Grief Connects Us

by Joseph D. Stern

  Sato, A, J Ooi, S. Takahashi, N. Tsukada, S. Kato, T. Kawakita, T. Yagyu, F. Nagamura, T. Iseki, A. Tojo, et al. “Unrelated Cord Blood Transplantation after Myeloablative Conditioning in Adults with Advanced Myelodysplastic Syndromes.” Bone Marrow Transplantation 46, no. 2 (2010): 257–61. https://doi.org/10.1038/bmt.2010.91.

  CHAPTER FIVE: TRANSPLANT/SECOND VISIT

  This avoidance applies both to patients and their doctors:

  Baszanger, Isabelle. “One More Chemo or One Too Many? Defining the Limits of Treatment and Innovation in Medical Oncology.” Social Science & Medicine 75, no. 5 (2012): 864–72.

  See also: Fattoum, Jihane, Giovanna Cannas, Mohamed Elhamri, Isabelle Tigaud, Adriana Plesa, Maël Heiblig, Claudiu Plesa, Eric Wattel, and Xavier Thomas. “Effect of Age on Treatment Decision-Making in Elderly Patients with Acute Myeloid Leukemia.” Clinical Lymphoma Myeloma and Leukemia 15, no. 8 (2015): 477–83.

  Leblanc, Thomas W., Laura J. Fish, Catherine T. Bloom, Areej El-Jawahri, Debra M. Davis, Susan C. Locke, Karen E. Steinhauser, and Kathryn I. Pollak. “Patient Experiences of Acute Myeloid Leukemia: A Qualitative Study about Diagnosis, Illness Understanding, and Treatment Decision-Making.” Psycho-Oncology 26, no. 12 (2016): 2063–68.

  Magarotto, Roberto, Gianluigi Lunardi, Francesca Coati, Paola Cassandrini, Vincenzo Picece, Silvia Ferrighi, Luciana Oliosi, and Marco Venturini. “Reduced Use of Chemotherapy at the End of Life in an Integrated-Care Model of Oncology and Palliative Care. Tumori, 97, no. 5 (2011): 573–77.

  ADDITIONAL SOURCES

  Baccarani, M., F. Efficace, and G. Rosti. “Moving towards Patient-Centered Decision-Making in Chronic Myeloid Leukemia: Assessment of Quality of Life and Symptom Burden.” Haematologica 99, no. 2 (2014): 205–08. https://doi.org/10.3324/haematol.2013.094045.

  Baszanger, Isabelle. “One More Chemo or One Too Many? Defining the Limits of Treatment and Innovation in Medical Oncology.” Social Science & Medicine 75, no. 5 (2012): 864–72. https://doi.org/10.1016/j.socscimed.2012.03.023.

  Chambaere, Kenneth, Johan Bilsen, Joachim Cohen, Geert Pousset, Bregje Onwuteaka-Philipsen, Freddy Mortier, and Luc Deliens. “A Post-Mortem Survey on End-of-Life Decisions Using a Representative Sample of Death Certificates in Flanders, Belgium: Research Protocol.” BMC Public Health 8, no. 1 (2008). https://doi.org/10.1186/1471-2458-8-299.

  Chambaere, Kenneth, Judith Ac Rietjens, Joachim Cohen, Koen Pardon, Reginald Deschepper, H. Roeline, W. Pasman, and Luc Deliens. “Is Educational Attainment Related to End-of-Life Decision-Making? A Large Post-Mortem Survey in Belgium.” BMC Public Health 13, no. 1 (2013). https://doi.org/10.1186/1471-2458-13-1055.

  Deschler, B., T. de Witte, R. Mertelsmann, and M. Lübbert. “Treatment Decision-Making for Older Patients with High-Risk Myelodysplastic Syndrome or Acute Myeloid Leukemia: Problems and Approaches.” Haematologica, 91, no. 11 (2006): 1513–22.

  Efficace, Fabio, Georg Kemmler, Marco Vignetti, Franco Mandelli, Stefano Molica, and Bernhard Holzner. “Health-Related Quality of Life Assessment and Reported Outcomes in Leukaemia Randomised Controlled Trials—A Systematic Review to Evaluate the Added Value in Supporting Clinical Decision Making.” European Journal of Cancer 44, no. 11 (2008): 1497–1506. https://doi.org/10.1016/j.ejca.2008.03.017.

  Fattoum, Jihane, Giovanna Cannas, Mohamed Elhamri, Isabelle Tigaud, Adriana Plesa, Maël Heiblig, Claudiu Plesa, Eric Wattel, and Xavier Thomas. “Effect of Age on Treatment Decision-Making in Elderly Patients with Acute Myeloid Leukemia.” Clinical Lymphoma Myeloma and Leukemia 15, no. 8 (2015): 477–83. https://doi.org/10.1016/j.clml.2015.02.022.

  Fins, Joseph J. and Mildred Z. Solomon. “Communication in Intensive Care Settings: The Challenge of Futility Disputes.” Critical Care Medicine 29, no. Supplement (2001). https://doi.org/10.1097/00003246-200102001-00003.

  Jones, James W. and Laurence B. Mccullough. “Extending Life or Prolonging Death: When Is Enough Actually Too Much?” Journal of Vascular Surgery 60, no. 2 (2014): 521–22. https://doi.org/10.1016/j.jvs.2014.05.054.

  Jukic, Marko. “Medical Futility Treatment in Intensive Care Units.” Acta Medica Academica 45, no. 2 (2016): 127–36. https://doi.org/10.5644/ama2006-124.169.

  Lancet, The. “Balancing the Benefits and Risks of Choice.” The Lancet 388, no. 10050 (2016): 1129. https://doi.org/10.1016/s0140-6736(16)31641-5.

  Leblanc, Thomas W., Laura J. Fish, Catherine T. Bloom, Areej El-Jawahri, Debra M. Davis, Susan C. Locke, Karen E. Steinhauser, and Kathryn I. Pollak. “Patient Experiences of Acute Myeloid Leukemia: A Qualitative Study about Diagnosis, Illness Understanding, and Treatment Decision-Making.” Psycho-Oncology 26, no. 12 (2016): 2063–68. https://doi.org/10.1002/pon.4309.

  Magarotto, Roberto, Gianluigi Lunardi, Francesca Coati, Paola Cassandrini, Vincenzo Picece, Silvia Ferrighi, Luciana Oliosi, and Marco Venturini. “Reduced Use of Chemotherapy at the End of Life in an Integrated-Care Model of Oncology and Palliative Care. Tumori, 97, no. 5 (2011): 573–77. https://doi.org/10.1700/989.10714.

  Miller, Kimberly D., Rebecca L. Siegel, Chun Chieh Lin, Angela B. Mariotto, Joan L. Kramer, Julia H. Rowland, Kevin D. Stein, Rick Alteri, and Ahmedin Jemal. “Cancer Treatment and Survivorship Statistics, 2016.” CA: A Cancer Journal for Clinicians 66, no. 4 (2016): 271–89. https://doi.org/10.3322/caac.21349.

  Myers, G. “Over-Medicalized Care at the End-of-Life in the United States.” Turn-Key Health. December 2016. http://turn-keyhealth.com/wp-content/uploads/2016/12/Over-Medicalized-Care-at-the-End-of-Life-in-the-US.pdf.

  Pardon, Koen, Kenneth Chambaere, H. Roeline W. Pasman, Reginald Deschepper, Judith Rietjens, and Luc Deliens. “Trends in End-of-Life Decision Making in Patients with and without Cancer.” Journal of Clinical Oncology 31, no. 11 (2013): 1450–57. https://doi.org/10.1200/jco.2012.44.5916.

  Rood, Janneke A. J., Florence J. Van Zuuren, Frank Stam, Tjeerd Van Der Ploeg, Corien Eeltink, Irma M. Verdonck-De Leeuw, and Peter C. Huijgens. “Perceived Need for Information among Patients with a Haematological Malignancy: Associations with Information Satisfaction and Treatment Decision-Making Preferences.” Hematological Oncology 33, no. 2 (2014): 85–98. https://doi.org/10.1002/hon.2138.

  Smith, Martin L. “Should Possible Disparities and Distrust Trump Do-No-Harm?” The American Journal of Bioethics 6, no. 5 (2006): 28–30. https://doi.org/10.1080/15265160600860860.

  Solomon, M. Z., L. O’donnell, B. Jennings, V. Guilfoy, S. M. Wolf, K. Nolan, R. Jackson, D. Koch-Weser, and S. Donnelley. “Decisions near the End of Life: Professional Views on Life-Sustaining Treatments.” American Journal of Public Health 83, no. 1 (1993): 14–23. https://doi.org/10.2105/ajph.83.1.14.

  Waldrop, D. P., and M. A. Meeker. “Hospice Decision Making: Diagnosis Makes a Difference.” The Gerontologist 52, no. 5 (2012): 686–97. https://doi.org/10.1093/geront/gnr160.

  Wojtasiewicz, Mary Ellen. “Damage Compounded: Disparities, Distrust, and Disparate Impact in End-of-Life Conflict Resolution Policies.” The American Journal of Bioethics 6, no. 5 (2006): 8–12. https://doi.org/10.1080/15265160600856801.

  CHAPTER SIX: LEUKEMIA RETURNS

  “Acute myeloid leukemia (AML).” DynaMed. 2016. http://search.ebscohost.com/login.aspx?direct=true&db=dnh&AN=114798&site=dynamed-live&scope=site. Registration and login required.

  “Acute Myeloid Leukemia—Cancer Stat Facts.” National Cancer Institute. 2012. https://seer.cancer.gov/statfacts/html/amyl.html.

  Alatrash, Gheath, Matteo Pelosini, Rima M. Saliba, Ebru Koca, Gabriela Rondon, Borje S. Andersson, Alexandre Chiattone, Weiqing Zhang, Sergio A. Giralt, and Amanda M. Cernosek. “Platelet Recovery Before Allogeneic Stem Cell Transplantation Predicts Posttransplantation Outcomes in Patients with Acute Myelogenous Leukemia and Myelodysplastic Syndrome.” Biology of Blood and Marrow Transplantation 17, no. 12 (2011): 1841–45. https://doi.org/10.1016/j.bbmt.2011.05.018.

  Chang, Hui-Yen, Victorio Rodriguez, Gino Narboni, Gerald P. Bodey, Mario A. Luna, and Emil J. Freireich. “Causes of Death in Adults with Acute Leukemia.” Medicine 55, no.
3 (1976): 259–68. https://doi.org/10.1097/00005792-197605000-00005.

  Ferrara, Felicetto and Charles A Schiffer. “Acute Myeloid Leukaemia in Adults.” The Lancet 381, no. 9865 (2013): 484–95. https://doi.org/10.1016/s0140-6736(12)61727-9.

  Fey, M.F and C. Buske. “Acute Myeloblastic Leukaemias in Adult Patients: ESMO Clinical Practice Guidelines for Diagnosis, Treatment and Follow-Up.” Annals of Oncology 24 (2013): vi138–vi143. https://doi.org/10.1093/annonc/mdt320.

  Huck, Amelia, Olga Pozdnyakova, Andrew Brunner, John M. Higgins, Amir T. Fathi, and Robert P. Hasserjian. “Prior Cytopenia Predicts Worse Clinical Outcome in Acute Myeloid Leukemia.” Leukemia Research 39, no. 10 (2015): 1034–40. https://doi.org/10.1016/j.leukres.2015.06.012.

  Lai, Xin and Kelvin K. W. Yau. “Long-Term Survivor Model with Bivariate Random Effects: Applications to Bone Marrow Transplant and Carcinoma Study Data.” Statistics in Medicine 27, no. 27 (2008): 5692–08. https://doi.org/10.1002/sim.3404.

  Milligan, D. W., D. Grimwade, J. O. Cullis, L. Bond, D. Swirsky, C. Craddock, J. Kell, J. Homewood, K. Campbell, and S. Mcginley. “Guidelines on the Management of Acute Myeloid Leukaemia in Adults.” British Journal of Haematology 135, no. 4 (2006): 450–74. https://doi.org/10.1111/j.1365-2141.2006.06314.x.

  O’Donnell, M. R., M. S Tallman, C. N. Abboud, J. Altman, F.R. Appelbaum, V. Bhatt, et al. “NCCN guidelines version 1.2017 acute myeloid leukemia.” February 2007. https://www.nccn.org/professionals/physician_gls/f_guidelines.asp.

  Saliba, R. M., K. V. Komanduri, S. Giralt, J. De Souza, P. Patah, B. Oran, D. Couriel, G. Rondon, R. E. Champlin, and M. De Lima. “Leukemia Burden Delays Lymphocyte and Platelet Recovery after Allo-SCT for AML.” Bone Marrow Transplantation 43, no. 9 (2008): 685–92. https://doi.org/10.1038/bmt.2008.376.

  Siegel, Bernie S. A Book of Miracles: Inspiring True Stories of Healing, Gratitude, and Love. Novato, California: New World Library, 2011.

  Siegel, Bernie S. Love, Medicine and Miracles. London: Arrow, 1988.

  Tallman, Martin S., Waleska S. Pérez, Hillard M. Lazarus, Robert Peter Gale, Richard T. Maziarz, Jacob M. Rowe, David I. Marks, Jean-Yves Cahn, Asad Bashey, and Michael R. Bishop. “Pretransplantation Consolidation Chemotherapy Decreases Leukemia Relapse after Autologous Blood and Bone Marrow Transplants for Acute Myelogenous Leukemia in First Remission.” Biology of Blood and Marrow Transplantation 12, no. 2 (2006): 204–16. https://doi.org/10.1016/j.bbmt.2005.10.013.

  Trafalis, Dimitrios, Elias Poulakidas, Violeta Kapsimali, Christos Tsigris, Xenofon Papanicolaou, Nikolaos Harhalakis, Emmanuel Nikiforakis, and Chrisanthi Mentzikof-Mitsouli. “Platelet Production and Related Pathophysiology in Acute Myelogenous Leukemia at First Diagnosis: Prognostic Implications.” Oncology Reports, 2008. https://doi.org/10.3892/or.19.4.1021.

  IN MEMORIAM

  Four percent three-year survival after early relapse:

  Bejanyan, Nelli, Daniel J. Weisdorf, Brent R. Logan, Hai-Lin Wang, Steven M. Devine, Marcos De Lima, Donald W. Bunjes, and Mei-Jie Zhang. “Survival of Patients with Acute Myeloid Leukemia Relapsing after Allogeneic Hematopoietic Cell Transplantation: A Center for International Blood and Marrow Transplant Research Study.” Biology of Blood and Marrow Transplantation 21, no. 3 (2015): 454–59. https://doi.org/10.1016/j.bbmt.2014.11.007.

  One of the great cancer success stories:

  Hunger, Stephen P., Xiaomin Lu, Meenakshi Devidas, Bruce M. Camitta, Paul S. Gaynon, Naomi J. Winick, Gregory H. Reaman, and William L. Carroll. “Improved Survival for Children and Adolescents with Acute Lymphoblastic Leukemia Between 1990 and 2005: A Report from the Children’s Oncology Group.” Journal of Clinical Oncology 30, no. 14 (2012): 1663–69. https://doi.org/10.1200/jco.2011.37.8018.

  ADDITIONAL SOURCES

  “Cancer immunotherapy.” MedlinePlus. Accessed March 21, 2017. https://medlineplus.gov/cancerimmunotherapy.html.

  Chang, Wen-Pei and Chia-Chin Lin. “Correlation between Rest-Activity Rhythm and Survival in Cancer Patients Experiencing Pain.” Chronobiology International 31, no. 8 (2014): 926–34. https://doi.org/10.3109/07420528.2014.931412.

  Devlin, Ann Sloan, and Allison B. Arneill. “Health Care Environments and Patient Outcomes.” Environment and Behavior 35, no. 5 (2003): 665–94. https://doi.org/10.1177/0013916503255102.

  “Facts 2014–2015.” Leukemia and Lymphoma Society. 2015. https://www.lls.org/sites/default/files/file_assets/facts.pdf.

  “Fatigue.” National Cancer Institute. January 13, 2017. https://www.cancer.gov/about-cancer/treatment/side-effects/fatigue/fatigue-hp-pdq.

  Fouladiun, M., U. Korner, L. Gunnebo, P. Sixt-Ammilon, I. Bosaeus, and K. Lundholm. “Daily Physical-Rest Activities in Relation to Nutritional State, Metabolism, and Quality of Life in Cancer Patients with Progressive Cachexia.” Clinical Cancer Research 13, no. 21 (2007): 6379–85. https://doi.org/10.1158/1078-0432.ccr-07-1147.

  Huisman, E.R.C.M., E. Morales, J. Van Hoof, and H.S.M. Kort. “Healing Environment: A Review of the Impact of Physical Environmental Factors on Users.” Building and Environment 58 (2012): 70–80. https://doi.org/10.1016/j.buildenv.2012.06.016.

  Hunger, Stephen P., Xiaomin Lu, Meenakshi Devidas, Bruce M. Camitta, Paul S. Gaynon, Naomi J. Winick, Gregory H. Reaman, and William L. Carroll. “Improved Survival for Children and Adolescents with Acute Lymphoblastic Leukemia Between 1990 and 2005: A Report from the Children’s Oncology Group.” Journal of Clinical Oncology 30, no. 14 (2012): 1663–69. https://doi.org/10.1200/jco.2011.37.8018.

  “Immunotherapy.” National Cancer Institute. Accessed March 21, 2017. https://www.cancer.gov/about-cancer/treatment/types/immunotherapy.

  Miaskowski, Christine, Kathryn Lee, Laura Dunn, Marylin Dodd, Bradley E. Aouizerat, Claudia West, Steven M. Paul, Bruce Cooper, William Wara, and Patrick Swift. “Sleep-Wake Circadian Activity Rhythm Parameters and Fatigue in Oncology Patients Before the Initiation of Radiation Therapy.” Cancer Nursing 34, no. 4 (2011): 255–68. https://doi.org/10.1097/ncc.0b013e3181f65d9b.

  Snook, A. E. and S. A. Waldman. Advances in cancer immunotherapy. Discovery, 15, no. 81 (2013): 120–25.

  part three

  CHAPTER EIGHT: DOCTORS SPEAK

  Disengagement, substance abuse, early retirement, or burnout:

  Drummond, Dike. Stop Physician Burnout: What to Do When Working Harder Isn’t Working. Heritage Press Publications, 2014.

  See also Peckham, C. “Medscape Lifestyle Report 2017: Race and Ethnicity, Bias and Burnout” (2017) 1–28. Accessed at http://www.medscape.com/features/slideshow/lifestyle/2017/overview.

  CHAPTER NINE: PATIENTS SPEAK

  Decrease blood pressure and induce relaxation in patients:

  Mitrione, Stephen. (2008). “Therapeutic Responses to Natural Environments: Using Gardens to Improve Health Care.” Minnesota Medicine, 91, no. 3 (2008): 31–34.

  A view of a brick wall:

  Ulrich, Roger S. (2002). “Health Benefits of Gardens in Hospitals.” Citeseer. In paper for conference. Plants for People International Exhibition Floriade, 17, p. 2010. Citeseer. http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.541.4830&rep=repi&type=pdf.

  Derive substantial benefit:

  Franklin, D. (2012). “Nature that nurtures.” Scientific American, 306, no. 3 (2012): 24–25.

  For our mental and physical health:

  Reynolds, G. “How walking in nature changes the brain,” New York Times, July 22, 2015. https://well.blogs.nytimes.com/2015/07/22/how-nature-changes-the-brain/.

  Exposure to nature decreases depression:

  Schweitzer, Marc, Laura Gilpin, and Susan Frampton. “Healing Spaces: Elements of Environmental Design That Make an Impact on Health.” The Journal of Alternative and Complementary Medicine 10, no. 1 (2004): 71–83.

  See also Tamjidi, Z., A. Hajian, and B. Ghafourian. (2016). “Healing Garden: Study of the Therapeutic Effects of the Natural Environment in Pediatric Hospital.” Journal of Current Research in Science; Tabriz, 4, no. 3 (2016): 152–59.

  Exposure to urban environmen
ts:

  Bratman, Gregory N., J. Paul Hamilton, Kevin S. Hahn, Gretchen C. Daily, and James J. Gross. “Nature Experience Reduces Rumination and Subgenual Prefrontal Cortex Activation.” Proceedings of the National Academy of Sciences 112, no. 28 (2015): 8567–72. https://doi.org/10.1073/pnas.1510459112.

  ADDITIONAL SOURCES

  “Aidan in Prouty Garden at Children’s Hospital Boston,” filmed August 22, 2011. heartof boston268, video, 10:03, https://www.youtube.com/watch?v=gea7au2CL9Y.

  Aoki, Jun, Heiwa Kanamori, Masatsugu Tanaka, Satoshi Yamasaki, Takahiro Fukuda, Hiroyasu Ogawa, Koji Iwato, Kazuteru Ohashi, Hirokazu Okumura, Makoto Onizuka et al. “Impact of Age on Outcomes of Allogeneic Hematopoietic Stem Cell Transplantation with Reduced Intensity Conditioning in Elderly Patients with Acute Myeloid Leukemia.” American Journal of Hematology 91, no. 3 (2016): 302–7. https://doi.org/10.1002/ajh.24270.

  Bejanyan, Nelli, Daniel J. Weisdorf, Brent R. Logan, Hai-Lin Wang, Steven M. Devine, Marcos De Lima, Donald W. Bunjes, and Mei-Jie Zhang. “Survival of Patients with Acute Myeloid Leukemia Relapsing after Allogeneic Hematopoietic Cell Transplantation: A Center for International Blood and Marrow Transplant Research Study.” Biology of Blood and Marrow Transplantation 21, no. 3 (2015): 454–59. https://doi.org/10.1016/j.bbmt.2014.11.007.