Abstract
Background and objectives Family members and friends of patients with advanced chronic illness are increasingly called on to assist with ever more complex medical care and treatment decisions arising late in the course of illness. Our goal was to learn about the experiences of family members and friends of patients with advanced kidney disease.
Design, setting, participants, & measurements As part of a study intended to identify opportunities to enhance advance care planning, we conducted semistructured interviews at the Veterans Affairs Puget Sound Health Care System with 17 family members and friends of patients with advanced kidney disease. Interviews were conducted between April of 2014 and May of 2016 and were audiotaped, transcribed, and analyzed inductively using grounded theory to identify emergent themes.
Results The following three themes emerged from interviews with patients’ family members and friends: (1) their roles in care and planning were fluid over the course of the patient’s illness, shaped by the patients’ changing needs and their readiness to involve those close to them; (2) their involvement in patients’ care was strongly shaped by health care system needs. Family and friends described filling gaps left by the health care system and how their involvement in care and decision-making was at times constrained and at other times expected by providers, depending on system needs; and (3) they described multiple sources of tension and conflict in their interactions with patients and the health care system, including instances of being pitted against the patient.
Conclusions Interviews with family members and friends of patients with advanced kidney disease provide a window on the complex dynamics shaping their engagement in patients’ care, and highlight the potential value of offering opportunities for engagement throughout the course of illness.
- advanced kidney disease
- qualitative
- family
- Advance Care Planning
- Chronic Disease
- Friends
- Goals
- Grounded Theory
- Humans
- kidney
- Kidney Diseases
- Patient Care
Introduction
Improvements in public health, health care delivery, and medical technology in recent decades have helped to extend life, but often at the price of increasing patients’ dependence on the health care system (1,2) and on the support of formal and informal caregivers (1,3–7). This is especially true at the end of life. Fewer patients are now dying in the hospital and much of the care previously provided there has shifted to the home and other nonacute settings (8,9). At the same time, the intensity of inpatient care during the final months of life continues to escalate, and the menu of different “life-prolonging” procedures offered late in the course of illness continues to expand (1,8,10–16). Because many patients are unable to participate in medical decision-making as they approach the end of life (17), their family members and friends must now engage with the health care system in ways unimaginable for previous generations, assisting with ever more complex medical care and treatment decisions (17–24).
In their study of bereaved family members of patients who had withdrawn from dialysis conducted almost three decades ago, Roberts et al. concluded that providers “must care not only for the patient, but for his or her family and even friends.” (25) This sentiment is echoed in more recent qualitative studies describing the experiences and perspectives of caregivers and family members of patients with advanced kidney disease as they pertain to specific treatments (e.g., hemodialysis, supportive care) (26–31), advance care planning (ACP) (32), and end-of-life care (33–35). To our knowledge, no prior studies have attempted to characterize more broadly the experiences of family members and friends of patients with advanced kidney disease.
Materials and Methods
As part of an ongoing qualitative study designed to identify opportunities to enhance ACP for patients with kidney disease at the Veterans Affairs Puget Sound Health Care System in Seattle (VAPSHCS), Washington (36), we learned about the experiences of family members and friends identified by enrolled patients. Potentially eligible patients were receiving (or had received) care in the renal clinic or dialysis unit at the VAPSHCS and had an eGFR<20 ml/min per 1.73 m2 on at least two occasions 3 months apart or were undergoing maintenance dialysis.
Patients who agreed to participate in the study were asked to provide contact information for one or more individuals knowledgeable about their illness and care who were then invited to join the study. Also invited to participate in this study were next of kin listed in the medical record of recently deceased patients with advanced kidney disease cared for at our center. All study participants provided written informed consent. The protocol for the overall study was reviewed and approved by the Department of Veterans Affairs (VA) Central Institutional Review Board.
Study Participants
Between March of 2014 and May of 2016, 56 patients with advanced CKD were invited to participate in this study. Of the 27 patients who agreed to enroll, 23 provided contact information for at least one family member or friend. We also invited three bereaved family members of two patients who had been treated with dialysis at our center before death. Of the 29 family members and friends invited to participate, 17 (59%) enrolled, nine could not be reached, and three declined to participate.
Data Collection and Analysis
All participants completed a 45–60-minute semistructured one-on-one interview (Supplemental Appendix) conducted in person or by phone by one team member (J.S.), digitally recorded with their consent, and transcribed verbatim. The interview questions were open-ended and participants were prompted to provide details and examples. Atlas.ti software was used to organize and code the data (Atlas.ti, Scientific Software Development GmbH, Berlin, Germany) and data analyses were based on grounded theory (37). To guard against bias, the analysis began with open coding using an emergent rather than a priori approach. Interviews with family members and friends were randomly assigned to and coded by two of the research team members (A.M.O’H., L.V.M.). A third team member (J.S.) then reviewed all coded interviews and refined, condensed, and organized primary codes into code families (groupings of codes with related meanings). Five members of the research team (A.M.O’H., J.S., L.V.M., E.K.V., and J.S.T.) iteratively reviewed the ongoing data organization to clarify meanings of refined codes and reach consensus on code families. During team debriefings, we returned to the interview transcripts and recordings as needed to ensure that coding refinement remained well grounded in the data and to build consensus in instances where there were differences in opinion between study team members. We continued to conduct interviews and analyze data until reaching saturation, the point at which no new codes were identified.
Results
Participants in this study shared a variety of different relationships with the patient and included spouses (23%), other relatives (65%), and friends (12%). Their mean age was 60±13.6 years, most were women (77%), 53% were white, and 35% were black (Table 1). Below, we describe three overlapping themes that emerged from interviews with these family members and friends.
Characteristics of enrolled patients and family members and friends
Theme 1: Roles of Family Members and Friends Were Fluid over the Course of Illness
Involvement of family and friends in patients’ health care was dynamic, shaped by what the patient needed in order to be able to interact effectively with the health care system, their willingness to involve those close to them, and the ability of those persons to be involved, all of which could change over the course of illness.
It was not uncommon for family and friends to be involved in patients’ care primarily because the patient needed their help getting to clinic appointments. Their involvement might also be driven by the patient’s need for more specific help interacting with providers (Table 2, quotation 1, subject A).
Roles of family members and friends were fluid over the course of illness (Theme 1)
Deteriorating patient health and acute illness were common triggers prompting greater involvement of family and friends. One patient’s mother described the “long, hard year” she had spent caring for her son after a long hospitalization and rehabilitation after bowel surgery. She spoke of how her own role had shifted during the course of his illness, depending on whether he could make decisions for himself, and how, at times, she had prioritized his care above all else (Table 2, quotation 2, subject B).
Greater involvement of family and friends could also reflect their evolving understanding of the patient’s needs and limitations in interacting with the health care system. The bereaved wife of a man who had received peritoneal dialysis during the final years of his life told the story of how she first became involved in his care when she “realized he wasn’t telling her (the doctor) anything.” From that time onward, she resolved to keep notes on his complaints, accompany him to all of his clinic appointments, and speak up when he did not (Table 2, quotation 3, subject C).
Involvement of family and friends was also critically dependent on the patient’s readiness to involve them, which could change over time. A patient’s wife described how her husband “knew for a period of time that his kidneys were failing but he didn’t tell me until he had to pretty much go on dialysis” and went on to describe how she became more involved in his care thereafter (Table 2, quotation 4, subject D). Another patient’s mother described his growing isolation from family members over the course of illness (Table 2, quotation 5, subject E).
Theme 2: Involvement of Family and Friends Was Strongly Shaped by Health Care System Needs
The roles played by family and friends were also strongly driven by the needs of the health care system, which could change over the course of illness. Family members and friends described filling gaps left by the health care system that might be invisible to, or taken for granted by, providers. A daughter described having to make judgement calls about whether to send her mother to the hospital when contacted by nursing home staff, “She’ll say, ‘call my daughter and ask her’” (Table 3, quotation 1, subject A). She also described her work to discuss treatment preferences with her mother (Table 3, quotation 2, subject A). Another patient’s mother described a stressful situation where another member of their family had to track the patient down after he had been hospitalized and provide key information about his medical history not accessible to the health care system (Table 3, quotation 3, subject E).
Roles of family members and friends were shaped by the needs of the health care system (Theme 2)
Beyond filling gaps left by the health care system, the explicit roles that family and friends could play were at times constrained, and at other times expected by providers. Earlier in the course of illness, family and friends described accessing providers and otherwise engaging with the health care system on the patient’s behalf as quite challenging. A patient’s mother expressed frustration that the health care system did not reach out to her directly. Her comments reflect a lack of familiarity with the inner workings of the health care system that might be expected for someone excluded from the patient’s care: “That’s why I say I get upset with the VA, because I think … they should contact me … maybe they don’t even know that I exist, they must because you are calling me. So, I feel that the family should be involved in all of this” (Table 3, quotation 4, subject E).
The daughter of a man receiving peritoneal dialysis recalled the challenges of staying involved in her father’s medical care before he started dialysis. Her comments illustrate how family members and friends must often operate within the inflexible structure of a health care system built around face-to-face interactions between patients and providers. She also spoke of how her ability to participate in her father’s care was limited by competing priorities in her own life (Table 3, quotation 5, subject F). Once her father started peritoneal dialysis treatments she found it much easier to access his providers and to be involved in his care, and she reflected on how this would have been helpful to her earlier in the illness trajectory.
Comments from other study participants reinforce that when patients had advanced illness or were facing critical treatment decisions, family members and friends encountered fewer barriers to involvement, with providers seeming to welcome, and even count on, their involvement. The bereaved wife mentioned earlier reflected on how later in the course of his illness, her husband’s providers “fell in love” with her because her work to articulate his concerns had allowed them to “get their job done” (Table 3, quotation 6, subject C).
At times of critical treatment decisions, family and friends might even function almost like emissaries of the health care system, convincing patients to accept treatments that were being offered (Table 3, quotation 7, subject G). In emergency situations, family members could find themselves in the position of having to assist with major treatment decisions despite having little or no prior involvement in the patient’s health care. A patient’s sister voiced her understanding that providers would “hunt people down” for assistance with end-of-life decision-making when patients were incapacitated, and suggested that this might be “a bad time to have to hunt people down … for that” (Table 3, quotation 8, subject H). She described how one of their family members had been faced with making end-of-life decisions for a relative and “didn’t even know she was next in line.”
Theme 3: Sources of Tension and Conflict
Family members and friends described multiple sources of tension in their interactions with patients and the health care system. In speaking of her frustration that her husband was slow to “trust” his providers in matters concerning his health, the bereaved wife mentioned earlier commented: “you’re not allowed to put a gun to his head and say ‘This is the way it has to be’” (Table 4, quotation 1, subject C). Interactions with patients and the health care system sometimes required that family and friends tread a fine line between upholding the patient’s wishes and doing what they felt was in the patient’s best interest. A daughter spoke of how she felt conflicted about her mother’s desire to be resuscitated “when I know that she should, at some point, let go” (Table 4, quotation 2, subject A). Another patient’s mother worried that she might not be able to set aside her own wishes in order to support his desire not to be resuscitated (Table 4, quotation 3, subject B).
Sources of tension and conflict (Theme 3)
Interactions with the health care system on the patient’s behalf could also be a source of embarrassment or discomfort for family members and friends. A patient’s mother complained about providers addressing her rather than her son in matters pertaining to his care (Table 4, quotation 4, subject B). Some described pressure to fulfill roles for which they did not feel qualified. For example, a daughter explained how when reviewing information from providers with her mother she would “try not to put in too much. I’m not a doctor” (Table 4, quotation 5, subject A).
Some family members and friends described situations in which they found themselves almost pitted against the patient in interactions with the health care system. A mother spoke of her son’s anger after his niece reported to providers that he had told her he was suicidal (Table 4, quotation 6, subject E). There could also be conflict between patients and their family members and friends around information-sharing and truthfulness that might be exposed during interactions with providers. A patient’s friend described a tense moment during a clinic visit when she learned that the patient’s kidney function was much lower than he had been telling her: “So yeah, basically he is lying and keeping things from me. So, it was not a good scene” (Table 4, quotation 7, subject I).
Discussion
Our findings provide a window on the complex dynamics shaping the involvement of family members and friends in care and planning for patients with advanced kidney disease. The picture that emerges is of a multidimensional—sometimes chaotic—process of engagement comprised of several interrelated dynamics, each of which may shift during the course of illness. These include the help that patients need to interact with the health care system, the readiness of patients to involve those close to them and of these individuals to be involved, and the willingness of providers and health care systems to engage patients’ family members and friends.
The time when the health care system actively sought out family and friends—which tended not to occur until late in the course of illness—did not always coincide with the time when they were ready to be involved, or when patients were ready to involve them. Lack of harmony between these separate but related dynamic processes created situations where family and friends could be alternately excluded when they wanted to be more involved, or expected to assume roles for which they were not prepared. Our findings echo the jarring and asynchronous patterns of interaction with the health care system described almost two decades ago by bioethicist Carol Levine, who noted how her visibility as a caregiver varied depending on how sick her disabled husband was (38). The strong role of the health care system in scripting interactions with patients’ family members and friends noted in our study also resonates with findings of anthropologists Ann Russ and Sharon Kaufman (23). A bereaved wife enrolled in their study recalled how she would receive a phone call from the hospital “whenever they wanted consent for something” but otherwise had great difficulty reaching her husband’s providers. Our findings regarding the work of family members and friends to fill gaps left by the health care system also echo the ethnographic work of Bookman and Harrington who found that family caregivers of older adults function as a “shadow workforce” striving to fill “dangerous gaps” in a fragmented health care system (39).
The experiences of patients’ family and friends may frame more than just individual recollections. They may determine perceptions of the equity and quality of delivered care, and thus shape public opinion of the health care system (40). Yet, they are easily missed in a system built around interactions between patients and providers, and designed to protect patient privacy and autonomy (18,41,42). Aasen et al. described how the next of kin of elderly patients on hemodialysis “must struggle with both the patients and the health team to be included in the decision-making process.” (29) Family members and friends enrolled in our study described similar struggles to be involved in the patients’ care, but also spoke of situations in which their involvement was more or less expected by providers on the basis of health care system needs. Some described being caught in the middle between the patient and the health care system and even pitted against the patient (30,31,42–46). These findings serve to illustrate how failing to engage family and friends in a way that meets their needs may result in both undue distress and missed opportunities to improve care by shaping their understanding of the health care system and the patient’s care plan.
Our findings beg the question of whether health care systems and providers should be more proactive in seeking to engage family and friends in care and planning throughout the course of illness, in ways reflecting not just the needs of the health care system but also those of patients and those close to them. Although a family-centered approach is intuitive to some specialties and contexts (e.g., palliative care, pediatrics, geriatrics, dementia care), our findings among family members and friends of patients with advanced kidney disease suggest substantial room for improvement in the delivery of family-centered care. Such an approach might involve more systematic and open-ended strategies toward learning about who patients consider important in their lives, with the understanding that this may not be their legal next of kin (47), offering opportunities for those individuals to become involved in their care, learning about and acknowledging the unspoken expectations and hidden work and challenges they may be facing, and educating patients about what might be expected of these individuals in the future (48). This could perhaps begin with steps to make existing care processes more welcoming to patients’ family members and friends (21), especially those that may affect them most directly (e.g., ACP, dialysis modality selection, and kidney transplant), and reimagining how existing resources (e.g., social workers) could be better leveraged to foster a more socially-embedded approach to care. Such endeavors may both afford opportunities for family and friends to become involved in other aspects of the patient’s care and provide a foundation for developing more creative and flexible approaches to engagement (49).
The main limitations of this study relate to transferability and potential for bias. It is possible that this single-center study among family members and friends of patients with advanced kidney disease—primarily female relatives of male veterans—may not be transferable to other settings and populations, especially because the study was not designed to examine systematic differences between participants with differing characteristics (e.g., sex, race). Nevertheless, we suspect that the challenges of engaging family and friends in care and planning for patients with advanced chronic illness likely cut across populations, specialties, and disciplines (44). Because our study only included patients who could provide informed consent, further research is needed to characterize the experiences of family members and friends of patients who lack decisional capacity. More than half of all family members and friends invited agreed to participate and they were often eager to do so, perhaps reflecting their desire to be heard. However, we were not able to capture the perspectives of family and friends who did not agree to participate or those whom patients did not want us to contact (50). Some of the themes identified here (e.g., tension and conflict) are nevertheless all the more striking for having emerged from interviews with the select group of family members and friends who were identified by patients and did participate in this study.
In conclusion, the comments of participants in this study provide a window on the complex dynamics shaping the involvement of family members and friends in care and planning for patients with advanced kidney disease, and highlight the potential value of offering opportunities for engagement throughout the course of illness.
Disclosures
None.
Acknowledgments
We would like to thank Ms. Whitney Showalter for administrative support for this project, Dr. Joan S. Teno at the University of Washington for providing helpful comments on several earlier drafts of the manuscript, and Dr. Robert Pearlman, Chief of Ethics Evaluation at the Department of Veterans Affairs (VA) National Center for Ethics in Healthcare and Staff Physician at the VA Puget Sound Healthcare System for supporting this project. We are extremely grateful to the patients with advanced kidney disease and their family members and friends who participated in this study.
This work was supported by the VA Health Services Research and Development Service (VA IIR 12-126, principal investigator A.M.O’H.). R.T. was supported by a VA Health Services Research and Development Service Career Development Award (CDA-09-206, principal investigator R.T.).
The funding sources had no role in the design and conduct of the study, including collection, management, analysis, and interpretation of the data; in preparation, review, or approval of the manuscript; or in the decision to submit the manuscript for publication.
Footnotes
Published online ahead of print. Publication date available at www.cjasn.org.
This article contains supplemental material online at http://cjasn.asnjournals.org/lookup/suppl/doi:10.2215/CJN.12721216/-/DCSupplemental.
- Received December 12, 2016.
- Accepted February 21, 2017.
- Copyright © 2017 by the American Society of Nephrology
References
In this issue
