Browsing by Subject "advance care planning"
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Item Addressing Personal Barriers to Advance Care Planning: Qualitative Investigation of a Mindfulness-Based Intervention for Adults with Cancer and Their Family Caregivers(Cambridge, 2018) Cottingham, Ann H.; Beck-Coon, Kathleen; Bernat, Jannifer K.; Helft, Paul R.; Schmidt, Karen; Shields, Cleveland G.; Torke, Alexia M.; Johns, Shelley A.; Medicine, School of MedicineObjective Advance care planning (ACP) increases quality of life and satisfaction with care for those with cancer and their families, yet these important conversations often do not occur. Barriers include patients’ and families’ emotional responses to cancer, such as anxiety and sadness, which can lead to avoidance of discussing illness-related topics such as ACP. Interventions that address psychological barriers to ACP are needed. The purpose of this study was to explore the effects of a mindfulness intervention designed to cultivate patient and caregiver emotional and relational capacity to respond to the challenges of cancer with greater ease, potentially decreasing psychological barriers to ACP and enhancing ACP engagement. Method The Mindfully Optimizing Delivery of End-of-Life (MODEL) Care intervention provided 12 hours of experiential training to two cohorts of six to seven adults with advanced-stage cancer and their family caregivers (n = 13 dyads). Training included mindfulness practices, mindful communication skills development, and information about ACP. Patient and caregiver experiences of the MODEL Care program were assessed using semistructured interviews administered immediately postintervention and open-ended survey questions delivered immediately and at 4 weeks postintervention. Responses were analyzed using qualitative methods. Result Four salient themes were identified. Patients and caregivers reported the intervention (1) enhanced adaptive coping practices, (2) lowered emotional reactivity, (3) strengthened relationships, and (4) improved communication, including communication about their disease. Significance of results The MODEL Care intervention enhanced patient and caregiver capacity to respond to the emotional challenges that often accompany advanced cancer and decreased patient and caregiver psychological barriers to ACP.Item Advance Care Planning in the United States: A 2023 review(Elsevier, 2023-08) Fromme, Erik K.; Montgomery, Carole; Hickman, Susan; School of NursingAdvance Care Planning (ACP) in the US is complex due in part to a lack of a unified health care system, though more recent policy changes permitting reimbursement for ACP conversations offer some hope. One key barrier to ACP is public perceptions of ACP, made worse by a historical focus on messaging that is unappealing and does not meet people’s need to focus on the present before contemplating the future. As we learn more about how to engage the public, there is also increasing recognition that the previous focus on making very specific decisions about the future needs to shift to a focus on preparing people for communication and decision making. Numerous programs exist for health care professionals to support meaningful explorations of goals, values, and preferences, and there is growing availability of resources to support this work, both in the community and health care setting. Further research is needed to understand the full complexity of ACP implementation and to identify person-centred outcomes to support high quality ACP.Item Caught in a Loop with Advance Care Planning and Advance Directives: How to Move Forward?(Mary Ann Liebert, Inc., 2022-03) Periyakoil, Vyjeyanthi S.; von Gunten, Charles F.; Arnold, Robert; Hickman, Susan; Morrison, Sean; Sudore, Rebecca; Medicine, School of MedicineCompletion of an advance care planning (ACP) process and/or an advance directive should result in patients receiving the care they desire at the end of life. However, three decades of research have shown that is just not the case. ACP has been a front runner in developing the science within palliative care. Some positive outcomes such as lowering levels of surrogate grief may be associated with ACP. Yet, it does not appear that further ACP research will ensure that seriously ill patients will get goal-concordant care. An unfortunate consequence of palliative care research and advocacy so far is the misguided notion of many hospital systems trying to solve their palliative care problems by only implementing an ACP initiative. At best, ACP is but one tool in the collective palliative care toolbox. New tools are needed. Given that we have finite resources, future research should focus more on tools to improve symptom management, better models of care, and systems that will ensure goal-concordant care that meet the needs of the population that the health care system is designed to meet.Item Comparing Engagement in Advance Care Planning Between Stages of Heart Failure(2019-08) Catalano, Lori A.; Hickman, Susan; Von Ah, Diane; Torke, Alexia; Weaver, MichaelHeart failure is a terminal disease with an unpredictable trajectory. Family members of patients with heart failure are often called upon to make decisions about treatment and end of life care, sometimes with little guidance as to the patients’ wishes. Advance care planning (ACP) is an ongoing process by which patients make decisions about their future healthcare. Only about one-third of patients with heart failure have participated in ACP, which is a similar percentage to the overall population. Despite increased focus on ACP and interventions to improve it, the rates of ACP in the population remain relatively unchanged. There is a need to develop interventions that are targeted based on patient engagement in the process rather than the existing broad-based interventions. The purpose of this dissertation study is to examine the relationship between the American Heart Association stage of heart failure and readiness to engage in advance care planning. The study consisted of mailed surveys that consisted of demographic questionnaires and the Advance Care Planning Engagement Survey. Engagement was analyzed in relation to heart failure stage, heart failure class, comorbidities, perception of health status, recent hospitalizations, making healthcare decisions for others, and demographic variables. The results demonstrated that although there was no significant association between heart failure stage or class and engagement in advance care planning, there were significant associations between medical comorbidities and advance care planning engagement. Other significantly associated participant characteristics included age, gender, education, ethnicity, and income. Findings suggest that people with multiple comorbid conditions will be more likely to be ready to engage in ACP than those with fewer health conditions. The results from this study will contribute to the development of strategies to improve advance care planning that are targeted based on engagement level.Item Development of a Protocol for Successful Palliative Care Consultation in Population of Patients Receiving Mechanical Circulatory Support(Elsevier, 2017) Sinha, Shilpee; Belcher, Carey; Torke, Alexia; Howard, Joycelyn; Caccamo, Marco; Slaven, James A.; Gradus-Pizlo, Irmina; Department of Medicine, School of MedicineBackground In 2014, Joint Commission recommended palliative care (PC) engagement in ventricular assist device (VAD) implantation as destination therapy. Limited information is available on established PC protocols in the mechanical circulatory support (MCS) population. Measures The goals of our PC consultation were to document advance care planning (ACP) discussions and designate a surrogate decision maker (SDM) prior to MCS implantation. A retrospective analysis compared the frequency of PC consults, ACP discussion, and SDM before and after protocol implementation. Intervention A protocol was developed to conduct interdisciplinary PC consultations for the MCS population. Outcomes The percentage of PC consults placed prior to MCS implantation increased from 11 (17.2%) pre-protocol to 56 (96.6%) post-protocol (p<0.0001), and documented SDM increased from 26 (40.6%) pre-protocol to 57 (98.3%) post protocol (p<0.0001). Conclusion Close PC/cardiology collaboration can substantially improve ACP discussions and SDM documentation in the MCS population. This multidisciplinary protocol facilitates successful PC consultations.Item Documentation of advance care planning forms in patients with amyotrophic lateral sclerosis(Wiley, 2022-02) Takacs, Sara M.; Comer, Amber R.; Neurology, School of MedicineIntroduction/Aims Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disorder characterized by progressive weakness. Survival is typically only a few years from symptom onset. The often-predictable disease course creates opportunities to complete advance care planning (ACP) forms. The Physician Orders for Life-Sustaining Treatment (POLST) is a broadly used ACP paradigm to communicate end-of-life wishes but has not been well-studied in the ALS population. Methods In this retrospective chart review study, patients diagnosed with ALS seen between 2014 and 2018 at an academic ALS center were identified. Demographic information, clinical characteristics, and ACP data were collected. Results Of 513 patients identified, 30% had an ACP document. POLST forms were competed in 16.6% of patients with 73.8% of forms signed by a neurologist. Only 5.1% of patients saw a palliative care physician. Palliative care consultation was associated with having an POLST on file (P < .001). Patients with completed POLST forms were significantly more likely to have been seen in clinic more frequently (P < .001) and have a lower ALS Functional Rating Scale—Revised score on last visit (P = .005). Discussion Less than one third of patients with ALS completed an ACP document, and only a small percentage completed POLST forms. The data suggest a need for greater documentation of goals of care in the ALS population.Item Indiana Medical Resident’s Knowledge of Surrogate Decision Making Laws(Sage, 2022-07) Bartlett, Stephanie; Fettig, Lyle P.; Baenziger, Peter H.; DiOrio, Eliana N.; Herget, Kayla M.; D'Cruz, Lynn; Coughlin, Johanna R.; Lake, Mikaela; Truong, Amy; Comer, Amber R.; Health Sciences, School of Health and Human SciencesIntroduction During the care of incapacitated patients, physicians, and medical residents discuss treatment options and gain consent to treat through healthcare surrogates. The purpose of this study is to ascertain medical residents’ knowledge of healthcare consent laws, application during clinical practice, and appraise the education residents received regarding surrogate decision making laws. Methods Beginning in February of 2018, 35 of 113 medical residents working with patients within Indiana completed a survey. The survey explored medical residents’ knowledge of health care surrogate consent laws utilized in Indiana hospitals and Veterans Affairs (VA) hospitals via clinical vignettes. Results Only 22.9% of medical residents knew the default state law in Indiana did not have a hierarchy for settling disputes among surrogates. Medical residents correctly identified which family members could participate in medical decisions 86% of the time. Under the Veterans Affairs surrogate law, medical residents correctly identified appropriate family members or friends 50% of the time and incorrectly acknowledged the chief decision makers during a dispute 30% of the time. All medical residents report only having little or some knowledge of surrogate decision making laws with only 43% having remembered receiving surrogate decision making training during their residency. Conclusions These findings demonstrate that medical residents lack understanding of surrogate decision making laws. In order to ensure medical decisions are made by the appropriate surrogates and patient autonomy is upheld, an educational intervention is required to train medical residents about surrogate decision making laws and how they are used in clinical practice.Item An Interim Analysis of an Advance Care Planning Intervention in the Nursing Home Setting(Wiley, 2016-11) Hickman, Susan E.; Unroe, Kathleen T.; Ersek, Mary T.; Buente, Bryce; Nazir, Arif; Sachs, Greg A.; IU School of NursingObjectives To describe processes and preliminary outcomes from the implementation of a systematic advance care planning (ACP) intervention in the nursing home setting. Design Specially trained project nurses were embedded in 19 nursing homes and engaged in ACP as part of larger demonstration project to reduce potentially avoidable hospitalizations. Setting Nursing homes. Participants Residents enrolled in the demonstration project for a minimum of 30 days between August 2013 and December 2014 (n = 2,709) and residents currently enrolled in March 2015 (n = 1,591). Measurements ACP conversations were conducted with residents, families, and the legal representatives of incapacitated residents using a structured ACP interview guide with the goal of offering ACP to all residents. Project nurses reviewed their roster of currently enrolled residents in March 2015 to capture barriers to engaging in ACP. Results During the initial implementation phase, 27% (731/2,709) of residents had participated in one or more ACP conversations with a project nurse, resulting in a change in documented treatment preferences for 69% (504/731). The most common change (87%) was the generation of a Physician Orders for Scope of Treatment form. The most frequently reported barrier to ACP was lack of time. Conclusion The time- and resource-intensive nature of robust ACP must be anticipated when systematically implementing ACP in the nursing home setting. The fact that these conversations resulted in changes over 2/3 of the time reinforces the importance of deliberate, systematic ACP to ensure that current treatment preferences are known and documented so that these preferences can be honored.Item Mindfulness Training Supports Quality of Life and Advance Care Planning in Adults With Metastatic Cancer and Their Caregivers: Results of a Pilot Study(Sage, 2020-02) Johns, Shelley A.; Beck-Coon, Kathleen; Stutz, Patrick V.; Talib, Tasneem L.; Chinh, Kelly; Cottingham, Ann H.; Schmidt, Karen; Shields, Cleveland; Stout, Madison E.; Stump, Timothy E.; Monahan, Patrick O.; Torke, Alexia M.; Helft, Paul R.; Medicine, School of MedicineBackground: Emotional distress often causes patients with cancer and their family caregivers (FCGs) to avoid end-of-life discussions and advance care planning (ACP), which may undermine quality of life (QoL). Most ACP interventions fail to address emotional barriers that impede timely ACP. Aim: We assessed feasibility, acceptability, and preliminary effects of a mindfulness-based intervention to facilitate ACP for adults with advanced-stage cancer and their FCGs. Design: A single-arm pilot was conducted to assess the impact of a 6-week group mindfulness intervention on ACP behaviors (patients only), QoL, family communication, avoidant coping, distress, and other outcomes from baseline (T1) to post-intervention (T2) and 1 month later (T3). Participants: Eligible patients had advanced-stage solid malignancies, limited ACP engagement, and an FCG willing to participate. Thirteen dyads (N = 26 participants) enrolled at an academic cancer center in the United States. Results: Of eligible patients, 59.1% enrolled. Attendance (70.8% across 6 sessions) and retention (84.6% for patients; 92.3% for FCGs) through T3 were acceptable. Over 90% of completers reported high intervention satisfaction. From T1 to T3, patient engagement more than doubled in each of 3 ACP behaviors assessed. Patients reported large significant decreases in distress at T2 and T3. Family caregivers reported large significant improvements in QoL and family communication at T2 and T3. Both patients and FCGs reported notable reductions in sleep disturbance and avoidant coping at T3. Conclusions: The mindfulness intervention was feasible and acceptable and supported improvements in ACP and associated outcomes for patients and FCGs. A randomized trial of mindfulness training for ACP is warranted.Item “My Future is Now”: A Qualitative Study of Persons Living With Advanced Cancer(Sage, 2018) Cottingham, Ann H.; Cripe, Larry D.; Rand, Kevin L.; Frankel, Richard M.; Medicine, School of MedicineObjectives: Advance care planning (ACP) enables individuals to deliberate about future preferences for care based upon their values and beliefs about what is important in life. For many patients with advanced cancer, however, these critical conversations do not occur. A growing body of literature has examined the end-of-life wishes of seriously ill patients. Few studies have explored what is important to persons as they live with advanced cancer. The aim of the current study was to address this gap and to understand how clinicians can support patients’ efforts to live in the present and plan for the future. Methods: Transcriptions of interviews conducted with 36 patients diagnosed with advanced cancer were analyzed using immersion–crystallization, a qualitative research technique. Results: Four overarching themes were identified: (I) living in the face of death, (II) who I am, (III) my experience of cancer, and (IV) impact of my illness on others. Twelve subthemes are also reported. Significance of Results: These findings have significant implications for clinicians as they partner with patients to plan for the future. Our data suggest that clinicians consider the following 4 prompts: (1) “What is important to you now, knowing that you will die sooner than you want or expected?” (2) “Tell me about yourself.” (3) “Tell me in your own words about your experience with cancer care and treatment.” (4) “What impact has your illness had on others?” In honoring patients’ lived experiences, we may establish the mutual understanding necessary to providing high-quality care that supports patients’ priorities for life.