Hostname: page-component-78c5997874-4rdpn Total loading time: 0 Render date: 2024-11-13T07:13:23.681Z Has data issue: false hasContentIssue false
  • English
  • Français

Addressing personal barriers to advance care planning: Qualitative investigation of a mindfulness-based intervention for adults with cancer and their family caregivers

Published online by Cambridge University Press:  08 June 2018

Ann H. Cottingham ,
Kathleen Beck-Coon ,
Jennifer K. Bernat ,
Paul R. Helft ,
Karen Schmidt ,
Cleveland G. Shields ,
Alexia M. Torke  and
Shelley A. Johns
Ann H. Cottingham*
Affiliation:
Indiana University School of Medicine, Indianapolis, IN Regenstrief Institute, Inc., Indianapolis, IN
Kathleen Beck-Coon
Affiliation:
Indiana University School of Medicine, Indianapolis, IN Indiana University School of Nursing, Indianapolis, IN
Jennifer K. Bernat
Affiliation:
Indiana University School of Nursing, Indianapolis, IN
Paul R. Helft
Affiliation:
Indiana University School of Medicine, Indianapolis, IN Indiana University Melvin and Bren Simon Cancer Center, Indianapolis, IN Charles Warren Fairbanks Center for Medical Ethics, IU Health, Indianapolis, IN Research in Palliative and End of Life Communication and Training (RESPECT) Center, Indiana University-Purdue University Indianapolis, Indianapolis, IN
Karen Schmidt
Affiliation:
Indiana University School of Medicine, Indianapolis, IN
Cleveland G. Shields
Affiliation:
Purdue University, West Lafayette, IN
Alexia M. Torke
Affiliation:
Indiana University School of Medicine, Indianapolis, IN Charles Warren Fairbanks Center for Medical Ethics, IU Health, Indianapolis, IN Research in Palliative and End of Life Communication and Training (RESPECT) Center, Indiana University-Purdue University Indianapolis, Indianapolis, IN Indiana University Center for Aging Research, Regenstrief Institute, Inc., Indianapolis, IN Daniel F. Evans Center for Spiritual and Religious Values in Health Care, IU Health, Indianapolis, IN
Shelley A. Johns
Affiliation:
Indiana University School of Medicine, Indianapolis, IN Regenstrief Institute, Inc., Indianapolis, IN Charles Warren Fairbanks Center for Medical Ethics, IU Health, Indianapolis, IN Research in Palliative and End of Life Communication and Training (RESPECT) Center, Indiana University-Purdue University Indianapolis, Indianapolis, IN
*
Author for correspondence: Ann H. Cottingham, Regenstrief Institute, Inc., 1101 West Tenth Street RF-239, Indianapolis, IN 46202. E-mail: ancottin@iu.edu
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

Advance care planning (ACP) increases quality of life and satisfaction with care for those with cancer and their families, yet these important conversations often do not occur. Barriers include patients’ and families’ emotional responses to cancer, such as anxiety and sadness, which can lead to avoidance of discussing illness-related topics such as ACP. Interventions that address psychological barriers to ACP are needed. The purpose of this study was to explore the effects of a mindfulness intervention designed to cultivate patient and caregiver emotional and relational capacity to respond to the challenges of cancer with greater ease, potentially decreasing psychological barriers to ACP and enhancing ACP engagement.

Method

The Mindfully Optimizing Delivery of End-of-Life (MODEL) Care intervention provided 12 hours of experiential training to two cohorts of six to seven adults with advanced-stage cancer and their family caregivers (n = 13 dyads). Training included mindfulness practices, mindful communication skills development, and information about ACP. Patient and caregiver experiences of the MODEL Care program were assessed using semistructured interviews administered immediately postintervention and open-ended survey questions delivered immediately and at 4 weeks postintervention. Responses were analyzed using qualitative methods.

Result

Four salient themes were identified. Patients and caregivers reported the intervention (1) enhanced adaptive coping practices, (2) lowered emotional reactivity, (3) strengthened relationships, and (4) improved communication, including communication about their disease.

Significance of results

The MODEL Care intervention enhanced patient and caregiver capacity to respond to the emotional challenges that often accompany advanced cancer and decreased patient and caregiver psychological barriers to ACP.

Keywords

Cancermindfulnessadvance care planningcaregiverscoping
Type
Original Article
Information
Palliative & Supportive Care , Volume 17 , Issue 3 , June 2019 , pp. 276 - 285
Copyright
Copyright © Cambridge University Press 2018 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Agledahl, KM, et al. (2011) Courteous but not curious: how doctors' politeness masks their existential neglect. A qualitative study of video-recorded patient consultations. Journal of Medical Ethics 37(11), 650–654.Google Scholar
An, E, et al. (2017) Death talk and relief of death-related distress in patients with advanced cancer. BMJ Supportive & Palliative Care. Epub ahead of print Aug 2, 2017.Google Scholar
Baer, RA (2003) Mindfulness training as a clinical intervention: A conceptual and empirical review. Clinical Psychology Science and Practice 10:125–143.10.1093/clipsy.bpg015Google Scholar
Barnes, S, et al. (2007) The role of mindfulness in romantic relationship satisfaction and responses to relationship stress. Journal of Marital and Family Therapy 33(4), 482–500.10.1111/j.1752-0606.2007.00033.xGoogle Scholar
Bishop, SR, et al. (2004) Mindfulness: A proposed operational definition. Clinical Psychology: Science and Practice 11, 230–241.Google Scholar
Borkan, J (1999) Immersion/crystallization. In Doing qualitative research. Crabtree, BF, Miller, WL (eds.). Thousand Oaks, CA: Sage Publications.Google Scholar
Breitbart, W (2002) Spirituality and meaning in supportive care: Spirituality-and meaning-centered group psychotherapy interventions in advanced cancer. Supportive Care in Cancer 10(4), 272–280.10.1007/s005200100289Google Scholar
Breitbart, W, et al. (2015) Meaning-centered group psychotherapy for patients with advanced cancer: A pilot randomized controlled trial. Psycho-Oncology 19(1), 21–28.10.1002/pon.1556Google Scholar
Breitbart, W, et al. (2010) Meaning-centered group psychotherapy: An effective intervention for improving psychological well-being in patients with advanced cancer. Journal of Clinical Oncology 33(7), 749–754.10.1200/JCO.2014.57.2198Google Scholar
Brinkman-Stoppelenburg, A, Rietjens, JA, and van der Heide, A (2014) The effects of advance care planning on end-of-life care: A systematic review. Palliative Medicine 28(8), 1000–1025.10.1177/0269216314526272Google Scholar
Cahn, BR and Polich, J (2009) Meditation (Vipassana) and the P3a event-related brain potential. International Journal of Psychophysiology 72(1), 51–60. doi:10.1016/j.ijpsycho.2008.03.013Google Scholar
Carmody, J and Bae, RA (2008) Relationships between mindfulness practice and levels of mindfulness, medical and psychological symptoms and well-being in a mindfulness-based stress reduction program. Journal of Behavioral Medicine 31(1), 23–33.Google Scholar
Coffey, KA and Hartman, M (2008) Mechanisms of action in the inverse relationship between mindfulness and psychological distress. Complementary Health Practice Review 13(2), 79–91.Google Scholar
The Conversation Project (2016) Let's talk. Begin your conversation today Available from http://theconversationproject.org/.Google Scholar
Corcoran, KM, et al. (2009) Mindfulness and emotion regulation. Emotion Regulation and Psychopathology 339–355.Google Scholar
Davis, D M and Hayes, JA (2011) What are the benefits of mindfulness? A practice review of psychotherapy-related research. Psychotherapy 48(2), 198–208.Google Scholar
Detering, KM, et al. (2010) The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 340, c1345.Google Scholar
Dev, S, et al. (2012) Preferences of people with advanced heart failure-a structured narrative literature review to inform decision making in the palliative care setting. American Heart Journal 164(3), 313–319.Google Scholar
Farb, NA, et al. (2010) Minding one's emotions: Mindfulness training alters the neural expression of sadness. Emotion 10(1), 25–33.10.1037/a0017151Google Scholar
Ferrell, BR, et al. (2017) Integration of palliative care into standard oncology care: American Society of Clinical Oncology clinical practice guideline update. Journal of Clinical Oncology 35(1), 96–112.10.1200/JCO.2016.70.1474Google Scholar
Foster, C, et al. (2015) ‘You can't say, “what about me?” I'm not the one with cancer’: information and support needs of relatives. Psycho-Oncology 24(6), 705–711.Google Scholar
Gambrel, LE and Keeling, ML (2010) Relational aspects of mindfulness: Implications for the practice of marriage and family therapy. Contemporary Family Therapy 32(4), 412–426.Google Scholar
Generous, MA and Keeley, M (2017) Wished for and avoided conversations with terminally ill individuals during final conversations. Death Studies 41(3), 162–172.Google Scholar
Glaser, BG and Strauss, AL (1967) The discovery of grounded theory: Strategies for qualitative research. New York: Routledge.Google Scholar
Greutmann, M, et al. (2013). Facilitators of and barriers to advance care planning in adult congenital heart disease. Congenital Heart Disease 8(4), 281–288.10.1111/chd.12025Google Scholar
Gundersen Health System (2016) Respecting Choices® Advance Care Planning. Available from http://www.gundersenhealth.org/respecting-choicesGoogle Scholar
Heyland, DK, et al. (2013) Failure to engage hospitalized elderly patients and their families in advance care planning. JAMA Internal Medicine 173(9), 778–787.Google Scholar
Hoerger, M, et al. (2013) Values and options in cancer care (VOICE): Study design and rationale for a patient-centered communication and decision-making intervention for physicians, patients with advanced cancer, and their caregivers. BMC Cancer 13, 188.Google Scholar
Institute of Medicine (2014). Dying in America. Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press.Google Scholar
Johns, SA, et al. (2014) Impact of mindfulness training on avoidant coping and advance care planning among adults with incurable cancer and family caregivers. Poster presented at American Society of Clinical Oncology Palliative Care Symposium, Boston, MA. Journal of Clinical Oncology 32(suppl 31), abstract 86.Google Scholar
Jones, KC, et al. (2011) Mindfulness, spousal attachment, and marital satisfaction: A mediated model. The Family Journal 19(4), 357–361.Google Scholar
Kabat-Zinn, J (2003) Mindfulness-based interventions in context: Past, present, and future. Clinical Psychology: Science and Practice 10(2), 144–156.Google Scholar
Keating, NL, et al. (2010) Physician factors associated with discussions about end-of-life care. Cancer 116(4), 998–1006.Google Scholar
Khan, SA, Gomes, B, and Higginson, IJ (2014) End-of-life care—what do cancer patients want? Nature Reviews Clinical Oncology 11(2), 100–108.Google Scholar
Kramer, G (2007) Insight dialogue: The interpersonal path to freedom. Boston: Shambhala.Google Scholar
Levi, BH, et al. (2010) What influences individuals to engage in advance care planning? American Journal of Hospice and Palliative Medicine 27(5), 306–312.10.1177/1049909109355280Google Scholar
Levy, M, et al. (2016) Palliative Care Version 1.2016. Journal of the National Comprehensive Cancer Network 14(1), 82–113.Google Scholar
Lo, C, et al. (2016) Managing Cancer and Living Meaningfully (CALM): Randomised feasibility trial in patients with advanced cancer. BMJ Supportive & Palliative Care 16(931).Google Scholar
Lo, C, et al. (2014) Managing Cancer And Living Meaningfully (CALM): Phase 2 trial of a brief individual psychotherapy for patients with advanced cancer. Palliative Medicine 28(3), 234–242.Google Scholar
Lo, C, et al. (2015) Managing Cancer And Living Meaningfully: Study protocol for a randomized controlled trial. Trials 16(391).Google Scholar
Mesters, I, et al. (1997) Openness to discuss cancer in the nuclear family: Scale, development, and validation. Psychosomatic Medicine 59(3), 269–279.Google Scholar
Miljkovic, MD, et al. (2015) “Allow natural death” versus “do not resuscitate”: What do patients with advanced cancer choose? Journal of Palliative Medicine 18(5), 457–460.10.1089/jpm.2014.0369Google Scholar
Moss, AH, Lunney, JR, Culp, S, et al. (2010) Prognostic significance of the “surprise” question in cancer patients. Journal of Palliative Medicine 13(7), 837–840.Google Scholar
Narang, AK, Wright, AA, and Nicholas, LH (2015) Trends in advance care planning in patients with cancer: Results from a national longitudinal survey. JAMA Oncology 1(5), 601–608.Google Scholar
Nelson, JE, et al. (2011) Patients rate physician communication about lung cancer. Cancer 117(22), 5212–5220.Google Scholar
Nissim, R, et al. (2012) Managing Cancer and Living Meaningfully (CALM): A qualitative study of a brief individual psychotherapy for individuals with advanced cancer. Palliative Medicine 26(5) 713–721.Google Scholar
Northouse, PG and Northouse, LL (1988) Communication and cancer: Issues confronting patients, health professionals, and family members. Journal of Psychosocial Oncology 5(3), 17–46.Google Scholar
Patlak, M, Balogh, E, Nass, S, and National Cancer Policy Forum, Board on Health Care Services, & Institute of Medicine (2011) Patient-centered cancer treatment planning: Improving the quality of oncology care: Workshop Summary (2011). Washington, DC: National Academies Press.Google Scholar
Peppercorn, JM, et al. (2011) American Society of Clinical Oncology statement: Toward individualized care for patients with advanced cancer. Journal of Clinical Oncology 29(6), 755–760.Google Scholar
Regents of the University of California (2012) Prepare. Available from https://prepareforyourcare.org/pageGoogle Scholar
Robinson, TM, et al. (2008) Patient-oncologist communication in advanced cancer: Predictors of patient perception of prognosis. Support Care Cancer 16(9), 1049–1057.Google Scholar
Santorelli, S and Kabat-Zinn, J (eds.) (2013).Mindfulness-based Stress Reduction Professional Education and Training Resource Manual: MBSR Standards of Practice, Curriculum, and Supporting Materials, Revised March 2013 edition. Shrewsbury, MA: Center for Mindfulness in Medicine, Health Care, and Society.Google Scholar
Schickedanz, AD, et al. (2009) A clinical framework for improving the advance care planning process: Start with patients' self-identified barriers. Journal of the American Geriatrics Society 57(1), 31–39.Google Scholar
Schwartz, C, et al. (2003) Honing an advance care planning intervention using qualitative analysis: The Living Well interview. Journal of Palliative Medicine 6(4), 593–603.Google Scholar
Silveira, MJ, Kim, SY, and Langa, KM (2010) Advance directives and outcomes of surrogate decision making before death. The New England Journal of Medicine 362(13), 1211–1218.Google Scholar
Simon, J, et al. (2015) ‘Not yet’ and ‘Just ask’: barriers and facilitators to advance care planning--a qualitative descriptive study of the perspectives of seriously ill, older patients and their families. BMJ Support Palliat Care 5(1), 54–62. 7Google Scholar
Sorrell, JM (2018) End-of-life conversations as a legacy. Journal of Psychosocial Nursing Mental Health Services 56(1), 32–35.Google Scholar
Sudore, RL, et al. (2017) Defining advance care planning for adults: A consensus definition from a multidisciplinary delphi panel. Journal of Pain and Symptom Management 53(5):821–832.Google Scholar
Sudore, RL, et al. (2008) Engagement in multiple steps of the advance care planning process: A descriptive study of diverse older adults. Journal of the American Geriatrics Society 56(6), 1006–1013.Google Scholar
Tang, Y, Hölzel, BK, and Posner, MI (2015) The neuroscience of mindfulness meditation. Nature Reviews Neuroscience 16(4), 213–225.Google Scholar
Taylor, SJ and Bogdan, R (1998). Introduction to qualitative research methods: A guidebook and resource (3rd ed.). New York: John Wiley & Sons.Google Scholar
Teno, JM, et al. (2007) Association between advance directives and quality of end-of-life care: A national study. Journal of the American Geriatrics Society 55(2), 189–194.Google Scholar
Teper, R, Segal, ZV, and Inzlicht, M (2013) Inside the mindful mind how mindfulness enhances emotion regulation through improvements in executive control. Current Directions in Psychological Science 22(6), 449–454.10.1177/0963721413495869Google Scholar
The Center for Contemplative Mind in Society. Loving-kindness meditation. Available from http://www.contemplativemind.org/practices/tree/loving-kindness.Google Scholar
Tobler, D, et al. (2012) Knowledge of and preference for advance care planning by adults with congenital heart disease. American Journal of Cardiology 109(12), 1797–1800.Google Scholar
Tschirhart, EC, Du, Q, and Kelley, AS (2014) Factors influencing the use of intensive procedures at the end of life. Journal of the American Geriatrics Society 62(11), 2088–2094.Google Scholar
Tulsky, JA, et al. (1998) Opening the black box: how do physicians communicate about advance directives? Annals of Internal Medicine 129(6), 441–449.Google Scholar
Wagner, EH, et al. (2010) The quality of cancer patient experience: Perspectives of patients, family members, providers and experts. Quality and Safety in Health Care 19(6), 484–489.Google Scholar
Weir, HK, et al. (2015) Meeting the Healthy People 2020 objectives to reduce cancer mortality. Preventing Chronic Disease 12, E104.Google Scholar
Winter, L (2013) Patient values and preferences for end-of-life treatments: Are values better predictors than a living will? Journal of Palliative Medicine 16(4), 362–368.Google Scholar
Wright, AA, et al. (2008) Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA 300(14), 1665–1673.Google Scholar
Zeng, X, et al. (2015) The effect of loving-kindness meditation on positive emotions: A meta-analytic review. Frontiers in Psychology 6(1693).Google Scholar