- Email: [email protected]
Palliative Care Research in Vulnerable Populations (SA516)
Vol. 51 No. 2 February 2016
Schedule with Abstracts
Use of Advanced Life Support Technology in Patients with Life Threatening Degenerative Conditions (SA515) David Steinhorn, MD FAAP FAAHPM, University of California at Davis Medical Center, Sacramento, CA. Rachel Thienprayoon, MD, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH. Rani Ganesan, MD, Rush University Medical Center, Chicago, IL. Joel Frader, MD, Lurie Children’s Hospital, Chicago, IL. Objectives List at least three advanced life support modalities commonly considered by patients with irreversible organ failure of 1) lung, 2) heart, and 3) neuromuscular system. Modalities discussed will include ventilator, tracheostomy, VADs, longterm IV vasoactive medications, and novel cellular-based therapies, and organ transplantation is not an option. Explore family views of the use of advanced technologies in supporting patients who have lifethreatening progressive loss of vital function. THE PRO ARGUMENT FOR ADVANCED TECHNOLOGY SUPPORT: The attendee will be able to articulate two or three common goals or justifications that families have in using artificial, life prolonging therapies for their children whose natural disease is incurable and would be imminently fatal, and in whom organ transplantation is not an option. THE CON ARGUMENT FOR ADVANCED TECHNOLOGY SUPPORT: The attendee will be able to articulate two or three reasons why some families have chosen not to use artificial life prolonging therapies for their children whose natural disease is incurable and imminently fatal. Parents and children who live with chronic and degenerative medical conditions are frequently called upon to make difficult choices regarding the artificial prolongation of life. By their natures, most of these conditions are fatal. Yet, as technical medicine advances, some patients and parents may feel compelled to sustain life at any cost, while others may choose to avoid such therapies in the face of worsening quality of life. As palliative providers, it is important to have an appreciation of how families have approached such decisions, and how, in retrospect, they view the impact of their choices on fundamental issues such as family relationships and the child’s quality of life. This session will provide an opportunity for palliative providers to understand how medical communication affected such choices and how our role in such conversations might be improved. Risks and benefits of lifeprolonging modalities will be discussed, including the known morbidities and the known and unknown potential to provide more time for a patient. Families
391
will participate in this session. A central aim of this session is to highlight the active pursuit of meaning for one’s life and that of one’s family, and how the value of artificial life-prolonging therapies differs among families of children with progressive illness.
Palliative Care Research in Vulnerable Populations (SA516) Toni Glover, PhD GNP ACHPN, University of Florida College of Nursing, Gainesville, FL. Diana Wilkie, PhD RN FAAN, University of Florida College of Nursing, Gainesville, FL. Gloria Bonner, PhD MSN RN, University of Illinois Chicago College of Nursing, Chicago, IL. Gail Keenan, PhD RN FAAN, University of Florida College of Nursing, Gainesville, FL. Yingwei Yao, PhD, University of Florida College of Nursing, Gainesville, FL. Objectives Characterize recent palliative and end-of-life research involving vulnerable populations, including ethnic/racial minorities, the oldest-old (patients 85+ years of age), and the provision of palliative care in inner city areas. Relate research findings on palliative care research in vulnerable populations to clinical care. Palliative care research has experienced phenomenal growth over the last decade; yet gaps in knowledge remain. This session focuses on palliative care research involving vulnerable populations, including ethnic/racial minorities, the oldest-old (85+ years), and the provision of hospice care in inner city areas. Factors that influence end-of-life treatment decisions made by caregivers for relatives with dementia warrant research. Dr. Bonner will review an empirically based education program to teach African American caregivers of loved ones with advanced stage dementia the skills needed to make informed treatment decisions. Results demonstrate the value in coordinating end-of-life educational activities with mega-churches in the African American community. The oldest-old are the fastest growing segment of the older population. Pain outcomes and the interventions nurses utilize for the hospitalized oldest-old are not well described. Dr. Glover will present findings from the Hands-on Automated Nursing Data System (HANDS) dataset. The sample included 4470 patients 85+ years of age from four hospitals. Fall prevention and pain management were the most common nursing interventions. A third of the sample had a pain-related nursing diagnosis. By virtue of advanced age, multiple comorbidities, and reduced physiologic reserve, the oldest-old comprise a vulnerable population in which a palliative approach to care is warranted.
392
Schedule with Abstracts
Dr Wilkie’s team will present findings on the implementation of an Internet-based intervention to improve pain care for hospice patients with cancer. Using Internet-enabled tablets, patients and caregivers report pain and pain barriers and those in the experimental group receive tailored multimedia education. The hospice nurse receives a daily e-mail with a link to the patient’s pain data and, for those in the experimental group, the nurse also receives decision support for improving pain control. A total of 105 patient-caregiver dyads have participated in the ongoing study. Preliminary results are informative for implementing mobile health research in hospice settings, especially those serving minority patients.
Paper Session Use of Hospice Among Patients with Advanced Heart Failure: A Descriptive Analysis (SA517A) Laura Gelfman, MD MPH, Mount Sinai School of Medicine, New York, NY. Melissa Aldridge, MBA PhD, Icahn School of Medicine at Mount Sinai, New York, NY. Stanley Moore, BS, Self-employed, Bonny Doon, CA. Christopher Murtaugh, PhD, Visiting Nurse Service of NY, New York, NY. Nathan Goldstein, MD FAAHPM, Mount Sinai Hospital, New York, NY. Objectives Characterize the symptom burden, functional status and healthcare utilization in a sample of Medicare beneficiaries with advanced heart failure (HF). Compare the healthcare utilization of patients with advanced heart failure who enroll in hospice and those who do not. Original Research Background. Patients with advanced HF experience high symptom burden, rates of hospital readmission, mortality and costs. Increasing HF hospitalizations is associated with increased mortality. Yet little is known about the minority of patients with advanced HF who receive hospice. Research Objectives. To compare the symptom burden, functional status and healthcare utilization of Medicare beneficiaries with advanced HF who did and did not enroll in hospice. Methods. We conducted a longitudinal cohort study of Medicare beneficiaries in 2009-2010 who had two HF hospitalizations within six months, with the second hospital stay ending with discharge to home health care and then death within six months. We conducted bivariate analyses to compare utilization between second HF discharge to death of those who did and did not enroll in hospice. Results. A total of 7,810 older adults met our inclusion criteria; 3,298 (42.2%) enrolled in hospice. The
Vol. 51 No. 2 February 2016
mean number of days from second HF discharge to hospice enrollment was 67.7 days (SD 47) and average hospice length of stay was 22.4 days (SD 29.9). Prior to enrollment, those who ultimately enrolled in hospice had similar functional status (independent in 4.13 versus 3.82 ADLs, p<0.001), shortness of breath at rest (13.1% versus 12.3%, p ¼ 0.21), and pain all of the time (6.5% versus 6.7%, p ¼ 0.38), compared with those who did not enroll. In the six months following second HF discharge, hospice enrollees had fewer hospitalizations on average compared with those who did not enroll (1.69 versus 1.93, p<0.001) and a lower prevalence of in-hospital death (3.4% versus 56.8%, p<0.001). Conclusion. Those who do and do not enroll with hospice have similarly poor functional status and high symptom burden. Those who receive hospice have fewer hospitalizations and are less likely to die in the hospital.
Implications for Research, Policy, and Practice. Expanding hospice enrollment for HF patients could improve outcomes for this population.
Who Refers to Hospice? A Comparison of Referral Rates by Whether the Attending Physician is Hospitalist, Non-Hospitalist General Practitioner, or Specialist (SA517B) Claire Ankuda, MD, University of Michigan, Ann Arbor, MI. Susan Mitchell, MD MPH, Harvard University, Hebrew SeniorLife, Boston, MA. Pedro Gozalo, PhD, Brown University, Providence, RI. Vincent Mor, PhD, Brown University, Providence, RI. Joan Teno, MDMS Brown University, Providence, RI. Objectives Describe the characteristics of physicians who refer to hospice. List at least three areas of research need in hospice referral patterns. Original Research Background. Little is known about the role of type of attending physician in hospice referral at the time of hospital discharge for nursing home (NH) residents. Research Objectives. We compared hospice referral rates between inpatient physician types (non-hospitalist generalist, specialist and hospitalists) in hospitalized NH residents with advance cognitive impairment (ACI) and severe functional impairment. Methods. Retrospective cohort of NH residents with minimum data set (MDS) assessments completed within 120 days of a hospitalization between 2000 and 2010. All persons had ACI with four activities of daily living (ADL) impairments on MDS assessment. The cohort was from a random 20% sample of Medicare beneficiaries. A hospital fixed-effect model was used to examine the association of the type of
Schedule with Abstracts
Use of Advanced Life Support Technology in Patients with Life Threatening Degenerative Conditions (SA515) David Steinhorn, MD FAAP FAAHPM, University of California at Davis Medical Center, Sacramento, CA. Rachel Thienprayoon, MD, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH. Rani Ganesan, MD, Rush University Medical Center, Chicago, IL. Joel Frader, MD, Lurie Children’s Hospital, Chicago, IL. Objectives List at least three advanced life support modalities commonly considered by patients with irreversible organ failure of 1) lung, 2) heart, and 3) neuromuscular system. Modalities discussed will include ventilator, tracheostomy, VADs, longterm IV vasoactive medications, and novel cellular-based therapies, and organ transplantation is not an option. Explore family views of the use of advanced technologies in supporting patients who have lifethreatening progressive loss of vital function. THE PRO ARGUMENT FOR ADVANCED TECHNOLOGY SUPPORT: The attendee will be able to articulate two or three common goals or justifications that families have in using artificial, life prolonging therapies for their children whose natural disease is incurable and would be imminently fatal, and in whom organ transplantation is not an option. THE CON ARGUMENT FOR ADVANCED TECHNOLOGY SUPPORT: The attendee will be able to articulate two or three reasons why some families have chosen not to use artificial life prolonging therapies for their children whose natural disease is incurable and imminently fatal. Parents and children who live with chronic and degenerative medical conditions are frequently called upon to make difficult choices regarding the artificial prolongation of life. By their natures, most of these conditions are fatal. Yet, as technical medicine advances, some patients and parents may feel compelled to sustain life at any cost, while others may choose to avoid such therapies in the face of worsening quality of life. As palliative providers, it is important to have an appreciation of how families have approached such decisions, and how, in retrospect, they view the impact of their choices on fundamental issues such as family relationships and the child’s quality of life. This session will provide an opportunity for palliative providers to understand how medical communication affected such choices and how our role in such conversations might be improved. Risks and benefits of lifeprolonging modalities will be discussed, including the known morbidities and the known and unknown potential to provide more time for a patient. Families
391
will participate in this session. A central aim of this session is to highlight the active pursuit of meaning for one’s life and that of one’s family, and how the value of artificial life-prolonging therapies differs among families of children with progressive illness.
Palliative Care Research in Vulnerable Populations (SA516) Toni Glover, PhD GNP ACHPN, University of Florida College of Nursing, Gainesville, FL. Diana Wilkie, PhD RN FAAN, University of Florida College of Nursing, Gainesville, FL. Gloria Bonner, PhD MSN RN, University of Illinois Chicago College of Nursing, Chicago, IL. Gail Keenan, PhD RN FAAN, University of Florida College of Nursing, Gainesville, FL. Yingwei Yao, PhD, University of Florida College of Nursing, Gainesville, FL. Objectives Characterize recent palliative and end-of-life research involving vulnerable populations, including ethnic/racial minorities, the oldest-old (patients 85+ years of age), and the provision of palliative care in inner city areas. Relate research findings on palliative care research in vulnerable populations to clinical care. Palliative care research has experienced phenomenal growth over the last decade; yet gaps in knowledge remain. This session focuses on palliative care research involving vulnerable populations, including ethnic/racial minorities, the oldest-old (85+ years), and the provision of hospice care in inner city areas. Factors that influence end-of-life treatment decisions made by caregivers for relatives with dementia warrant research. Dr. Bonner will review an empirically based education program to teach African American caregivers of loved ones with advanced stage dementia the skills needed to make informed treatment decisions. Results demonstrate the value in coordinating end-of-life educational activities with mega-churches in the African American community. The oldest-old are the fastest growing segment of the older population. Pain outcomes and the interventions nurses utilize for the hospitalized oldest-old are not well described. Dr. Glover will present findings from the Hands-on Automated Nursing Data System (HANDS) dataset. The sample included 4470 patients 85+ years of age from four hospitals. Fall prevention and pain management were the most common nursing interventions. A third of the sample had a pain-related nursing diagnosis. By virtue of advanced age, multiple comorbidities, and reduced physiologic reserve, the oldest-old comprise a vulnerable population in which a palliative approach to care is warranted.
392
Schedule with Abstracts
Dr Wilkie’s team will present findings on the implementation of an Internet-based intervention to improve pain care for hospice patients with cancer. Using Internet-enabled tablets, patients and caregivers report pain and pain barriers and those in the experimental group receive tailored multimedia education. The hospice nurse receives a daily e-mail with a link to the patient’s pain data and, for those in the experimental group, the nurse also receives decision support for improving pain control. A total of 105 patient-caregiver dyads have participated in the ongoing study. Preliminary results are informative for implementing mobile health research in hospice settings, especially those serving minority patients.
Paper Session Use of Hospice Among Patients with Advanced Heart Failure: A Descriptive Analysis (SA517A) Laura Gelfman, MD MPH, Mount Sinai School of Medicine, New York, NY. Melissa Aldridge, MBA PhD, Icahn School of Medicine at Mount Sinai, New York, NY. Stanley Moore, BS, Self-employed, Bonny Doon, CA. Christopher Murtaugh, PhD, Visiting Nurse Service of NY, New York, NY. Nathan Goldstein, MD FAAHPM, Mount Sinai Hospital, New York, NY. Objectives Characterize the symptom burden, functional status and healthcare utilization in a sample of Medicare beneficiaries with advanced heart failure (HF). Compare the healthcare utilization of patients with advanced heart failure who enroll in hospice and those who do not. Original Research Background. Patients with advanced HF experience high symptom burden, rates of hospital readmission, mortality and costs. Increasing HF hospitalizations is associated with increased mortality. Yet little is known about the minority of patients with advanced HF who receive hospice. Research Objectives. To compare the symptom burden, functional status and healthcare utilization of Medicare beneficiaries with advanced HF who did and did not enroll in hospice. Methods. We conducted a longitudinal cohort study of Medicare beneficiaries in 2009-2010 who had two HF hospitalizations within six months, with the second hospital stay ending with discharge to home health care and then death within six months. We conducted bivariate analyses to compare utilization between second HF discharge to death of those who did and did not enroll in hospice. Results. A total of 7,810 older adults met our inclusion criteria; 3,298 (42.2%) enrolled in hospice. The
Vol. 51 No. 2 February 2016
mean number of days from second HF discharge to hospice enrollment was 67.7 days (SD 47) and average hospice length of stay was 22.4 days (SD 29.9). Prior to enrollment, those who ultimately enrolled in hospice had similar functional status (independent in 4.13 versus 3.82 ADLs, p<0.001), shortness of breath at rest (13.1% versus 12.3%, p ¼ 0.21), and pain all of the time (6.5% versus 6.7%, p ¼ 0.38), compared with those who did not enroll. In the six months following second HF discharge, hospice enrollees had fewer hospitalizations on average compared with those who did not enroll (1.69 versus 1.93, p<0.001) and a lower prevalence of in-hospital death (3.4% versus 56.8%, p<0.001). Conclusion. Those who do and do not enroll with hospice have similarly poor functional status and high symptom burden. Those who receive hospice have fewer hospitalizations and are less likely to die in the hospital.
Implications for Research, Policy, and Practice. Expanding hospice enrollment for HF patients could improve outcomes for this population.
Who Refers to Hospice? A Comparison of Referral Rates by Whether the Attending Physician is Hospitalist, Non-Hospitalist General Practitioner, or Specialist (SA517B) Claire Ankuda, MD, University of Michigan, Ann Arbor, MI. Susan Mitchell, MD MPH, Harvard University, Hebrew SeniorLife, Boston, MA. Pedro Gozalo, PhD, Brown University, Providence, RI. Vincent Mor, PhD, Brown University, Providence, RI. Joan Teno, MDMS Brown University, Providence, RI. Objectives Describe the characteristics of physicians who refer to hospice. List at least three areas of research need in hospice referral patterns. Original Research Background. Little is known about the role of type of attending physician in hospice referral at the time of hospital discharge for nursing home (NH) residents. Research Objectives. We compared hospice referral rates between inpatient physician types (non-hospitalist generalist, specialist and hospitalists) in hospitalized NH residents with advance cognitive impairment (ACI) and severe functional impairment. Methods. Retrospective cohort of NH residents with minimum data set (MDS) assessments completed within 120 days of a hospitalization between 2000 and 2010. All persons had ACI with four activities of daily living (ADL) impairments on MDS assessment. The cohort was from a random 20% sample of Medicare beneficiaries. A hospital fixed-effect model was used to examine the association of the type of