Steven Z. Pantilat, MD

Palliative care (PC) focuses on relieving distressing symptoms such as pain, dyspnea, fatigue, and depression; providing psychological, social, emotional, and spiritual support; and helping patients choose treatments consistent with their values.[1] Palliative care consultation services (PCSs) increase patient and family satisfaction,[2, 3] improve quality of life,[4] reduce resource utilization,[5] and decrease hospital expenditure.[2, 6] Hospitals that fund a PCS typically realize a sizable return on investment and good value, as these services provide better care at lower cost.[7] These benefits provide a strong rationale for all hospitals to establish a PCS. However, only 53% of acute care hospitals in California offer PC services, and only 37% have a hospital‐based PCS.[7] To increase access for patients with serious illness, it is necessary to understand the barriers that hinder the development of PCS. In this study, we asked leaders from hospitals without a PCS to describe these barriers and identify strategies that could overcome them and promote PCSs.

METHODS

In 2011, we surveyed all acute care hospitals in California to assess the prevalence of PCSs in the state. We defined a PCS as an interdisciplinary team that sees patients, identifies needs, makes treatment recommendations, facilitates patient and/or family decision making, and/or directly provides palliative care for patients with life‐threatening illness and their families. Hospitals that did not have a PCS were asked questions regarding plans to establish one (Is there an effort underway to establish a palliative care program in your hospital?), perceived barriers to starting one (What are 3 significant barriers or circumstances that have prevented your hospital from creating a palliative care program?), and ideas for overcoming barriers (What resources, training, policy changes would be most helpful in overcoming those barriers?). Questions that allowed for open‐ended responses were analyzed using a thematic approach.[8] Themes were initially reviewed by 1 researcher (C.J.B.), then refined and confirmed at each stage using an iterative process with other research team members (D.L.O., S.Z.P.) to reduce potential biases. Questions assessing hospital characteristics and status toward establishing a PCS provided a list of possible answers. Frequencies to these responses are reported accordingly.

RESULTS

Surveys were distributed to 376 acute care hospitals in California, of which 360 responded to the survey, resulting in a 96% response rate. Of the 360 hospitals surveyed, 46% (n=166) reported not offering any PCS. Out of the 166 that did not have PCS, 7 stated they had a PCS at some point in the last 5 years, but the program was discontinued. Hospitals without a PCS were largely for profit (75%, n=125), small with <150 beds (72%, n=120), and not affiliated with a system (63%, n=105). Overall, 34% (43/128) of hospitals reported that they had efforts underway to establish one, with 21% (9/43) expecting to start seeing patients within a year. Seventy‐two hospitals (56%, 72/128) reported that providers from local hospices aided them in providing their patients with PC, and that this approach met the needs of their patients. A total of 93 hospitals identified multiple barriers (n=186) to establishing a PCS, of which 162 responses could be categorized into 5 meaningful themes. Regarding strategies to overcome these barriers, 65 hospitals provided 72 responses that could be categorized into 5 meaningful themes (Table 1).

DISCUSSION

Despite citing obstacles to providing PCSs, one‐third of hospitals surveyed report that they are planning to establish a program. As an alternative, many hospitals without a PCS reported that they provide their patients with PC through partnerships with local hospice services. This approach may provide some hospitals with a practical alternative to having a PCS, especially in smaller institutions where budgets and the need for PC are proportionally small. Future surveys should account for this approach to providing PCS to patients. Sharing the strong evidence of return on investment from PCS[6, 7] with hospital leaders could help overcome the perceived barrier of cost and garner financial support. Training programs and technical assistance provided by the Palliative Care Leadership Center initiative and the Center to Advance Palliative Care have a proven track record in helping hospitals establish a PCS through mentored training,[9] and the End‐of‐Life Nursing Education Consortium has demonstrated effectiveness with nursing education.[10] These programs could provide the resources that many hospitals seek. Educating hospital leaders and clinicians about the evidence for PCSs improving care for patients with serious illness may further help to engender support for PCSs. One barrier that may be more difficult to overcome is the lack of trained PC clinicians. Efforts to educate and train generalist clinicians in primary PC may mitigate this shortfall.[1] Increasing the number of trained primary PC clinicians may also reduce fragmentation in patient care and reduce burden on specialist PC clinicians.[11] Specialty PC clinicians can also lend their expertise to hospitals seeking to start a PCS to achieve the goal of universal access to PCS.

Disclosures

The California HealthCare Foundation provided funding to support the administration of the survey and analysis of findings, as well as limited dissemination of results though the foundation's communication venues. The authors report no conflicts of interest.

Palliative care (PC) focuses on relieving distressing symptoms such as pain, dyspnea, fatigue, and depression; providing psychological, social, emotional, and spiritual support; and helping patients choose treatments consistent with their values.[1] Palliative care consultation services (PCSs) increase patient and family satisfaction,[2, 3] improve quality of life,[4] reduce resource utilization,[5] and decrease hospital expenditure.[2, 6] Hospitals that fund a PCS typically realize a sizable return on investment and good value, as these services provide better care at lower cost.[7] These benefits provide a strong rationale for all hospitals to establish a PCS. However, only 53% of acute care hospitals in California offer PC services, and only 37% have a hospital‐based PCS.[7] To increase access for patients with serious illness, it is necessary to understand the barriers that hinder the development of PCS. In this study, we asked leaders from hospitals without a PCS to describe these barriers and identify strategies that could overcome them and promote PCSs.

METHODS

In 2011, we surveyed all acute care hospitals in California to assess the prevalence of PCSs in the state. We defined a PCS as an interdisciplinary team that sees patients, identifies needs, makes treatment recommendations, facilitates patient and/or family decision making, and/or directly provides palliative care for patients with life‐threatening illness and their families. Hospitals that did not have a PCS were asked questions regarding plans to establish one (Is there an effort underway to establish a palliative care program in your hospital?), perceived barriers to starting one (What are 3 significant barriers or circumstances that have prevented your hospital from creating a palliative care program?), and ideas for overcoming barriers (What resources, training, policy changes would be most helpful in overcoming those barriers?). Questions that allowed for open‐ended responses were analyzed using a thematic approach.[8] Themes were initially reviewed by 1 researcher (C.J.B.), then refined and confirmed at each stage using an iterative process with other research team members (D.L.O., S.Z.P.) to reduce potential biases. Questions assessing hospital characteristics and status toward establishing a PCS provided a list of possible answers. Frequencies to these responses are reported accordingly.

RESULTS

Surveys were distributed to 376 acute care hospitals in California, of which 360 responded to the survey, resulting in a 96% response rate. Of the 360 hospitals surveyed, 46% (n=166) reported not offering any PCS. Out of the 166 that did not have PCS, 7 stated they had a PCS at some point in the last 5 years, but the program was discontinued. Hospitals without a PCS were largely for profit (75%, n=125), small with <150 beds (72%, n=120), and not affiliated with a system (63%, n=105). Overall, 34% (43/128) of hospitals reported that they had efforts underway to establish one, with 21% (9/43) expecting to start seeing patients within a year. Seventy‐two hospitals (56%, 72/128) reported that providers from local hospices aided them in providing their patients with PC, and that this approach met the needs of their patients. A total of 93 hospitals identified multiple barriers (n=186) to establishing a PCS, of which 162 responses could be categorized into 5 meaningful themes. Regarding strategies to overcome these barriers, 65 hospitals provided 72 responses that could be categorized into 5 meaningful themes (Table 1).

DISCUSSION

Despite citing obstacles to providing PCSs, one‐third of hospitals surveyed report that they are planning to establish a program. As an alternative, many hospitals without a PCS reported that they provide their patients with PC through partnerships with local hospice services. This approach may provide some hospitals with a practical alternative to having a PCS, especially in smaller institutions where budgets and the need for PC are proportionally small. Future surveys should account for this approach to providing PCS to patients. Sharing the strong evidence of return on investment from PCS[6, 7] with hospital leaders could help overcome the perceived barrier of cost and garner financial support. Training programs and technical assistance provided by the Palliative Care Leadership Center initiative and the Center to Advance Palliative Care have a proven track record in helping hospitals establish a PCS through mentored training,[9] and the End‐of‐Life Nursing Education Consortium has demonstrated effectiveness with nursing education.[10] These programs could provide the resources that many hospitals seek. Educating hospital leaders and clinicians about the evidence for PCSs improving care for patients with serious illness may further help to engender support for PCSs. One barrier that may be more difficult to overcome is the lack of trained PC clinicians. Efforts to educate and train generalist clinicians in primary PC may mitigate this shortfall.[1] Increasing the number of trained primary PC clinicians may also reduce fragmentation in patient care and reduce burden on specialist PC clinicians.[11] Specialty PC clinicians can also lend their expertise to hospitals seeking to start a PCS to achieve the goal of universal access to PCS.

Disclosures

The California HealthCare Foundation provided funding to support the administration of the survey and analysis of findings, as well as limited dissemination of results though the foundation's communication venues. The authors report no conflicts of interest.

Palliative care (PC) focuses on relieving distressing symptoms such as pain, dyspnea, fatigue, and depression; providing psychological, social, emotional, and spiritual support; and helping patients choose treatments consistent with their values.[1] Palliative care consultation services (PCSs) increase patient and family satisfaction,[2, 3] improve quality of life,[4] reduce resource utilization,[5] and decrease hospital expenditure.[2, 6] Hospitals that fund a PCS typically realize a sizable return on investment and good value, as these services provide better care at lower cost.[7] These benefits provide a strong rationale for all hospitals to establish a PCS. However, only 53% of acute care hospitals in California offer PC services, and only 37% have a hospital‐based PCS.[7] To increase access for patients with serious illness, it is necessary to understand the barriers that hinder the development of PCS. In this study, we asked leaders from hospitals without a PCS to describe these barriers and identify strategies that could overcome them and promote PCSs.

METHODS

In 2011, we surveyed all acute care hospitals in California to assess the prevalence of PCSs in the state. We defined a PCS as an interdisciplinary team that sees patients, identifies needs, makes treatment recommendations, facilitates patient and/or family decision making, and/or directly provides palliative care for patients with life‐threatening illness and their families. Hospitals that did not have a PCS were asked questions regarding plans to establish one (Is there an effort underway to establish a palliative care program in your hospital?), perceived barriers to starting one (What are 3 significant barriers or circumstances that have prevented your hospital from creating a palliative care program?), and ideas for overcoming barriers (What resources, training, policy changes would be most helpful in overcoming those barriers?). Questions that allowed for open‐ended responses were analyzed using a thematic approach.[8] Themes were initially reviewed by 1 researcher (C.J.B.), then refined and confirmed at each stage using an iterative process with other research team members (D.L.O., S.Z.P.) to reduce potential biases. Questions assessing hospital characteristics and status toward establishing a PCS provided a list of possible answers. Frequencies to these responses are reported accordingly.

RESULTS

Surveys were distributed to 376 acute care hospitals in California, of which 360 responded to the survey, resulting in a 96% response rate. Of the 360 hospitals surveyed, 46% (n=166) reported not offering any PCS. Out of the 166 that did not have PCS, 7 stated they had a PCS at some point in the last 5 years, but the program was discontinued. Hospitals without a PCS were largely for profit (75%, n=125), small with <150 beds (72%, n=120), and not affiliated with a system (63%, n=105). Overall, 34% (43/128) of hospitals reported that they had efforts underway to establish one, with 21% (9/43) expecting to start seeing patients within a year. Seventy‐two hospitals (56%, 72/128) reported that providers from local hospices aided them in providing their patients with PC, and that this approach met the needs of their patients. A total of 93 hospitals identified multiple barriers (n=186) to establishing a PCS, of which 162 responses could be categorized into 5 meaningful themes. Regarding strategies to overcome these barriers, 65 hospitals provided 72 responses that could be categorized into 5 meaningful themes (Table 1).

DISCUSSION

Despite citing obstacles to providing PCSs, one‐third of hospitals surveyed report that they are planning to establish a program. As an alternative, many hospitals without a PCS reported that they provide their patients with PC through partnerships with local hospice services. This approach may provide some hospitals with a practical alternative to having a PCS, especially in smaller institutions where budgets and the need for PC are proportionally small. Future surveys should account for this approach to providing PCS to patients. Sharing the strong evidence of return on investment from PCS[6, 7] with hospital leaders could help overcome the perceived barrier of cost and garner financial support. Training programs and technical assistance provided by the Palliative Care Leadership Center initiative and the Center to Advance Palliative Care have a proven track record in helping hospitals establish a PCS through mentored training,[9] and the End‐of‐Life Nursing Education Consortium has demonstrated effectiveness with nursing education.[10] These programs could provide the resources that many hospitals seek. Educating hospital leaders and clinicians about the evidence for PCSs improving care for patients with serious illness may further help to engender support for PCSs. One barrier that may be more difficult to overcome is the lack of trained PC clinicians. Efforts to educate and train generalist clinicians in primary PC may mitigate this shortfall.[1] Increasing the number of trained primary PC clinicians may also reduce fragmentation in patient care and reduce burden on specialist PC clinicians.[11] Specialty PC clinicians can also lend their expertise to hospitals seeking to start a PCS to achieve the goal of universal access to PCS.

Disclosures

The California HealthCare Foundation provided funding to support the administration of the survey and analysis of findings, as well as limited dissemination of results though the foundation's communication venues. The authors report no conflicts of interest.

The frequency and severity of symptoms among older hospitalized patients with chronic illnesses can have a profound negative impact on their quality of life.1, 2 Nonetheless, research examining the prevalence and management of symptoms has focused predominantly on cancer patients.3 Few studies have included patients with other serious conditions such as heart failure (HF) and chronic obstructive pulmonary disease (COPD),3, 4 which are very common and are major causes of morbidity and mortality in the United States.5 One longitudinal assessment of symptom severity among a group of community‐based older adults diagnosed with COPD and HF reported high rates of moderate‐to‐severe pain, dyspnea, and anxiety at baseline and follow‐up, as long as 22 months later.6 Persistent symptoms over time can have an adverse effect on an individual's physical and emotional well‐being, and highlight opportunities to improve care.3, 7 Understanding patterns of symptom change over time is a key first step in developing systems to improve quality of care for people with chronic illness.

Among hospitalized patients, pain, dyspnea, anxiety, and depression cause the greatest symptom burden, accounting for 67% of all symptoms classified as moderate to severe.8 While assessment and management of symptoms may be the reason for admission to the hospital and the focus of inpatient care, this focus may not persist after discharge, leaving patients with significant symptoms that can diminish quality of life and contribute to readmission.9 We studied a cohort of older inpatients with serious illness over time in order to determine the prevalence, severity, burden, and predictors of symptoms during the course of hospitalization and at 2 weeks after discharge.

METHODS

RESULTS

Frequency and Severity of Symptoms

On average, the postdischarge follow‐up assessment was undertaken 24 days (median = 21.0; SD: 17.9; range: 7140 days) after the baseline assessment and 20 days after discharge (median = 15; SD: 17.0; range: 4139). At baseline, a large proportion of participants reported symptoms at a moderate‐to‐severe level for pain (54%, n = 81), dyspnea (53%, n = 79), and anxiety (63%, n = 94). The majority of patients (64%, n = 96) reported having 2 or more symptoms at a moderate‐to‐severe level and one quarter (27%, n = 41) had 3 symptoms at a moderate‐to‐severe level. While the frequency of moderate‐to‐severe symptoms decreased at the 24‐hour hospital assessment (pain = 42%, dyspnea = 45%, anxiety = 55%) and again at 2‐week follow‐up (pain = 28%, dyspnea = 27%, anxiety = 25%), a substantial symptom burden persisted with 30% (n = 36) of patients having moderate‐to‐severe levels at 2‐week follow‐up. Overall there were no differences between primary diagnosis and the frequency of symptoms at baseline or 24‐hour hospital assessment (Figure 1). However at follow‐up, those diagnosed with COPD were more likely to report moderate/severe pain (54%; ² = 22.0; P < 0.001), dyspnea (45%; ² = 9.3; P = 0.05), and overall symptom burden (55%; ² = 25.9; P < 0.001) than those with cancer (pain = 22%, dyspnea = 16%, symptom burden = 16%) or HF (pain = 25%, dyspnea = 24%, symptom burden = 28%).

Figure 1

As symptom burden was our composite score for pain, dyspnea, and anxiety, we were interested in identifying variables in addition to primary diagnosis that might be associated with symptom burden at follow‐up. Bivariate analysis revealed that there was no significant association between symptom burden and age (² = 1.5; P = 0.5), gender (² = 1.3; P = 0.3), length of stay (² = 0.4; P = 0.8), and (IADL) level of independence (² = 0.3; P = 0.6). However, those with probable depression were more likely (² = 11.9; P = 0.001) to have a moderate/severe symptom burden (62%, n = 13), compared to those with no depression (24%, n = 23). After adjusting for severity of symptom burden at baseline, multivariate logistic regression revealed that primary diagnosis (P = 0.01) and probable depression (OR = 4.9; 95% CI = 1.6, 14.9; P = 0.005) were associated with symptom severity. Patients with COPD had greater odds (OR = 7.0; 95% CI = 1.9, 26.2; P = 0.002) of moderate/severe symptom burden than those with cancer, while those with HF did not (OR = 2.3; 95% CI = 0.7, 7.7; P = 0.16). There was significant interaction between primary diagnosis and depression (P = 0.2).

Primary Diagnosis, Symptom Burden, and Survival Time

A total of 75% of patients were identified by the National Death Index to have died between hospital discharge and December 2007, of which 47% had died within 12 months after discharge. KaplanMeier survival curves (Figure 2) revealed a significant difference (MantelCox: ² = 19.3; df = 1; P = 0.0001) in survival time, with patients diagnosed with COPD (median = 19.0 months; 95% CI = 6.5, 31.5) and HF (median = 20.0 months; 95% CI = 12.5, 27.5) having a longer survival than those with cancer (median = 8.0 months; 95% CI = 4.1, 11.9).

Figure 2

We also examined the relationship between symptom burden and survival time. KaplanMeier survival curves revealed no significant difference (MantelCox: ² = 0.2; P = 0.6) in the survival time of patients classified with a symptom burden of none/moderate (median = 15.0 months; 95% CI = 8.8, 21.2) or moderate/severe (median = 14.0 months; 95% CI = 2.6, 25.4).

DISCUSSION

In our sample of older inpatients diagnosed with cancer, HF, and COPD, a large proportion reported moderate‐to‐severe levels of pain, dyspnea, and anxiety at baseline and follow‐up. When combined, these levels represent a considerable symptom burden, with over three‐quarters of participants reporting 2 to 3 symptoms at a moderate/severe level at baseline. While symptom scores decreased at 24‐hours and 2‐week follow‐up, symptom burden remained high, with almost half of the participants reporting 23 symptoms at a moderate‐to‐severe level at 24‐hour assessment and a large minority reporting moderate‐to‐severe symptoms at follow‐up. A higher percentage of patients with COPD reported moderate‐to‐severe pain, dyspnea, and overall symptom burden at follow‐up than participants with cancer or HF who reported a similar symptom burden. We also found that patients with probable depression were more likely to have a significant symptom burden at follow‐up. These findings highlight the need to routinely assess and treat symptoms over time, including depression, and especially in patients with COPD. While we found that hospital care was seemingly effective in improving symptoms, they persist at distressing levels in many patients.

Few studies have assessed the severity of symptoms over time. One study that did, examined symptom severity among community‐based elders diagnosed with HF and COPD.6 At baseline, these participants had a lower prevalence of moderate‐to‐severe symptoms than the hospitalized patients enrolled in our study, a finding that would be anticipated, as they may not have been as ill. However, symptom severity persisted in the community‐based subjects and, in some cases, worsened over the 22‐month assessment period for pain (HF = 20% vs 42%; COPD = 27% vs 20%), dyspnea (HF = 19% vs 29%; COPD = 66% vs 76%), and anxiety (HF = 2% vs 12%; COPD = 32% vs 23%).6 In contrast, while our subjects with a primary diagnosis of HF and COPD had a higher prevalence of moderate‐to‐severe symptoms at baseline, they did experience an improvement in the severity of pain, dyspnea, and anxiety at the 2‐week follow‐up assessment. However, despite a decrease in the prevalence of moderate‐to‐severe symptoms from baseline to follow‐up, a high symptom burden persisted for many patients, particularly for those diagnosed with COPD and those with probable depression at baseline. The severity of a patient's symptoms can have a profound negative effect on health status and quality of life.14 Findings from these studies suggest that symptoms are currently not being adequately managed, and highlight an urgent need to develop coordinated strategies and systems that focus on improving the management of symptoms, including depression, over time.6

We also found that subjects recruited for this study had advanced disease, evidenced by the fact that nearly half died within 12 months. We did not use specific prognostic indices or severity of illness criteria for recruiting subjects and simply approached patients admitted with one of the target diagnoses. Our study suggests that targeting these patients for routine symptom assessment and management, including for palliative care, would be a reasonable approach given the high symptom burden and relatively high mortality at 1 year.

Interpretation of these findings should be mitigated by the following limitations. Because of our setting, our findings may not be generalizable to all patients with cancer, HF, and COPD. However, our subjects were admitted to general medical and cardiology services, and had common conditions, and therefore are likely similar to those presenting to other hospitals. We relied on self‐report measures to assess severity of symptoms. Patient self‐report, while potentially subject to imprecision due to poor recall and social demand biases, is considered the gold standard for symptom assessment.15 Finally, 2‐week follow‐up is relatively short, and it is possible that symptoms may have improved had we assessed them over a longer period. The longitudinal study of elders in the community that followed subjects over 22 months found that, for many patients, symptoms worsened over time and nearly half of our subjects died at 12 months, suggesting that longer follow‐up would have been unlikely to show improvement in symptoms.6

A significant minority of participants reported a substantial, persistent symptom burden, yet all symptoms assessed in our study are potentially modifiable. Recognizing and treating symptoms can be achieved through the use of targeted interventions.6 Because symptoms can occur in clusters, successful treatment of 1 symptom may also help to improve other symptoms.1 The large number of participants reporting moderate‐to‐severe levels of symptom burden at 2 weeks after discharge highlights an unmet need for improved symptom control in the outpatient setting. Unfortunately, while evidence exists for managing pain in patients with cancer, such evidence‐based practices are lacking for the management of pain and other symptoms in patients with HF and COPD. Some symptoms may require specific, disease‐oriented management. However, many symptoms may be due to common comorbidities, such as pain from degenerative joint disease, that may likely respond to proven treatments.16

Our study confirmed the significant burden of symptoms experienced by patients with serious illness and demonstrated that patients with COPD report as much symptom burden as patients with cancer and HF, if not more. While symptom severity improved over the course of the hospitalization and follow‐up, a large percentage of patients reported significant symptom burden at follow‐up. Depression was also common in these patients. Because these symptoms diminish quality of life, routine assessment and management of these symptoms is critical for improving the quality of care provided to these patients. Additional research on the best approaches to manage symptoms, including medications, interventions, and structures of care, could further improve care.

The frequency and severity of symptoms among older hospitalized patients with chronic illnesses can have a profound negative impact on their quality of life.1, 2 Nonetheless, research examining the prevalence and management of symptoms has focused predominantly on cancer patients.3 Few studies have included patients with other serious conditions such as heart failure (HF) and chronic obstructive pulmonary disease (COPD),3, 4 which are very common and are major causes of morbidity and mortality in the United States.5 One longitudinal assessment of symptom severity among a group of community‐based older adults diagnosed with COPD and HF reported high rates of moderate‐to‐severe pain, dyspnea, and anxiety at baseline and follow‐up, as long as 22 months later.6 Persistent symptoms over time can have an adverse effect on an individual's physical and emotional well‐being, and highlight opportunities to improve care.3, 7 Understanding patterns of symptom change over time is a key first step in developing systems to improve quality of care for people with chronic illness.

Among hospitalized patients, pain, dyspnea, anxiety, and depression cause the greatest symptom burden, accounting for 67% of all symptoms classified as moderate to severe.8 While assessment and management of symptoms may be the reason for admission to the hospital and the focus of inpatient care, this focus may not persist after discharge, leaving patients with significant symptoms that can diminish quality of life and contribute to readmission.9 We studied a cohort of older inpatients with serious illness over time in order to determine the prevalence, severity, burden, and predictors of symptoms during the course of hospitalization and at 2 weeks after discharge.

METHODS

RESULTS

Frequency and Severity of Symptoms

On average, the postdischarge follow‐up assessment was undertaken 24 days (median = 21.0; SD: 17.9; range: 7140 days) after the baseline assessment and 20 days after discharge (median = 15; SD: 17.0; range: 4139). At baseline, a large proportion of participants reported symptoms at a moderate‐to‐severe level for pain (54%, n = 81), dyspnea (53%, n = 79), and anxiety (63%, n = 94). The majority of patients (64%, n = 96) reported having 2 or more symptoms at a moderate‐to‐severe level and one quarter (27%, n = 41) had 3 symptoms at a moderate‐to‐severe level. While the frequency of moderate‐to‐severe symptoms decreased at the 24‐hour hospital assessment (pain = 42%, dyspnea = 45%, anxiety = 55%) and again at 2‐week follow‐up (pain = 28%, dyspnea = 27%, anxiety = 25%), a substantial symptom burden persisted with 30% (n = 36) of patients having moderate‐to‐severe levels at 2‐week follow‐up. Overall there were no differences between primary diagnosis and the frequency of symptoms at baseline or 24‐hour hospital assessment (Figure 1). However at follow‐up, those diagnosed with COPD were more likely to report moderate/severe pain (54%; ² = 22.0; P < 0.001), dyspnea (45%; ² = 9.3; P = 0.05), and overall symptom burden (55%; ² = 25.9; P < 0.001) than those with cancer (pain = 22%, dyspnea = 16%, symptom burden = 16%) or HF (pain = 25%, dyspnea = 24%, symptom burden = 28%).

Figure 1

As symptom burden was our composite score for pain, dyspnea, and anxiety, we were interested in identifying variables in addition to primary diagnosis that might be associated with symptom burden at follow‐up. Bivariate analysis revealed that there was no significant association between symptom burden and age (² = 1.5; P = 0.5), gender (² = 1.3; P = 0.3), length of stay (² = 0.4; P = 0.8), and (IADL) level of independence (² = 0.3; P = 0.6). However, those with probable depression were more likely (² = 11.9; P = 0.001) to have a moderate/severe symptom burden (62%, n = 13), compared to those with no depression (24%, n = 23). After adjusting for severity of symptom burden at baseline, multivariate logistic regression revealed that primary diagnosis (P = 0.01) and probable depression (OR = 4.9; 95% CI = 1.6, 14.9; P = 0.005) were associated with symptom severity. Patients with COPD had greater odds (OR = 7.0; 95% CI = 1.9, 26.2; P = 0.002) of moderate/severe symptom burden than those with cancer, while those with HF did not (OR = 2.3; 95% CI = 0.7, 7.7; P = 0.16). There was significant interaction between primary diagnosis and depression (P = 0.2).

Primary Diagnosis, Symptom Burden, and Survival Time

A total of 75% of patients were identified by the National Death Index to have died between hospital discharge and December 2007, of which 47% had died within 12 months after discharge. KaplanMeier survival curves (Figure 2) revealed a significant difference (MantelCox: ² = 19.3; df = 1; P = 0.0001) in survival time, with patients diagnosed with COPD (median = 19.0 months; 95% CI = 6.5, 31.5) and HF (median = 20.0 months; 95% CI = 12.5, 27.5) having a longer survival than those with cancer (median = 8.0 months; 95% CI = 4.1, 11.9).

Figure 2

We also examined the relationship between symptom burden and survival time. KaplanMeier survival curves revealed no significant difference (MantelCox: ² = 0.2; P = 0.6) in the survival time of patients classified with a symptom burden of none/moderate (median = 15.0 months; 95% CI = 8.8, 21.2) or moderate/severe (median = 14.0 months; 95% CI = 2.6, 25.4).

DISCUSSION

In our sample of older inpatients diagnosed with cancer, HF, and COPD, a large proportion reported moderate‐to‐severe levels of pain, dyspnea, and anxiety at baseline and follow‐up. When combined, these levels represent a considerable symptom burden, with over three‐quarters of participants reporting 2 to 3 symptoms at a moderate/severe level at baseline. While symptom scores decreased at 24‐hours and 2‐week follow‐up, symptom burden remained high, with almost half of the participants reporting 23 symptoms at a moderate‐to‐severe level at 24‐hour assessment and a large minority reporting moderate‐to‐severe symptoms at follow‐up. A higher percentage of patients with COPD reported moderate‐to‐severe pain, dyspnea, and overall symptom burden at follow‐up than participants with cancer or HF who reported a similar symptom burden. We also found that patients with probable depression were more likely to have a significant symptom burden at follow‐up. These findings highlight the need to routinely assess and treat symptoms over time, including depression, and especially in patients with COPD. While we found that hospital care was seemingly effective in improving symptoms, they persist at distressing levels in many patients.

Few studies have assessed the severity of symptoms over time. One study that did, examined symptom severity among community‐based elders diagnosed with HF and COPD.6 At baseline, these participants had a lower prevalence of moderate‐to‐severe symptoms than the hospitalized patients enrolled in our study, a finding that would be anticipated, as they may not have been as ill. However, symptom severity persisted in the community‐based subjects and, in some cases, worsened over the 22‐month assessment period for pain (HF = 20% vs 42%; COPD = 27% vs 20%), dyspnea (HF = 19% vs 29%; COPD = 66% vs 76%), and anxiety (HF = 2% vs 12%; COPD = 32% vs 23%).6 In contrast, while our subjects with a primary diagnosis of HF and COPD had a higher prevalence of moderate‐to‐severe symptoms at baseline, they did experience an improvement in the severity of pain, dyspnea, and anxiety at the 2‐week follow‐up assessment. However, despite a decrease in the prevalence of moderate‐to‐severe symptoms from baseline to follow‐up, a high symptom burden persisted for many patients, particularly for those diagnosed with COPD and those with probable depression at baseline. The severity of a patient's symptoms can have a profound negative effect on health status and quality of life.14 Findings from these studies suggest that symptoms are currently not being adequately managed, and highlight an urgent need to develop coordinated strategies and systems that focus on improving the management of symptoms, including depression, over time.6

We also found that subjects recruited for this study had advanced disease, evidenced by the fact that nearly half died within 12 months. We did not use specific prognostic indices or severity of illness criteria for recruiting subjects and simply approached patients admitted with one of the target diagnoses. Our study suggests that targeting these patients for routine symptom assessment and management, including for palliative care, would be a reasonable approach given the high symptom burden and relatively high mortality at 1 year.

Interpretation of these findings should be mitigated by the following limitations. Because of our setting, our findings may not be generalizable to all patients with cancer, HF, and COPD. However, our subjects were admitted to general medical and cardiology services, and had common conditions, and therefore are likely similar to those presenting to other hospitals. We relied on self‐report measures to assess severity of symptoms. Patient self‐report, while potentially subject to imprecision due to poor recall and social demand biases, is considered the gold standard for symptom assessment.15 Finally, 2‐week follow‐up is relatively short, and it is possible that symptoms may have improved had we assessed them over a longer period. The longitudinal study of elders in the community that followed subjects over 22 months found that, for many patients, symptoms worsened over time and nearly half of our subjects died at 12 months, suggesting that longer follow‐up would have been unlikely to show improvement in symptoms.6

A significant minority of participants reported a substantial, persistent symptom burden, yet all symptoms assessed in our study are potentially modifiable. Recognizing and treating symptoms can be achieved through the use of targeted interventions.6 Because symptoms can occur in clusters, successful treatment of 1 symptom may also help to improve other symptoms.1 The large number of participants reporting moderate‐to‐severe levels of symptom burden at 2 weeks after discharge highlights an unmet need for improved symptom control in the outpatient setting. Unfortunately, while evidence exists for managing pain in patients with cancer, such evidence‐based practices are lacking for the management of pain and other symptoms in patients with HF and COPD. Some symptoms may require specific, disease‐oriented management. However, many symptoms may be due to common comorbidities, such as pain from degenerative joint disease, that may likely respond to proven treatments.16

Our study confirmed the significant burden of symptoms experienced by patients with serious illness and demonstrated that patients with COPD report as much symptom burden as patients with cancer and HF, if not more. While symptom severity improved over the course of the hospitalization and follow‐up, a large percentage of patients reported significant symptom burden at follow‐up. Depression was also common in these patients. Because these symptoms diminish quality of life, routine assessment and management of these symptoms is critical for improving the quality of care provided to these patients. Additional research on the best approaches to manage symptoms, including medications, interventions, and structures of care, could further improve care.

The frequency and severity of symptoms among older hospitalized patients with chronic illnesses can have a profound negative impact on their quality of life.1, 2 Nonetheless, research examining the prevalence and management of symptoms has focused predominantly on cancer patients.3 Few studies have included patients with other serious conditions such as heart failure (HF) and chronic obstructive pulmonary disease (COPD),3, 4 which are very common and are major causes of morbidity and mortality in the United States.5 One longitudinal assessment of symptom severity among a group of community‐based older adults diagnosed with COPD and HF reported high rates of moderate‐to‐severe pain, dyspnea, and anxiety at baseline and follow‐up, as long as 22 months later.6 Persistent symptoms over time can have an adverse effect on an individual's physical and emotional well‐being, and highlight opportunities to improve care.3, 7 Understanding patterns of symptom change over time is a key first step in developing systems to improve quality of care for people with chronic illness.

Among hospitalized patients, pain, dyspnea, anxiety, and depression cause the greatest symptom burden, accounting for 67% of all symptoms classified as moderate to severe.8 While assessment and management of symptoms may be the reason for admission to the hospital and the focus of inpatient care, this focus may not persist after discharge, leaving patients with significant symptoms that can diminish quality of life and contribute to readmission.9 We studied a cohort of older inpatients with serious illness over time in order to determine the prevalence, severity, burden, and predictors of symptoms during the course of hospitalization and at 2 weeks after discharge.

METHODS

RESULTS

Frequency and Severity of Symptoms

On average, the postdischarge follow‐up assessment was undertaken 24 days (median = 21.0; SD: 17.9; range: 7140 days) after the baseline assessment and 20 days after discharge (median = 15; SD: 17.0; range: 4139). At baseline, a large proportion of participants reported symptoms at a moderate‐to‐severe level for pain (54%, n = 81), dyspnea (53%, n = 79), and anxiety (63%, n = 94). The majority of patients (64%, n = 96) reported having 2 or more symptoms at a moderate‐to‐severe level and one quarter (27%, n = 41) had 3 symptoms at a moderate‐to‐severe level. While the frequency of moderate‐to‐severe symptoms decreased at the 24‐hour hospital assessment (pain = 42%, dyspnea = 45%, anxiety = 55%) and again at 2‐week follow‐up (pain = 28%, dyspnea = 27%, anxiety = 25%), a substantial symptom burden persisted with 30% (n = 36) of patients having moderate‐to‐severe levels at 2‐week follow‐up. Overall there were no differences between primary diagnosis and the frequency of symptoms at baseline or 24‐hour hospital assessment (Figure 1). However at follow‐up, those diagnosed with COPD were more likely to report moderate/severe pain (54%; ² = 22.0; P < 0.001), dyspnea (45%; ² = 9.3; P = 0.05), and overall symptom burden (55%; ² = 25.9; P < 0.001) than those with cancer (pain = 22%, dyspnea = 16%, symptom burden = 16%) or HF (pain = 25%, dyspnea = 24%, symptom burden = 28%).

Figure 1

As symptom burden was our composite score for pain, dyspnea, and anxiety, we were interested in identifying variables in addition to primary diagnosis that might be associated with symptom burden at follow‐up. Bivariate analysis revealed that there was no significant association between symptom burden and age (² = 1.5; P = 0.5), gender (² = 1.3; P = 0.3), length of stay (² = 0.4; P = 0.8), and (IADL) level of independence (² = 0.3; P = 0.6). However, those with probable depression were more likely (² = 11.9; P = 0.001) to have a moderate/severe symptom burden (62%, n = 13), compared to those with no depression (24%, n = 23). After adjusting for severity of symptom burden at baseline, multivariate logistic regression revealed that primary diagnosis (P = 0.01) and probable depression (OR = 4.9; 95% CI = 1.6, 14.9; P = 0.005) were associated with symptom severity. Patients with COPD had greater odds (OR = 7.0; 95% CI = 1.9, 26.2; P = 0.002) of moderate/severe symptom burden than those with cancer, while those with HF did not (OR = 2.3; 95% CI = 0.7, 7.7; P = 0.16). There was significant interaction between primary diagnosis and depression (P = 0.2).

Primary Diagnosis, Symptom Burden, and Survival Time

A total of 75% of patients were identified by the National Death Index to have died between hospital discharge and December 2007, of which 47% had died within 12 months after discharge. KaplanMeier survival curves (Figure 2) revealed a significant difference (MantelCox: ² = 19.3; df = 1; P = 0.0001) in survival time, with patients diagnosed with COPD (median = 19.0 months; 95% CI = 6.5, 31.5) and HF (median = 20.0 months; 95% CI = 12.5, 27.5) having a longer survival than those with cancer (median = 8.0 months; 95% CI = 4.1, 11.9).

Figure 2

We also examined the relationship between symptom burden and survival time. KaplanMeier survival curves revealed no significant difference (MantelCox: ² = 0.2; P = 0.6) in the survival time of patients classified with a symptom burden of none/moderate (median = 15.0 months; 95% CI = 8.8, 21.2) or moderate/severe (median = 14.0 months; 95% CI = 2.6, 25.4).

DISCUSSION

In our sample of older inpatients diagnosed with cancer, HF, and COPD, a large proportion reported moderate‐to‐severe levels of pain, dyspnea, and anxiety at baseline and follow‐up. When combined, these levels represent a considerable symptom burden, with over three‐quarters of participants reporting 2 to 3 symptoms at a moderate/severe level at baseline. While symptom scores decreased at 24‐hours and 2‐week follow‐up, symptom burden remained high, with almost half of the participants reporting 23 symptoms at a moderate‐to‐severe level at 24‐hour assessment and a large minority reporting moderate‐to‐severe symptoms at follow‐up. A higher percentage of patients with COPD reported moderate‐to‐severe pain, dyspnea, and overall symptom burden at follow‐up than participants with cancer or HF who reported a similar symptom burden. We also found that patients with probable depression were more likely to have a significant symptom burden at follow‐up. These findings highlight the need to routinely assess and treat symptoms over time, including depression, and especially in patients with COPD. While we found that hospital care was seemingly effective in improving symptoms, they persist at distressing levels in many patients.

Few studies have assessed the severity of symptoms over time. One study that did, examined symptom severity among community‐based elders diagnosed with HF and COPD.6 At baseline, these participants had a lower prevalence of moderate‐to‐severe symptoms than the hospitalized patients enrolled in our study, a finding that would be anticipated, as they may not have been as ill. However, symptom severity persisted in the community‐based subjects and, in some cases, worsened over the 22‐month assessment period for pain (HF = 20% vs 42%; COPD = 27% vs 20%), dyspnea (HF = 19% vs 29%; COPD = 66% vs 76%), and anxiety (HF = 2% vs 12%; COPD = 32% vs 23%).6 In contrast, while our subjects with a primary diagnosis of HF and COPD had a higher prevalence of moderate‐to‐severe symptoms at baseline, they did experience an improvement in the severity of pain, dyspnea, and anxiety at the 2‐week follow‐up assessment. However, despite a decrease in the prevalence of moderate‐to‐severe symptoms from baseline to follow‐up, a high symptom burden persisted for many patients, particularly for those diagnosed with COPD and those with probable depression at baseline. The severity of a patient's symptoms can have a profound negative effect on health status and quality of life.14 Findings from these studies suggest that symptoms are currently not being adequately managed, and highlight an urgent need to develop coordinated strategies and systems that focus on improving the management of symptoms, including depression, over time.6

We also found that subjects recruited for this study had advanced disease, evidenced by the fact that nearly half died within 12 months. We did not use specific prognostic indices or severity of illness criteria for recruiting subjects and simply approached patients admitted with one of the target diagnoses. Our study suggests that targeting these patients for routine symptom assessment and management, including for palliative care, would be a reasonable approach given the high symptom burden and relatively high mortality at 1 year.

Interpretation of these findings should be mitigated by the following limitations. Because of our setting, our findings may not be generalizable to all patients with cancer, HF, and COPD. However, our subjects were admitted to general medical and cardiology services, and had common conditions, and therefore are likely similar to those presenting to other hospitals. We relied on self‐report measures to assess severity of symptoms. Patient self‐report, while potentially subject to imprecision due to poor recall and social demand biases, is considered the gold standard for symptom assessment.15 Finally, 2‐week follow‐up is relatively short, and it is possible that symptoms may have improved had we assessed them over a longer period. The longitudinal study of elders in the community that followed subjects over 22 months found that, for many patients, symptoms worsened over time and nearly half of our subjects died at 12 months, suggesting that longer follow‐up would have been unlikely to show improvement in symptoms.6

A significant minority of participants reported a substantial, persistent symptom burden, yet all symptoms assessed in our study are potentially modifiable. Recognizing and treating symptoms can be achieved through the use of targeted interventions.6 Because symptoms can occur in clusters, successful treatment of 1 symptom may also help to improve other symptoms.1 The large number of participants reporting moderate‐to‐severe levels of symptom burden at 2 weeks after discharge highlights an unmet need for improved symptom control in the outpatient setting. Unfortunately, while evidence exists for managing pain in patients with cancer, such evidence‐based practices are lacking for the management of pain and other symptoms in patients with HF and COPD. Some symptoms may require specific, disease‐oriented management. However, many symptoms may be due to common comorbidities, such as pain from degenerative joint disease, that may likely respond to proven treatments.16

Our study confirmed the significant burden of symptoms experienced by patients with serious illness and demonstrated that patients with COPD report as much symptom burden as patients with cancer and HF, if not more. While symptom severity improved over the course of the hospitalization and follow‐up, a large percentage of patients reported significant symptom burden at follow‐up. Depression was also common in these patients. Because these symptoms diminish quality of life, routine assessment and management of these symptoms is critical for improving the quality of care provided to these patients. Additional research on the best approaches to manage symptoms, including medications, interventions, and structures of care, could further improve care.

Despite an ideal of dying at home, most Americans die in hospitals.1 Patients and families are clear about what they need from the healthcare system at the end of life: relief of distressing symptoms, the opportunity to communicate with physicians and others about death and dying, and the assurance that they will be attended to and comforted by their physicians as they approach death.2, 3 However, discussions about patient preferences for care occur infrequently,47 even though patients want to discuss care with their doctor,68 and physicians believe these discussions are their responsibility.9

The most prominent work in this area occurred in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) study, which focused on patients with advanced disease, often in the intensive care unit.4 Furthermore, few studies have focused on general medical patients, and healthcare has changed in important ways since SUPPORT's publication. First, the Patient Self‐Determination Act (PSDA) requires that all patients be asked about their care wishes at the time of admission and document the presence of an advanced directive.10, 11 Second, there is growing awareness of the need to improve palliative care for all hospitalized patients, with many advocating that hospitalization itself is a reason to ask about patient's preferences for care regardless of a patient's level of chronic or acute illness.12 Finally, emergence of hospitalists,1316 movement toward closed intensive care units,17, 18 and changes in residency training have increased segmentation in care of hospitalized patients.15, 18

To overcome limitations of previous literature and update our knowledge of how care discussions take place in the current healthcare environment, we analyzed data from a large study of patients admitted to general medicine services at 6 academic centers. Using this robust dataset, which included prospectively collected information about preferences for communication with their physician, we performed statistical analyses to understand which patient clinical, sociodemographic, and preference‐related factors, as well as factors related to their site of care, were associated with documentation that a code status discussion took place at the time of hospital admission.

PATIENTS AND METHODS

RESULTS

DISCUSSION

In this multicenter study of hospitalized general medical patients, documentation of CDs were highly dependent on where patients received care and whether patients had previous documentation of a care plan. In contrast, although clinical, prognostic, and socioeconomic factors were also associated with whether physicians documented asking patients about their wishes for care, the influence of these factors was modest.

Improving communication between patients and their physicians during an episode of acute illness has been a long‐standing goal, with the Study to Understand Prognoses and Preferences for Outcomes of Treatment (SUPPORT) trial providing the most notable example of an effort to improve patient care through aligning patient wishes, prognosis, and aggressiveness for care. However, even the SUPPORT interventiona robust, well‐implemented, and highly labor‐intensive strategywas not able to achieve this goal. In their summary of SUPPORT study findings, the authors suggested that the likelihood of and effectiveness of communication in seriously ill patients may be powerfully influenced by patient and caregiver culture4; our findings may partially confirm SUPPORT's conclusions.

Preexisting documentation in our study would not have included mandated documentation that someone had given the patient information about advance directives (as mandated by the PSDA), but rather a specification for that advance care plan. This distinction means that preexisting documentation in our study represented a previous decision by the patient (or the patient and their physician) to have made a plan, and an association with hospital discussions may be because the first conversation is the hardest to undertake; subsequent discussions then represent confirmatory or clarifying discussions that may be less difficult to broach (particularly for less experienced trainees). A CD may have also been prompted when documentation was unclear, or when a change in prognosis took place (eg, a new diagnosis of metastatic cancer).22 Alternatively, a preexisting plan may serve as a reminder for clinicians to discuss code status, signify patients who are more willing to broach this subject, and either seem more approachable or bring up the topic themselves.

The influence of site on documentation and CD provides additional evidence that caregiver culture played a role in CDs. Although this variation may have been in part due to culture around documentation practices more generally, it is important to note that none of our participating centers had a policy for documentation of care wishes or patient‐doctor communication, or a policy mandating these discussions in any specific patient group. Furthermore, site‐related differences were seen even in patients with no preexisting documentation, and were seen after adjustment for other documentation or communication practices (eg, documenting a discussion with the patient's primary care provider), making it unlikely that documentation practices are solely responsible for our results. Persistence of variations in care documentation raises interesting questions, particularly when one considers recent data describing variations in end‐of‐life care between similar academic centers (one of which was a participating site in this trial).23 Given that the sites in our study represent diverse institutions yet share a number of characteristics, understanding the specific practices or aspects of medical culture that promote conversations may provide insights in how to improve this promotion elsewhere.

Our results would argue that mandates to document code status on admission may be unlikely to improve communication unless sites also develop an approach to using this newly documented information as a prompt for subsequent discussions. In nursing home settings, documentation of advance directives may reduce resource use, but it is unclear whether similar effects will be seen in hospital settings.24 It is also a challenge to insure that documentation of a care plan in the nursing home is communicated to the providers in the hospital.25 The PSDA was a first step in this direction, but its effects on improving communication are uncertain.26 Our results would confirm that the PSDA or systems to mandate documentation are not solutions in themselves, but are 2 steps in a larger process.

We do not want to discount our findings of less frequent CDs among patients of lower socioeconomic status, where gaps in quality of care, communication, and outcomes are well‐recognized.27 As such, our results delineate yet another area where practice can and should be improved for vulnerable patients. However, factors related to site of care and documentation may provide opportunities to improve care even more profoundly and within a fairly discrete (if complex) acute episode of care. Having said this, our results also demonstrate a potential pitfall of using code status documentation for risk‐adjustment, because such notation may be more dependent on local documentation patterns than clinical appropriateness.

Our study has a number of limitations. As an observational study, our findings are likely prone to biases related to unadjusted confounding due to comorbidity. The influence of comorbidity would seem to have been most important in biasing the effects of preexisting documentation, where documentation would be associated with more unaccounted comorbidity. However, there were no differences in documentation even after accounting for prognosis by adjusting for age, functional status, and a valid comorbidity score.28 As we have pointed out, our key outcome is based on documentation of communication and not actual communication, and as such may be biased in subtle ways not related to site of care or the items tested in our model. While we cannot directly eliminate the possibility of documentation biases in our results using statistical methods, it is important to point out that our chart abstraction protocol used highly specific criteria to detect these discussions, and therefore may under‐detect discussions which may have been documented in less detail. Our study did not examine whether documentation of CDs influenced subsequent care. However, previous studies have shown that advance care planning has only a minor influence on care.29 However, communication about preferences at the time of admission, when the need for specific care decisions may be more evident, may be more likely to influence hospital care. Our results show that previous documentation is associated with discussions early in an admission. Such discussion may affect care, even if the decision made is different than what was previously documented. In addition, patients who were included in our study (those able to provide consent and participate in an interview) may be healthier or more cognitively intact than a general population of hospitalized patients. However, how this would have affected our results is unclear. Being able to speak and consent for oneself are key facilitators to communication, but sicker patients who cannot consent or speak for themselves might also be more likely to have care planning decisions made based on illness severity; documentation in these patients may be more driven by whether such notes were required because of the involvement of home health services (or skilled nursing facilities). Finally, although our study is one of the largest examinations of in‐hospital communication to date and its implications for resident education are worth noting, the sites involved in the MCHS may not be representative of nonteaching hospitals, or community‐based teaching hospitals.

Our results suggest that, although comorbid illness and socioeconomic status play an important role in determining which patients receive CDs at the time of admission, these factors are substantially less powerful than preexisting documentation practices and culture or care practices specific to their site of care. These results suggest that future work should consider organizational characteristics and culture as important targets for interventions to improve care planning in hospitalized patients.

Despite an ideal of dying at home, most Americans die in hospitals.1 Patients and families are clear about what they need from the healthcare system at the end of life: relief of distressing symptoms, the opportunity to communicate with physicians and others about death and dying, and the assurance that they will be attended to and comforted by their physicians as they approach death.2, 3 However, discussions about patient preferences for care occur infrequently,47 even though patients want to discuss care with their doctor,68 and physicians believe these discussions are their responsibility.9

The most prominent work in this area occurred in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) study, which focused on patients with advanced disease, often in the intensive care unit.4 Furthermore, few studies have focused on general medical patients, and healthcare has changed in important ways since SUPPORT's publication. First, the Patient Self‐Determination Act (PSDA) requires that all patients be asked about their care wishes at the time of admission and document the presence of an advanced directive.10, 11 Second, there is growing awareness of the need to improve palliative care for all hospitalized patients, with many advocating that hospitalization itself is a reason to ask about patient's preferences for care regardless of a patient's level of chronic or acute illness.12 Finally, emergence of hospitalists,1316 movement toward closed intensive care units,17, 18 and changes in residency training have increased segmentation in care of hospitalized patients.15, 18

To overcome limitations of previous literature and update our knowledge of how care discussions take place in the current healthcare environment, we analyzed data from a large study of patients admitted to general medicine services at 6 academic centers. Using this robust dataset, which included prospectively collected information about preferences for communication with their physician, we performed statistical analyses to understand which patient clinical, sociodemographic, and preference‐related factors, as well as factors related to their site of care, were associated with documentation that a code status discussion took place at the time of hospital admission.

PATIENTS AND METHODS

RESULTS

DISCUSSION

In this multicenter study of hospitalized general medical patients, documentation of CDs were highly dependent on where patients received care and whether patients had previous documentation of a care plan. In contrast, although clinical, prognostic, and socioeconomic factors were also associated with whether physicians documented asking patients about their wishes for care, the influence of these factors was modest.

Improving communication between patients and their physicians during an episode of acute illness has been a long‐standing goal, with the Study to Understand Prognoses and Preferences for Outcomes of Treatment (SUPPORT) trial providing the most notable example of an effort to improve patient care through aligning patient wishes, prognosis, and aggressiveness for care. However, even the SUPPORT interventiona robust, well‐implemented, and highly labor‐intensive strategywas not able to achieve this goal. In their summary of SUPPORT study findings, the authors suggested that the likelihood of and effectiveness of communication in seriously ill patients may be powerfully influenced by patient and caregiver culture4; our findings may partially confirm SUPPORT's conclusions.

Preexisting documentation in our study would not have included mandated documentation that someone had given the patient information about advance directives (as mandated by the PSDA), but rather a specification for that advance care plan. This distinction means that preexisting documentation in our study represented a previous decision by the patient (or the patient and their physician) to have made a plan, and an association with hospital discussions may be because the first conversation is the hardest to undertake; subsequent discussions then represent confirmatory or clarifying discussions that may be less difficult to broach (particularly for less experienced trainees). A CD may have also been prompted when documentation was unclear, or when a change in prognosis took place (eg, a new diagnosis of metastatic cancer).22 Alternatively, a preexisting plan may serve as a reminder for clinicians to discuss code status, signify patients who are more willing to broach this subject, and either seem more approachable or bring up the topic themselves.

The influence of site on documentation and CD provides additional evidence that caregiver culture played a role in CDs. Although this variation may have been in part due to culture around documentation practices more generally, it is important to note that none of our participating centers had a policy for documentation of care wishes or patient‐doctor communication, or a policy mandating these discussions in any specific patient group. Furthermore, site‐related differences were seen even in patients with no preexisting documentation, and were seen after adjustment for other documentation or communication practices (eg, documenting a discussion with the patient's primary care provider), making it unlikely that documentation practices are solely responsible for our results. Persistence of variations in care documentation raises interesting questions, particularly when one considers recent data describing variations in end‐of‐life care between similar academic centers (one of which was a participating site in this trial).23 Given that the sites in our study represent diverse institutions yet share a number of characteristics, understanding the specific practices or aspects of medical culture that promote conversations may provide insights in how to improve this promotion elsewhere.

Our results would argue that mandates to document code status on admission may be unlikely to improve communication unless sites also develop an approach to using this newly documented information as a prompt for subsequent discussions. In nursing home settings, documentation of advance directives may reduce resource use, but it is unclear whether similar effects will be seen in hospital settings.24 It is also a challenge to insure that documentation of a care plan in the nursing home is communicated to the providers in the hospital.25 The PSDA was a first step in this direction, but its effects on improving communication are uncertain.26 Our results would confirm that the PSDA or systems to mandate documentation are not solutions in themselves, but are 2 steps in a larger process.

We do not want to discount our findings of less frequent CDs among patients of lower socioeconomic status, where gaps in quality of care, communication, and outcomes are well‐recognized.27 As such, our results delineate yet another area where practice can and should be improved for vulnerable patients. However, factors related to site of care and documentation may provide opportunities to improve care even more profoundly and within a fairly discrete (if complex) acute episode of care. Having said this, our results also demonstrate a potential pitfall of using code status documentation for risk‐adjustment, because such notation may be more dependent on local documentation patterns than clinical appropriateness.

Our study has a number of limitations. As an observational study, our findings are likely prone to biases related to unadjusted confounding due to comorbidity. The influence of comorbidity would seem to have been most important in biasing the effects of preexisting documentation, where documentation would be associated with more unaccounted comorbidity. However, there were no differences in documentation even after accounting for prognosis by adjusting for age, functional status, and a valid comorbidity score.28 As we have pointed out, our key outcome is based on documentation of communication and not actual communication, and as such may be biased in subtle ways not related to site of care or the items tested in our model. While we cannot directly eliminate the possibility of documentation biases in our results using statistical methods, it is important to point out that our chart abstraction protocol used highly specific criteria to detect these discussions, and therefore may under‐detect discussions which may have been documented in less detail. Our study did not examine whether documentation of CDs influenced subsequent care. However, previous studies have shown that advance care planning has only a minor influence on care.29 However, communication about preferences at the time of admission, when the need for specific care decisions may be more evident, may be more likely to influence hospital care. Our results show that previous documentation is associated with discussions early in an admission. Such discussion may affect care, even if the decision made is different than what was previously documented. In addition, patients who were included in our study (those able to provide consent and participate in an interview) may be healthier or more cognitively intact than a general population of hospitalized patients. However, how this would have affected our results is unclear. Being able to speak and consent for oneself are key facilitators to communication, but sicker patients who cannot consent or speak for themselves might also be more likely to have care planning decisions made based on illness severity; documentation in these patients may be more driven by whether such notes were required because of the involvement of home health services (or skilled nursing facilities). Finally, although our study is one of the largest examinations of in‐hospital communication to date and its implications for resident education are worth noting, the sites involved in the MCHS may not be representative of nonteaching hospitals, or community‐based teaching hospitals.

Our results suggest that, although comorbid illness and socioeconomic status play an important role in determining which patients receive CDs at the time of admission, these factors are substantially less powerful than preexisting documentation practices and culture or care practices specific to their site of care. These results suggest that future work should consider organizational characteristics and culture as important targets for interventions to improve care planning in hospitalized patients.

Despite an ideal of dying at home, most Americans die in hospitals.1 Patients and families are clear about what they need from the healthcare system at the end of life: relief of distressing symptoms, the opportunity to communicate with physicians and others about death and dying, and the assurance that they will be attended to and comforted by their physicians as they approach death.2, 3 However, discussions about patient preferences for care occur infrequently,47 even though patients want to discuss care with their doctor,68 and physicians believe these discussions are their responsibility.9

The most prominent work in this area occurred in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) study, which focused on patients with advanced disease, often in the intensive care unit.4 Furthermore, few studies have focused on general medical patients, and healthcare has changed in important ways since SUPPORT's publication. First, the Patient Self‐Determination Act (PSDA) requires that all patients be asked about their care wishes at the time of admission and document the presence of an advanced directive.10, 11 Second, there is growing awareness of the need to improve palliative care for all hospitalized patients, with many advocating that hospitalization itself is a reason to ask about patient's preferences for care regardless of a patient's level of chronic or acute illness.12 Finally, emergence of hospitalists,1316 movement toward closed intensive care units,17, 18 and changes in residency training have increased segmentation in care of hospitalized patients.15, 18

To overcome limitations of previous literature and update our knowledge of how care discussions take place in the current healthcare environment, we analyzed data from a large study of patients admitted to general medicine services at 6 academic centers. Using this robust dataset, which included prospectively collected information about preferences for communication with their physician, we performed statistical analyses to understand which patient clinical, sociodemographic, and preference‐related factors, as well as factors related to their site of care, were associated with documentation that a code status discussion took place at the time of hospital admission.

PATIENTS AND METHODS

RESULTS

DISCUSSION

In this multicenter study of hospitalized general medical patients, documentation of CDs were highly dependent on where patients received care and whether patients had previous documentation of a care plan. In contrast, although clinical, prognostic, and socioeconomic factors were also associated with whether physicians documented asking patients about their wishes for care, the influence of these factors was modest.

Improving communication between patients and their physicians during an episode of acute illness has been a long‐standing goal, with the Study to Understand Prognoses and Preferences for Outcomes of Treatment (SUPPORT) trial providing the most notable example of an effort to improve patient care through aligning patient wishes, prognosis, and aggressiveness for care. However, even the SUPPORT interventiona robust, well‐implemented, and highly labor‐intensive strategywas not able to achieve this goal. In their summary of SUPPORT study findings, the authors suggested that the likelihood of and effectiveness of communication in seriously ill patients may be powerfully influenced by patient and caregiver culture4; our findings may partially confirm SUPPORT's conclusions.

Preexisting documentation in our study would not have included mandated documentation that someone had given the patient information about advance directives (as mandated by the PSDA), but rather a specification for that advance care plan. This distinction means that preexisting documentation in our study represented a previous decision by the patient (or the patient and their physician) to have made a plan, and an association with hospital discussions may be because the first conversation is the hardest to undertake; subsequent discussions then represent confirmatory or clarifying discussions that may be less difficult to broach (particularly for less experienced trainees). A CD may have also been prompted when documentation was unclear, or when a change in prognosis took place (eg, a new diagnosis of metastatic cancer).22 Alternatively, a preexisting plan may serve as a reminder for clinicians to discuss code status, signify patients who are more willing to broach this subject, and either seem more approachable or bring up the topic themselves.

The influence of site on documentation and CD provides additional evidence that caregiver culture played a role in CDs. Although this variation may have been in part due to culture around documentation practices more generally, it is important to note that none of our participating centers had a policy for documentation of care wishes or patient‐doctor communication, or a policy mandating these discussions in any specific patient group. Furthermore, site‐related differences were seen even in patients with no preexisting documentation, and were seen after adjustment for other documentation or communication practices (eg, documenting a discussion with the patient's primary care provider), making it unlikely that documentation practices are solely responsible for our results. Persistence of variations in care documentation raises interesting questions, particularly when one considers recent data describing variations in end‐of‐life care between similar academic centers (one of which was a participating site in this trial).23 Given that the sites in our study represent diverse institutions yet share a number of characteristics, understanding the specific practices or aspects of medical culture that promote conversations may provide insights in how to improve this promotion elsewhere.

Our results would argue that mandates to document code status on admission may be unlikely to improve communication unless sites also develop an approach to using this newly documented information as a prompt for subsequent discussions. In nursing home settings, documentation of advance directives may reduce resource use, but it is unclear whether similar effects will be seen in hospital settings.24 It is also a challenge to insure that documentation of a care plan in the nursing home is communicated to the providers in the hospital.25 The PSDA was a first step in this direction, but its effects on improving communication are uncertain.26 Our results would confirm that the PSDA or systems to mandate documentation are not solutions in themselves, but are 2 steps in a larger process.

We do not want to discount our findings of less frequent CDs among patients of lower socioeconomic status, where gaps in quality of care, communication, and outcomes are well‐recognized.27 As such, our results delineate yet another area where practice can and should be improved for vulnerable patients. However, factors related to site of care and documentation may provide opportunities to improve care even more profoundly and within a fairly discrete (if complex) acute episode of care. Having said this, our results also demonstrate a potential pitfall of using code status documentation for risk‐adjustment, because such notation may be more dependent on local documentation patterns than clinical appropriateness.

Our study has a number of limitations. As an observational study, our findings are likely prone to biases related to unadjusted confounding due to comorbidity. The influence of comorbidity would seem to have been most important in biasing the effects of preexisting documentation, where documentation would be associated with more unaccounted comorbidity. However, there were no differences in documentation even after accounting for prognosis by adjusting for age, functional status, and a valid comorbidity score.28 As we have pointed out, our key outcome is based on documentation of communication and not actual communication, and as such may be biased in subtle ways not related to site of care or the items tested in our model. While we cannot directly eliminate the possibility of documentation biases in our results using statistical methods, it is important to point out that our chart abstraction protocol used highly specific criteria to detect these discussions, and therefore may under‐detect discussions which may have been documented in less detail. Our study did not examine whether documentation of CDs influenced subsequent care. However, previous studies have shown that advance care planning has only a minor influence on care.29 However, communication about preferences at the time of admission, when the need for specific care decisions may be more evident, may be more likely to influence hospital care. Our results show that previous documentation is associated with discussions early in an admission. Such discussion may affect care, even if the decision made is different than what was previously documented. In addition, patients who were included in our study (those able to provide consent and participate in an interview) may be healthier or more cognitively intact than a general population of hospitalized patients. However, how this would have affected our results is unclear. Being able to speak and consent for oneself are key facilitators to communication, but sicker patients who cannot consent or speak for themselves might also be more likely to have care planning decisions made based on illness severity; documentation in these patients may be more driven by whether such notes were required because of the involvement of home health services (or skilled nursing facilities). Finally, although our study is one of the largest examinations of in‐hospital communication to date and its implications for resident education are worth noting, the sites involved in the MCHS may not be representative of nonteaching hospitals, or community‐based teaching hospitals.

Our results suggest that, although comorbid illness and socioeconomic status play an important role in determining which patients receive CDs at the time of admission, these factors are substantially less powerful than preexisting documentation practices and culture or care practices specific to their site of care. These results suggest that future work should consider organizational characteristics and culture as important targets for interventions to improve care planning in hospitalized patients.

As these conversations illustrate, discussing preferences regarding resuscitation is a challenging and important task for physicians. Understanding patients' wishes at the end of life allows clinicians to provide the type of care patients want, to avoid unwanted interventions, and to promote patient autonomy and dignity. Despite the frequency with which physicians have these conversations, they typically fall short when discussing code status with patients. Clinicians fail to address patients' concerns, monopolize conversations, and commonly misunderstand patients' resuscitation preferences.13 Often these discussions do not occur at all; more than 70% of seriously ill patients have never discussed advance directives with their physician.2, 4 The multicenter SUPPORT study, which demonstrated serious problems in the care of seriously ill hospitalized patients, documented that only 47% of physicians knew when their patients preferred do‐not‐resuscitate status.5

Hospitalists frequently conduct resuscitation discussions. Patients who are admitted to the hospital are usually seriously ill, and hospitalists need to assess rapidly whether an individual patient would want a resuscitation attempt if he or she had a cardiopulmonary arrest in the hospital. They need to build trust and rapport quickly with patients they have never met. Despite this challenge, hospitalists are in a good position to discuss resuscitation preferences.6 Patients may be more willing to discuss these issues in inpatient rather than outpatient settings because their acute deterioration may encourage self‐reflection.6 Furthermore, the time and productivity pressures of office practice often make it difficult for primary care physicians, who often know the patient and family best, to address advance directives. Although studies have documented that patients are interested in talking to their primary physicians about these matters,7, 8 these conversations do not occur with regularity. Preliminary research has raised the possibility that cancer patients may actually prefer to discuss these issues in an inpatient setting with a hospital‐based provider rather than with their oncologists.9 Studies have not addressed the question of whether patients with diseases other than cancer would prefer to discuss these issues with a hospitalist or their outpatient subspecialist.

Given that more than half of all Americans die in hospitals, hospitalists care for many people who are terminally ill and will need to assess preferences for cardiopulmonary resuscitation (CPR) and other treatments. Hospitalists need to be competent and compassionate in their approach to patients and their families. In this articles we review clinician barriers to holding these conversations, offer a variety of approaches to enhance these discussions, and review communication techniques that can be used to improve understanding.

Clinician Barriers to Discussing Resuscitation

Clinicians' own barriers may lead to infrequent and inadequate conversations about resuscitation. Understanding these barriers may allow providers to overcome them and facilitate better and more frequent communication. A discussion of patient barriers is beyond the scope of this article.

Laying Groundwork for the Discussion

The decision regarding resuscitation should be seen in the context of the patient's goals and values and overall health status. To address code status effectively, it is imperative first to elicit the person's view of his/her illness and then gently correct any misunderstandings. A patient who thinks her/his life will go on indefinitely may feel no need to consider her/his own mortality or alternatives to full resuscitation status. Alternatively, a patient who senses his/her mortality may have already thought about resuscitation and have clear preferences. A key first step in the conversation is to understand a patient's values and goals and comprehension of his/her illness. As in the second discussion above, a clinician can begin a discussion by saying, Tell me what you understand about your illness.

Discussing prognosis with patients can be difficult as physicians struggle with uncertainty. In the most comprehensive study to date of prognostication, physicians overestimated patient survival on average by a factor of 5.31 Nonetheless, there are compelling reasons to discuss prognosis. Failure to do so often results in patients spending their last days in the hospital receiving more aggressive treatments than they might choose if they understood their prognoses.32 Further, patients are denied the opportunity to address issues of life closure, such as spending time with family, thinking about legacy, and settling financial affairs. Physicians also fear they will take away hope with prognostication and believe patients expect greater accuracy than they can provide.33

Physicians can improve their prognostication skills by considering patients' functional status and clinical signs and symptoms and by using validated scales. The Karnofsky Performance Score (KPS) and the Eastern Cooperative Oncology Group (ECOG) Performance Status have been shown to correlate with survival,3440 and the Palliative Prognostic Score (PaP) has been validated in both cancer and noncancer patients.41, 4446 The PaP uses a combination of the KPS, clinical signs and symptoms, and the clinician's clinical prediction of survival. In addition, clinicians can be honest with patients about prognostic uncertainties and give prognoses in ranges, such as days to weeks, or weeks to months.

How to Broach the Subject of Resuscitation

In the first scenario presented in this article, the hospitalist says, There's something I need to talk with you about that I talk with all of my patients about. Although many clinicians begin resuscitation discussions this way, the question is problematic because often it is untrue. Most clinicians do not discuss code status with all patients who are admitted to the hospital. A better option would be to say, When I take care of patients with advanced cancer, I like to talk with them about their wishes regarding resuscitation. Is that all right? Better yet would be to ask a general question such as As you look ahead, what worries you most? or As you look to the future, what do you hope for? These and other useful questions appear in Table 1. These questions allow patients to bring up their concerns, show that the clinician cares about them, and often segue into a discussion of patients' hopes and worries about their own death and dying process. These questions often allow patients to bring up important goals that bear directly on the issue of resuscitation. For example, in the second scenario at the beginning of the article, the patient says she wants to have quality time with her family at home and does not want life‐sustaining technologies. Such a patient may not want resuscitation. When discussing CPR, it can also be helpful to state explicitly that resuscitation is used when a patient has died, rather than to use euphemisms such as, If your heart were to stop. The clinician can ask explicitly, If you were to die, would you want? There are other strategies for introducing the subject of resuscitation if these questions do not work. If a patient seems uncomfortable with the conversation, the clinician can address this discomfort directly by saying, This conversation seems to make you uncomfortable. Other strategies for exploring these issues include inquiring if the person has ever discussed resuscitation with his/her family or another physician, or asking if anyone else in the family has been very sick. Additionally, clinicians can ask questions about surrogate decision making. If you were to get so sick that you were unable to make decisions for yourself, who would you want to make them for you? This can then lead into a discussion of whether the patient has spoken to that person about his/her preferences, and if so, what was the content of that conversation. Another useful question is, Is there any state that would be worse than death for you? This question focuses on outcomes and allows the physician to put the issue of resuscitation into perspective for a patient.

Knowing the Facts about Cardiopulmonary Resuscitation

In general, about 1 in 7 patients who have undergone CPR in the hospital survive to hospital discharge. Two literature reviews, from 1989 and 1998, of hospitalized patients who underwent CPR in the hospital reported surprisingly similar statistics. Immediate survival in both series was 41%, and survival to hospital discharge was 13%‐14%. Factors that increased survival included arrest due to coronary artery disease or drug overdose/adverse reaction, and location of arrest in the intensive care unit (ICU). Factors that decreased survival included sepsis at time of arrest, cancer, whether localized or metastatic, dementia, acute renal failure, bed‐bound status, and residence in a nursing home. Neither age nor sex was associated with survival.47, 48 In a meta‐analysis of outcome studies of CPR in metastatic cancer patients, none of 117 patients survived to hospital discharge.49

Most people get their information about CPR survival rates from the mass media, which portray CPR as a very successful procedure. For instance, on television, the sole source of information on CPR for most patients, the rate of survival to hospital discharge is 64%, much higher than the 1314% cited in the medical literature.50 Thus, it is no surprise that a patient with metastatic cancer or another life‐limiting illness would assume a positive outcome with CPR.

Knowledge of the facts about CPR survival rates is key when a physician discusses code status with a patient because these data influence patients' decisions. Patients who have a realistic understanding of their chances are less likely to prefer resuscitation.51, 52 Offering patients information about the success rate for CPR in their particular situation is critical in helping them reach a decision consistent with their values and goals. This information can be given quantitatively or qualitatively depending on the clinician assessment of what the patient would prefer.

Avoiding Stark Dichotomies in Resuscitation Discussions

In clinical practice there are 3 ways in which physicians can present resuscitation decisions as black and white and ignore the shades of gray. First, clinicians may present the choice between resuscitation and do not resuscitate (DNR) as a choice between life and death. In the first scenario above, the physician states If your heart were to stop, do you want us to do everything to bring you back? implying he would be able to save the patient's life with resuscitation attempts. When discussing resuscitation, clinicians should avoid language that suggests such a stark dichotomy. The reality is that most patients die despite resuscitation attempts. In fact, a patient is actually choosing between certain death (without resuscitation) and likely death (if resuscitation is attempted). For a patient with a serious, life‐limiting illness, it may be more effective to frame the conversation in terms of how that person envisions the end of life, and not whether death will eventually occur.

Second, clinicians and patients sometimes equate DNR with doing nothing or giving up. Clinicians fail to discuss other treatment options or alternatives, such as continuing ongoing aggressive medical treatments with DNR status or pursuing palliative care. Performing resuscitation is equated with activity and treatment, whereas withholding resuscitation is seen as passivity and giving up. To the patient, this can feel like abandonment, as if the doctor is withholding a treatment and not offering anything in its place. Examples of positive phrases that demonstrate the physician will continue to offer excellent care include: We will continue maximal medical therapy. However, if you die despite these treatments, we will let you die peacefully and won't attempt to revive you; We'll continue the intravenous antibiotics, but we won't plan to move you to the ICU if things worsen53; and We will work hard to treat your pain and other symptoms and to get you home. In addition, hospitalists must ensure, when signing out to physician colleagues, nurses, respiratory therapists, and others, that DNR orders are not overinterpreted to mean no treatment. Although a DNR order states that in the event of a cardiac arrest, no attempt at resuscitation will be made, it should have no bearing on other appropriate and desired interventions, including antibiotics, chemotherapy, and artificial nutrition; treatment for pain and other symptoms; and even monitoring in an ICU. This misunderstanding of DNR status is common among health care providers and has led many to argue that DNR orders should be part of a more comprehensive treatment plan that outlines where the patient's wishes for treatment fall on the spectrum from otherwise aggressive measures to comfort care.54, 55 Physicians who have a clear understanding of a DNR order will be able to reassure a patient that they will continue to receive desired care, but that if the patient dies, no attempt to resuscitate will be made.

Third, it is important to remind patients who choose full resuscitation status that additional decisions will need to be made if resuscitation is successful. Most patients who survive cardiopulmonary arrest end up worse off clinically and spend time in an ICU with life‐support measures in place, such as mechanical ventilation and vasopressors. Even if they survive, there will likely be a period during which they are unable to speak for themselves. This situation puts the burden of decision making on their surrogates or an appointed durable power of attorney for health care (DPOA‐HC). It is important to ask patients ahead of time whether there are conditions under which they would not want ongoing life‐sustaining measures. For example, a person might opt for discontinuation of life‐support measures if the physician and family agreed that there was only a minimal chance of cognitive recovery existed and that ongoing support was only prolonging inevitable death. To clarify the patient's wishes in this situation, you might ask, Are there conditions that would be worse than death? Encouraging the patient to share his/her wishes in this situation with a surrogate or DPOA‐HC will help to ensure those wishes are respected.

Communication Techniques

When discussing advance directives, it is important to give patients the chance to describe their life goals and their values to establish a context for understanding the role of life‐sustaining treatments. One useful method to elicit these goals and values is to ask open‐ended questions, followed by periods of silence so the patient has time to express himself/herself. In the second scenario, above, the physician used open‐ended questions in several instances: Tell me what you understand about your illness and As you look ahead, what worries you most? Tulsky and colleagues documented that medical residents spoke 76% of the time in discussions with patients about code status.30 In an ideal case, this ratio should be reversed or at least be even, allowing patients the time to explain their thoughts. Acknowledging patients' emotions by stating simply, You seem [angry/sad/perplexed], and waiting for an answer can help patients feel they are being understood. Making empathic statements is another powerful communication technique that conveys understanding.56 Examples include, That must be really sad for you, and It must be frightening to be in so much pain. As noted, silence can also be a powerful tool. Clinicians tend to be uncomfortable with silence and so fill the gaps with words. Allowing for silence enables patients to digest what they have heard, encourages them to continue speaking, and shows them the clinician wants to hear what they have to say. When giving information about any medical issues and especially about CPR, it is important to explain concepts in lay terms and to avoid medical jargon.57 Additionally, nonverbal communication techniques such as making eye contact, head nodding, and leaning in toward the patient all help in communicating engagement in the conversation. Having the conversation in a quiet and private place and sitting at the same level as the patient or family is also important. It is always a good idea to check in with patients to assess their understanding. Simply asking, Do you have any questions about what I said? or Does that all make sense? gives patients the opportunity to ask for clarification. Attempting to summarize what a patient has said can also help to clarify misunderstandings. Useful phrases include, Let me see if I've gotten this right or I want to make sure that I understood what you're telling me, followed by the clinician's synopsis of important points discussed.58 A summary of important communication techniques can be found in Table 2.

There are 2 additional statements that can be very useful when patients and families are struggling with the reality of severe illness and are still hoping for longer life and cure. The first is the I wish statement, in which the clinician allies himself or herself with the patient's or family's wishes by stating, I wish it were different. I wish there were more chemotherapy we could give you that would make a difference.59 Occasionally, when tension is developing because the clinician does not believe an intervention is warranted but the patient desires it nonetheless, the I wish statement can be a powerful way of realigning with the patient. For example, responding to a patient who says, I want chemo to cure my cancer, with the statement There is no chemotherapy to help you can seem antagonistic. In contrast, saying, I wish there were a treatment that would make your cancer go away aligns the clinician with the patient and supports the patient. Another advantage of I wish statements is that they are truethe clinician does wish that there was an effective treatment and would gladly provide it if available. In general, I wish statements are more effective than I'm sorry statements, because the latter can be interpreted as the clinician taking responsibility for the situation. When a provider says, I'm sorry to give you this bad news, the patient may feel the need to say, That's OK. On the other hand, saying, I'm so sorry that your mother is dying, is very human and unlikely to be interpreted as the clinician taking responsibility for the death.

A similar technique is to use the statement Hope for the best, prepare for the worst when speaking with patients and families.60 For example, a physician could say, I really wish your mother could get better, and we should still hope for that; at the same time, we need to prepare for what will happen if she doesn't get better. Once again, this phrase both allows the patient or family to continue hoping things will improve and the clinician to support this hope, while simultaneously beginning the process of planning for the more likely outcome. Over time, the patient and family often move toward accepting that the patient is dying. Finally, trying to help the patient or family maintain hope in the face of illness and death is challenging but important: If your mother can't get better, are there other things you can hope for? Helping to identify tangible and realistic goals, such as being free from pain, seeing an important family member one last time, or getting home can provide hope at a difficult time.

Giving a Recommendation

Most patients with serious illness and their families want help making complex and ethically charged decisions. When clinicians ask patients to make decisions unilaterally, patients often feel anxious, sometimes for weeks.61 Families are often paralyzed when faced with the very difficult decision of whether to withdraw life‐sustaining interventions from a family member with an advanced terminal illness. Even if they understand on an intellectual level that ceasing to provide potentially curative or life‐prolonging therapies is the best choice, they are not yet able to accept this decision on an emotional level and ultimately may feel responsible and then guilty for the patient's death. Physicians need to carry some of the burden of making these difficult decisions. One way to relieve family members of some of this guilt is to recommend a plan of care based on substituted judgment, that is, on what the patient said she or he wanted or what the family thinks the patient would have wanted.6264 In addition, clinicians should use their medical expertise, experience, and understanding of the situation to make recommendations. The patient or family can then accept or reject the physician's advice, which maintains patient autonomy, yet not have to explicitly instruct the clinician to withdraw or limit life‐sustaining interventions.

The preceding discussion and recommendations can guide scenarios like those presented at the beginning of this article. In the second conversation, the clinician had just told the patient that he could help her to achieve her goal of pain control and of returning and staying home.

CONCLUSIONS

The decision about cardiopulmonary resuscitation is part of a larger conversation with a patient about how she or he wants to spend the rest of his/her life. Importantly, the decision should be made in context, rather than in isolation. Given the understanding that develops between physician and patient in the conversation above, it is not necessary to describe all the specific treatments that occur during CPR because the physician has already established that the patient does not want to return to the hospital, and she understands that she has a terminal condition and is dying. Through exploring a patient's goals and values, a clinician can discover a patient's preferences for care generally and come up with a comprehensive plan that addresses the particular individual's medical, social, and emotional needs. For physicians, few interventions are as important or rewarding as relieving patients' suffering and helping them attain their goals during and at the end of life.

As these conversations illustrate, discussing preferences regarding resuscitation is a challenging and important task for physicians. Understanding patients' wishes at the end of life allows clinicians to provide the type of care patients want, to avoid unwanted interventions, and to promote patient autonomy and dignity. Despite the frequency with which physicians have these conversations, they typically fall short when discussing code status with patients. Clinicians fail to address patients' concerns, monopolize conversations, and commonly misunderstand patients' resuscitation preferences.13 Often these discussions do not occur at all; more than 70% of seriously ill patients have never discussed advance directives with their physician.2, 4 The multicenter SUPPORT study, which demonstrated serious problems in the care of seriously ill hospitalized patients, documented that only 47% of physicians knew when their patients preferred do‐not‐resuscitate status.5

Hospitalists frequently conduct resuscitation discussions. Patients who are admitted to the hospital are usually seriously ill, and hospitalists need to assess rapidly whether an individual patient would want a resuscitation attempt if he or she had a cardiopulmonary arrest in the hospital. They need to build trust and rapport quickly with patients they have never met. Despite this challenge, hospitalists are in a good position to discuss resuscitation preferences.6 Patients may be more willing to discuss these issues in inpatient rather than outpatient settings because their acute deterioration may encourage self‐reflection.6 Furthermore, the time and productivity pressures of office practice often make it difficult for primary care physicians, who often know the patient and family best, to address advance directives. Although studies have documented that patients are interested in talking to their primary physicians about these matters,7, 8 these conversations do not occur with regularity. Preliminary research has raised the possibility that cancer patients may actually prefer to discuss these issues in an inpatient setting with a hospital‐based provider rather than with their oncologists.9 Studies have not addressed the question of whether patients with diseases other than cancer would prefer to discuss these issues with a hospitalist or their outpatient subspecialist.

Given that more than half of all Americans die in hospitals, hospitalists care for many people who are terminally ill and will need to assess preferences for cardiopulmonary resuscitation (CPR) and other treatments. Hospitalists need to be competent and compassionate in their approach to patients and their families. In this articles we review clinician barriers to holding these conversations, offer a variety of approaches to enhance these discussions, and review communication techniques that can be used to improve understanding.

Clinician Barriers to Discussing Resuscitation

Clinicians' own barriers may lead to infrequent and inadequate conversations about resuscitation. Understanding these barriers may allow providers to overcome them and facilitate better and more frequent communication. A discussion of patient barriers is beyond the scope of this article.

Laying Groundwork for the Discussion

The decision regarding resuscitation should be seen in the context of the patient's goals and values and overall health status. To address code status effectively, it is imperative first to elicit the person's view of his/her illness and then gently correct any misunderstandings. A patient who thinks her/his life will go on indefinitely may feel no need to consider her/his own mortality or alternatives to full resuscitation status. Alternatively, a patient who senses his/her mortality may have already thought about resuscitation and have clear preferences. A key first step in the conversation is to understand a patient's values and goals and comprehension of his/her illness. As in the second discussion above, a clinician can begin a discussion by saying, Tell me what you understand about your illness.

Discussing prognosis with patients can be difficult as physicians struggle with uncertainty. In the most comprehensive study to date of prognostication, physicians overestimated patient survival on average by a factor of 5.31 Nonetheless, there are compelling reasons to discuss prognosis. Failure to do so often results in patients spending their last days in the hospital receiving more aggressive treatments than they might choose if they understood their prognoses.32 Further, patients are denied the opportunity to address issues of life closure, such as spending time with family, thinking about legacy, and settling financial affairs. Physicians also fear they will take away hope with prognostication and believe patients expect greater accuracy than they can provide.33

Physicians can improve their prognostication skills by considering patients' functional status and clinical signs and symptoms and by using validated scales. The Karnofsky Performance Score (KPS) and the Eastern Cooperative Oncology Group (ECOG) Performance Status have been shown to correlate with survival,3440 and the Palliative Prognostic Score (PaP) has been validated in both cancer and noncancer patients.41, 4446 The PaP uses a combination of the KPS, clinical signs and symptoms, and the clinician's clinical prediction of survival. In addition, clinicians can be honest with patients about prognostic uncertainties and give prognoses in ranges, such as days to weeks, or weeks to months.

How to Broach the Subject of Resuscitation

In the first scenario presented in this article, the hospitalist says, There's something I need to talk with you about that I talk with all of my patients about. Although many clinicians begin resuscitation discussions this way, the question is problematic because often it is untrue. Most clinicians do not discuss code status with all patients who are admitted to the hospital. A better option would be to say, When I take care of patients with advanced cancer, I like to talk with them about their wishes regarding resuscitation. Is that all right? Better yet would be to ask a general question such as As you look ahead, what worries you most? or As you look to the future, what do you hope for? These and other useful questions appear in Table 1. These questions allow patients to bring up their concerns, show that the clinician cares about them, and often segue into a discussion of patients' hopes and worries about their own death and dying process. These questions often allow patients to bring up important goals that bear directly on the issue of resuscitation. For example, in the second scenario at the beginning of the article, the patient says she wants to have quality time with her family at home and does not want life‐sustaining technologies. Such a patient may not want resuscitation. When discussing CPR, it can also be helpful to state explicitly that resuscitation is used when a patient has died, rather than to use euphemisms such as, If your heart were to stop. The clinician can ask explicitly, If you were to die, would you want? There are other strategies for introducing the subject of resuscitation if these questions do not work. If a patient seems uncomfortable with the conversation, the clinician can address this discomfort directly by saying, This conversation seems to make you uncomfortable. Other strategies for exploring these issues include inquiring if the person has ever discussed resuscitation with his/her family or another physician, or asking if anyone else in the family has been very sick. Additionally, clinicians can ask questions about surrogate decision making. If you were to get so sick that you were unable to make decisions for yourself, who would you want to make them for you? This can then lead into a discussion of whether the patient has spoken to that person about his/her preferences, and if so, what was the content of that conversation. Another useful question is, Is there any state that would be worse than death for you? This question focuses on outcomes and allows the physician to put the issue of resuscitation into perspective for a patient.

Knowing the Facts about Cardiopulmonary Resuscitation

In general, about 1 in 7 patients who have undergone CPR in the hospital survive to hospital discharge. Two literature reviews, from 1989 and 1998, of hospitalized patients who underwent CPR in the hospital reported surprisingly similar statistics. Immediate survival in both series was 41%, and survival to hospital discharge was 13%‐14%. Factors that increased survival included arrest due to coronary artery disease or drug overdose/adverse reaction, and location of arrest in the intensive care unit (ICU). Factors that decreased survival included sepsis at time of arrest, cancer, whether localized or metastatic, dementia, acute renal failure, bed‐bound status, and residence in a nursing home. Neither age nor sex was associated with survival.47, 48 In a meta‐analysis of outcome studies of CPR in metastatic cancer patients, none of 117 patients survived to hospital discharge.49

Most people get their information about CPR survival rates from the mass media, which portray CPR as a very successful procedure. For instance, on television, the sole source of information on CPR for most patients, the rate of survival to hospital discharge is 64%, much higher than the 1314% cited in the medical literature.50 Thus, it is no surprise that a patient with metastatic cancer or another life‐limiting illness would assume a positive outcome with CPR.

Knowledge of the facts about CPR survival rates is key when a physician discusses code status with a patient because these data influence patients' decisions. Patients who have a realistic understanding of their chances are less likely to prefer resuscitation.51, 52 Offering patients information about the success rate for CPR in their particular situation is critical in helping them reach a decision consistent with their values and goals. This information can be given quantitatively or qualitatively depending on the clinician assessment of what the patient would prefer.

Avoiding Stark Dichotomies in Resuscitation Discussions

In clinical practice there are 3 ways in which physicians can present resuscitation decisions as black and white and ignore the shades of gray. First, clinicians may present the choice between resuscitation and do not resuscitate (DNR) as a choice between life and death. In the first scenario above, the physician states If your heart were to stop, do you want us to do everything to bring you back? implying he would be able to save the patient's life with resuscitation attempts. When discussing resuscitation, clinicians should avoid language that suggests such a stark dichotomy. The reality is that most patients die despite resuscitation attempts. In fact, a patient is actually choosing between certain death (without resuscitation) and likely death (if resuscitation is attempted). For a patient with a serious, life‐limiting illness, it may be more effective to frame the conversation in terms of how that person envisions the end of life, and not whether death will eventually occur.

Second, clinicians and patients sometimes equate DNR with doing nothing or giving up. Clinicians fail to discuss other treatment options or alternatives, such as continuing ongoing aggressive medical treatments with DNR status or pursuing palliative care. Performing resuscitation is equated with activity and treatment, whereas withholding resuscitation is seen as passivity and giving up. To the patient, this can feel like abandonment, as if the doctor is withholding a treatment and not offering anything in its place. Examples of positive phrases that demonstrate the physician will continue to offer excellent care include: We will continue maximal medical therapy. However, if you die despite these treatments, we will let you die peacefully and won't attempt to revive you; We'll continue the intravenous antibiotics, but we won't plan to move you to the ICU if things worsen53; and We will work hard to treat your pain and other symptoms and to get you home. In addition, hospitalists must ensure, when signing out to physician colleagues, nurses, respiratory therapists, and others, that DNR orders are not overinterpreted to mean no treatment. Although a DNR order states that in the event of a cardiac arrest, no attempt at resuscitation will be made, it should have no bearing on other appropriate and desired interventions, including antibiotics, chemotherapy, and artificial nutrition; treatment for pain and other symptoms; and even monitoring in an ICU. This misunderstanding of DNR status is common among health care providers and has led many to argue that DNR orders should be part of a more comprehensive treatment plan that outlines where the patient's wishes for treatment fall on the spectrum from otherwise aggressive measures to comfort care.54, 55 Physicians who have a clear understanding of a DNR order will be able to reassure a patient that they will continue to receive desired care, but that if the patient dies, no attempt to resuscitate will be made.

Third, it is important to remind patients who choose full resuscitation status that additional decisions will need to be made if resuscitation is successful. Most patients who survive cardiopulmonary arrest end up worse off clinically and spend time in an ICU with life‐support measures in place, such as mechanical ventilation and vasopressors. Even if they survive, there will likely be a period during which they are unable to speak for themselves. This situation puts the burden of decision making on their surrogates or an appointed durable power of attorney for health care (DPOA‐HC). It is important to ask patients ahead of time whether there are conditions under which they would not want ongoing life‐sustaining measures. For example, a person might opt for discontinuation of life‐support measures if the physician and family agreed that there was only a minimal chance of cognitive recovery existed and that ongoing support was only prolonging inevitable death. To clarify the patient's wishes in this situation, you might ask, Are there conditions that would be worse than death? Encouraging the patient to share his/her wishes in this situation with a surrogate or DPOA‐HC will help to ensure those wishes are respected.

Communication Techniques

When discussing advance directives, it is important to give patients the chance to describe their life goals and their values to establish a context for understanding the role of life‐sustaining treatments. One useful method to elicit these goals and values is to ask open‐ended questions, followed by periods of silence so the patient has time to express himself/herself. In the second scenario, above, the physician used open‐ended questions in several instances: Tell me what you understand about your illness and As you look ahead, what worries you most? Tulsky and colleagues documented that medical residents spoke 76% of the time in discussions with patients about code status.30 In an ideal case, this ratio should be reversed or at least be even, allowing patients the time to explain their thoughts. Acknowledging patients' emotions by stating simply, You seem [angry/sad/perplexed], and waiting for an answer can help patients feel they are being understood. Making empathic statements is another powerful communication technique that conveys understanding.56 Examples include, That must be really sad for you, and It must be frightening to be in so much pain. As noted, silence can also be a powerful tool. Clinicians tend to be uncomfortable with silence and so fill the gaps with words. Allowing for silence enables patients to digest what they have heard, encourages them to continue speaking, and shows them the clinician wants to hear what they have to say. When giving information about any medical issues and especially about CPR, it is important to explain concepts in lay terms and to avoid medical jargon.57 Additionally, nonverbal communication techniques such as making eye contact, head nodding, and leaning in toward the patient all help in communicating engagement in the conversation. Having the conversation in a quiet and private place and sitting at the same level as the patient or family is also important. It is always a good idea to check in with patients to assess their understanding. Simply asking, Do you have any questions about what I said? or Does that all make sense? gives patients the opportunity to ask for clarification. Attempting to summarize what a patient has said can also help to clarify misunderstandings. Useful phrases include, Let me see if I've gotten this right or I want to make sure that I understood what you're telling me, followed by the clinician's synopsis of important points discussed.58 A summary of important communication techniques can be found in Table 2.

There are 2 additional statements that can be very useful when patients and families are struggling with the reality of severe illness and are still hoping for longer life and cure. The first is the I wish statement, in which the clinician allies himself or herself with the patient's or family's wishes by stating, I wish it were different. I wish there were more chemotherapy we could give you that would make a difference.59 Occasionally, when tension is developing because the clinician does not believe an intervention is warranted but the patient desires it nonetheless, the I wish statement can be a powerful way of realigning with the patient. For example, responding to a patient who says, I want chemo to cure my cancer, with the statement There is no chemotherapy to help you can seem antagonistic. In contrast, saying, I wish there were a treatment that would make your cancer go away aligns the clinician with the patient and supports the patient. Another advantage of I wish statements is that they are truethe clinician does wish that there was an effective treatment and would gladly provide it if available. In general, I wish statements are more effective than I'm sorry statements, because the latter can be interpreted as the clinician taking responsibility for the situation. When a provider says, I'm sorry to give you this bad news, the patient may feel the need to say, That's OK. On the other hand, saying, I'm so sorry that your mother is dying, is very human and unlikely to be interpreted as the clinician taking responsibility for the death.

A similar technique is to use the statement Hope for the best, prepare for the worst when speaking with patients and families.60 For example, a physician could say, I really wish your mother could get better, and we should still hope for that; at the same time, we need to prepare for what will happen if she doesn't get better. Once again, this phrase both allows the patient or family to continue hoping things will improve and the clinician to support this hope, while simultaneously beginning the process of planning for the more likely outcome. Over time, the patient and family often move toward accepting that the patient is dying. Finally, trying to help the patient or family maintain hope in the face of illness and death is challenging but important: If your mother can't get better, are there other things you can hope for? Helping to identify tangible and realistic goals, such as being free from pain, seeing an important family member one last time, or getting home can provide hope at a difficult time.

Giving a Recommendation

Most patients with serious illness and their families want help making complex and ethically charged decisions. When clinicians ask patients to make decisions unilaterally, patients often feel anxious, sometimes for weeks.61 Families are often paralyzed when faced with the very difficult decision of whether to withdraw life‐sustaining interventions from a family member with an advanced terminal illness. Even if they understand on an intellectual level that ceasing to provide potentially curative or life‐prolonging therapies is the best choice, they are not yet able to accept this decision on an emotional level and ultimately may feel responsible and then guilty for the patient's death. Physicians need to carry some of the burden of making these difficult decisions. One way to relieve family members of some of this guilt is to recommend a plan of care based on substituted judgment, that is, on what the patient said she or he wanted or what the family thinks the patient would have wanted.6264 In addition, clinicians should use their medical expertise, experience, and understanding of the situation to make recommendations. The patient or family can then accept or reject the physician's advice, which maintains patient autonomy, yet not have to explicitly instruct the clinician to withdraw or limit life‐sustaining interventions.

The preceding discussion and recommendations can guide scenarios like those presented at the beginning of this article. In the second conversation, the clinician had just told the patient that he could help her to achieve her goal of pain control and of returning and staying home.