Hostname: page-component-cd9895bd7-8ctnn Total loading time: 0 Render date: 2024-12-25T04:32:55.311Z Has data issue: false hasContentIssue false
  • English
  • Français

Social isolation at the end of life: A case report of one person's journey navigating the medical landscape during the COVID-19 pandemic

Published online by Cambridge University Press:  19 May 2022

Monica T. Agosta Open the ORCID record for Monica T. Agosta [Opens in a new window] ,
Michael Tang Open the ORCID record for Michael Tang [Opens in a new window] ,
Cindy L. Carmack  and
Eduardo Bruera
Monica T. Agosta*
Affiliation:
Department of Palliative Care, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX
Michael Tang
Affiliation:
Department of Palliative Care, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX
Cindy L. Carmack
Affiliation:
Department of Palliative Care, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX
Eduardo Bruera
Affiliation:
Department of Palliative Care, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, Houston, TX
*
Author for correspondence: Monica T. Agosta, Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas MD Anderson Cancer Center, 1515 Holcombe Blvd, Unit 1414, Houston, TX 77030, USA. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Background

In addition to physical symptom burden, psychological suffering at end of life (EOL) is quite pervasive. As such, the interdisciplinary team in our Palliative and Supportive Care Unit strives to provide quality care sensitive to the physical and psychosocial needs of patients. Involving and allowing for the presence of family members is one way in which we afford our patients some additional comfort. Unfortunately, the current pandemic has placed limitations on this rather fundamental need for both patients and their family members. Here, we present a case illustrating the effects of visitor restrictions/isolation due to COVID-19 on the suffering of a patient at the EOL.

Case description

A male in his 20s with a refractory hematologic malignancy decided to pursue a comfort-based approach to care after a rapid clinical deterioration. Due to visitor restrictions, he had to face this decision with limited support at the bedside, which caused significant distress. He was forced to choose among several immediate family members who would be at his side through his hospitalization, to be his advocate, at times his voice, his confidant, and the person to relay all information to those on the outside. He expressed a wish to be married before he died, which occurred in our palliative care unit. This life goal was one we would normally encourage those he loved to gather around him, but this was not possible. He passed peacefully two days after he was married.

Conclusion

Although social limitations are necessary to help provide safety to the patients and staff in a hospital, they can have a direct impact on the suffering of patients and families at the EOL. Helping to maintain dignity, reflect on their life, and resolve any conflicts in the presence of family members is a benchmark for providing quality palliative care. Being barred from visitation due to isolation, threatens this care and lays the foundation for complicated grief among family members. Further research is needed to help balance the needs of those at the EOL with public safety. One such measure to help ease distress is to allow for more virtual visitation through electronic measures.

Keywords

COVID-19End of lifePalliative carePandemicSocial isolation
Type
Case Report
Information
Palliative & Supportive Care , Volume 20 , Issue 6 , December 2022 , pp. 900 - 903
Check for updates
Copyright
Copyright © The Author(s), 2022. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Footnotes

*

Both authors contributed equally.

References

REFERENCES

Block, SD (2006) Psychological issues in end-of-life care. Journal of Palliative Medicine 9(3), 751–772.CrossRefGoogle ScholarPubMed
Brooks, SK, Webster, RK, Smith, LE, et al. (2020) The psychological impact of quarantine and how to reduce it: Rapid review of the evidence. The Lancet 395(10227), 912–920.CrossRefGoogle Scholar
Buonaccorso, L, Tanzi, S, De Panfilis, L, et al. (2021) Meanings emerging from dignity therapy among cancer patients. Journal of Pain and Symptom Management 62(4), 730–737.CrossRefGoogle ScholarPubMed
Carr, D, Boerner, K and Moorman, S (2020) Bereavement in the time of coronavirus: Unprecedented challenges demand novel interventions. Journal of Aging & Social Policy 32(4–5), 425–431.Google ScholarPubMed
Chochinov, HM, Bolton, J and Sareen, J (2020) Death, dying, and dignity in the time of the COVID-19 pandemic. Journal of Palliative Medicine 23(10), 1294–1295.CrossRefGoogle ScholarPubMed
Drutchas, A, Kavanaugh, A, Cina, K, et al. (2021) Innovation in a crisis: Lessons learned from the rapid development of an end-of-life palliative care unit during the COVID-19 pandemic. Journal of Palliative Medicine 24(9), 1280–1283.CrossRefGoogle Scholar
Gammon, J (1998) Analysis of the stressful effects of hospitalisation and source isolation on coping and psychological constructs. International Journal of Nursing Practice 4(2), 84–96.CrossRefGoogle ScholarPubMed
Global Council on Brain Health (2020). Preserving your brain health during illness or surgery: GCBH recommendations to prevent and treat delirium. Available at www.GlobalCouncilOnBrainHealth.org (Accessed on 20 December 2021)CrossRefGoogle Scholar
Goldfarb, MJ, Bibas, L, Bartlett, V, et al. (2017) Outcomes of patient- and family-centered care interventions in the ICU: A systematic review and meta-analysis. Critical Care Medicine 45(10), 1751–1761.CrossRefGoogle ScholarPubMed
Goveas, JS and Shear, MK (2020) Grief and the COVID-19 pandemic in older adults. The American Journal of Geriatric Psychiatry 28(10), 1119–1125.CrossRefGoogle ScholarPubMed
Granberg, A, Engberg, IB and Lundberg, D (1999) Acute confusion and unreal experiences in intensive care patients in relation to the ICU syndrome. Part II. Intensive and Critical Care Nursing 15(1), 19–33.CrossRefGoogle Scholar
Holt-Lunstad, J, Smith, TB, Baker, M, et al. (2015) Loneliness and social isolation as risk factors for mortality: A meta-analytic review. Perspectives on Psychological Science 10(2), 227–237.CrossRefGoogle ScholarPubMed
Jordan, TR, Wotring, AJ, McAfee, CA, et al. (2022) The COVID-19 pandemic has changed dying and grief: Will there be a surge of complicated grief? Death Studies 46(1), 84–90.CrossRefGoogle ScholarPubMed
Karlawish, J (2020) Hospitalized adults need their caregivers – They aren't visitors. In STAT+.Google Scholar
Krikorian, A, Maldonado, C and Pastrana, T (2020) Patient's perspectives on the notion of a good death: A systematic review of the literature. Journal of Pain and Symptom Management 59(1), 152–164.CrossRefGoogle ScholarPubMed
Maxfield, M, Solomon, S, Pyszczynski, T, et al. (2010) Mortality salience effects on the life expectancy estimates of older adults as a function of neuroticism. Journal of Aging Research 2010, 260123.CrossRefGoogle ScholarPubMed
Nelson-Becker, H and Victor, C (2020) Dying alone and lonely dying: Media discourse and pandemic conditions. Journal of Aging Studies 55, 100878.CrossRefGoogle ScholarPubMed
Nielsen, MK, Neergaard, MA, Jensen, AB, et al. (2016) Do we need to change our understanding of anticipatory grief in caregivers? A systematic review of caregiver studies during end-of-life caregiving and bereavement. Clinical Psychology Review 44, 75–93.Google ScholarPubMed
Powell, VD and Silveira, MJ (2020) What should palliative care's response be to the COVID-19 pandemic? Journal of Pain and Symptom Management 60(1), e1–e3.CrossRefGoogle ScholarPubMed
Steinhauser, KE, Christakis, NA, Clipp, EC, et al. (2000) Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 284(19), 2476–2482.CrossRefGoogle ScholarPubMed
Steinhauser, KE, Alexander, SC, Byock, IR, et al. (2008) Do preparation and life completion discussions improve functioning and quality of life in seriously ill patients? Pilot randomized control trial. Journal of Palliative Medicine 11(9), 1234–1240.CrossRefGoogle ScholarPubMed
Stroebe, M and Schut, H (2021) Bereavement in times of COVID-19: A review and theoretical framework. Omega (Westport) 82(3), 500–522.CrossRefGoogle ScholarPubMed
Treml, J, Schmidt, V, Nagl, M, et al. (2021) Pre-loss grief and preparedness for death among caregivers of terminally ill cancer patients: A systematic review. Social Science & Medicine 284, 114240.CrossRefGoogle ScholarPubMed
Usher, K, Bhullar, N and Jackson, D (2020) Life in the pandemic: Social isolation and mental health. Journal of Clinical Nursing 29(15–16), 2756–2757.CrossRefGoogle ScholarPubMed
Wakam, GK, Montgomery, JR, Biesterveld, BE, et al. (2020) Not dying alone - Modern compassionate care in the COVID-19 pandemic. The New England Journal of Medicine 382(24), e88.CrossRefGoogle ScholarPubMed
Wiener, L, Rosenberg, AR, Pennarola, B, et al. (2021) Navigating the terrain of moral distress: Experiences of pediatric end-of-life care and bereavement during COVID-19. Palliative & Supportive Care 19(2), 129–134.CrossRefGoogle ScholarPubMed