Abstract
Abstract
Background:
The Patient Dignity Question (PDQ) is a single question, which directly asks the patient, “What should I know about you as a person to help me take the best care of you that I can?” Research has demonstrated that the PDQ enhances quality health care within an inpatient palliative care setting; however, no research to date has examined the PDQ in an outpatient setting, particularly a psycho-oncology setting.
Objective:
The PDQ was administered as part of routine clinical care in an outpatient psycho-oncology clinic to enhance patient-centered care.
Methods:
Individuals diagnosed with cancer (n = 66) were referred for individual psychotherapy primarily for anxiety and/or depression. After gathering a thorough patient history during the initial psychology consult, patients were asked the PDQ as it was worded without further prompting. Patient responses were then qualitatively analyzed to measure the most common themes.
Results:
The themes expressed by patients in response to the PDQ included Who I Am (59.7%), which referenced individual characteristics and core personality traits, What My Cancer Journey Has Been (21.7%) described how patients' lives have been impacted since receiving a cancer diagnosis, and What I Want to Achieve (18.4%) in which patients described what goals they wanted to achieve in their lives (both general and specific to psychotherapy).
Conclusions:
Data from this small pilot study show promise that this brief assessment tool can be readily added to a psychological intake assessment and patients appreciated being asked about their personhood. Incorporating the PDQ into standard psychological care allows patients to be “seen” and helps us to acknowledge the person in the patient.
Introduction
There is growing interest in providing effective patient-centered care in today's complex health care environment. 1 Providing patient-centered care is a multifaceted process, often with the promotion of dignity and personhood at its core.2,3 Understanding cancer patients as people, fostering a sense of dignity, and aiming to understand patients' psychological needs and sources of suffering are paramount, and may ultimately diminish the occurrence of inappropriate or unwarranted health care interventions. 4 Increasing a sense of dignity in health care can begin with improved communication, particularly by understanding the narratives of patients' unique illness-related concerns and social aspects.4–7
One emerging tool for enhanced health care communication is the Patient Dignity Question (PDQ). 8 The PDQ is a single question that directly asks the patient, “What should I know about you as a person to help me take the best care of you that I can?” Each patient's response to the PDQ is written and summarized (typically in the form of one to three paragraphs). This summary is read back to the patient to ensure accuracy and, once approved, patients are asked whether they would like to have the written summary placed in their medical chart for other health care providers to review.
To date, the largest study conducted involving the PDQ included 66 hospitalized palliative care patients (87% diagnosed with cancer), 60 family members, and 137 associated health care providers. 8 Results showed that 93% of patients and families believed the information elicited from the PDQ was important for their health care providers to know, 97% desired for the information to be included in their medical chart, and 99% recommended the process for others. Among the health care providers, 90% reported learning something new from the patients' PDQ responses, and 44% stated it influenced subsequent care. As a result, the authors noted that the PDQ “offers a brief and effective way to help clinicians place personhood on their radar, thereby enhancing quality humane health care.” 8
Johnston et al. 9 similarly found hospitalized palliative care patients' perceptions of the overall climate of care to be more positive after being asked the PDQ, with 100% of patients requesting that the completed PDQ be placed in their medical chart and 93% recommending the PDQ for others. Although these findings are promising, further research is needed to broaden an understanding of how the PDQ may positively benefit other patient populations.8,9 Specifically, how might the PDQ benefit outpatient populations? Could the PDQ offer insights regarding outpatients' needs, preferences, and goals of care? Finally, could the PDQ help inform the creation of personally tailored biopsychosocial and spiritual interventions? This study begins to address these questions by analyzing the PDQ responses from people with cancer receiving outpatient psychological services.
Methods
This study was completed at University of California, San Diego Moores Cancer Center within the Department of Patient & Family Support Services, which offers psychiatry and psychology services to patients affected by cancer. The study involved a retrospective medical record review of data regarding patient responses to the PDQ and received IRB approval from UC San Diego.
Participants
Participants were individuals diagnosed with cancer (n = 66) who were referred for individual psychotherapy between July 2015 and April 2016, primarily for symptoms of anxiety and/or depression (48.5% and 25.8%, respectively). The average age of patients was 52 years old (standard deviation = 14.14; range = 20–81) and 68.2% were female with a range of cancer diagnoses (as shown in Table 1). All patients were either undergoing cancer treatment or had completed treatment, including chemotherapy, radiation, and/or surgery at the time of study.
Patient Cancer Diagnoses (n = 68)
Two patients had more than one cancer diagnosis.
Procedure
Patients underwent an individual psychological intake evaluation, which was conducted by either a licensed clinical psychologist or a doctoral-level clinical psychology trainee. The initial evaluation took place over the course of one to two appointments to gather the patients' psychosocial history. During these interviews, patients were asked about their current psychiatric symptom presentation and their mental health treatment history. Additional information was gathered about their psychosocial history including substance use, work/education background, relationships/social support, and family/developmental history. If two appointments were required to gather all necessary psychosocial history, the PDQ was asked at the end of the consult before a discussion of the patient's expectations and goals for psychotherapy.
After gathering a thorough patient history, patients were then asked the PDQ: What should I know about you as a person to help me take the best care of you that I can? The PDQ was asked as it was worded without further prompting. Patients could have multiple responses to the PDQ. The evaluation concluded by discussing the patient's expectations and goals for psychotherapy. All clinician notes were handwritten at the time of the interview, then recorded in the patient's electronic medical records. Responses to the PDQ were not audio recorded given that this question was embedded into the standard psychological evaluation as our clinic's standard of care.
Analyses
Three of the study investigators were involved in analyzing patient responses to the PDQ (E.A.M., J.N., and C.C.). Study investigators (J.N., C.C., L.M.T., and J.X.) did not have access to additional patient information. Utilizing the method of Coding Consensus, Co-occurrence, and Comparison 10 two study investigators (J.N. and C.C.) independently reviewed all of the PDQ responses verbatim.
Sixty-six participants generated 179 responses to the PDQ. To code the data, two study investigators (J.N. and C.C.) randomly selected 25% of PDQ participant responses (n = 45) to identify common words and phrases that allowed for analyzable data units. All study investigators identified an initial set of 70 codes and through a discussion of consensus created a final coding matrix (n = 54). Next, using the final coding matrix, study investigators (J.N. and C.C.) independently coded all responses. Finally, a fourth investigator (J.X.) used the final coding matrix to independently code a random 25% subsample of the PDQ responses to test for inter-rater reliability, resulting in 82% agreement with the other investigators' (J.N. and C.C.) coding. We identified 3 overarching themes and 54 subthemes across the 3 categories based on thematic saliency. Please refer to Table 2. The frequency of each theme was then calculated, and certain quotations were selected to show salient themes.
Most Common Themes and Subthemes of Patient Dignity Question Responses
Results
Patient responses to the PDQ were found to include three overarching themes: who I am, what my cancer journey has been, and what I want to achieve.
Who I am
The largest proportion of patients' responses to the PDQ made reference to their individual characteristics and core personality traits (59.7%). These included either how the patients currently perceived themselves or how they viewed themselves before receiving their cancer diagnosis. The most common examples of characteristics described by patients included being family oriented, as well as being compassionate, honest, independent, and sensitive. Notably, patients often described how being independent or compassionate made it difficult for them to cope with cancer.
I feel so lost. I was strong spiritually and had personal growth, but I have kind of lost it.
My kids are the most important thing. I value education and raising mentally healthy kids.
I don't like to ask for help. I am independent, which makes it difficult to ask for help.
I am always putting others first, which has been a downfall.
What my cancer journey has been
Patients also described how their lives had been impacted since receiving a cancer diagnosis (21.7%). Most commonly, patients described how their cancer journey included physical bodily concerns and changes, fear, some positive growth, and a sense of being reluctant to attend more appointments at the cancer center and addressing personal concerns.
The time spent in a wheelchair was hard because I had to depend on others.
I don't want to die. I'm frustrated because I can't do anything about it. I'm extremely sensitive about feelings. I wish I had more friends or social contacts. I feel alone, lonely, and sad. I'm sick and tired of being sick and tired.
{I} see life differently since my cancer diagnosis and now every day is special.
I struggled with self-assertion before cancer; but that has improved since. I care less about what other people think.
{I am} sick of coming to Moores Cancer Center, but I have no other options.
What I want to achieve
Finally, patients also described what goals they wanted to achieve in their lives (18.4%). Some goals were general; others were specifically related to what could be achieved through psychotherapy. Particularly, patients often described wanting to return to who they felt they were before cancer. As a result, they commonly mentioned a desire to be emotionally stable, be connected to their family, and to live honestly.
I would like to be more independent and control my anxiety.
I am usually a happy person, but I get frustrated and especially miss being able to do things like grocery shopping and cleaning the house.
What can I do to solve the problem and cope? I hold on to things and have a hard time letting go.
Discussion
This is the first study to implement the PDQ in this type of outpatient psycho-oncology setting. The PDQ was originally intended as a prompt to elicit conversations about personhood to enhance communication between health care providers and patients. Our results show promise that this brief assessment tool can be easily incorporated into standard psychological consults in a conversational manner to enhance clinical care with a focus on personhood. Although we hope that we are regularly achieving this goal as psychologists and mental health clinicians, too often we fall prey to focusing exclusively on the psychiatric symptomology that brings these individuals to our offices rather than the person who also suffers from psychological distress.
In our retrospective study, we found that the PDQ elicited information related to personal characteristics and core values that are not often directly asked or elicited during the initial psychology consult. As a result we learned what was most important to our patients' sense of identity when providing clinical care, which allows for better management of the patient and patient-centered biopsychosocial and spiritual interventions.
Incorporating the PDQ into standard psychological care allows patients to be better “seen” and helps us acknowledge the person in the patient, not just the DSM-5 diagnostic criteria. It is imperative that we ask our patients who they are outside of their physical and/or mental illness or ailments, as each individual expresses unique values, desires, and needs throughout the cancer trajectory and in direct relation to their health care needs. Chochinov et al. 8 encourage providers to utilize the PDQ in addition to standard care to further guide conversations that aid in disclosing personal factors that may impact medical decision making, as well as place personhood on the “clinical radar” (p. 978) during any stage of care and treatment.
Future studies could investigate whether PDQ responses differ depending on the setting in which the PDQ is asked and by whom (oncologist, nurse, spiritual counselor, etc.). Individuals receiving psychotherapy services may be more inclined to discuss the impact of cancer on their sense of personhood given the nature of this clinical service.
Footnotes
Acknowledgments
The authors thank UC San Diego Moores Cancer Center, Patient and Family Support Services for the support of this study. We further acknowledge the additional support of Cindy Campos and Kimberley Schulz, MA, in assisting with the data collection and analysis for this article.
Funding Information
No funding was received for this study.
Author Disclosure Statement
No competing financial interests exist.
