Project ENABLE, conducted from 1999–2001, determined the feasibility of early integration of palliative care concepts for patients with advanced cancers at an NCI-designated cancer and community oncology practice. 22
Within this project we assessed selected domains of the quality of end of life care by surveying family proxies after patients’ death using an instrument that was under development at the time, the ADI. Family proxies, who represented half of the decedents who died during this project, were receptive to completing the interview. Non-response was due primarily to an inability to locate an appropriate proxy. Although some respondents became tearful recalling their loved ones’ end-of-life experience, all were able to complete the survey and many shared anecdotes about particularly positive or negative experiences.
High rates of advance directive (AD) completion were reported in our sample; 78% had appointed a durable power of attorney for health care (DPOA-HC) and 81% completed a Living Will. This proportion is markedly higher than the 25% completion rate identified by a chart audit study in the early 1990s. 28
Our completion rates are also higher than those reported in a statewide chart audit study of 782 New Hampshire home, hospital and nursing home deaths from 2002 that found completion rates of 45% and 37% for a durable power of attorney for health care and Living Will, respectively. 29
However, our completion rates are comparable to two more recent reports that used tools and methods that were similar to those used in this study. Teno and colleagues 26
found that proxy-reported AD completion rates were 71% in a national sample of non-traumatic patient deaths (including 25.8% cancer deaths). Using an afterdeath survey of 165 family members of patients dying in 1 of 5 Catholic hospitals in Ohio, Bernal and colleagues found that 70% of proxies indicated that patients had some type of advance directive including DPOA-HC, Living will, or DNR order. 27
It is important to note that this latter study also conducted a chart review in a comparable patient sample and found that 76% of patients had some form of written AD, thus strengthening the accuracy of proxy report. While we cannot rule out the possibility that in our study family could have inaccurately recalled the presence of an advance directive, the consistency of high AD completion rates in multiple more recent studies (that also relied on proxy report) makes this less likely. It may be that public awareness and educational campaigns are having an effect on encouraging the completion of such directives. 26, 27
Perhaps more important than measuring AD completion rates is measuring the communication of end-of-life treatment wishes to the clinician and the overall effect of this communication on end-of-life care.26–28
From a clinical perspective, advance directives are only effective if the presence of such a document or the wishes contained in them are communicated to the clinicians providing their end-of-life care. In our study it was the respondent’s impression that in nearly half of the cases in which an AD was completed it had some or a great deal of effect on treatment decision-making. Respondents in our study also indicated that just over half of the decedents expressed specific wishes or plans about the types of medical treatment they wanted while dying, but only two-thirds of decedents had discussed these wishes with their physician. In the last week of life, for patient’s who expressed preferences for either “life-extending or “pain relieving” courses of action, proxies believed that the decedents’ wishes were followed in 78% of the cases. Teno et al.26
reported that the presence of an AD or patients’ expressed wishes (even in the absence of a written AD), showed a decrease in resource utilization due to the reduced use of life-sustaining treatments compared with those who had not communicated their wishes in this regard. Taken together these results suggest that there is significant room to improve how we elicit, document, communicate, and carry out patient preferences for treatments and care at the end of life. Improved communication between patients and clinicians about patient’s preferences may result in a better match between the care desired and received. It may also effect the use of life-sustaining treatments and thereby decrease overall resource utilization at end of life.
Respondents also identified that communication between the decedent and their oncologists regarding the possibility of death from the illness occurred in nearly three quarters of the sample. Although patients and families routinely report a desire for open communication with their physicians, 29
open communication about end of life treatment wishes has traditionally been a difficult topic for many oncologists to discuss. 27
Patients’ discussions of end-of-life treatment wishes (and the actualization of these preferences) are more likely to occur if physicians feel comfortable approaching this topic with their patients.
Most patients died in their preferred location which for the majority was in their home. Rates of home death were higher in this project compared to our state and national data. According to the New Hampshire (NH) Department of Vital Records, deaths in 2001 occurred in the following locations: 43% hospital; 30% in nursing homes; 20% in home, 4 % in other facilities and 3% other. Nationally up to 50 % of deaths occur in hospitals 30–32
and 25% in nursing homes 33
. One possible explanation for the higher rates of home death and lower rate of nursing home deaths in our sample may be the relatively young average age of decedents (62 years) all of whom had cancer. Perhaps younger patients had more family and community resources to accommodate death at home. In NH, the average age at time of death for nursing home residents (all diagnoses) is around 86 yrs 34
. Another explanation could be the higher rate and longer duration of hospice involvement in this sample compared to the national average. 35
Others have also found associations between advance care planning, improved communication, hospice involvement and a higher rate of home death. 36
Respondents reported that decedents experienced difficult emotional symptoms and pain during the last week of life. Proxy reports of the presence of pain in 68% of decedents (of which 48% had “extremely severe” pain) are disturbing. Although studies of proxy reports about patients’ quality of life/quality of care show good agreement in some observed behaviors (such as support, care giving, and physical functioning), proxies rarely concur with patients’ reports of subjective symptoms (such as pain, mood, and satisfaction). In cases of poor agreement, without exception, family report a more negative view of patients’ quality of life over what the patient reported 20
. This may have been the case in our study. However we were surprised that only 11% of respondents reported distressing dyspnea even though 50% of the decedents died of lung cancer. Rates of 25–50% of unrelieved dyspnea in late stage disease have been reported by others in mixed 21
and lung cancer samples. 37
The lower reported dyspnea rate, over what we would have expected suggests that either family had an inaccurately low recall of this symptom or that it was not present (perhaps because it was well-managed).
The results of this survey should be interpreted with caution and within the context of several very important limitations. First, at the time of this study, the ADI was a new instrument. Adequate reliability and validity had been reported, but only after limited psychometric testing. Some questions may not have been clearly understood and the structured response set (e.g. “yes” or “no”, Likert scales) may not have allowed the proxy to express the complexity of the true situation. However, few measures of the target phenomenon (the quality of end of life care) existed at the time of our project. In particular we were interested in obtaining data that could provide actionable results for our quality improvement initiatives. Results of the dying experience in a national sample of adult deaths using a revised version of the ADI have also been reported. 21, 26
Subsequent cognitive testing of the ADI has resulted in revisions to some of the domains and items that had been included in the version we used. The ADI continues to undergo development and psychometric testing including test-retest reliability of after death proxy reports and pre-death comparisons between patient and proxy responses related to perceptions of health care team communications and patient preferences for care (Teno, Personal Communication May 1, 2007).
Another limitation was the limited ethnic diversity in our convenience sample of patients (and their proxies) which reflects the racially homogeneous local population of our predominantly rural environment. We had a 50% cooperation rate, however most of the non-responders were due to our inability to locate an appropriate proxy months after the patient died. Although there were no demographic differences between respondents and non-respondents relative to decedent age, gender, or disease type. selection bias in other important unmeasured parameters could exist. Finally, the majority of the decedents were treated in an academic, NCI-designated cancer center. Therefore the end-of-life experience reported by family may not reflect the experiences of the majority of persons with cancer who are treated and die in community settings.
Despite these limitations, the findings of this project provided us with useful benchmarks to consider as we designed patient- and family-centered hospital and cancer center quality improvement projects regarding advance care planning, psychosocial care, and pain management at the end-of-life. 38
This survey also provided us with pilot data to develop a scientifically rigorous randomized clinical trial of a palliative care intervention/care model that is currently underway. 39, 40
Our experience allowed us to identify methodological issues and strategies to address them. For example, we realized the need to prospectively engage and maintain longitudinal relationships with family caregivers of persons with newly diagnosed, advanced stage cancers who we hoped to survey after the patients’ death.
In summary, proxy perspectives obtained using the ADI informed our understanding of the quality of care and quality of life of persons with advanced cancer in our region. Some domains of care, such as advance care planning and hospice length of service, reflected higher rates over national averages. However, especially in the realm of pain and emotional symptoms during the last week of life we identified a great need to improve both our measurement of symptoms and the clinical care that is provided at the very end of life. Development of reliable and valid measures of the end-of-life experience of patients using proxy’s estimates of symptoms and quality of care is an important target of research. Ongoing investigation of the reliability and validity of family proxy reports can help us to develop scientifically rigorous measures for use in evaluation of interventions designed to improve the quality of end-of-life care for patients and their family members.