Barriers to Quality End-of-Life Care for Patients With Blood Cancers

Odejide, Oreofe O.; Cronin, Angel M.; Fletcher, Sean A.; Earle, Craig C.; Tulsky, James A.; Abel, Gregory A.

doi:10.1200/jco.2016.67.8177

Cited by 112 publications

(87 citation statements)

References 34 publications

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“…Consistent with other oncology studies [8,9], we found that survey respondents perceive patients' unrealistic expectations as the most common barrier to accepting PC consultations. For instance, in a survey of 349 medical oncologists, Odejide et al [8] found that 97.3% agreed that unrealistic patient expectations were the largest im- pediment of high-quality end-of-life care, and approximately 65.0% stated that this was either always or often a barrier.…”

Section: Discussionsupporting

confidence: 75%

“…For instance, in a survey of 349 medical oncologists, Odejide et al [8] found that 97.3% agreed that unrealistic patient expectations were the largest im- pediment of high-quality end-of-life care, and approximately 65.0% stated that this was either always or often a barrier. Given the consistent response across studies and disciplines, patients' unrealistic expectations are problematic.…”

Section: Discussionmentioning

confidence: 99%

“…The survey questions were developed and modified from surveys in medical oncology and pediatrics [8,9]. We excluded questions that had elicited < 20% agreement among respondents in the previous studies.…”

Section: Survey Design and Data Collectionmentioning

confidence: 99%

See 2 more Smart Citations

Gynecologic Oncologists’ Perceptions of Palliative Care and Associated Barriers: A Survey of the Society of Gynecologic Oncology

Cripe

Mills

Kuroki

et al. 2018

Gynecol Obstet Invest

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Objectives: Gynecologic oncologists frequently care for patients at the end of life with the aid of palliative care (PC) specialists. Our primary objectives were to identify perceived barriers to integrating specialty PC into gynecologic cancer care. Materials and Methods: Members of the Society of Gynecologic Oncology (SGO) were invited to participate in an anonymous online survey. A Likert scale captured perceptions regarding primary and specialty PC, frequent barriers to use of PC, and potential interventions. Results: A total of 174 (16%) gynecologic oncologists completed the survey. The majority (75%) agreed or strongly agreed that PC should be integrated into cancer care at diagnosis of advanced or metastatic cancer. The most frequently perceived PC barriers included patients’ unrealistic expectations (54%), limited access to specialty PC (25%), poor reimbursement (25%), time constraints (22%), and concern of reducing hope or trust (21%). The most agreed upon potential intervention was increased access to outpatient PC (80%). Conclusions: According to this cohort of SGO members, families’ or patients’ unrealistic expectations are the most frequent barriers to specialty PC. Understanding this communication breakdown is critically important.

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Section: Discussionsupporting

confidence: 75%

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Gynecologic Oncologists’ Perceptions of Palliative Care and Associated Barriers: A Survey of the Society of Gynecologic Oncology

Cripe

Mills

Kuroki

et al. 2018

Gynecol Obstet Invest

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“…Haematology patients often experience bleeding episodes, severe or unusual infections and specific medications (eg, immunosuppressive drugs) that may lead GPs and other generalist physicians to request the transfer of these patients to specialised acute units. Clinical haematologists consulted in focus groups therefore stated that current quality measures were hardly acceptable for patients with haematological malignancies, and that other indicators would reflect more accurately the aggressiveness of care near the end of life 11. In a qualitative interview-based study of 45 British clinicians involved in end-of-life care for patients with haematological malignancies, researchers sought to understand the reasons that could explain the high proportion of patients dying in hospitals 43.…”

Section: Discussionmentioning

confidence: 99%

Hospital end-of-life care in haematological malignancies

Beaussant

Daguindau

Chauchet

et al. 2018

BMJ Support Palliat Care

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A high proportion of patients who died from haematological malignancies receive specific treatments near the end of life. There is a need for a better and earlier integration of the palliative care approach in the standard practice of haematology. However, substantial variation according to the type of haematological malignancy suggests that the patients should not be considered as one homogeneous group. Implementation of palliative care should account for differences across haematological malignancies.

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“…Hematologists also stated that they feel less comfortable discussing death and dying as well as hospice referrals, and they were more likely to feel a sense of failure in cases of disease progression [15]. Asked for the most relevant barriers hampering quality end-of-life care in patients with HM, hematologists reported ‘unrealistic patient expectations' in 97%, ‘clinician concern about taking away hope' in 71%, and ‘unrealistic clinician expectations' in 59% [33]. …”

Section: Barriers and Facilitators For Integration Of Palliative Carementioning

confidence: 99%

Palliative Care in Patients with Hematological Malignancies

Oechsle¹

2018

Oncol Res Treat

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Patients with hematologic malignancies (HM) nowadays rarely receive palliative or hospice care, and studies on potential effects of integrated palliative care are rare. This narrative review provides a comprehensive overview on their current end-of-life care, first data on integrated specialist palliative care (SPC) and potential barriers. Symptom burden and distress in patients with HM seem to be comparable to other cancer patients, but their performance status and specific symptoms are even worse. Prolongation of life usually remains the main focus until the last days or weeks of life. Their chance to die in hospital is twice as high, but their chance to receive specialist palliative or hospice care is only half of that of other cancer patients. Prospective studies indicate a high acceptability and positive effects of integrated SPC, e.g. clarification of treatment goals, stabilization of quality of life, decreased depression, anxiety, symptom burden, and post-traumatic stress disorders. Interdisciplinary cooperation, timely discussions about SPC referral, and indicators to ‘flag' patients in need for SPC are important, but they are largely missing. In conclusion, further studies have to evaluate factors identifying patients with HM in need for SPC. Further models of early integrated palliative care should be evaluated in prospective studies and established in daily clinical practice.

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Barriers to Quality End-of-Life Care for Patients With Blood Cancers

Abstract: In this large national cohort of hematologic oncologists, standard EOL quality measures were highly acceptable. The top barrier to quality EOL care reported was unrealistic patient expectations, which may be best addressed with more timely and effective advance care discussions.

Cited by 112 publications

References 34 publications

Gynecologic Oncologists’ Perceptions of Palliative Care and Associated Barriers: A Survey of the Society of Gynecologic Oncology

Gynecologic Oncologists’ Perceptions of Palliative Care and Associated Barriers: A Survey of the Society of Gynecologic Oncology

Hospital end-of-life care in haematological malignancies

Palliative Care in Patients with Hematological Malignancies

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