Medically related legal needs and quality of life in cancer care

A structural analysis

Authors


  • Presented in part at the 2006 meeting of the American Psychology–Law Society (APLS) St. Petersburg, Florida, March 2–6, 2006.

Abstract

BACKGROUND.

This study investigated the interface of medical and legal systems by empirically identifying and evaluating the relation of medically related legal needs and patient quality of life and by assessing the degree to which these needs were addressed in standard patient care.

METHODS.

Medically related legal needs were identified in a focus group setting. These needs were subsequently sorted and rated by a sample of 50 mixed-site cancer patients (22 men and 28 women; mean age, 52 years) and subjected to multidimensional scaling and cluster analyses. Participants also rated each need in terms of the extent to which it was met in their medical care and the impact on their quality of life.

RESULTS.

Participants identified 30 medically related legal needs. Multivariate analyses identified 4 distinct medical-legal domains: Health Care Related, Estate Related, Financial, and Employment Related. Participants rated these domains as exerting a significant impact on quality of life. Patients reported that that these needs were not met by their current medical or supportive care.

CONCLUSIONS.

The present study identified a range of medically related legal needs of cancer patients. Despite their importance to patient quality of life, these needs were not met by standard medical and supportive care. Findings underscored the need to integrate legal resources into cancer care as an important component of interventions that enhance patient quality of life. Cancer 2007. © 2007 American Cancer Society.

Although the overall impact of serious illness on quality of life of patients and families has been well documented, the legal needs associated with medical care have, for the most part, gone unexplored. When such examinations have occurred, they have tended to focus on concerns such as healthcare proxy and advance directives,1–3 patient autonomy and end of life care,2–5 and right-to-die conflicts, such as the earlier Karen Quinlan case6 and the more recent debate over the care of Terri Schiavo.7 The general conclusion resulting from an examination of this literature is that the disconnect that typically characterizes relations between medical and legal systems works against optimal care of patients and their families.8 Indeed, it can be argued that these powerful cultural systems are more often embroiled in conflict than engaged in cooperative effort, and it is clear that neither patients, their caregivers, nor their families are well served by the current situation.9

Although obviously important, concerns surrounding end-of-life care represent only a small part of the complex interplay of legal and medical systems. A more fundamental question relevant to the larger patient population is the comprehensive identification of types of legal needs of patients and their families, particularly those facing a potentially life-threatening disease such as cancer.

A number of investigations have explored these needs among patients in general and, more specifically, among cancer patients. An early interview-based report by Mor et al examined service needs of cancer patients and identified 3 broad types of needs, physical, instrumental, and administrative, with legal needs falling into the administrative category.10 A study examining factors considered important in end-of-life care identified a range of legal issues that were rated as important by the majority of participants.11 Similarly, a study by Francoeur reported prevalence and significance of financial and employment needs among cancer patients and their families.12 A retrospective study that documented the need for improved custody planning reported that only 50% of single-parent patient families had developed successful custody plans for their children before the parent's death. Furthermore, in 40% of the cases, children were placed with family members to whom the deceased parents had been opposed.13 Similarly, a study of mothers with HIV/AIDS reported that only 50% had revealed their HIV diagnosis to 1 of their children, and only 57% had plans in place for the care of their children.14

Throughout this literature and prevalent in the broader discussion of respect for patient dignity in medical care is a universal call for enhancement of the sense of control experienced by patients and their family members.15–17 The many benefits associated with perceptions of control by individuals facing problems or crises have also been widely explored in other contexts.18–20 Addressing legal needs associated with medical care and providing resources required to meet these needs would seem to make a critical contribution to a patient's perception of control and active participation in their own care. Despite this, no studies to date have specifically investigated the extent to which cancer patients experience needs related to the legal system and the impact of these needs on patient adjustment and quality of life.

As evinced by the above, legal needs beyond the end-of-life stage have been investigated, for the most part, only obliquely. This was recently remedied by an article authored by Fleishman et al that called for the integration of legal service providers into the cancer care team.21 These authors reported a pilot program that provided legal services to patients with chronic illnesses. Also reported was a pilot survey of cancer patients (n = 20) that involved summary judgments of the impact of legal intervention on selected characteristics of the patient's medical care, stress levels, and family. Overall, the impact of legal intervention was judged to be very beneficial.

Although pioneering and of great interest, these pilot results require further elaboration to fully explore this important aspect of cancer care and to empirically identify legal needs of cancer patients and their families. Additionally, a more complete examination of the degree to which these needs are addressed in current cancer care, and the impact of these legal needs on patient quality of life, would significantly expand our understanding of this important domain. The purpose of the present study was to empirically identify types of legal needs of cancer patients, the extent to which these needs were currently addressed in cancer care, and the impact of these needs on the patient's quality of life.

MATERIALS AND METHODS

Subjects

The sample comprised 50 mixed-site cancer patients (22 men and 28 women; age range, 22–80 years; mean = 52.29 years; standard deviation [SD] = 14.53) drawn from Roswell Park Cancer Institute (RPCI), a National Cancer Institute-designated Comprehensive Cancer Center. To be eligible for participation in the study, patients were required to be able to speak English, to be ages ≥18 years, to be cognitively able to understand and carry out study procedures, and to have a life expectancy ≥6 months. One patient was excluded from the study because of confused mental status. The majority of participants were diagnosed with leukemia (n = 17); other participants had diagnoses of lymphoma (n = 15), gynecological malignancies (n = 9), and a smaller group (n = 9) had various diagnoses. The protocol was approved by the Roswell Park Cancer Institute Institutional Review Board, and informed consent was obtained from all participants.

Analysis

The present study used a multivariate analytic method, namely Concept Mapping.22, 23 Concept Mapping (CM) employs multivariate statistical techniques to assess and portray relations between objects or concepts when underlying dimensions are not easily operationalized. As a first step, CM uses afree-response methodology to identify a group's conceptualizations about a topic. The free-response method is preferred, because it does not limit the scope of potential responses and, therefore, results in less confounding from researcher biases.

After free-response generation of items, multivariate statistical analyses were used to create concept maps, which are visual representations of the group's perceptions of a topic. A multidimensional scaling (MDS) methodology was selected to identify an ecologically valid assessment of medical/legal needs. By using this strategy, it was possible to create a conceptually rich, yet empirically derived, assessment of perceived medical/legal needs. The CM analysis involves a number of specific and operationally defined steps. These include:

  • 1The Focus Statement and Item Generation PhaseDevelopment of a focus statement defines the domain under investigation. The intent of the focus statement was to stimulate production of an inclusive list of specific medical/legal needs. A subgroup of the overall sample (n = 20) generated responses to the following statement: “Often medical care involves needs and decisions across many areas of a person's life. Please list any needs you have experienced or decisions you have made or will make in relation to your illness that involve legal issues. Identify as many specific examples as you can, major and minor.” After the introduction of the focus statement, the participants, prompted by the focus statement, generated a set of responses. These responses defined the conceptual domain under investigation, in this case, medical/legal needs.
  • 2Structuring and Rating the StatementsNext, the subjects' structured the statements by first sorting and then rating each of the items. Participants performed individual unstructured sorts in response to the following instructions: “Sort each of the individual statements into groups of items that are similar and refer to a common content, theme or dimension.” After sorting was completed, the participants rated each item in terms of the extent to which the need was met as part of their medical care and the impact of the need on their quality of life. Ratings were made with a 5-point unipolar scale with the following anchors; 1 = very slightly or not at all, 2 = little, 3 = moderately, 4 = quite a bit, and 5 = very much.
  • 3Multivariate AnalysisSorted items were then analyzed with nonmetric 2-dimensional MDS and hierarchical cluster analysis to identify and graphically represent the content of these domains. All analyses were completed by using the Concept System, which uses 2-dimensional nonmetric MDS to first identify the structure within the data matrix and then to represent the identified structure as a geometric array. The basic data for MDS analyses are measures of proximity, or similarity, between pairs of stimuli, in this case, the sorted statements. The final MDS solution had a Kruskal stress value of 0.13 after 11 iterations, indicating a satisfactory solution.

Following the MDS analysis, the CM program uses Hierarchical Cluster Analysis (HCA) to group the items in the MDS map into clusters of statements that were perceived as similar and, therefore, captured similar concepts. The result of the clustering procedure is described as a structural or concept map that portrays the items, represented as MDS points, grouped into conceptual domains. The final selected solution was identified by using 2 criteria, namely bridging values, an empirical goodness-of-fit measure that quantitatively evaluates the homogeneity of the clusters, and cluster interpretability. Mean bridging values were computed for each cluster across a range of solutions and examined in conjunction with interpretability criteria. Mean appraisal ratings for the final cluster solution were also computed for the extent to which the need was met in standard care and impact on quality of life.

RESULTS

In response to the focus statement, participants identified, sorted, and rated 30 medically related legal needs (See Table 1). Cluster solutions from 2 through 8 clusters were evaluated in terms of bridging values and cluster interpretability, with cluster labels assigned on the basis of item content. The selected MDS and clustering solution resulting from participants' sorting of the statements is portrayed in Figure 1. Four distinct medical-legal need clusters were identified: 1) Health Care Related, 2) Estate Related, 3) Financial, and 4) Employment Related. Table 2 reports the individual items that fell within each cluster.

Figure 1.

Four-cluster concept map of medical-legal needs with cluster labels. Boxes with numbers adjacent to them indicate a specific medical-legal need. Smaller clusters, such as the Financial cluster, suggest more closely related needs as opposed to larger clusters indicating broader dimensions such as the Health Care Related cluster.

Table 1. Medical-Legal Needs
Medical-legal needs
Advance directives
Bills pre and post death, who is responsible
Child custody issues
Credit cards and responsibility for payment
Disability issues
Discharge rights
Distributing property
Do not resuscitate patient/family rights
Education about legal issues
Employment rights – Family Leave Act
Financial planning
Funeral home planning
Health care proxy issues
Inheritance issues
Insurance rights
IRS and tax implications
Living will issues
Long-term care issues
Need for unbiased source of legal information
Ownership Issues – titles auto/home, etc.
Pensions
Probate issues
Rights of family members
Skilled nursing facility regulations and laws
Social Security Issues
Stock ownership issues
Treatment implications – hydration/feeding
Unemployment issues
Veteran's benefits
Will and estate planning
Table 2. Statements by Cluster and Number for the Four Cluster Medical/Legal Needs Solution
Cluster 1Health care related
1Health care proxy issues
2Advance directives
3Living will issues
4Treatment implications – hydration/feeding
5Do not resuscitate patient/family rights
7Discharge rights
8Skilled nursing facility regulations and laws
15Rights of family members
30Long-term care issues
Cluster 2Employment related
6Employment rights – Family Leave Act
9Insurance rights
16Need for unbiased source of legal information
17Education about legal issues
19Unemployment issues
29Disability issues
Cluster 3Financial
13Financial planning
18Social security issues
20Pensions
22IRS and tax implications
23Stock ownership issues
26Veteran's benefits
Cluster 4Wills/Estate related
10Will and estate planning
11Inheritance issues
12Distributing property
14Probate issues
21Ownership issues – titles auto/home, etc.
24Bills pre and post death, who is responsible
25Credit cards and responsibility for payment
27Funeral home planning
28Child custody issues

Participants' appraisal ratings for the impact of the legal issue on their quality of life and the degree to which the need was addressed as part of their current care are shown in Figures 2 and 3. Mean attribute ratings for each of the clusters are graphically portrayed as layers, with higher rated domains exhibiting a greater number of layers. The absolute scale values corresponding to the number of layers for each cluster are found by referring to the Cluster Rating Legend for each figure.

Figure 2.

Cluster rating map indicates the mean impact on quality of life appraisal ratings for the medical-legal needs dimensions. Cluster layers indicate increasing relative impact based on the average cluster rating.

Figure 3.

Cluster rating map indicates the mean appraisal ratings for the degree to which medical-legal needs are addressed in patients' current medical and supportive care. Increasing cluster layers are based on the average cluster rating and indicate relatively greater attention.

Interpretation of the figures portraying the attribute ratings for the clusters requires an appreciation of both the absolute value of the scale points represented by the layers (reported in the figure legend) and the relative ranking of each cluster in relation to the other clusters in the solution. In other words, Cluster A in a particular solution may be least important relative to the other clusters in that solution (a single layer), but in absolute terms, the cluster may be quite important, with a mean importance rating of, eg, 4.0 for the cluster.

The attribute ratings portrayed in Figures 2 and 3 are very informative. The legend for Figure 2 shows that subjects reported that the impact of medical-legal needs on their quality of life was quite powerful across all domains. Greatest impact on quality of life was reported for the Health Care Related, Employment Related, and Financial domains, with Estate Related rated as having relatively less impact, although still quite important in absolute terms (mean cluster rating, 3.34).

Strikingly, however, as illustrated in the legend for Figure 3, the medical-legal needs experienced by the participants are clearly not being addressed, with mean cluster ratings of 2.87 for Health Care Related, 2.37 for Employment Related, 1.97 for Financial, and 1.81 for Estate Related. As may be expected, Health Care Related needs were best addressed, followed by Employment Related needs.

Figure 4 graphically depicts mean appraisal ratings of the 4 medical-legal domains and illustrates the contrast between the impact of medical-legal needs on patients' quality of life and the degree to which these needs are addressed in standard cancer care. Paired t-tests (2-tailed) were used to examine mean differences between the impact on quality of life and degree addressed in current care appraisal ratings for each domain. The mean differences were statistically significant for all of the medical-legal domains; that is t (8) = 21.25, P < .001 for the Medically Related; t (8) = 30.75, P < .001 for the Estate Related, t (5) = 25.47, P < .001 for the Financial, and t (5) = 13.96, P < .001 for the Employment Related clusters.

Figure 4.

Mean ratings for the impact on quality of life and degree to which they are addressed in current care appraisal ratings for the 4 medical-legal needs clusters.

DISCUSSION

Using an innovative methodology that yielded conceptually rich but empirically derived results, the present study identified a range of legal needs of cancer patients. Notably, patients reported that medically related legal needs have a substantial impact on their quality of life. Despite this, the failure of standard medical and supportive care to address these needs is also clearly illustrated.

Our results document the importance of these legal needs to patients undergoing cancer treatment. Not surprisingly, Healthcare-related legal issues were rated as most important with the greatest impact on patient quality of life. Employment-related, Financial-related, and Estate-related legal needs were also, however, rated as having a significant impact on quality of life. These results provide empirical support for the innovative pilot survey findings reported by Fleishman et al.21 Their subjects reported that the provision of integrated legal services had a clearly positive effect with, among other findings, 75% reporting reduced stress and 50% noting a positive effect on family members. Interestingly, 30% reported that provision of integrated legal services enhanced their treatment compliance.

Our findings further document the lack of medically related legal services or direction in the standard of care provided to cancer patients. These results are particularly important in light of the significant impact of medically related issues on patient quality of life. Given the challenges associated with enhancing perceptions of control in patients being treated for cancer, the identification of an addressable intervention target with a positive impact on patient quality of life is noteworthy.

In terms of limitations of the current study, it is clear that our findings are the result of patients' evaluations of the relative importance of identified legal domains. As such, they represent a legally naive interpretation that can be expected to differ from that made by legal professionals who likely would have assigned different weights to the items and domains. Our intent, however, was to evaluate the impact of medically related legal needs from the patients' perspective. Given that, when developing interventions that target the medical-legal interface, the guidance provided by legal practitioners will be vital to the process of helping patients to accurately identify and prioritize legal needs.

In addition, the relative impact of the legal domains identified herein can be expected to vary in relation to sample characteristics. Greater homogeneity of sampled patients in terms of prognosis and/or stage of treatment would likely affect the relative importance and impact of the domains. For patients close to initial diagnosis with early stage disease, for example, the Employment Related domain may be more salient than the Estate Related, with the reverse relation holding for patients with advanced or end-stage disease. Indeed, such variation can also be expected within a single patient as each moves through the cancer-care trajectory. As such, interventions that address these needs would, perhaps, be most effective when they are integrated with ongoing care and are, therefore, most responsive to patients' changing medical, personal, and family situations.

As evinced by the results reported herein, legal needs can, as expected, arise in both the context of the patient's medical care and in broader domains of patient and family functioning. Whereas some may argue that this broader context is beyond the purview of medical care, it is clear from these and other reports that patients link these legal concerns to their medical situation and, further, that this linkage affects their perceived quality of life. The integration of even minimal legal resources into cancer care can be expected to help limit fragmentation of care and the resulting forced transitions among multiple providers, factors identified as significant problems in delivering high-quality medical care.24

From the medical-practice perspective, calls for increased collaboration between physicians and attorneys have recently emphasized shared values as opposed to differences.21, 25, 26 Others have noted that certain practice settings, such as end-of-life care, are often troubled by a convergence of patient choice, family concerns, clinical uncertainties, and institutional interests that produces an environment riddled with crises.9 Based on our findings, addressing this unfortunate situation by providing support for medically related legal needs could result in a positive impact on patient quality of life.

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