Identifying critically ill patients who have unmet needs for palliative care is the first step in integrating the palliative approach for patients and their families into intensive care units.
To explore how palliative care is addressed in an intensive care unit and to develop and test a screening tool for unmet needs that may be met through the palliative approach.
A mixed-methods study was conducted in the intensive care unit of a tertiary care hospital to explore the palliative approach. Focus groups and a survey were used to identify items for the screening tool. After pilot testing of the tool, interviews were conducted to refine the content.
The first focus group (14 participants) revealed participants’ frustration with unclear communication and a desire for better collaboration among health care team members regarding patients with serious life-limiting illnesses and their families. The survey (response rate: 20%; 30 of 150) showed clinicians’ preference for items that identify specific needs rather than diagnoses. The second focus group (8 participants) yielded strategies to operationalize the tool for all patients in the intensive care unit. After 2 separate pilot testing cycles, bedside nurses noted that use of the screening tool prompted earlier discussions and broader assessments of what is meaningful to patients and their families.
Development of a screening tool for unmet palliative care needs among intensive care unit patients is feasible and acceptable and may help to systematically integrate the palliative approach into routine care for critically ill patients.
Enhancing palliative care has become a health care priority. According to the former US Institute of Medicine (now the National Academy of Medicine), improvement in the palliative approach is necessary to meet present and future health care challenges.1 A continued focus on “saving” or curing patients with serious illness (defined as a health condition with high associated mortality that adversely affects quality of life and daily functioning or a condition resulting in caregiver strain)2 in critical care makes it difficult to integrate the palliative approach because of competing priorities related to resuscitation, organ support, and other treatments.3
According to the Canadian Nurses Association, the palliative approach involves palliative care principles such as promoting hope, dignity, and relief of suffering throughout the trajectory of a life-limiting disease, rather than just at the end of life.4 Communication with the patient and the patient’s family is central to the decision-making process and involves sensitive and ongoing elicitation of their values, needs, and wishes with a reduced focus on prognosis.4
The palliative approach is a philosophy of care that does not require specialty palliative care services and can be systematically integrated into a care setting early in the disease course by generalist clinicians.5–8 The integration of palliative principles into the intensive care unit (ICU) setting requires improvement.9 Seriously ill patients and their families often have specific unaddressed physical, psychological, emotional, and spiritual needs.10 Various tools and models have been developed to help identify patients who have unmet palliative needs through screening criteria or “triggers.”5,10–17 To our knowledge, however, no validated or standardized palliative screening tools have been expressly designed for the ICU. Many palliative screening tools for the outpatient and primary care settings contain general and specific criteria for health decline not well suited for the ICU.15–17 Tools for the ICU include mostly disease-oriented triggers that have been developed for specialty palliative care consultation and focus less on psychosocial and spiritual support needs.11 We incorporated existing tools into the development of a screening tool used by nurses in our ICU, referring to recommendations and guidance from the Improving Palliative Care in the ICU Advisory Group.18 Engaging bedside nurses in such efforts is important and can promote high-quality palliative care in the ICU.19–21
This study was conducted in a 15-bed medical/surgical ICU within St Paul’s Hospital, a 435-bed Canadian university-affiliated tertiary hospital in Vancouver, British Columbia. The research team included social workers, physicians, and ICU nurses. During the study, we invited all ICU team members to assist with the development of the tool. This study was reviewed and approved by the University of British Columbia/Providence Health Care Research Ethics Board.
We used a mixed-methods approach22 to explore how palliative care is addressed in our ICU and to develop the tool and examine its usefulness and acceptance in daily ICU practice. This approach consisted of an initial exploratory focus group, a quantitative survey, a second focus group, and 2 periods of pilot testing with structured interviews and revisions to the tool after each testing period. Data were collected for 1 year (see Figure). Both focus groups were led by a research team member who has extensive experience with and knowledge of the palliative approach. Invitations and reminders to participate in the focus groups, survey, and pilot testing were sent by email to all ICU staff by ICU medical and nursing leaders during the study period, and posters were distributed throughout the ICU.
The palliative approach is a philosophy of care that should be integrated early by generalist clinicians for patients with serious illness.
All ICU clinicians (n = 150) including nurses, physicians, social workers, respiratory therapists, speech therapists, and physical therapists were invited to participate in both focus groups and complete the survey. In addition, a personal invitation was sent to the leaders of the palliative medicine and ethics departments. Both focus groups lasted 1 hour and took place in the hospital where the research was conducted. Field notes were taken, and the focus groups were audio-recorded and transcribed by an experienced transcriptionist.
Phase 1: Tool Development
First Focus Group
The first focus group explored clinicians’ experience with how palliative care is approached in our ICU. This group was divided into 2 parts. First, participants were asked to explore how palliative care is understood in our ICU, along with any concerns and challenges. The focus group leader then defined the palliative approach. For the second part, participants were asked to explore ways of improving how palliative care is addressed in our ICU.
We developed a survey to rank screening criteria using 4 sources.5,10,17,18 This anonymous Likert-style survey (see Supplement 1, available online only at www.ajcconline.org) was sent via email to the 150 ICU clinicians and was made available in printed form in the ICU. Clinicians were asked to select the top 7 potential screening criteria from a list of 30, with the intent of creating a final screening tool that would not be too time consuming to use. Criteria items for the survey included needs and disease criteria. Clinicians were instructed to choose those items that were most likely to identify patients and family members with unmet palliative care needs and with the worst anticipated outcomes. Results from the survey were tabulated, and then the research team created a draft tool based on the survey results and other reference sources10,11,17,23,24 in preparation for the second focus group.
All ICU clinicians were invited to help develop the tool using an iterative method that allowed the screening tool to be refined and tailored.
Second Focus Group
We shared the survey results and draft tool with the second focus group. We asked participants in this group to share their ideas and suggestions about how to operationalize the tool.
We used an inductive approach involving interpretive description25 to generate themes and ideas. The research leader (J.V.) and another research team member repeatedly reviewed the focus group field notes, audio recording, and transcript to analyze them. We used large poster boards to help group and organize common words, ideas, and participant comments in order to improve our understanding of the phenomena. Our data collection and analysis were intentionally focused on eliciting new and unique ideas from participants that would contribute to the development of the tool.
We shared all focus group analyses with a qualitative research expert who has comprehensive knowledge of the palliative approach and ethics. The expert’s findings were shared with all members of the research team. A report of the first focus group was shared digitally and in paper form with the ICU health care team before the second focus group was held. A spreadsheet program (Microsoft Office Excel) was used to collect and calculate survey results.
Phase 2: Pilot Testing of the Tool
The tool was iteratively tested by 10 different nurses for 2 testing cycles. These nurses did not attend the focus groups. Only 2 nurses volunteered for testing; therefore, the research leader (J.V.) and a research team member (neither works directly with staff) randomly approached nurses during their shift and invited them to test the tool. Overall, 2 nurses had palliative care experience, and all nurses except 1 had more than 3 years of ICU experience. We did not collect detailed demographic information on the participating nurses.
Each of the testing cycles occurred over 2 weeks. The research leader (J.V.) met with each nurse in the ICU for 15 minutes before the beginning of the shift to review the tool’s purpose, definitions, and instructions. Each nurse used the tool for 2 consecutive day shifts. The research leader (J.V.) met with the nurse at the end of the second day shift in the ICU. These interviews lasted approximately 30 minutes and were structured using a prepared list of questions about the feasibility and acceptability of the tool (Table 1). Interviews were recorded and transcribed anonymously by an experienced transcriptionist.
After 10 nurses tested the tool for the first testing cycle, the research leader (J.V.) and another research team member listened to the audio recordings of the interviews, read the transcripts individually, and highlighted and categorized common and unique responses. The final analysis was then shared with the rest of the research team, and the tool was revised. The testing cycle was then repeated by a different group of 10 nurses, after which the research leader (J.V.) and a different research team member highlighted and categorized common words and responses individually. This analysis was shared with all other research team members, and emerging patterns were discussed. The tool was again revised.
First Focus Group
The first focus group was attended by 14 participants: 7 ICU nurses and 1 palliative care nurse, 3 respiratory therapists, 2 physicians from the palliative medicine and ethics departments, and 1 ICU hospital volunteer (a retired nurse).
The following themes emerged from our analysis:
Meaning of the Palliative Approach and Quality of Life. Participants emphasized that there are different perceptions of the meaning of “palliative approach” and that tensions sometimes arise in attempts to optimize both quality and quantity of life: “I think there’s a misconception in palliative care, and it’s unfortunate, that moving to palliative care means doing less than intensive care.”
Need for Improved Communication With Patients and Families and Among Team Members to Clearly Identify Goals of Care. Participants emphasized the need for earlier, more open, and clearer communication, including timing of discussions about goals of care, identification of what patients want, and documentation practices:
That is exactly why I feel like it needs to be established early, like in the first week. You don’t know who’s going to be there in 4 months or who’s going to be there another 2 days. You keep delaying and think they’re going to get better.
Need for Better Understanding of Direction of Care and Team Collaboration. Focus group participants made it clear that complex decision-making requires a common understanding of the patient’s goals of care in the ICU:
What does that mean [“saved”], you know, oftentimes that means … does that mean someone gets discharged alive from the ICU? Oftentimes, what we see is that they end up never returning to their state of function. They end up in a facility; they end up in a situation that they never wanted.
Surveys were completed by 30 of the 150 potential respondents (response rate: 20%). A specific item was considered for inclusion in the tool if at least 15 of the 30 respondents selected it (Table 2). We chose this number randomly to identify items selected by a majority of respondents.
Second Focus Group
A total of 8 participants attended the second focus group: 2 ICU nurses, 2 ICU physicians, 1 respiratory therapist, 1 speech pathologist, 1 social worker, and 1 ICU hospital volunteer (a retired nurse). Participants suggested ways to simplify the tool and recommended using the tool for all patients, not just for patients with the highest risk of dying. Participants suggested using specific needs rather than specific diagnoses as screening criteria. The research team revised the tool on the basis of this feedback and prepared for pilot testing by bedside nurses (see Supplement 2, available online only).
For these pilot testing cycles, we developed interview questions (Table 1) to elicit information on the tool’s feasibility and acceptability, with less attention to outcome. Participants reported the following benefits and challenges of using the tool:
Benefit: Triggers “Big Picture” Thoughts. Use of the tool led nurses to think about the “bigger picture,” including the patient’s understanding of his or her illness, values, and wishes:
Yes, I think it’s good because it does get you to think about some of these things, like long-term goals and advance care planning when you’re busy and you’re not focused on that.
Benefit: Screens for Unmet Needs. Use of the tool caused nurses to think more broadly about unmet needs and what patients want, instead of focusing on actual treatments: “It makes you think of certain goals and wants and needs and not just what we’re doing to them.”
Benefit: Prompts Earlier Communication and More Detailed Assessments. Although nurses reported that they already assess the needs of patients and their families, use of the tool prompted earlier discussions and more thorough assessments that could be shared with other members of the health care team:
So, maybe if we had the tool we would do it earlier, you know, rather than waiting like 10 days. I mean I don’t know… . If we had the tool, we would have those discussions earlier.
Challenge: Time. Some nurses expressed difficulty completing the tool when they were busy. They found looking through the medical record to be challenging, especially for patients with lengthy stays, and needed 2 shifts to develop a rapport with patients and family members:
It triggers you to look through the chart more and then it also makes you realize, “oh my gosh, there’s no actual one place to find all this information.”
I had a lot of time today to sit down and chat, whereas often you don’t have that, right? I could sit down and we talked about a lot of things about their tribe and the clans and how they approach death and that sort of thing.
Challenge: Definitions and Documentation. Nurses confused goals of care with daily goals and were unsure of the meaning of unmet needs, advance care planning, and the palliative approach. Moreover, nurses who understood the meaning of goals of care expressed that although ICU nurses assess, document, and report on organ systems in detail, they do not do the same for psychosocial assessments and findings:
The goals of care was difficult because the doctors don’t write the notes in terms of goals of care, but I know what the goals of care for this man were. Like to extubate, you know. We want to get his wound healed. We try and mobilize him.
On the DNR [do not resuscitate] form, you’ll see a little more detail about life-supportive measures, but never anything about “I want to walk again” or “I want to eat on my own again.” I can’t think of anywhere that would be said, other than passed on verbally, which is not documented.
Challenge: The Word Palliative. Nurses found that their understanding of the terms palliative approach and goals of care improved over both testing periods, but they acknowledged how difficult it would be for the health care team, patients, and families to accept this new conceptualization:
Unfortunately it’s one of those words to me that’s been ingrained. So, yes, I appreciate that this is going to require a new way of thinking.
We selected specific needs criteria from other tools in the literature,5,11 and we used the palliative care needs screening tool developed by Creutzfeldt et al,10 which consists of 4 clear questions that are systematically integrated into daily rounds by an ICU physician. We adapted these questions for our tool to be used as discussion prompts by ICU nurses.
Unlike other published tools such as the Supportive and Palliative Indicators Tool (SPICT),17 our tool includes instructions on when and how often the tool should be used, selected needs criteria, suggested action items, and a section for tracking documentation of discussions (including on goals of care) that can be applied to all ICU patients. In addition, our tool includes discussion prompts for nurses to consider in making broader assessments about what is meaningful to patients and their families. The tool promotes collaboration among health care team members by prompting nurses to share this information and to perform systematic documentation. Finally, the tool includes a section on definitions to help clarify terms used.
Although nurses believed that they already assess their patients for unmet physical needs, they found that the tool was easy to use and prompted them to communicate and think more broadly about patient goals of care, advance care planning, and assessment of unmet psychosocial and spiritual needs. Our study did not elicit nurses’ actual discussions with patients or comfort levels during these conversations, but research has shown that nurses believe that such communication is important for high-quality patient care.20
Some nurses found it challenging to complete the tool during busy times and needed more than 1 shift to develop rapport with patients and families and locate goals of care and advance care planning documentation. Early implementation of the tool and development of electronic health records may facilitate obtaining and tracking information, resulting in improved communication regarding unmet needs.24 Knowledge gaps in nurses’ understanding of the palliative approach, goals of care, and advance care planning may have led nurses to feel unprepared to complete the tool. Education about end-of-life care is needed to ensure that all clinicians understand what is currently known and can work collaboratively to meet patients’ needs.3,7 Communication skills training is important for all clinicians wanting to integrate the palliative approach into patient care, especially bedside nurses, who have close contact with patients and families.19–21,26 Such training might facilitate ongoing use and acceptance of the tool by all health care team members.
A limitation of this study is the very low survey response rate. Also, nurses used the tool for only 2 shifts under the guidance of the research team, making it unclear how readily the tool might be used in general practice. The tool was developed and tested for a single medical/surgical ICU in a university-affiliated tertiary care setting, and its applicability to other critical care or acute care settings is unknown. It is also unclear how data from this tool might be translated into an electronic health record.
This tool prompts nurses to collaborate with the health care team and document what is meaningful to patients.
We plan to implement the tool in our institution. Future research should focus on the intended outcome of the tool, namely, identification of unmet palliative care needs. Nurses’ knowledge of and comfort level with discussions on goals of care and advance care planning will require further investigation.
We found that a screening tool to identify unmet needs for the palliative approach in an ICU could be developed by using an iterative interdisciplinary method. Our tool helped nurses become more aware of the palliative approach, including the need to identify patients’ values and preferences and communicate them more clearly to the health care team. Development of a screening tool for unmet needs is an important first step in systematic integration of the palliative approach in an ICU.
We thank Patricia Rodney, PhD, RN, for her expert contributions and guidance on this project.
This study was supported by the St Paul’s Hospital Practice-Based Research Challenge and the Canadian Association of Critical Care Nurses/Spacelabs Innovative Project Award.
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