Abstract
Objective To investigate the feasibility of using the Patient Dignity Question (PDQ) in a small rural hospice setting.
Design Prospective study.
Setting The 5-bed Algonquin Grace Hospice in Huntsville, Ont.
Participants Nineteen patients who met the research criteria and who were admitted to the hospice from September 2015 to December 2016.
Methods Participants completed the Patient Dignity Inventory and modified versions of the Edmonton Symptom Assessment Scale and Integrated Palliative Care Outcome Scale before and after the PDQ interviews.
Main findings While each of the 19 PDQ interviews was unique, there were many consistencies regarding accomplishments (eg, being a good parent), hopes (eg, one’s need of being respected), and fears (eg, concerns about pets) that emerged from participants’ stories. Hospice staff found the documents from PDQ interviews to be very valuable in their understanding of patients. Staff and patients unanimously wanted the program to continue. An unexpected benefit was the response of the patients’ families who were deeply moved by the legacy documents, often sharing them following their family member’s death.
Conclusion The PDQ is a dignity-conserving intervention that serves as a meaningful end-of-life legacy document that benefits patients, staff, and families. Using the PDQ at the hospice helped patients feel truly heard, and increased caregivers’ compassion and understanding of patients’ needs.
The belief that one may persist, not in one’s individual personhood, but through values and actions that ripple on and on through generations to come can be a powerful consolation to anyone anxious about his or her mortality.
Irvin D. Yalom1
The importance of retaining dignity in the face of a life-limiting illness and impending death has been a focus of study and research for several decades.2–4 From their work on the influencers of dignity in palliative patients, Dr Harvey Max Chochinov, Director of the Manitoba Palliative Care Research Unit of CancerCare Manitoba in Winnipeg,5,6 and his team developed a dignity-conserving model of care7 as a succinct way of thinking about, and addressing, the issue of dignity conservation.
Briefly, the dignity-conserving model identifies 3 main categories of factors that affect an individual’s sense of dignity: how the specific illness itself affects the patient’s sense of dignity; how the patient’s own perspectives and practices influence his or her sense of dignity; and the positive or negative effects of interactions with others on a patient’s sense of dignity.
Research stemming from this model led Chochinov and his team to devise a number of practical tools and therapeutic interventions to assist health care providers to better enhance a patient’s sense of dignity. One of these tools is the Patient Dignity Inventory (PDI), available at CFPlus,* which consists of 24 questions about the most common factors that influence a person’s sense of dignity and provides a “moment in time” look at what most affects the patient currently.8,9 The PDI questions are scored on a Likert scale from 1 (not a problem) to 5 (an overwhelming problem). The answers can help identify areas of distress related to loss of dignity leading to a deeper exploration of issues specific to each patient. The PDI is a unique measure in that it includes not only the physical realm, but also the psychosocial, spiritual, and existential ones. The tool has been found to have clinician and patient acceptance in a variety of settings, as well as in cancer and noncancer populations.8,10
More recently, Chochinov and his team developed a tool called the Patient Dignity Question (PDQ),11 a brief intervention that can be easily applied in any health care setting.12 It consists of asking only 1 question: “What do I need to know about you as a person to give you the best care possible?” By asking this single question, and from the discussion that follows, one can elucidate the individual’s more hidden and, as of yet, unexpressed desires and fears, allowing the provider to more effectively tailor care to the individual’s needs. Equally important is enhancing the patient’s sense of personhood—in other words, patients become aware about what makes them unique and learn to understand that they are not merely defined by their illness. Giving patients an opportunity to express how their illness affects them allows the health care providers a deeper understanding of that individual’s unique needs. The written document resulting from this intervention might serve as a legacy to be left behind for loved ones, thereby providing a meaningful “last gift.”
The PDQ was first trialed in a large urban centre by Dr Chochinov’s team. Because of its inherent simplicity, as well as the capacity to enhance our care including fostering greater dignity, our group was interested in trialing the PDQ in our small centre. The goal was to investigate the feasibility and potential effects of using the PDQ in a small residential hospice in a rural setting with limited resources of time and personnel.
METHODS
Setting
Algonquin Grace Hospice is a 5-bed residential hospice that supports the rural northern community of Huntsville, Ont, with a population of 19 800,13 and the surrounding areas. Most of the admissions are local patients who are expected to die within 3 months.
Study design
Patient inclusion protocol.
All the patients were inpatients at Algonquin Grace Hospice. The facility uses the Palliative Performance Scale to measure 5 observer-rated parameters: ambulation; activity and evidence of disease; self-care; intake; and level of consciousness. Patients who met the following criteria were invited to participate: scored 30% or higher on the Palliative Performance Scale14; were able to read and write English; and were not delirious or otherwise cognitively impaired.
The study period was from September 2015 until December 2016. Nineteen individuals participated. The study recruiter, who was not otherwise involved in the care of the patients, approached those who met the inclusion criteria with a prepared script, introducing them to the goals of the study as well as providing written information. Once written and informed consent was acquired, the recruiter administered the PDI and modified versions of the Edmonton Symptom Assessment Scale (ESAS)15 and the Integrated Palliative Care Outcome Scale (IPOS).16 These measures were only used in this study to assess changes following the intervention. Within a day or 2, the investigators met with each patient and asked the PDQ, asked other clarifying questions, and answered patient queries. From the written notes, the results were typed up and then read to the patient, allowing for subsequent editing. Then, again with permission, this document was put in the patient file for the staff to read, and copies were given to the patient to distribute as he or she wished. Within another few days, the recruiter again administered the same 3 questionnaires with 1 additional question that asked patients how completing the PDQ affected them. The results of the questionnaires were anonymized.
Staff participant protocol.
Following the completion of the PDQ interviews, staff members (consisting of registered nurses and personal support workers) were invited to anonymously respond to a health care provider feedback questionnaire, which was a modification of the questionnaire used in a study by Chochinov et al that evaluated the influence of the PDQ on health care providers.17 At Algonquin Grace Hospice, each 8-hour shift is staffed by a registered nurse and a personal support worker.
The protocol was approved by the Research Ethics Board at Laurentian University.
FINDINGS
The care of the sick unfolds in stories.
Columbia Narrative Medicine18
Over the course of this study, there were 131 admissions to the hospice. Of these patients, 34 met the inclusion criteria and were approached to participate in the study. Six patients declined to participate owing to either lack of interest or feeling too ill. One individual consented, but his son objected, and he was excluded from the study. There were 8 patients who began the study (doing the 3 pre-PDQ questionnaires [PDI, ESAS, and IPOS] and the PDQ) but deteriorated before doing the 3 questionnaires again after the PDQ interview. Nineteen individuals (11 women and 8 men) completed the whole process.
Most of the patients (17 of 19) who completed the study were admitted with terminal cancer (brain, lung, hematologic, bowel, pancreas, prostate, ovarian, liver, laryngeal, melanoma, breast, and renal); 1 was admitted with terminal chronic obstructive lung disease and 1 with frailty.
Themes that emerged from the PDI
From participants’ PDI results, any response with a score of 3 or higher was considered an area of concern to be explored further by the investigators and staff. In our study sample, the areas of greatest distress were dependency issues: the inability to carry out tasks associated with daily living (eg, getting dressed, washing) and not being able to attend to bodily functions (eg, needing toilet-related assistance). Fourteen of 19 (74%) participants scored this as a problem (score of 3) or a major problem (score of 4). Nine patients identified the changes in how they looked to others as a problem, which is in the category of existential distress. In the area of symptom distress, 8 patients indicated feeling uncertain about their health and worrying about the future as substantial (major or overwhelming) problems and 7 respondents identified not being able to carry out usual routines as a problem. Less than 25% of participants found factors such as physically distressing symptoms, anxiety, depression, lack of peace of mind, and lack of social supports as a problem or major problem. These findings closely match other studies on dignity-related distress at end of life.19–21
An attempt was made to address each area of concern for each patient (eg, reviewing nursing interventions, medications for symptom control, and psychosocial supports).
Themes that emerged from the PDQ
While each of the 19 PDQ interviews was unique, there were many consistencies regarding accomplishments, hopes, and fears that emerged from participants’ stories. Tables 1 and 2 present various themes and participant revelations that emerged during the PDQ interviews.
Themes that were most commonly discussed by participants who completed the PDQ interview:N = 19.
Revelations from participants during the PDQ discussions
Themes that emerged from staff feedback
Although staff members did not administer the PDQ interviews, they had access to the completed documents in the patient files. As patients’ primary caregivers during their stay at Hospice, staff members are in a unique position to comment on the effects of the PDQ on patients and their care. One staff member’s statement summed this up:
I think they [PDQ interviews] give a voice to the resident. For some the diagnosis has been very sudden—for others, it’s death by degrees. Regardless, this opportunity to put pen to paper, so to speak, allows the resident to describe themselves, not in terms of illness, but in terms of life.
In response to the question about what they learned that was new information or what affected them emotionally, staff members identified areas concerning patients’ family backgrounds, past experiences, deaths, spouses, and families. They believed this information enhanced their ability to create a deeper therapeutic relationship with the client and increased their compassion and understanding. Staff members were also able to have a more in-depth understanding of certain behaviour patterns and traits. They could identify patients who “didn’t want a fuss to be made,” as they gained insight on how these patients approached their life and impending death.
In addition, staff not only learned the patients’ likes and dislikes (eg, food choices, opinions on being touched, sociability qualities, philosophic ideas), but also the reason behind certain behaviour patterns and mannerisms (eg, experience of childhood abuse). These insights enabled better relationships and a deeper perspective on the individual, and, in short, helped them be more in tune with the whole person. Staff knew which patients wanted more space and those who wanted more contact. Through this window, insight was also gleaned into family dynamics, which helped in maneuvering through the sometimes difficult family relationships, thereby being a source of nonintrusive support.
Reading the PDQ interviews was also found to improve compassion among staff: the knowledge of what others have faced in their lives generated an empathic response that increased levels of compassion among several staff members. Levels of respect were not changed: all staff were committed to giving all patients respect regardless of any other factor, because of their commitment to hospice palliative care and inherent human duty to others. Compassion and empathy were also seen as “a given,” although these were easier to achieve knowing the patients’ stories and having that connection with them.
Being a witness to the PDQ stories gave staff a great deal of personal satisfaction. It was often their first opportunity to know their patients as the people they were before their illness, to see them outside the clinical frame. The PDQ became an unexpected tool allowing provision of more individualized end-of-life care. The perception among staff members of the PDQ being important for themselves and for the patients is reflected in these 2 comments.
I would like to see the PDQs continued. The brief look inside one’s life can have a profound effect on one’s end of life.
I feel they are important, not only for staff to establish, maintain, [and] expand the caregiver relationship, but also give the person a chance to reflect on their life in a constructive way.
Although this study did not aim to formally seek out the opinions of family members, we did receive much informal feedback. Several families told us they read the PDQ document out at the funeral or framed it to be on display at the visitation.
DISCUSSION
A whole is that which has beginning, middle and end.
Aristotle
Over the past decades, medical care has evolved from disease-oriented care (where the disease is central), to patient-oriented care (which puts the patient at the centre), to person-centred care (which considers the needs of the person within the patient role), and now to whole-person care.21–24 This latter approach means seeing the patient as a person in the context of his or her culture, family, and community system.5 Listening to the patient’s story is an important place to begin to adequately achieve this goal.
The PDQ is a dignity-conserving intervention that serves as a meaningful end-of-life legacy document that benefits the patients, staff, family, and loved ones. It can highlight patients’ concerns, as well as their hopes, fears, and dreams, allowing caregivers a deeper understanding of the individual and enhancing end-of-life care. It gives patients a voice and opportunity to speak about topics that are deeply important to them and that they might have not have spoken about before. Staff who share in this knowledge gain a framework within which they can individualize the care to that patient. And the patient’s family and loved ones have a document to remember the patient’s poignant last days.
Administering the PDQ took approximately 1 hour: 30 minutes for interviewing, 15 minutes for transcribing, and 15 minutes for sharing with patients and making any alterations. Although useful information was gleaned from the PDI and the ESAS and IPOS scores, very ill patients found them tiring, and these measures will not be included in the future.
Being able to administer the PDQ on admission would increase the yield of patients well enough to participate.
Although our study required the investigators to administer the PDQ, it can be administered by general staff members from a variety of disciplines (nursing, medicine, social work, pastoral care) or volunteers who are trained in interviewing techniques.24 This would enable a wider use of this tool, especially in settings with limited staffing resources. The nursing staff at the hospice expressed interest in using this tool. Volunteers are already integrated at the hospice and readily accepted by families and patients.
Limitations
This study involved a small sample size over a short period of time, and the patients knew the purpose of the intervention before participation. The participants were all very ill and close to death, which might have influenced their responses. Almost all of the participants had previously been under the care of the local palliative care team before admission, and it is possible many of their concerns had already been addressed.
Conclusion and future directions
This study found that the use of the PDQ in a small hospice centre provided residents with an opportunity for their voice to be heard and staff members with invaluable knowledge about patients that helped them in their care approach. Hospice staff and patients unanimously wanted the program to continue. Training interested staff and selected volunteers to administer the PDQ would improve general accessibility to this meaningful intervention.24 Also, including family members during PDQ interviews would enable patients who are unable to answer for themselves to participate, and add a deeper dimension to the final product. A future study will be designed to survey families, asking them about how the PDQ affected them following their loved one’s stay at the Algonquin Grace Hospice. In addition, both the PDI and the PDQ would be useful adjuncts to palliative patients from the entry point into our palliative care services. Repeating these from time to time throughout the course of a patient’s illness could serve to highlight shifting areas of concern.
Acknowledgments
This study was funded by the Huntsville Local Education Group. I thank Bryn Milner, who was a social worker for the Hope Huntsville Palliative Care team at the time of the study, for her contribution to the original concept of the study, as well as sharing the interviewing tasks. I gratefully acknowledge the contributions of the recruiter, Ms Joanne Osborne. I thank Ms Snehal Watharkar for her assistance at the start of the study, and Dr Lisa Allen who provided expert advice and assistance in completing the study and preparing the manuscript. I also thank Dr Harvey Max Chochinov and his team for generously sharing their questionnaires and research protocols. Above all, I extend my deep appreciation to the patients and their families who shared their stories with such grace. It has been a privilege to have known them.
Notes
Editor’s key points
▸ The Patient Dignity Question (PDQ) is a tool that can be applied in any heath care setting. It consists of asking only 1 question: “What do I need to know about you as a person to give you the best care possible?” By asking patients this single question, and from the discussion that follows, one can elucidate the patient’s needs and concerns, allowing providers to more effectively tailor their approach to the patient’s care.
▸ The Algonquin Grace Hospice in Huntsville, Ont, was interested in trialing the PDQ in its small centre. During the PDQ interviews, patients’ stories revealed much about their accomplishments, hopes, and fears. Staff had access to the PDQ interview documents, from which they gained deeper knowledge about the patient (eg, family dynamics, behaviour patterns, likes and dislikes); these insights enabled better relationships and helped staff members be more in tune with the whole person.
▸ The written document resulting from the PDQ intervention might also serve as a meaningful “last gift” to be left behind for loved ones.
Points de repère du rédacteur
▸ La Question sur la dignité du patient (QDP) est un outil qui peut servir dans tout établissement de santé. Il ne compte qu’une seule question : « Que dois-je savoir à propos de vous en tant que personne pour que je puisse vous donner les meilleurs soins possible? » En posant cette seule question, et à partir de la discussion qui s’ensuit, il est possible de clarifier les besoins et les inquiétudes du patient, ce qui permet aux soignants d’adapter plus efficacement leur approche quant aux soins à prodiguer à ce patient.
▸ La maison de soins palliatifs Algonquin Grace Hospice à Huntsville (Ontario) souhaitait mettre à l’essai la QDP dans son petit centre de soins palliatifs. Durant les entrevues au moyen de la QDP, les histoires des patients en ont révélé beaucoup à propos de leurs réalisations, de leurs espoirs et de leurs craintes. Le personnel avait accès aux documents sur les entrevues réalisées avec la QDP, ce qui leur permettait de mieux connaître le patient (p. ex. dynamiques familiales, habitudes comportementales, ce qu’il aime et déteste); ces renseignements ont facilité les relations et ont aidé le personnel à être davantage au diapason de la personne toute entière.
▸ Le document écrit tiré de l’intervention réalisée avec la QDP peut aussi servir de précieux « dernier cadeau » à laisser aux personnes chères.
Footnotes
↵* The Patient Dignity Inventory is available at www.cfp.ca. Go to the full text of the article online and click on the CFPlus tab.
Competing interests
None declared
This article has been peer reviewed.
Cet article a fait l’objet d’une révision par des pairs.
- Copyright© the College of Family Physicians of Canada
References
In this issue
Jump to section
Related Articles
Cited By...
- No citing articles found.