Older Patients’ Perspectives on Quality of Serious Illness Care in Primary Care

Abstract

Background:

Despite increased focus on measuring and improving quality of serious illness care, there has been little emphasis on the primary care context or incorporation of the patient perspective.

Objective:

To explore older patients’ perspectives on the quality of serious illness care in primary care.

Design:

Qualitative interview study.

Participants:

Twenty patients aged 60 or older who were at risk for or living with serious illness and who had participated in the clinic’s quality improvement initiative.

Methods:

We used a semistructured, open-ended guide focusing on how older patients perceived quality of serious illness care, particularly in primary care. We transcribed interviews verbatim and inductively identified codes. We identified emergent themes using a thematic and constant comparative method.

Results:

We identified 5 key themes: (1) the importance of patient-centered communication, (2) coordination of care, (3) the shared decision-making process, (4) clinician competence, and (5) access to care. Communication was an overarching theme that facilitated coordination of care between patients and their clinicians, empowered patients for shared decision-making, related to clinicians’ perceived competence, and enabled access to primary and specialty care. Although access to care is not traditionally considered an aspect of quality, patients considered this integral to the quality of care they received. Patients perceived serious illness care as a key aspect of quality in primary care.

Conclusions:

Efforts to improve quality measurement and implementation of quality improvement initiatives in serious illness care should consider these aspects of care that patients deem important, particularly communication as an overarching priority.

Introduction

The proportion of older Americans has been increasing dramatically and is projected to increase further in the next decade, representing 21% of the total population by 2030. Older Americans are also living longer but are either at risk for or living with serious illness.¹ Serious illness reflects an illness in which patients may not be cured, recover, or stabilize, and may be related to multiple chronic conditions.² Although palliative care interventions can be effective in improving patient outcomes,³ they are often not focused on older populations. Healthcare systems must adapt to provide high-quality care for older patients who are either at risk for or living with serious illness.

Key elements that should be included in this care are addressed by the palliative care approach to serious illness care, defined as patient- and family-centered care that focuses on care planning and quality of life by anticipating, preventing, and addressing needs across the continuum of care.⁴ Health professional guidance for palliative care addresses domains of physical, emotional, social, and spiritual needs and facilitates communication and decision-making about serious illness and goals.^5–7

Primary care is an increasingly important setting for providing care to older patients with and at risk for serious illness and is a key for coordinating care between services, assisting in healthcare decision-making, and referring to specialty palliative care clinicians or other relevant clinicians. Therefore, improving the quality of care in primary care for these domains is a priority but has generally not been well integrated in this setting.

Although there has been an increasing emphasis on guidelines, quality measurement, and improvement for serious illness (often with a goal of achieving patient-centered care),^5,7–14 the perspective of patients with serious illness is rarely included in the development of such initiatives. Little research has evaluated the patient perspective on quality of serious illness care in the context of primary care. Patients may have different priorities than clinicians for what contributes to quality of care and how it may impact their health outcomes. Understanding older patients’ perspectives may help prioritize quality improvement initiatives and improve serious illness care delivery in primary care. Further, the experiences of older patients who are involved in a quality improvement initiative in this area may help improve the acceptability and effectiveness of these initiatives and their integration into care.

In this qualitative study, we explored older patients’ perspectives on the quality of serious illness care in the primary care context. We considered how older patients identify and describe aspects of quality of care and how they prioritize these aspects based on their perception of importance to quality of care.

Methods

We conducted a qualitative interview study in an academic suburban primary care clinic to gain a deeper understanding about the perspectives of older patients involved in an advance care planning (ACP) quality improvement initiative on the quality of serious illness care. Our goal was to allow patients to express their views and reflect upon their own personal experiences and experiences with their family members. From June through August 2016, we conducted interviews with 20 patients aged 60 or older included in the clinic’s ACP quality improvement initiative, which included all older patients at the clinic. This initiative included mailing information about ACP and an advance directive form to patients, followed by a clinician reminder to discuss ACP at the visit.¹⁵ We used the clinic database to identify patients enrolled in the ACP quality initiative who were able to speak English and willing to participate in a 30- to 60-minute interview. The patient’s primary care clinician introduced the study to the patient using a standard script at the end of the clinic visit. One of the research team members then consented the patient and discussed the purpose of the study, risks and benefits of being in the study, how data will be protected and stored, option of withdrawing, and disclosure of protected health information for research right before the interview took place. This study was approved by the Johns Hopkins Bloomberg School of Public Health institutional review board.

The research team conducted one-time, in-person, semistructured interviews using an open-ended interview guide, developed based on systematic reviews of patient satisfaction and quality improvement in palliative care,^16,17 the NCP Clinical Practice Guidelines for Quality Palliative Care domains,⁵ and input from 2 patient advocates who were involved in the quality of palliative care. Two research team members were present in most interviews. We used a semistructured approach to ensure that information was consistently collected from all patients but allow flexibility for the important items to our patients to emerge. We also used probing questions to elicit more detail and to seek clarity and confirmation of patients’ responses. The interview guide (see Online Appendix) contained questions around different aspects of care and how these aspects may have contributed to the quality of care, particularly in primary care. After the first 3 interviews, the research team reviewed the interview guide individually and then convened to discuss adjustments, which included rewording and clarifying questions identified as confusing by patients. In particular, while the interview guide initially focused on quality in serious illness care, most patients were not familiar with the terminology of serious illness care; thus, the interviewers began with a more familiar and generalized term “quality of care” and then probed for serious illness care. All interviews were audiotaped and transcribed verbatim.

We inductively identified codes and used thematic analysis alongside a constant comparative methodology to iteratively refine emergent themes into a finalized coding scheme. The first author (N.A.) drafted the initial coding scheme and revised it following the initial 3 interviews, incorporating research team feedback. Transcripts were coded using MAXQDA 12 software for qualitative data analysis, Berlin, Germany.¹⁸ Data including audio recordings, transcripts, and analyzed data were stored on a secure server protected by limited access and strong password systems. Once study recruitment and transcription was complete, personal identifiers and recordings were destroyed.

We analyzed each interview individually and compared each interview with others for emergent themes around the area of quality of care within the primary care context. When patients participated in discussions about ACP, patients raised different issues specifically about future illness, which is not within the scope of this analysis and is analyzed separately.¹⁹ To ensure rigor in our qualitative methodology, we carefully reviewed interviews and field notes, revised the coding system as needed, conducted regular debriefs with the research team, and assessed intercoder agreement and analyst triangulation.^20,21 Two independent coders (N.A. and S.R.I.) analyzed 20% of all transcripts independently and then resolved discrepancies by discussion and consensus between the coders and other research team members. The full research team, with expertise in palliative and serious illness care, qualitative research, and gerontology, participated in analysis of the data to confirm representativeness. In the analyses presented here, we prioritized presented themes based on how patients factored them into quality and based on the patients’ perceived importance for quality of care. We also focused on what patients consistently reported as contributing to quality and how these emergent themes integrated with each other.

Results

Our sample had a mean age of 70.6 years, was 65% female and 25% African American, and had multiple chronic and serious health conditions (Table 1). Five key themes emerged from our analyses highlighting older patients’ perspectives about quality of serious illness care in primary care: (1) the importance of patient-centered communication was the overarching theme, prioritized by all patients and intersecting with all other themes; (2) the importance of coordination of care, meaning that patients and clinicians needed to collaborate and that clinicians from different specialties had to integrate patient care; (3) the importance of the shared decision-making process as an interactive process, with particular factors highlighted as contributing to quality decision-making; (4) the importance of clinician competence, including clinical and interpersonal skills, as integral to achieving quality of care; and (5) the importance of access to care, including access to medical insurance and clinicians, considered to be an essential factor for quality. We present illustrative quotations from each theme in Table 2.

Table 1.

Patient Demographics.

N = 20	Mean (SD) or n (%)
Age at time of interview	70.6 (7.5)
Sex
Male	7 (35)
Female	13 (65)
Race
African American	5 (25)
White	15 (75)
Self-reported health condition
Bone disease (arthritis, osteoporosis, gout)	5 (25)
Cancer (breast, lung, bladder, carotid body)	4 (20)
Hypertension	4 (20)
Diabetes mellitus	2 (10)
Hyperlipidemia (high cholesterol)	2 (10)
Depression or bipolar disorder	2 (10)
Connective tissue disorder	2 (10)
Other (thyroid disease, prostate disease, asthma, sleep apnea)	3 (15)
Number of chronic conditionsa
0	5 (25)
1	9 (45)
2	4 (20)
>2	2 (15)

^aBone disease, cancer, hypertension, diabetes mellitus, hyperlipidemia, hypertension, depression or bipolar, connective tissue disorder, and asthma.

Table 2.

Themes Describing Patients’ Perspectives on Quality of Serious Illness Care and Sample Quotations.

Theme	Subtheme	Quotation
1. Communication	Content and style	They [clinicians] tell you what your treatment’s going to be and a lot of times they don’t really explain the whole thing to you. I think once they tell you “you have something,” they should tell you more about it; the options for treating it and the dangers … [Female, depression] Interviewer: In your own words, what is quality of care? [Male, hypertension]: It’s whether or not the person feels that the doctor is really listening to them.
	Timing	She [clinician], said “Well, you got to get that immediately fixed. You got to get that really taken care of.” There are some here that really take this seriously and she scares you straight, so I’m thankful for help like that because that’s exactly when you need it—to get you to the right people, to get it done quickly … and to get it taken care of. [Female, connective tissue disorder]
2. Coordination of care		So I think there is just no coordination of care. Everybody’s in a silo … with no communication and how can you get the best health care if all disciplines don’t communicate? … that’s been one of the biggest frustrations for me. [Female, diabetes mellitus]
3. Shared decision-making process		She [clinician] asks penetrating questions, but she’s not aggressive “You have to do this, you have to do that.” We talk about things. So it’s a consensus … an understanding. [Female, none reported] I like to know. I like to be educated. I’m not a doctor and I want you to educate me about the situation and let me make a decision based on the information that I have. [Female, depression]
4. Clinician competence	Knowledge and skills	I think as a patient I feel better knowing that my doctors and the other staff are well informed … to give me the best care possible. [Female, breast cancer] She’s [clinician] very intelligent. She’s very up to date … So she looks at all the different angles for someone my age. I feel like she takes a lot of things into consideration before she asks a question or orders a test. [Male, bladder cancer]
	Approach to care	Quality of care also means that there’s a very human side to things. That I’m not just looking into the eyes of a doctor who’s looking at me as just another number and part of your check at the end of the month. I feel I’m looked at as a human being … That’s just as important as the knowledge. [Male, bladder cancer] Good quality for me is the person [clinician] shows that they care that I’m not just a patient that she has to wait on. I’m a patient that she’s really concerned about … [Male, lung cancer]
5. Access		So I am familiar with what’s going on out there with respect to individuals who do not have healthcare coverage and how it affects them and how in many instances it destroys their lives because they don’t have the ability to get preventative care or they don’t have the ability to get care for chronic illnesses like diabetes. [Female, none reported] To come up here is a bit of a drive, but it’s worth it for her [clinician]. [Male, sleep apnea]

The Importance of Patient-Centered Communication

Patient-centered communication was the predominant theme to emerge across interviews in what patients perceived as the most important contributor to quality of care and how they perceived communication as contributing to quality. Patients described communication as how clinicians and patients exchanged information within the context of a relationship underlining content and style of communication with regard to timing. Patient-centered communication was reflected in other themes, particularly in coordinating care between patients and their clinicians, empowering patients for shared decision-making, related to clinicians’ perceived competence, and enabling access to primary care and specialty clinicians.

Content and style of communication.

Patients presented content and style of communication as interconnected concepts. Patients appreciated discussions with their clinicians when provided detailed explanation about their diagnoses, relevance of workup and treatment, and presentation of treatment options focusing on patient preference. Further, patients valued discussions about the impact of illness or treatment on quality of life including daily activities. Emotional and spiritual needs were not at the center of patient and clinician discussions, and patients did not emphasize the importance of these issues as part of quality care. Generally, patients described preferring discussions that are transparent, direct, and honest, especially in the context of complexities surrounding older age and serious conditions. Listening to patients and translating their concerns to medical actions emerged as an important aspect of communication, improving the quality of care.

Timing of communication.

Patients also emphasized the importance of timely communication with their primary care clinicians—particularly regarding laboratory test results and inquiries about their health. Patients who were enrolled in the clinic’s online portal are able to access laboratory information and communicate with their primary care clinician. Patients perceived that having access to the clinic’s online portal facilitated the timeliness of care.

The Importance of Coordination of Care

Patients described coordination of care in different ways and at varied levels. In particular, differences emerged around clinicians’ “collaboration” with patients and integration of care delivery services. Different specialties and healthcare systems were key ways patients described care coordination. Patients further believed that their primary care clinician had a central role in coordinating their care including referrals to specialty clinicians, and they saw care coordination between primary care clinicians and specialty clinicians as being at the heart of quality integrated care. The quality of care coordination was viewed as strongly related to patient-centered communication, improving clinician collaboration with patients. Patients described integration of care as meaning that both primary and specialty clinicians had to be informed about each other’s involvement in patients’ care and share the same goals for their patient.

The Importance of the Shared Decision-Making Process

The concept of “shared decision-making” was perceived as either a current or future treatment decision the patient would make in collaboration with their clinician and potentially with their family members. Patients viewed decision-making as an interactive process and expressed a desire for their voice to be incorporated when decisions are being made about their health.

For current treatment decisions, patients expressed their views on factors influencing quality decision-making including presentation of treatment options by clinicians, necessity of having different treatment options to choose from, and patient treatment preferences. Patients also emphasized the importance of being informed and educated about their care by their clinician, which extends on the theme of patient-centered communication. When clinicians educated their patients about their care, patients were more informed about making health decisions and coping with the responsibilities of their care. Patients expressed appreciation for instances when their clinicians supplied them with brochures or trusted web sites about health or health services and commented on their usefulness. Although not common in all clinical settings, patients valued a patient education center where patients can access educational material such as books and videos and a computer laboratory where they can print out clinicians’ notes and treatment plans, which empowered patients to make good healthcare decisions.

The Importance of Clinician Competence

Patients presented several aspects of a clinician’s technical and interpersonal competence as integral to achieving quality care. Two subthemes emerged on this point: clinicians’ use of knowledge and technical skills and clinicians’ approach to care including comprehensiveness of care and compassion.

Knowledge and skills.

Patients perceived clinician competence as meaning that the individual has a good knowledge base about serious illnesses and older patients. Moreover, this knowledge would be reflected in disease management and clinicians’ ability to tailor treatments according to patients’ needs. Patients expressed feeling more comfortable and confident in their clinicians when they were receptive to learning new information about their illness and care. The quality of technical skills, whether it was prescribing medications or conducting physical examinations, reflected clinician knowledge and expertise. Clinicians’ level of knowledge and skills impacted the way clinicians communicated with their patients.

Approach to care.

Patients described a clinician’s approach to care as an important aspect of competence for clinicians dealing with older patients who were likely to face more challenges compared with younger patients. Patients emphasized the value of clinicians focusing on the patient as a whole person, and this comprehensive approach to care was particularly important for patients with rare or complex disease. Clinician compassion was an important aspect of quality of care and was part of clinicians’ approach to care. Showing signs of care such as listening, respect, humility, and timely response to patients’ needs reflected the nature of compassion. Patients favored clinicians who they perceived to be compassionate and saw that clinician compassion facilitated patient-centered communication.

Importance of Access to Care

Patients described having access to care as being an important component of quality of care, including medical insurance and access to clinicians. Patients’ medical insurance impacted quality of care in terms of access to specialty clinicians, medication, and preventative care. Access to primary care clinicians was challenging for most patients as was access to nonurgent appointments, and access to specialty clinicians was difficult for those with rare and complex diseases. Although patients preferred convenience of care, proximity and location of the clinical setting were seen as being worth sacrificing if necessary for attaining high-quality care.

Discussion

Our study reveals 5 key themes that patients presented as contributing to the quality of care for serious illness care in the context of primary care. The overarching theme “the importance of patient-centered communication” was highlighted in all patient interviews and was associated with all of the other emergent themes. From patients’ experiences, care coordination and shared decision-making between patients and clinicians were facilitated by patient-centered communication. A knowledgeable, skillful, and compassionate clinician with an insightful approach to older adults’ care was seen as imperative to obtaining quality care and improved communication. Although access to medical insurance and clinicians is not traditionally considered an aspect of quality, patients considered it to be integral to the quality of care they received.

When comparing patients’ views with expert opinions such as the National Consensus Project Clinical Practice Guidelines for Quality Palliative Care, there were some differences between these currently used quality care domains and the patient perspective from this study.⁵ In our study, patients valued patient-centered care that is reliant on communication, coordination of care, and shared decision-making, whereas pain and symptom management, spiritual, and cultural needs were not expressed by patients as important aspects of quality of serious illness care. The discrepancy between expert and patients’ views suggests a need to integrate the patient perspective into assessing the quality of serious illness care to ensure patient-centered care can be achieved.

Our research builds on the work of others who explored the patient perspective on quality of serious illness care, but these studies have focused on specialty palliative care settings rather than primary care and included the views of other stakeholders including families in addition to patients’ views.^22–25 The terms palliative care and end-of-life care quality were used in these studies instead of “serious illness care,” which is a more recent term used to define care for seriously ill patients and their families with the goal of aligning care with patient preferences and goals of care. In our study, older patients discussed the importance of patient-centered communication highlighting content and style of communication and timely communication of health changes. Our results suggest a relationship between communication and all other themes. This extends on the study of Nelson et al where focus groups including patients and their families in the intensive care unit were conducted. Participants valued open and compassionate communication, which was closely associated with how care is integrated across specialties and influenced patients’ decision-making process.²³ Further, our findings of care coordination, clinician competence, and access to care were viewed by patients as contributing to quality of care, replicating the finding of Shafir et al where homebound patients enrolled in an academic home-based primary care program and their caregivers noted they valued when primary care clinicians coordinated care with specialty clinicians and when clinicians’ knowledge and skills translated to disease management; however, they also acknowledged the issue of limited access to specialty care.²² The congruence of our themes with these studies conducted in different settings validates the perspectives of patients on serious illness care quality regardless of where care is received and extends our understanding of what is valued by these patients.

However, other studies that have investigated the patient perspective on quality of serious illness care in specialty palliative care settings have proposed themes illustrating pain and symptom management, burden relief, and care for the dying person.^24,25 Although pain and symptom management and care for the dying person represent important domains of palliative care quality, those themes did not emerge from our patients’ perspectives. This discrepancy may suggest that our patients have different health needs and a different conceptualization of quality care, or that the setting influences perceptions of quality of care.

Of note, various studies have explored patients’ views on what is important in serious illness care rather than the quality of serious illness care.²⁶ We argue that these 2 concepts are different in meaning yet may overlap in some aspects where patients’ perception of importance of care may be closely related to how patients conceptualize quality of care. In a meta-synthesis by Virdun et al of 16 qualitative studies that focused on presenting the most important aspects of end-of-life care in hospital settings, identified by different stakeholders including patients, 7 themes were reflective of patient perceptions.²⁶ Among those 7, themes that were similar to our patients perspective of quality of serious illness care included integrated care across different clinicians as part of expert care, effective communication including the need for clear and adequate information to support shared decision-making, and respectful and compassionate care. We believe that patients’ perception of importance of care helps shape patients’ perceptions of quality of care. Other synthesized themes in Virdun’s study included symptom management, having an adequate environment for care, and maintenance of sense of identity as important to patients in the hospital setting, where patients may have higher burdens of disease. In our study, where most patients were at risk for serious illness, patients did not reveal these themes as contributing to quality of care, which suggests where the concepts of importance and quality may diverge.²⁶

In our study, older patients viewed the quality of serious illness care as inseparable from overall quality of care provided in a primary care setting. We suggest that quality of serious illness care and the way it is measured can be further improved in the primary care setting. Patient-centered communication should be prioritized given its extent of importance to patients and its association with other aspects of quality that patients described. Care coordination and access to care should be incorporated into quality measures of serious illness care to achieve patient centeredness.

Our study has both strengths and limitations. We used in-depth, open-ended, and semistructured interviews to elicit patient perspectives, and we were able to obtain qualitatively rich data reflecting patients’ interactions with the healthcare system. Throughout our study, we followed recommended strategies for methodological rigor such as using multiple coders and assessing agreement.^20,21 However, there were also several limitations. Although our patients were recruited from a single primary clinic, we asked them to discuss their general experiences with care, which would encompass more than this single clinic. Because our patients were enrolled in the clinic’s quality improvement initiative, they may have been more aware about the concept of quality of care than patients who are not enrolled. Although our sample included patients who did not yet have serious illness, most of these older patients had experiences related to serious illness care with family members, which they were able to reflect on in the interviews. Patients who did not agree to participate in an interview might have had different experiences from those who shared their perspectives. We also did not include views of patients who were not English speakers or those of different races other than whites and African Americans, who might have had different cultural considerations impacting their views about quality of care.

Accurately measuring and understanding the quality of serious illness care require incorporating the patient perspective into constructing and refining quality measures and implementation of quality improvement initiatives. Our qualitative findings identified 5 key themes related to serious illness care quality from older patients’ perspectives: communication, as an overarching theme, as well as coordination of care, shared decision-making, clinician competence, and access. These themes demonstrate the essence of patient-centeredness, as patients perceive it. Primary care practices could use patient-reported themes from this study to prioritize their quality improvement initiatives focusing on aspects of communication, coordination, and decision-making. Further research should incorporate this patient-centered approach into quality measurement and improvement initiatives to evaluate their impact in primary care.