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Background

Results

Conclusions

  • The Comprehensive Care Physician (CCP) program links patients with increased risk of hospitalization with a single physician who provides in- and out-patient care
  • Goal-concordant end of life (EOL) care & advance care planning (ACP) reduce utilization and psychosocial burden near EOL1
  • ACP and EOL are especially important for high utilizers of health care1,2
  • Little is understood about factors involved in EOL care and ACP experiences of high utilizers1,2

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  • End-of-life care for high utilizers requires an increase in caregiver support and caregiver time.
  • As health care needs increased, some patients became more mistrustful of providers.
  • Others with increasing health care needs became more trusting of providers.
  • These patients did eventually accept their own deaths, which led to less aggressive care.
  • ACP was both informal and formal. Both types contributed to caregiver confidence in decisions.
  • Preliminary findings have the potential to inform larger studies seeking to understand experiences of high healthcare utilizers in their last year of life, and how ACP impacts their EOL and their caregivers.

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  1. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences near the End of Life. National Academies Press; 2015
  2. Sautter JM, Tulsky JA, Johnson KS, et al. Caregiver Experience During Advanced Chronic Illness and Last Year of Life. Journal of the American Geriatrics Society. 2014;62(6):1082-1090. doi:10.1111/jgs.12841
  3. Timmermans S, Tavory I. Theory Construction in Qualitative Research: From Grounded Theory to Abductive Analysis. Sociological Theory. 2012;30(3):167-186. doi:10.1177/0735275112457914
  • Patients were selected from one care program at one affiliated medical center
  • Interviews subject to recall bias

The proxies of CCP patients who gave their time to this study. This project was funded by National Institute on Aging Award P30AG066619

Setting and Participants

Data Collection and Analysis

  • Interviews conducted over Zoom or phone and transcribed by one of four team members
  • Each transcript coded by 2 team members
  • Used abductive analysis, a common sociological tool, to code transcripts3
  • Coding involved identifying a priori themes based on literature, reviewing transcripts, identifying emergent themes, selecting representative quotes for themes, and resolving disagreements within the coding team

Design and participants: Qualitative after death semi-structured interviews of proxies/caregivers (n=11)

Setting: The CCP program at the University of Chicago

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Table 1. Themes identified in proxy after-death interviews

Theme

Supporting Quotations

Role of informal caregivers

“But again, she was very well taken care of [at the hospice center]. She was never left alone, because we were all with her, you know. There was a child, a grandchild, somebody was gonna be there with her.” (Proxy 8)

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“... because I was taking care of him and my mom, because my mom she had – she's in her in her last stages of dementia. So we set it up where he would have a home care provider, and that I would – that I would be you know – his home care provider” (Proxy 9)

(Lack of) trust and confidence in healthcare providers

““Yeah, she did [trust her doctors], she didn’t doubt any one of them. She thought they were all looking out for her own best interest. She thought that. Each and every one of them, she was very… They were very attentive." (Proxy 4)

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"[In reference to very frequent, aggressive care] “it's kind of like being alive as a human specimen, and someone’s just dissecting along the way." (Proxy 3)

Pursuit of health care with goal of improving health

“No, he didn't – he didn’t wanna stop no care or nothing. You know, anything that would- that would be of help or assistance, you know. He would do that. It would just – you know, overall, he was just tired, you know” (Proxy 8)

“And they- it's something they do with his vocal- with vocal chords, dealing with his throat, but he had that procedure- he would have had it done twice. The first time, it helped, but he said it hurted really bad, so he said he didn't wanna do it no more.” (Proxy 9)

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Awareness or acceptance of declining health

"She just, you know, she literally realized that this is kind of her fate, so to speak. She would definitely be in a situation where …she was kind of ready for it." (Proxy 4)

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“So like once she knew that we knew how to ease the pain, once she knew that, um – that she was at a point where no medical attention was gonna change anything, she was like, you know, I accept it for what it is. I've lived 100 years, so it's irrelevant, you know, it’s like whatever.” (Proxy 8)

Faith and/or spirituality in patients’ EOL and ACP

“Yeah, they wanted to put her on hospice, but I told them that I believe in God and that God would direct they path for what they need to do. And so they kept working with her. But it was no change.” (Proxy 2)

Proxy confidence in EOL decisions with formal and informal ACP

“Yes. I – I fulfilled her prom[ise]. I told them to do all they can, no, we don't want to put her in hospice. No, we don’t want to take off no tubes, no. That’s what I told them.” (Proxy 2)

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“It was communicated with his doctor and then, you know, she- it was like with all of us, you know. She let us know what was what.” (Proxy 9)

Objectives

  • Aim 1: To explore factors that shaped EOL care experiences among high healthcare utilizers in the last year of death
  • Aim 2: To examine whether and how ACP affected EOL care experiences of high healthcare utilizers in their last year of life

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THE EXPERIENCES OF HIGH UTILIZERS WITH END-OF-LIFE CARE AND ADVANCE CARE PLANNING AS REPORTED BY PROXIES

Presenting authors: Makayla Betancourt2, Omar Marin3, Jamie Zeng1

Other authors: Sriya Bandi,1 Alexandra Tate1 (PI)

1University of Chicago; 2DePaul University; 3University of Illinois at Chicago

Limitations

Acknowledgements

References