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Does One Person Provide It All? Primary Support and Advanced Care Planning for Women With Cancer

Don S. Dizon, Jennifer S. Gass, Christina Bandera, Sherry Weitzen, Melissa Clark

From the Program in Women's Oncology and the Division of Research, Women & Infants' Hospital; and the Departments of Obstetrics & Gynecology, Medicine, Surgery, and Community Health, Brown Medical School, Providence, RI

Address reprint requests to Don S. Dizon, MD, Program in Women's Oncology of Women & Infants' Hospital/Brown Medical School, 101 Dudley St, Providence, RI 02905; e-mail: ddizon{at}wihri.org

	ABSTRACT

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Purpose We challenged a common clinical assumption that female cancer patients designate the same individual who provides them with primary support in advanced care planning roles.

Patients and Methods During 6 months, we conducted a survey of female cancer patients seen in a women's oncology program. Women were asked to name their health care proxy (HCP), emergency contact (EC), and primary support, and to define their own meaning of primary support. The person identified by chart review (C-ID) as that patient's primary contact was also abstracted. The frequency that the same person served all three roles was determined. Concordance between the C-ID and surveyed responses was calculated.

Results Two hundred fifteen (98%) of 219 women agreed to participate. The median age was 58 years (range, 29 to 85 years). Women were surveyed a median of 14.3 months since diagnosis (range, 0.3 to 214 months). Although 80.4% of women surveyed named a first-degree relative to fill all three roles, only 56.7% of respondents identified the same individual for each of these roles. For those in relationships, 54% named their partner in all three roles. The majority of women characterized support as emotional (46.7%) or as emotional and structural (22.6%). Concordance was strongest between the C-ID and both EC and HCP.

Conclusion More than 40% of women with cancer in our sample did not name the same person for support and for advanced care planning roles. We also discovered a lack of uniformity in definitions of primary support. The implications of these findings on decision making and outcomes in women with cancer require additional study.

	INTRODUCTION

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Clinicians often make certain assumptions when it comes to patients and their support systems. One of the most common assumptions is that the person named as health care proxy (HCP) should be the same person to serve in the role of emergency contact (EC), and therefore, must be the person who provides primary support (PS). Of these roles, the only one that has a universally understood meaning is that of HCP, which is defined by the Centers for Medicaid and the Medicare Services as the person "you trust to make decisions about your health care." ¹ The next of kin is often assumed to be the EC, yet the term itself has no universally accepted definition and no protected rights under the law as it relates to medical management.² Finally, PS has no well-defined meaning. The type of support one deems as most important may differ between individual patients and within the context of the doctor-patient relationship. Whether these three roles are served by the same individual or are split among different people within women's social network has not been evaluated extensively.

Social support has been shown to be an important determinant of patient outcomes. Kroenke et al³ showed that women with breast cancer who were socially isolated and without close friends or contacts had a two-fold increased risk of dying from breast cancer. In addition, the relationship between marital status and survival has been examined in patients with other cancers, most notably lung cancer, although contradictory results were reported.^4-10

Because decisions regarding treatment may be a determinant of survival outcomes, we are interested in evaluating the interplay between patients' social network, decision making, and how support may influence their interactions. We characterized patients' responses about the person they named to the advanced care planning roles of HCP, EC, and to that of PS. In addition, we queried patients on their own meaning of PS to determine how women defined this construct. Given that ample evidence suggests that women and men differ in their needs for social support and their adjustment to illness, we chose to focus on women in this initial cross-sectional survey.^11-13

	PATIENTS AND METHODS

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The study was approved by the institutional review board at Women & Infants' Hospital of Rhode Island (Providence, RI). During a 6-month period, consecutive patients observed in Gynecologic Oncology (C.B.), Breast Surgical Oncology (J.G.), and Medical Oncology (D.S.D.) departments of the Program in Women's Oncology were invited to participate in a four-question survey. Following written informed consent to participate, patients were asked the following questions by their physician. Who is your primary support (PS)? What does "primary support" mean to you? Who is your emergency contact (EC)? If something happened to you, who would you want to make decisions for you as your health care proxy (HCP)?

Physicians asked these questions directly in the context of a routine clinical visit and the time to administer the questionnaire was recorded. Patient demographics were collected by chart review and the person recorded as contact person (C-ID) was noted. Survey responses were categorized into immediate family members (defined as having a first-degree relationship with the patient [ie, husband/partner, parent, or child]), other familial relation (for all other familial connections), and nonfamilial relation (all other relationships). In addition, the concordance among the contact person and the HCP, EC, and PS was calculated.

In defining PS, physicians were instructed not to guide answers or provide examples of support. Instead, they were asked to record the responses of their patients in writing. After completion of the survey period, these answers were collected and concealed; two of the authors (D.S.D. and J.S.G.) characterized these responses into the following categories: structural support, defined as serving a specific role for the patient (eg, "takes me to my appointments," "sits with me during chemotherapy"); emotional support, defined as providing psychosocial comfort (eg, "who I turn to when I need to cry," "comforts me when I am down"); informational support, defined as serving a data-gathering or decision-making role (eg, "does my homework for me," "makes sense of what the doctors are saying"); combinational support, defined as serving more than one type of function, such as both structural and emotional; and other, defined as including spiritual and the support offered by the medical treatment team.

Analysis
All analyses were conducted using descriptive statistics. ² or Fisher's exact test was used to compare responses to these support roles by relationship status (married/partnered v no partner) and age ( 60 or > 60 years). Next, we computed a multiple logistic regression model of the likelihood of naming the same person to all three support roles. Finally, we computed statistics with 95% CIs to define concordance between the person identified by chart review and the individuals assigned to the roles of HCP, EC, or PS. We used the following interpretation of : less than 0.2, poor concordance; = 0.21 to 0.4, fair concordance; = 0.41 to 0.6, good concordance; = 0.61 to 0.8, very good concordance; = 0.81 to 1.0, excellent concordance. Statistical analyses were performed using STATA software, version 8.0 (STATA Corp, College Station, TX).

	RESULTS

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Patient Demographic and Clinical Characteristics
Of 219 patients approached, 215 (98.2%) agreed to participate. Patient demographics and clinical characteristics are summarized in Table 1. The majority of women (n = 187; 87%) were white, 19 (9%) were Hispanic, and nine (4%) were African American. The median age of respondents was 58 years (range, 29 to 85 years) and patients were interviewed a median of 14 months after their diagnosis of cancer (range, 0.3 to 214 months). The majority (n = 158; 73.4%) were currently married or in a relationship; of the 57 who were not currently married or in a relationship, 14 (24.6%) had never been married.

Survey Results
The majority (94.8%) of women named an immediate family member as their HCP, three women (1.4%) did not name an HCP, and two women (0.9%) named their medical provider as HCP. Among women in relationships, 68.1% named a partner, 18.5% named a child, and 7.6% named a sibling. Among women not in relationships, 60.0% named a child and 23.6% named a sibling. A significant difference was noted between those with (2.5%) and without (12.7%) a partner in identifying a nonimmediate family member as the HCP (P = .008).

Almost all (92.5%) women named an immediate family member as the EC. For the majority (79.1%) of women in relationships, their partner was identified as the EC. For those not in a relationship, a child or sibling was named 58.0% and 17.5% of the time, respectively. Similar to HCP, there was a significant difference between those with (2.4%) and without (14.0%) a partner in identifying a nonimmediate family member as the EC (P = .002).

Nineteen women (8.8%) interviewed could not name a PS and four (2.1%) identified themselves as their own PS. Of those who identified a PS, 87.0% named an immediate family member. Among women in relationships, 73.0% named their partner and 12.0% named a child. Among women not in relationships, 43.4% named a child and 24.5% named a sibling. Comparable to results for HCP and EC, there was a significant difference between those with (7.8%) and without (20.7%) a partner in identifying a nonimmediate family member as the PS (P = .01).

All but two women were able to give a specific definition of PS. However, for 76 patients (35.3%), PS definitions were nonspecific and could not be characterized. These included the following types of responses: "there for me" (n = 31), "helped me" (n = 8), "most support was given" (n = 6), "first person to turn to" (n = 6), "took care of me" (n = 5), "does everything" (n = 5), "go to" (n = 5), "count on" (n = 4), "gave the most" (n = 3), and "depend on" (n = 3). These responses to the question about PS were removed from subsequent analysis.

Of the remaining 137 responses (63.7%), both reviewers agreed 100% in the categorization of women's definitions of PS. Emotional support was the most common characterization and was given by 64 women (46.7%). Thirty-one women (22.6%) defined support as a combination of emotional and structural functions. For 17 women (12.4%), support was defined in other ways. These included religious support, intimate descriptions of their partner, such as "he is my one and only," medical personnel as support, or themselves as their own PS. For fifteen women (10.9%), support was solely structural. PS as an informational role was described by only seven women (10.9%).

A first-degree relative was named to all three roles for 80.4% of patients (173 of 215). However, only 122 patients (56.7%) chose the same person for all three roles. When those who identified the same person as HCP, PS, and EC were compared with those who identified more than one person to serve different roles, partner status significantly differed between the groups (P = .02). Of those who named one person to all roles, 73.8% were married, 4.9% had a partner, and 21.3% were single. Alternatively, of those who named more than one person, 53.8% were married, 12.9% had a partner, and 33.3% were single. Alternatively, 21.3% were single compared with 33.4%, respectively. Stage at diagnosis was of borderline significance (P = .05), with more of those naming more than one person diagnosed between stages 0 and II than those naming one person (69.9% v 66.4%, respectively). Otherwise, the groups did not differ by median age (P = 1.0), tumor type (P = .21), race (P = .06), or current disease status (P = .99).

Among women in relationships (n = 158), 53.8% of them chose their partner to serve all three roles. Of those who did not, 56% chose a child, 24% chose a sibling, 10% chose a parent, and 8% chose a nonrelative.

Of the total sample, 122 (56.7%) patients were age 60 years and 93 (43.3%) were older than 60 years. The majority (82.8%) of those age 60 years were in a relationship, compared with 61.3% older than 60 years (P < .01). An immediate family member was named as EC in 94.3% of women age 60 years but only in 70.5% in women older than 60 years (P = .0004). There was no difference in the proportion of women naming an immediate family member as PS or HCP: 86.1% and 95.9% (P = .10) for those age 60 years, respectively, and 88.6% and 93.4% (P = .42) for those older than 60 years, respectively. There was also no significant difference by age in the proportion of women relying on the same person for all three roles (59% v 61%; P = .94). Among those in relationships, their partner was named HCP 75.2% of the time for women age 60 years, but only 55.4% of the time for those older than 60 years (P < .01). There was no difference by age in the proportion naming this person as EC (83.2% for women age 60 v 71.9% for women older than 60 years; P = .11) or as PS (68.4% v 69.1%, respectively; P = 1.0). The proportion of women naming their partner to all three roles was 56.4% for women age 60 years and 49.1% for those older than 60 years (P > .1).

We also evaluated the concordance between who was named in the chart as a C-ID and the survey responses (Table 2). There was strong concordance between the C-ID and the roles involving advanced care planning: EC ( = 0.623) and HCP ( = 0.607). However, concordance was not as strong ( = 0.448) for PS. When we computed a multiple logistic regression model, there were no demographic or clinical factors that were associated with naming the same person to all three roles (Table 3).

	DISCUSSION

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In this study, we questioned a common assumption that patients with cancer rely on the same person as HCP, EC, and PS. These roles and related issues are critical within the Privacy Rule of the Health Insurance Portability and Accountability Act.^14,15 Under the Privacy Rule, a health care provider may "disclose to a family member, other relative, or a close personal friend of the individual, or any other person identified by the individual," the medical information directly relevant to such person's involvement with the patient's care or payment related to the patient's care. Significant interpretation is allowed as to whom health care providers may inform, especially in cases when a patient may not be able to make her decisions or wishes known. Although providers may fall back on next of kin, it is important to recognize that this has no clear definition and may leave important relationships to the individual patient unacknowledged. The most obvious example is regarding those in same-sex relationships for whom the law may or may not recognize a partner as next of kin, as it would a heterosexual spouse.

Our data suggest that most women name members of their immediate family when asked who fulfills the roles for advanced care planning, a finding that has been demonstrated previously.^16-20 However, when asked to name a specific person to these roles and as PS, more than 40% did not choose the same person. Even for women in relationships, more than one third named someone other than a spouse as HCP and 20% named someone other than a spouse as EC. We also discovered that patients both define and draw PS from sources that may be very different from the persons named to advanced care planning roles.

The data also demonstrate the variability in definitions of PS for women. The majority of women defined PS as emotional support or a combination of emotional and structural functions. However, support restricted to either solely structural or informational definitions was named by only 11% of women each. That nearly one third of women were unable to characterize PS reflect constraints on the interviewers who, in an attempt to avoid constructing the answers for any individual patient, were not allowed to assist the patient in answering more concisely.

Finally, our data also indicate that the topics addressed in our survey were of interest to women. Ninety-eight percent of women recruited to participate agreed to do so. Although we did not track women who would agree to participate in a subsequent project, a number of women spontaneously expressed interest to the interviewers about participating in any future studies about this topic.

There are a number of limitations to this study. Because it was conducted in a women's cancer program, it is unclear whether our findings can be generalized to men. Certainly, the available literature supports the notion that men and women react to, and require, different means of support around the context of a cancer diagnosis. Left unanswered is whether their choices would differ in terms of whom they would rely on in the context of surrogate decision making. Therefore, future studies should consider asking these questions in a mixed-sex sample.

Second, the majority of patients we surveyed were married at some point, if not at the time of interview. Less than 10% of women were never married. The significance of this is borne out in the proportion of women choosing a child to fulfill particular roles, even among women without partners. As a result, we have limited data about the experiences of single women and more significantly perhaps, women in same-sex relationships.

In addition, only a small proportion of the sample had stage IV, recurrent, or metastatic disease. It could be argued that patients queried at diagnosis may have different responses than those asked after living with the disease for some time or than those who are in remission. Furthermore, those faced with the prospects of recurrent or terminal disease may have particularly salient responses, especially about advanced care planning roles. However, analysis of our data found that stage and current disease status were not significantly different between those naming the same person to all three roles versus those who did not. Certainly questions regarding stability of choices for advanced care planning or PS would require a longitudinal study rather than a cross-sectional analysis to evaluate this further.

We also were unable to use almost one third of responses in our aim to define the meaning of PS because they were too general to characterize. Additional studies with more specific questions about PS will be important to the understanding of women's definitions of PS.

Finally, the survey itself was conducted by physicians during busy clinical practice. Hence, we obtained some information about whom women chose in support roles, but could not address more meaningful questions addressing the how and why of the choices made.

These data confirm our contention that a large proportion of women do not have "one person providing it all," and that the roles of EC, PS, and HCP may come from various sources. It also opens the door to an area of research that has not been developed—namely, the role of the social network in cancer-related communications, decision making, and ultimately, their influence on outcomes. Social network analysis may provide the framework to characterize the degree to which social relationships influence decision making in women with cancer, and may help to discriminate further, beyond marital status, those more likely to use various persons to play important functions in their care and those who rely on one individual. Such information may help delineate the best use of resources for women with cancer and their families. In addition, this information also could influence doctor-patient communication during discussions of important and sensitive topics about cancer treatment and end-of-life care.

In conclusion, our results emphasize the importance of providers asking directly about support systems, especially regarding advanced care planning. We also demonstrate that there is variability in both the types of PS women need and in whom women name as HCP, EC, and PS. Recognizing the assumptions that providers bring to individual patients is critical, and making an effort to define support may have broader implications in the quality of care for women with cancer.

	AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION AUTHORS' DISCLOSURES OF... AUTHOR CONTRIBUTIONS REFERENCES

 
The authors indicated no potential conflicts of interest.

	AUTHOR CONTRIBUTIONS

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION AUTHORS' DISCLOSURES OF... AUTHOR CONTRIBUTIONS REFERENCES

 
Conception and design: Don S. Dizon, Melissa Clark

Administrative support: Don S. Dizon, Melissa Clark

Provision of study materials or patients: Don S. Dizon, Jennifer S. Gass, Christina Bandera

Collection and assembly of data: Don S. Dizon, Jennifer S. Gass, Christina Bandera

Data analysis and interpretation: Don S. Dizon, Jennifer S. Gass, Sherry Weitzen, Melissa Clark

Manuscript writing: Don S. Dizon, Jennifer S. Gass, Christina Bandera, Sherry Weitzen, Melissa Clark

Final approval of manuscript: Don S. Dizon, Sherry Weitzen, Melissa Clark

	ACKNOWLEDGMENTS

 
We thank Tasha Hughes and Vanessa Johnson for their assistance with the manuscript.

	NOTES

 
Presented at the 42nd Annual Meeting of the American Society of Clinical Oncology, June 2-6, 2006, Atlanta, GA.

Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.

	REFERENCES

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION AUTHORS' DISCLOSURES OF... AUTHOR CONTRIBUTIONS REFERENCES

 
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15. Gostin LO: National health information privacy: Regulations under the Health Insurance Portability and Accountability Act. JAMA 285:3015-3021, 2001[Abstract/Free Full Text]

16. Puchalski CM, Zhong Z, Jacobs MM, et al: Patients who want their family and physician to make resuscitation decisions for them: Observations from SUPPORT and HELP—Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment, Hospitalized Elderly Longitudinal Project. J Am Geriatr Soc 48:S84-S90, 2000 (5 suppl)[Medline]

17. Lipkin KM: Brief report: Identifying a proxy for health care as part of routine medical inquiry. J Gen Intern Med 21:1188-1191, 2006[CrossRef][Medline]

18. Azoulay E, Pochard F, Chevret S, et al: Opinions about surrogate designation: A population survey in France. Crit Care Med 31:1711-1714, 2003[CrossRef][Medline]

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Submitted September 9, 2006; accepted January 5, 2007.

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This Article Abstract Full Text (PDF) Purchase Article View Shopping Cart Alert me when this article is cited Alert me if a correction is posted Services Email this article to a colleague Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Save to my personal folders Download to citation manager Rights & Permissions Citing Articles Citing Articles via Google Scholar Google Scholar Articles by Dizon, D. S. Articles by Clark, M. Search for Related Content PubMed PubMed Citation Articles by Dizon, D. S. Articles by Clark, M. Social Bookmarking                            What's this?