Abstract

Assisting patients and their families in complex decision making is a foundational skill in palliative care; however, palliative care clinicians and scientists have just begun to establish an evidence base for best practice in assisting patients and families in complex decision making. Decision scientists aim to understand and clarify the concepts and techniques of shared decision making (SDM), decision support, and informed patient choice in order to ensure that patient and family perspectives shape their health care experience. Patients with serious illness and their families are faced with myriad complex decisions over the course of illness and as death approaches. If patients lose capacity, then surrogate decision makers are cast into the decision-making role. The fields of palliative care and decision science have grown in parallel. There is much to be gained in advancing the practices of complex decision making in serious illness through increased collaboration. The purpose of this article is to use a case study to highlight the broad range of difficult decisions, issues, and opportunities imposed by a life-limiting illness in order to illustrate how collaboration and a joint research agenda between palliative care and decision science researchers, theorists, and clinicians might guide best practices for patients and their families.

Objective

Caregivers of patients with advanced cancer experience physical and emotional strain that can raise their own risk for morbidity and mortality. This analysis was performed to determine whether ENABLE II, a patient-focused palliative care intervention that increased patients’ quality of life, reduced symptom intensity, and lowered depressed mood compared to usual care, would affect caregiver burden.

Methods

Caregivers of patients with advanced cancer from the parent study completed a caregiver burden scale and patients completed quality of life, symptom intensity, and depressed mood measures. Data were collected at baseline, 1 month, and every 3 months thereafter until patient death or the study ended. Decedents’ caregivers were asked to complete an after death interview regarding the quality of care that the patient received.

Results

There were no significant differences in caregiver burden between intervention and usual care conditions. Follow-up analyses showed that higher caregiver objective burden and stress burden were related to lower patient quality of life, higher symptom intensity, and higher depressed mood. Caregivers who perceived that patients had unmet needs at end-of-life reported higher objective burden, and those who perceived that patients were not treated with respect reported higher demand burden.

Significance of results

The results indicate that a successful patient-focused intervention did not have a similar beneficial effect on caregiver burden. Future interventions should focus on caregivers as well as patients, with particular attention to caregivers’ perceptions of patient care, and seek to change both negative and positive effects of informal caregiving.

Objectives

This article describes successful institutionally-based programs for providing high quality palliative care to people with cancer and their family members. Challenges and opportunities for program development are also described.

Data Sources

Published literature from 2000 to present describing concurrent oncology palliative care clinical trials, standards and guidelines were reviewed.

Conclusion

Clinical trials have demonstrated feasibility and positive outcomes and formed the basis for consensus guidelines that support concurrent oncology palliative care models.

Implications for nursing practice

Oncology nurses should advocate for all patients with advanced cancer and their families to have access to concurrent oncology palliative oncology care from the time of diagnosis with a life-limiting cancer.

The Functional Assessment of Chronic Illness Therapy (FACIT) system provides a general, multidimensional measure of health-related quality of life (FACT-G) that can be augmented with disease or symptom-specific subscales. The 19-item palliative care subscale of the FACIT system has undergone little psychometric evaluation to date. The aim of this paper is to report the internal consistency, factor structure, and construct validity of the instrument using the palliative care subscale (FACIT-Pal). Two hundred fifty-six persons with advanced cancer in a randomized trial testing a palliative care psychoeducational intervention completed the 46-item FACIT-Pal at baseline. Internal consistency was greater than 0.74 for all subscales and the total score. Seventeen of the 19 palliative care subscale items loaded onto the four factor solution of the established core measure (FACT-G). As hypothesized, total scores were correlated with measures of symptom intensity (r = −0.73, P < 0.001) and depression (r = −0.75, P < 0.001). The FACIT-Pal was able to discriminate between participants who died within three months of completing the baseline and participants who lived for at least one year after completing the baseline assessment (t = −4.05, P <0.001). The functional well-being subscale discriminated between participants who had a Karnofsky performance score (KPS) of 70 and below and participants with a KPS score of 80 and above (t = 3.40, P <0.001). The findings support the internal consistency reliability and validity of the FACIT-Pal as a measure of health-related quality of life for persons with advanced cancer.

Purpose

This study compared the quality of life (QOL) of long-term survivors of breast cancer and lymphoma who had been treated with standard-dose systemic chemotherapy or local therapy only.

Patients and Methods

Long-term survivors (mean, 10.0 ± 5.3 years after treatment) of breast cancer or lymphoma who had been treated with systemic chemotherapy (breast, n = 141, age = 57.0 ± 10.1 years; lymphoma, n = 66, age = 55.8 ± 13.5 years) or local therapy only (breast, n = 294, age = 65.8 ± 9.1 years; lymphoma, n = 37, age = 50.4 ± 12.8 years) were interviewed by phone using the Quality of Life–Cancer Survivors Tool.

Results

Multivariate analysis of covariance, controlling for sex, age, education, stage of disease, and time since last treatment, revealed that survivors who had been treated with systemic chemotherapy scored significantly lower on overall QOL compared with survivors treated with local therapy only (P = .04). Analysis of covariance on the subscale scores revealed that, compared with survivors who received local therapy, survivors treated with chemotherapy scored significantly lower on the Social subscale (P < .0001), but no differences emerged on the Psychological or Spiritual subscales. There was a statistically significant interaction between treatment and diagnosis (P = .01), as measured by the Physical subscale, indicating that lymphoma survivors treated with chemotherapy scored worse than all other groups.

Conclusion

Important QOL differences emerged between the chemotherapy and local therapy groups, suggesting that long-term QOL may vary depending on the type of treatment and diagnosis.