Abstract
Context
Spokespersons serving as surrogate decision makers for their loved ones report high
levels of stress. Despite known benefits, advance care planning (ACP) conversations
often do not occur. More information is needed to understand spokesperson stress during
ACP.
Objectives
To explore if and how spokespersons perceive stress related to ACP conversations;
compare factors related to stress; and assess whether ACP intervention impacted stress.
Methods
Secondary and mixed-methods analysis with data transformation of semistructured interviews
occurring during a 2 × 2 factorial (four armed) randomized controlled trial that compared
standard online ACP to a comprehensive online ACP decision aid. Tools were completed
by patients with advanced illness (n = 285) alone or with their spokesperson (n = 285). About 200 spokesperson interviews were purposively sampled from each of the
four arms (50 per arm).
Results
ACP conversations were reported as stressful by 54.41% (74 of 136) and nonstressful
by 45.59% (62 of 136). Five themes impacting spokesperson stress were the nature of
the relationship with their loved one; self-described personality and belief systems;
knowledge and experience with illness and ACP conversations; attitude toward ACP conversations;
and social support in caregiving and decision making. No significant differences in
stress were associated with arm assignment.
Conclusion
Identifying what factors impact spokesperson stress in ACP conversations can be used
to help design ACP interventions to more appropriately address the needs and concerns
of spokespersons.
Key Words
To read this article in full you will need to make a payment
Purchase one-time access:
Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online accessOne-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:
Subscribe to Journal of Pain and Symptom ManagementAlready a print subscriber? Claim online access
Already an online subscriber? Sign in
Register: Create an account
Institutional Access: Sign in to ScienceDirect
References
- Surviving surrogate decision-making: what helps and hampers the experience of making medical decisions for others.J Gen Intern Med. 2007; 22: 1274-1279
- Advance directives and outcomes of surrogate decision making before death.N Engl J Med. 2010; 362: 1211-1218
- The health impact of health care on families: a matched cohort study of hospice use by decedents and mortality outcomes in surviving, widowed spouses.Soc Sci Med. 2003; 57: 465-475
- Family caregivers, patients and physicians: ethical guidance to optimize relationships.J Gen Intern Med. 2010; 25: 255-260
- Stress variances among informal hospice caregivers.Qual Health Res. 2012; 22: 1114-1125
- The impact of advance care planning on end of life care in elderly patients: randomised controlled trial.BMJ. 2010; 340: c1345
- Identifying family members who may struggle in the role of surrogate decision maker.Crit Care Med. 2012; 40: 2281-2286
- Factors affecting stress experienced by surrogate decision makers for critically ill patients: implications for nursing practice.Intensive Crit Care Nurs. 2014; 30: 77-85
- Learned helplessness among families and surrogate decision-makers of patients admitted to medical, surgical, and trauma ICUs.Chest. 2012; 142: 1440-1446
- Family conflict at the end of life: lessons learned in a model program for vulnerable older adults.J Palliat Med. 2006; 9: 791-801
- Life after the death of a loved one: long-term distress among surrogate decision makers.J Hosp Palliat Nurs. 2011; 13: 378-386
- Risk of post-traumatic stress symptoms in family members of intensive care unit patients.Am J Respir Crit Care Med. 2005; 171: 987-994
- Improving family communications at the end of life: implications for length of stay in the intensive care unit and resource use.Am J Crit Care. 2003; 12: 317-323
- Advance care planning and the quality of end-of-life care in older adults.J Am Geriatr Soc. 2013; 61: 209-214
- Advance care planning does not adversely affect hope or anxiety among patients with advanced cancer.J Pain Symptom Manage. 2015; 49: 1088-1096
- Association between advance directives and quality of end-of-life care: a national study.J Am Geriatr Soc. 2007; 55: 189-194
- Family members' experiences with decision making for incompetent patients in the ICU: a qualitative study.Am J Crit Care. 1998; 7: 30-36
- Families looking back: one year after discussion of withdrawal or withholding of life-sustaining support.Crit Care Med. 2001; 29: 197-201
- Advance directives as acts of communication.Arch Intern Med. 2001; 161: 421-430
- “Turning toward death together”: the functions of messages during final conversations in close relationships.J Soc Pers Relat. 2007; 24: 225-253
- Family decision making at end of life.Palliat Support Care. 2005; 3: 131-142
- The end-of-life family conference: communication empowers.Am J Respir Crit Care Med. 2005; 171: 803-804
- Hope, truth, and preparing for death: perspectives of surrogate decision makers.Ann Intern Med. 2008; 149: 861-868
- Systematic review: the effect on surrogates of making treatment decisions for others.Ann Intern Med. 2011; 154: 336-346
- End-of-life conversations.JAMA. 2000; 284: 1573-1578
- Dying in America improving quality and honoring individual preferences near the end of life: the pressing need to improve end-of-life care.Inst Med. 2014; 180: 365-367
- Social constraints and spousal communication in lung cancer.Psychooncology. 2006; 15: 673-683
- How should we talk about palliative care, death and dying? A qualitative study exploring perspectives from caregivers of people with advanced cancer.Palliat Med. 2018; 32: 861-869
- Why don't patients and physicians talk about end-of-life care? Barriers to communication for patients with acquired immunodeficiency syndrome and their primary care clinicians.Arch Intern Med. 2000; 160: 1690-1696
- Talking with terminally ill patients and their caregivers about death, dying, and bereavement: is it stressful? Is it helpful?.Arch Intern Med. 2004; 164: 1999-2004
- A pilot trial of decision aids to give truthful prognostic and treatment information to chemotherapy patients with advanced cancer.J Support Oncol. 2011; 9: 79-86
- A randomized, controlled trial to improve advance care planning among patients undergoing cardiac surgery.Med Care. 2005; 43: 1049-1053
- A randomized controlled trial of strategies to improve family members' preparedness for surrogate decision-making.Am J Hosp Palliat Care. 2018; 35: 866-874
- Purposeful sampling for qualitative data collection and analysis in mixed method implementation research.Adm Policy Ment Health. 2015; 42: 533-544
- The constant comparative method of qualitative analysis.Soc Probl. 1965; 12: 436-445
- Integrating analyses for mixed methods research.SAGE, Thousand Oaks, CA2017
Article info
Publication history
Published online: July 06, 2020
Accepted:
July 1,
2020
Identification
Copyright
© 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
