The Bereavement Experience of Partners of Patients with Central Nervous System Tumors

Abstract

Objectives

The purpose of this study was to describe the experience of caregivers who have lost a partner to a central nervous system tumor.

Sample and Setting

Bereaved partners (n = 8) of patients with central nervous system tumors enrolled in a dyadic, behavioral randomized control trial were included.

Methods and Variables

Partners participated in a semi-structured qualitative interview to describe their experience surrounding their partner’s death. Descriptive exploratory analysis was used to identify themes emerging from the interviews.

Results

Themes identified in bereaved partners (mean age = 61.25 years, SD = 12.29) experiences were related to Caring for their partner; Separating from their partner; and, Continuing on without their partner.

Implications for Nursing

Bereaved partners of patients with CNS tumors described how difficult it was to experience the patient’s health decline and feeling unprepared for the patient’s death, no matter whether they had advance notice. Interventions targeting cancer caregiver distress to improve the caregiver experience both prior to and following patient death are needed.

Introduction

Patients with central nervous system (CNS) tumors experience a unique range of disease- and treatment-related symptoms, as well as an often rapid decline in physical and mental functioning (Maqbool et al, 2016; Piil et al., 2019; Reblin, Small, Jim, Weimer, & Sherwood, 2017). Given the unique presentation of CNS tumors, caregivers of patients with CNS tumors provide unique patient support and care, which may include coordinating care, monitoring symptoms, administering medications, managing finances, advocating for the patient, and performing physical care tasks without having received formal training (Piil et al., 2019; Sherwood, Given, Given, Schiffman, Murman, Lovely, von Eye, Rogers, & Remer, 2006). In the CNS tumor setting, while serving as the patients’ primary caretaker and advocate, caregivers are faced with their own personal challenges associated with the emotional burden of seeing their loved one suffer and anticipating their rapid further decline and eventual death, loss of social support, and the change from mutually supportive partners to care provider and patient (Piil et al., 2019). With a rapid progression of disease, patients often move quickly from diagnosis to end-of-life, requiring caregivers to constantly adapt to rapidly changing care needs and symptoms, while also feeling powerless to prohibit the eventual patient decline (Reblin, Small, Jim, Weimer, & Sherwood, 2017; Shubart, Kinzie, & Farace, 2008; Wideheim, Edvardsson, Pahlson, & Ahlstrom, 2002). Caregivers often neglect their own physical and mental health, prioritizing changing family responsibilities and caring for the patient, which leaves the caregiver at risk for impaired sleep, depression, and anxiety (Piil et al., 2019; Shubart et al., 2008; Wideheim et al., 2002). As patient functioning declines and death becomes imminent, caregiver burden increases (Hricik, Donovan, Bradley, Given, Bender, Newberry, Hamilton, Given, & Sherwood, 2011; Piil et al., 2019; Shubart et al., 2008; Widheim et al., 2002).

Across cancer settings, caregivers with unmanaged distress before patient death may have risk for complicated grief and distress during bereavement (Garrido & Prigerson, 2014; Lobb, Kristjanson, Aoun, Monterosso, Halkett, & Davies, 2010; Tsai, Pringerson, Li, Chou, Kuo, & Tang, 2016). When compared to persons whose partner dies from other causes, partners of patients with cancer experience poorer bereavement outcomes, including more depression and greater grief (Caerta, Utz, & Lund, 2013). While death expectedness may mitigate negative outcomes in bereavement, partners of patients with cancer face the patient’s death and their own bereavement already emotionally and physically exhausted from caregiver distress, in such a way that they are depleted of resources needed to cope and at higher risk for depression, anxiety, complicated grief, and loneliness (Caerta, Utz, & Lund, 2013). Managing distress in caregiving partners before the patient’s death may protect partners from complicated grief and distress during bereavement (Garrido & Prigerson, 2014; Lobb, Kristjanson, Aoun, Monterosso, Halkett, & Davies, 2010; Tsai, Pringerson, Li, Chou, Kuo, & tang, 2016).

Caregivers of patients with CNS tumors are particularly vulnerable to distress and subsequent poor bereavement outcomes given the unique patient presentation (Reblin, Small, Jim, Weimer, & Sherwood, 2017; Sherwood, Given, Doorenbos, & Given, 2004; Sherwood, Given, Given, Schiffman, Murman, Lovely, von Eye, Rogers, & Remer, 2006). Limited reports have suggested that caregivers of patients with CNS tumors have various unmet needs around preparing for the patient’s health decline, social network support, and management of life situations following patient death (Collins, Lethborg, Brand, Gold, Moore, Sundararajan, Murphy, & Philip, 2014; Coolbrandt, Sterckx, Clement, Borgenon, S., Decruyenaere, de Vleeschouwer, Mees, Dierckx de Casterle, 2015; Piil, Nordentoft, Larsen, & Jarden, 2019; Sherwood, Given, Doorenbos, & Given, 2004). Descriptions of the experience of caring for a patient with a CNS tumor and of bereavement for partners of patients with CNS tumors are needed to provide an evidence base for development and refinement of supportive care interventions. The purpose of this study was to describe the experience of caregivers who have lost a partner to a CNS tumor.

Methods

Bereaved partners of patients with CNS tumor enrolled in a dyadic, behavioral intervention, pilot randomized controlled trial were invited to participate in a single semi-structured qualitative interview to describe their experience surrounding their caregiving and partner’s death. The parent trial tested the feasibility and initial efficacy of a couple-based mind-body intervention versus a waitlist control group (Milbury, Weathers, Durrani, Whisenant, Li, Lim, Weinberg, Kesler, Cohen, & Bruera, 2020). Dyads randomized to the couple-based mind-body intervention received 4 sessions (60 min each) of mindfulness- and compassion-based meditation training aimed to reduce psychological distress in both patients and partners. Dyads randomized to the wait-list control group received standard-of-care as provided by their oncology care team. This study was approved by the institutional review board at The University of Texas MD Anderson Cancer Center.

Sample

The parent trial (n=37 dyads) included patients with a primary or metastatic CNS tumor, who underwent any type of cancer treatment within the last month, had a Karnofsky Performance Status of 80 or above, and had a spouse/romantic partner who was willing to participate. Both patients and partners enrolled in the parent trial were 18 years of age or older, able to speak and read English, able to provide informed consent, and had internet access. Patients were excluded if they regularly participated in psychotherapy or a formal cancer support group, or had cognitive deficits that would impede the completion of self-report instruments (as assessed by the clinical team).

Procedures

For this study, we re-contacted partners who were bereaved within 12 months of enrollment in the parent trial and asked them to participate in an additional interview. From March 2019 through August 2019, 11 patients died within 12 months of study enrollment. We were able to re-contact 8 of the 11 bereaved partners. All agreed to participate in a private, semi-structured interview between 2 and 9 months following patient death, where they would be asked to describe their experience with caregiving and bereavement. Demographic and clinical information was collected by research staff. Qualitative interviews containing open-ended questions were conducted by phone by the first author (MW) who has extensive experience with qualitative interviewing per an interview guide containing open-ended questions developed by the study team. Interviews began with a general question of ‘How do you feel now about your partner’s disease and treatment?’ Additional probe questions were asked when elaboration was needed, including ‘Tell me about your experience of your partner’s disease as it worsened,’ ‘Tell me about your experience of your partner’s death,’ ‘Tell me about your experience since your partner died,’ and ‘What do you see happening in the future?’ Interviews lasted between 30 and 45 minutes, and were digitally recorded and professionally transcribed verbatim. The transcripts were verified against the original audio recording prior to data analysis.

Analysis

Descriptive statistics were used to describe the sample of bereaved partners. Two researchers with experience in qualitative research (MW, MS) initially independently reviewed the transcripts and identified themes using descriptive exploratory techniques (Parse, Coyne, & Smith, 1985). We used MAXQDA 2020 (VERBI Software, 2019) to code the transcripts line-by-line. Codes were identified and then grouped together into categories and then themes (Parse et al., 1985). For bias control and ensuring credibility and dependability in the analysis, two other members of the study team then reviewed and confirmed the findings (KM, SC). The researchers met to review, discuss, and resolve differences in themes to come to a consensus. Detailed notes of discussion and decisions were kept through the analytic process. Participant quotes exemplifying themes were extracted to demonstrate credibility of the findings.

Results

Bereaved partner demographics are summarized in Table 1 along with patient demographic and clinical characteristics. Mean partner age had a range of 32 to 75 years; of the 8 bereaved partners who participated in interviews, 5 were female, 5 were employed and 6 were White, non-Hispanic; all were spousal caregivers. One partner was less than 2 months bereaved, 3 partners were between 3 and 6 months bereaved, and 4 partners were between 6 and 9 months bereaved.

Table 1.

Bereaved partner demographic and patient demographic/clinical characteristics

	Patient (n = 8)	Spousal caregiver (n = 8)
		Range
Age (in years)	-	32–75 years
	-	(n) %
Gender
Male	-	3 (37.5)
Female	-	5 (62.5)
Employment
Employed, full-time	-	5 (62.5)
Employed, part-time	-	2 (25.0)
Retired	-	1 (12.5)
Marital Status
Married	-	8 (100.0)
Ethnicity/Race
White	-	6 (75.0)
Hispanic	-	0 (0.0)
Black	-	1 (12.5)
Asian/Pacific Islander	-	1 (12.5)
Education
High school graduate	-	1 (12.5)
Associate’s degree	-	3 (37.5)
Graduate degree	-	4 (50.0)
Income
$50001-$100000	-	2 (25.0)
More than $100001	-	6 (75.0)
Tumor type
Primary CNS	4 (50.0)	-
Metastatic CNS	4 (50.0)	-
Stage of disease
Grade IV	4 (50.0)	-
Grade of disease
Grade 4 Glioma	4 (50.0)	-
Treatment history
Surgery	4 (50.0)	-
Chemotherapy	6 (75.0)	-
Radiation therapy	8 (100.0)	-
Months bereaved
Less than 3 months	-	1 (12.5)
3–6 months	-	3 (37.5)
6–9 months	-	4 (50.0)

Themes from bereaved partner interviews were organized into three categories: Caring for my partner, Separating from my partner, and Continuing on without my partner. Caring for my partner included: Unrelenting focus on caretaking tasks, Relying on our faith, Being supported, Maintaining hope, and Feeling well cared for by the health care team. Separating from my partner included: Grieving my partner’s death, Experiencing my partner’s decline, and Never being prepared. Continuing on without my partner included: Being alone, Having to take on new responsibilities, Reframing my life, and Being supported. Exact quotes providing examples of each theme are presented in Table 2.

Table 2.

Quotes from bereaved partners illustrating themes

Theme	Quotes
THEME CATEGORY: CARING FOR MY PARTNER
Unrelenting focus on caretaking tasks	“You know, he got so weak. … His muscles completely withered away, and he couldn’t get out of bed, and he was so weak. And then I got him a wheelchair. … I didn’t grieve a lot when he was alive because I was too busy taking care of him.” 66-year-old female “Unfortunately, that [caretaking]’s one of my last memories of her. And so that doesn’t make it easier, much less just having to change the diaper and things like that that happened at the very end. So my last couple of memories—no fault to her—it’s just that my last couple of memories are not good.” 63-year-old male
Relying on our faith	“[Patient] and I are super-religious so, I don’t know, we just kind of prayed for it and went with it and just kind of did whatever they asked us to do and we did the best we can do.” 57-year-old female “I pray. I am a strong Christian. I have a very strong church family.” 75-year-old female
Being supported in caregiving	“[Hospice] started out coming in and they told me they were going to come in twice a week to bathe him. … he had already gotten to the point where he literally could not sit up in bed, I could just barely get him up.” 75-year-old female “I didn’t have to deal with any of that. That was a huge burden that I did not have to deal with. If I could ever recommend anything to anybody is get somebody that can help you. Because if you don’t have help, you’re just going to wear yourself out, it’s hard.” 75-year-old female
Maintaining hope	“We have been very hopeful. She went to the hospice care, I mean, at the hospital itself. I was still reading documents and articles of people that have come back from hospice to normalcy.” 32-year-old male “You know, it was a bad, bad, bad diagnosis when he got it. But you always hope that maybe you’re the one that …he gets more time rather than less time.” 75-year-old female
Feeling well cared for by the health care team	“Well, when we were on board at MD Anderson, the team was wonderful, and we got a lot of support, because we thought we could beat it. But it didn’t happen that way.” 62-year-old female “I feel very sad, but she’s gone. I was very pleased with the care she received at MD Anderson, about the compassion, about the doctors, and nurses, the support team, the administration, even the parking was superb. So I was always uplifted by their concern and their acts.” 72-year-old male
THEME CATEGORY: SEPARATING FROM MY PARTNER
Grieving my partner’s death	Before Partner’s Death	After Partner’s Death
	“You know, in some ways, as I look back on other deaths I’ve experienced in my family, to a certain extent I almost feel like I’d been grieving ahead of time. I anticipated the loss. And so when the actual loss comes it’s almost like it’s expected. … that’s not say that it’s been easy.” 75-year-old female	“Well, it’s been a whole totally different world. We were married for almost forty years. And this is really the first time I’ve been pretty much absolutely on my own. And it’s been kind of a culture shock, I would say. Because I don’t really have anybody that I can talk to that you know practically grew up with me. But we used to talk a lot.” 63-year-old female “Every day, I wake up. And you know, the memory of John is not like this huge throbbing pain in my head anymore. It’s just a really strong tug at my heart. But mostly, I’m dealing with the financial issues, his estate, the—you know, the fact that I don’t have this income, I’m selling my house. I mean, I’m just trying to deal with the all the crazy things that happen when you know, your spouse dies. You can’t, “Could you please come back?” You know when I feel better, it all has to be done.” 66-year-old female
Experiencing my partner’s decline	“As it worsened, I had to watch him decline, and he was upset about declining. … so I had to watch him decline and watch him deal with his declining. … It’s sad … to watch somebody decline. And then they actually stop taking visitors because they are insecure … because his cancer was brain cancer, and so he could not talk and communicate as well with others. … he was ashamed of it. So he didn’t want visitors at the end.” 62-year-old female Just that she was there but she wasn’t there. I mean, she was never really in pain a whole bunch, but she just slept a whole bunch, and sometimes didn’t know that I had checked on her two or three hours ago. All of a sudden, she wakes up, and then I’m there, but she doesn’t remember that she saw me two or three hours ago. So it’s just hard to deal with that aspect because you’re losing so much.” 63-year-old male
Never being prepared	“It’s like he dropped like a rock. It was really, really fast, his decline. … It was almost like I was in a fog or something. I mean, I just, I just didn’t realize it was going to happen that fast. … I certainly didn’t think it was only going to be, let’s say two weeks or so.” 75-year-old female “I bought him the wheelchair, and two days later, he was dead. That we went on a little trip … with him in his wheelchair, and we stopped and got some cherries. And two days later, he was dead. It was—The suddenness of his death, it was unexpected. I think he couldn’t breathe. And that’s what killed him.” 66-year-old female
THEME CATEGORY: CONTINUING ON WITHOUT MY PARTNER
Being alone	“Well, it’s been a whole totally different world. We were married for almost forty years. And this is really the first time I’ve been pretty much absolutely on my own. And it’s been kind of a culture shock, I would say. Because I don’t really have anybody that I can talk to that you know practically grew up with me. But we used to talk a lot.” 63-year-old female “Well, my entire life is upside down. I’m selling my house … And since his death, I’ve just been really lonely and depressed … And I just can’t live there by myself. 66-year-old female “When I kept coming home, kept coming home, and there’s nobody here, then having to go through her stuff and through the boxes and through pictures and through all of that, I think that’s when it hit me more.” 63-year-old male
Having to take on new responsibilities	“I’ve had to deal with financial issues—you know, paying bills and stuff like that…I have to live without my husband and continue. He was ten years older, so he was at retirement age, where I’m going to have to work another ten years.” 62-year-old female “Every day, I wake up. And the memory is not like this huge throbbing pain in my head anymore. It’s just a really strong tub at my heart. But mostly, I’m dealing with the financial issues, his estate, the fact that I don’t have this income, I’m selling my house. I mean, I’m just trying to deal with all the crazy things that happen when your spouse dies. It all has to be done.” 66-year-old female
Reframing my life	So I’m selling the house and basically moving back home. It disrupted my entire happily ever after thing that John and I had going. It basically crashed my life.” 66-year-old female “You know, I’m not really sure. I’m still trying to figure out where I’m going. I never planned to have retirement like this where I was by myself. We planned on all kinds of different things we were going to do when we retired, and we didn’t get to do anything.” 63-year-old female “You have to deal with it, but you move on. You get busy. You hang out with friends. You do whatever you need to do.” 63-year-old male
Being supported in bereavement	“[Hospice] have stayed. They actually keep me board for a whole year after his death for any kind of bereavement issues that I might have.” 62-year-old female “The two or three friends that are always checking on me, that’s always nice to have. Getting back into a hobby is good. Trying to get me out of the house and keep me from sleeping until 10 or 11 or 12 o’clock in the afternoon … because I’m more of a night owl than anything, is good.” 63-year-old male

Intertwined throughout all three categories was the importance of being supported and maintaining hope. Support extended from providing medical expertise, to helping with day-to-day caretaking tasks, to providing an emotional outlet and came from the medical team, hospice, friends and family, and their faith or spirituality. Partners discussed the need for greater support from the medical team and hospice at the patient’s end-of-life so that they would be better able to manage caretaking tasks, and the importance of ongoing support as they moved into bereavement. Even with support from hospice, partners still found caretaking tasks consuming and sought additional assistance from friends, family members, and private nursing services. Partners expressed regret that their final memories with the patient were often marred by caretaking tasks, as opposed to meaningful goodbyes.

Partners described the difficulty of experiencing the patient’s health decline, especially when a rapid decline occurred, and feeling unprepared for the patient’s active dying and death. Bereaved caregivers described changes in the patient’s in memory, cognition, behavior, and physical functioning as difficult to observe and manage. Partners felt the rapid decline often experience by patients with primary brain tumors was unexpected and described feeling unprepared to manage both the physical decline and also the emotional experience of losing a loved one so rapidly. Partners underwent multiple, significant life changes following the patient’s death related to both figuring out how to manage daily life without their partner and to adjusting to being alone. Interviewees described needing to learn to manage finances and house-hold tasks, needing to sell and relocate from a shared home, and taking on new employment as they restructured long-term plans. Caregivers in our sample expressed how lonely they felt, how missing the patient was an overwhelming part of their grieving experience, and how they faced an uncertain future. In dealing with loneliness, partners discussed relocating to be closer to family and friends, adjusting to living alone in a previously shared home, and seeking new companionship from family and friends.

Conclusions, implications for nursing practice, and future research directions

Our results highlight potential implications for nursing practice and the ongoing role of the clinical team in supporting the patient and family, as well as the importance of hospice care both before and after the patient’s death. Given that partners of patients with cancer experience poorer bereavement outcomes when compared to partners of patients who die from other causes (Caserta, Utz, & Lund, 2013), and given the unique CNS tumor setting (Reblin, Small, Jim, Weimer, & Sherwood, 2017; Sherwood, Given, Doorenbos, & Given, 2004; Sherwood, Given, Given, Schiffman, Murman, Lovely, von Eye, Rogers, & Remer, 2006), attention is needed to the specific needs of caregivers of patients with CNS tumors. In particular, partners of patients with CNS tumors in our sample described approaching the bereavement period emotionally and physically exhausted from their focus on caretaking tasks, having missed opportunities to connect with the patient. This notion has been previously reported as related to the patient’s cognitive ability at the end-of-life (Coolbrandt, Sterckx, Clement, Borgenon, S., Decruyenaere, de Vleeschouwer, Mees, Dierckx de Casterle, 2015), and suggests a need for supportive care interventions designed to assist caregivers in managing caregiver burden, while also creating opportunities to assist the caregiver in connecting with the patient, even as the patient’s cognitive functioning declines.

Consistent with previous reports, partners in our sample found caretaking tasks difficult to manage even with support from hospice and sought additional assistance from friends, family members, and private nursing services (Piil, Nordentoft, Larsen, & Jarden, 2019). In addition, participants in our study described feeling ill-prepared for a rapid patient health decline and eventual death. Our findings suggest that additional efforts are needed from the clinical team to prepare partners for the often rapid decline in the patient’s health. Living with the constant uncertainty of the patient’s cancer creates the need to cultivate positive emotions such as hope, spirituality, and connectedness with loved ones. Interventions such as mind-body practices that target caregiver distress while also focusing on communication and adaptive coping are needed to mitigate partners’ distress and the resultant poor outcomes that persist after the patient’s death during bereavement. Interventions are also needed to enhance the support provided partners at the patient’s end-of-life when they are struggling to manage caretaking tasks and into bereavement as they adjust to living alone (Collins, Lethborg, Brand, Gold, Moore, Sundararajan, Murphy, & Philip, 2014; Coolbrandt, Sterckx, Clement, Borgenon, S., Decruyenaere, de Vleeschouwer, Mees, Dierckx de Casterle, 2015; Maqbool, Agarwal, Sium, Trang, Chung, & Papdakow, 2016). Bereaved partners in our study described life changes that occurred after the patient’s death that included taking on new responsibilities related to finances, home management, and employment, as described in other studies (Piil et al., 2019). Similar to other reports, partners described loneliness and uncertainty about the future (Sherwood, Given, Doorenbos, & Given, 2004; Collins et al., 2014). Interventions are needed to assist caregivers in adjusting to living alone, managing finances and households, and coping with loneliness and uncertainty.

Future research may address limitations of the current study. Our findings are limited given the small sample size, and should be verified with larger, more diverse samples and in other cancer caregiver populations. In addition, future research should focus on first establishing the relationship between various components of the caregiving experience and caregiver outcomes, including bereavement outcomes. Additionally, development and testing of supportive interventions for partners of patients with CNS tumors are needed which may include education-based interventions for preparing partners for caregiving tasks, the patient’s anticipated rapid decline, and the end-of-life, mind-body interventions to help caregivers manage distress, depression, sleep, and other caregiver symptoms, and support interventions such as provision of respite opportunities for caregivers.

Knowledge Translation:

1. Bereaved partners of patients with CNS tumors described how difficult it was to experience the patient’s health decline and feeling unprepared for the patient’s death, no matter whether they had advance notice.

2. Our results highlight potential implications for nursing practice and the ongoing role of the clinical team in supporting the patient and family, as well as the importance of hospice care both before and after the patient’s death.

3. Interventions targeting cancer caregiver distress that focus on improving the caregiver experience both prior to and following patient death are needed.

Biography

Meagan S. Whisenant PhD, APRN is an Assistant Professor in the Department of Research in the Cizik School of Nursing at the University of Texas Health Science Center at Houston; Stacey Crane PhD, RN, CPON is an Assistant Professor in the Department of Research in the Cizik School of Nursing at the University of Texas Health Science Center at Houston; Mackenzie Stewart, BA is a nursing student at the Cizik School of Nursing at the University of Texas Health Science Center at Houston; Kathrin Milbury PhD is an Associate Professor in the Department of Behavioral Science at The University of Texas MD Anderson Cancer Center.