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.

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

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 1-2-3 Project: A Quality Improvement Initiative to Normalize and Systematize Palliative Care for All Patients With Cancer in the Outpatient Clinic Setting

2018 ◽  
Vol 14 (12) ◽  
pp. e775-e785 ◽  
Author(s):  
Anjali V. Desai ◽  
Virginia M. Klimek ◽  
Kimberly Chow ◽  
Andrew S. Epstein ◽  
Camila Bernal ◽  
...  
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Outpatient Clinic ◽  
Core Values ◽  
Newly Diagnosed ◽  
Care Needs ◽  
Patients With Cancer ◽  
Palliative Care Consultation ◽  
Care Consultation ◽  
Palliative Care Needs

Background: Prior work to integrate early palliative care in oncology has focused on patients with advanced cancer and primarily on palliative care consultation. We developed this outpatient clinic initiative for newly diagnosed patients at any stage, emphasizing primary (nonspecialist) palliative care by oncology teams, with enhanced access to palliative care specialists. Methods: We piloted the project in two medical oncology specialty clinics (for patients with myelodysplastic syndrome and GI cancer, respectively) to establish feasibility. On a visit-based schedule, patients systematically reported symptoms, information/decision-making preferences, and illness understanding. They also participated in discussions of their core values with their oncology nurse. Oncology teams were first responders to palliative care needs, whereas specialists were available for clinician support and direct patient consultation. Results: All 58 eligible patients were enrolled. In both clinics, patient self-reports documented a heavy symptom burden. Information/decision-making preferences and illness understanding levels varied across patients. Patients prepared new advance directives. Oncology nurses documented discussions of core values. Requests for palliative care consultation decreased over time as oncology teams embraced their primary palliative care role with coaching from the specialists. Clinic workflow and patient volume were maintained. Conclusion: Our pilot experience suggests that in outpatient oncology clinics, a structured, scheduled, and systematic approach is feasible to deliver palliative care to newly diagnosed patients with cancer at any stage and throughout their illness trajectory. This novel approach identified important, actionable palliative care needs, relying primarily on oncology teams to respond to these needs, while enhancing access to palliative care specialist input. Expansion to additional clinics will allow evaluation of scalability and generalizability, along with measurement of a broader range of important outcomes.

Early Identification of Pediatric Neurology Patients With Palliative Care Needs: A Pilot Study

2019 ◽  
Vol 36 (11) ◽  
pp. 959-966
Author(s):  
Ariel Maia Lyons-Warren ◽  
Robert C. Stowe ◽  
Lisa Emrick ◽  
Jill Ann Jarrell
Keyword(s):  
Palliative Care ◽  
Pilot Study ◽  
Hospital Admissions ◽  
Quantitative Measure ◽  
Social Needs ◽  
Care Needs ◽  
Negative Finding ◽  
Pediatric Neurology ◽  
Palliative Care Consultation ◽  
Palliative Care Needs

Palliative care services are beneficial for pediatric neurology patients with chronic, life-limiting illnesses. However, timely referral to palliative care may be impeded due to an inability to identify appropriate patients. The aim of this pilot case–control study was to test a quantitative measure for identifying patients with unmet palliative care needs to facilitate appropriate referrals. First, a random subset of pediatric neurology patients were screened for number of hospital admissions, emergency center visits, and problems on the problem list. Screening results led to the hypothesis that having six or more hospital admissions in one year indicated unmet palliative care needs. Next, hospital admissions in the past year were counted for all patients admitted to the neurology service during a six-month period. Patients with six or more admissions as well as age- and gender-matched controls were assessed for unmet palliative care needs. In hospitalized pediatric neurology patients, having six or more admissions in the preceding year did not predict unmet palliative care needs. While this pilot study did not find a quantitative measure that identifies patients needing a palliative care consultation, the negative finding highlights an important distinction between unmet social needs that interfere with care and unmet palliative care needs. Further, the method of screening patients used in this study was simple to implement and provides a framework for future studies.

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