Care and Treatment Decisions in Cancer: The Role of the Family Caregiver

September 2018 Vol 9, No 9


Original Research
Margaret L. Longacre, PhD
Department of Public Health
Arcadia University
Glenside, PA
Research & Training Institute
Cancer Support Community
Philadelphia, PA
Melissa F. Miller, PhD, MPH
Research & Training Institute
Cancer Support Community
Philadelphia, PA
Mitch Golant, PhD
Research & Training Institute
Cancer Support Community
Philadelphia, PA
Joanne S. Buzaglo, PhD
Research & Training Institute
Cancer Support Community
Philadelphia, PA
Alexandra K. Zaleta, PhD
Research and Training Institute, Cancer Support Community,
Philadelphia, PA

Background: Family caregivers are integral to patient care in oncology, including attending appointments in which care options are discussed or decisions are made. The involvement of caregivers in oncology care will only increase as practice recommendations and policies are encouraging their inclusion. Yet, we do not fully understand the treatment decision-making (TDM) dynamics between patients and their caregivers or the capacity among caregivers to make care decisions. Further, caregivers' communication with a patient or healthcare team (HCT) remains underexplored in understanding shared decision-making.

Objectives: The purpose of this study was to characterize caregivers' involvement in TDM, and, secondarily, to assess their need for help in making care decisions and communicating with the patient and HCT.

Methods: This study was a cross-sectional analysis of 163 individuals in the United States who participated in the Cancer Support Community's online Cancer Experience Registry caregiver survey.

Results: Most caregivers (90.8%) were involved at least "a little bit" in TDM, while nearly half (47.9%) were "very much" involved. Nearly three-quarters (74.4%) of caregivers indicated that decisions about care were shared equally with the patient or were patient-decided with caregiver consultation. Many caregivers (68.7%) needed help making care decisions, which was positively correlated with needing help communicating with the patient and HCT.

Discussion: Many of these caregivers indicated being actively involved in care decisions but did not feel fully prepared to fulfill this role and needed help communicating with the patient and HCT.

Conclusion: Evidenced-based tools and processes are needed to inform and enhance communication between the patient and caregiver dyad as well as among the triad (patient, caregiver, and HCT) about care decisions. To develop such tools, we must first explore barriers to effective communication among all stakeholders. Clinical teams should optimize processes to identify caregivers in the medical record and to use team members, including nurse navigators, to educate and communicate with patients and caregivers about treatment options.

Over 1.6 million people in the United States were expected to receive a new cancer diagnosis in 2017.1 These individuals likely made decisions about how, when, and where to treat their cancer, while possibly considering factors such as length of life, quality of life, and cost of care.2 Supporting patients' expressions of preferences and priorities when deciding about care and treatment—known as patient-centered care—is a marker of high-quality healthcare.3-5 Delivering such care is shown to be associated with lower use of unintended medical services (eg, fewer hospitalizations).6 Thus, understanding how patients make decisions about treatment and care remains vital to the delivery of high-quality cancer care. One important but still relatively underexplored factor is the role of family caregivers in patient care decisions.

Caregivers provide assistance to patients in numerous ways throughout the trajectory of cancer, including attending medical appointments.7,8 The emphasis on integrating caregivers in oncology also continues to strengthen,9 echoing other disease contexts in which caregivers are involved in clinical care as a means to elicit and prioritize goals of care (eg, dementia; older adult care).3,10 The Institute of Medicine has long voiced the need to appropriately involve caregivers in the care of older adults,3,11 while, recently, the National Academy of Sciences stressed the need to enhance the "infrastructure," via policies and practices, to deliver patient- and family-centered care.12 As such, state laws have begun to pave the way to encourage involvement of caregivers in hospital care. Namely, the Caregiver Advise, Record, Enable (CARE) Act is now implemented as law in at least 42 states and territories.13 These state laws vary but generally require that: (1) a patient identify a caregiver (or lack thereof); (2) the caregiver name and contact information be recorded in the medical record of a hospitalized patient; (3) the identified caregiver be made aware of patient discharge in a timely manner; and (4) the caregiver receive training or information (broadly defined) at patient discharge.

Given these practice recommendations and policies, caregiver involvement in clinical care will likely continue to increase. Thus, it is essential to explore caregivers' contributions to patient care decisions to develop processes and tools that ensure that care aligns with patient preferences and values as well as supports caregivers in this role. To date, a small but advancing body of literature explores the caregivers' role in clinical oncology care. The focus of several of these studies has been on the involvement of companions and their communication in clinical care,14-16 while other work has explored caregiver involvement in treatment decision-making (TDM) with an emphasis on conflict among patients and caregivers.17-20 These findings suggest that cancer patients and clinicians support involving caregivers, but that patient and caregiver dyads often disagree on who should lead decision-making20 or experience high decisional conflict about treatment.17 One study noted that disagreement commonly centered on routine treatment decisions, discontinuing therapeutic treatment, and use of hospice care.18 Furthermore, studies both on cancer as well as on older adult care suggest that balancing caregiver involvement with patient autonomy is challenging and can be impacted by sociodemographic factors (eg, sex, race/ethnicity) and the patient-caregiver relationship (eg, spouse or other).14,21,22 In sum, most studies exploring involvement in TDM were qualitative analyses involving small samples of patients, caregivers, and/or providers17-19 and have focused on the level of conflict or interference with patient autonomy.

Few studies have explored the dynamic of how decisions are made (eg, the balance in decision-making) between a patient and the primary caregiver. One report of semistructured interviews of family members of cancer patients (N = 33) noted the range of behaviors of caregivers in treatment decisions, including information exchange, deliberation, and the reaching of an agreement.19

Also not well-known is whether caregivers believe they are capable or prepared to contribute to TDM with or for the patient. Findings indicate that some caregivers feel uncertain about involvement in clinical care (eg, how to talk to the doctor),23 or they might not be asked about what information they need to care for the patient.7 Based on national data from 2015, almost twice the number of cancer caregivers than noncancer caregivers (40% vs 21%, respectively) reported needing more help/information with making end-of-life decisions, and this need was associated with heightened emotional stress.7,24

Why caregivers might feel unprepared to make or assist with treatment or care decisions may be due to their communication with the patient and the healthcare team (HCT). As noted by Gillick,10 in the context of dementia, effective communication between a caregiver and patient (ie, dyad) as well as with the HCT (ie, triad) might facilitate the caregiver role in care decision-making so that decisions are best aligned with the preferences of patients and articulated appropriately to providers. Poor communication between caregivers and HCTs might also hinder the relay of essential information to effectively make care decisions. Findings from a pilot study of caregivers for head and neck cancer patients showed that a high proportion of caregivers wanted more help with communicating and interacting with the HCT, and having greater needs was associated with wanting more information about managing patient pain and distress.23

Thus, the purpose of this study was to characterize caregivers' involvement in cancer TDM. Secondary goals were to explore the degree to which the caregivers needed help in making care decisions and communicating with the patient and the HCT, and to assess the relationship between these factors. We hypothesized that a greater need for help communicating with the patient as well as with the HCT would each be associated with a greater need for help in making care decisions.


Data Source and Sample
The data source for this cross-sectional study was the Cancer Support Community's Cancer Experience Registry (CER) (, an online research initiative to understand the psychosocial experiences of cancer from patients/survivors and family caregivers. The CER was launched online in 2013, and in May 2015 it expanded to include family caregivers, with a caregiver-specific survey designed by an advisory group of experts in caregiving. The sample for this analysis includes only individuals in the United States who completed survey questions about their involvement in TDM as a caregiver (N = 163). Approval was obtained from the Institutional Review Board at Ethical & Independent Review Services, and participants provided informed consent.

Study Measurement
Involvement in TDM
To assess level of involvement in TDM, the primary outcome, caregivers rated how involved they were in cancer TDM (0 = not at all; 4 = very much). To supplement this question, we also asked caregivers to identify the balance of decision-making for medical care between a caregiver and a patient: How do/did you and the patient typically make key decisions about his or her medical care? Response options included: The patient makes his/her own decisions; The patient makes decisions after considering mine; The patient and I make decisions together; I make the final decision after hearing the patient's opinion; and, The patient leaves decisions to me.

Caregiver Sociodemographics and Caregiving Characteristics
Caregivers provided sociodemographic information, including age, race and ethnicity, education level, sex, income, and employment status. Participants provided information about the care recipient's relationship to the caregiver (multiple response options for relatives or friends were collapsed into "spouse/partner or parent" and "other") to consider if caring for a spouse/partner or parent might predict more involvement in TDM than other relatives or friends. These variables were included in these shared decision-making analyses given the findings of variations in caregiver behavior to enhance or detract from patient autonomy by sociodemographics and care status.22 Questions about self-perceived health, including general health status and health status since caregiving, were also included since caregiver health might influence level of involvement in TDM.

To assess general health, caregivers responded to the following question: In general, would you say your health is (0 = poor; 4 = excellent)? To assess health since initiating caregiving, caregivers were asked: Compared to the time before you started caring for someone with cancer, how would you rate your health in general now? Response options were: Much worse than before I started providing care; Somewhat worse than before I started providing care; About the same; Somewhat better than before I started providing care; Much better than before I started providing care; which were collapsed into "worse," "about the same," or "better."

Objective Burden
We collected information on objective burden to examine whether those who cared for patients with poorer prognosis or greater care responsibilities were more likely to be involved in TDM. Participants provided information about number of years providing care as well as the number of hours per week they provided care. Patient clinical data collected from the caregiver included cancer site (per overarching diagnosis category, see Table 1), cancer stage, current care status, and years since diagnosis.

Table 1 Table 1 Table 1

Decisional and Communication Needs
Caregivers were asked to indicate the level of help (0 = none; 4 = very much) they need/needed pertaining to: Making decisions about the patient's care; Ways to communicate with the patient; and Ways to communicate with the patient's healthcare team.


Data analyses were conducted using Stata version 14.2. Descriptive statistics were calculated for sociodemographics, caregiving characteristics, objective burden, and involvement in TDM variables. Further, to address the primary study objective, descriptive statistics were calculated for the involvement in TDM variables. Pearson and Spearman correlations and chi-square tests were used to examine bivariate relationships between the level of involvement in TDM and potential covariates/independent variables: sociodemographic, caregiving characteristics, and objective burden. Variables exhibiting bivariate associations that approached statistical significance (P <.10) were included in hierarchical multiple linear regression analyses as follows: Step 1: sociodemographic variables; Step 2: caregiver characteristic variables; and Step 3: objective burden variables.

To address the secondary study objectives, descriptive analyses were performed to determine caregivers' need for help in making care decisions and in communicating with the patient and the HCT. Pearson correlation coefficient was used to explore the bivariate relationship between need for communication (both with patient and HCT) and need for help making care decisions among those who indicated being highly involved in TDM (eg, "quite a bit" or "very much"). In addition, a multiple linear regression analysis was conducted to explore the relationship between need for help communicating with patient or HCT and need for help making care decisions (dependent variable) while considering level of involvement in TDM.

The sample of caregivers (N = 163) was predominately non-Hispanic white (85.3%), female (78.5%) with a mean age of 53.3 years (SD = 12.2; range 18-85). One-quarter (25.6%) spent 0 to 10 hours weekly caring for a patient, and 22% more than 80 hours. Most (66.2%) participants provided care to their spouse, 22.3% a parent, and 11.5% a friend or relative. See Table 1 for additional caregiver sociodemographic information and caregiving characteristics.

Primary Study Objective: To Characterize Cancer Caregivers' Involvement in TDM
The majority of caregivers (90.8%) reported at least some involvement ("a little bit," "somewhat," "quite a bit," or "very much") in cancer TDM, with 47.9% involved "very much" in TDM. Among those who responded to the question about balance in decision-making (n = 160), 47.5% reported the patient makes/made key decisions about medical care with them, while 26.9% noted the patient made decisions after considering their opinion. Only 18.1% of caregivers indicated that the patient decided alone, and few (4.4%) caregivers decided solely about patient care, and, among these (n = 7), 6 patients had advanced disease.

Variables approaching statistically significant (P <.10) bivariate associations with involvement in TDM were included in hierarchical multiple linear regression analyses as follows: Step 1 (sociodemographic variables): female sex (Pearson's r = .14; P = .075); income <$40,000 (r = –.17; P = .053); Step 2 (caregiving characteristics): caring for spouse or parent (r = .26; P = .001); worse health since caregiving (r = .28; P <.001); Step 3 (objective burden): weekly time spent caregiving (r = .34; P <.001). Regression analysis indicated that 5 predictors (Table 2, Step 3) explained 26% of the variance in level of involvement in TDM (R2 = .262, F(6,146) = 8.6; P <.001). In the final model (Table 2), greater involvement in TDM was associated with higher income (>$40,000; semipartial r = .17; P = .017), caring for a family member (spouse or parent; semipartial r = .18; P = .014), more time per week spent caregiving (semipartial r = .29; P <.001), and reporting worse health since caregiving (semipartial r = .18; P = .012).

Table 2

Secondary Study Objectives: To Describe Caregivers' Need for Help in Making Care Decisions, and to Explore This Need for Help with Needing Help in Communicating with a Patient and the HCT
Among caregivers who responded to the question about need for help making care decisions (n = 150), more than two-thirds (68.7%) needed at least "a little bit" of help with care decisions; less than one-third (31.3%) needed no help, while the remaining caregivers reported their level of needing help as "a little bit" (26%), "somewhat" (22%), "quite a bit" (13.3%), and "very much" (7.3%). A near equal proportion of the caregivers indicated needing help communicating with the patient and the HCT. Over 60% of the sample (n = 151) needed at least "a little bit" of help communicating with the patient (61.6%), with 21.9% needing "quite a bit" or "very much" help. Similarly, 60.8% indicated needing at least "a little bit" of help communicating with the patient's HCT, with nearly one-quarter (24.3%) indicating needing "quite a bit" or "very much" help. Findings on caregiver need for help communicating with the patient or the HCT are presented in theFigure.


At a bivariate level, needing more help making decisions about the patient's medical care was significantly correlated with needing more help with ways to communicate with the patient (Pearson r = .47; P <.001) and needing more help with ways to communicate with the patient's HCT (Pearson r = .64; P <.001) among those highly involved in TDM. In subsequent multivariate analysis (R2 = .446, F(3,143) = 38.3; P <.001), needing more help making decisions about patient care was significantly associated with needing more help communicating with the patient (semipartial r = .21; P = .001), needing more help communicating with the patient's HCT (semipartial r = .40; P <.001), and level of involvement in TDM (semipartial r = .13; P = .04). Thus, independent of level of involvement in TDM, needing help both communicating with the patient and communicating with the HCT were significantly associated with needing help making treatment decisions.

With the aging of the population in the United States coupled with longevity of life, many Americans over the next several decades are expected to receive a cancer diagnosis.25 As such, the role of cancer caregiving, which is already pervasive,7 will only increase. Practice recommendations in oncology and healthcare as well as the implementation of state laws (ie, CARE Act) have set the groundwork to foster greater integration of caregivers in oncology care.9,11,12 Furthermore, there is heightened attention to the delivery of both patient-centered and value-based care in oncology as well as tremendous advances in cancer therapies (eg, immunotherapy). Thus, continuing to explore the role of caregivers in care and treatment decisions is essential to achieving solutions that benefit not only the patients, caregivers, and clinicians but also the system of care as a whole by providing higher-quality care.

The current study findings substantiate previous work demonstrating that caregivers commonly assist cancer patients and accompany them in clinical care and conversations7,14 and also delineate caregiver perceptions of their level of involvement or balance in decision-making with a patient. Our results indicate that caregivers perceive that patients rarely decide about care without a caregiver, and, most often, patients and caregivers play an equal role in care decisions. These findings support previous findings20 that demonstrated that few cancer caregivers (and patients) prefer unilateral decision-making when it comes to healthcare decisions. The shared decision-making highlighted in our study in the cancer context differs slightly from findings in older adult care. Specifically, older adults receiving primary care were reported to prefer sharing decisions with family and close friends (46.7%; n = 30), but a near equal proportion of patients (43.3%) still made medical decisions independently, and few left decisions to family and close friends (10.0%).26 In comparison, the proportion of patients in our study making decisions alone (as reported by the caregiver) was approximately 18%. Our cancer caregiver findings suggest that cancer might be a circumstance in which patients and caregivers are most often equally or jointly involved in deciding upon treatment with neither taking a fully dominant role, or that caregivers are more present in the care appointment and conversations than other contexts. This point deserves further exploration, including patient and caregiver discrepancies of the caregiver role, but suggests the potential need to inform both patients and their caregivers about treatment options because both are active in the decision-making process. Furthermore, there is additional need to explore the best channels to deliver information to the patient and caregiver dyad and to facilitate communication among patients and caregivers as well as the HCT. This might involve effective use of social workers and nurse navigators, as such roles are established channels to deliver education and support to patients and caregivers.27,28

We also found that among the small number of caregivers fully making decisions for the patient, all were caring for someone with advanced disease. This finding also supports previous findings (eg, dementia) in which patients take a less active role in decision-making because of advanced disease.29,30 Our work, coupled with these findings, reinforce the importance of care planning, including advance directives, early in the process of care to allow for patient contribution. And, as noted by Gillick,10 communication with and involvement of family caregivers might effectively enable the wishes of the patient. Involving caregivers early in care planning might also be particularly important as advanced cancer might present immediately or progress more rapidly compared with other care contexts. Indeed, in a report comparing cancer caregivers with noncancer caregivers, cancer caregivers provide care on average for 1.9 years, whereas noncancer caregivers provide care for an average of 4.1 years.7 Although many reasons for this difference were noted, one potential factor was the shorter duration of cancer on average compared with the other contexts, such as dementia. Furthermore, not only might cancer caregivers be thrust into a decisional role much more suddenly than their dementia caregiver counterparts, but for some cancers there may be many treatment options to consider, which further emphasizes the value of early discussion about patient preferences and advance directives and early integration of the caregiver. Going forward, more work is needed to explore the caregivers' role in decision-making with advanced disease as well as exploration of the quality and timing of these discussions, and the clinicians who can best support these conversations.

The current study findings also support previous work that caregivers are often not prepared for such a role. Namely, we found that most (68.7%) needed at least a little bit of help making decisions about care, while 2 of 10 (20%) considered themselves to need "quite a bit" or "very much" help. If caregivers become more integrated into care via policy and practice change, it is essential, and appropriate, that caregivers are informed and prepared to help patients as well as supported to protect themselves from the recognized stresses of providing care.

Importantly, this study also reinforces findings that caregivers need help communicating with patients and the HCT,23 and that this need relates to a lack of preparedness to make care decisions. As a caregiver, needing help communicating with patients, and particularly with the HCT, was correlated with needing help making care decisions. Thus, the caregivers' communication with patients and HCTs requires further monitoring and study in the coming era of both integrating caregivers and prioritizing patient preferences. Future work must focus on identifying evidence-based strategies and tools to educate patients and caregivers about treatment options and about how to communicate with one another and clinicians. Development of these strategies and tools must first involve exploring and assessing barriers to effective communication among dyads and the triad, including perceived barriers among varied types of clinicians in oncology (physician, nurse navigators, social workers). Such stakeholder input is central to developing effective tools, as well as understanding efficient and effective use of clinical staff such as social workers and nurse navigators in communicating with patients and caregivers related to TDM. Ultimately, efforts must both inform the caregiver of information about treatment options and allow the caregiver to understand patient preferences and relay that information if necessary. This is especially relevant in an aging population amidst the likelihood of comorbidities that can make decision-making and disease management even more complex.

Family caregivers provide many forms of assistance to cancer patients. This study notes the high level of involvement of the caregivers in terms of treatment and care decision-making as well as the need for help in making care decisions. These findings suggest that research efforts are needed to design and evaluate tools and processes that inform caregivers and support them in decision-making if desired by the patient. Evidenced-based tools and processes are needed to inform and enhance communication between the patient and caregiver dyad as well as among the triad (patient, caregiver, and HCT). To develop such tools, we must first explore barriers to effective communication among all stakeholders. Immediately, clinical teams should optimize processes to identify caregivers and to use team members, including nurse navigators, who are best trained to educate and communicate with patients and caregivers about treatment options.

This research is part of an online study conducted by an advocacy and support organization and might represent a more engaged population. However, this is an increasingly common form of data collection in various health contexts and is essential in capturing individuals from diverse geographic regions. The sample was also predominately female, white, and highly educated, and future work should look to explore the topic among a larger and more diverse sample of patients and caregivers. Future research should also further explore the differing dynamics in decision-making and factors that contribute to these differences in balance between patient and caregiver from the perspective of both the patient and the caregiver, as this analysis is limited to the caregiver perspective.

Financial support for this study was provided in part by grants from Amgen Oncology; Lilly Oncology; Takeda Oncology; Genentech, Inc; Novartis; and Janssen Oncology. These are funders of the Cancer Experience Registry, and funding agreements ensured the authors' independence in designing the study, interpreting the data, writing, and publishing the report.
Declarations of conflict of interest: none.


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