scholarly journals MEETING PALLIATIVE CARE NEEDS AT THE END OF LIFE IN PATIENTS WITH INTERSTITIAL LUNG DISEASE

2014 ◽  
Vol 4 (Suppl 1) ◽  
pp. A90.1-A90
Author(s):  
Mariam George ◽  
Anisha Sharma ◽  
Barbara Powell ◽  
Rosie Bronnert
Keyword(s):  
Palliative Care ◽  
Interstitial Lung Disease ◽  
Lung Disease ◽  
End Of Life ◽  
Care Needs ◽  
Palliative Care Needs

scholarly journals Specialist palliative care, psychology, interstitial lung disease (ILD) multidisciplinary team meeting: a novel model to address palliative care needs

2018 ◽  
Vol 5 (1) ◽  
pp. e000360 ◽  
Author(s):  
Shaney L Barratt ◽  
Michelle Morales ◽  
Toby Speirs ◽  
Khaled Al Jboor ◽  
Heather Lamb ◽  
...  
Keyword(s):  
Palliative Care ◽  
Interstitial Lung Disease ◽  
Lung Disease ◽  
Multidisciplinary Team ◽  
Hospital Admissions ◽  
Models Of Care ◽  
Specialist Care ◽  
Care Needs ◽  
Unplanned Hospital Admissions ◽  
Palliative Care Needs

IntroductionPatients with progressive idiopathic fibrotic interstitial lung disease (ILD), such as those with idiopathic pulmonary fibrosis (IPF), can have an aggressive disease course, with a median survival of only 3–5 years from diagnosis. The palliative care needs of these patients are often unmet. There are calls for new models of care, whereby the patient’s usual respiratory clinician remains central to the integration of palliative care principles and practices into their patient’s management, but the optimal model of service delivery has yet to be determined.MethodsWe developed a novel, collaborative, multidisciplinary team (MDT) meeting between our palliative care, psychology and ILD teams with the principal aim of integrating specialist care to ensure the needs of persons with ILD, and their caregivers were identified and met by referral to the appropriate service. The objective of this study was to assess the effectiveness of this novel MDT meeting on the assessment of a patient’s palliative care needs.ResultsSignificant increases in advance care planning discussions were observed, in conjunction with increased referrals to community courses and teams, following introduction of this novel MDT.ConclusionsOur results suggest that our collaborative MDT is an effective platform to address patients’ unmet palliative care needs. Further work is required to explore the effect of our model on achieving the preferred place of death and reductions in unplanned hospital admissions.

The palliative care needs for fibrotic interstitial lung disease: A qualitative study of patients, informal caregivers and health professionals

2013 ◽  
Vol 27 (9) ◽  
pp. 869-876 ◽  
Author(s):  
Sabrina Bajwah ◽  
Irene J Higginson ◽  
Joy R Ross ◽  
Athol U Wells ◽  
Surinder S Birring ◽  
...  
Keyword(s):  
Palliative Care ◽  
Interstitial Lung Disease ◽  
Qualitative Study ◽  
Lung Disease ◽  
Health Professionals ◽  
Informal Caregivers ◽  
Care Needs ◽  
Palliative Care Needs

Palliative Care for the Interstitial Lung Disease Patient a Must and Not Just a Need

2021 ◽  
pp. 104990912110402
Author(s):  
Said Chaaban ◽  
James McCormick ◽  
Debra Gleason ◽  
Jessica M. McFarlin
Keyword(s):  
Palliative Care ◽  
Interstitial Lung Disease ◽  
Lung Disease ◽  
Disease Patient ◽  
Care Needs ◽  
Life Planning ◽  
Palliative Care Consultation ◽  
End Of Life Planning ◽  
Planning Methods ◽  
Palliative Care Needs

Patients with interstitial lung disease (ILD) have many unmet palliative care needs. The majority of patients with chronic ILD have poor access to a specialist in palliative medicine and that is due to several barriers. The mortality for the ILD patient is high and reaches up to 80% if admitted to the ICU with respiratory failure. Palliative care addresses symptoms in diseases where cure is unlikely or impossible. Palliative care consultation also ensures communication among patients, caregivers and providers regarding treatments, prognosis, and end of life planning. Methods: We performed a literature review on palliative care and ILD, accessing articles published since 2002. We found 71 articles related to the topic. We chose 37 that were most relevant and with no redundancy of information to include in this review. Objectives: Summarize the palliative care needs of patients with ILD, discuss the barriers to receiving palliative care, and summarize clinical practice for providing palliative care to this patient population.

Pulmonary referrals to specialist palliative medicine: a survey

2021 ◽  
pp. bmjspcare-2021-003386
Author(s):  
Michael Bonares ◽  
Kenneth Mah ◽  
David Christiansen ◽  
John Granton ◽  
Andrea Weiss ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Chronic Respiratory Disease ◽  
Life Care ◽  
Care Needs ◽  
Patients With Cancer ◽  
Referral Criteria ◽  
Referral Practices ◽  
Palliative Care Needs

ObjectivesPatients with chronic respiratory disease have significant palliative care needs, but low utilisation of specialist palliative care (SPC) services. Decreased access to SPC results in unmet palliative care needs among this patient population. We sought to determine the referral practices to SPC among respirologists in Canada.MethodsRespirologists across Canada were invited to participate in a survey about their referral practices to SPC. Associations between referral practices and demographic, professional and attitudinal factors were analysed using regression analyses.ResultsThe response rate was 64.7% (438/677). Fifty-nine per cent of respondents believed that their patients have negative perceptions of palliative care and 39% were more likely to refer to SPC earlier if it was renamed supportive care. While only 2.7% never referred to SPC, referral was late in 52.6% of referring physicians. Lower frequency of referral was associated with equating palliative care to end-of-life care (p<0.001), male sex of respirologist (p=0.019), not knowing referral criteria of SPC services (p=0.015) and agreement that SPC services prioritise patients with cancer (p=0.025); higher referral frequency was associated with satisfaction with SPC services (p=0.001). Late referral was associated with equating palliative care to end-of-life care (p<0.001) and agreement that SPC services prioritise patients with cancer (p=0.013).ConclusionsPossible barriers to respirologists’ timely SPC referral include misperceptions about palliative care, lack of awareness of referral criteria and the belief that SPC services prioritise patients with cancer. Future studies should confirm these barriers and evaluate the effectiveness of strategies to overcome them.

scholarly journals Palliative Care in High-Grade Glioma: A Review

2020 ◽  
Vol 10 (10) ◽  
pp. 723
Author(s):  
Rita C. Crooms ◽  
Nathan E. Goldstein ◽  
Eli L. Diamond ◽  
Barbara G. Vickrey
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
Care Delivery ◽  
High Grade Glioma ◽  
Functional Independence ◽  
High Grade ◽  
Care Needs ◽  
Palliative Care Needs

High-grade glioma (HGG) is characterized by debilitating neurologic symptoms and poor prognosis. Some of the suffering this disease engenders may be ameliorated through palliative care, which improves quality of life for seriously ill patients by optimizing symptom management and psychosocial support, which can be delivered concurrently with cancer-directed treatments. In this article, we review palliative care needs associated with HGG and identify opportunities for primary and specialty palliative care interventions. Patients with HGG and their caregivers experience high levels of distress due to physical, emotional, and cognitive symptoms that negatively impact quality of life and functional independence, all in the context of limited life expectancy. However, patients typically have limited contact with specialty palliative care until the end of life, and there is no established model for ensuring their palliative care needs are met throughout the disease course. We identify low rates of advance care planning, misconceptions about palliative care being synonymous with end-of-life care, and the unique neurologic needs of this patient population as some of the potential barriers to increased palliative interventions. Further research is needed to define the optimal roles of neuro-oncologists and palliative care specialists in the management of this illness and to establish appropriate timing and models for palliative care delivery.

scholarly journals Quality of dying and death in patients with interstitial lung disease compared with lung cancer: an observational study

Thorax ◽  
2020 ◽  
pp. thoraxjnl-2020-215917
Author(s):  
Takafumi Koyauchi ◽  
Yuzo Suzuki ◽  
Kazuki Sato ◽  
Hironao Hozumi ◽  
Masato Karayama ◽  
...  
Keyword(s):  
Lung Cancer ◽  
Decision Making ◽  
Palliative Care ◽  
Interstitial Lung Disease ◽  
Lung Disease ◽  
End Of Life ◽  
Symptom Relief ◽  
Mail Survey ◽  
Quality Of Dying

BackgroundThere is limited knowledge regarding the quality of dying and death (QODD) and end-of-life interventions in patients with interstitial lung disease (ILD). Hence, differences in QODD and end-of-life interventions between patients with ILD and those with lung cancer (LC) remain poorly understood.MethodsThe primary aim of this study was to explore the differences in QODD and end-of-life interventions among patients dying with ILD versus those dying with LC. We performed a mail survey to quantify the QODD of a bereaved family’s perspective using the Good Death Inventory (GDI) score. Moreover, we examined the end-of-life interventions by medical chart review.ResultsOf 361 consecutive patients analysed for end-of-life interventions, 167 patients whose bereaved families completed questionnaires were analysed for QODD. Patients with ILD had lower GDI scores for QODD than those with LC (p=0.04), particularly in domains related to ‘physical and psychological distress relief’ and ‘prognosis awareness and participation in decision making’ (p=0.02, respectively). In end-of-life interventions, patients with ILD were less likely to receive specialised palliative care services (8.5% vs 54.3%; p<0.001) and opioids (58.2% vs 73.4%; p=0.003). Additionally, lower frequencies of participation of patients with ILD in end-of-life discussion were also observed (40.8% vs 62.4%; p=0.007).ConclusionPatients with ILD had lower QODD and poorer access to palliative care and decision making than those with LC. Additional efforts to improve QODD in patients with ILD, particularly in symptom relief and decision-making processes, are urgently warranted.

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