is typically where we start to look at how we impact the trajectory of our patients. None of us got into respiratory therapy because we wanted to see people pass away. We did not want to see those negative outcomes. If asked, many respiratory therapists would say, I got into this job to save lives. I got into this job to make a difference and a positive difference. That does not harm, or the nonmaleficence aspect of the ethical analysis is difficult to come to terms with if we define harm as death. That is a whole other discussion about whether harm is equal to death or whether there is such a thing as a good death.

We will touch on that later, but because we are more aligned with that do-no-harm philosophy, the resultant guilt accompanies our patients passing away. I recall the first time I had to remove a child from a mechanical ventilator. It was an extraordinarily difficult situation. I needed a moment to compose myself. After the event was completed, I went into the locker room, and a senior respiratory therapist came to check on me and asked how I was doing. A nurse came in at the same time. The nurse said, "Oh, you will get used to it. It is no big deal," and walked out of the room. The respiratory therapist talking with me said that the nurse was wrong. It never gets easier, it never gets better; if it does, you should probably get out of this profession. Just a little compassion lesson for me at the time. It also gave me validation that it was okay to feel that guilt, to feel that sadness when the patient passed away. The issue with patient autonomy is interesting.

In the mid-20th century, we still had a very paternalistic relationship with the physician. The physician says to do the thing. Everybody does the thing. The physician says this is best everybody goes along with that. Over the years, that paternalistic relationship has changed to more of a patient-centered model where we have this co-development of treatment goals and outcomes. This concept of patient autonomy is that we want to adhere as much as possible to the patient's wishes and follow the patient's values. There is a point when healthcare providers have that advanced knowledge of indications, contraindications, hazards, benefits, burdens, and consequences of all medical interventions. The patient needs our expertise to arrive at an ethically supported solution. The problem here, though, is when we have these conflicts, the patient wishes to have an intervention, let's say mechanical ventilation that the patient wishes to have, or the family wishes to have the patient receive intubation and mechanical ventilation to bridge to recovery. We know that the harm caused by that intervention would be far greater than any benefit the patient could receive. Then we have a conflict with the different outcomes. We will talk more about that balance as we move along. We also have to worry about litigation. We are in a society that uses the courts to settle many medical-legal issues. This may impact how the team approaches providing what we could call medically futile intervention.

People might be hesitant. Physicians or respiratory therapists might hesitate to push back too hard for fear of legal retaliation. I also want to take a second to comment on how we expect our patients and their families to make decisions about futile end-of-life interventions. We are asking these people on what may be the worst day of their life, or we are asking these people with very limited medical knowledge, if any, to make a rational, objective decision about the life-sustaining treatment their patients receive and their family is receiving. It is a terrible situation. None of us want to be in it. I will just put a plug in for a little compassion with our families and the little patience they are trying to struggle with the impending death of their loved ones. Even though we know that the intervention may be futile, it may take them a little time to get to that point. I recall, as an ethics consult, seeing a patient who had been diagnosed with ALS, very rapidly progressing ALS. She was on noninvasive ventilation. When I went to consult with the patient and the family, the report I got was that the family was difficult. They were demanding. They were illogical in their insistence that this ALS patient receives non-invasive ventilation. The poor patient was at the end of her life in this particular disease journey. Unfortunately, or fortunately, depending on how you look at things, she was very mentally aware of her condition, but she had very little control over her physical form. When I entered the room, I saw the exhausted, grieving husband of this 30-year-old woman trying to hold it together for her, trying to do whatever she needed to feel comfortable in this extraordinarily horrifying situation.

The respiratory therapist I talked to said, "Oh, this is not doing any good. She is never going to get better. I do not know why we are doing this. This is just a waste of my time." I reflect on that quite a bit. That patient did pass away within a couple of weeks of my seeing her. The ethically supported action at that time was to provide this woman with as much relief as possible so that she could go home and pass away with her loved ones. Continuing the noninvasive ventilation would not change her course of action, her course of the disease trajectory, but it provided her with temporary relief, helping her have that death that she could control. Back to the lectures, a good situation to think about as we think about how why we provide these interventions that could be futile.

Why Provide Interventions Deemed Futile?

The thought of taking away something that could help a family member live is extraordinarily challenging. The study that Jox et al. (2012) completed asked those folks why we would provide these interventions. The reasons that we do such things are primarily emotional. Guilt, grief, fear of the legal system, and concerns about the family's reactions. They are providing an opportunity for the family to come to terms with the end of life. It may take a few days or a week for those folks to come to terms and understand that this might be the best thing to do—also some institutional barriers. There could be a delay for several reasons, establishing a serious prognosis. In some states, the courts allow the hospital to discontinue futile medical intervention after a specific time. They wait for that time to expire, go through the court system, and have families visit the patient before the patient passes away. In this study by Cifrese et al., 2018, the authors conclude that managing futility could be improved through communication training, knowledge transfer, organizational improvements, and emotional and ethical support systems. We will talk a little bit about those support systems as we go along. We will talk a little bit about those support systems as we go along.

Jox et al. (2012) study provided a treatment algorithm based on the results of their study. Number one, asking about the patient's preferred goal of treatment. In some situations, this might be a challenging conversation because perhaps this was an unexpected event. There was no time to talk with the patient about this. In that case, you must rely on the patient's family or surrogate decision-makers. Perhaps this is a stage four COPD patient who has been in the hospital many times. This happens to be the last of those admissions—but understanding the patient's preferred goal of treatment is important. Patient preferred goal, what would you like to receive? What is your goal from this admission? Are you trying to get back to a higher quality of life? Are you trying to get home so you can pass away at home? What is your goal here?

Then we must identify whether we can realistically achieve these goals. If they cannot, if this patient is on a mechanical ventilator, their pupils are dilated and non-reactive, the patient's family says, "I want my patient to get up, walk out the door, go home, have a steak dinner," there is a strong likelihood that that is not going to happen. As factual judgment, now we have to say, "Okay, this is not a reasonable expectation of the outcome of this patient's disease process." If it is realistic, does the benefit of that goal outweigh the risks and burdens? Yes, we can institute mechanical ventilation, but we all have to remember that mechanical ventilation is not a benign intervention. If it is, if the mechanical ventilator is mismanaged, then we can cause structural damage. We can cause barotrauma and volutrauma. We can cause all kinds of fun issues that we would prefer our patients not to experience. It is not a foregone conclusion that the patient will rest on mechanical ventilation to become extubated. There will be no consequences. Again, can the benefits outweigh the risks and burdens? If not, we are back to that pathway of identifying an alternative goal of treatment. We have discussed futility as a definition, its application, and a little about what some studies have discussed.

Futility in the Neonatal Intensive Care Unity (NICU)

• Quantify cost & prediction of futile interventions in NICU
• 1813 infants on 100,000 NICU days between 1999 - 2008
• 14% of patients died
  • Nonsurvivors smaller, younger, and had shorter LOS
  • 4.5% of NICU expenses spend on nonsurvivors after predictions of death
• “Predictions of ‘die before discharge’ were wrong more than one time in three. Attendings and neonatology fellows tended to be optimistic, while nurses and neonatal nurse practitioners tended to be pessimistic” (Meadow et al. 2011)

Let's talk about it in some specific situations. Those who have worked in the neonatal ICU know that our tiniest, most fragile patients are no strangers to the concepts of futility. It is difficult to predict the path of our little ones, but many factors impact NICU survival. Our babies who are younger, younger gestational age, and lower weight tend to have a bit of a rocky path. I am sure that if you have worked in the neonatal ICU, you have seen some babies who have made it against all the odds. Some babies you thought were going to do great did not. Attributing cost to futile interventions is hard. It is a very challenging conversation because we do not want to monetize the patient's life. At the same time, we also have to recognize that there is a fiscal cost to these futile interventions.

In this research study, Meadow et al. (2011) looked at the cost of predicting futile interventions in the nursery. They studied over 1800 infants between 1999 to 2008. Of this population, 14% of the patients passed away. Unsurprisingly, those who did not survive were the very young, those with the lower body weight—those babies with shorter lengths of stay. About 4.5% of expenses were spent on the nonsurvivors after the prediction of death. Of those expenses, 4.5% occurred after the team communicated that this particular infant would probably not survive the ICU. This team learned that the prediction of dying before discharge was wrong more than one time in three. That is challenging. Attendings neonatology fellows tended to be more optimistic, whereas nurses neonatal nurse practitioners tended to be more pessimistic. My interpretation of that statement is that the nurses spent more time at the bedside. They have a different perspective than the physicians who maybe only see the children once or twice a day.

Futility and Resources

In addition to cost, we also have to consider how medical resources impact our intervention and allocation of those scarce resources in the face of futility. This particular study by Close et al. (2019) interviewed 96 physicians about a time when they provided care to a person when they thought they should not have. In this interview, they asked if resources were a factor in deciding whether or not to offer treatment that may be futile. Of those 96 physicians interviewed, 56% said they take into account the necessary resources and felt like they are not only patient advocates but also a steward of those health resources.

Those interviews also discuss the relationship between resources and futility, specifically the degree of the potential benefit that would warrant using the resources. The physicians interviewed also discussed resource-related distress, specifically distress related to avoidable waste, how to prioritize resources fairly, frustration with their role as the rationer of that medical treatment the pressures that accompany that role. Now note that this study was published by Close et al. (2019). That was before COVID. If you will recall, in the beginning days of COVID, when we had those massive surges in Seattle, New York, Detroit, Georgia, and elsewhere, there was a huge concern about whether or not we had enough medical resources. At a time when we had very little knowledge of the virus and little knowledge of how this would progress with fewer machines, I am certain that should those 12 physicians be interviewed again, there would be other aspects of the COVID pandemic that would compound these results. We also have to consider health disparities' futility. When we talk about futile intervention, we are talking about declining to provide a patient with a medical resource. Mechanical ventilation, dialysis, medication, whatever that intervention might be.

Futility and Health Disparities

In populations routinely discriminated against, stating that medical intervention would be futile may be perceived as the healthcare team not wanting to treat that patient based on racial, socioeconomic, or health insurance status difference. Though the healthcare team may truly feel that this is a medically futile intervention, the lack of trust in a healthcare system that has routinely discriminated against these groups of various populations can lead to questioning fairness again, furthering that trust gap.

Moral Distress and Burnout

I want to talk about moral distress burnout in the context of providing futile interventions. Before we do that, I think we need to define these constructs so that we are all on the same page. Moral distress is the inability of a moral agent, that is, us, the healthcare provider, to act according to their core values and perceived obligations due to internal and external constraints. At the same time, burnout is a psychological syndrome emerging as a prolonged response to chronic interpersonal stressors on the job. Burnout has three key dimensions.

Overwhelming exhaustion, depersonalization, and low personal accomplishment. The survey tools used to measure these particular things are the Moral Distress Scale-Revised, the MDS-R, the Maslach Burnout Inventory, or the MBI. Let's talk about futility and moral distress. Continually providing interventions that have no appreciable difference in the patient's recovery or changing the direction of the patient's disease can take a toll on healthcare providers. At a time when burnout among healthcare providers is high anyway, the additional burden of providing a futile intervention compounds the feeling of moral distress.

Futility and Moral Distress

A group of researchers, Fumis et al. (2017), from Brazil, surveyed respiratory therapists, nurses, nurse technicians, and physicians regarding moral distress frequency intensity. They did not find a significant difference in moral distress between the healthcare providers, but they did find a difference in moral distress experienced in the ICU versus step-down. The important part of the study is that they looked for a correlation between burnout domains and moral distress survey items. They found that moral distress resulting from the provision of futile intervention was significantly associated with severe burnout. There was a statistically significant difference between the no burnout group and the group identified with severe burnout regarding providing life-saving actions that are perceived as only prolonging death when following the family's wishes for patient care when the healthcare provider disagrees but is fearful of a lawsuit. Their conclusion, moral distress resulting from the provision of futile care is significantly associated with severe burnout. There are many reasons to address futility, both from the healthcare provider's perspective, the family, and the patient's.

Futility and Impact on Burnout

• Lambden et al (2019) surveyed HCP in 2 NYC hospitals
• 349 physicians, nurses, NPs/PAs, and interns/residents/fellows
  • 91.4% reported they had provided futile or potentially inappropriate care (PIC)
  • 43.4% screened positive for burnout • 35.5% reported thoughts of leaving job as a result of futile/PIC
  • 7.8% screened positive for depression
• Major findings
  • Positive burnout screen likelihood increases with reported number of futile/PIC cases reported
• Conclusion: futile and PIC is associated with burnout and intention to quit

Lambden et al. (2019), this pre-pandemic, surveyed healthcare providers in two New York City hospitals. Their focus was on futile intervention measures of clinician wellbeing. They surveyed physicians, residents, nurses, nurse practitioners, and physician assistants. They found that a large percentage of providers had provided futile or potentially inappropriate care (PIC). They found that many providers surveyed had thoughts of leaving their job due to providing this futile care. This was the highest among the registered nurses in this group of almost 350 people. The researchers also found that the providers who provided futile interventions for three to five patients were 3.5 times more likely to have thoughts of quitting than those who provided this type of futile intervention for one or two patients. Across all clinicians, the proportion who screened positive for burnout increased with the number of provided futile interventions. The researchers concluded that providing futile interventions is associated with clinician well-being, including burnout and intention to quit. If you are a manager, you are worried about your team and burnout.

You may also want to peek at how often your team is being asked to provide futile interventions and how the healthcare team responds to that particular phenomenon in your facility. Okay. Excuse me. I want to shift gears a little bit. We are a little over halfway through. As a bedside clinician, I want to shift gears and talk about actual cases of futility from a few different perspectives over the years. as a bedside clinician. You have likely experienced perceptions of providing futile interventions. But our experience may skew to the perception that the family is always pushing for futile interventions. Healthcare providers are always pushing to halt or withdraw or withhold these interventions. Let's explore a few well-known cases foundational for our American legal system and how the legal system views our medical futility issues.

Futility in Practice

Key Futility Cases in the US

Let's start with the issue of Karen Anne Quinlan. Ms. Quinlan was 21 years old and lapsed into a coma after an anoxic brain injury. She was ventilator dependent. Her father requested that she be removed from the ventilator as this was not the life she wanted to lead. The physicians refused. A court battle ensued. It took quite some time, but the New Jersey Supreme Court eventually sided with the family, and the ventilator was removed in 1976. Now, the family was not looking to hasten her death. She did remain in a care facility with a feeding tube. She did not pass until 1985 from respiratory failure. It was a surprise, I think, to the family that she did not cease breathing when the ventilator was removed, but she was provided that care until her passing.

Nancy Cruzan's story was similar, also in a persistent vegetative state at 25 years of age after a motor vehicle accident. She was dependent on a feeding tube, not mechanical ventilation. The parents petitioned to have the tube removed after her prognosis was expected to be extraordinarily grim. The physicians refused. This particular court battle lasted about eight years. Initially, the trial judge ruled in favor, but then the Missouri Supreme Court overturned that decision. This was the first right-to-die case that the US Supreme Court reviewed. Her feeding tube was removed after the court's decision. She died 12 days later, in December 1990.

Christine Busalacchi was also in Missouri. Christine was a senior in high school when she was left in a persistent vegetative state after a motor vehicle accident. After seeing the success of the Cruzans, her father also petitioned to remove her feeding tube. The physicians objected. He petitioned to get her removed from that facility to a facility in Minnesota where the state law does allow the removal of the feeding tube. After a five-year court battle, a newly elected Missouri Attorney General decided not to pursue the state's effort and withdrew the motion to deny this request. The Missouri Supreme Court granted the father's motion, and she passed after the removal of the feeding tube in 1993. 

Terri Schiavo was one of our more recent cases. You may remember this case depending on your age and how long you have been in healthcare. Terri was left in a persistent vegetated state after a cardiac event. She was 26. After the initial insult of her vegetative state, they tried rehab for the first couple of years. Very intense rehab to try to reverse the effects of that anoxic brain injury, which was unsuccessful. At this time, she was receiving nutrition through a feeding tube. After eight years of existing in this state, her husband petitioned to have the feeding tube removed. An arduous court battle ensued. It was very big in the media, including Terri's parents, who opposed removing the feeding tube. Eventually, after an extraordinary, very public court case, the feeding tube was removed, and she died 13 days later in 2005. This particular case has had a lasting impact. There is a law in Florida called Terri's Law about the right to die.

All of these cases, individually and collectively, have significantly impacted how medical futility and the right to die have been addressed in the US courts. Let's take a little bit of a different tact. Many of our experiences lend us to the perception of medical futility battles in that physicians think one thing. The healthcare team provides specific recommendations, but the family is against those recommendations and wishes to have all medical interventions. We will take a couple of more recent cases in this situation.

Modern Medical Futility

The first one I want to discuss is an international case from the United Kingdom. This received much media attention, I will not use the child's name, but you may find that this sounds familiar. In 2017, an infant with an extraordinarily rare disease process was presented for treatment. His disease process was a genetic disease characterized by a reduction in the mitochondrial DNA leading to impaired energy production, which then affected tissues and organs. The only available treatment was extraordinarily experimental and very expensive. The family raised funds the hospital tried to receive approval to give the child treatment, but by the time they received this approval, the child's condition had worsened to an extraordinary level, and it was deemed that the intervention would be futile at that time. At that time, the child was intubated and was receiving mechanical ventilation. The team recommended removal from that mechanical ventilation so that the child could pass. They wanted to offer hospice.

The family sought a second opinion from physicians in the United States. At the time of that evaluation, the physicians in the US did say that they could give the child experimental therapy. By the time they reached the point where the physicians in the US agreed to that level of intervention, the child's condition had deteriorated further again, and intervention was deemed futile. The parents engaged in a long battle with the British courts, arguing that even though the child's condition had worsened, there was nothing to be lost by trying the experimental treatment. The parents wanted to remove the child from the hospital in the UK and move him to a hospital in New York. The hospital in the UK did petition to override the parent's decision, and the British courts did support the hospital.

Over those 10 months, it took the courts to get to that point. The child's condition just continued to deteriorate. Just before his first birthday, he was transferred to a hospice, where mechanical ventilation was withdrawn, and he passed away almost immediately. What are the ethical issues within this extraordinarily sad case? Unfortunately, the child's prognosis for survival was extraordinarily small, with minimal treatment options available at the time. It is easy to understand why the parents would want to do everything for their child and give him every chance possible for survival. Another confounding factor is that this was very time sensitive. His condition was deteriorating quickly. They did not have the time to go back and forth with the courts and wait for people to find a new avenue or look at different factors. Several medical ethicists have lamented that this went to the courts when perhaps it could have been mediated at an ethics committee level instead of the circus that this turned into with the courts. As the parents had advocated for their child, they took to social media, influencing public decisions about the case. What I noted in many news articles that was not discussed was the impact of the courts and social media presence on the people taking care of this child day in and day out. The feelings of the healthcare team.

Ethical Issues

• Degenerative disease process with poor prognosis
• Minimal treatment options
• Time sensitive (child’s condition)
• Ethics committee determination vs courts
• Health care team daily moral distress

As a neonatal respiratory therapist, I remember caring for children with extraordinarily poor prognoses. You want the best for the child. You hope the child has a miracle, gets better, goes home, and leads this wonderful life that the parents are happy it is a wonderful family unit. You know that that is not always possible. While the healthcare team's moral distress is not a topic of conversation, I often wonder, in this case, not only did the healthcare providers have to deal with the moral distress of the child passing away, the futility of the medical intervention, but also the backlash of the public via social media. I hope those healthcare providers were not unduly burdened with that public backlash.

Modern Medical Futility

Here s a bit more of a recent case, a little closer to home. In September 2020, an infant was found unconscious in a bathtub. He was resuscitated, taken to the nearest healthcare facility, intubated, and placed on mechanical ventilation. Six days later, he was pronounced brain-dead. The healthcare team proposed that the mechanical ventilation be withdrawn, and the child be allowed to pass, but the family hoped the child would recover and go home with them. They perceived that the presence of a heartbeat indicated the child was alive, even though the medical team had pronounced brain death. The hospital countered that mechanical ventilation will not reverse that brain death or, what they called, signs of post-mortem deterioration. The courts did not rule in the family's favor. It is important to note that in Texas, there is a law that provides 10 days from the declaration of futility with regard to mechanical ventilation that the family has to be provided with notice. It is a fairly detailed process, but the family must be notified.

The healthcare team has to support the family, with resources, with the opportunity to seek another opinion or another healthcare facility that would take the patient. There is a 10-day process that would allow the hospital to remove the mechanical ventilation in this type of situation. The courts did not rule in the family's favor. The child died on October 7th after being extubated and removed from the mechanical ventilation. Similar to the prior case, this issue involves the futility of the mechanical ventilation intervention and the patient and family's autonomy. Unfortunately, the family's belief and understanding of the child's condition was at odds with the determination of what the healthcare team found with that determination of brain death.

We are asking the patient's family to make that objective, logical decision again at the worst times of their lives. I am not criticizing the hospital at all for the way they handled this situation. I am sure they worked with the family. I am sure they did a lot of work with counselors and social workers, as many folks tried to help the family as much as possible. This highlights how important it is to communicate effectively early and often with the family about the patient's status, goals, expectations, and logical outcomes. I certainly do not fault the family for holding out as much hope as they could that their child would recover. The six cases we discussed were very public and focused on prolonging life. It is just a small, small, small, small sample of the medical futility cases that happen on a regular basis around the country and the world. Not all of our experiences with futility are going to be this dramatic. Everyday futility issues involve a particular intervention at a particular time for a specific patient.

Ethical Issues

I will go back to what we talked about several slides ago, where the importance of individualizing this, the care provided, and how we approach each patient with these situations at the time it occurs is important. , how do we resolve these issues? The sad news is we are not going to be successful in resolving them all. I wish we could.

Futility Resolution

We have some strategies that could help mitigate some situations and improve turnout. Again, early, early often communication. Be clear about the patient's prognosis. Be clear about what the options entail. What are realistic outcomes? Find where that disconnect is happening. What does the patient's family know? What is the truth? Where and how are they reconciling that information? There are a few resources that could help you out with this. A decision aid is like a worksheet or some interactive thing, mostly worksheets, that can help patients' families walk through a questionnaire, ask them specific questions, provide treatment options, break things down into very readable levels, and remove the medical jargon.

Even in some cases, it helps them clarify their values as they work to be a more integrated part of the decision-making for that particular patient. Understand your causes of conflict. Ask questions. What does "Do everything" mean to you? Many respiratory therapists have lamented over the years, "Oh, there is this frail elderly lady whose children and grandchildren insist we do full CPR. When they say to do everything to save their loved one, what does that mean?" Do you want me to push on her chest to beat her heart externally? Do you want us to use medications to make her heart beat? You know, what exactly does that mean?

There is a reason that the American Heart Association advocates for families in the room during CPR. They can see what everything means. Again, their prior medical experiences, their religious beliefs, their cultural background, and their education level all these factors are going to impact how the family perceives medical care and medical intervention. Explain all recommended treatment options with benefits burdens, even if it is small or relatively small. For example, if you told me chemotherapy is an option for you, you could have a 99% recovery rate with chemotherapy. In my perception, a little bit of nausea is not that big of a deal. Regardless of how inconsequential we, the healthcare provider, think that intervention might be or that, the benefit or the burden or what have you, we have to explain everything to the patient so that they can come back with all of the facts, say, "Can I tolerate the side effects of this medication for this level of benefit or survival rate?"

If you tell me I need chemotherapy, but it has a 20% survival rate, I might have a different answer than if you told me chemotherapy with a 90% survival rate. Then know your resources. I will always advocate for the ethics committee. They are there to support you. They help you, the family, and the patient work through conflict. Highly recommend that. But also know who's on your support staff as well. Social workers are absolute gems. Use your social workers. Call your social workers. Even if they cannot directly help with whatever's going on, they have a wide variety of resources at their fingertips. They could put you in contact with some folks who could do some positive good. I would also recommend the chaplaincy service. The chaplain service may not be of the same religious background as the patient, but they could help facilitate getting someone from that spiritual background to help the patient's family in that time of trouble. I highly recommend those resources.

Take Home Points

To wrap up our main points, I want to reiterate that a futile intervention is more burdensome than beneficial and cannot appreciably alter the disease course. Especially in times of resource allocation issues, just because we can provide the intervention does not mean that it is indicated or appropriate in every case. As healthcare providers who are required to participate in providing futile treatment or therapy, we must understand that those folks are at a higher risk of burnout and moral distress. I do want to stress that while intervention may be futile, care is never futile. Regardless of the intervention or the lack thereof, our patients deserve high-quality care our compassion. 

Questions and Answers

When we are in the medical field working with our patients, talking with the physicians working with the nurses, sometimes it can get a little convoluted who is the ultimate decider.

It is hard, and it is hard to bracket ourselves. To say, you know, I have my own opinion. I have my belief system. I have my morality. I am this person. I am not a robot, right? I am not an automaton taking care of this patient out of context with what I feel. One of the stories I tell quite frequently is that we had a child with a complex heart disease disorder defect when I was still working in pediatrics. The patient needed a transplant their condition deteriorated. I want to say the child was two-ish, young, not an infant, but not old by any stretch. His condition deteriorated he was placed on ECMO. After the first week, you know, you get a little nervous, you know, the more time on ECMO, the more likely that other organs will start to fail. During the second week, I am getting a little more uncomfortable. By the end of the third week on ECMO, I told my boss I could not do it anymore. I felt strongly that I was, that the parents were not doing the right thing for the child. It was too long, and it was burdensome. Even if the child could get a heart, at this point, how much damage have we done to his other organs? What is the likelihood? t least I could bracket myself and say I am unable to provide compassion, not towards the child, but towards the family, who, of course, was at the child's bedside 24/7, as they should have been. I struggled. At that moment, I figured the best thing for me to do was step aside and let another provider who could provide that family with the compassionate care they deserved step in doing that work. That child stayed on ECMO for 31 days. On the 31st day, he received a heart transplant. Two weeks later, he went home.

That is an example of a miracle that does not always happen. I did not expect that. That impressed upon me the need to acknowledge my feelings, how I would make a decision, how I would approach a situation, and that it is not my decision to make either. We can provide the families with all of the interventions. I respect the physicians who kept moving and doing the right things to help this kid stay as healthy as possible so he could get the transplant. That was a lot of years ago, that was before modern ECMO. That was, you know, that was, I am not going to say how many years ago. We have refined our practices and are doing much better, but that story will always stay with me. It humbled me in a lot of ways. For every story like that, there are 10 that went the other way. this is why these situations cause us much moral distress because we want the best outcome. We want these patients to go home and live wonderful, fulfilling lives. That does not always happen. That is hard to deal with 24. it is hard to watch interventions performed on a patient when you are not convinced that that patient will survive. It is hard. It is a hard situation.

Since I have come to work in more rehabilitation scenarios, I have had to pull back my bias on what is futile and what is not. 

Absolutely. As respiratory therapists, we are in a weird spot because we are not making that determination futile, right? That is typically a physician who makes that determination. We are still thinking about it. We are still thinking, why am I doing this? Why am I going to this? At the same time, that statement makes me reflect on my patient who had ALS. Yeah, it can be frustrating to give an intervention, but who determines the outcome, and what is the goal for that? In the case of the person with ALS, it was that non-invasive ventilation. For the respiratory therapist, the non-invasive ventilation's purpose is to help us prevent mechanical ventilation intubation. To improve gas exchange, improve the patient's condition, and bridge recovery. To alleviate shortness of breath, to do all of these things. This patient's outcomes did not align with what the respiratory therapist typically did. This patient was going to die. That was the prognosis of this condition. It continues to be the prognosis of this condition. It is a horrifying disease that can last a couple of years or many years. It is just an outrageously sad situation. Her need for that intervention was not to get better. It was not to bridge her to recovery. Whatever the intervention was, the goal was not to keep her alive or do better. It was to reduce her anxiety. It was to help her control her breathing. It was to provide her with comfort in a situation she had zero control over. She had a very unique communication style that her family and therapist had worked out. When I talked with her, I said, "You understand this will not make you better." She acknowledged that. I, this mask, she was wearing a full face mask. This mask is not going to make her better. But it is going to calm her down. It is going to help her breathe a little easier. It will give her more time with her loved ones before she passes. That, I think, was hard for the respiratory therapist in that ICU because people come into the ICU, get intervention, and go out. It is that cycle to watch a patient get put on mechanical ventilation, non-invasive ventilation, or high-flow nasal cannula.

That is a hard thing to wrap your brain around. I never followed up with the respiratory therapists taking care of her, but I am hopeful that those respiratory therapists sat back and said, "Okay, I need to check my bias in this situation and recognize the intended outcome. My understanding of the intended outcome was not the same as the families. While I made a big deal of making sure that the family had a clear expectation of the outcomes of whatever the intervention was. I think I could also turn this back onto the care team to ensure we communicate the expectations with the entire care team. For those of us who do not go on rounds, perhaps you need to go on rounds to make sure you ask, "What is the expectation of this intervention? What do you expect it to do? If the goal is to get up, walk out, and have a steak dinner, that might not be a realistic goal. .

References

Brown EA. Ethnic and Cultural challenges at the end of life: setting the scene. J Renal Care 2014;40(Suppl 1):2 - 5.

Burns JP, Truog RD. Futility: a concept in evolution. CHEST 2007;132(6):1987 - 1993. 

Cifrese L, Rincon F. Futility and Patients Who Insist on Medically Ineffective Therapy. Semin Neurol 2018;38(5):561 - 568. 

Close E, White BP, Willmott L, Gallois C, Parker M, Graves N, Winch S. Doctors’ perceptions of how resource limitations relate to futility in end-of-life decision making: a qualitative analysis. J Med Ethics 2019;45(6):373 - 379. 

Fleming DA. Futility: revisiting a concept of shared moral judgment. HECFORUM 2005; 17(4): 260-275.

Citation

Strickland, S (2022). Futile or Fruitful: Medical Interventions and the Respiratory Therapist. Continued.com - Respiratory Therapy, Article 172. Available at www.continued.com/respiratory-therapy