- Email: [email protected]
Hospice and Palliative Medicine Clinician Views of Deactivation of Ventricular Assist Devices at the End of Life
e6
Letters
findings suggested that a good death might cause positive psychological changes in bereaved caregivers. However, some researchers insist that stress must be severe to generate PTG.2 As well, there are still inconsistencies about the conceptualization of PTG.13 We need longitudinal studies with larger samples to reveal the complex psychological process in bereavement. The following limitations should be mentioned. First, this was a single-site study. Second, the sample size was too small to detect minor effects. Third, the evaluation of patients’ QOL relied on the retrospective method. The recollection of past events may be colored by bereaved caregivers’ current mental states. Fourth, a selection bias has to be considered. We consulted with the primary physicians before sending the questionnaires, and eventually a large number of bereaved caregivers were excluded. Fifth, because of the cross-sectional design, we did not measure the effect of time course of PTG on a bereaved caregiver’s outcomes.4 Yutaka Hatano, MD, PhD Department of Psychiatry Graduate School of Medical Science Kyoto Prefectural University of Medicine Kyoto, Japan E-mail: [email protected] Sawako Fujimoto, CN Toyoshi Hosokawa, MD, PhD Department of Pain Management & Palliative Care Medicine Kyoto Prefectural University of Medicine Kyoto, Japan Kenji Fukui, MD, PhD Department of Psychiatry Graduate School of Medical Science Kyoto Prefectural University of Medicine Kyoto, Japan http://dx.doi.org/10.1016/j.jpainsymman.2015.05.002
References 1. Ferlay J, Soerjomataram I, Ervik M,, et al. GLOBOCAN 2012 v1.0, Cancer Incidence and Mortality Worldwide: IARC CancerBase No. 11 [Internet]. Lyon, France: International Agency for Research on Cancer; 2013. Available at: http:// globocan.iarc.fr. Accessed April 18, 2015. 2. Tedeschi RG, Calhoun LG. The Posttraumatic Growth Inventory: measuring the positive legacy of trauma. J Trauma Stress 1996;9:455e471. 3. Rosenberg AR, Baker KS, Syrjala KL, Back AL, Wolfe J. Promoting resilience among parents and caregivers of children with cancer. J Palliat Med 2013;16:645e652. 4. Kim Y, Carver CS, Schulz R, Lucette A, Cannady RS. Finding benefit in bereavement among family cancer caregivers. J Palliat Med 2013;16:1040e1047. 5. Wong WK, Ussher J, Perz J. Strength through adversity: bereaved cancer carers’ accounts of rewards and personal growth from caring. Palliat Support Care 2009;7:187e196.
Vol. 50 No. 2 August 2015
6. Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008;300:1665e1673. 7. Miyashita M, Morita T, Sato K, et al. Good Death Inventory: a measure for evaluating good death from the bereaved family member’s perspective. J Pain Symptom Manage 2008; 35:486e498. 8. Morita T, Hirai K, Sakaguchi Y, et al. Measuring the quality of structure and process in end-of-life care from the bereaved family perspective. J Pain Symptom Manage 2004; 27:492e501. 9. Taku K, Calhoun LG, Tedeschi RG, et al. Examining posttraumatic growth among Japanese university students. Anxiety Stress Coping 2007;20:353e367. 10. Kitamura T. Hospital anxiety and depression scale. [in Japanese]. Arch Psychiatr Diagn Clin Eval 1993;4:371e372. 11. Asukai N, Kato H, Kawamura N, et al. Reliability and validity of the Japanese-language version of the Impact of Event Scale-Revised (IES-R-J): four studies on different traumatic events. J Nerv Ment Dis 2002;190:175e182. 12. Fukuhara S, Suzukamo Y. Manual of the SF-8 Japanese version. Kyoto: Institute for Health Outcome & Process Evaluation Research, 2004. 13. Zoellner T, Maercker A. Posttraumatic growth in clinical psychology - a critical review and introduction of a two component model. Clin Psychol Rev 2006;26:626e653.
Hospice and Palliative Medicine Clinician Views of Deactivation of Ventricular Assist Devices at the End of Life To the Editor: Left ventricular assist devices (LVADs) provide circulatory support to patients with advanced heart failure. These devices are used as a temporary bridge to recovery, bridge to cardiac transplantation, or as destination therapy (DT)dwhere the patient will have the device in situ for the remainder of his/her life. Compared to medical management alone, LVAD-DT often improves survival and quality of life for patients with severe heart failure.1 However, patients with LVADs may experience a host of challenges including a catastrophic event (e.g., stroke, hemorrhage, infection), a concurrent slow decline in health (e.g., right heart failure), a concurrent life-limiting illness (e.g., malignancy), or progression of other comorbid conditions (e.g., dementia).2 Approximately 30% of patients receiving LVAD-DT will die within two years of implantation.3 Patients approaching death, or their surrogates, may request withdrawal of LVAD support if the therapy is regarded as more burdensome than beneficial.4,5 Carrying out such requests may be a challenge for some clinicians given how rapidly death
Vol. 50 No. 2 August 2015
Letter
often occurs after the device is turned off.6 Others have voiced concerns as to whether it is morally permissible to turn off such a device and not be complicit in causing the patient’s death.7,8 To date, the attitudes and practices of American hospice and palliative medicine (HPM) clinicians regarding the withdrawal of LVADs have not been described.
Methods To describe these attitudes, we surveyed members of the American Academy of Hospice and Palliative Medicine (AAHPM). The survey solicited information regarding clinical practices, experiences, and attitudes of HPM clinicians regarding LVADs at the end of life. During November 2011, a Web-based survey was distributed via electronic mail to AAHPM members. The survey was approved by the AAHPM Strategic Coordinating Council and was deemed exempt by the Mayo Clinic Institutional Review Board. Results were blinded by the Mayo Survey Research Center, and all investigators were blinded to respondent identity. Results were analyzed using descriptive statistics or Fisher’s exact test for categorical variables.
Results In all, 137 practitioners responded; 122 were eligible for the study (i.e., clinicians who were either AAHPM members and/or reported a primary clinical practice in HPM). The estimated response rate was less than 10%. We acknowledge the denominator of respondents from the AAHPM’s member roster and others who received the survey via crowdsourcing made calculating an exact response rate challenging. Respondents were predominantly female (53%), physicians (93%), AAHPM members (95%); had practiced medicine for 11 years or more (69%); and were age 51 years or older (48%). Most respondents (58%) had cared for patients nearing death who requested LVAD deactivation. Of those, 96% had assisted with the process of LVAD deactivation, and only two (3%) reported declining a request. HPM providers who had not cared for such patients viewed the LVAD as a life-sustaining treatment, reporting comfort with ordering LVAD deactivation (83%) and personally turning off the LVAD if needed (61%). Seventy-two percent of provider did not believe a patient had to be ‘‘dying’’ to turn off an LVAD. Fortythree percent believed a physician should be present at LVAD deactivation, and 39% believed that HPM providers should be responsible for LVAD deactivation for their hospice patients. No respondents believed that turning off an LVAD is akin to euthanasia or physician aid-in-dying, and only 29% and 27% believed patients
e7
should sometimes undergo psychiatry or ethics consultation before LVAD deactivation (but none reported ‘‘always’’). For patients not nearing death, respondents reported requests to turn off LVADs should ‘‘always’’ (27%) and ‘‘sometimes’’ (62%) be respected. The perception of legal risk associated with turning off an LVAD was ‘‘none-to-low’’ for 80% of HPM respondents.
Comment To our knowledge, this is the first description of the experience and opinions of American HPM clinicians dealing with LVAD deactivation at the end of life. Recently, the attitudes of North American and European cardiologists were published,9 and differences between those two groups and differences between these data from HPM clinicians are intriguing. Although both the HPM and cardiology clinician groups believe that an LVAD is a life-sustaining treatment, the data herein suggest that 1) HPM physicians widely support the belief that the cause of death following LVAD deactivation is the patient’s underlying disease, 2) legal liability for turning off an LVAD in patients who request it is low, and 3) HPM clinicians generally support patient autonomy and the right to refuse life-sustaining treatment. However, the cardiology group (in particular the European subgroup) noted 1) lower levels of comfort with deactivating a device (26%), 2) high rates of refusing to deactivate an LVAD (17%), and 3) greater concern that turning off an LVAD was paramount to euthanasia or physician aid-in-dying.9 These findings were not observed in the AAHPM cohort, where respondents overwhelming support the ethicality of LVAD deactivation for patients when the device no longer allows them to achieve their goals of care. This is distinctly different than previous surveys of cardiologists, who report higher rates of moral opposition and concerns regarding criminal liability for physician-aided death (particularly European clinicians).9 There are notable limitations to this study. Overall the response rate was low (<10%), so there is the possibility of selection bias, with those who opted to complete the study having certain beliefs or characteristics. The comparisons to the previous study of North American and European cardiologists is descriptive only, and the low response rates in both groups, as well as the number of respondents overall, may limit our ability to detect a meaningful difference. Thus, these findings must be taken with caution. In summary, this is the first study of the attitudes of American HPM clinicians surrounding LVAD deactivation in patients nearing death. HPM clinicians generally support mainstream and consensus views that it is morally, ethically, and legally permissible to withhold
e8
Letters
or withdraw life-sustaining treatments (including LVADs) if they do not help patients to meet their goals of care. However, HPM clinicians should be aware of differing viewpoints among clinicians and should promote dialogue, education, practice guideline development, and clinical and psychosocial support for clinicians who work with patients facing the end of life with an LVAD. Keith M. Swetz, MD, MA Division of General Internal Medicine Department of Medicine Mayo Clinic Rochester, Minnesota, USA E-mail: [email protected] Sara E. Wordingham, MD Division of Hematology and Oncology Department of Medicine Mayo Clinic Scottsdale, Arizona, USA Matthew H. Armstrong, MD, MA Department of Anesthesiology Mayo Clinic Rochester, Minnesota, USA Katlyn E. Koepp, BS Division of General Internal Medicine Department of Medicine Program in Professionalism and Ethics Mayo Clinic Rochester, Minnesota, USA Abigale L. Ottenberg, MA Program in Professionalism and Ethics Mayo Clinic Rochester, Minnesota, USA http://dx.doi.org/10.1016/j.jpainsymman.2015.05.005
Disclosures and Acknowledgments The authors thank the members of AAHPM who completed the survey and encouraged others to do
Vol. 50 No. 2 August 2015
so, as well as recognizing Ms. Nou Chang Her for her assistance with IRB issues, and Dr. Paul S. Mueller for his help with review of the survey and initial insights regarding this project.
References 1. Slaughter MS, Rogers JG, Milano CA, et al. Advanced heart failure treated with continuous-flow left ventricular assist device. N Engl J Med 2009;361: 2241e2251. 2. Swetz KM, Freeman MR, AbouEzzeddine OF, et al. Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy. Mayo Clin Proc 2011;86: 493e500. 3. Kirklin JK, Naftel DC, Pagani FD, et al. Sixth INTERMACS annual report: a 10,000-patient database. J Heart Lung Transplant 2014;33:555e564. 4. Mueller P, Swetz K, Freeman M, et al. Ethical analysis of withdrawing ventricular assist device support. Mayo Clin Proc 2010;85:791e797. 5. Pellegrino ED. Decisions to withdraw life-sustaining treatment: a moral algorithm. JAMA 2000;283:1065e1067. 6. Jansen LA. Hastening death and the boundaries of the self. Bioethics 2006;20:105e111. 7. Rady MY, Verheijde JL. Ethical challenges with deactivation of durable mechanical circulatory support at the end of life: left ventricular assist devices and total artificial hearts. J Intensive Care Med 2014;29:3e12. 8. Simon JR. Case study. ‘‘Doctor, will you turn off my LVAD?’’ Commentary. Hastings Cent Rep 2008;38:14e15. 9. Swetz KM, Cook KE, Ottenberg AL, Chang N, Mueller PS. Clinicians’ attitudes regarding withdrawal of left ventricular assist devices in patients approaching the end of life. Eur J Heart Fail 2013;15:1262e1266.
Letters
findings suggested that a good death might cause positive psychological changes in bereaved caregivers. However, some researchers insist that stress must be severe to generate PTG.2 As well, there are still inconsistencies about the conceptualization of PTG.13 We need longitudinal studies with larger samples to reveal the complex psychological process in bereavement. The following limitations should be mentioned. First, this was a single-site study. Second, the sample size was too small to detect minor effects. Third, the evaluation of patients’ QOL relied on the retrospective method. The recollection of past events may be colored by bereaved caregivers’ current mental states. Fourth, a selection bias has to be considered. We consulted with the primary physicians before sending the questionnaires, and eventually a large number of bereaved caregivers were excluded. Fifth, because of the cross-sectional design, we did not measure the effect of time course of PTG on a bereaved caregiver’s outcomes.4 Yutaka Hatano, MD, PhD Department of Psychiatry Graduate School of Medical Science Kyoto Prefectural University of Medicine Kyoto, Japan E-mail: [email protected] Sawako Fujimoto, CN Toyoshi Hosokawa, MD, PhD Department of Pain Management & Palliative Care Medicine Kyoto Prefectural University of Medicine Kyoto, Japan Kenji Fukui, MD, PhD Department of Psychiatry Graduate School of Medical Science Kyoto Prefectural University of Medicine Kyoto, Japan http://dx.doi.org/10.1016/j.jpainsymman.2015.05.002
References 1. Ferlay J, Soerjomataram I, Ervik M,, et al. GLOBOCAN 2012 v1.0, Cancer Incidence and Mortality Worldwide: IARC CancerBase No. 11 [Internet]. Lyon, France: International Agency for Research on Cancer; 2013. Available at: http:// globocan.iarc.fr. Accessed April 18, 2015. 2. Tedeschi RG, Calhoun LG. The Posttraumatic Growth Inventory: measuring the positive legacy of trauma. J Trauma Stress 1996;9:455e471. 3. Rosenberg AR, Baker KS, Syrjala KL, Back AL, Wolfe J. Promoting resilience among parents and caregivers of children with cancer. J Palliat Med 2013;16:645e652. 4. Kim Y, Carver CS, Schulz R, Lucette A, Cannady RS. Finding benefit in bereavement among family cancer caregivers. J Palliat Med 2013;16:1040e1047. 5. Wong WK, Ussher J, Perz J. Strength through adversity: bereaved cancer carers’ accounts of rewards and personal growth from caring. Palliat Support Care 2009;7:187e196.
Vol. 50 No. 2 August 2015
6. Wright AA, Zhang B, Ray A, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 2008;300:1665e1673. 7. Miyashita M, Morita T, Sato K, et al. Good Death Inventory: a measure for evaluating good death from the bereaved family member’s perspective. J Pain Symptom Manage 2008; 35:486e498. 8. Morita T, Hirai K, Sakaguchi Y, et al. Measuring the quality of structure and process in end-of-life care from the bereaved family perspective. J Pain Symptom Manage 2004; 27:492e501. 9. Taku K, Calhoun LG, Tedeschi RG, et al. Examining posttraumatic growth among Japanese university students. Anxiety Stress Coping 2007;20:353e367. 10. Kitamura T. Hospital anxiety and depression scale. [in Japanese]. Arch Psychiatr Diagn Clin Eval 1993;4:371e372. 11. Asukai N, Kato H, Kawamura N, et al. Reliability and validity of the Japanese-language version of the Impact of Event Scale-Revised (IES-R-J): four studies on different traumatic events. J Nerv Ment Dis 2002;190:175e182. 12. Fukuhara S, Suzukamo Y. Manual of the SF-8 Japanese version. Kyoto: Institute for Health Outcome & Process Evaluation Research, 2004. 13. Zoellner T, Maercker A. Posttraumatic growth in clinical psychology - a critical review and introduction of a two component model. Clin Psychol Rev 2006;26:626e653.
Hospice and Palliative Medicine Clinician Views of Deactivation of Ventricular Assist Devices at the End of Life To the Editor: Left ventricular assist devices (LVADs) provide circulatory support to patients with advanced heart failure. These devices are used as a temporary bridge to recovery, bridge to cardiac transplantation, or as destination therapy (DT)dwhere the patient will have the device in situ for the remainder of his/her life. Compared to medical management alone, LVAD-DT often improves survival and quality of life for patients with severe heart failure.1 However, patients with LVADs may experience a host of challenges including a catastrophic event (e.g., stroke, hemorrhage, infection), a concurrent slow decline in health (e.g., right heart failure), a concurrent life-limiting illness (e.g., malignancy), or progression of other comorbid conditions (e.g., dementia).2 Approximately 30% of patients receiving LVAD-DT will die within two years of implantation.3 Patients approaching death, or their surrogates, may request withdrawal of LVAD support if the therapy is regarded as more burdensome than beneficial.4,5 Carrying out such requests may be a challenge for some clinicians given how rapidly death
Vol. 50 No. 2 August 2015
Letter
often occurs after the device is turned off.6 Others have voiced concerns as to whether it is morally permissible to turn off such a device and not be complicit in causing the patient’s death.7,8 To date, the attitudes and practices of American hospice and palliative medicine (HPM) clinicians regarding the withdrawal of LVADs have not been described.
Methods To describe these attitudes, we surveyed members of the American Academy of Hospice and Palliative Medicine (AAHPM). The survey solicited information regarding clinical practices, experiences, and attitudes of HPM clinicians regarding LVADs at the end of life. During November 2011, a Web-based survey was distributed via electronic mail to AAHPM members. The survey was approved by the AAHPM Strategic Coordinating Council and was deemed exempt by the Mayo Clinic Institutional Review Board. Results were blinded by the Mayo Survey Research Center, and all investigators were blinded to respondent identity. Results were analyzed using descriptive statistics or Fisher’s exact test for categorical variables.
Results In all, 137 practitioners responded; 122 were eligible for the study (i.e., clinicians who were either AAHPM members and/or reported a primary clinical practice in HPM). The estimated response rate was less than 10%. We acknowledge the denominator of respondents from the AAHPM’s member roster and others who received the survey via crowdsourcing made calculating an exact response rate challenging. Respondents were predominantly female (53%), physicians (93%), AAHPM members (95%); had practiced medicine for 11 years or more (69%); and were age 51 years or older (48%). Most respondents (58%) had cared for patients nearing death who requested LVAD deactivation. Of those, 96% had assisted with the process of LVAD deactivation, and only two (3%) reported declining a request. HPM providers who had not cared for such patients viewed the LVAD as a life-sustaining treatment, reporting comfort with ordering LVAD deactivation (83%) and personally turning off the LVAD if needed (61%). Seventy-two percent of provider did not believe a patient had to be ‘‘dying’’ to turn off an LVAD. Fortythree percent believed a physician should be present at LVAD deactivation, and 39% believed that HPM providers should be responsible for LVAD deactivation for their hospice patients. No respondents believed that turning off an LVAD is akin to euthanasia or physician aid-in-dying, and only 29% and 27% believed patients
e7
should sometimes undergo psychiatry or ethics consultation before LVAD deactivation (but none reported ‘‘always’’). For patients not nearing death, respondents reported requests to turn off LVADs should ‘‘always’’ (27%) and ‘‘sometimes’’ (62%) be respected. The perception of legal risk associated with turning off an LVAD was ‘‘none-to-low’’ for 80% of HPM respondents.
Comment To our knowledge, this is the first description of the experience and opinions of American HPM clinicians dealing with LVAD deactivation at the end of life. Recently, the attitudes of North American and European cardiologists were published,9 and differences between those two groups and differences between these data from HPM clinicians are intriguing. Although both the HPM and cardiology clinician groups believe that an LVAD is a life-sustaining treatment, the data herein suggest that 1) HPM physicians widely support the belief that the cause of death following LVAD deactivation is the patient’s underlying disease, 2) legal liability for turning off an LVAD in patients who request it is low, and 3) HPM clinicians generally support patient autonomy and the right to refuse life-sustaining treatment. However, the cardiology group (in particular the European subgroup) noted 1) lower levels of comfort with deactivating a device (26%), 2) high rates of refusing to deactivate an LVAD (17%), and 3) greater concern that turning off an LVAD was paramount to euthanasia or physician aid-in-dying.9 These findings were not observed in the AAHPM cohort, where respondents overwhelming support the ethicality of LVAD deactivation for patients when the device no longer allows them to achieve their goals of care. This is distinctly different than previous surveys of cardiologists, who report higher rates of moral opposition and concerns regarding criminal liability for physician-aided death (particularly European clinicians).9 There are notable limitations to this study. Overall the response rate was low (<10%), so there is the possibility of selection bias, with those who opted to complete the study having certain beliefs or characteristics. The comparisons to the previous study of North American and European cardiologists is descriptive only, and the low response rates in both groups, as well as the number of respondents overall, may limit our ability to detect a meaningful difference. Thus, these findings must be taken with caution. In summary, this is the first study of the attitudes of American HPM clinicians surrounding LVAD deactivation in patients nearing death. HPM clinicians generally support mainstream and consensus views that it is morally, ethically, and legally permissible to withhold
e8
Letters
or withdraw life-sustaining treatments (including LVADs) if they do not help patients to meet their goals of care. However, HPM clinicians should be aware of differing viewpoints among clinicians and should promote dialogue, education, practice guideline development, and clinical and psychosocial support for clinicians who work with patients facing the end of life with an LVAD. Keith M. Swetz, MD, MA Division of General Internal Medicine Department of Medicine Mayo Clinic Rochester, Minnesota, USA E-mail: [email protected] Sara E. Wordingham, MD Division of Hematology and Oncology Department of Medicine Mayo Clinic Scottsdale, Arizona, USA Matthew H. Armstrong, MD, MA Department of Anesthesiology Mayo Clinic Rochester, Minnesota, USA Katlyn E. Koepp, BS Division of General Internal Medicine Department of Medicine Program in Professionalism and Ethics Mayo Clinic Rochester, Minnesota, USA Abigale L. Ottenberg, MA Program in Professionalism and Ethics Mayo Clinic Rochester, Minnesota, USA http://dx.doi.org/10.1016/j.jpainsymman.2015.05.005
Disclosures and Acknowledgments The authors thank the members of AAHPM who completed the survey and encouraged others to do
Vol. 50 No. 2 August 2015
so, as well as recognizing Ms. Nou Chang Her for her assistance with IRB issues, and Dr. Paul S. Mueller for his help with review of the survey and initial insights regarding this project.
References 1. Slaughter MS, Rogers JG, Milano CA, et al. Advanced heart failure treated with continuous-flow left ventricular assist device. N Engl J Med 2009;361: 2241e2251. 2. Swetz KM, Freeman MR, AbouEzzeddine OF, et al. Palliative medicine consultation for preparedness planning in patients receiving left ventricular assist devices as destination therapy. Mayo Clin Proc 2011;86: 493e500. 3. Kirklin JK, Naftel DC, Pagani FD, et al. Sixth INTERMACS annual report: a 10,000-patient database. J Heart Lung Transplant 2014;33:555e564. 4. Mueller P, Swetz K, Freeman M, et al. Ethical analysis of withdrawing ventricular assist device support. Mayo Clin Proc 2010;85:791e797. 5. Pellegrino ED. Decisions to withdraw life-sustaining treatment: a moral algorithm. JAMA 2000;283:1065e1067. 6. Jansen LA. Hastening death and the boundaries of the self. Bioethics 2006;20:105e111. 7. Rady MY, Verheijde JL. Ethical challenges with deactivation of durable mechanical circulatory support at the end of life: left ventricular assist devices and total artificial hearts. J Intensive Care Med 2014;29:3e12. 8. Simon JR. Case study. ‘‘Doctor, will you turn off my LVAD?’’ Commentary. Hastings Cent Rep 2008;38:14e15. 9. Swetz KM, Cook KE, Ottenberg AL, Chang N, Mueller PS. Clinicians’ attitudes regarding withdrawal of left ventricular assist devices in patients approaching the end of life. Eur J Heart Fail 2013;15:1262e1266.