In their own words: recovery after emergency general surgery in the older patient

Introduction

Emergency general surgery (EGS) diseases are unexpected and serious surgical diseases such as symptomatic hepatobiliary disease, complicated hernias, acute gastrointestinal disease such as bleeding, ischemia, obstructions and perforation, and severe infections that require surgical drainage or debridement.1 2 Forty per cent of these admissions occur in patients over 65 years, and the likelihood of surgical intervention rises exponentially with age.3 Older individuals are more likely to develop EGS conditions, and they bear a disproportionate burden of associated mortality and morbidity.3 4

Unlike elective surgery, EGS conditions in the older individual often lead to mortality or a dramatic disability cascade, as older patients have a poorer prognosis than younger patients with the same disease processes.5–7 A study by Smith et al tracked community-dwelling Medicare beneficiaries with EGS conditions who underwent an operation on hospital day 1 or 2; 12% of this cohort died in the hospital, 14% died in the ensuing 9 months; in that same 9-month time frame, 10% had moved permanently to a nursing facility or a long-term acute care facility. In total, 32.3% of the cohort had either death or permanent loss of independence within a year.8 Few studies have examined the long-term experiences of patients who survive. It is unknown if survivors of emergency general surgery have lasting changes in their quality of life from their disease.

The goal of our study was to examine the patient and caregiver experience for older adults who recovered after a serious emergency general surgery condition, from at least 1-year postsurgery. Our goal was to identify potential facilitators or barriers to a high-quality recovery and explore whether their recovery met their expectations, with a particular focus around medical decision making and the patient’s recollection about their understanding of risks and benefits at the time of surgical decision-making.

Methods

We conducted semi-structured interviews to explore the recovery experiences of patients and their caregivers after admission for a major emergency surgical procedure. We screened patients who were at least 1 year from the surgical procedure and were 65 years or older at the time of surgery. To qualify for the study, the patient had to have an index inpatient stay of 7 days or longer for the EGS hospitalization. The patient had to be alive and without cognitive impairment. The patient, their primary caregiver, or both could consent to be interviewed; each participant was given a small stipend for enrollment.

Two parallel interview guides were developed (one for patients and one for caregivers). Interview guides explored three main topics: (1) goals and expectations around recovery; (2) facilitators and barriers to recovery; and (3) understanding of the medical decision-making process. Our interview guide had specific questions about the process of informed consent for the operating room, as the authors felt this interaction would show a potential opportunity for improved communication and goal-setting. Interviewers tested the questions on non-study participants and the guide was iteratively revised to ensure ample opportunities for open-ended discussion with additional probing questions about key issues. The interview guide developed for patients, including examples of additional probing questions, is presented in box 1.

Potential participants were notified of the study via written and mailed communication and then were called by telephone to describe and answer questions about the study and enroll the patient for interview. Interview times were arranged in advance to ensure adequate time for the interviews, and participants could join by telephone or video using Zoom conferencing software (Zoom Video Communications, San Jose, California, USA). Verbal consent for inclusion into the study was recorded as part of the interview. Interviews were conducted by two trained personnel (PK and BA) and continued until theoretical saturation was reached. Interviews were recorded using Zoom, and recordings were transcribed and anonymized by two authors (DLD, VPH).

Two researchers coded the transcripts in parallel (VPH, MJR) to identify themes, and an inductive thematic approach was used for analysis.9 The thematic analysis study team (VPH, MJR, KAB, ATP) included three individuals with extensive experience in qualitative methodology, and met iteratively to review and refine coding themes. Information about age, demographics, and surgeries were extracted from the electronic medical record. Caregiver demographics were not recorded. The entire study team contributed to the writing and critical revisions of the manuscript. The level of evidence for this Qualitative study was deemed level II using the methods described in Daly et al.10

Results

In total, 15 interviews were performed, of whom 11 were patients and 4 were caregivers. Three of the four caregivers were spouses of individuals who were also interviewed; the fourth caregiver was a sibling of a patient and, while the patient consented to the sibling interview, the patient themselves declined to be interviewed. The 12 patients focused on in the study ranged in age from 66 to 90 years of age; 4 were men and 8 were women. There were seven white patients, three black patients, one Hispanic patient, and one individual who declined to answer about race. Six patients were married and six were divorced. Operations included two laparoscopic cholecystectomies for cholecystitis or pancreatitis, one ventral hernia repair for a small bowel obstruction, and eight laparotomies for peritonitis or bowel obstruction. Interviewed caregivers included three men and one woman. Our coding schema is presented in figure 1. Key themes identified through analysis include: social support, recovery, medical decision making, and postoperative issues. Illustrative quotes are presented throughout the manuscript.

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Discussion

Our study highlights the key experiences of older adults who undergo an emergency general surgery, as perceived at 1 year following the index admission. Key thematic findings we derived from analysis focus on patients relying heavily on family caregivers for support throughout the recovery period, and patients sharing a common goal of ‘going back to normal’. The specifics of recovery from the patient perspective were wide-ranging. Patients’ reflections were often shaped by their memories of leaning on their family to fill their instrumental and emotional needs.

There has been one prior qualitative study reported on older adults’ perspectives 3 months after emergency general surgery.11 Their findings were similar to ours and found that patients shared a common treatment goal of ‘getting back to normal’, and many relied on informal caregiving from family.11 This study noted that, based on their evaluation, a potential opportunity to improve postoperative recovery would be to develop methods to include caregivers more deliberately into the discharge planning for transitions of care. Social ties and support is known to be critical for psychological and physical well-being, and our study demonstrates the importance of family for postoperative recovery in EGS.12 Notably, all of the individuals we interviewed had family who provided support at some level; critically, future inquiry might examine the recovery process for individuals who do not have family for support.

Our study was designed to identify potential opportunities for improvement for postoperative recovery. As such, our study inclusion and exclusion criteria were crafted to focus on these patients. We only included patients who had a hospital stay of 7 days or longer, to identify patients who either had a complex hospital course or perhaps would have difficulty with discharge planning, as we believed that these criteria would identify patients with a high likelihood for identifying opportunities for improvement. In addition, we also included patients who survived at least 1 year, which likely identified patients who were healthier and perhaps less frail at the time of admission. While these inclusion criteria perhaps narrowed our population, we believed that this population would provide high-quality first-person accounts of facilitators and barriers to recovery.

Indeed, our study indirectly highlights experiences from patients who did not meet our inclusion criteria: our study generally included patients with positive outcomes, interviewing survivors who were cognitively intact 1 year after surgery. All our patient participants had family on which they could rely. Our findings thus pose the critical question: what happens during recovery if one does not have someone who is willing and/or able to provide instrumental and emotional support? Researchers who reached out to enroll and consent patients noted having spoken briefly to caregivers of patients who were not eligible (due to death or mental status). Researchers additionally spoke to caregivers who would have been willing to be interviewed except that their loved one had passed away; fruitful future research might qualitatively examine the experiences of those who had poorer outcomes.

A future improvement in care could be to systematically identify and include key caregivers throughout the entire treatment process even when an older adult is competent and making their own decisions. Involvement of caregivers for key discussions about medical decision making, discussions about advanced directives, and for discharge planning could help smooth the transition home and mollify some of the emotional distress of recovery, and may give caregivers an improved understanding of their role expectations during the patient’s recovery. This discussion could include time to recovery, specific expectations about need for assistance, and realistic expectations about functional recovery. This way, if caregivers are unable or unwilling to assist, other avenues or resources can be considered.

Another possible avenue to help bridge gaps for patients with instrumental and/or emotional needs could be peer support groups, which have been used in other complex medical conditions with promising results.13–16 Within the field of acute care surgery, trauma peer mentors and peer support groups have been used, and utilisation of these and similar services have been demonstrated to have positive effects on adherence to care plans.13 17 Social support has also been demonstrated to be key to recovery after cardiac surgery and cardiac interventions.18 19 Although these populations differ from the older emergency general surgery population, these patients share some parallels including the disruption to their daily lives related to an unexpected life-threatening illness.

Our study revealed that, although the timing and quality of recovery varied, a key recovery facilitator for older patients was reliance on spouses, other family, and friends for support for daily tasks and emotional support. There is an opportunity in healthcare to better align patients and caregivers throughout the process about posthospital discharge needs and expectations to bolster successful recovery. One participant (caregiver of 80s, female) said it best: “In a real sense, we are team players, the medical people and myself, with a common objective. And that’s to see an individual be restored.”