Development and evaluation of the Dignity Talk question framework for palliative patients and their families: A mixed-methods study

Qiaohong Guo, Harvey Max Chochinov, Susan McClement, Genevieve Thompson, Tom Hack, Qiaohong Guo, Harvey Max Chochinov, Susan McClement, Genevieve Thompson, Tom Hack

Abstract

Background: Effective patient-family communication can reduce patients' psychosocial distress and relieve family members' current suffering and their subsequent grief. However, terminally ill patients and their family members often experience great difficulty in communicating their true feelings, concerns, and needs to each other.

Aim: To develop a novel means of facilitating meaningful conversations for palliative patients and family members, coined Dignity Talk, explore anticipated benefits and challenges of using Dignity Talk, and solicit suggestions for protocol improvement.

Design: A convergent parallel mixed-methods design. Dignity Talk, a self-administered question list, was designed to prompt end-of-life conversations, adapted from the Dignity Therapy question framework. Participants were surveyed to evaluate the Dignity Talk question framework. Data were analyzed using qualitative and quantitative methods.

Setting/participants: A total of 20 palliative patients, 20 family members, and 34 healthcare providers were recruited from two inpatient palliative care units in Winnipeg, Canada.

Results: Most Dignity Talk questions were endorsed by the majority of patients and families (>70%). Dignity Talk was revised to be convenient and flexible to use, broadly accessible, clearly stated, and sensitively worded. Participants felt Dignity Talk would be valuable in promoting conversations, enhancing family connections and relationships, enhancing patient sense of value and dignity, promoting effective interaction, and attending to unfinished business. Participants suggested that patients and family members be given latitude to respond only to questions that are meaningful to them and within their emotional capacity to broach.

Conclusion: Dignity Talk may provide a gentle means of facilitating important end-of-life conversations.

Trial registration: ClinicalTrials.gov NCT01883375.

Keywords: Dignity talk; communication; family members; mixed methods; palliative care; palliative patients.

Conflict of interest statement

Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

References

    1. Chochinov HM. Dying, dignity, and new horizons in palliative end-of-life care. CA Cancer J Clin 2006; 56: 84–103.
    1. Chochinov HM, Hassard T, McClement S, et al. The landscape of distress in the terminally ill. J Pain Symptom Manage 2009; 38: 641–649.
    1. Kristjanson LJ, Aoun S. Palliative care for families: remembering the hidden patients. Can J Psychiatry 2004; 49: 359–365.
    1. Zhang AY, Siminoff LA. Silence and cancer: why do families and patients fail to communicate? Health Commun 2003; 15: 415–429.
    1. Lin HR, Bauer-Wu SM. Psycho-spiritual well-being in patients with advanced cancer: an integrative review of the literature. J Adv Nurs 2003; 44: 69–80.
    1. Salander P, Spetz A. How do patients and spouses deal with the serious facts of malignant glioma? Palliat Med 2002; 16: 305–313.
    1. Braithwaite M, Philip J, Tranberg H, et al. End of life care in CF: patients, families and staff experiences and unmet needs. J Cyst Fibros 2011; 10: 253–257.
    1. Duke S. An exploration of anticipatory grief: the lived experience of people during their spouses’ terminal illness and in bereavement. J Adv Nurs 1998; 28: 829–839.
    1. Kehl KA, Kirchhoff KT, Kramer BJ, et al. Challenges facing families at the end of life in three settings. J Soc Work End Life Palliat Care 2009; 5: 144–168.
    1. Dumont I, Dumont S, Mongeau S. End-of-life care and the grieving process: family caregivers who have experienced the loss of a terminal-phase cancer patient. Qual Health Res 2008; 18: 1049–1061.
    1. Brown R, Butow PN, Boyer MJ, et al. Promoting patient participation in the cancer consultation: evaluation of a prompt sheet and coaching in question-asking. Br J Cancer 1999; 80: 242–248.
    1. Kahana E, Kahana B. Patient proactivity enhancing doctor–patient–family communication in cancer prevention and care among the aged. Patient Educ Couns 2003; 50: 67–73.
    1. Butow PN, Dunn SM, Tattersall MH, et al. Patient participation in the cancer consultation: evaluation of a question prompt sheet. Ann Oncol 1994; 5: 199–204.
    1. Walczak A, Mazer B, Butow PN, et al. A question prompt list for patients with advanced cancer in the final year of life: development and cross-cultural evaluation. Palliat Med 2013; 27: 779–788.
    1. Butow PN, Devine R, Boyer M, et al. Cancer consultation preparation package: changing patients but not physicians is not enough. J Clin Oncol 2004; 22: 4401–4409.
    1. Schwartz C, Merriman MP, Reed G, et al. Evaluation of the Missoula–VITAS Quality of Life Index-revised: research tool or clinical tool? J Palliat Med 2005; 8: 121–135.
    1. Brown R, Butow PN, Dunn SM, et al. Promoting patient participation and shortening cancer consultations: a randomised trial. Br J Cancer 2001; 85: 1273–1279.
    1. Bruera E, Sweeney C, Willey J, et al. Breast cancer patient perception of the helpfulness of a prompt sheet versus a general information sheet during outpatient consultation: a randomized, controlled trial. J Pain Symptom Manage 2003; 25: 412–421.
    1. Clayton JM, Butow PN, Tattersall MH, et al. Randomized controlled trial of a prompt list to help advanced cancer patients and their caregivers to ask questions about prognosis and end-of-life care. J Clin Oncol 2007; 25: 715–723.
    1. Glynne-Jones R, Ostler P, Lumley-Graybow S, et al. Can I look at my list? An evaluation of a “prompt sheet” within an oncology outpatient clinic. Clin Oncol 2006; 18: 395–400.
    1. Hebert RS, Schulz R, Copeland VC, et al. Pilot testing of a question prompt sheet to encourage family caregivers of cancer patients and physicians to discuss end-of-life issues. Am J Hosp Palliat Med 2009; 26: 24–32.
    1. Walczak A, Henselmans I, Tattersall MH, et al. A qualitative analysis of responses to a question prompt list and prognosis and end-of-life care discussion prompts delivered in a communication support program. Psychooncology 2015; 24: 287–293.
    1. Bernacki R, Hutchings M, Vick J, et al. Development of the Serious Illness Care Program: a randomised controlled trial of a palliative care communication intervention. BMJ Open 2015; 5: e009032.
    1. Mowll J, Lobb EA, Lane L, et al. A preliminary study to develop an intervention to facilitate communication between couples in advanced cancer. Palliat Support Care 2015; 13: 1381–1390.
    1. Murray C, McDonald C, Atkin H. The communication experiences of patients with palliative care needs: a systematic review and meta synthesis of qualitative findings. Palliat Support Care 2015; 13: 369–383.
    1. Kutner JS, Kilbourn KM. Bereavement: addressing challenges faced by advanced cancer patients, their caregivers, and their physicians. Prim Care 2009; 36: 825–844.
    1. Chochinov HM, Hack T, Hassard T, et al. Dignity therapy: a novel psychotherapeutic intervention for patients near the end of life. J Clin Oncol 2005; 23: 5520–5525.
    1. Creswell JW, Plano Clark VL. Designing and conducting mixed methods research, 2nd ed. Thousand Oaks, CA: SAGE, 2011.
    1. Strauss AL, Corbin JM. Basics of qualitative research: techniques and procedures for developing grounded theory, 2nd ed. Thousand Oaks, CA: SAGE, 1998.
    1. Exline JJ, Prince-Paul M, Root BL, et al. Forgiveness, depressive symptoms, and communication at the end of life: a study with family members of hospice patients. J Palliat Med 2012; 15: 1113–1119.
    1. Steinhauser KE, Alexander SC, Byock IR, et al. Seriously ill patients’ discussions of preparation and life completion: an intervention to assist with transition at the end of life. Palliat Support Care 2009; 7: 393–404.
    1. Steinhauser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 2000; 284: 2476–2482.
    1. Roberts KJ, Lepore SJ, Helgeson V. Social-cognitive correlates of adjustment to prostate cancer. Psychooncology 2006; 15: 183–192.
    1. Milberg A, Strang P, Jakobsson M. Next of kin’s experience of powerlessness and helplessness in palliative home care. Support Care Cancer 2004; 12: 120–128.
    1. Andershed B, Ternestedt BM. Development of a theoretical framework describing relatives’ involvement in palliative care. J Adv Nurs 2001; 34: 554–562.
    1. Harding R, List S, Epiphaniou E, et al. How can informal caregivers in cancer and palliative care be supported? An updated systematic literature review of interventions and their effectiveness. Palliat Med 2012; 26: 7–22.

Source: PubMed

Sponsors and Collaborators

Medical Conditions

Drug Interventions

3
Subscribe