Mitigating End-of-Life Burden: Parallel Perspectives of Physician-Patients & Family Caregivers



      Patients and family caregivers perceive burden in care at the end of life differently even when the patient is a physican.


      We describe how older adult physicians as prospective patients (hereafter “physician-patients”) and family caregivers of physician-patients view burden in care at the end of life.


      Interviews with physician-patients (n = 28) and family caregivers (n = 26) of physician-patients who had died were conducted as part of a shared decision-making study. Both groups expressed concerns with burden at the end of life. We coded and analyzed descriptions of burden using inductive and deductive approaches to coding sub-themes as in qualitative description. We then created a conceptual model depicting the relationships among the concepts, returning to the interviews to verify respective contexts.


      Unilateral actions taken at different points in the illness trajectory by both groups suggested different concerns about burden occurring in parallel. While everyone anticipated burden associated with care at the end of life, physician-patients made legal and financial arrangements to minimize this burden. Nevertheless several family caregivers described the burden that they experienced. We propose a conceptual model to guide future research and care.


      Physician-Patients ‘ clinical insights drive their attempts to alleviate burden on their families. However, family caregivers still experienced burden. Recognizing the parallel perspectives of burden may inform the type and timing of interventions to effectively minimize burden and provide compassionate care to both patients and families at the end of life.

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        • Cousineau N
        • McDowell I
        • Hotz S
        • Hébert P
        Measuring chronic patients’ feelings of being a burden to their caregivers development and preliminary validation of a scale.
        Med Care. 2003; 41: 110-118
        • Tang ST
        • Hsieh CH
        • Chiang MC
        • et al.
        Impact of high self-perceived burden to others with preferences for end-of-life care and its determinants for terminally ill cancer patients: a prospective cohort study.
        Psychooncology. 2017; 26: 102-108
        • McPherson CJ
        • Wilson KG
        • Murray MA
        Feeling like a burden to others: a systematic review focusing on the end of life.
        Palliat Med. 2007; 21: 115-128
        • Johnson JO
        • Sulmasy DP
        • Nolan MT
        Patients’ experiences of being a burden on family in terminal illness.
        J Hosp Palliat Nurs. 2007; 9: 264-269
        • Holtslander L
        • Baxter S
        • Mills K
        • et al.
        Honoring the voices of bereaved caregivers: a metasummary of qualitative research.
        BMC Palliat Care. 2017; 16: 48
        • Bastawrous M
        Caregiver burden-A critical discussion.
        Int J Nurs Stud. 2013; 50: 431-441
        • Weisser FB
        • Bristowe K
        • Jackson D
        Experiences of burden, needs, rewards and resilience in family caregivers of people living with motor neurone disease/amyotrophic lateral sclerosis: a secondary thematic analysis of qualitative interviews.
        Palliat Med. 2015; 29: 737-745
        • Gramelspacher GP
        • Zhou XH
        • Hanna MP
        • Tierney WM
        Preferences of physicians and their patients for end-of-life care.
        J Gen Intern Med. 1997; 12: 346-351
        • Gillick MR
        • Hesse K
        • Mazzapica N
        Medical technology at the end of life: what would physicians and nurses want for themselves?.
        Arch Intern Med. 1993; 153: 2542-2547
        • Ubel PA
        • Angott AM
        • Zikmund-Fisher BJ
        Physicians recommend different treatments for patients than they would choose for themselves.
        Arch Intern Med. 2011; 17: 630-634
        • Abshire MA
        • Nolan MT
        • Dy SM
        • Gallo JJ
        What matters when doctors die: a qualitative study of family perspectives. Vidal EIO, ed.
        PLoS One. 2020; 15e0235138
        • Gallo JJ
        • Andersen MS
        • Hwang S
        • Meoni L
        • Jayadevappa R
        Physician preferences for aggressive treatment at the end of life and area-level health care spending: the johns hopkins precursors study.
        Gerontol Geriatr Med. 2017; 3: 1-7
        • Gallo JJ
        • Abshire M
        • Hwang S
        • Nolan MT
        Advance directives, medical conditions, and preferences for end-of-life care among physicians: 12-year follow-up of the johns hopkins precursors study.
        J Pain Symptom Manage. 2019; 57: 556-565
        • Thomas CB
        Observations on some possible precursors of essential hypertension and coronary artery disease.
        Bull Johns Hopkins Hosp. 1951; 89: 419-441
        • Gallo JJ
        • Straton JB
        • Klag MJ
        • et al.
        Life-sustaining treatments: what do physicians want and do they express their wishes to others?.
        J Am Geriatr Soc. 2003; 51: 961-969
        • Sandelowski M
        whatever happened to qualitative description?.
        Res Nurs Heal. 2000; 23: 334-340
        • Bradley EH
        • Curry LA
        • Devers KJ
        Qualitative data analysis for health services research: developing taxonomy, themes, and theory.
        Health Serv Res. 2007; 42: 1758-1772
        • Colorafi KJ
        • Evans B
        Qualitative descriptive methods in health science research.
        Heal Environ Res Des J. 2016; 9: 16-25
        • Boeije H
        A purposeful approach to the constant comparative method in the analysis of qualitative interviews.
        Qual Quant. 2002; 36: 391-409
        • Koss CS
        • Baker TA
        Where there's a will: the link between estate planning and disparities in advance care planning by white and black older adults.
        Res Aging. 2018; 40: 281-302
        • Steinhauser KE
        • Clipp EC
        • McNeilly M
        • Christakis NA
        • McIntyre LM
        • Tulsky JA
        In search of a good death: observations of patients, families, and providers.
        Ann Intern Med. 2000; 132: 825-832
        • 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.
        J Am Med Assoc. 2000; 284: 2476-2482
        • Heyland DK
        • Dodek P
        • Rocker G
        • et al.
        What matters most in end-of-life care: perceptions of seriously ill patients and their family members.
        CMAJ. 2006; 174: 627-633
        • Nicholas Dionne-Odom J
        • Hooker SA
        • Bekelman D
        • et al.
        Family caregiving for persons with heart failure at the intersection of heart failure and palliative care: a state-of-the-science review.
        Heart Fail Rev. 2017; 22: 543-557
        • Murphy E
        • Froggatt K
        • Connolly S
        • et al.
        Palliative care interventions in advanced dementia.
        Cochrane Database Syst Rev. 2016; 12CD011513
        • Levi BH
        • Green MJ
        Too soon to give up: re-examining the value of advance directives.
        Am J Bioeth. 2010; 10: 3-22