The purpose of this study is to understand the patient perspective after diagnosis of an acute traumatic spinal cord injury (tSCI). Discussing the diagnosis and prognosis of a tSCI with a patient can be a challenging experience for both the patient and the physician. As such, this paper attempts to better understand the patient experience to improve communication when discussing this life-altering injury.
Vancouver General Hospital, Vancouver, British Columbia, Canada.
This study is a qualitative study utilizing grounded theory and semi-structured interviews. The interview transcripts were manually coded using manifest and latent content analysis. Major and minor codes were identified and discussed.
In total, 17 interviews were conducted, fifteen individuals with tSCI who received acute care at Vancouver General Hospital (VGH) and eleven family members were interviewed. Patient participants were interviewed individually or in a paired interview with a participating family member. Patient participants had varying spinal cord injuries from AIS A-D. Two major themes were identified from the interviews. The first major theme was physician demeanor (general approach and attitude towards patients) and the second major theme was delivery of information (content, timing, and source).
This study summarizes the preferences of patients who sustained a tSCI discussions regarding their diagnosis and prognosis in the acute care setting. The goal of this study is to help guide physician interactions at this difficult and vulnerable time for patients with hopes to improve patient care through effective communication.
The diagnosis and prognosis of a traumatic spinal cord injury (tSCI) is often initially difficult to fully comprehend and can be overwhelming in the acute care setting for patients and their families. It is typically the role of the spine surgeon (physician) to discuss the tSCI with patients and their families immediately following assessment of the injury. Despite being well trained in emergently decompressing the spinal cord and stabilizing the vertebral column, surgeons lack training in complex communication skills, such as delivering bad news . Barriers physicians often encounter during delivery of bad news include fear of patient’s and/or family’s reaction to the news, uncertainty of how to deal with the evoked emotional response, concern with patients losing hope, and inability to provide all of the answers [1,2,3].
These barriers in communication, combined with a lack of formal education to address the barriers, culminate in a daunting task for many physicians. Yet, despite the challenging nature of delivering bad news, the importance of communicating effectively and with compassion cannot be underestimated. The transfer of information from the physician to the patient and their families in regards to the tSCI has an impact on their ability to cope with their new diagnosis, their engagement with physiotherapy and rehabilitation, and may impact their overall short and long-term outcomes [4, 5].
Communicating prognosis in spinal cord injury patients from a physician’s perspective has been discussed in the literature yet there is a gap in understanding patient needs and their perspective on critical discussions regarding diagnosis and prognosis following a tSCI [6, 7].
From the oncology literature, it is clear that the manner in which prognosis is communicated with patients can affect patient comprehension, satisfaction with medical care, level of hopefulness, and subsequent psychological adjustment [8,9,10,11,12,13]. Therefore, effective communication between the physician and patient/family is of utmost importance.
The purpose of this study is to understand the patient and family perspective in receiving information on diagnosis and prognosis in the acute care setting after sustaining a tSCI. In this study, we hope to determine what specific aspect of communication and interactions are most important and beneficial to patients, thereby enhancing patient–physician relationships, and hopefully, positively impacting patient outcomes.
This was a qualitative study utilizing grounded theory [14, 15]. A research team composed of one spine surgery fellow (MN), one independent qualitative health researcher (VO), one clinical nurse specialist in tSCI (LB) and two researchers in tSCI (VN, LH), developed a semi-structured interview guide (Box 1). Open ended questions were utilized to allow for emergence of themes from participants, and other more directed questions were optional when participants required more prompting. The interviews elicited participants’ views on their experience in acute care after a tSCI.
Eligible participants were identified using the Rick Hansen Spinal Cord Injury Registry at the Vancouver General Hospital (VGH) site . Inclusion criteria for patient participation were age greater than 18 years, at minimum 6 months post injury and requiring an inpatient admission to VGH for tSCI with a neurological classification of American Spinal Injury Association Impairment Scale (AIS) A-D at the time of injury as per the International Standards for the Neurological Classification of SCI . In addition, patients were required to have an inpatient admission to a spinal cord injury rehabilitation hospital and currently be reintegrated into the community. Exclusion criteria for participants were physical or mental disabilities sustained prior to their tSCI that may have confounded their care in hospital, history of substance abuse, and patients who were unable to communicate fluently in English. Participant family members were also interviewed. Inclusion criteria for these participants were age greater than 18 years, the ability to communicate fluently in English, and having been present during the patient’s acute and rehabilitation care following their tSCI. The study was reviewed and received approval by both the university Clinical Research Ethics Board (CREB) and the hospital. Consent forms were obtained for all those participating in interviews.
Data collection and analysis
A spine surgery fellow (MN) and a qualitative health researcher (VO) independently conducted 17 in-person interviews. Interviews were recorded and transcribed verbatim. Field notes were taken to record emotional and non-verbal expressions. The two interviewers independently read and manually coded each transcript using manifest and latent content analysis, as well as constant comparative techniques [14, 15]. Initial coding labels for data chunks were noted in transcript margins. As recurring codes or themes were identified, they were clustered into increasingly specific groupings, and transcribed into an Excel spreadsheet with specific participant quotes. Tables of codes were created, with frequency counts of the coded transcript to confirm density of the identified codes. Descriptions of the identified codes and themes were clarified using highlighting of the most representative manifest content of a specific transcript, or with a direct quote from our Excel spreadsheet. Data on the study participants was obtained from the Vancouver Rick Hansen SCI Registry and included: age, gender, education status, marital status, neurology, function, and living situation. Criteria for rigor in qualitative studies (auditability, credibility, and fittingness) were fulfilled [18, 19].
Overall, 17 interviews (individual and/or paired) were performed. In total, 15 patients and 11 family members participated and consented for the interviews. Most patients were interviewed alongside their family member as described in the research protocol. In a few cases, paired interviews were not logistically possible and were done individually or without the participation of a family member. The average age of the patients at the time of injury was 42.6 years (age range of 17–77 years) and most patients were of male gender (87%). There was an equal number of complete and incomplete tSCI and 73% (11 of 15 patients) were non ambulatory. The interviews occurred between 1 and 2 years after the tSCI (13 of 15 interviews). Table 1 outlines the demographic information for the consenting patients (patient participants only).
Amidst some personal variability inpatient experiences, perceptions, and preferences, two main themes were identified: (1) Physician demeanor and (2) Delivery of information. Physician demeanor consisted of the general approach and attitude towards the patient. Delivery of information was divided into content, timing, and source of information. These two main themes were then further divided into minor codes that are described in detail below. Participants’ study numbers are attached to the quotations to highlight the contributions from each of the patients.
During communication with healthcare professionals (physicians, nurses, physiotherapists, occupational therapists, social workers, etc…), participants consistently voiced their appreciation for staff approaching them with a friendly demeanor. They valued interactions that consisted of positive energy and a sense of humor. Participants noted healthcare professionals’ pleasant attitude “makes [them] feel good” [participant #6], “gives [them] energy to fight and lightens the mood.” [wife of participant #15]. Other quotes consistent with this minor theme: “I used to laugh with the nurses and make jokes to make me feel happy and alive.” [participant #1], “I love how positive they were and they would come in laughing and smiling.” [participant #2]. Patients felt a sense of comfort when the healthcare providers tried to get to know them as individuals. Establishing a personal connection and a unique patient–physician bond, gave the patients a sense of familiarity, which they found invaluable after sustaining their tSCI.
Patients often mentioned the role of their physiotherapist and occupational therapist as an important one during the acute care period. They had daily visits with their therapist and developed personal relationships with them, which enhanced their trust in the healthcare system. After sustaining a tSCI, most patients had initial discussions in regard to diagnosis and prognosis with their surgeon; however, most participants referred to their therapists when describing in-depth conversations about their injury. Physiotherapists and occupational therapists played an important role for patients in answering their questions daily. When asked specifically if patients would rather have discussed questions with their surgeon, most patients were satisfied with this team approach and trusted their therapists to answer questions about their injury.
Although patients highlighted the importance of their positive relationship with their allied healthcare professionals, participants were appreciative of visits by their surgeon, and voiced disappointment when they were infrequent or non-existent. Furthermore, patients and their family members emphasized the significance of surgeons getting to know the individual patients. “[…] But they have to remember that each person that comes there is a different person. And they have to individualize it and I know it must be difficult, but they’ve got to do it because […] [patients] are not machines. They’re not just stats. They’re absolutely alive people.” [family member of participant #7].
Maintaining patient dignity
Another important aspect of the patient experience is being treated respectfully and as a human being as opposed to as a disabled patient. Participants wholeheartedly appreciated healthcare professionals who treated them like they would any other person and in the same manner they were prior to their accident. This helped improve patients’ self-image and made them feel like themselves again.
One participant expressed this when talking about his nurses in acute care: “[…] I was all messed up, you know. They would talk to me as if I wasn’t, and that’s what I was really worried about: how are people going to treat me afterwards. And these people were awesome. […] How they made me laugh and how they made me feel, I didn’t feel like I was any different than anybody else besides the fact that I’m going to have to push myself in a wheelchair.” [participant #2].
Patients did not want to be redefined based on their tSCI and appreciated being treated with dignity. “[…] to me it’s very comforting to not be treated like a piece of inventory, but to be treated like a person. […] It’s importat to me because I felt that he (my surgeon) is treating me still with the dignity that anybody that goes through what I went through really deserves to be treated. And it’s hard enough to deal with what you’re going through, without having to deal with any sort of humiliation.” [participant #3].
Delivery of information
In this study, participants reported a large degree of variability in the amount of information they wanted to receive in the acute care setting. Comments ranged from “any information is good information” [participant #8], to “not really wanting to know too much…” [participant #10]. Despite this variability, the majority of patients reported only being able to manage or remember a limited amount of information at the time of their acute care admission due to pain, medications, and their state of shock, especially during the first 3–10 days post injury.
Patients’ initial state of shock
Many patients report understanding the severity of their injury upon impact. “As soon as I hit the ground, I knew. […] It was an instant disconnect from my lower body.” [participant #9]. Although some patients had immediate insight to their injury, others recognized it in the emergency department during their initial evaluation. Most patients remember being told by a surgeon that their neck or back was broken and they needed urgent surgery. Patients consistently said this was sufficient information at the time due to their state of shock. They understood they were severely injured, they knew they were in pain and there was a lot going on, as such they were not in a state to take in any further information. “They said I had a major injury to my spinal cord, […] ‘we’re going to have to operate on you’, and I said ‘well, that’s fine, do whatever you have to do’ You are in so much pain, right?, it’s like take it away, take it away.” [participant #8].
Most participants had difficulty recalling any details the first few days after surgery. Those who did remember having discussions with their surgeon, describe vague and hazy details attributing this to their state of shock. Most patients were unable to retain any information in regard to diagnosis and prognosis and were not interested in having lengthy discussions as they were still adjusting emotionally. “It’s too early… I need at least a week to absorb and go through all my emotional levels.” [participant #8]. The length of this initial state of shock before patients were ready for more detailed discussions varied from 3 to 10 days post-operatively.
On the contrary, family members consistently wanted to know as much information as possible early on, and patients did not voice concern over family members receiving more information at an earlier time than themselves. Interestingly, patients did not mention the importance of having a family member present during critical conversations. When specifically asked, patients were indifferent to whether family members were present during patient–physician discussions about their injury. Patients felt the role of a family member was supporting them through the recovery process, maintaining encouragement and motivation during their rehabilitation, not necessarily collecting and recalling medical details for them.
Stating the facts
Patients described that receiving factual details about their injury, such as morphology of their bony injury, helped them process and better understand their injury. “He did mention that there was bone in my spinal cord. It’s the right thing to say, to explain what the injury actually is. […] He explained very well and clearly, in a few words only, as to what it looked like and that’s all I wanted to hear really.” [participant #9] The majority of patients felt that brief surgical details pertinent to their injury were important and sufficient in helping them understand their diagnosis in the acute care setting.
Understanding the difficulty in predicting prognosis
Most participants reported in their interviews that they were not told a definitive prognosis during their acute care. They described surgeons being vague about long-term functional outcomes. They were repeatedly told it is too early to predict their recovery. “It always was in the back of my mind you know, am I going to be able to walk, and stuff like that, but umm like nobody ever told me you’re not going to be or you will, and I can understand why they don’t want to give people false hope or give them bad news when it is, because from what I understand, nobody really knows how the healing process is going to affect individual people, so it’s a touchy thing to speculate one way or the other on how they are going to be.” [participant #10] “[My surgeon] was sort of wishy-washy about it and basically kept saying we’d have to ‘wait and see’.” [participant # 15].
Due to the lack of specificity in regard to outcomes and prognosis, participants inherently understood there was variability in prognosis after a tSCI. Many patients felt this variability was the personal aspect of their injury. “I think for me it was kind of more like just a personal thing, how I was going to do, and it didn’t really matter how other people’s recovery was, because I think in my mind anyway, mine was going to be different.” [participant #15].
Some patients even preferred not to be given a definitive prognosis, as it motivated them to take ownership of their injury and push themselves during rehabilitation to maximize their function and make the best of their diagnosis and prognosis. “You kind of take everything with a grain of salt, right? You know you’re in this position, you can’t have someone come in and tell you what your life is going to be like after that. That decision is kind of up to you, as far as you push yourself and stuff like that. As far as things coming back; the body is the only one in control of that, right?” [participant #8].
Overall, the realistic difficulty in predicting long-term prognosis for patients with tSCI is often utilized in a positive manner by patients.
Balancing truth and hope
During the interviews, participants spontaneously and recurrently mentioned the concept of balancing the truth of their new reality with the hope for recovery. Some patients preferred a straightforward, honest, and truthful discussion of diagnosis and prognosis. They did not want any information withheld from them and they did not want false hope.
On the other hand, there were participants who remained very hopeful that they would recover function after their injury and when a healthcare provider suggested otherwise, this created a negative environment for them. For these patients this frank realism squandered their hope and created adversity between the patient and healthcare providers. “They don’t know everything. They have history of […] what the most likely prognosis is. But they don’t know the size of a human spirit. […] They don’t know how it all works. They have a general idea.” [participant # 6] It is difficult to delineate whether this type of attitude or feeling represents hope or a state of denial, which is one of many coping mechanisms. In some participants, this feeling persisted, even 2 years after their injury. “I mean, I’m pretty sure I’m not going to walk again. I’m pretty sure. But that doesn’t mean that I won’t. It doesn’t mean that something’s not going to happen.” [participant #6].
Even participants who wanted full details about diagnosis and prognosis, still spoke of the benefits of maintaining hope. Hope consistently acted as a major motivator for participants and encouraged them to work harder in physiotherapy and rehabilitation.
“[…] if you are hopeful and you work for it, it may or may not happen, but at the end of the day you’re still going to be healthier than if you weren’t doing stuff, right? As I see it, I think that it’s better to have more hope than to have no hope at all.” [participant #2].
Emphasizing short term goals
Most patients felt short term goals were more tangible and less overwhelming than the prediction of their long-term prognosis. Once obtained, these short term goals led to the sense of accomplishment and success, which was important in their recovery process. “Better to focus on the present and what you’re doing now and how you can improve now in little steps. Just being able to accomplish things: small goals, big accomplishments.” [participant #5].
Moreover, receiving positive feedback when attaining these short term goals is a rewarding aspect of recovery for patients. “[…] everybody kind of has their own recovery line. I feel that as I was meeting milestones […] and they actually were saying […] ‘you’re doing really well’, that’s the kind of feedback at the time I think is most important. It’s as you are experiencing the success, it’s then that it makes sense to you. (…) [If] you’re too focused on the end point, and expect to be at that point, I don’t think you get to have that joy [of experiencing small successes].” [participant #14].
Long-term prognosis and functional goals were discussed most often in the rehabilitation phase of their care. Most participants felt this was an appropriate time for this discussion. In the acute care setting, patients preferred to focus on short term goals and receiving positive feedback during this process was important for maintaining motivation.
Patients preferred the positive phrasing to help set a positive frame of mind. A family member gave a good example by suggesting “the ventilator is helping him breathe for now”, rather than “he cannot breathe on his own” [family member of participant #1]. The former phrasing conveys a sense of control over the situation, while implying the same information as the latter statement.
In addition to the power of positive reinforcement, participants appreciated healthcare providers who were genuine, professional, and showed clear direction with regards to their care and/or treatment plan. Patients felt reassured with a care plan pathway in place and understanding the next step in their care.
The work by Kirschblum et al. revealed that patients with tSCI wish to be spoken to in a straightforward, sensitive, and positive manner when discussing prognosis . Our study adds to this data through interactive interviews that allowed for a more in-depth exploration of the participant experience. The findings in this study demonstrate that patients attribute as much, if not more importance to how healthcare professionals communicate with them, as they do to what is communicated to them during their stay in acute care. Sand et al. reported that after sustaining a life-altering tSCI, patients experience profound feelings of vulnerability while in hospital . This can be exacerbated by being treated as a disabled individual, emphasizing the loss of function and dehumanizing patients. Our study is in keeping with this, showing that the healthcare providers’ general demeanor towards patients is of utmost importance.
In terms of the delivery of information in acute care, Sand et al. reported that patients feel that diagnosis and prognosis are difficult to understand, vague, and lack relevant facts, leading to patient misconceptions about their long-term outcomes . The findings in this study were consistent with regard to patients’ perception of vague prognosis and the lack of definitive information on long-term outcomes. However, patients did not perceive this as a negative aspect of communication. Instead, they accepted and understood the difficulty in predicting prognosis acutely. In addition, this study found that by providing ambiguity in prognosis, patients found this to be encouraging and allowed them to take charge of their situation and make efforts to achieve the best outcome possible for their unique injury. Moreover, participants interviewed mentioned the benefits of not looking too far ahead, but rather acknowledging the present situation and focusing on small goals. This is consistent with not requiring too much information about the long-term outcomes and accepting vagueness in prognosis.
The survey by Kirschblum et al. identified physicians as the preferred source of information for patients after their injury . The participants in this study mostly referred to surgeons when commenting on the initial discussions of diagnosis and prognosis in hospital, however, the vast majority recall discussions with allied healthcare professionals as appropriate and helpful. Patients were satisfied with a holistic team approach, nonetheless, patients valued having a relationship with their surgeon.
A common recurring theme during the interviews was the importance of maintaining hope in the face of such a devastating diagnosis. Hope has been associated with lower levels of depression and psychological improvement after injury [18,19,20]. Kirschblum and Fichtenbaum highlight that hope does not have to be offered in relation to neurologic improvement, and that even in patients with a complete spinal cord injury, hope for functional improvement, increased independence, social reintegration, and quality of life is realistic . The hope that patients may seek regarding neurological prognosis should thus be replaced by information about rehabilitation and adaptation to a new normal.
One specific area of improvement for communication that was revealed in these interviews was that participants identified a lack of clear information about the rehabilitation process. This was a source of anxiety for patients about their future care. It would likely be helpful if rehabilitation physicians (physiatrists) could be involved with patients in the acute care setting, in order to make them feel more informed and confident about their treatment pathway. Some participants mentioned lack of continuity of care from acute care to the rehabilitation institution, and having physiatrists involved earlier may help fill this gap.
Through the identification of major and minor themes (Fig. 1), that are important to patients when conveying prognosis after an acute tSCI, this study provides a starting platform upon which to expand physician–patient interactions. These themes may be incorporated in orthopedic and neurosurgical spine training curricula to improve communication skills in the setting of spinal cord injury. In addition, the results of this study emphasize the importance of delivery of information from many different healthcare providers. The team approach is valuable from a patient perspective and having a spine specialized care pathway and team may provide a model for high quality care.
Although this study helps to better appreciate the patient experience in the acute care setting after sustaining a tSCI, it has certain limitations. The small number of patients and family members interviewed all come from a single acute spinal care unit, where all members of the care team are highly specialized in spinal care. This may not be generalizable to all centers providing spinal care. Finally, there may be some recall bias introduced in the results given the interviews being conducted up to 1 and 2 years after the injury.
Physician demeanor and delivery of information were two important pieces to establishing appropriate communication when discussing diagnosis and prognosis of a tSCI. Developing an individualized patient–physician relationship humanized the patient experience. In addition, maintaining patient integrity, autonomy, and dignity, helped preserve patients’ sense of self-worth during this vulnerable time. Most patients preferred brief details in the early period post injury, followed by surgical facts to help understand their diagnosis. Providing this information with a team approach in a positive, compassionate, and empathetic way was critical to patients. Patients preferred a balance of their new reality with hope for recovery by focusing on small, tangible rehab goals reinforced by positive feedback regardless of their neurologic deficits. The knowledge obtained in this study can help guide all healthcare providers’ communication and interactions with patients after sustaining tSCI in the acute care setting.
The datasets generated during and/or analysed during the current study are not publicly available. Electronic records will be stored on a secure, password-protected hospital server. Hard-copy transcripts and surveys will be kept in locked filing cabinets in a locked office, at the Rick Hansen Institute and/or in the Spine Research Center office, both located at Blusson Spinal Cord Center at Vancouver General Hospital. Only team members approved through ethics will have access to the data.
All transcripts and surveys will be destroyed 5 years after the conclusion of the project. The digital recordings of interviews will be stored on a secure server, and backup copies will be stored on a password-protected external hard drive in a locked filing cabinet at the Blusson Building. Research ethics approval will be sought before any secondary analysis is undertaken.
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Valerie Oglov for interviewing a subset of the patients and coding the data. Leilani Reichl and Allan Aludino for patient recruitment and enrollment.
The Praxis Spinal Cord Institute is registered under the Spinal Cord Injury Solutions Network (SCISN), which is a Registered Canadian Charity who receives donations to support spinal cord injury research. Money was received from Praxis to cover the costs related to data collection (contract salary for Oglov V, and gift card incentive for participants in compensation for their time).
Conflict of interest
The authors declare no competing interests.
This study was approved by the UBC Behavioral Research Ethics Board prior to commencement of participant recruitment. The reference number for ethics board approval is H13-02355.
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Nadeau, M., Singh, S., Bélanger, L. et al. Patient perspective: diagnosis and prognosis of acute spinal cord injuries. Spinal Cord 59, 865–873 (2021). https://doi.org/10.1038/s41393-021-00641-5