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Palliative Care for Zebras: A Look at Uncommon Diseases (TH334)
354
Schedule With Abstracts
whom to conduct discussions. Choices about these matters may be part of the reason that some studies have shown ACPs to be associated with positive outcomes such as less use of lifesustaining treatments, more use of hospice, less use of hospital at end of life, and reduced resource use, while others fail to show such encouraging results. Selecting the right patients and the right time for ACP can be challenging. Discussing endof-life preferences too early with patients may undermine trust or lead them to make abstract, hypothetical decisions divorced from reality, though delaying the conversation can also have adverse effects, including leaving insufficient time for patients and their families to plan and prepare for the end of life. Evidence suggests that patients in the early stages of disease acceptance may be more distressed and more likely to make decisions for aggressive care. Predicting when patients will lose capacity and face endof-life decisions is also difficult, but patients benefit from having time to come to terms with difficult information. As physicians tend toward overly optimistic prognostication, beginning conversations early seems prudent. The use of the ‘‘surprise’’ questiond‘‘Would you be surprised if this patient died within a year?’’dhas been advocated to account for physician prognostic uncertainty. We will review the evidence regarding the use of the surprise question and strategies based on the epidemiology of disease in patients with end stage renal disease, cancer, congestive heart failure, and chronic obstructive pulmonary disease as well as identify other potential approaches for appropriate patient selection for advance care planning. In addition, disease stage does not predict readiness to talk about end-of-life issues and some patients do not want information. We will discuss the best strategies to identify these patients and what approaches are likely to be effective in this population.
Palliative Care for Zebras: A Look at Uncommon Diseases (TH334) Jennifer Gentry, ANP ACHPN, Duke University Hospital, Durham, NC. Ashlei Lowery, MD, Duke University Health System, Durham, NC. Jessica McFarlin, MD, Duke University, Durham, NC. (All authors listed above had no relevant financial relationships to disclose.)
Vol. 45 No. 2 February 2013
Objectives 1. Describe the presentation of three uncommon life-limiting diseases. 2. Discuss common themes associated with uncommon diseases and how these themes may inform the approach of palliative care teams. 3. Discuss an interdisciplinary approach to formulating a plan of care to address the palliative care needs of patients with uncommon illnesses. Though palliative care clinicians frequently encounter patients with common life-limiting illnesses such as cancer, heart disease, and dementia, it is important for clinicians to be familiar with the presentation and palliative needs of those with uncommon diseases. By definition, a ‘‘rare’’ disease strikes fewer than 1 in every 200,000 Americans. With as many as 7000 rare diseases and 30 million persons affected, it is inevitable that palliative medicine clinicians will encounter these patients in practice. These illnesses may be life-threatening, impose significant symptoms, and are poorly understood by clinicians. By the time a correct diagnosis is made, patients and families have already experienced frequent difficult interactions with the healthcare system and often feel mistrustful and have regret over lost opportunities for earlier diagnosis and management. As a result, several common themes related to patients with uncommon illnesses have emerged and highlight the unknown: disease risk, novelty/isolation, distress, and helplessness. These themes may serve as a guide for palliative care teams involved in the care of such patients. Using a review of an academic medical center’s palliative care database, out of 977 consults over 18 months, we encountered patients with the following three uncommon diagnoses one to two times: progressive multifocal leukoencephalopathy, Huntington’s disease, and Prion diseases. Those affected by these illnesses had frequent long hospitalizations as well as complex social and spiritual issues that required a team effort to address. Further, transitions in care were often complicated by the fact that most uncommon illnesses do not fit cleanly into established criteria for hospice. Using the three diseases above as case examples along with a review of the available evidence, this session will highlight pertinent issues including practical information regarding symptom management, prognostication, disease trajectory,
Vol. 45 No. 2 February 2013
Schedule With Abstracts
and resources, for palliative care clinicians in their approach to patients with uncommon illnesses.
Music as Medicine: Music-Thanatology and the Compounding of Art and Science into Palliative Music Prescriptions (TH335) Sharilyn Cohn, CMTh, SacredFlight, Portland, OR. James Excell, CMTh, Resonance Music, Ashland, OR. Tanya Stewart, MD FAAHPM, Evercare Oregon, Lake Oswego, OR. (All authors listed above had no relevant financial relationships to disclose.) Objectives 1. Describe methodologies used by music-thanatologists in the prescriptive delivery of music in the palliative care setting. 2. Be familiar with current music-thanatology research and its application to the practice of hospice and palliative care. 3. Gain tools to overcome barriers to incorporating music-thanatology into hospice or palliative care settings. Physical, emotional, and existential distress can adversely impact the quality of life of people who are terminally ill or dying and their loved ones. Music-thanatology is a palliative care modality uniting music, medicine, and spirituality to address these complex issues. The musicthanatologist brings harp and voice to the bedside, meeting fear, discomfort, and suffering with the prescriptive qualities of live music. Common patient responses include eased respirations, reduced anxiety and fear, deeper rest, and a sense of peace. Music-thanatology has become best practice in many hospitals and hospices, and is included in physicians’ standing orders for when a patient is placed on comfort measures or is being removed from life-sustaining treatment. Unfortunately, many patients do not receive the benefit of this service, in part due to institutional or palliative care providers’ lack of familiarity with music-thanatology. This session will address music-thanatology’s role in an interdisciplinary end-of-life care plan and provide the listener with an evidence based approach to this discipline. The learner will be guided through the discussion using a case vignette informed by the science of this field. Music-thanatologists will demonstrate a harp vigil during the session. Finally, the listener will leave with tools to teach hospital or hospice
355
administrators about the benefits of this service for patients and families.
Addressing End-of-Life Roadblocks for the Pulmonary Hypertension Patient (TH336) Lindy Landzaat, DO, University of Kansas, Leawood, KS. Timothy Williamson, MD, University of Kansas Medical Center, Kansas City, KS. Ryan Westhoff, MD, University of Kansas Medical Center, Kansas City, KS. (All authors listed above had no relevant financial relationships to disclose with the following exception: Williamson is on the speakers’ bureau and received an honorarium from Actelion Pharmaceuticals; he’s also on the speakers’ bureau and advisory board and received an honorarium from United Therapeutics.) Objectives 1. Review the classification, pathophysiology, and treatment of pulmonary hypertension. 2. List common barriers that pulmonary hypertension patients face near end of life. 3. Discuss some potential ways to overcome endof-life barriers for pulmonary hypertension patients. Pulmonary hypertension is a chronic life-limiting condition that remains without cure and goals of therapy universally include palliation of symptoms and often the hope of prolonging life. Pulmonary hypertension is a condition not well understood by many, but familiarity is important for hospice and palliative care providers. By understanding some of the pathophysiology, classification categories, and treatments for pulmonary hypertension, a hospice and palliative medicine clinician will be better poised to meet the end-of-life needs of their patient. Some of the most intensive therapies of advanced pulmonary hypertension, such as prostacylin analogs, carry their own unique challenges, not only for patients, but also for families and care teams. These challenges often unveil themselves most clearly at end of life. As pulmonary hypertension specialists and centers continue to expand, palliative care and hospice clinicians will have increased exposure to these shared end-of-life challenges. The hospice and palliative care clinician who can anticipate and address these barriers will not only be better prepared and empowered, but more effective end-of-life care delivery. This concurrent session aims to provide a foundation for improved understanding of pulmonary hypertension as
Schedule With Abstracts
whom to conduct discussions. Choices about these matters may be part of the reason that some studies have shown ACPs to be associated with positive outcomes such as less use of lifesustaining treatments, more use of hospice, less use of hospital at end of life, and reduced resource use, while others fail to show such encouraging results. Selecting the right patients and the right time for ACP can be challenging. Discussing endof-life preferences too early with patients may undermine trust or lead them to make abstract, hypothetical decisions divorced from reality, though delaying the conversation can also have adverse effects, including leaving insufficient time for patients and their families to plan and prepare for the end of life. Evidence suggests that patients in the early stages of disease acceptance may be more distressed and more likely to make decisions for aggressive care. Predicting when patients will lose capacity and face endof-life decisions is also difficult, but patients benefit from having time to come to terms with difficult information. As physicians tend toward overly optimistic prognostication, beginning conversations early seems prudent. The use of the ‘‘surprise’’ questiond‘‘Would you be surprised if this patient died within a year?’’dhas been advocated to account for physician prognostic uncertainty. We will review the evidence regarding the use of the surprise question and strategies based on the epidemiology of disease in patients with end stage renal disease, cancer, congestive heart failure, and chronic obstructive pulmonary disease as well as identify other potential approaches for appropriate patient selection for advance care planning. In addition, disease stage does not predict readiness to talk about end-of-life issues and some patients do not want information. We will discuss the best strategies to identify these patients and what approaches are likely to be effective in this population.
Palliative Care for Zebras: A Look at Uncommon Diseases (TH334) Jennifer Gentry, ANP ACHPN, Duke University Hospital, Durham, NC. Ashlei Lowery, MD, Duke University Health System, Durham, NC. Jessica McFarlin, MD, Duke University, Durham, NC. (All authors listed above had no relevant financial relationships to disclose.)
Vol. 45 No. 2 February 2013
Objectives 1. Describe the presentation of three uncommon life-limiting diseases. 2. Discuss common themes associated with uncommon diseases and how these themes may inform the approach of palliative care teams. 3. Discuss an interdisciplinary approach to formulating a plan of care to address the palliative care needs of patients with uncommon illnesses. Though palliative care clinicians frequently encounter patients with common life-limiting illnesses such as cancer, heart disease, and dementia, it is important for clinicians to be familiar with the presentation and palliative needs of those with uncommon diseases. By definition, a ‘‘rare’’ disease strikes fewer than 1 in every 200,000 Americans. With as many as 7000 rare diseases and 30 million persons affected, it is inevitable that palliative medicine clinicians will encounter these patients in practice. These illnesses may be life-threatening, impose significant symptoms, and are poorly understood by clinicians. By the time a correct diagnosis is made, patients and families have already experienced frequent difficult interactions with the healthcare system and often feel mistrustful and have regret over lost opportunities for earlier diagnosis and management. As a result, several common themes related to patients with uncommon illnesses have emerged and highlight the unknown: disease risk, novelty/isolation, distress, and helplessness. These themes may serve as a guide for palliative care teams involved in the care of such patients. Using a review of an academic medical center’s palliative care database, out of 977 consults over 18 months, we encountered patients with the following three uncommon diagnoses one to two times: progressive multifocal leukoencephalopathy, Huntington’s disease, and Prion diseases. Those affected by these illnesses had frequent long hospitalizations as well as complex social and spiritual issues that required a team effort to address. Further, transitions in care were often complicated by the fact that most uncommon illnesses do not fit cleanly into established criteria for hospice. Using the three diseases above as case examples along with a review of the available evidence, this session will highlight pertinent issues including practical information regarding symptom management, prognostication, disease trajectory,
Vol. 45 No. 2 February 2013
Schedule With Abstracts
and resources, for palliative care clinicians in their approach to patients with uncommon illnesses.
Music as Medicine: Music-Thanatology and the Compounding of Art and Science into Palliative Music Prescriptions (TH335) Sharilyn Cohn, CMTh, SacredFlight, Portland, OR. James Excell, CMTh, Resonance Music, Ashland, OR. Tanya Stewart, MD FAAHPM, Evercare Oregon, Lake Oswego, OR. (All authors listed above had no relevant financial relationships to disclose.) Objectives 1. Describe methodologies used by music-thanatologists in the prescriptive delivery of music in the palliative care setting. 2. Be familiar with current music-thanatology research and its application to the practice of hospice and palliative care. 3. Gain tools to overcome barriers to incorporating music-thanatology into hospice or palliative care settings. Physical, emotional, and existential distress can adversely impact the quality of life of people who are terminally ill or dying and their loved ones. Music-thanatology is a palliative care modality uniting music, medicine, and spirituality to address these complex issues. The musicthanatologist brings harp and voice to the bedside, meeting fear, discomfort, and suffering with the prescriptive qualities of live music. Common patient responses include eased respirations, reduced anxiety and fear, deeper rest, and a sense of peace. Music-thanatology has become best practice in many hospitals and hospices, and is included in physicians’ standing orders for when a patient is placed on comfort measures or is being removed from life-sustaining treatment. Unfortunately, many patients do not receive the benefit of this service, in part due to institutional or palliative care providers’ lack of familiarity with music-thanatology. This session will address music-thanatology’s role in an interdisciplinary end-of-life care plan and provide the listener with an evidence based approach to this discipline. The learner will be guided through the discussion using a case vignette informed by the science of this field. Music-thanatologists will demonstrate a harp vigil during the session. Finally, the listener will leave with tools to teach hospital or hospice
355
administrators about the benefits of this service for patients and families.
Addressing End-of-Life Roadblocks for the Pulmonary Hypertension Patient (TH336) Lindy Landzaat, DO, University of Kansas, Leawood, KS. Timothy Williamson, MD, University of Kansas Medical Center, Kansas City, KS. Ryan Westhoff, MD, University of Kansas Medical Center, Kansas City, KS. (All authors listed above had no relevant financial relationships to disclose with the following exception: Williamson is on the speakers’ bureau and received an honorarium from Actelion Pharmaceuticals; he’s also on the speakers’ bureau and advisory board and received an honorarium from United Therapeutics.) Objectives 1. Review the classification, pathophysiology, and treatment of pulmonary hypertension. 2. List common barriers that pulmonary hypertension patients face near end of life. 3. Discuss some potential ways to overcome endof-life barriers for pulmonary hypertension patients. Pulmonary hypertension is a chronic life-limiting condition that remains without cure and goals of therapy universally include palliation of symptoms and often the hope of prolonging life. Pulmonary hypertension is a condition not well understood by many, but familiarity is important for hospice and palliative care providers. By understanding some of the pathophysiology, classification categories, and treatments for pulmonary hypertension, a hospice and palliative medicine clinician will be better poised to meet the end-of-life needs of their patient. Some of the most intensive therapies of advanced pulmonary hypertension, such as prostacylin analogs, carry their own unique challenges, not only for patients, but also for families and care teams. These challenges often unveil themselves most clearly at end of life. As pulmonary hypertension specialists and centers continue to expand, palliative care and hospice clinicians will have increased exposure to these shared end-of-life challenges. The hospice and palliative care clinician who can anticipate and address these barriers will not only be better prepared and empowered, but more effective end-of-life care delivery. This concurrent session aims to provide a foundation for improved understanding of pulmonary hypertension as