A novel Family Dignity Intervention (FDI) for enhancing and informing holistic palliative care in Asia: study protocol for a randomized controlled trial

Andy Hau Yan Ho, Josip Car, Moon-Ho Ringo Ho, Geraldine Tan-Ho, Ping Ying Choo, Paul Victor Patinadan, Poh Heng Chong, Wah Ying Ong, Gilbert Fan, Yee Pin Tan, Robert A Neimeyer, Harvey M Chochinov, Andy Hau Yan Ho, Josip Car, Moon-Ho Ringo Ho, Geraldine Tan-Ho, Ping Ying Choo, Paul Victor Patinadan, Poh Heng Chong, Wah Ying Ong, Gilbert Fan, Yee Pin Tan, Robert A Neimeyer, Harvey M Chochinov

Abstract

Background: The lack of a holistic approach to palliative care can lead to a fractured sense of dignity at the end of life, resulting in depression, hopelessness, feelings of being a burden to others, and the loss of the will to live among terminally ill patients. Building on the clinical foundation of Dignity Therapy, together with the empirical understanding of dignity-related concerns of Asian families facing terminal illness, a novel Family Dignity Intervention (FDI) has been developed for Asian palliative care. FDI comprises a recorded interview with a patient and their primary family caregiver, which is transcribed, edited into a legacy document, and returned to the dyads for sharing with the rest of the patient's family. The aims of this study are to assess the feasibility, acceptability and potential effectiveness of FDI in reducing psychosocial, emotional, spiritual, and psychophysiological distress in community-dwelling and in-patient, Asian, older terminally ill patients and their families living in Singapore.

Methods/design: An open-label randomized controlled trial. One hundred and twenty-six patient-family dyads are randomly allocated to one of two groups: (1) an intervention group (FDI offered in addition to standard psychological care) and (2) a control group (standard psychological care). Both quantitative and qualitative outcomes are assessed in face-to-face interviews at baseline, 3 days and 2 weeks after intervention, as well as during an exit interview with family caregivers at 2 months post bereavement. Primary outcome measures include sense of dignity for patients and psychological distress for caregivers. Secondary outcomes include meaning in life, quality of life, spirituality, hopefulness, perceived support, and psychophysiological wellbeing, as well as bereavement outcomes for caregivers. Qualitative data are analyzed using the Framework method.

Discussion: To date, there is no available palliative care intervention for dignity enhancement in Asia. This first-of-its-kind study develops and tests an evidence-based, family driven, psycho-socio-spiritual intervention for enhancing dignity and wellbeing among Asian patients and families facing mortality. It addresses a critical gap in the provision of holistic palliative care. The expected outcomes will contribute to advancements in both theories and practices of palliative care for Singapore and its neighboring regions while serving to inform similar developments in other Asian communities.

Trial registration: ClinicalTrials.gov, ID: NCT03200730 . Registered on 26 June 2017.

Keywords: Asia; Dignity; End-of-life; Family; Palliative care; Psycho-socio-spiritual intervention; Randomized controlled trial.

Conflict of interest statement

Ethics approval and consent to participate

This study has been approved by the Institutional Review Board of Nanyang Technological University Singapore (IRB-2017-02-019). Written informed consent is obtained from all participants before study participation. Participants’ confidentiality is safeguarded under this ethical provision.

Consent for publication

Not applicable

Competing interests

The authors declare that they have no competing interests, and have no affiliation with the software and hardware developer of the HRV measurement device. The brand name of the device is provided to ensure transparency in research methods for repeatability purpose.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
Flow diagram of recruitment and study conduct
Fig. 2
Fig. 2
Schedule of enrollment, intervention, and assessment

References

    1. Hall S, Petkova H, Tsouros AD, Costantini M, Higginson IJ. Palliative care for older people: better practices. Denmark: World Health Organization, WHO Regional Office for Europe; 2011.
    1. Abbey J, Froggatt K, Parker D, Abbey B. Palliative care in long-term care: a system in change. Int J Older People Nurs. 2006;1:56–63. doi: 10.1111/j.1748-3743.2006.00010.x.
    1. Agich GJ. Reflections on the function of dignity in the context of caring for old people. J Med Philos. 2007;32:483–94. doi: 10.1080/03605310701626455.
    1. Bayer T, Tadd W, Krajcik S. Dignity: the voice of older people. Qual Ageing Older Adults. 2005;6:22–9. doi: 10.1108/14717794200500005.
    1. Baillie L, Gallagher A, Wainwright P. Defending dignity—Challenges and opportunities for nursing. Royal College of Nursing: London, UK; 2008.
    1. Guo G, Jacelon CS. An integrative review of dignity in end-of-life care. Palliat Med. 2014;28:931–40. doi: 10.1177/0269216314528399.
    1. Erickson EH. Childhood and society. 2. New York: W.W. Norton and Co.; 1964.
    1. Saunders C. The management of terminal illness. London: Hospital Medicine Publications; 1967.
    1. Conner SR, Sepulveda Bermedo MC, editors. The world atlas of palliative care at the end of life. Geneva: World Health Organization & Worldwide Palliative Care Alliance; 2014.
    1. Marie Curie Foundation . The hidden challenges of palliative care. Scotland: Marie Curie Foundation; 2014.
    1. Chochinov HM, Hack T, McClement S, Kristjanson L, Harlos M. Dignity in the terminally ill: a developing empirical model. Soc Sci Med. 2002;54:433–43. doi: 10.1016/S0277-9536(01)00084-3.
    1. Chochinov HM, Kristjanson L, Hack T, Hassard T, McClement S, Harlos M. Dignity in the terminally ill: revisited. J Palliat Med. 2006;9:666–72. doi: 10.1089/jpm.2006.9.666.
    1. Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement S, Harlos M. Dignity Therapy: a novel psychotherapeutic intervention for patients near the end of life. J Clin Oncol. 2005;23:5520–5. doi: 10.1200/JCO.2005.08.391.
    1. Chochinov HM, Kritjanson LJ, Breitbart W, McClement S, Hack T, Hassard T, Harlos M. The effects of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomized controlled trial. Lancet Oncol. 2011;12:753–62. doi: 10.1016/S1470-2045(11)70153-X.
    1. McClement S, Chochinov HM, Hack T, Hassard T, Kristjanson LJ, Harlos M. Dignity therapy: family member perspectives. J Palliat Med. 2007;10:1076–82. doi: 10.1089/jpm.2007.0002.
    1. Ho AHY, Chan CLW, Leung PPY, Chochinov HM, Neimeyer RA, Pang SMC, Tse DMW. Living and dying with dignity in Chinese society: perspectives of older palliative care patients in Hong Kong. Age Ageing. 2013;42:455–61. doi: 10.1093/ageing/aft003.
    1. Ho AHY, Dai AAN, Lam SH, Wong SWP, Tsui ALM, Tang JCS, Lou VWQ. Development and pilot evaluation of a novel dignity-conserving end-of-life (EoL) care model for nursing homes in Chinese societies. Gerontologist. 2016;56:578–89. doi: 10.1093/geront/gnv037.
    1. Ho AHY, Leung PPY, Tse DMW, Pang SMC, Chochinov HM, Neimeyer RA, Chan CLW. Dignity amidst liminality: suffering within healing among Chinese terminal cancer patients. Death Stud. 2013;37:953–70. doi: 10.1080/07481187.2012.703078.
    1. Chan CLW, Ho AHY, Leung PPY, Chochinov HM, Neimeyer RA, Pang SMC, Tse DMW. The blessing and curses of filial piety on dignity at the end-of-life: lived experience of Hong Kong Chinese adult children caregivers. J Ethn Cult Divers Soc Work. 2012;21:277–96. doi: 10.1080/15313204.2012.729177.
    1. Ho AHY, Chan CLW, Leung PPY. Dignity and quality of life in community palliative care. In: Fong K, Tong KW, editors. Community care in Hong Kong: current practices, practice-research studies and future directions. Hong Kong: City University of Hong Kong Press; 2014. pp. 319–41.
    1. Craig P, Dieppe P., Macintyre S, Michie S, Nazareth I, Petticrew M. Developing and evaluating complex intervention: the new Medical Research Council guidance. BMJ. 2008;337.
    1. Department of Statistics . Population trends 2016. Singapore: Ministry of Trade and Industry, Republic of Singapore; 2016.
    1. Lambert M, Ogles BM. The efficacy and effectiveness of psychotherapy. In: Lambert M, editor. Bergin and Garfield’s handbook of psychotherapy and behavior change. 5. New York: Wiley; 2004. pp. 139–93.
    1. Schag CC, Heinrich RL, Ganz PA. Karnofsky performance status revisited: Reliability, validity, and guidelines. J Clin Oncology. 1984;2:187–93.
    1. Folstein M, Folstein SE, McHugh PR. “Mini-Mental State” a practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res. 1975;12:189–98. doi: 10.1016/0022-3956(75)90026-6.
    1. Hall S, Longhurst S, Higginson I. Living and dying with dignity: A qualitative study of the views of older people in nursing homes. Age Ageing. 2009;38:411–6. doi: 10.1093/ageing/afp069.
    1. Chochinov HM, Hassard T, McClement S, Hack T, Kristjanson LJ, Harlos M, Sinclair S, Murray A. The Patient Dignity Inventory: a novel way of measuring dignity related distress in palliative care. J Pain Symptom Manage. 2008;36:559–71. doi: 10.1016/j.jpainsymman.2007.12.018.
    1. Spitzer RL, Williams JB, Kroenke K. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med. 2001;16:606–13. doi: 10.1046/j.1525-1497.2001.016009606.x.
    1. Chan THY, Ho RTH, Chan CLW. Developing an outcome measure for meaning-making intervention with Chinese cancer patients. Psychooncology. 2007;16:843–50. doi: 10.1002/pon.1134.
    1. Power M. Development of a common instrument for quality of life. In: Nosikov A, Cudex C, editors. EUROHIS: developing common instruments for health surveys. Amsterdam: IOS Press; 2003. pp. 145–63.
    1. Peterman AH, Fitchett G, Brady M, Hernandez L, Cella D. Measuring spiritual well-being in people with cancer: the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp) Ann Behav Med. 2002;24:49–58. doi: 10.1207/S15324796ABM2401_06.
    1. Herth K. Fostering hope in terminally ill people. J Adv Nurs. 1990;15:1250–9. doi: 10.1111/j.1365-2648.1990.tb01740.x.
    1. Hogan NS, Schmidt LA. Testing the grief to personal growth model using structural equation modeling. Death Stud. 2002;26:615–34. doi: 10.1080/07481180290088338.
    1. Ito M, Nakajima S, Fujisawa D, Miyashita M, Kim Y, Sheer K, Ghesquiere A, Wall M. Brief measure for screening complicated grief: reliability and discriminant validity. PLoS One. 2012;7:e31209.
    1. Burnett PC, Middleton W, Raphael B, Martinek N. Measuring core bereavement phenomena. Psychol Med. 1997;27:49–57. doi: 10.1017/S0033291796004151.
    1. Strack BW. Biofeedback and neurofeedback applications in sport psychology: introduction. In: Strack BM, Linden MK, Wilson VS, editors. Biofeedback and neurofeedback applications in sport psychology. Wheat Ridge: Association for Applied Psychophysiology and Biofeedback; 2011.
    1. Wheat AL, Larkin KT. Biofeedback of heart rate variability and related physiology: a critical review. Appl Psychophysiol Biofeedback. 2010;35:229–42. doi: 10.1007/s10484-010-9133-y.
    1. ithlete. ithlete finger sensor. 2017. . Accessed 24 June 2017.
    1. Ritchie J, Spencer E. Qualitative data analysis for applied policy research. In: Bryman A, Burgess RG, editors. Analyzing qualitative data. London: Routledge; 1993.
    1. Lien Centre for Palliative Care . Report on the National Strategy for Palliative Care. Singapore: Duke-NUS Graduate Medical School; 2011.
    1. World Bank . Live long and prosper: aging in East Asia and Pacific. Washington, DC: World Bank; 2016.
    1. Scott AM, Caughlin JP. Managing multiple goals in family discourse about end-of-life health decisions. Res Aging. 2012;24:670–91. doi: 10.1177/0164027512446942.
    1. National Medical Ethics Committee. In: Guide for healthcare professionals on the ethical handling of communication in advance care planning. Ministry of Health; 2010. . Accessed 24 Jun 2017.
    1. Foo JY. Planning for death: still not easy to talk about taboo issue. In: The New Paper. 2017. . Accessed 24 Jun 2017.

Source: PubMed

Sponsoren und Mitarbeiter

Krankheiten

Drogeninterventionen

3
Abonnieren