Family caregivers’ perspectives on communication with cancer care providers

Abstract

Purpose/Objectives: Family caregivers of individuals living with cancer are often highly involved in communication with healthcare teams, yet little is known about their experiences, needs, and preferences in this role. To address this gap in the knowledge base, researchers sought to explore family caregivers’ perspectives on communication with oncology care providers.

Design and Methods: Researchers conducted a secondary inductive thematic analysis of qualitative interviews originally collected as part of a randomized clinical trial of a supportive intervention for family caregivers of patients with cancer (N?=?63).

Participants: Participants were family caregivers of adult patients with cancer. Most were patients’ spouses/long-term partners (52.3%) or adult children/grandchildren (29.2%). Caregivers of patients with all cancer types and stages of disease progression were eligible for study enrollment.

Findings: Caregivers valued communication with healthcare providers who were attentive, genuine, broadly focused on patients and caregivers’ experiences, sensitive to unmet information needs, and responsive to the potentially different communication preferences of patients and caregivers.

Interpretation: Family caregivers expressed a strong preference for person-centered communication, conceptualized as communication that helps healthcare providers meet the needs of patients and caregivers both as individuals and as an interdependent unit of care, and that acknowledges individuals’ experiences beyond their prescribed roles of “cancer patient” and “caregiver.”

Implications for Psychosocial Oncology Practice: Psychosocial oncology providers’ strong orientation to the biopsychosocial and spiritual aspects of cancer care delivery make them uniquely positioned to support family caregivers. Findings suggest that providers should explicitly communicate their commitment to both patient and family care, involve family caregivers in psychosocial assessment activities and subsequent intervention, and strive to honor patients and caregivers’ potentially different communication preferences.     

‘One also needs a bit of trust in the doctor … ’: a qualitative interview study with pancreatic cancer patients about their perceptions and views on information and treatment decision-making

BackgroundInformation about diagnosis, treatment options and prognosis has been emphasized as a key to empower cancer patients to make treatment decisions reflecting their values. However, surveys indicate that patients' preferences regarding information and treatment decision-making differ. In this qualitative interview study, we explored pancreatic cancer patients' perceptions and preferences on information and treatment decision-making.Patients and methodsQualitative in-depth interviews with patients with pancreatic cancer. Purposive sampling and qualitative analysis were carried out.ResultsWe identified two stages of information and treatment decision-making. Patients initially emphasize trust in their physician and indicate rather limited interest in details about surgical and medical treatment. In the latter stage of disease, patients perceive themselves more active regarding information seeking and treatment decision-making. All patients discuss their poor prognosis. Reflecting on their own situation, all patients interviewed pointed out that hope was an important driver to undergo further treatment also in advanced stages of the disease. Interviewees unanimously emphasized the difficulty of anticipating the time at which stopping cancer treatment would be the right decision.ConclusionsThe findings can serve as starting point for reflection on professional decision-making in pancreatic cancer and larger representative surveys on ethical issues in treatment decision-making in pancreatic cancer.     

Caring for older culturally and linguistically diverse patients with Cancer: Healthcare Providers' perceived barriers to communication

BackgroundDue to various socio-cultural and language related factors, healthcare providers experience barriers when communicating with older culturally and linguistically diverse (CALD) patients with cancer, which can lower the quality of care received by patients and negatively impact healthcare providers. Studies focusing on communication barriers of older CALD patients with cancer and a systematic comparison of those barriers between different healthcare providers have been largely missing.ObjectivesIn order to lay out the healthcare providers' perceived barriers to communication, the present study identified and compared communication barriers among different healthcare providers when caring for older CALD patients with cancer.MethodsAn online survey was conducted among healthcare providers in the Netherlands who identified as being involved in the care of CALD patients with cancer (N = 191), specifically; GPs (N_GPs = 54), specialists (N_specialists = 29), oncology nurses (N_nurses = 77), and pharmacists (N_pharmacists = 31). Providers assessed twelve pre-specified factors on (i) importance and (ii) frequency of these factors as barriers to communication. A composite score by employing the QUOTE (Quality Of care Through the patients' Eyes) methodology was used to rank, and classify factors as either potential or influential barriers.Results and conclusionOverall, low Dutch language proficiency of older CALD patients with cancer, family interpreters providing inadequate translations, not knowing the extent of patients' informational needs, cultural differences in views about healthcare (i.e., illnesses and treatments) and family members blocking communication were found to be influential communication barriers. Healthcare providers showed several differences in what they perceived to be a potential or an influential barrier: Cultural differences in views about healthcare and patients getting treatment in their home countries were important barriers for GPs, while not knowing the patient's contact person was for pharmacists. Nurses perceived the highest number of influential barriers, while specialists perceived the least. We conclude that specific interventions that address differences in perceived barriers among providers are needed, and we highlight potential interventions that involve digital communication tools, such as the Conversation Starter.     

The perception and attitudes of Israeli cancer patients regarding advance care planning

ObjectivesAdvance care planning (ACP) allows patients to acknowledge and document their preferences regarding end-of-life care and to ensure their fulfilment. Several factors were found to be related to patients' motivation regarding this process, such as their fear of being a burden on family members; however, the completion rate of the ACP forms is partial. The current study aimed to evaluate the barriers and motives among Israeli cancer patients regarding ACP, including many older adults.Setting and measurementsAdvanced cancer patients participated in the study. All completed an initial questionnaire to evaluate their basic knowledge regarding the issue. Participants who agreed to talk with a social worker completed a semi open-ended questionnaire which investigated their main motives and barriers regarding the issue.ResultsMost of the patients who completed the ACP forms were older and had lung cancer. They mentioned information and open communication with family and staff members as the main enabling factors. Their main motives were to ensure that the best medical decisions would be made and to avoid unnecessary medical procedures. The main reasons for not completing the forms was no close relative who would agree to take the responsibility as well as timing. Most of the participants did not hear about the issue from sources outside the oncology division.ConclusionsDespite several limitations, the current findings may have important implications regarding ways to establish a more suitable ACP process, adjusted to older patients' needs. This may assist in promoting patients' cooperation with ACP and its implementation in the medical system, including older adults.     

Lived experience and perceived advantages of therapeutic De-escalation: A qualitative study of older patients with breast cancer

IntroductionOne option for therapeutic de-escalation in older women with early breast cancer (EBC) is partial breast irradiation (PBI) instead of whole-breast irradiation (WBI) when the latter has no clear advantages. We aimed to explore the decision-making processes and the lived experiences of WBI and PBI from the perspectives of older women with EBC.Materials and methodsThematic content analysis was performed on qualitative data collected using narrative interviews.ResultsTwenty-two women aged 65 and over participated (ten patients who underwent WBI and twelve who underwent PBI). We identified three themes from their narratives: 1) Acceptance of a paternalistic relationship with physicians, 2) Strong need for an informed choice, and 3) PBI can help people conceal cancer-related physical marks. Narratives underlined participants' preferences for each of the two treatments and their perceptions about therapeutic de-escalation. Misconceptions about therapeutic de-escalation were observed.DiscussionWhen providing information about EBC treatment options, patients' perceived burden of side effects should be considered. Moreover, eliciting the value older patients place on available breast cancer treatments, as well as their related goals and preferences, could foster their participation in the therapeutic de-escalation decision-making process.     

“Often Relatives are the Key […]” –Family Involvement in Treatment Decision Making in Patients with Advanced Cancer Near the End of Life

BackgroundFamily communication has been increasingly recognized as an important factor in decision making near the end of life. However, the role of the family in decision making is less studied in oncology settings, where most patients are conscious and able to communicate almost until dying. The aim of this study was to explore oncologists’ and nurses’ perceptions of family involvement in decision making about forgoing cancer‐specific treatment in patients with advanced cancer.Materials and MethodsQualitative semistructured interviews with 22 oncologists and 7 oncology nurses were analyzed according to the grounded theory approach. The results were discussed against the background of the clinical and ethical debate on family role near the end of life.ResultsWe could identify two approaches shared by both oncologists and nurses toward family involvement. These approaches could be partly explained by different perception and definition of the concept of patients'' autonomy: (a) a patient‐focused approach in which a patient''s independence in decision making was the highest priority for oncologists and (b) a mediator approach with a family focus in which oncologists and nurses assigned an active role to patients'' family in decision making and strived for building consensus and resolving conflicts.ConclusionThe main challenge was to involve family, increasing their positive influences on the patient and avoiding a negative one. Thereby, the task of both oncologists and oncology nurses is to support a patient''s family in understanding of a patient''s incurable condition and to identify a patient''s preference for therapy.Implications for PracticeThis study focused on oncologists’ and oncology nurses’ perceptions of family involvement in decision making about treatment limitation in patients with advanced cancer who are able to communicate in a hospital setting. Oncologists and oncology nurses should be aware of both positive aspects and challenges of family involvement. Positive aspects are patients’ emotional support and support in understanding and managing the information regarding treatment decisions. Challenges are diverging family preferences with regard to treatment goals that might become a barrier to advanced care planning, a possible increased psychological burden for the family. Especially challenging is involving the family of a young patient because increased attention, more time investment, and detailed discussions are needed.     

Unpacking cancer patients' preferences for information about their care

Objective: Patient-centered decision making requires cancer patients be actively involved and feel sufficiently informed about their care, but patients' preferences for information are often unrecognized or unmet by their oncologist, particularly for more distressing topics. This study examined cancer patients' preferences for information about three care-related topics: (1) diagnostic information, (2) treatment costs, and (3) prognosis. We tested whether factors known to influence information preferences (psychological distress, control preferences, and financial distress) were differently associated with information preferences for each topic. Methods: Cancer patients (N = 176) receiving ongoing treatment completed a questionnaire that assessed their out-of-pocket treatment costs, psychological distress, preferences for control over their medical decisions, and the amount of information they desired and received from their oncologists about the three topics. Results: Patients' preferences were less often met for treatment cost information than for the other topics, p < 0.001, with half wanting more cost information than they received. One-third of patients also wanted more prognostic information than they received. Patients' preferences for diagnostic information did not differ as a function of financial burden, distress, or control preferences, ps > 0.05. Preferences for cost information were greater among patients who preferred more control over their medical decisions, p = 0.016. Patients' preferences for prognostic information were greater among those desiring more control and with lower distress, ps < 0.05. Financial burden was not associated with information preferences. Conclusion: Appreciating the variability in information preferences across topics and patients may aid efforts to meet patients' information needs and improve outcomes.     

Older adults' preferred and perceived roles in decision-making about palliative chemotherapy,decision priorities and information preferences

AimPatients with cancer have varied preferences for involvement in decision-making. We sought older adults' preferred and perceived roles in decision-making about palliative chemotherapy; priorities; and information received and desired.MethodsPatients ≥65y who had made a decision about palliative chemotherapy with an oncologist completed a written questionnaire. Preferred and perceived decision-making roles were assessed by the Control Preferences Scale. Wilcoxon rank-sum tests evaluated associations with preferred role. Factors important in decision-making were rated and ranked, and receipt of, and desire for information was described.ResultsCharacteristics of the 179 respondents: median age 74y, male (64%), having chemotherapy (83%), vulnerable (Vulnerable Elders Survey-13 score ≥ 3) (52%). Preferred decision-making roles (n = 173) were active in 39%, collaborative in 27%, and passive in 35%. Perceived decision-making roles (n = 172) were active in 42%, collaborative in 22%, and passive in 36% and matched the preferred role for 63% of patients. Associated with preference for an active role: being single/widowed (p = .004, OR = 1.49), having declined chemotherapy (p = .02, OR = 2.00). Ranked most important (n = 159) were “doing everything possible” (30%), “my doctor's recommendation” (26%), “my quality of life” (20%), and “living longer” (15%). A minority expected chemotherapy to cure their cancer (14%). Most had discussed expectations of cure (70%), side effects (88%) and benefits (82%) of chemotherapy. Fewer had received quantitative prognostic information (49%) than desired this information (67%).ConclusionOlder adults exhibited a range of preferences for involvement in decision-making about palliative chemotherapy. Oncologists should seek patients' decision-making preferences, priorities, and information needs when discussing palliative chemotherapy.     

Medical oncology patients’ preferences with regard to health care: development of a patient-driven questionnaire

BackgroundTo improve quality of care for cancer patients, it is important to have an insight on the patient's view on health care and on their specific wishes, needs and preferences, without restriction and without influence of researchers and health care providers. The aim of this study was to develop a questionnaire assessing medical oncology patients’ preferences for health care based on their own input.Patients and methodsItems were generated using 10 focus group interviews with 51 cancer patients. A preliminary questionnaire was handed out to 681 patients of seven Dutch departments of medical oncology. Explorative factor analysis was carried out on the 386 returned questionnaires (response 57%).ResultsFocus group interviews resulted in a preliminary questionnaire containing 136 items. Explorative factor analysis resulted in a definitive questionnaire containing 123 items (21 scales and eight single items). Patients rated expertise, safety, performance and attitude of physicians and nurses as the most important issues in cancer care.ConclusionThis questionnaire may be used to assess preferences of cancer patients and to come to a tailored approach of health care that meets patients’ wishes and needs.     

Current Status of Advance Care Planning and End-of-life Communication for Patients with Advanced and Metastatic Breast Cancer

BackgroundAdvance care planning (ACP) is a process that supports adults in understanding and sharing their personal values, life goals, and preferences regarding future medical care. We examined the current status of ACP and end‐of‐life (EOL) communication between oncologists and patients with metastatic breast cancer.Materials and MethodsWe conducted a survey among 41 institutions that specialize in oncology by using an online tool in October 2019. Participants (118 physicians) from 38 institutions completed a 39‐item questionnaire that measured facility type and function; physicians’ background and clinical approach, education about EOL communication, and understanding about ACP; and the current situation of ACP and EOL discussions.ResultsNinety‐eight responses concerning physicians’ engagement in ACP with patients were obtained. Seventy‐one (72%) answered that they had engaged in ACP. Among these, 23 (33%) physicians used a structured format to facilitate the conversation in their institutions, and only 6 (8%) settled triggers or sentinel events for the initiation of ACP. In the multivariable analysis, only the opportunity to learn communication skills was associated with physicians’ engagement with ACP (odds ratio: 2.8, 95% confidence interval: 1.1–7.0). The frequency and timing of communication about ACP and EOL care with patients substantially varied among the oncologists. Communication about patients’ life expectancy was less frequent compared with other topics.ConclusionThe opportunity to improve EOL communication skills promoted physicians’ engagement with ACP among patients with metastatic/advanced breast cancer. However, there were still substantial variabilities in the method, frequency, and timing of ACP and EOL communication among the oncologists.Implications for PracticeThis study found that the opportunity to improve end‐of‐life (EOL) communication skills promoted physicians’ engagement in advance care planning (ACP) among patients with metastatic/advanced breast cancer. All oncologists who treat said patients are encouraged to participate in effective education programs concerning EOL communication skills. In clinical practice, there are substantial variabilities in the method, frequency, and timing of ACP and EOL communication among oncologists. As recommended in several clinical guidelines, the authors suggest a system that identifies patients who require conversations about their care goals, a structured format to facilitate the conversations, and continuous measurement for improving EOL care and treatment.     

Should we involve patients more actively? Perspectives of the multidisciplinary team on shared decision-making for older patients with metastatic castration-resistant prostate cancer

ObjectiveTo evaluate perspectives of the multidisciplinary team concerning shared decision-making (SDM) in treatment decisions for older patients with metastatic castration-resistant prostate cancer (mCRPC).Materials and MethodsA survey among Dutch healthcare providers was conducted to assess healthcare providers' perspectives on patient involvement in decision-making and the value of a decision aid (DA) in the decision-making process. Treatment recommendations were assessed using hypothetical cases in which providers were asked to evaluate their likelihood of pursuing listed treatment options.ResultsIn total, 170 Dutch healthcare providers, including 82 urologists, 31 oncologists, and 57 oncology nurses completed the survey. Sixty-two percent of urologists, 65% of oncologists, and 51% of oncology nurses found that mCRPC patients take a passive role in decision-making and delegate treatment decisions to doctors due to advanced age (p = .45). Yet, 70% of urologists, 71% of oncologists, and 63% of oncology nurses agreed that mCRPC patients should be always involved in decision-making (p = .91). Fifty-two percent of urologists and 55% of oncologists stated that they are inadequately trained to apply SDM in clinical practice. Conversely, only 20% of oncology nurses believed that oncology nurses are inadequately trained. Fifty-four percent of all providers considered a DA suitable to support these patients and their healthcare providers in the decision-making process.All hypothetical cases showed variation in treatment recommendations among providers, with each of the five treatments ranging from extremely likely to extremely unlikely.ConclusionsThe wide variation of treatment recommendations observed among the multidisciplinary team suggests that mCRPC patients and their healthcare providers may benefit from implementation of informed SDM. Given the perceived passive role of older patients with mCRPC in decision-making, interventions to engage them are needed. With slightly more than half of respondents finding DAs useful to facilitate the decision-making process, development and implementation of a DA would be an interesting field of research.     

A review and characterization of the various perceptions of quality cancer care

BACKGROUND:

It is important to maintain high‐quality cancer care while reducing spending. This requires an understanding of how stakeholders define “quality.” The objective of this literature review was to understand the perceptions patients, physicians, and managed care professionals have about quality cancer care, especially chemotherapy.

METHODS:

A computerized literature search was conducted for articles concerning quality cancer care in patients who received chemotherapy. Among >1100 identified sources, 25 presented interviews/survey results from stakeholders.

RESULTS:

Patients defined quality cancer care as being treated well by providers, having multiple treatment options, and being part of the decision‐making process. Waiting to see providers, having problems with referrals, going to different locations for treatment, experiencing billing inaccuracies, and navigating managed care reimbursement negatively affected patients' quality‐of‐care perceptions. Providers perceived quality cancer care as making decisions based on the risks‐benefits of specific chemotherapy regimens and patients' health status rather than costs. Providers objected to spending substantial time interacting with payers instead of delivering care to patients. Payers must control the costs of cancer care but do not want an adversarial relationship with providers and patients. Payers' methods of managing cancer more efficiently involved working with providers to develop assessment and decision‐assist tools.

CONCLUSIONS:

Delivering quality cancer care is increasingly difficult because of the shortage of oncologists and rising costs of chemotherapy agents, radiation therapy, and imaging tests. The definition of quality cancer care differed among stakeholders, and healthcare reform must reflect these various needs to maintain and improve quality while controlling costs. Cancer 2011. © 2010 American Cancer Society     

What Goals Do Patients and Oncologists Have When Starting Medical Treatment for Metastatic Lung Cancer?

BackgroundMetastatic lung cancer is an incurable disease that can be treated with systemic therapy. These treatments might prolong survival and reduce symptoms, but they may also cause serious adverse effects. We studied the treatment goals of patients with metastasized lung cancer and their oncologists before starting systemic therapy, concordance between patients’ and oncologists’ goals, and feasibility of these goals.Patients and MethodsThis research was conducted between November 2016 and April 2018 in 1 academic and 5 nonacademic hospitals across the Netherlands. A total of 266 patients with metastatic lung cancer and their prescribing oncologists (n = 23) filled out a questionnaire about their treatment goals and the estimated feasibility of these goals before treatment was started. Additional interviews were conducted with patients and oncologists.ResultsPatients and oncologists reported quality of life (respectively, 45% and 72%), life prolongation (45% and 55%), decrease in tumor size (39% and 66%), and cure (19% and 2%) as treatment goals. The interviews showed that the latter appeared to be often as motivation to stay alive. Concordances between patients’ and oncologists’ treatment goals were low (ranging from 24% to 33%). Patients had slightly higher feasibility scores than oncologists (6.8 vs. 5.8 on a 10-point scale). Educational level, age, religious views, and performance status of patients were associated with treatment goals.ConclusionPatients and oncologists set various goals for the treatment they receive/prescribe. Low concordance might exist because different goals are set or because the patient misunderstands something. Clear communication about treatment goals should be integrated into clinical care.     

French general practitioners' attitude towards breast cancer in older women: A qualitative study

IntroductionIn France, general practitioners (GPs) are usually the first-line healthcare contact for breast cancer (BC) screening/diagnosis in older women, information about therapies, access to cancer specialists, management of comorbidities and follow-up. GPs' practices may influence the factors involved in the unfavorable prognosis of BC in older patients: delay in diagnosis, insufficiently active treatment and the impact of associated morbidities.ObjectiveThe aim of this study was to explore GPs' experience, to understand the factors which shape their care of older women with BC and to identify ways in which this care might be improved.MethodThis was a two-part qualitative study among GPs following COREQ guidelines. We analysed themes arising from group and semi-directive personal interviews.ResultsGPs had diverse attitudes caused by 1/ the GPs' professional values, in response to their mission for local referral, their overall knowledge of the patient's context and wishes; 2/ the impact of comorbidities; 3/ the GPs' own experiences (confrontation with the disease, emotional ties established with the patient, embarrassment about examinations); 4/ prejudicial connotations (therapies judged as being too aggressive). GPs expressed interest for training, for inclusion in a coordinated multidisciplinary organisation with oncologists and geriatricians, confirming the GP's position (to better inform their patients, participate in the therapeutic decision and ensure the continuity of care).ConclusionTo improve their care of older patients with BC, GPs would welcome improved relationships with geriatricians and oncologists, more information support and a more clearly defined role in the geriatric oncology care pathway.     

Colorectal cancer and synchronous liver metastases: An individual case-based qualitative study (CoSMIC-Q)

BackgroundContemporary management of colorectal cancer with synchronous liver metastases is complex. Although there is a large body of cohort data, there is no research exploring patient and clinician perspectives. This study explores the experiences and views of patients following treatment for colorectal cancer with synchronous liver metastases and the clinicians involved in their care.MethodsThis is a qualitative study based on interviews with patients who had completed treatment for colorectal cancer with synchronous liver metastases and their treating clinicians. The interviews were recorded, transcribed and analysed using thematic analysis methods. Codes were developed both horizontally regarding each interview as a standalone hermeneutic unit and vertically by scanning across interviews for specific terms.ResultsFour overarching themes emerged: patients’ experience of initial diagnosis, involvement in treatment, views on the order of staged resections and views about research. For patients, the first consultation is critically important. Patients generally perceived sufficient autonomy in decision-making. In treatment options there is a preference for synchronous surgery balanced by an understanding of the greater risk. Patients did not want liver-first surgery due to the perceived risk of continued seeding from an in situ primary tumour. Clinicians accepted limited evidence for decision making but felt that trials of treatment sequencing were not feasible.ConclusionsThis first qualitative study explores patients' perceptions in colorectal cancer with synchronous liver metastases that are not possible to obtain from quantitative data. CoSMIC-Q demonstrates the importance of incorporating patients’ views into treatment planning particularly where equipoise exists in surgical sequence.     

Barriers to clinical trial enrollment of older adults with cancer: A qualitative study of the perceptions of community and academic oncologists

ObjectivesOncologists can be one of the major barriers to older adult's participation in research. Multiple studies have described academic clinicians' concerns for not enrolling older adults onto trials. Although the majority of older adults receive their cancer care in the community, few studies have examined the unique challenges that community oncologists face and how they differ from oncologist-related barriers in academia.MethodsSemi-structured interviews were conducted by telephone or face-to-face with 44 medical oncologists (24 academic-based and 20 community-based) at City of Hope from March to June 2018. Interviews explored oncologists' perceptions of barriers to clinical trial enrollment of older adults with cancer. Data were analyzed using qualitative content analysis.ResultsOf the 44 participants, 36% were women and 68% were in practice for >10 years. Among the entire sample, stringent eligibility criteria (n = 20) and oncologist concerns for treatment toxicities (n = 15) were the most commonly cited barriers. Compared to academic oncologists, community oncologists more often cited patient attitudes, beliefs, and understanding (n = 9 vs. n = 2) and caregiver burden (n = 6 vs. n = 0). In contrast, compared to community oncologists, academic oncologists more often cited oncologist bias (n = 10 vs. n = 3) and insufficient time/support (n = 4 vs. n = 1).ConclusionsDifferences in perceptions among academic and community oncologists about trials suggest that barriers are multifaceted, complex, and vary by practice setting. Interventions to increase trial accrual among older adults with cancer may benefit from being tailored to address the unique barriers of different practice settings.