Advertisement

Advance care planning in older patients with acute myeloid leukemia and myelodysplastic syndromes

Published:September 10, 2022DOI:https://doi.org/10.1016/j.jgo.2022.09.003

      Abstract

      Introduction

      Older patients with acute myeloid leukemia (AML) and myelodysplastic syndromes (MDS) have worse survival rates compared to younger patients, and experience more intense inpatient healthcare at the end of life (EOL) compared to patients with solid tumors. Advance care planning (ACP) has been shown to limit aggressive and burdensome care at EOL for patients with AML and MDS. The purpose of this study was to better understand ACP from the perspective of clinicians, older patients with AML and MDS, and their caregivers.

      Materials and Methods

      We conducted semi-structured interviews with 45 study participants. Interviews were audio-recorded and transcribed. Open coding and focused content analysis were used to organize data and develop and contextualize categories and subcategories.

      Results

      Guided by our specific aims, we developed four themes: (1) The language of ACP and medical order for life-sustaining treatment (MOLST) does not resonate with patients, (2) There is no uniform consensus on when ACP is currently happening, (3) Oncology clinician-perceived barriers to ACP (e.g., patient discomfort, patient lack of knowledge, and lack of time), and (4) Patients felt that they are balancing fear and hope when navigating their AML or MDS diagnosis.

      Discussion

      The results of this study can be used to develop interventions to promote serious illness conversations for patients with AML and MDS and their caregivers to ensure that patient care aligns with patient values.

      Keywords

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to Journal of Geriatric Oncology
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • Shallis R.M.
        • Wang R.
        • Davidoff A.
        • Ma X.
        • Zeidan A.M.
        Epidemiology of acute myeloid leukemia: recent progress and enduring challenges.
        Blood Rev. 2019; 36: 70-87
        • Zeidan A.M.
        • Shallis R.M.
        • Wang R.
        • Davidoff A.
        • Ma X.
        Epidemiology of myelodysplastic syndromes: why characterizing the beast is a prerequisite to taming it.
        Blood Rev. 2019; 34: 1-15
        • Lerch E.
        • Espeli V.
        • Zucca E.
        • Leoncini L.
        • Scali G.
        • Mora O.
        • et al.
        Prognosis of acute myeloid leukemia in the general population: data from southern Switzerland.
        Tumori. 2009; 95: 303-310
        • Alibhai S.M.
        • Leach M.
        • Minden M.D.
        • Brandwein J.
        Outcomes and quality of care in acute myeloid leukemia over 40 years.
        Cancer. 2009; 115: 2903-2911
        • Verhoef M.J.
        • de Nijs E.J.M.
        • Ootjers C.S.
        • Fiocco M.
        • Fogteloo A.J.
        • Heringhaus C.
        • et al.
        End-of-life trajectories of patients with hematological malignancies and patients with advanced solid tumors visiting the emergency department: the need for a proactive integrated care approach.
        Am J Hosp Palliat Care. 2020; 37: 692-700
        • Hui D.
        • Didwaniya N.
        • Vidal M.
        • Shin S.H.
        • Chisholm G.
        • Roquemore J.
        • et al.
        Quality of end-of-life care in patients with hematologic malignancies: a retrospective cohort study.
        Cancer. 2014; 120: 1572-1578
        • El-Jawahri A.R.
        • Abel G.A.
        • Steensma D.P.
        • LeBlanc T.W.
        • Fathi A.T.
        • Graubert T.A.
        • et al.
        Health care utilization and end-of-life care for older patients with acute myeloid leukemia.
        Cancer. 2015; 121: 2840-2848
        • Wang R.
        • Zeidan A.M.
        • Halene S.
        • Xu X.
        • Davidoff A.J.
        • Huntington S.F.
        • et al.
        Health care use by older adults with acute myeloid leukemia at the end of life.
        J Clin Oncol. 2017; 35: 3417-3424
        • Fletcher S.A.
        • Cronin A.M.
        • Zeidan A.M.
        • Odejide O.O.
        • Gore S.D.
        • Davidoff A.J.
        • et al.
        Intensity of end-of-life care for patients with myelodysplastic syndromes: findings from a large national database.
        Cancer. 2016; 122: 1209-1215
        • LeBlanc T.W.
        • Egan P.C.
        • Olszewski A.J.
        Transfusion dependence, use of hospice services, and quality of end-of-life care in leukemia.
        Blood. 2018; 132: 717-726
        • Dangi-Garimella S.
        QOPI, the ASCO initiative, improves compliance and promotes quality of patient care.
        Am J Manag Care. 2014; 20 (5 Spec No.):E1
        • Zhang B.
        • Nilsson M.E.
        • Prigerson H.G.
        Factors important to patients’ quality of life at the end of life.
        Arch Intern Med. 2012; 172: 1133-1142
        • Hales S.
        • Chiu A.
        • Husain A.
        • Braun M.
        • Rydall A.
        • Gagliese L.
        • et al.
        The quality of dying and death in cancer and its relationship to palliative care and place of death.
        J Pain Symptom Manage. 2014; 48: 839-851
        • Agarwal R.
        • Epstein A.S.
        Advance care planning and end-of-life decision making for patients with cancer.
        Semin Oncol Nurs. 2018; 34: 316-326
        • Freeman A.T.
        • Wood W.A.
        • Fox A.
        • Hanson L.C.
        Access to palliative care consultation and advance care planning for adults with high-risk leukemia.
        J Palliat Med. 2018; 21: 225-228
        • LoCastro M.
        • Baran A.M.
        • Liesveld J.L.
        • Huselton E.
        • Becker M.W.
        • O’Dwyer K.M.
        • et al.
        Portable medical orders and end-of-life measures in acute myeloid leukemia and myelodysplastic syndromes.
        Blood Adv. 2021; 5: 5554-5564
        • Pedraza S.L.
        • Culp S.
        • Knestrick M.
        • Falkenstine E.
        • Moss A.H.
        Association of physician orders for life-sustaining treatment form use with end-of-life care quality metrics in patients with cancer.
        J Oncol Pract. 2017; 13 (e881-e8)
        • Nugent S.M.
        • Slatore C.G.
        • Ganzini L.
        • Golden S.E.
        • Zive D.
        • Vranas K.C.
        • et al.
        POLST registration and associated outcomes among veterans with advanced-stage lung cancer.
        Am J Hosp Palliat Care. 2019; 36: 564-570
        • Odejide O.O.
        • Uno H.
        • Murillo A.
        • Tulsky J.A.
        • Abel G.A.
        Goals of care discussions for patients with blood cancers: association of person, place, and time with end-of-life care utilization.
        Cancer. 2020; 126: 515-522
        • Granek L.
        • Krzyzanowska M.K.
        • Tozer R.
        • Mazzotta P.
        Oncologists’ strategies and barriers to effective communication about the end of life.
        J Oncol Pract. 2013; 9: e129-e135
        • Tang S.T.
        • Chen C.H.
        • Wen F.H.
        • Chen J.S.
        • Chang W.C.
        • Hsieh C.H.
        • et al.
        Accurate prognostic awareness facilitates, whereas better quality of life and more anxiety symptoms hinder end-of-life care discussions: a longitudinal survey study in terminally ill cancer patients’ last six months of life.
        J Pain Symptom Manage. 2018; 55: 1068-1076
        • Mori M.
        • Shimizu C.
        • Ogawa A.
        • Okusaka T.
        • Yoshida S.
        • Morita T.
        A national survey to systematically identify factors associated with oncologists’ attitudes toward end-of-life discussions: what determines timing of end-of-life discussions?.
        Oncologist. 2015; 20: 1304-1311
        • Paasche-Orlow M.
        Caring for patients with limited health literacy: a 76-year-old man with multiple medical problems.
        Jama. 2011; 306: 1122-1129
        • Bhatt V.R.
        • Shostrom V.
        • Armitage J.O.
        • Gundabolu K.
        Treatment patterns and outcomes of octogenarian patients with acute myeloid leukemia.
        Am J Hematol. 2019; 94: E169-e72
        • Klepin H.D.
        • Geiger A.M.
        • Tooze J.A.
        • Kritchevsky S.B.
        • Williamson J.D.
        • Pardee T.S.
        • et al.
        Geriatric assessment predicts survival for older adults receiving induction chemotherapy for acute myelogenous leukemia.
        Blood. 2013; 121: 4287-4294
        • Saad M.
        • Loh K.P.
        • Tooze J.A.
        • Pardee T.S.
        • Ellis L.R.
        • Powell B.L.
        • et al.
        Geriatric assessment and survival among older adults receiving postremission therapy for acute myeloid leukemia.
        Blood. 2020; 136: 2715-2719
        • Klepin H.D.
        • Tooze J.A.
        • Pardee T.S.
        • Ellis L.R.
        • Berenzon D.
        • Mihalko S.L.
        • et al.
        Effect of intensive chemotherapy on physical, cognitive, and emotional health of older adults with acute myeloid leukemia.
        J Am Geriatr Soc. 2016; 64: 1988-1995
        • Dombret H.
        • Seymour J.F.
        • Butrym A.
        • Wierzbowska A.
        • Selleslag D.
        • Jang J.H.
        • et al.
        International phase 3 study of azacitidine vs conventional care regimens in older patients with newly diagnosed AML with >30% blasts.
        Blood. 2015; 126: 291-299
        • Amadori S.
        • Suciu S.
        • Selleslag D.
        • Aversa F.
        • Gaidano G.
        • Musso M.
        • et al.
        Gemtuzumab ozogamicin versus best supportive care in older patients with newly diagnosed acute myeloid leukemia unsuitable for intensive chemotherapy: results of the randomized phase III EORTC-GIMEMA AML-19 trial.
        J Clin Oncol. 2016; 34: 972-979
        • Bengtsson M.
        How to plan and perform a qualitative study using content analysis.
        NursingPlus Open. 2016; 2: 8-14
        • Babchuk W.A.
        Fundamentals of qualitative analysis in family medicine.
        Fam Med Community Health. 2019; 7e000040
        • Sagara Y.
        • Mori M.
        • Yamamoto S.
        • Eguchi K.
        • Iwatani T.
        • Naito Y.
        • et al.
        Current status of advance care planning and end-of-life communication for patients with advanced and metastatic breast cancer.
        Oncologist. 2021; 26 (e686-e93)
        • Spring J.
        • McKinlay J.
        • Puxty K.
        • Metaxa V.
        • Detsky M.
        • Mehta S.
        • et al.
        Perspectives on advance care planning for patients with hematologic malignancy: an international clinician questionnaire.
        Ann Am Thorac Soc. 2021; 18: 1533-1539
        • Cohen M.G.
        • Althouse A.D.
        • Arnold R.M.
        • Bulls H.W.
        • White D.B.
        • Chu E.
        • et al.
        Hope and advance care planning in advanced cancer: is there a relationship?.
        Cancer. 2022; 128: 1339-1345
        • Kubi B.
        • Istl A.C.
        • Lee K.T.
        • Conca-Cheng A.
        • Johnston F.M.
        Advance care planning in Cancer: patient preferences for personnel and timing.
        JCO Oncol Pract. 2020; 16 (e875-e83)
        • Odejide O.O.
        • Cronin A.M.
        • Condron N.B.
        • Fletcher S.A.
        • Earle C.C.
        • Tulsky J.A.
        • et al.
        Barriers to quality end-of-life care for patients with blood cancers.
        J Clin Oncol. 2016; 34: 3126-3132
        • Loh K.P.
        • Abdallah M.
        • Kadambi S.
        • Wells M.
        • Kumar A.J.
        • Mendler J.H.
        • et al.
        Treatment decision-making in acute myeloid leukemia: a qualitative study of older adults and community oncologists.
        Leuk Lymphoma. 2021; 62: 387-398
        • LeBlanc T.W.
        • Fish L.J.
        • Bloom C.T.
        • El-Jawahri A.
        • Davis D.M.
        • Locke S.C.
        • et al.
        Patient experiences of acute myeloid leukemia: a qualitative study about diagnosis, illness understanding, and treatment decision-making.
        Psychooncology. 2017; 26: 2063-2068
        • Bernard C.
        • Tan A.
        • Slaven M.
        • Elston D.
        • Heyland D.K.
        • Howard M.
        Exploring patient-reported barriers to advance care planning in family practice.
        BMC Fam Pract. 2020; 21: 94
        • Watson E.E.
        • Sanapala C.
        • Cortes A.M.
        • Klepin H.D.
        • Wittink M.
        • Norton S.A.
        • et al.
        Adapting a patient-centered communication tool for older patients with acute myeloid leukemia and their oncologist.
        Blood Adv. 2022;
        • Katz M.
        Telehealth increases access to palliative care for people with Parkinson’s disease and related disorders.
        Ann Palliat Med. 2020; 9: S75-s9
        • Myers C.R.
        Using telehealth to remediate rural mental health and healthcare disparities.
        Issues Ment Health Nurs. 2019; 40: 233-239
        • Vijenthira A.
        • Chiu N.
        • Jacobson D.
        • Freedman Z.
        • Cheung M.C.
        • Goddard S.
        • et al.
        Predictors of intensive care unit admission in patients with hematologic malignancy.
        Sci Rep. 2020; 10: 21145
        • Morrison R.S.
        • Meier D.E.
        • Arnold R.M.
        What’s wrong with advance care planning?.
        Jama. 2021; 326: 1575-1576
        • Jacobsen J.
        • Bernacki R.
        • Paladino J.
        Shifting to serious illness communication.
        Jama. 2022; 327: 321-322
        • Smith A.
        Should we shift from advanced care planning to serious illness communication?.
        ([Internet]; 2022 February 24)2022 ([Podcast])
        • Smith A.K.
        • McCarthy E.P.
        • Paulk E.
        • Balboni T.A.
        • Maciejewski P.K.
        • Block S.D.
        • et al.
        Racial and ethnic differences in advance care planning among patients with cancer: impact of terminal illness acknowledgment, religiousness, and treatment preferences.
        J Clin Oncol. 2008; 26: 4131-4137