Abstract:
INTRODUCTION:The concept of hope in palliative care is an important and neglected area of research. Amyotrophic lateral sclerosis (ALS), a progressive degenerative motor neuron disease, offers an excellent opportunity to study this construct as the illness is virtually always fatal. Our research explored the meaning of hope in individuals with ALS. PATIENTS AND METHODS:Sixteen patients (13 males and 3 females; mean age, 54) were interviewed during routine clinic visits to the Forbes Norris MDA/ALS Research Center at California Pacific Medical Center, San Francisco. The Forced Vital Capacity (FVC) Scale and the ALS Functional Rating Scale-Revised (ALSFRS-R) and a Hope Scale were administered. Themes of hope were identified and categorized. RESULTS:Hope categories included: (1) hope for a cure, (2) social support, (3) search for information, (4) spiritual beliefs, (5) limiting the impact, (6) adapting to changing capacities, (7) living in the moment, and (8) self-transcendence. The relationship between hope and the FVC value and individual as well as overall ALSFRS-R ratings were examined, and none were significant. DISCUSSION:Individuals varied in their capacity to cope with their illness unrelated to their physical ability. Themes ranged from a primary focus on the self to one of heightened concern for others, on continuum from narcissism to altruism. Respondents cited using a number of categories of hope (mean=5). CONCLUSION:Patients draw upon a variety of mechanisms to sustain hope when facing chronic disease, including hope for a cure, support from others, seeking information, spiritual beliefs, limiting the impact, adapting to changing capacities, living in the moment, and transcending the self. The palliative care team can play an important role by promoting discussions regarding hopefulness and its many forms in individuals with ALS.
journal_name
J Palliat Medjournal_title
Journal of palliative medicineauthors
Fanos JH,Gelinas DF,Foster RS,Postone N,Miller RGdoi
10.1089/jpm.2007.0098subject
Has Abstractpub_date
2008-04-01 00:00:00pages
470-5issue
3eissn
1096-6218issn
1557-7740journal_volume
11pub_type
杂志文章abstract:BACKGROUND:Palliative care unit (PCU) beds are a limited resource in Canada, so PCU admission is restricted to patients with a short prognosis. Anecdotally, PCUs further restrict admission of patients with noncancer diagnoses out of fear that they will "oversurvive" and reduce bed availability. This raises concerns tha...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2011.0401
更新日期:2012-06-01 00:00:00
abstract:BACKGROUND:Clinical experience and a limited number of studies suggest that a cancer diagnosis confers a high risk of accidental falls. The negative sequelae of falls in older persons are well documented; risk factors for falls in this population have been extensively investigated and evidence for the efficacy of inter...
journal_title:Journal of palliative medicine
pub_type: 杂志文章,评审
doi:10.1089/jpm.2010.0326
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abstract:: Background: Methadone may play a role in the control of refractory cancer pain in opioid switching, although some cases fail to switch to methadone. Objective: To evaluate the differences in the clinical aspects in switching to...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
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更新日期:2019-07-01 00:00:00
abstract:BACKGROUND:Acupressure is a widely used adjunct for various symptoms in patients with nonchronic kidney disease. However, its role for symptom management in end-stage renal disease (ESRD) populations is not clear. OBJECTIVE:To summarize and critically evaluate the evidence available from randomized clinical trials (RC...
journal_title:Journal of palliative medicine
pub_type: 杂志文章,评审
doi:10.1089/jpm.2009.0363
更新日期:2010-07-01 00:00:00
abstract:BACKGROUND:Antiemetics are being used both for the treatment and prophylaxis of opioid-induced nausea and vomiting (OINV) in clinical practice, despite the lack of evidence for the prophylactic benefit. Data regarding the actual status of prophylactic antiemetic use for OINV remain to be elucidated. OBJECTIVE:The obje...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2015.0203
更新日期:2015-11-01 00:00:00
abstract:BACKGROUND:Seriously ill older adults in the emergency department (ED) may benefit from palliative care referral, yet little is known about how to identify these patients. OBJECTIVES:To assess the performance and determine the acceptability of a content-validated palliative care screening tool. DESIGN:We surveyed Eme...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2016.0213
更新日期:2017-01-01 00:00:00
abstract::A patient with advanced pancreatic cancer is presented to demonstrate the clinical challenge of diagnosing depression in palliative care. The conundrum related to the relative roles of somatic and psychological symptoms in screening or diagnosing depression in these patients is illustrated and discussed. There is no c...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/109662101300051906
更新日期:2001-04-01 00:00:00
abstract:: Background: The lack of consumer knowledge and misconception of services could impede requests for and acceptance of palliative care. YouTube has been widely used for health information dissemination. Objective: To explore the ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章,评审
doi:10.1089/jpm.2019.0047
更新日期:2019-12-01 00:00:00
abstract::An advance directive, a description of one's future preferences for medical treatment, must be easily available to care providers to ensure that one's treatment preferences are honored. The transition of our health care system to an electronic medical record complicated the availability of a patient's written advance ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/109662103322144880
更新日期:2003-06-01 00:00:00
abstract:BACKGROUND:African Americans in the United States have worse end-of-life care and cancer outcomes than whites. Palliative care may improve this disparity. Community Health Workers may provide a means to improve palliative care disparities. METHODS:Semistructured in-depth interviews (five) and stakeholder focus groups ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2018.0366
更新日期:2019-03-01 00:00:00
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journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2016.0455
更新日期:2017-08-01 00:00:00
abstract:BACKGROUND:Patients receiving hospice or palliative care often receive antimicrobial therapy; however the effectiveness of antimicrobial therapy for symptom management in these patients is unknown. OBJECTIVE:The study's objective was to systematically review and summarize existing data on the prevalence and effectiven...
journal_title:Journal of palliative medicine
pub_type: 杂志文章,评审
doi:10.1089/jpm.2013.0276
更新日期:2013-12-01 00:00:00
abstract:BACKGROUND:Depression and pain often coexist in terminally ill patients, but few studies have examined their relationship among larger samples. Other psychosocial factors experienced by patients may become barriers to pain management and affect the relationship between depression and pain. OBJECTIVE:This study aims to...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2013.0555
更新日期:2014-05-01 00:00:00
abstract:BACKGROUND:The oral food intake of terminally ill cancer patients is known to gradually decrease, but there are few reports about how oral intake changes around the terminal stage. It is important to clarify changes in oral food intake, as such changes affect the support and care of terminally ill cancer patients. OBJ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2015.0495
更新日期:2016-08-01 00:00:00
abstract:PURPOSE:There have been no studies to date that examine physicians' decisions to withdraw life-sustaining treatment for patients based on their surrogates' financial gain. The authors' objective was to ascertain physician attitudes about withdrawing life-sustaining treatment when financial considerations are involved. ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2013.0361
更新日期:2014-05-01 00:00:00
abstract:BACKGROUND:Cancer and its treatment can significantly affect appearance and body integrity. A number of studies have explored the impact of cancer and its treatment on body image, primarily in head and neck and breast cancer. The aim of this pilot study was to examine the construct of body image dissatisfaction and its...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2013.0588
更新日期:2015-02-01 00:00:00
abstract::The celiac plexus block is an approved method for the relief of upper abdominal cancer pain. Classically, fluoroscopy-guided posterior approach to the celiac plexus block has been used. Computed tomography-guided anterior approach and endoscopic ultrasound-guided approach have also been utilized. An ultrasound-guided ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2008.0082
更新日期:2008-11-01 00:00:00
abstract:BACKGROUND:Critical care nurse communication training has largely been limited to didactic materials, interactive training for nurse supervisors, or brief participatory learning programs within the context of comprehensive end-of-life care educational seminars. Preliminary evidence suggests that an interactive approach...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2011.0225
更新日期:2011-12-01 00:00:00
abstract:BACKGROUND:Previous research has reported improved pain after adding methadone to another opioid, but did not quantify this benefit using a validated outcome measure. OBJECTIVE:To assess quantitatively the effectiveness of adding methadone to another opioid for moderate to severe cancer-related pain. DESIGN:All outpa...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2012.0335
更新日期:2013-03-01 00:00:00
abstract:OBJECTIVES:To review studies that used direct observation (i.e., videotaping or audiotaping) methods in palliative/end-of-life care communication research. DESIGN:Descriptive thematic analysis. SETTING:Multinational studies were conducted in both the outpatient and inpatient setting. MEASUREMENTS:Extensive bibliogra...
journal_title:Journal of palliative medicine
pub_type: 杂志文章,评审
doi:10.1089/jpm.2009.0388
更新日期:2010-05-01 00:00:00
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journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2009.0053
更新日期:2009-08-01 00:00:00
abstract:OBJECTIVES:To continuously assess overall quality of life (QOL) and disease progression in patients with amyotrophic lateral sclerosis (ALS) at different stages of the disease and compare the results between these two variables. DESIGN/SUBJECTS:Twenty-six patients with ALS were interviewed with a questionnaire to asse...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2006.9.304
更新日期:2006-04-01 00:00:00
abstract:BACKGROUND:Few studies have focused on men as caregivers at the end-of-life. The objective of this secondary data analysis was to examine the experiences of men involved in end-of-life caregiving, focusing on caregiver strain. METHODS:We used a random sample of Oregon death certificates to telephone survey family care...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2005.8.1167
更新日期:2005-12-01 00:00:00
abstract:BACKGROUND:Care team members may have different views on end-of-life care, which may influence perceptions of that care. METHODS:Twenty-seven consecutive deaths at a long-term care facility were identified. A structured interview of primary care team members (physician, nurse, and aide) was administered. The interview...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/109662101300051889
更新日期:2001-04-01 00:00:00
abstract::Louisiana State Penitentiary (Angola) has a large population of aging men serving long sentences with little hope of reprieve. Eighty-five percent of the 5108 inmates currently incarcerated at Angola are expected to die there. The prison, in partnership with University Hospital Community Hospice in New Orleans, has cr...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/109662102760269797
更新日期:2002-08-01 00:00:00
abstract:BACKGROUND:Additional evidence is needed regarding the impact of inpatient palliative care (IPC) on the quality of end-of-life care and downstream utilization. AIM:Examine the effects of IPC on quality of end-of-life care and acute and postacute care use in a large integrated system. DESIGN:Retrospective cohort desig...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2017.0275
更新日期:2018-07-01 00:00:00
abstract:BACKGROUND:Pain, not responsive to opioid analgesics, remains a problem for patients with chronic and cancer pain as well as their families, and clinicians. Opioid antagonists have various uses in pain and palliative care. Their use in the reversal of tolerance and hyperalgesia remains at the basic science level and ha...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2006.9.1250
更新日期:2006-12-01 00:00:00
abstract:OBJECTIVE:The objective was to explore the utility of a new three-item depression screening tool concerning time and life perception (TLP-3), compared with the DSM-IV criteria. METHODS:This was a cross-sectional study of 63 Portuguese terminally ill patients, from May 2010 to November 2012. Patients were eligible if t...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/jpm.2013.0149
更新日期:2013-11-01 00:00:00
abstract:BACKGROUND:Psychiatric research in the 1950s and 1960s showed potential for psychedelic medications to markedly alleviate depression and suffering associated with terminal illness. More recent published studies have demonstrated the safety and efficacy of psilocybin, MDMA, and ketamine when administered in a medically ...
journal_title:Journal of palliative medicine
pub_type: 杂志文章,评审
doi:10.1089/jpm.2017.0684
更新日期:2018-04-01 00:00:00
abstract::The emerging role of the advanced practice nurse (APN) as a palliative care provider is gaining increased recognition in the United States. The APN's ability to perform comprehensive physical evaluations, order and interpret diagnostics, and prescribe appropriate medications while receiving reimbursement allow this pr...
journal_title:Journal of palliative medicine
pub_type: 杂志文章
doi:10.1089/109662103322515211
更新日期:2003-10-01 00:00:00