Concordance of End-of-Life Care With End-of-Life Wishes in an Integrated Health Care System

Key Points Question How well are the end-of-life wishes of decedents 65 years or older met? Findings In this quality improvement study of next of kin of 715 decedents who died at 65 years or older, respondents reported that 80% to 90% of decedents discussed preferences with next of kin, filled out an advance directive, or gave real thought to the care they desired. Respondents also reported that 85% to 95% of decedents gave positive responses to receiving the care they wanted and 82.5% of decedents believed they received the right amount of care. Meaning This study suggests that most older decedents are receiving care concordant with their wishes.


Introduction
The research on end-of-life care in the US is extensive, deep, and long-standing. Reflecting the interest in and concern with this area, the Institute of Medicine (IOM) has produced 2 substantial reports on the situation in the US and recommendations for improvement. 1,2 At the heart of those reports is the recognition that there is still a long road ahead to the achievement of patientcentered care.
There is widespread consensus on 3 challenges in end-of-life care in the US. The first has to do with the lack of discussion and documentation of patients' preferences regarding end-of-life care. [3][4][5][6][7][8][9] Fears about death and the failure to discuss or document end-of-life preferences are common in the US. [10][11][12] The lack of knowledge of patient preferences obviously makes it difficult to match appropriate treatments with patient priorities.
The second, related concern is that patients' wishes are often not met. 6,13,14 Patients end up in situations in which they receive discordant care. 15, 16 Physicians provide care that is neither wanted nor needed because, lacking information on preferences, they default to providing all possible care.
Patients conversely may want certain care but not receive it because of poor communication with their physician. 17 Discordant care has many dimensions, including the location of death, the treatments received, the pain endured, and the quality of life experienced. [18][19][20][21] A third shortcoming to serious illness care is that patients receive far more care than desired and that health care costs are, as a result, unnecessarily high. [22][23][24][25] The large portion of Medicare costs spent during the last year of life (approximately 25%) coupled with the variability of these costs and treatments across geographic areas has convinced many that end-of-life spending is an area of waste and large potential savings. [26][27][28][29] A survey was conducted as a baseline to understand how well our medical system was delivering end-of-life care. We were interested in measuring our performance on each of these 3 challenges with the longer-term goal of identifying where and how we might improve our end-of-life care. We gathered information from next of kin about their loved ones' experiences in the last year of life. In alignment with the conceptual model of achieving goal-concordant care, 30 we wished to know the degree to which loved ones had communicated their end-of-life preferences, how well those wishes had been met, and whether loved ones received more care than desired. The first objective was to understand our gaps in these areas. We also explored, as secondary objectives, the association of costs in the last year of life with concordance and the association of different end-oflife values (wanting all end-of-life health care measures used vs sometimes allowing patients to die) with meeting end-of-life wishes. We hypothesized that both those with higher costs and those who wanted all end-of-life health care measures used would have lower concordance, reflecting the challenges noted above. However, our exploratory findings did not neatly match these challenges and hypotheses, offering a different perspective on the current situation and the path toward improvement.

Methods
This survey questionnaire and protocol were reviewed by the Kaiser Permanente Southern California (KPSC) Institutional Review Board, which determined that this was not human participant research, did not require consent, and was a quality improvement project. All data were deidentified. Quality improvement is designed to provide immediate health delivery improvements in a particular setting. 31,32 This study followed the American Association for Public Opinion Research (AAPOR) reporting guideline. offices scattered throughout Southern California. The member population of KPSC is demographically diverse and broadly representative of groups living in Southern California. 33

Participants
This survey was conducted with the next of kin of deceased members in KPSC who were 65 years or older, had 2 or more visits in the last year of their life, and died between April 1 and May 31, 2017 (alldecedent sample). The next of kin was the primary contact in the decedent's health record. The survey was fielded between December 19, 2017, and February 8, 2018.
A second, high-cost sample of deceased members was also drawn. These were deceased members, 65 years or older, with 2 or more visits in the last year of their life, who died between June 1, 2016, through May 31, 2017 (to obtain sufficient sample), and whose costs during the last year of life were in the top 10% of the costs of all members who died during this period.
A third sample, deemed lower-cost decedents, was created from the first sample described above as a comparison group to the high-cost sample (eAppendix 1 in the Supplement). These were decedents whose costs in the last year of life were not in the top 10% in costs.
All of the results are reported by next of kin on behalf of their loved ones. We sometimes refer to decedents' values and beliefs, but this is as perceived and reported by their next of kin.

Questionnaire Development
A 4-step process (eAppendix 2 in the Supplement) was used in developing the questionnaire: (1) existing end-of-life questionnaires were reviewed, and questions that focused on treatment concordance were adopted 5,12,34-42 ; (2) key questions were tested in focus groups with next of kin; (3) a draft questionnaire was reviewed by internal KPSC end-of-life experts; and (4) a pretest of the questionnaire with next of kin was conducted. The questionnaire is provided in eAppendix 3 in the Supplement and covers the 4 domains of end-of-life communications: preferences and values, treatments and care received, and concordance. 30 Item nonresponse for key measures was small (<2.0%).

Study Procedures
Two mailings of the questionnaire were sent to the address of the primary contact when available (approximately 35% of the time) or otherwise to the decedent's address. If no response was received, up to a maximum of 10 telephone calls were made to next of kin. However, 85% of the completions were by mail (involving no telephone calls) and 15% were completed by telephone. The Nonresponse weights were developed for all samples using logistic regression. 43 Included factors were sex, race/ethnicity, age, and costs during the last year of life. A comparison of nonrespondents and respondents can be found in eAppendix 6 in the Supplement.

Statistical Analysis
The characteristics of the respondents were described for the study samples. Categorical variables were described as numbers (percentages). A Pearson χ 2 test was used to examine differences between groups. We considered a 2-tailed P Յ .05 as statistically significant. Statistical analyses were performed with SAS software, version 9.4 (SAS Institute Inc) and SPSS software, version 20 Differences in the measures were examined for those who had higher costs (top 10%) vs lower costs (bottom 90%) in the last year of life as well as for those who reported views closer to the statement "In all circumstances, doctors and nurses should do everything possible to save the life of a patient" vs "Sometimes there are circumstances where a patient should be allowed to die." An ordinary least squares regression was run to identify significant independent variables and their association with the overall concordance variable (agreement with the statement "Kaiser Permanente gave care and treatment over the last year of my loved one's life that met my loved one's wishes."). The regression model was then used to ascertain the estimated change in this dependent variable if the performance on each independent variable was fixed (eg, association if all decedents had had end-of-life discussions). Because the model is linear, this is equivalent to an estimated margin calculation for the maximum improvement. 44 Details about the regression and the estimated change are in eAppendix 7 in the Supplement.

Results
Surveys were completed in the all-decedent sample (mean [ Table 1 gives the characteristics of the 3 samples in this study. In the all-decedent sample, the

General Measures of Concordance
By and large, decedents received care that met their wishes on several questions focused on this issue ( Table 3). For example, among the all-decedents sample, 601 (88.9%) agreed that their loved one's care and treatment wishes were met in the last year of life. Similarly, 39 (5.9%) reported receiving an unwanted treatment, and 84 (13.5%) reported not receiving a desired treatment. We also asked about the amount of care received in the last year of life, and 509 (82.5%) reported that they were given the right amount of care. We compared concordance between those who wanted every lifesaving treatment vs allowing patients to die and found no differences on 5 of the 6 measures. On the other hand, the higher-cost group (top 10%) was less satisfied than the lower-cost group with their care and treatment on all but one of the measures.

Types and Levels of Discordant Care
Although the results on general measures of concordance are high, there are specific areas where concordance remains a challenge. Three such areas are presented in Table 4. First, only 338 (57.1%) of those who said they would like to die at home did so. Second, few decedents received cardiopulmonary resuscitation, mechanical respiration, or artificial feeding who did not want it.
However, among only those who received these treatments, the rates of discordance were substantial. For example, 28 (37.9%) of those who received cardiopulmonary resuscitation reported that they did not want it, with similar findings for mechanical respiration (44 [42.7%]) and artificial feeding (20 [39.1%]). Finally, we asked how often decedents' pain made them uncomfortable. A total of 182 (28.4%) reported they were always in pain, and 147 (22.8%) reported that they were usually in pain. The levels of pain reported by those in hospice and/or palliative care were not much different (eAppendix 8 in the Supplement).

Key Factors and Their Association With Meeting Wishes
Several factors appear promising for improving the percentage of respondents strongly agreeing that their wishes were met. The   discussions about end-of-life preferences with a physician or other medical staff member, the percentage strongly agreeing their wishes were met would increase by 9.8 percentage points.

Discussion
This quality improvement study found positive results in the 3 areas often described as challenges.
First, the study found that approximately 80% to 90% of decedents discussed preferences with next of kin, filled out an advance directive, or gave real thought to the care they desired. Moreover, 65.0% had discussed their treatment preferences with physicians or other medical staff members.
Second, the study found that approximately 85% to 95% of decedents gave positive scores on receiving the care they wanted. Third, most decedents thought they got the right amount of care (82.5%).
Beyond these core findings, 2 additional results are striking. One is that high rates of meeting  Level of thought loved one had given to end-of-life treatments wanted or not wanted studies 5,46 do not focus on those who have died. Given that the goal of end-of-life planning is to optimize care at the end of life, studying patients who do not die is a biased approach. It is intuitive that the various elements of advance care planning will have more relevance and be more readily adopted by older individuals who ultimately died.
The 2014 IOM study 2 provides backing for this. The IOM report examines 3 surveys and notes that the percentage of adults reporting to have an advance directive varies from 23% (in a study of adults Ն18 years of age) to 47% (in a study of adults Ն40 years of age) to 54% (in a study of adults Ն60 of age). None of these finding reach the 84.1% of decedents (Ն65 of age) in the current study with an advance directive, but the gap lessens considerably. Moreover, the current data also support this same pattern, with advance directive completions increasing from 75.7% ( This focused study of those 65 years and older who died led to at least 2 novel findings beyond those already mentioned. One is why the high cost group was less satisfied. The study found that this high-cost group died at a substantially younger age than the lower-cost group, with half of the