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“My Baby Is A Person”: Parents’ Experiences With Life-Threatening Fetal Diagnosis (313-A)
340
Schedule With Abstracts
Reporting Dementia on Hospice Claims of Nursing Home Residents Dying With Advanced Dementia (312-C) Susan Miller, PhD, Brown University, Providence, RI. Julie Lima, PhD MPH, Brown University, Providence, RI. Susan Mitchell, MD MPH, Harvard University Hebrew Senior Life, Boston, MA. (All authors listed above for this session have disclosed no relevant financial relationships.) Objectives 1. Describe what diagnoses are documented on hospice claims for nursing home residents dying with advanced dementia and on hospice. 2. Discuss the factors associated with the absence of dementia diagnoses on hospice claims for nursing home residents dying with advanced dementia and on hospice. Background. Nearly 40% of nursing home (NH) residents with advanced dementia receive NH hospice care prior to death. Research objectives. To describe diagnoses on hospice claims for NH residents with advanced dementia and examine factors associated with the absence of dementia diagnoses. Method. This cross-sectional study included US NH residents dying with Medicare hospice care in 2006 and identified as having advanced dementia (36,865). Resident assessment (MDS) data linked to Medicare claims and denominator data was used to identify resident characteristics, NH death, and the presence of advanced dementia. Advanced dementia was identified by a diagnosis of Alzheimer’s disease or dementia on the MDS or a Medicare Part-A claim in the last year of life and documentation on the MDS of severe to very severe cognitive impairment (a score of 5 or 6 on the MDS cognitive performance scale). Hospice providers were characterized by their 2006 fiscal intermediaries and by data in the hospice provider of service file. Multi-level logit regression analysis was used to examine the factors associated with the absence of a coded dementia diagnosis on the last hospice claim and with the presence of a debility or failure to thrive diagnosis (and no dementia diagnosis). Result. 44% (16,293) of US NH hospice decedents identified as having advanced dementia did not have dementia diagnoses documented. Of these, debility (3,122; 19.2%) and failure to
Vol. 43 No. 2 February 2012
thrive (2,520; 15.5%) were most frequently reported. Controlling for resident characteristics and regional variation, a hospice’s fiscal intermediary was significantly associated with the likelihood of a claim having a debility or failure to thrive diagnosis (p < .001). Conclusion. Dementia is underreported on hospice claims and the documentation of debility or failure to thrive (without dementia) may be over reported. Implications for research, policy, or practice. The underreporting of dementia on hospice claims results in inaccurate portrayals of the receipt of hospice care received by persons with dementia.
‘‘My Baby Is A Person’’: Parents’ Experiences With Life-Threatening Fetal Diagnosis (313-A) Erin Denney-Koelsch, MD, University of Rochester, Rochester, NY. Denise Cote-Arsenault, PhD RNC FNAP, University of Rochester, Manlius, NY. (All authors listed above for this session have disclosed no relevant financial relationships.) Objectives 1. List three concerns raised by parents in their interactions with medical providers. 2. Describe the disconnect between parental experiences of pregnancy with a LFD and the response of others to the situation. 3. State one approach that could be used to legitimize the personhood of these families’ unborn baby. Background. Diagnosis of a lethal fetal diagnosis (LFD) early in pregnancy is devastating for parents. Those who choose to continue with the pregnancy report intense emotional reactions and inconsistent, often insensitive treatment by healthcare providers. Research objectives. We sought to clarify the experiences and needs of families in order to design responsive perinatal palliative care services and to establish the feasibility and acceptability of conducting intensive interviews of pregnant women and their partners during their pregnancy with a LFD. Method. In this qualitative descriptive study, we interviewed two women and three couples during pregnancy or just after birth, using open-
Vol. 43 No. 2 February 2012
Schedule With Abstracts
ended questions. Audiotaped responses were analyzed by two investigators. Result. Two dimensions and six themes emerged. In the dimension of Personal Pregnancy Experience, ‘‘Grieving Multiple Losses’’ elucidates that parents grieve the loss of their normal pregnancy, healthy baby, and future parenting. ‘‘Arrested Parenting’’ describes their sudden interruption in the normal process of becoming a parent. ‘‘My Baby is a Person’’ reflects parents’ unanimous desire to honor the humanity of their unborn baby. In the dimension Reactions of Others, three themes were found. ‘‘Fragmented Health Care’’ describes parent’s disjointed encounters with multiple providers. ‘‘Disconnected Family and Friends’’ describes the lack of understanding of what the families were experiencing by others. ‘‘Utter Isolation’’ expresses how the parents’ sense of social isolation adds to their personal sense of loss and loneliness. Conclusion. The deep divide between the parents’ personal experience and the social experience was a source of pain beyond their feelings of grief and loss. Implications for research, policy, or practice. The study reveals issues to be considered in the development of perinatal palliative care programs, including parents’ need to be treated as real parents, with acknowledgement of their baby as a person. They ask for supportive counseling to help them understand medical conditions, make informed decisions, and communicate with multiple providers.
Using a Simulation Lab to Deliver Pediatric Bad News (313-B) Kelly Komatz, MD MPH, UF College of Medicine, Jacksonville, FL. Jose Zayas, DO, University of Floriday, Jacksonville, FL. (All authors listed above for this session have disclosed no relevant financial relationships.) Objectives 1. Discuss how to utilizing live-actors in a simulation lab to engage with adult learners. 2. Discuss the development of pediatric-casebased scenarios when delivering bad news. Background. Interpersonal skills and communication is one of the six core competencies
341
of graduate medical education. Few medical schools and residencies offer opportunities to enhance communication skills with live "patients." This pilot program developed pediatric-based scenarios encountered in endof-life discussions and used trained actors in a simulation center. Research objectives. (a) To improve communication skills in pediatric residents when delivering bad news. (b) To follow pediatric residents longitudinally in becoming experts in delivering bad news. Method. Pediatric-specific scenarios were developed and trained actors role-played the family and/or patient in each scenario. The resident was introduced to the scenario and then began the interaction with the family/patient. The simulation center recorded each of the scenarios. All residents participated in at least one scenario during the session. The scenarios were: prenatal diagnosis of Trisomy 18, recurrence of cancer after bone marrow transplant in a 17-year-old, new diagnosis of HIV, and ventilator/life support withdrawal in patient who sustained head trauma. Result. Analysis of the questionnaires was performed using both univariate and bivariate analysis. After participating in the scenarios, residents had improved comfort in speaking to families/patients about bad news. The largest changes were related to speaking about hospice/palliative care and prenatal diagnosis. Conclusion. Utilization of trained actors in a simulation setting can effectively enhance residents’ comfort in delivering bad news, in this study specifically in pediatric scenarios. This comfort can translate into effective communication skills throughout the residents’ training. Implications for research, policy, or practice. Trained actors and physicians can interact in a simulation setting to enhance their communication skills. Through reviewing of video and immediate feedback from peers and faculty members, the participant can have time to reflect on their interpersonal and communication skills when in their role as the physician delivering bad news. This exercise will become an annual requirement for all pediatric residents and fellows and their growth will be followed longitudinally.
Schedule With Abstracts
Reporting Dementia on Hospice Claims of Nursing Home Residents Dying With Advanced Dementia (312-C) Susan Miller, PhD, Brown University, Providence, RI. Julie Lima, PhD MPH, Brown University, Providence, RI. Susan Mitchell, MD MPH, Harvard University Hebrew Senior Life, Boston, MA. (All authors listed above for this session have disclosed no relevant financial relationships.) Objectives 1. Describe what diagnoses are documented on hospice claims for nursing home residents dying with advanced dementia and on hospice. 2. Discuss the factors associated with the absence of dementia diagnoses on hospice claims for nursing home residents dying with advanced dementia and on hospice. Background. Nearly 40% of nursing home (NH) residents with advanced dementia receive NH hospice care prior to death. Research objectives. To describe diagnoses on hospice claims for NH residents with advanced dementia and examine factors associated with the absence of dementia diagnoses. Method. This cross-sectional study included US NH residents dying with Medicare hospice care in 2006 and identified as having advanced dementia (36,865). Resident assessment (MDS) data linked to Medicare claims and denominator data was used to identify resident characteristics, NH death, and the presence of advanced dementia. Advanced dementia was identified by a diagnosis of Alzheimer’s disease or dementia on the MDS or a Medicare Part-A claim in the last year of life and documentation on the MDS of severe to very severe cognitive impairment (a score of 5 or 6 on the MDS cognitive performance scale). Hospice providers were characterized by their 2006 fiscal intermediaries and by data in the hospice provider of service file. Multi-level logit regression analysis was used to examine the factors associated with the absence of a coded dementia diagnosis on the last hospice claim and with the presence of a debility or failure to thrive diagnosis (and no dementia diagnosis). Result. 44% (16,293) of US NH hospice decedents identified as having advanced dementia did not have dementia diagnoses documented. Of these, debility (3,122; 19.2%) and failure to
Vol. 43 No. 2 February 2012
thrive (2,520; 15.5%) were most frequently reported. Controlling for resident characteristics and regional variation, a hospice’s fiscal intermediary was significantly associated with the likelihood of a claim having a debility or failure to thrive diagnosis (p < .001). Conclusion. Dementia is underreported on hospice claims and the documentation of debility or failure to thrive (without dementia) may be over reported. Implications for research, policy, or practice. The underreporting of dementia on hospice claims results in inaccurate portrayals of the receipt of hospice care received by persons with dementia.
‘‘My Baby Is A Person’’: Parents’ Experiences With Life-Threatening Fetal Diagnosis (313-A) Erin Denney-Koelsch, MD, University of Rochester, Rochester, NY. Denise Cote-Arsenault, PhD RNC FNAP, University of Rochester, Manlius, NY. (All authors listed above for this session have disclosed no relevant financial relationships.) Objectives 1. List three concerns raised by parents in their interactions with medical providers. 2. Describe the disconnect between parental experiences of pregnancy with a LFD and the response of others to the situation. 3. State one approach that could be used to legitimize the personhood of these families’ unborn baby. Background. Diagnosis of a lethal fetal diagnosis (LFD) early in pregnancy is devastating for parents. Those who choose to continue with the pregnancy report intense emotional reactions and inconsistent, often insensitive treatment by healthcare providers. Research objectives. We sought to clarify the experiences and needs of families in order to design responsive perinatal palliative care services and to establish the feasibility and acceptability of conducting intensive interviews of pregnant women and their partners during their pregnancy with a LFD. Method. In this qualitative descriptive study, we interviewed two women and three couples during pregnancy or just after birth, using open-
Vol. 43 No. 2 February 2012
Schedule With Abstracts
ended questions. Audiotaped responses were analyzed by two investigators. Result. Two dimensions and six themes emerged. In the dimension of Personal Pregnancy Experience, ‘‘Grieving Multiple Losses’’ elucidates that parents grieve the loss of their normal pregnancy, healthy baby, and future parenting. ‘‘Arrested Parenting’’ describes their sudden interruption in the normal process of becoming a parent. ‘‘My Baby is a Person’’ reflects parents’ unanimous desire to honor the humanity of their unborn baby. In the dimension Reactions of Others, three themes were found. ‘‘Fragmented Health Care’’ describes parent’s disjointed encounters with multiple providers. ‘‘Disconnected Family and Friends’’ describes the lack of understanding of what the families were experiencing by others. ‘‘Utter Isolation’’ expresses how the parents’ sense of social isolation adds to their personal sense of loss and loneliness. Conclusion. The deep divide between the parents’ personal experience and the social experience was a source of pain beyond their feelings of grief and loss. Implications for research, policy, or practice. The study reveals issues to be considered in the development of perinatal palliative care programs, including parents’ need to be treated as real parents, with acknowledgement of their baby as a person. They ask for supportive counseling to help them understand medical conditions, make informed decisions, and communicate with multiple providers.
Using a Simulation Lab to Deliver Pediatric Bad News (313-B) Kelly Komatz, MD MPH, UF College of Medicine, Jacksonville, FL. Jose Zayas, DO, University of Floriday, Jacksonville, FL. (All authors listed above for this session have disclosed no relevant financial relationships.) Objectives 1. Discuss how to utilizing live-actors in a simulation lab to engage with adult learners. 2. Discuss the development of pediatric-casebased scenarios when delivering bad news. Background. Interpersonal skills and communication is one of the six core competencies
341
of graduate medical education. Few medical schools and residencies offer opportunities to enhance communication skills with live "patients." This pilot program developed pediatric-based scenarios encountered in endof-life discussions and used trained actors in a simulation center. Research objectives. (a) To improve communication skills in pediatric residents when delivering bad news. (b) To follow pediatric residents longitudinally in becoming experts in delivering bad news. Method. Pediatric-specific scenarios were developed and trained actors role-played the family and/or patient in each scenario. The resident was introduced to the scenario and then began the interaction with the family/patient. The simulation center recorded each of the scenarios. All residents participated in at least one scenario during the session. The scenarios were: prenatal diagnosis of Trisomy 18, recurrence of cancer after bone marrow transplant in a 17-year-old, new diagnosis of HIV, and ventilator/life support withdrawal in patient who sustained head trauma. Result. Analysis of the questionnaires was performed using both univariate and bivariate analysis. After participating in the scenarios, residents had improved comfort in speaking to families/patients about bad news. The largest changes were related to speaking about hospice/palliative care and prenatal diagnosis. Conclusion. Utilization of trained actors in a simulation setting can effectively enhance residents’ comfort in delivering bad news, in this study specifically in pediatric scenarios. This comfort can translate into effective communication skills throughout the residents’ training. Implications for research, policy, or practice. Trained actors and physicians can interact in a simulation setting to enhance their communication skills. Through reviewing of video and immediate feedback from peers and faculty members, the participant can have time to reflect on their interpersonal and communication skills when in their role as the physician delivering bad news. This exercise will become an annual requirement for all pediatric residents and fellows and their growth will be followed longitudinally.