Patient–Clinician Communication about End-of-Life Care Topics: Is Anyone Talking to Patients with Chronic Obstructive Pulmonary Disease?

Abstract

Background:

Reports describe patient and health care system benefits when clinicians engage in end-of-life conversations with patients diagnosed with life-limiting illnesses, yet most clinicians focus on life-preserving treatments and avoid conversations about end-of-life care. We describe patient–clinician communication practices about end-of-life care in patients with chronic obstructive pulmonary disease (COPD) using self-report questionnaires to: (1) characterize the content of patient-clinician communication about end-of-life care from the patient perspective, including topics that were not addressed and ratings of the quality of the communication for topics discussed and (2) determine whether clinician characteristics was associated with the absence of specific communication items addressed.

Methods:

Cross-sectional study of outpatients (n = 376) who completed the Quality of Communication (QOC) questionnaire (outcome measure). The primary exposure was clinician training. We used logistic regression. All tests were two-tailed and p < 0.05 was considered significant.

Results:

Clinicians (n = 92) were staff physicians (33.7%), physician trainees (35.9%), and advanced practice nurses (30.4%). Patients were older (mean age, 69.4 years, standard deviation [SD] 10.0); white (86%) men (97%) with severe COPD (mean forced expiraory volume in 1 second [FEV₁] percent predicted 50%, SD 20). All end-of-life topics were underaddressed. Four topics were not addressed 77%–94% of the time. None of the QOC items varied significantly by clinician type in adjusted logistic regression.

Conclusions:

All end-of-life communication topics were underaddressed by clinicians, regardless of training, with four topics particularly unlikely to be discussed. End-of-life topics that are important to patients should be targeted for an intervention to facilitate improvement in clinicians' communication skills and practice and may improve patient satisfaction with clinician communication.

Introduction

Recent reports describe both patient and health care system benefits when clinicians engage in end-of-life conversations with patients diagnosed with life-limiting illnesses.^1–5 Yet current research suggests that clinicians often elect to focus on life-preserving treatments and avoid conversations about patients' preferences for end-of-life care.^3,6 In 2005, the Agency for Health and Research Quality (AHRQ) and the National Institutes of Health (NIH) identified enhancing communication about end-of-life care an important area of research to improve delivery of desired and effective care.⁷ Although research progress is being made, implementation of the findings has been slow.

One plausible explanation posits that physicians lack training and self-efficacy in communication skills that would enable them to engage in these important conversations. Clinicians also hold on to beliefs that these conversations may take away their patient's hope or that these conversations will lead to anxiety or fear.^1,8 They may also be unsure of their ability to recognize and address the patient's underlying emotional state when facing end-of-life care decisions.^9,10 Lastly, many clinicians do not know when to initiate conversations about end-of-life care. This may be particularly challenging when treating patients with chronic diseases such as chronic obstructive pulmonary disease (COPD), when it is difficult to prognosticate for individual patients.^11,12 However, even in terminally ill patients with cancer with less than 1 year to live, clinicians do not follow guidelines for discussing advance care planning.⁸ Thus, interventions designed to improve clinicians' end-of-life care communication skills, as well as health care system initiatives, may be necessary to ensure that end-of-life care issues are addressed in timely, systematic, and empathic ways.

We sought to describe patient–clinician communication practices about end-of-life care in an outpatient setting of patients with COPD using self-report questionnaires. The study's specific goals were: (1) to characterize patient–clinician communication about end-of-life care from the patient perspective, including which topics were addressed and which were not and their ratings of the quality of communication about those topics and 2) to determine which clinician characteristics (training, practice location, gender, length of clinician–patient relationship) were associated with specific end-of-life communication items being addressed or not addressed.

Methods

Design

We examined baseline data collected from a single-blind clustered randomized trial of clinicians and their patients that was designed to improve the quality of clinicians' communication regarding planning for end-of-life care for patients diagnosed with COPD.¹³ The unit of randomization was at the clinician level with patients clustered by provider. Patients' preferences for communication and experiences at the end of life, and ratings of their clinicians' end-of-life communication skills were assessed using interviewer-administered questionnaires that were completed within 2 weeks of a target clinical visit. The study protocol was approved by the Institutional Review Board at the VA Medical Center Puget Sound Health Care System, approval #01378 and the University of Washington, approval #24803 (Seattle, WA) and informed consent was obtained from all subjects prior to data collection.

Study subjects

Clinicians and their patients with COPD were enrolled at the Veterans Affairs Puget Sound Health Care System from January 2004 to November 2007. Clinicians included advanced practice nurses (nurse practitioners, clinical nurse specialists, physician assistants) and physicians from primary care, geriatrics, and pulmonary clinics. Physicians included staff clinicians and physicians-in-training. Potentially eligible patients were identified by participating clinicians by reviewing information contained in their health records that suggested the presence of COPD including medication treatments, spirometry values or previous diagnoses of COPD. All patients were required to have spirometric confirmation of airflow obstruction as defined by the Global Initiative for Chronic Obstructive Pulmonary Disease (GOLD)¹⁴ criteria and to identify a participating clinician as the individual responsible for taking care of their lung disease. Patients were excluded from participation if their clinician determined that cognitive dysfunction, language barriers or severe psychiatric disorders would make it difficult for them to complete study activities.

We contacted patients by telephone to explain the study's goals, procedures, and to assess their willingness to participate. Study staff subsequently performed an in-person interview at either the VA Puget Sound Health Care System or at the participant's residence to confirm their willingness to participate, provide informed consent, and administer study questionnaires.

Measures

Primary outcome

Patients completed the previously validated QOC questionnaire end-of-life subscale. Patients were instructed to answer the questions in reference to the clinician who was primarily responsible for managing their lung disease. The QOC end-of-life subscale consists of seven items and is scored on a scale of 0–10 with 10 indicating higher quality communication (Table 1). In addition to using the 0–10 scale, patients are able to indicate whether a clinician “didn't do” a particular communication task or if they “don't know” how to rate a particular communication task.¹⁵

Table 1.

Quality of Communication End-of-Life Questions

1. Involving you in decisions about the treatments that you want if you get too sick to speak for yourself

2. Talking to you about how long you might have to live

3. Asking about your spiritual or religious beliefs

4. Talking to you about what dying might be like

5. Talking with you about your feelings concerning the possibility that you may get sicker

6. Talking with you about the details concerning the possibility that you might get sicker

7. Asking about the things in life that are important to you

Scoring for each item was done by dividing the QOC item rating into three categories, based on how the patient rated the question if it was discussed at all: (1) not discussed; (2) discussed poorly to fairly well (ratings between 0–7); and (3) discussed well (ratings between 8–10). The latter two categories were based on predetermined cut points and definitions. If the patient did not make any selection, or selected a “don't know” option, the item was considered missing.

Predictors/covariates

Clinician characteristics were collected from self-report, and clinic reports and included: clinician type in three groups (advanced practice nurses, staff physicians, physician trainees); length of relationship with patient divided into three groups (0 to <2 years, 2–5 years, >5 years), clinic type in two groups (pulmonary, primary care including geriatrics) and clinician gender.

Analysis

Frequencies and percentages for each of the seven items without adjustments were calculated. In order to assess the associations between clinician characteristics and topics addressed, patient ratings on each item were dichotomized as “discussed” (ratings from 0–10) or “not discussed” (ratings “clinician did not do this”). We used logistic regression modeling, clustered by clinician in order to accommodate correlated data. Initially only the primary predictor variable (clinician type) was entered into the model with each QOC item as the outcome. The other predictors were then added en bloc. Next, we explored whether addressing each end-of-life topic was associated with the overall clinicians' communication rating. We ran linear regression models, as robust and clustered by clinician to correct for correlated and non-normally distributed data, with each end-of-life item as the primary exposure, including the previously defined covariates and the overall communication rating as the outcome. All tests were two-tailed and a p value < 0.05 was considered significant. Stata® software, version 11.0 (StataCorp, College Station, TX) was used for all statistical analyses.

Results

Patient and provider characteristics

We invited (n = 204) clinicians to participate in the study, 152 agreed of whom 92 (61%) contributed at least one patient to the study. Clinicians were staff clinicians (33.7%), physician trainees (35.9%) and advanced practice nurses (30.4%). Of the 92 clinicians, 66.3% practiced in the general internal medicine clinics, 26.1% in the pulmonary clinic and 7.6% in the geriatric clinics. 42 clinicians were randomized to the intervention and contributed 194 patients and 50 clinicians were randomized to the control group and contributed 182 patients, for a total of 376 eligible patients. The patient cohort was comprised of mostly older (mean age, 69.4 years, SD 10.0), white (86%) men (97%) with severe COPD (mean FEV₁ percent predicted 50%, SD 20) (14). Provider and patient characteristics are presented in Table 2.

Table 2.

Clinician and Patient Characteristics

Provider characteristic (n = 92)	N (%)
Gender (Female)	46 (54.1)
Race/Ethnicity
Caucasian	64 (75.3)
Other	21 (24.7)
Provider Types
Advanced practice nurses	28 (30.4)
Staff MD	31 (33.7)
MD trainee	33 (35.9)
Provider Clinics
Primary care	61 (66.3)
Pulmonary	24 (26.1)
Geriatric	7 (7.6)
Patient characteristics (n = 376)	N (%)
Age (years)	69.4 ± 10 SD
Gender (Male)	365 (97.1)
Marital Status	n = 342
Married	163 (47.6)
Race	n = 338
White	291 (86.1)
Black	22 (6.5)
Other	25 (7.4)
Education	n = 344
≤ High school	142 (41.3)
Smoking Status	n = 342
Current	93 (27.2)
Former	237 (69.3)
COPD Severity	n = 339
FEV₁ (% predicted)	50.4 ± 20.3

COPD, Chronic obstructive pulmonary disease; FEV₁, forced expiratory volume in 1 second (postbronchodilator); SD, standard deviation.

The quality of end-of-life communication

Table 3 shows the percentage of clinicians who did not address each end-of-life topic, those who discussed each topic poorly to fairly well (ratings between 0–7) as rated by patients; those who discussed each topic well (ratings between 8–10) as rated by patients; and the combined totals for the addressed topics. Overall, clinicians under-addressed all seven end-of-life topics with their patients with 4 of the items being discussed less than 25% of the time and the remaining 3 items discussed 40% of the time. Topics that were discussed less than 25% of the time included: talking about how long patients might live; talking about what dying may be like; involving the patient in future treatment decisions, and asking about spiritual/religious beliefs. Despite most clinicians not addressing these topics, of those that addressed these questions three were rated by patients as addressed well (8–10) as compared to poor to fair (0–7); talking about how long patients might live (n = 39/52, 75%), involving the patient in future treatment decisions (n = 65/79, 82%), and asking about spiritual/religious beliefs (n = 24/38, 63%). However, when the question talking about what dying may be like was addressed, it was rated as poor to fair (n = 14/21, 67%).

Table 3.

Patients' Ratings of the Frequency and Quality of Clinicians' Communication on End-of-Life Topics

		Clinician did not address		Clinician addressed poor-fair (scores 0–7)		Clinician addressed well (scores 8–10)		Clinician addressed totals
Questions	Total #	N	%	N	%	N	%	N	%
1. Involving you in decisions about the treatments that you want if you get too sick to speak for yourself	346	267	77.2	14	4	65	18.8	79	22.8
2. Talking to you about how long you might have to live	355	303	85.3	13	3.7	39	11	52	14.7
3. Asking about your spiritual or religious beliefs	359	321	89.4	14	3.9	24	6.7	38	10.6
4. Talking to you about what dying might be like	359	338	94.1	14	3.9	7	2	21	5.9
5. Talking with you about your feelings concerning the possibility that you may get sicker	351	205	58.4	26	7.4	120	34.2	146	41.6
6. Talking with you about the details concerning the possibility that you might get sicker	349	212	60.7	22	6.3	115	33	137	39.3
7. Asking about the things in life that are important to you	354	215	60.7	27	7.6	112	31.7	139	39.3

The results of our analysis exploring whether clinicians' addressed or did not address a specific end-of-life topic and the association with the overall clinicians' communication rating had one significant finding. Our results show that among clinicians that ask patients about things in life that are important to them, there was a 0.40 increase in the overall satisfaction of communication rating, as compared to those clinicians who did not ask this question (p = 0.02).

In unadjusted models, we examined if the clinician type (primary exposure) was associated with topics that were addressed. Results showed that only a single item—asking about the things in life that are important to you—varied significantly; staff physicians were less likely than advanced practice nurses (OR 0.58, confidence interval [CI] 95% 0.37–0.92; p = 0.02) to discuss this with patients. However, in the model adjusted for clinic type, clinician sex, and length of patient–clinician relationship, this association was no longer significant (Table 4). One additional item—involving you in decisions about the treatments that you want if you get too sick to speak for yourself—was addressed significantly more often by clinicians that had a relationship greater than 5 years with the patient, compared to those who had a relationship of 0 to less than 2 years (OR 2.61, CI 95% 1.24–5.52; p = 0.01).

Table 4.

Quality of Communication End-of-Life Questions Logistic Regression Model: Clinician Type (Primary Predictor)

	Odds ratio (95% CI)
Ref: Advanced practice nurses	Staff MDs	MD trainees
1. Involving you in decisions about the treatments that you want if you get too sick to speak for yourself	1.20 (0.60–2.37)	1.22 (0.48–3.08)
2. Talking to you about how long you might have to live	1.73 (0.77–3.87)	1.81 (0.65–5.11)
3. Asking about your spiritual or religious beliefs	0.65 (0.30–1.42)	1.14 (0.35–3.68)
4. Talking to you about what dying might be like	1.37 (0.36–5.25)	0.52 (0.06–4.28)
5. Talking with you about your feelings concerning the possibility that you may get sicker	0.90 (0.53–1.50)	0.79 (0.39–1.64)
6. Talking with you about the details concerning the possibility that you might get sicker	1.21 (0.75–1.94)	1.41 (0.71–2.83)
7. Asking about the things in life that are important to you	0.66 (0.35–1.25)	0.90 (0.42–1.92)

Ref, reference category; CI, confidence Interval.

Adjusted for clinic type, clinician gender, length of patient–clinician relationship.

Discussion

This study of specific end-of-life topics addressed by clinicians of patients with COPD illuminates several important issues. First, although all end-of-life communication topics that we assessed were consistently underaddressed, some aspects were particularly unlikely to be discussed. These topics included talking about how long patients might live; talking about what dying may be like; involving patient in future treatment discussions; and asking about spiritual/religious beliefs. Clinicians discussed these items with less than a quarter of their patients. When clinicians addressed these items, patients generally rated the quality of the communication as high suggesting that patients see their physicians as skilled in addressing these topics. Additionally we found when clinicians asked patients what was important to them in life, their overall communication ratings increased.

Although talking about these difficult topics and in particular plans for dying is challenging, having discussions specifically about this process may provide opportunities to reinforce available symptom management approaches. Furthermore, the occurrence of these discussions are associated with higher quality health status and of dying and death.^1,2

Our finding that both items related to dying (i.e., talking about how long patients might live; talking about what dying may be like) were under addressed is consistent with findings from other studies.^15–18 The study describing the development of the quality of life questionnaire similarly identified these items as not addressed by clinicians caring for patients with COPD as compared to those caring for patients receiving hospice care. Clinicians may avoid these topics due to the uncertain prognostication in the trajectory of COPD as compared to cancer.¹¹ Studies have identified predictors for risk of dying of respiratory failure within one year including FEV₁ less than 30% predicted, declining functional status and dependency for daily activities, more than one urgent hospitalization within the past year, co-morbidities and older age.^19–21 These indicators may serve as a prompt for clinicians to initiate end-of-life conversations however it is important to keep in mind that these discussions should occur on a regular basis to address patient treatment preferences that may change as the disease progresses. Although it may be difficult for clinicians to discuss aspects of the dying experience, studies confirm that most patients with COPD want to have these conversations.^22–25 Developing an intervention that focuses on these specific sensitive topics and the appropriate time to address these issues with patients may improve patient satisfaction with clinicians' care.

The topics related to involving patients in future treatment discussions and asking about spiritual/religious beliefs have also been identified as important to patients and may enhance end-of-life decision making.^26,27 Tulsky and colleagues²⁸ found that even when physicians engaged in discussions with patients about advance directives, patients' values and attitudes toward treatment uncertainty were rarely addressed. This approach may hinder rather than facilitate future decision making. Addressing patients' spiritual or religious practices is a topic that many clinicians are reluctant to approach because of feeling ill-prepared or not wanting to offend patients' beliefs.²⁹ However, several studies demonstrate that patients would like to discuss their spirituality or religious beliefs with their physicians, particularly when they are facing life-limiting illnesses.^27,30 Over the past decade, many medical schools have developed courses in spirituality assessment and communication which may help better prepare the future generation of clinicians to address these topics.^31,32 For practicing clinicians, educational interventions that incorporate methods on ways to discuss how spiritual and religious issues may impact patients' end-of-life treatment decisions may result in enhanced end-of-life care discussions and planning.

We also found the length of the patient–clinician relationship influenced the clinicians' discussion of one end-of-life topic. Clinicians that have a relationship for more than 5 years with a patient are more apt to initiate a conversation involving the patient in decisions about treatments if they get too sick to speak for themselves. Although not surprising, this finding that clinicians are more likely to have advance care planning conversations with patients with whom they have had longer relationships highlights the importance of continuity of care to quality end-of-life care.

Although our models did not show differences among clinician type, it is possible that training differences between nursing and medicine may influence how clinicians' approach end-of-life topics with patients. Nursing models teach a holistic approach to assessing and treating the person, which may account for asking about the patient's life beyond the context of the medical encounter. This approach can be useful to elicit patients' values and what constitutes their quality of life, two important perspectives in discussing end-of-life care preferences. A similar finding was recently report in a systematic review of patient-physician end-of-life care discussions where physicians focused on the medical/technical issues and avoided the emotional/quality of life issues.⁹ Regardless of some reported differences in clinician attention to communication issues, our findings suggest that all clinicians would benefit from interventions to improve end-of-life communication skills, regardless of their educational training.

This study has two strengths. First, we measured patient-rated clinicians' communication skills as it relates to end-of-life care issues. Second, the communication instrument we used for this study, quality of end-of-life communication (QOC), is a validated research instrument and has been used in other studies with patients with COPD. The QOC questionnaire incorporates the premises of patient-centered communication and measure specific communication attributes, in order to better guide clinician behaviors and focus future interventions.

There are potential limitations to our study. First, the outpatients cared for within the Department of Veterans Affair facility are mainly older, white men. Second, this study was a cross-sectional design, thus accounting for a one time evaluation of clinicians' end-of-life communication skills. This design limits our ability to make causal inferences related to patients' prior exposure to end-of-life conversations with their clinicians. There may be unmeasured patient-clinician biases not accounted for. Lastly, we may not have measured other clinician characteristics that are relevant to differentiating between the types of clinicians.

In conclusion, our study found that the clinicians of patients with COPD being cared for in outpatient settings failed to discuss many issues related to end-of-life care and preparation. This finding warrants further investigation in order to understand and remedy this reluctance so that these topics may be practically introduced during patient visits. End-of-life topics that are underaddressed yet important to patients with COPD should be targets for an intervention to facilitate change in clinicians' communication skills and practice. Clinicians who are able to engage in patient-valued end-of-life conversations support a patient-driven model of care based on patient preferences.³³ Providing care in concordance with patients' end-of-life preferences promotes patient autonomy and improves patient and family satisfaction with care.^34–36 Delivering high-quality care includes discussions of end-of-life care and is desired by patients. Greater emphasis is needed on having these discussions be the performed by all clinicians working with patients with chronic, life-limiting illnesses.

Footnotes

Acknowledgments

Funded by Health Services Research and Development, Department of Veterans Affairs. IIR 02-292.

This material is based upon work supported by the Department of Veterans Affairs, Veterans Health Administration, Office of Research and Development and Health Services Research and Development.

The views expressed in this article are those of the authors and do not necessarily represent the views of the Department of Veterans Affairs.

Dr. Slatore is a recipient of a VA HSRD Career Development Award and is supported by resources from the Portland VA Medical Center.

Author Disclosure Statement

No competing financial interests exist.

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