“There’s So Much That They’re Enduring”: Experiences of Older Adults Undergoing Major Elective Surgery

Abstract

Objective:

This qualitative study aimed to explore the psychosocial experience of older adults undergoing major elective surgery from the perspective of both the patient and family caregiver.

Summary Background Data:

Older adults face unique psychological and social vulnerabilities that can increase susceptibility to poor health outcomes. How these vulnerabilities influence surgical treatment and recovery is understudied in the geriatric surgical population.

Methods:

Adults aged 65 and older undergoing a high-risk major elective surgery at the University of California, San Francisco and their caregivers were recruited. Semi-structured interviews were conducted at three time points: 1–2 weeks before surgery, and at 1- and 3-months following surgery. An inductive qualitative approach was used to identify underlying themes.

Results:

Twenty-five older adult patients (age range 65–82 years, 60% male) and 11 caregivers (age range 53–78 years, 82% female) participated. Three themes were identified. First, older surgical patients experienced significant challenges to emotional well-being both before and after surgery, which had a negative impact on recovery. Second, older adults relied on a combination of personal and social resources to navigate these challenges. Lastly, both patients and caregivers desired more resources from the healthcare system to address “the emotional piece” of surgical treatment and recovery.

Conclusions:

Older adults and their caregivers described multiple overlapping challenges to emotional well-being that spanned the course of the perioperative period. Our findings highlight a critical component of perioperative care with significant implications for the recovery of older surgical patients.

MINI ABSTRACT

This qualitative study investigated the psychosocial experience of older adults undergoing major elective surgery from the perspective of both the patient and family caregiver. Older adults faced significant challenges to emotional well-being that negatively impacted surgical treatment and recovery. We highlight the need for additional resources to address mental and emotional needs of geriatric surgical patients.

INTRODUCTION

Older adults, defined as those individuals aged 65 years and above, make up a considerable subset of the surgical population, representing over a third of all inpatient procedures.^1,2 Despite advances in surgical care, older adults are at increased risk of life-threatening postoperative complications that can negatively affect functional outcomes and quality of life.^3,4 While comorbidities and age-related physiological changes contribute to this risk, older adults also face unique psychological and social vulnerabilities that can compound susceptibility to poor health outcomes.^5–7

These psychosocial vulnerabilities, which can include poor mental health, emotional distress, and social isolation, are prevalent in the geriatric surgical population.^8–10 When screened in the preoperative setting, about half of older surgical patients endorse poor social support and elevated distress.¹¹ Importantly, poor emotional well-being prior to surgery has been associated with negative outcomes including an increase in post-operative complications and mortality, and worsening functional status, quality of life, and patient satisfaction.^12–16 Despite their prevalence, the mechanisms by which psychosocial vulnerabilities manifest and influence the surgical experience are understudied in geriatric patients. Additionally, it is unclear how older adults navigate these challenges and what unmet needs remain.

In this study, we interviewed older surgical patients and their family caregivers at multiple time points through the perioperative period. By leveraging both patient and caregiver perspectives over time and using a qualitative design, our objective was to gain a deeper understanding of the psychosocial experience of older adults undergoing major elective surgery.

METHODS

Setting and Participants

Convenience sampling was used to identify English-speaking adults aged 65 and older through the University of California, San Francisco (UCSF) Prepare clinic, a preoperative readiness clinic. All recruited patients were scheduled to undergo high-risk elective surgery (surgeries previously identified as those with > 1% 30 day in-hospital mortality).¹⁷ Caregivers, when identified by enrolled patients, were also recruited. All participants received a $25 gift card for participation. The study was approved by the UCSF Institutional Review Board (IRB # 19–28391).

Data Collection

Semi-structured, in-depth telephone interviews were conducted with participants between November 2020 and November 2021. Patients and caregivers were interviewed separately. Two trained researchers conducted the interviews at three time points: 1–2 weeks prior to surgery, and at 1- and 3-months following surgery. An interview guide was developed that broadly addressed the patient’s emotional experiences, worries, coping strategies, social support, and challenges encountered during the perioperative period. Interviews were audio recorded and transcribed verbatim. De-identified transcripts were stored and coded using Atlas.ti (ATLAS.ti7, Scientific Software Development; Berlin, Germany).

Data Analysis

Three coders employed an inductive approach to identify emerging themes through line-by-line coding of transcripts.¹⁸ Codes identified during a comprehensive first-pass reading of all the transcripts were organized into a codebook, which served as a guide for the second-pass coding. Discrepancies between coders were adjudicated by group consensus. The research team, which consisted of health services researchers, surgeons, and a geriatrician, iteratively discussed and refined the categorization of identified codes into broader themes, conducting interviews until data saturation was achieved and no new themes were identified.¹⁹

RESULTS

Twenty-five older adult patients and 11 caregivers were enrolled. After the preoperative interview, 1 patient and 1 caregiver died, 3 patients declined further interviews, and 2 patients were unable to be reached. Patients ranged from 64 to 82 years old and were predominantly white (76%), male (60%), married (72%), and well-educated (Table 1). One-fifth of patients lived alone. Caregivers were typically the patient’s female spouse (64%).

Table 1.

Baseline Characteristics of Participants

Patient Characteristics (N = 25)	Value N (%)
Age, median (range), y	73 (65–82)
Male	15 (60)
Race/ethnicity
White	19 (76)
Hispanic	3 (12)
Asian/Pacific Islander	2 (8)
Black/African American	1 (4)
Relationship Status
Married	18 (72)
Single/Divorced/Widowed	7 (28)
Living Situation
Lives with spouse/children	20 (80)
Lives alone	5 (20)
Education
High school diploma or GED	3 (21)
Some college, no degree	4 (29)
Bachelor or graduate degree	7 (50)
Planned Surgical Procedure Type
Hepatopancreatobiliary	5 (20)
Neurosurgery	4 (16)
General	4 (16)
Cardiac	3 (12)
Vascular	3 (12)
Thoracic	3 (12)
Transplant	2 (8)
Urologic	1 (4)
Caregiver Characteristics (N = 11)
Age, median (range), y	70 (53–78)
Male	2 (18)
Relationship to patient
Spouse	9 (82)
Child	2 (18)

Theme 1. Challenges to emotional well-being were prevalent and negatively impacted the surgical experience and recovery.

Older adults frequently described multiple overlapping sources of distress throughout the perioperative period, with only three patients reporting no significant concerns (Table 2). Before surgery, fearing what could go wrong and facing the possibility of dying were frequently mentioned by patients and their caregivers. As one patient expressed, “And is this going to work? Am I going to make it out of there? The surgeries that I’ve had in the past, I’ve never felt this way…this is a lot more serious and it’s just scary.” Many patients described how suffering associated with their disease impacted their well-being, “And the pain is unbelievable from trigeminal neuralgia. Its nickname is the suicide disease…And my last one was beyond what I could take as a human being” Others worried that surgery could worsen pre-existing mental health issues, “But when I already feel like I sometimes am a little bit depressed, I don’t want to exacerbate the problem, God, I’d hate it if it did.”

Table 2.

Challenges to emotional well-being encountered during surgical treatment as identified by patients and caregivers.

Pre-operative challenges

Suffering from distressing symptoms “Yeah, when I go to sleep at night I feel my toes that are numb, and then I feel them tingling, and then I feel like I need this to end. I need the numbness to go away.” (78, female patient, aortobifemoral bypass) Facing one’s death “Let’s see, the last big sadness thing, oh, I know the last thing that made me cry. I called a couple of people to tell them goodbye because I thought I was dying…I was in deep depression for about four days.” (76, female patient, pulmonic valve replacement) Enduring other emotional traumas “Right about the time [of diagnosis] we got news that my son was killed in an accident. So, we were dealing with all of that, and that just made this whole thing more difficult.” (70, male patient, Whipple) Pre-existing mental health issues “Emotionally, I think that he did have a heart attack a year and a half ago and we noted that he’s developed a lot of anxiety like to leave the house and to be far away from home.” (53, female caregiver, CABG)

Post-operative challenges

Significantly limited physical abilities “But he goes and takes walks every day, but he’s like bored with that. He would love to be riding, doing his mountain biking, which is not happening yet.” (70, female caregiver, Whipple) Upsetting physical changes after surgery “I knew I was not going to be happy about it. I knew I was going to have a bag. I knew all this good stuff because it had been explained to me.” (77, male patient, cystectomy) Disappointing prognosis “And the post surgery pathology report was not good, so we’re kind of down about that…It’s just dealing with the, it’s not over yet. We were hoping that the surgery was going to be definitive and it would be over.” (69, male patient, Whipple) Conflicts between caregiver and patient “She did lash out a little bit once in a while. But then it would calm down. She would get hurt with little things, and things that she would think, why don’t you notice this? Well, because I haven’t been doing housework for the last 50 years.” (79, male caregiver, hepatectomy) Pre-existing mental health issues impacting recovery “I just think his motivation and strength are not quite where they were prior to surgery…He is still sleeping a lot. I worry that might be his depression, but I don’t know.” (72, female caregiver, craniectomy and microvascular decompression)

Following surgery, caregivers and patients both identified the development of additional sources of distress including frustration due to physical limitations during recovery, dealing with unanticipated side effects, adjusting to physical changes, such as scars or ostomies, and disappointment when realizing they may require further treatment (Table 2). Many concerns that were identified in the immediate post-operative period were still present at the 3-month interview, particularly those regarding prognosis and disease recurrence. As one caregiver explained, “This is a notorious cancer for coming back. So we’re going to be worried for a long time, I think.” Concerns regarding mental health were again raised, as many patients found themselves unable to engage in activities that had helped their mental well-being prior to surgery, “I don’t have the ability to do coping that I’m familiar with…the best thing you can do for depression is physical activity…there’s very little that I can do [now].” Other patients, while acknowledging changes to their mood and outlook, did not consider it significant enough to seek help, “I was probably more withdrawn, less communicative…[but] I don’t get depressed to the point where I need to see somebody about it.” This contrasted with the viewpoint of many caregivers, who felt that their loved one downplayed their distress. One caregiver explained, “He also has a way of making everything OK, I’m fine, and that’s not honest. He’s not fine. And he tells you he doesn’t worry. He does worry, but he’s not going to let on because men don’t do that.”

These challenges to emotional well-being had a significant negative influence on recovery from surgery. These observations were much more common in the interviews with caregivers. Caregivers described how feeling anxious hampered post-operative care, and how complications could initiate or exacerbate those worries, “The first time that they did try to get him up…he developed the cardiac arrythmia, which scared him. And so that unfortunately led to some anxiety about ambulating, he was afraid to get up and walk again after that.” Feeling sad or anxious was identified as limiting motivation, “And I don’t know if it’s really denial, but he’s not really putting an effort into [recovering]…your mindset and your outlook on life has so much to do with how you heal. So, I think when you start off with a bad attitude it just kind of affects the entire process.” Caregivers also described how the patient’s mood or mental health issues led to conflict, which then negatively impacted the caregiving and recovery process, “He’s got his own moods, his own world…he wasn’t a happy camper, which is very stressful for the person caregiving.”

Theme 2: Older adults relied on a combination of personal and social coping strategies to navigate challenges to emotional well-being.

Older adults relied on a number of personal and social recourses to cope, frequently employing several over the course of their surgical experience (Table 3). A very common mechanism was reliance on religious beliefs, particularly to overcome existential stressors, “Well, I wasn’t scared and that’s because of my faith in God…Because I believe in afterlife, so dying is not the end.” Both formal and informal spiritual beliefs were heavily referenced, “I think the spiritual part of me that I get when I go [to the mountains] and just sit there and absorb all that beautiful earth giving energy is huge.” When asked about specific strategies, older adults endorsed a wide range of soothing activities: “reading calms me down”, “a lot of people deal with stress by eating and I’m one of those people” and “If I’m feeling a lot of stress, whether it’s arguing with healthcare…I’ll take a breath, take a minute and smoke a joint”. While others used specific activities as means of avoidance or distraction, “I get into the movie that I’m watching…I stay up til 3 or 4 in the morning to watch as much as I can of it until I can’t watch anymore”.

Table 3.

Personal and social coping strategies used by older adults and caregivers in the perioperative period.

Personal strategies

Relying on faith and spirituality “When you read the Bible or do Bible study it’s encouraging, it builds up your spirit, your spirit gets elevated, you feel more positive about things…I don’t stress about what’s going to happen about my future. And that all goes back to my faith.” (69, male patient, Whipple) Adjusting expectations “The physical aspects of it are what they are, some of that you can’t change. Again, being impatient and wanting to do things, realizing that I just can’t…so it’s accepting that it is a big deal and it’s going to take a while. So yeah, mindset is mostly all you got that you can control.” (68, male patient, Whipple) Building self-efficacy “I think that it’s kind of maybe a positive aspect of the experience, that I have learned that ultimately it is my body and I’m the one who needs to be involved in making decisions about it and having care for it… I learned that I do have the capacity to do that, which I value very much and would intend to really try to take care of going forward in my life.” (71, male patient, lobectomy) Participating in soothing activities “One of my hobbies is building model boats…That’s a big stress reliever…when you concentrate on doing something that requires hand eye coordination and thought to figure things out, your mind is occupied and you tend not to think about the upcoming rough time you’re going to go through.” (70, male patient, CABG)

Social strategies

Identifying a source of emotional support “My husband is always with me so he’s always my advocate…I mean, when I’m irritable or when I was feeling sorry for myself…I mean, he’s been a real rock, is what I can say. I’m very lucky in that way. He has been a real rock about helping with everything.” (82, female patient, hepatectomy) Utilization of a broad social network “Two boys in their late 40’s and they check on me every day…I have two girlfriends, and they ask me all the time, do you need anything?… And then my ex-husband and his wife, I mean that’s been 40 years, but they bought me a shower chair. Oh my gosh. That’s a life saver…But we all get along, and they came the other day and visited for a while, so that was nice. And I do have a gentleman friend, he calls me every couple of days and we laugh and joke.” (76, female patient, pulmonic valve replacement) Mobilization of social support “Identify all your possible support systems and really make a plan if you can, figure out how you can get help… will you work with your daughters or your sons to help with the medical appointments? Not being afraid to ask for help from your social support, both family and friends is super critical” (53, female caregiver, CABG)

In the post-operative period, while many older adults endorsed frustration regarding a perceived slow rate of recovery, some mitigated these feelings by realistically adjusting their expectations, “It was OK to stop, so to speak, and to say OK, you can’t do it all. Because the head can really play some games with you.” They embraced patience, mindfulness, and an openness to receiving help. Through these means, they gained an improved sense of self-efficacy, that allowed them to maintain a positive outlook in the face of otherwise debilitating symptoms, “I learned just about myself, and that is I’m stronger than most people would think.”

In addition to utilizing personal coping mechanisms, older adults relied heavily on various means of social support. While most patients touched upon the importance of instrumental assistance, such as help with household tasks or personal care, emotional support was deemed equally vital. Many patients were able to identify a source of emotional support, typically their spouse. When describing the role of emotional support, one caregiver stated, “We’re from [hometown], so it’s a long drive… Sometimes you talk the whole way and sometimes you just like to have kind of a quiet day. But still, it’s just nice knowing that somebody’s sitting there who cares about you, you know? Several older adults utilized broad social networks to meet their various needs in the peri-operative setting. Notably, patients with limited social resources focused more on the need for identifying those who would provide instrumental support, “Well, if it wasn’t for friends I wouldn’t have had any transportation… if you’re alone, you need to have somebody with you when you come home for maybe a few days or so until you get established.” Whereas patients with robust networks would emphasize the importance of both emotional and instrumental support, “I have a lot of friends who are very supportive, and I have family of course, and my husband most of all…my husband has literally had to pick me up, and sometimes he’s had to take me to the bathroom, he’s had to get me ready and put me in bed.”

Theme 3: Patients and caregivers desired more resources to address mental and emotional needs in the perioperative period.

When older adults and caregivers were probed about the patient’s emotional challenges encountered during their surgical experience, most had not discussed them with their treatment team. “I don’t think we’ve had any contact with anybody at the hospital since then. Not anything to do with emotional support.” While some leaned on their support system, many, particularly those who had more limited social resources, had not shared these feelings with anyone, “I haven’t told anybody about that [anxiety] except yourself, you.” Several expressed gratitude for the interviewer speaking with them, highlighting the need for this type of interaction, “I would just like to say thank you…because I’ve, for the first time, verbalized my thoughts and had to collect them. And having you been willing to just listen to me and share your time and your empathy is something I really do appreciate.”

When searching for sources of support, a few patients turned to their primary care physician, “My [primary care] physician is like real personal and he knows me and he talks with me and he explains stuff.” However, many were frustrated at the lack of attention by their surgical treatment team, “But there was, like I said, just never anywhere in the procedure, either in the hospital or in the recovery process, when I was asked what the experience was like for me as a person and what difficulty I may have been having, either physically or emotionally.” This led some to feel disconnected, “The surgery team is a surgery team, and they kind of get remote after they’re pretty sure everything’s gone OK. So I felt a little abandoned, I do.” This disconnect was exacerbated when patients interpreted the automated communication they received as generic and lacking personal connection, “I got pretty much daily communication from the surgeon’s practice, but it was in the form of an app on my phone…it kind of felt like it was more like their checking off their boxes than an expression of concern for me and my experience.”

While patients mainly focused on the experience of unaddressed emotional needs, caregivers were able to identify the specific resources they felt were lacking to address these needs in the perioperative period. Some caregivers expressed a need for medical treatment for mental health issues, “Whatever they can do to make him feel less anxiety. Treat the anxiety with whatever medication they can.” Others wanted access to counseling services, “I think he would have benefited from having a therapist kind of talk through all his emotions. I’m sure some patients have PTSD, having to go through such a major surgery and wake up in the ICU alone.” The utility of mental health counseling was made analogous to other common post-operative services, such as physical therapy, “I feel like there’s so much from the patient’s perspective that they’re enduring, and just to like have an actual doctor or therapist talk through the emotional piece like post-op would be super beneficial, in addition to just being like hey, do some squats with these weights over your head.” And some felt that it should be routinely incorporated into the post-operative care plan, “I think in addition to, the physical therapist and occupational therapist, it would be a good idea to send in like a family therapist like once a week too, for maybe the first couple of weeks, and just to kind of check in with the patient…If maybe they’re struggling emotionally with having such a drastic physical change in lifestyle.”

DISCUSSION

Using semi-structured interviews, this qualitative study sought to explore the psychosocial experience of older adults as they progressed through the process of undergoing and recovering from a major elective surgery. Older adults and their caregivers described multiple overlapping challenges to their emotional well-being that spanned the course of the perioperative period. To navigate these challenges, they pulled from a variety of personal and social resources, which included, but were not limited to, a heavy reliance on their social network for both emotional and instrumental support. However, even with these avenues for coping, there was a distinct need for additional resources to address the mental health and emotional issues older adults faced while undergoing surgical treatment. These findings highlight a critical component of perioperative care with significant implications for the recovery of older surgical patients.

For this population of older adults who were undergoing high-risk surgery, the presence of significant challenges to emotional well-being was not unexpected.^11,20 However, the qualitative nature of this study allowed us to understand several key findings. First, while these challenges fell into general categories, when they occurred, and how patients interacted with them, was unique to that individual. Second, factors patients identified as impacting their well-being ranged far beyond just the surgery itself, highlighting larger concerns regarding disability, quality of life, and thoughts about impending death. This contrasts with stressors that are identified by younger patients, who focus preferentially on issues such as financial repercussions and the inability to fulfill a caregiving role.^21,22 As such, any interventions need to account for this variability and provide a tailored approach. Importantly, these attempts also need to also consider the backdrop of complex mental health issues that frequently co-exist in older adult surgical patients.

Prior work has shown that high levels of active coping, such as using one’s own resources and problem solving to deal with a stressful event, and low engagement in avoidance mechanisms are associated with higher levels of self-rated health.²³ A similar study conducted in older adults undergoing hip arthroplasty found that these characteristics, along with the use of positive reframing led to decreased levels of anxiety and stress in the postoperative period.²⁴ From our findings, we show that older adults rely on a wide range of personal coping mechanisms, some of which may be more effective than others. Many older adults identified engaging in soothing activities as important to their well-being. This has important implications in the post-operative setting as physical limitations can temporarily or permanently limit participation in such activities.²⁵ As such, assisting patients in finding satisfactory replacement activities may allow them to maintain a more positive sense of health and well-being.

Participants in this study identified social support and particularly emotional support as vital to effectively cope with surgical treatment and recovery. This parallels the findings of quantitative studies which have shown that preoperative social frailty, that is social isolation and a limited social network, is a predictor of both survival and functional outcomes in older surgical patients.^16,26 Much of the current surgical literature has focused on the means by which social networks serve as a source of instrumental support, such as assistance with personal or medical care, transportation, or household tasks.^11,27 However, this study showcases the distinctive role of social support in providing patients with motivation and an increased sense of self-efficacy while undergoing surgical treatment. We were able to identify the unique strategies which patients use to mobilize and augment their social resources, which becomes increasingly valuable for those with more limited social networks. These strategies remain important to consider even in patients who report adequate social support, as older adults frequently overestimate the amount of support they will receive in the postoperative setting.²⁸

A striking finding was the perceived lack of resources to address the complex emotional issues older adults face in the perioperative period. This suggests a much-needed role for targeted interventions. In the younger populations, mindfulness-based interventions in the preoperative setting have been shown to improve psychological well-being following surgery.²⁹ For surgical patients with a pre-existing anxiety or depression, studies show a positive effect of pre-operative psychotherapy.^30,31 Notably, we found that the emotional challenges patients faced as well as the need for additional resources spanned across the perioperative period, from the time of diagnosis to weeks and months following surgery. This suggests that in-hospital services, such pastoral care and case management, may not suffice in addressing the mental and emotional issues that older adult patients face during this time, and instead more longitudinal interventions are required. However, significant barriers for the implementation of such interventions remain. At one major cancer center, only a quarter of older adults who pre-operatively screened positive for psychosocial distress went on to receive any mental health services after their surgery.¹¹ Older adults and clinicians have identified lack of funding resources, competing and complex co-morbid conditions, and stigma related to receiving mental health services as barriers to potential mental health interventions, mirroring the barriers identified in other populations.^32,33 However, this suggests that strategies that have shown promise in other populations, such as educational campaigns, providing access to hotlines and local support groups, and leveraging digital interventions such as telepsychiatry, could facilitate uptake of mental health services by geriatric surgical patients.^34,35

Our study has several limitations. Since our approach was qualitative rather than quantitative, we cannot infer the prevalence of specific challenges to emotional well-being, nor the rates of coping mechanism utilization in this population of patients. Our results were also potentially limited to the areas of discussion that were generated from our interview guide. The most significant weakness was that our study population was recruited from a tertiary academic center and the study demographics (mostly well-educated and white) constrain generalizability. It is quite possible that older adults who are of a marginalized racial, ethnic, or economic group could endorse different challenges, coping mechanisms, or request alternative resources. While this study focused on the experience of older patients, further research would be beneficial to understand how the surgical experience changes across age groups. Lastly, selection bias could have influenced these findings as they reflect the views of those older adults who chose and had the ability to participate in this study.

In conclusion, by leveraging the perspectives of both patients and their caregivers, we were able to describe the broad landscape of psychosocial challenges that older adults face during the perioperative period. While many patients were able to identify and use a variety of coping mechanisms, there remains a need for additional resources and support for these challenges. Although restricted to a single institution, this study identifies several important areas for further research in older adult perioperative care: (1) identifying screening tools to assess emotional stressors in this population, (2) developing interventions that address the longitudinal aspect of these stressors, and (3) determining the effect of these interventions on overall surgical outcomes.