Expanding the Palliative Care Domains to Meet the Needs of a Community-Based Supportive Care Model

Eric W Anderson, Monica S Frazer, Sandra E Schellinger, Eric W Anderson, Monica S Frazer, Sandra E Schellinger

Abstract

Background: Whole person care is appropriate for seriously ill persons. The current framework of palliative care domains in the National Consensus Project (NCP) Guidelines for Quality Palliative Care offers an opportunity to reassess the domains of care delivered at home, earlier in the course of illness.

Objective: This qualitative study was used to test the applicability of a proposed, expanded set of domains. The results were used to inform a home-based, upstream model of supportive care for serious illness.

Methods: Quotes relating to the experience of late-life serious illness were derived from transcripts of 12 semi-structured group interviews conducted with patients, family, and professionals. Quotes originally coded to the NCP domains of palliative care were then coded to the proposed domain set, which included new categories of family/caregiver, legal/financial, and legacy/bereavement domains.

Results: A total of 489 quotes were assigned to the proposed expanded set of domains. One hundred one (19%) coded to the family/caregiver domain, 28 (5%) to the legacy/bereavement domain, and 27 (5%) to the legal/financial domain. Ninety-seven (87%) of the 111 quotes coded to family/caregiver had been initially coded to the NCP social aspects of care. Family/caregiver themes included challenges, rewards, insights, and family growth.

Conclusion: The preponderance of family-related issues suggests that including the family domain may promote recognition and support of family caregivers and the services they provide. Although this study provides some support for including the legacy/bereavement and legal/financial domains, additional research is needed to determine whether there is a basis for including them in the domain structure.

Keywords: National Consensus Project; domains; guidelines; lay health-care worker; palliative; whole person.

Conflict of interest statement

Declaration of Conflicting Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

References

    1. Kearney M. A Place of Healing: Working with Nature and Soul at the End of Life. New Orleans, LA: Spring Journal Books; 2009.
    1. Mount B, Kearney M. Healing and palliative care: charting our way forward. Palliat Med. 2003;17(8):657–658.
    1. Hutchinson TA. Whole Person Care: A New Paradigm for the 21st Century. New York, NY: Springer; 2011.
    1. American Academy of Family Practice. Continuity of Care, Definition of 2015. . Accessed 6 April 2017.
    1. Boyd C, McNabney M, Brandt N, et al. Guiding principles for the care of older adults with multimorbidity: an approach for clinicians: American Geriatrics Society Expert Panel on the Care of Older Adults with Multimorbidity. J Am Geriatr Soc. 2012;60(10):E1–E25.
    1. Cassel C, Katherine F. Principles for Care of Patients at the End of Life: An Emerging Consensus Among the Specialties of Medicine. Milbank Memorial Fund, New York, NY; 1999.
    1. National Quality Forum. A National Framework and Preferred Practices for Palliative and Hospice Care Quality. Washington, DC: National Quality Forum; 2006.
    1. National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care. 2nd ed Pittsburgh, PA: National Consensus Project for Quality Palliative Care; 2009.
    1. National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care. 3rd ed Pittsburgh, PA: National Consensus Project for Quality Palliative Care; 2013.
    1. Lynn J. Measuring quality of care at the end of life: a statement of principles. J Am Geriatr Soc. 1997;45(4):526–527.
    1. National Comprehensive Cancer Network. NCCN Guidelines for Palliative Care V1.2015, . Accessed 12 December 2015.
    1. Emanuel EJ, Emanuel LL. The promise of a good death. Lancet. 1998;351(suppl 2):SII21–SII29.
    1. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284(19):2476–2482.
    1. Ferrell BR. Overview of the domains of variables relevant to end-of-life care. J Palliat Med. 2005;8(suppl 1):S22–S29.
    1. Altilio T, Otis-Green S, Dahlin CM. Applying the national quality forum preferred practices for palliative and hospice care: a social work perspective. J Soc Work End Life Palliat Care. 2008;4(1):3–16.
    1. Bruera E, Kuehn N, Miller MJ, Selmser P, Macmillan K. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care. 1991;7(2):6–9.
    1. Opasich C, Gualco A, De Feo S, et al. Physical and emotional symptom burden of patients with end-stage heart failure: what to measure, how and why. J Cardiovasc Med. 2008;9(11):1104–1108.
    1. Tovar EG, Dekker RL, Chung ML, et al. Self-efficacy mediates the relationship of depressive symptoms and social support with adherence in patients with heart failure [published online May 18 2015]. J Health Psychol.
    1. Murray SA, Boyd K, Kendall M, Worth A, Benton TF, Clausen H. Dying of lung cancer or cardiac failure: prospective qualitative interview study of patients and their carers in the community. BMJ. 2002;325(7370):929.
    1. Hegarty MM, Abernethy AP, Olver I, Currow DC. Former palliative caregivers who identify that additional spiritual support would have been helpful in a population survey. Palliat Med. 2011;25(3):266–277.
    1. Cassel EJ. The Nature of Suffering and the Goals of Medicine. 2nd ed New York, NY: Oxford University Press; 2004.
    1. Anderson EW, Schellinger SE. Upstream adventures: initial results from a clinical trial of early palliative care, delivered in the community by trained lay persons. Paper presented at: American Academy of Hospice and Palliative Medicine Annual Assembly; March 2016; Chicago, IL.
    1. Adair R, Wholey DR, Christianson J, White KM, Britt H, Lee S. Improving chronic disease care by adding laypersons to the primary care team: a parallel randomized trial. Ann Intern Med. 2013;159(3):176–184.
    1. Saldaña J. The Coding Manual for Qualitative Researchers. Thousand Oaks, California: Sage; 2012.
    1. NVivo qualitative data analysis software [computer program]. Version 102012.
    1. Sandelowski M, Voils CI, Knafl G. On quantitizing. J Mix Methods Res. 2009;3(3):208–222.
    1. Bookwala J. The impact of parent care on marital quality and well-being in adult daughters and sons. J Gerontol B Psychol Sci Soc Sci. 2009; 64(3):339–347.
    1. Navaie-Waliser M, Spriggs A, Feldman PH. Informal caregiving: differential experiences by gender. Med care. 2002;40(12):1249–1259.
    1. Reinhard SC, Levine C, Samis S. Family Caregivers Providing Complex Chronic Care to Their Spouses. Washington, DC: AARP Public Policy Institute; 2014.
    1. Douglas SL, Mazanec P, Lipson A, Leuchtag M. Distance caregiving a family member with cancer: a review of the literature on distance caregiving and recommendations for future research. World J Clin Oncol. 2016;7(2):214–219.
    1. National Alliance for Caregiving and AARP Public Policy Institute. Caregiving in the US; Washington, DC: AARP Public Policy Institute; 2015.
    1. Reinhard SC, Levine C, Samis S. Home Alone: Family Caregivers Providing Complex Chronic Care. Washington, DC: AARP Public Policy Institute; 2012.
    1. Beng TS, Guan NC, Seang LK, et al. The experiences of suffering of palliative care informal caregivers in Malaysia: a thematic analysis. Am J Hosp Palliat Care. 2013;30(5):473–489.
    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(2):120–128.
    1. Chappell NL, Dujela C, Smith A. Caregiver well-being intersections of relationship and gender. Res Aging. 2015; 37(6):623–645.
    1. Goldsworthy B, Knowles S. Caregiving for Parkinson’s disease patients: an exploration of a stress-appraisal model for quality of life and burden. J Gerontol B Psychol Sci Soc Sci. 2008;63(6): P372–P376.
    1. Dunkle RE, Feld S, Lehning AJ, Kim H, Shen H-W, Kim MH. Does becoming an ADL spousal caregiver increase the caregiver’s depressive symptoms? Res Aging. 2014;36(6):655–682.
    1. Ussher JM, Sandoval M, Perz J, Wong WK, Butow P. The gendered construction and experience of difficulties and rewards in cancer care. Qual Health Res. 2013;23(7):900–915.
    1. Sanders S. Is the glass half empty or full? Reflections on strain and gain in caregivers of individuals with Alzheimer’s disease. Soc Work Health Care. 2005;40(3):57–73.
    1. Thai JN, Barnhart CE, Cagle J, Smith AK. “It just consumes your life”: quality of life for informal caregivers of diverse older adults with late-life disability. Am J Hosp Palliat Care. 2016;33(7):644–650.
    1. Hasson F, Kernohan WG, McLaughlin M, et al. An exploration into the palliative and end-of-life experiences of carers of people with Parkinson’s disease. Palliat Med. 2010;24(7):731–736.
    1. Kang J, Shin DW, Choi JE, et al. Factors associated with positive consequences of serving as a family caregiver for a terminal cancer patient. Psychooncology. 2013;22(3):564–571.
    1. Hodge DR, Sun F. Positive feelings of caregiving among Latino Alzheimer’s family caregivers: understanding the role of spirituality. Aging Ment Health. 2012;16(6):689–698.
    1. Rosland AM, Heisler M, Piette JD. The impact of family behaviors and communication patterns on chronic illness outcomes: a systematic review. J Behav Med. 2012;35(2):221–239.
    1. Barnett AE. Adult child caregiver health trajectories and the impact of multiple roles over time. Res Aging. 2014;37(3):227–252.
    1. Contador I, Fernandez-Calvo B, Palenzuela DL, Migueis S, Ramos F. Prediction of burden in family caregivers of patients with dementia: a perspective of optimism based on generalized expectancies of control. Aging Ment Health. 2012;16(6):675–682.
    1. Semiatin AM, O’Connor MK. The relationship between self-efficacy and positive aspects of caregiving in Alzheimer’s disease caregivers. Aging Ment Health. 2012;16(6):683–688.
    1. Lu Y. Relations between family functioning and health state of patients with β-thalassemia major. J Am College Cardiol. 2015;66(16_S), C248–C249.
    1. Quéniart A, Charpentier M. Initiate, bequeath, and remember: older women’s transmission role within the family. J Women Aging. 2013;25(1):45–65.
    1. Williams B, Woodby L, Drentea P. Ethical capital: ‘what’s a poor man got to leave?’ Sociol Health Illn. 2010;32(6):880–897.
    1. Linderholm M, Friedrichsen M. A desire to be seen: family caregivers’ experiences of their caring role in palliative home care. Cancer Nurs. 2010;33(1):28–36.
    1. Stevens AB, Smith ER, Trickett LR, McGhee R. Implementing an evidence-based caregiver intervention within an integrated healthcare system. Transl Behav Med. 2012;2(2):218–227.
    1. Garlo K, O’Leary JR, Van Ness PH, Fried TR. Burden in caregivers of older adults with advanced illness. J Am Geriatr Soc. 2010;58(12):2315–2322.
    1. Aumann K, Galinsky E, Sakai K, Brown M, Bond JT. The Elder Care Study: Everyday Realities and Wishes for Change. New York, NY: Families and Work Institute; 2010.
    1. Bee PE, Barnes P, Luker KA. A systematic review of informal caregivers’ needs in providing home-based end-of-life care to people with cancer. J Clin Nurs. 2009;18(10):1379–1393.
    1. Himmelstein DU, Thorne D, Warren E, Woolhandler S. Medical bankruptcy in the United States, 2007: results of a national study. Am J Med. 2009;122(8):741–746.
    1. Chari AV, Engberg J, Ray KN, Mehrotra A. The opportunity costs of informal elder-care in the United States: new estimates from the American Time Use Survey. Health Serv Res. 2015;50(3):871–882.
    1. Robison J, Fortinsky R, Kleppinger A, Shugrue N, Porter M. A broader view of family caregiving: effects of caregiving and caregiver conditions on depressive symptoms, health, work, and social isolation. J Gerontol B Psychol Sci Soc Sci. 2009;64(6):788–798.

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