- Email: [email protected]
Therapeutic nihilism of neurological diseases: A comparative qualitative study
Journal of Clinical Neuroscience xxx (xxxx) xxx
Contents lists available at ScienceDirect
Journal of Clinical Neuroscience journal homepage: www.elsevier.com/locate/jocn
Clinical study
Therapeutic nihilism of neurological diseases: A comparative qualitative study Cara Sedney a,b, Amy Kurowski-Burt a,c,⇑, Matthew Smith a,d, Pat Dekeseredy a,b, Carl Grey a,e, SoHyun Boo a,f a
West Virginia University, Health Sciences Center, School of Medicine, United States Department of Neurosurgery, United States Department of Human Performance, Division of Occupational Therapy, United States d Department of Neurology, United States e Geriatric Medicine and Palliative Care, United States f Department of Radiology, United States b c
a r t i c l e
i n f o
Article history: Received 15 May 2019 Accepted 4 August 2019 Available online xxxx Keywords: Nihilism Neurological disease Provider perspectives
a b s t r a c t Objective: The notion of therapeutic nihilism may lead to early removal of care based upon perceived poor prognosis. The goal of this study was to examine if differences for nihilism perspectives exist between professions and within professions at the different levels of experience and exposure to neurological conditions. Method: Survey methods was used to assess perception of care futility and therapeutic nihilism using six case-based scenarios followed by five questions regarding practitioner care choices and perspective. Participants were student and professional occupational and physical therapists, nurses, and doctors (n = 110). Thematic analysis was completed to determine influences on patient care. Results: Six themes (quality of life, provider experience, prognosis/treatability, medical details, patient’s age, and family/patient wishes) emerged that influenced treatment decisions across all participants. All provider groups reported prognosis and treatability as their number one factor for treatment decisions, then therapists mentioned QOL most, nurses cited age, and doctors said medical details. Differences between students and professionals were also apparent. Discussion: The perceived ability of the patient to recover (prognosis/treatability) with medical care was the most commonly cited reason for aggressive measures, with quality of life, medical details, and patient age also representing strong themes across disciplines and level of training. Ó 2019 Elsevier Ltd. All rights reserved.
Neurological illnesses are often viewed as having a unique impact on a patient’s recoverability and quality of life, leading to a centuries-old perception that such conditions are hopeless and have no cure [1]. This perception persists even in the face of medical advancements in the treatment of neurologic conditions. The concept of therapeutic nihilism, or skepticism regarding the worth of therapeutic agents especially in a particular disease, as defined by Merriam-Webster, may lead to early withdrawal of care based upon perceived poor prognosis. This has been well characterized in the study of intracranial hemorrhage, wherein having a do-not-resuscitate (DNR) status was an independent predictor of
⇑ Corresponding author at: PO Box 9139, Morgantown, WV 26506, United States. E-mail address: [email protected] (A. Kurowski-Burt).
mortality and poor outcome, independent of any clinical factor upon which the decision to limit care may be based [2]. In addition to the effects of therapeutic nihilism on patient care as a result of care limitations, the perception of futility (either accurately or inaccurately) can also affect the healthcare environment. The idea of futile care is likely based upon a provider’s knowledge base and previous experience with similar patients. This has been shown to vary based upon a number of factors such as years of experience for ICU nurses [4], and fellowship training in ICU physicians [5]. The perception of futile care has, in turn, been shown to contribute to moral distress, burnout, and lower job satisfaction in healthcare workers [4,6]. While the concepts of futility and therapeutic nihilism seem to vary based upon years of experience and subspecialty training, it is not known whether all members of the healthcare team share the same assessment of which clinical cases may be futile
https://doi.org/10.1016/j.jocn.2019.08.013 0967-5868/Ó 2019 Elsevier Ltd. All rights reserved.
Please cite this article as: C. Sedney, A. Kurowski-Burt, M. Smith et al., Therapeutic nihilism of neurological diseases: A comparative qualitative study, Journal of Clinical Neuroscience, https://doi.org/10.1016/j.jocn.2019.08.013
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C. Sedney et al. / Journal of Clinical Neuroscience xxx (xxxx) xxx
and which are not. The goal of this study was to examine if differences for nihilism perspectives exist between professions and within professions at the different levels of experience and exposure to neurological conditions. 1. Methods 1.1. Design The researchers used survey methods to assess perception of care futility and therapeutic nihilism using six case-based scenarios followed by five questions regarding practitioner care choices and perspective. After institutional review board approval, the survey, with a cover letter and advertisement, was emailed to various health care professionals and students from medicine, nursing, physical therapy, and occupational therapy. The survey was available for four weeks. Participants chose to participate completed the survey online using the REDCap web application.
1.2. Instrument The researchers developed the survey (see Appendix A) and case-based scenarios (see Fig. 1). The case-based scenarios addressed six different neurological conditions (i.e., dementia, diabetic neuropathy, stroke, spinal cord injury, spinal infection) with varied ages and genders (i.e., two 60-year old males, two 60-year old females, one 20-year old male, and one 20-year old female). For each case the patient’s age, diagnosis, neurologic exam, and brief medical history were included. After each case, the participants were asked the following questions: identify the patient’s prognosis on a scale of 1–7 (1 = very poor, 7 = excellent); identifying appropriateness of CPR and supportive devices by circling yes or no; rating the practitioner’s level of care recommended on a scale of 1–7 (1 = comfort measures only, 7 = all possible intervention), and an open-ended question on what influenced their decisions for the previous questions. The survey also included demographic questions for the participants to identify their
CASE 1 A 60-year old female has had Alzheimer's Dementia for 7 years. She can no longer feed, dress, bathe or toilet herself. She develops pneumonia and is hospitalized. While you are getting her history, you find out from the patient's daughter that the patient has been coughing after swallowing food and drink. CASE 2 A 60-year old male with a history of diabetes mellitus (DM) is a new patient in your clinic. He also presents with numbness and tingling (neuropathy) in both hands and feet, cataracts bilaterally, high blood pressure, and is overweight. He complains of an open sore on the calf of her right leg, which is also significantly swollen. CASE 3 A 60-year old female brought to emergency department by her daughter was found lying next to her bed paralyzed on the left side, with slurred speech and neglecting her left side of her body. The daughter reports that she is unsure of how long her mother was lying there. After your assessment, it is determined this patient suffered a right middle cerebral artery (MCA) occlusion. This is her 2nd stroke. CASE 4 A 20-year old male is admitted to the Intensive Care Unit (ICU) after a fall from a roof with a fracture-dislocation at C5C6 (neck region) with obvious damage to the spinal canal as per a CT scan. He has been intubated (tube placement for breathing). While you are evaluating him, he is minimally responsive (responds a little to touch, sounds, etc.) and has no movement of any of his arms or legs. CASE 5 A 20-year old female was found confused in the Kroger's parking lot. She was taken to the hospital and was found to have weakness in her left arm and leg. She was given an IV (intravenous) clot-busting medication (e.g., tPA) and transferred to your facility for further evaluation. You also determine she has left sided weakness, as well as neglect. While you are evaluating her, she begins to have decreased consciousness. CASE 6 A 60-year old male with a history of steroid use for lung problems presents with decreased movement of both his legs for several days, to the point that he can no longer walk. Workup reveals an infection in his spine, which is compressing his spinal cord and causing the paralysis (decreased use of both legs). Fig. 1. Six clinical scenarios.
Please cite this article as: C. Sedney, A. Kurowski-Burt, M. Smith et al., Therapeutic nihilism of neurological diseases: A comparative qualitative study, Journal of Clinical Neuroscience, https://doi.org/10.1016/j.jocn.2019.08.013
C. Sedney et al. / Journal of Clinical Neuroscience xxx (xxxx) xxx
discipline, rank (i.e., student, attending, resident, faculty, preceptor), year of training, and types of clinical rotations completed or specialty area of practice. 1.3. Participants The participants were selected via convenience sampling. All participants were recruited from the university and affiliated teaching hospital in XXX\ (n = 110). Medical residents and faculty were included as practitioners and five participants did not record their specialty and were not included in the analysis. Please refer to Table 1 for a description of the sample. 1.4. Data analysis Qualitative data was uploaded into NVivo 11 for Windows for analysis [7]. A content analysis was conducted on the qualitative data written by the participants to support their decisions on care. Comments were anonymous and investigators were blinded as to level of training and discipline during analysis. Modified thematic analysis was undertaken on all free text comments, in which overarching themes were extracted, refined, and organized by open and axial coding. Overarching themes were identified for further analysis based upon level of training and discipline. 2. Results Six themes emerged that influenced treatment decisions across all participants. They included quality of life, provider experience, prognosis/treatability, medical details, patient’s age, and family/patient wishes. Theme distribution across discipline can be found in Table 2, while theme distribution across level of training can be found in Table 3. 2.1. Quality of life Quality of life (QOL) included references to suffering, independence, cognitive ability, ability to complete ADLs, and functional status. All the specialties and levels of training considered QOL. Chance for improved quality of life was mentioned in most scenarios with the exception of the dementia case. One nursing student wrote about the Alzheimer’s scenario (Case 1), ‘‘The patient’s quality of life has got worse and it doesn’t seem right to make her suffer more through life if she can’t enjoy it.” The spinal cord injury from the fall (Case 4) had both positive and negative comments on impact on QOL. A nursing faculty member stated, ‘‘Could live a full life despite being quadriplegic.” And a nursing student stated, ‘‘The patient seems like he may not get better, and if he did, his quality of life would be low.” 2.2. Provider experience Provider experience, including both personal experiences and previous clinical experiences, was present particularly amongst nursing students. Although the majority of these comments were from nurses, a smaller number of MDs (5 of 20 comments) and
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one therapist mentioned provider experience as a factor in their decision. My grandmother passed of Alzheimer’s one month ago. That event, coupled with the year I spent working in an ER, has left me of the opinion that those who are no longer mentally cognizant do not necessarily need to be resuscitated in every circumstance. I do think each situation should be viewed uniquely, but these are the choices I would want made were I this patient. -MD student
2.3. Prognosis/treatability Prognosis/treatability reflects the healthcare worker’s perception of how successful treatment would be at reversing or ameliorating the patient’s condition. The prognosis/treatability of each condition was the most commonly cited reason for a treatment decision, either positive or negative. Spinal infections are able to be treated if approached aggressively. The medical team should ensure that this is done and ensure that this man can live after this infection as long as it has not spread to causes sepsis or something worse. If treated quickly, the nervous innervation can be fixed and/or reversed” -Nurse Another nurse commented, ‘‘It sounds as though she is in end stage disease process. Medical intervention will not change the progression and will likely cause more problems.” 2.4. Medical details The theme of medical details includes clinical facts that were either known or unknown, that would or did affect the provider’s decision. Examples include specific level of a spinal fracture, presence of an intracranial hemorrhage after medication administration, acuity of symptoms, time to surgery in spinal infection, Glasgow Coma Scale, and past medical history. One medical resident participant noted: ‘‘Likely phrenic nerve injury, will be vent dependent. Possible artery dissection with lack of response”. Similar to using prognosis/treatability as above to make a decision, this was a frequently mentioned topic for the medical doctor group. 2.5. Patient age The theme of patient age included both positive and negative references to age, with cases four and five in particular reflecting younger patients. The age of the patient was mentioned 163 times when considered how aggressive to be in treating the patient’s neurologic disease. Interestingly, age was considered by some to be a positive factor, while in others was considered to be a negative factor. A medical student remarked, ‘‘Young age, use of TPA, witnessed events with appropriate and immediate treatment, and no current permanent deficits steer me towards a more aggressive treatment plan and improved prognosis.” When considering level of training, students were more likely to use age when deciding if aggressive treatment should be considered. 2.6. Family/patient wishes
Table 1 Participants by Specialty.
Nurses Therapists MDs Total
Practitioner
Student
Total
13 2 51 66
25 11 8 44
38 13 59 110
Family and patient wishes included all references to advance directives, patient preferences, etc. Family and patient wishes factored prominently in the thought process of all specialties but was significantly less for MDs when compared to nurses and therapists. A participant stated, ‘‘These decisions are really up to the family. So, if the family is still willing to take care of her or pay someone to take care of her, then we should offer all services possible.” A medicine
Please cite this article as: C. Sedney, A. Kurowski-Burt, M. Smith et al., Therapeutic nihilism of neurological diseases: A comparative qualitative study, Journal of Clinical Neuroscience, https://doi.org/10.1016/j.jocn.2019.08.013
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C. Sedney et al. / Journal of Clinical Neuroscience xxx (xxxx) xxx Table 2 Number of Responses by Theme Note: QOL = quality of life, PE = provider experience, PX = prognosis/ treatability, D = medical details, W = family/patient wishes. Theme
Count
Therapist n = 13
Nurse n = 38
Doctor n = 59
QOL PE PX D Age W
151 20 295 179 163 82
23 1 44 20 19 20
53 14 102 64 69 39
75 5 149 95 75 23
Table 3 Theme Distribution by Level of Training Note: QOL = quality of life, PE = provider experience, PX = prognosis/treatability, D = medical details, W = family/patient wishes. Theme
Count
Practitioner
Student
QOL PE PX D Age W
151 20 295 175 163 68
81 3 161 101 77 30
70 17 134 74 86 38
faculty member remarked, ‘‘It does not matter what the caregiver’s thoughts or feelings are. What matters are the patient’s wishes or end of life decisions the patient or the patient’s family acting as HCPOA proxy deem appropriate for the patient.”
3. Discussion Health care professionals and students considered many factors when confronted with how aggressively to treat patients in various neurological scenarios. Overall, the perceived ability of the patient to recover (prognosis/treatability) with medical care was the most commonly cited reason for aggressive measures. Quality of life, medical details, and patient age also represented with strong themes across discipline and level of training. This closely coincides with the assertion of Hemphill and White [3] that prognostication is of prime importance in neurologic diagnoses. Despite all providers reporting prognosis and treatability as their number one factor for treatment decisions, therapists then mentioned QOL most, nurses cited age, and doctors said medical details. Nurses also were more likely to consider patient and family wishes and provider experience as compared to therapists and doctors. This is an interesting concept as it delineates professional perspective of focus based on the focus on treatment guidelines. For example, therapists are trained to take into perspective QOL as a factor for change. If therapists believe that QOL can be improved regardless of other components of the patient, then they will proceed with intervention. Whereas, doctors consider medical details as a defining factor in decision making possibly due to their training to consider all elements of diagnosis and medical history. Nurses are the providers who spend the most time with the patients and families, so it should not surprise that they were the profession to most speak about this within their decision making process.
Students in all three specialties were more likely to consider age, their own personal and professional experience, and patient/family wishes. And practitioners were more likely to rely on prognosis, QOL, and medical details to support their decision on treatment. This multifactorial calculation parallels the findings of Neville et al. [5], who noted more nuanced approaches to the determination of care futility in critical care faculty members as opposed to fellows in an ICU setting. Differences in decision making on aggressive care in neurologic disease based upon discipline and level of training can significantly affect healthcare team dynamics. Mobley et al. [4] have noted increased moral distress amongst nurses in cases of perceived futile care. In this setting, nurses who were older or more experienced in ICU care had increased level of moral distress. Furthermore, Ozden, Karagozoglu, & Yildirim, [6] have found that moral distress due to care futility in turn contributes to nursing burnout, lower job satisfaction, and increased emotional exhaustion. Importantly, perceived futility may not equate with actual futility; perceptions appear to vary based upon discipline. Therefore, it is imperative that all members of the healthcare team are involved in enacting healthcare plans and have the opportunity to voice concerns.
3.1. Limitations It is impossible to convey true status using a brief written scenario. Many of the respondents indicated that they would need more information on baseline function as well as the patients advanced directives, if any to make a decision on course of treatment. Another limitation is that this survey was sent to a broad range of healthcare professionals and not those who specifically specialize in neurological disease. Furthermore, advanced practice providers, which play an increasing role in healthcare, are not represented. Also, those students and practitioners with strong beliefs on care in neurologic illness may have been more likely to respond to this survey, leading to selection bias. The sample for this study was limited due to sample size and convenience sampling.
4. Conclusion Health care professionals consider many factors when confronted with how aggressively to treat patients in various neurological scenarios. Overall the perceived ability of the patient to recover (prognosis/treatability) with medical care was the most commonly cited reason for aggressive measures, with quality of life, medical details, and patient age also representing strong themes across disciplines and level of training.
Please cite this article as: C. Sedney, A. Kurowski-Burt, M. Smith et al., Therapeutic nihilism of neurological diseases: A comparative qualitative study, Journal of Clinical Neuroscience, https://doi.org/10.1016/j.jocn.2019.08.013
C. Sedney et al. / Journal of Clinical Neuroscience xxx (xxxx) xxx
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Appendix A Case 1 An 60-year old female has had Alzheimer’s Dementia for 7 years. She can no longer feed, dress, bathe or toilet herself. She develops pneumonia and is hospitalized. While you are getting her history, you find out from the patient’s daughter that the patient has been coughing after swallowing food and drink.
Case 2 A 60-year old male with a history of diabetes mellitus (DM) is a new patient in your clinic. She also presents with numbness and tingling (neuropathy) in both hands and feet, cataracts bilaterally, high blood pressure, and is overweight. She complains of an open sore on the calf of her right leg, which is also significantly swollen.
Please cite this article as: C. Sedney, A. Kurowski-Burt, M. Smith et al., Therapeutic nihilism of neurological diseases: A comparative qualitative study, Journal of Clinical Neuroscience, https://doi.org/10.1016/j.jocn.2019.08.013
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C. Sedney et al. / Journal of Clinical Neuroscience xxx (xxxx) xxx
Case 3 A 60-year old female brought to emergency department by her daughter was found lying next to her bed paralyzed on the left side, with slurred speech and neglecting her left side of her body. The daughter reports that she is unsure of how long her mother was lying there. After your assessment, it is determined this patient suffered a right middle cerebral artery (MCA) occlusion. This is her 2nd stroke.
Case 4 A 20-year old male is admitted to the Intensive Care Unit (ICU) after a fall from a roof with a fracture-dislocation at C5-C6 (neck region) with obvious damage to the spinal canal as per a CT scan. She has been intubated (tube placement for breathing). While you are evaluating her, she is minimally responsive (responds a little to touch, sounds, etc.) and has no movement of any of her arms or legs.
Please cite this article as: C. Sedney, A. Kurowski-Burt, M. Smith et al., Therapeutic nihilism of neurological diseases: A comparative qualitative study, Journal of Clinical Neuroscience, https://doi.org/10.1016/j.jocn.2019.08.013
C. Sedney et al. / Journal of Clinical Neuroscience xxx (xxxx) xxx
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Case 5 A 20-year old female was found confused in the Kroger’s parking lot. She was taken to the hospital and was found to have weakness in her left arm and leg. She was given an IV (intravenous) clot-busting medication (e.g., tPA) and transferred to your facility for further evaluation. You also determine she has left sided weakness, as well as neglect. While you are evaluating her, she begins to have decreased consciousness.
Case 6 A 60-year old male with a history of steroid use for lung problems presents with decreased movement of both his legs for several days, to the point that he can no longer walk. Workup reveals an infection in his spine, which is compressing his spinal cord and causing the paralysis (decreased use of both legs).
Please cite this article as: C. Sedney, A. Kurowski-Burt, M. Smith et al., Therapeutic nihilism of neurological diseases: A comparative qualitative study, Journal of Clinical Neuroscience, https://doi.org/10.1016/j.jocn.2019.08.013
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C. Sedney et al. / Journal of Clinical Neuroscience xxx (xxxx) xxx
Please identify your discipline, rank, and year of training:
Appendix B. Supplementary data Supplementary data to this article can be found online at https://doi.org/10.1016/j.jocn.2019.08.013. References [1] Biller J, Love B. Nihilism and stroke therapy. Stroke 1991;22(9):1105–7. https:// doi.org/10.1161/01.STR.22.9.1105. [2] Brizzi M, Abul-Kasim K, Jalakas M, Selariu E, Pessah-Rasmussen H, Zia E. Early do-not-resuscitate orders in intracerebral haemorrhage; frequency and predictive value for death and functional outcome. A retrospective cohort study. Scand J Trauma Resuscitation Emergency Med 2012;20(36):1–6. https:// doi.org/10.1186/1757-7241-20-360.
[3] Hemphill III JC, White DB. Clinical nihilism in neuro-emergencies. Emergency Med Clinics North Am 2009;27(1):27–37. https://doi.org/10.1016/j. emc.2008.08.009. [4] Mobley MJ, Rady MY, Verheijde JL, Patel B, Larson JS. The relationship between moral distress and perception of futile care in the critical care unit. Intensive Crit Care Nurs 2007;23(5):256–63. https://doi.org/10.1016/j.iccn.2007.03.011. [5] Neville TH, Wiley JF, Holmboe ES, Tseng CH, Vespa P, Kleerup EC, et al. Differences between attendings’ and fellows’ perceptions of futile treatment in the intensive care unit at one academic health center: Implications for training. Acad Med 2015;90(3):324–30. [6] Ozden D, Karagozoglu S, Yildirim G. Intensive care nurses’ perception of futility: Job satisfaction and burnout dimensions. Nursing Ethics 2013;20(4):436–47. https://doi.org/10.1177/0969733012466002. [7] QRS International Pty Ltd (2017). NVivo 11 Pro for Windows (Version 11.4) [Computer software]: QRS International Pty Ltd.
Please cite this article as: C. Sedney, A. Kurowski-Burt, M. Smith et al., Therapeutic nihilism of neurological diseases: A comparative qualitative study, Journal of Clinical Neuroscience, https://doi.org/10.1016/j.jocn.2019.08.013
Contents lists available at ScienceDirect
Journal of Clinical Neuroscience journal homepage: www.elsevier.com/locate/jocn
Clinical study
Therapeutic nihilism of neurological diseases: A comparative qualitative study Cara Sedney a,b, Amy Kurowski-Burt a,c,⇑, Matthew Smith a,d, Pat Dekeseredy a,b, Carl Grey a,e, SoHyun Boo a,f a
West Virginia University, Health Sciences Center, School of Medicine, United States Department of Neurosurgery, United States Department of Human Performance, Division of Occupational Therapy, United States d Department of Neurology, United States e Geriatric Medicine and Palliative Care, United States f Department of Radiology, United States b c
a r t i c l e
i n f o
Article history: Received 15 May 2019 Accepted 4 August 2019 Available online xxxx Keywords: Nihilism Neurological disease Provider perspectives
a b s t r a c t Objective: The notion of therapeutic nihilism may lead to early removal of care based upon perceived poor prognosis. The goal of this study was to examine if differences for nihilism perspectives exist between professions and within professions at the different levels of experience and exposure to neurological conditions. Method: Survey methods was used to assess perception of care futility and therapeutic nihilism using six case-based scenarios followed by five questions regarding practitioner care choices and perspective. Participants were student and professional occupational and physical therapists, nurses, and doctors (n = 110). Thematic analysis was completed to determine influences on patient care. Results: Six themes (quality of life, provider experience, prognosis/treatability, medical details, patient’s age, and family/patient wishes) emerged that influenced treatment decisions across all participants. All provider groups reported prognosis and treatability as their number one factor for treatment decisions, then therapists mentioned QOL most, nurses cited age, and doctors said medical details. Differences between students and professionals were also apparent. Discussion: The perceived ability of the patient to recover (prognosis/treatability) with medical care was the most commonly cited reason for aggressive measures, with quality of life, medical details, and patient age also representing strong themes across disciplines and level of training. Ó 2019 Elsevier Ltd. All rights reserved.
Neurological illnesses are often viewed as having a unique impact on a patient’s recoverability and quality of life, leading to a centuries-old perception that such conditions are hopeless and have no cure [1]. This perception persists even in the face of medical advancements in the treatment of neurologic conditions. The concept of therapeutic nihilism, or skepticism regarding the worth of therapeutic agents especially in a particular disease, as defined by Merriam-Webster, may lead to early withdrawal of care based upon perceived poor prognosis. This has been well characterized in the study of intracranial hemorrhage, wherein having a do-not-resuscitate (DNR) status was an independent predictor of
⇑ Corresponding author at: PO Box 9139, Morgantown, WV 26506, United States. E-mail address: [email protected] (A. Kurowski-Burt).
mortality and poor outcome, independent of any clinical factor upon which the decision to limit care may be based [2]. In addition to the effects of therapeutic nihilism on patient care as a result of care limitations, the perception of futility (either accurately or inaccurately) can also affect the healthcare environment. The idea of futile care is likely based upon a provider’s knowledge base and previous experience with similar patients. This has been shown to vary based upon a number of factors such as years of experience for ICU nurses [4], and fellowship training in ICU physicians [5]. The perception of futile care has, in turn, been shown to contribute to moral distress, burnout, and lower job satisfaction in healthcare workers [4,6]. While the concepts of futility and therapeutic nihilism seem to vary based upon years of experience and subspecialty training, it is not known whether all members of the healthcare team share the same assessment of which clinical cases may be futile
https://doi.org/10.1016/j.jocn.2019.08.013 0967-5868/Ó 2019 Elsevier Ltd. All rights reserved.
Please cite this article as: C. Sedney, A. Kurowski-Burt, M. Smith et al., Therapeutic nihilism of neurological diseases: A comparative qualitative study, Journal of Clinical Neuroscience, https://doi.org/10.1016/j.jocn.2019.08.013
2
C. Sedney et al. / Journal of Clinical Neuroscience xxx (xxxx) xxx
and which are not. The goal of this study was to examine if differences for nihilism perspectives exist between professions and within professions at the different levels of experience and exposure to neurological conditions. 1. Methods 1.1. Design The researchers used survey methods to assess perception of care futility and therapeutic nihilism using six case-based scenarios followed by five questions regarding practitioner care choices and perspective. After institutional review board approval, the survey, with a cover letter and advertisement, was emailed to various health care professionals and students from medicine, nursing, physical therapy, and occupational therapy. The survey was available for four weeks. Participants chose to participate completed the survey online using the REDCap web application.
1.2. Instrument The researchers developed the survey (see Appendix A) and case-based scenarios (see Fig. 1). The case-based scenarios addressed six different neurological conditions (i.e., dementia, diabetic neuropathy, stroke, spinal cord injury, spinal infection) with varied ages and genders (i.e., two 60-year old males, two 60-year old females, one 20-year old male, and one 20-year old female). For each case the patient’s age, diagnosis, neurologic exam, and brief medical history were included. After each case, the participants were asked the following questions: identify the patient’s prognosis on a scale of 1–7 (1 = very poor, 7 = excellent); identifying appropriateness of CPR and supportive devices by circling yes or no; rating the practitioner’s level of care recommended on a scale of 1–7 (1 = comfort measures only, 7 = all possible intervention), and an open-ended question on what influenced their decisions for the previous questions. The survey also included demographic questions for the participants to identify their
CASE 1 A 60-year old female has had Alzheimer's Dementia for 7 years. She can no longer feed, dress, bathe or toilet herself. She develops pneumonia and is hospitalized. While you are getting her history, you find out from the patient's daughter that the patient has been coughing after swallowing food and drink. CASE 2 A 60-year old male with a history of diabetes mellitus (DM) is a new patient in your clinic. He also presents with numbness and tingling (neuropathy) in both hands and feet, cataracts bilaterally, high blood pressure, and is overweight. He complains of an open sore on the calf of her right leg, which is also significantly swollen. CASE 3 A 60-year old female brought to emergency department by her daughter was found lying next to her bed paralyzed on the left side, with slurred speech and neglecting her left side of her body. The daughter reports that she is unsure of how long her mother was lying there. After your assessment, it is determined this patient suffered a right middle cerebral artery (MCA) occlusion. This is her 2nd stroke. CASE 4 A 20-year old male is admitted to the Intensive Care Unit (ICU) after a fall from a roof with a fracture-dislocation at C5C6 (neck region) with obvious damage to the spinal canal as per a CT scan. He has been intubated (tube placement for breathing). While you are evaluating him, he is minimally responsive (responds a little to touch, sounds, etc.) and has no movement of any of his arms or legs. CASE 5 A 20-year old female was found confused in the Kroger's parking lot. She was taken to the hospital and was found to have weakness in her left arm and leg. She was given an IV (intravenous) clot-busting medication (e.g., tPA) and transferred to your facility for further evaluation. You also determine she has left sided weakness, as well as neglect. While you are evaluating her, she begins to have decreased consciousness. CASE 6 A 60-year old male with a history of steroid use for lung problems presents with decreased movement of both his legs for several days, to the point that he can no longer walk. Workup reveals an infection in his spine, which is compressing his spinal cord and causing the paralysis (decreased use of both legs). Fig. 1. Six clinical scenarios.
Please cite this article as: C. Sedney, A. Kurowski-Burt, M. Smith et al., Therapeutic nihilism of neurological diseases: A comparative qualitative study, Journal of Clinical Neuroscience, https://doi.org/10.1016/j.jocn.2019.08.013
C. Sedney et al. / Journal of Clinical Neuroscience xxx (xxxx) xxx
discipline, rank (i.e., student, attending, resident, faculty, preceptor), year of training, and types of clinical rotations completed or specialty area of practice. 1.3. Participants The participants were selected via convenience sampling. All participants were recruited from the university and affiliated teaching hospital in XXX\ (n = 110). Medical residents and faculty were included as practitioners and five participants did not record their specialty and were not included in the analysis. Please refer to Table 1 for a description of the sample. 1.4. Data analysis Qualitative data was uploaded into NVivo 11 for Windows for analysis [7]. A content analysis was conducted on the qualitative data written by the participants to support their decisions on care. Comments were anonymous and investigators were blinded as to level of training and discipline during analysis. Modified thematic analysis was undertaken on all free text comments, in which overarching themes were extracted, refined, and organized by open and axial coding. Overarching themes were identified for further analysis based upon level of training and discipline. 2. Results Six themes emerged that influenced treatment decisions across all participants. They included quality of life, provider experience, prognosis/treatability, medical details, patient’s age, and family/patient wishes. Theme distribution across discipline can be found in Table 2, while theme distribution across level of training can be found in Table 3. 2.1. Quality of life Quality of life (QOL) included references to suffering, independence, cognitive ability, ability to complete ADLs, and functional status. All the specialties and levels of training considered QOL. Chance for improved quality of life was mentioned in most scenarios with the exception of the dementia case. One nursing student wrote about the Alzheimer’s scenario (Case 1), ‘‘The patient’s quality of life has got worse and it doesn’t seem right to make her suffer more through life if she can’t enjoy it.” The spinal cord injury from the fall (Case 4) had both positive and negative comments on impact on QOL. A nursing faculty member stated, ‘‘Could live a full life despite being quadriplegic.” And a nursing student stated, ‘‘The patient seems like he may not get better, and if he did, his quality of life would be low.” 2.2. Provider experience Provider experience, including both personal experiences and previous clinical experiences, was present particularly amongst nursing students. Although the majority of these comments were from nurses, a smaller number of MDs (5 of 20 comments) and
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one therapist mentioned provider experience as a factor in their decision. My grandmother passed of Alzheimer’s one month ago. That event, coupled with the year I spent working in an ER, has left me of the opinion that those who are no longer mentally cognizant do not necessarily need to be resuscitated in every circumstance. I do think each situation should be viewed uniquely, but these are the choices I would want made were I this patient. -MD student
2.3. Prognosis/treatability Prognosis/treatability reflects the healthcare worker’s perception of how successful treatment would be at reversing or ameliorating the patient’s condition. The prognosis/treatability of each condition was the most commonly cited reason for a treatment decision, either positive or negative. Spinal infections are able to be treated if approached aggressively. The medical team should ensure that this is done and ensure that this man can live after this infection as long as it has not spread to causes sepsis or something worse. If treated quickly, the nervous innervation can be fixed and/or reversed” -Nurse Another nurse commented, ‘‘It sounds as though she is in end stage disease process. Medical intervention will not change the progression and will likely cause more problems.” 2.4. Medical details The theme of medical details includes clinical facts that were either known or unknown, that would or did affect the provider’s decision. Examples include specific level of a spinal fracture, presence of an intracranial hemorrhage after medication administration, acuity of symptoms, time to surgery in spinal infection, Glasgow Coma Scale, and past medical history. One medical resident participant noted: ‘‘Likely phrenic nerve injury, will be vent dependent. Possible artery dissection with lack of response”. Similar to using prognosis/treatability as above to make a decision, this was a frequently mentioned topic for the medical doctor group. 2.5. Patient age The theme of patient age included both positive and negative references to age, with cases four and five in particular reflecting younger patients. The age of the patient was mentioned 163 times when considered how aggressive to be in treating the patient’s neurologic disease. Interestingly, age was considered by some to be a positive factor, while in others was considered to be a negative factor. A medical student remarked, ‘‘Young age, use of TPA, witnessed events with appropriate and immediate treatment, and no current permanent deficits steer me towards a more aggressive treatment plan and improved prognosis.” When considering level of training, students were more likely to use age when deciding if aggressive treatment should be considered. 2.6. Family/patient wishes
Table 1 Participants by Specialty.
Nurses Therapists MDs Total
Practitioner
Student
Total
13 2 51 66
25 11 8 44
38 13 59 110
Family and patient wishes included all references to advance directives, patient preferences, etc. Family and patient wishes factored prominently in the thought process of all specialties but was significantly less for MDs when compared to nurses and therapists. A participant stated, ‘‘These decisions are really up to the family. So, if the family is still willing to take care of her or pay someone to take care of her, then we should offer all services possible.” A medicine
Please cite this article as: C. Sedney, A. Kurowski-Burt, M. Smith et al., Therapeutic nihilism of neurological diseases: A comparative qualitative study, Journal of Clinical Neuroscience, https://doi.org/10.1016/j.jocn.2019.08.013
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C. Sedney et al. / Journal of Clinical Neuroscience xxx (xxxx) xxx Table 2 Number of Responses by Theme Note: QOL = quality of life, PE = provider experience, PX = prognosis/ treatability, D = medical details, W = family/patient wishes. Theme
Count
Therapist n = 13
Nurse n = 38
Doctor n = 59
QOL PE PX D Age W
151 20 295 179 163 82
23 1 44 20 19 20
53 14 102 64 69 39
75 5 149 95 75 23
Table 3 Theme Distribution by Level of Training Note: QOL = quality of life, PE = provider experience, PX = prognosis/treatability, D = medical details, W = family/patient wishes. Theme
Count
Practitioner
Student
QOL PE PX D Age W
151 20 295 175 163 68
81 3 161 101 77 30
70 17 134 74 86 38
faculty member remarked, ‘‘It does not matter what the caregiver’s thoughts or feelings are. What matters are the patient’s wishes or end of life decisions the patient or the patient’s family acting as HCPOA proxy deem appropriate for the patient.”
3. Discussion Health care professionals and students considered many factors when confronted with how aggressively to treat patients in various neurological scenarios. Overall, the perceived ability of the patient to recover (prognosis/treatability) with medical care was the most commonly cited reason for aggressive measures. Quality of life, medical details, and patient age also represented with strong themes across discipline and level of training. This closely coincides with the assertion of Hemphill and White [3] that prognostication is of prime importance in neurologic diagnoses. Despite all providers reporting prognosis and treatability as their number one factor for treatment decisions, therapists then mentioned QOL most, nurses cited age, and doctors said medical details. Nurses also were more likely to consider patient and family wishes and provider experience as compared to therapists and doctors. This is an interesting concept as it delineates professional perspective of focus based on the focus on treatment guidelines. For example, therapists are trained to take into perspective QOL as a factor for change. If therapists believe that QOL can be improved regardless of other components of the patient, then they will proceed with intervention. Whereas, doctors consider medical details as a defining factor in decision making possibly due to their training to consider all elements of diagnosis and medical history. Nurses are the providers who spend the most time with the patients and families, so it should not surprise that they were the profession to most speak about this within their decision making process.
Students in all three specialties were more likely to consider age, their own personal and professional experience, and patient/family wishes. And practitioners were more likely to rely on prognosis, QOL, and medical details to support their decision on treatment. This multifactorial calculation parallels the findings of Neville et al. [5], who noted more nuanced approaches to the determination of care futility in critical care faculty members as opposed to fellows in an ICU setting. Differences in decision making on aggressive care in neurologic disease based upon discipline and level of training can significantly affect healthcare team dynamics. Mobley et al. [4] have noted increased moral distress amongst nurses in cases of perceived futile care. In this setting, nurses who were older or more experienced in ICU care had increased level of moral distress. Furthermore, Ozden, Karagozoglu, & Yildirim, [6] have found that moral distress due to care futility in turn contributes to nursing burnout, lower job satisfaction, and increased emotional exhaustion. Importantly, perceived futility may not equate with actual futility; perceptions appear to vary based upon discipline. Therefore, it is imperative that all members of the healthcare team are involved in enacting healthcare plans and have the opportunity to voice concerns.
3.1. Limitations It is impossible to convey true status using a brief written scenario. Many of the respondents indicated that they would need more information on baseline function as well as the patients advanced directives, if any to make a decision on course of treatment. Another limitation is that this survey was sent to a broad range of healthcare professionals and not those who specifically specialize in neurological disease. Furthermore, advanced practice providers, which play an increasing role in healthcare, are not represented. Also, those students and practitioners with strong beliefs on care in neurologic illness may have been more likely to respond to this survey, leading to selection bias. The sample for this study was limited due to sample size and convenience sampling.
4. Conclusion Health care professionals consider many factors when confronted with how aggressively to treat patients in various neurological scenarios. Overall the perceived ability of the patient to recover (prognosis/treatability) with medical care was the most commonly cited reason for aggressive measures, with quality of life, medical details, and patient age also representing strong themes across disciplines and level of training.
Please cite this article as: C. Sedney, A. Kurowski-Burt, M. Smith et al., Therapeutic nihilism of neurological diseases: A comparative qualitative study, Journal of Clinical Neuroscience, https://doi.org/10.1016/j.jocn.2019.08.013
C. Sedney et al. / Journal of Clinical Neuroscience xxx (xxxx) xxx
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Appendix A Case 1 An 60-year old female has had Alzheimer’s Dementia for 7 years. She can no longer feed, dress, bathe or toilet herself. She develops pneumonia and is hospitalized. While you are getting her history, you find out from the patient’s daughter that the patient has been coughing after swallowing food and drink.
Case 2 A 60-year old male with a history of diabetes mellitus (DM) is a new patient in your clinic. She also presents with numbness and tingling (neuropathy) in both hands and feet, cataracts bilaterally, high blood pressure, and is overweight. She complains of an open sore on the calf of her right leg, which is also significantly swollen.
Please cite this article as: C. Sedney, A. Kurowski-Burt, M. Smith et al., Therapeutic nihilism of neurological diseases: A comparative qualitative study, Journal of Clinical Neuroscience, https://doi.org/10.1016/j.jocn.2019.08.013
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C. Sedney et al. / Journal of Clinical Neuroscience xxx (xxxx) xxx
Case 3 A 60-year old female brought to emergency department by her daughter was found lying next to her bed paralyzed on the left side, with slurred speech and neglecting her left side of her body. The daughter reports that she is unsure of how long her mother was lying there. After your assessment, it is determined this patient suffered a right middle cerebral artery (MCA) occlusion. This is her 2nd stroke.
Case 4 A 20-year old male is admitted to the Intensive Care Unit (ICU) after a fall from a roof with a fracture-dislocation at C5-C6 (neck region) with obvious damage to the spinal canal as per a CT scan. She has been intubated (tube placement for breathing). While you are evaluating her, she is minimally responsive (responds a little to touch, sounds, etc.) and has no movement of any of her arms or legs.
Please cite this article as: C. Sedney, A. Kurowski-Burt, M. Smith et al., Therapeutic nihilism of neurological diseases: A comparative qualitative study, Journal of Clinical Neuroscience, https://doi.org/10.1016/j.jocn.2019.08.013
C. Sedney et al. / Journal of Clinical Neuroscience xxx (xxxx) xxx
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Case 5 A 20-year old female was found confused in the Kroger’s parking lot. She was taken to the hospital and was found to have weakness in her left arm and leg. She was given an IV (intravenous) clot-busting medication (e.g., tPA) and transferred to your facility for further evaluation. You also determine she has left sided weakness, as well as neglect. While you are evaluating her, she begins to have decreased consciousness.
Case 6 A 60-year old male with a history of steroid use for lung problems presents with decreased movement of both his legs for several days, to the point that he can no longer walk. Workup reveals an infection in his spine, which is compressing his spinal cord and causing the paralysis (decreased use of both legs).
Please cite this article as: C. Sedney, A. Kurowski-Burt, M. Smith et al., Therapeutic nihilism of neurological diseases: A comparative qualitative study, Journal of Clinical Neuroscience, https://doi.org/10.1016/j.jocn.2019.08.013
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Please identify your discipline, rank, and year of training:
Appendix B. Supplementary data Supplementary data to this article can be found online at https://doi.org/10.1016/j.jocn.2019.08.013. References [1] Biller J, Love B. Nihilism and stroke therapy. Stroke 1991;22(9):1105–7. https:// doi.org/10.1161/01.STR.22.9.1105. [2] Brizzi M, Abul-Kasim K, Jalakas M, Selariu E, Pessah-Rasmussen H, Zia E. Early do-not-resuscitate orders in intracerebral haemorrhage; frequency and predictive value for death and functional outcome. A retrospective cohort study. Scand J Trauma Resuscitation Emergency Med 2012;20(36):1–6. https:// doi.org/10.1186/1757-7241-20-360.
[3] Hemphill III JC, White DB. Clinical nihilism in neuro-emergencies. Emergency Med Clinics North Am 2009;27(1):27–37. https://doi.org/10.1016/j. emc.2008.08.009. [4] Mobley MJ, Rady MY, Verheijde JL, Patel B, Larson JS. The relationship between moral distress and perception of futile care in the critical care unit. Intensive Crit Care Nurs 2007;23(5):256–63. https://doi.org/10.1016/j.iccn.2007.03.011. [5] Neville TH, Wiley JF, Holmboe ES, Tseng CH, Vespa P, Kleerup EC, et al. Differences between attendings’ and fellows’ perceptions of futile treatment in the intensive care unit at one academic health center: Implications for training. Acad Med 2015;90(3):324–30. [6] Ozden D, Karagozoglu S, Yildirim G. Intensive care nurses’ perception of futility: Job satisfaction and burnout dimensions. Nursing Ethics 2013;20(4):436–47. https://doi.org/10.1177/0969733012466002. [7] QRS International Pty Ltd (2017). NVivo 11 Pro for Windows (Version 11.4) [Computer software]: QRS International Pty Ltd.
Please cite this article as: C. Sedney, A. Kurowski-Burt, M. Smith et al., Therapeutic nihilism of neurological diseases: A comparative qualitative study, Journal of Clinical Neuroscience, https://doi.org/10.1016/j.jocn.2019.08.013