In brief
Six Western Canadian nurse practitioners described navigating uncertainty, their own assumptions, ethical conflict, rigid health systems, and efforts to include patients and families when making cancer treatment decisions for older adults with neurocognitive disorders. The authors call this a 'complex web' requiring...
What this article is about
Quick Answer
Six Western Canadian nurse practitioners described navigating uncertainty, their own assumptions, ethical conflict, rigid health systems, and efforts to include patients and families when making cancer treatment decisions for older adults with neurocognitive disorders. The authors call this a 'complex web' requiring relational, ethics-of-care-based decision-making and systemic support.
Student takeaways
Key Takeaways
- NPs experienced significant uncertainty in treatment decision-making because standard oncology assessment tools such as ECOG and Karnofsky performance scales did not account for cognitive tolerance in patients with a co-occurring NCD.
- NPs drew on integrated cancer, dementia, and prior RN knowledge, but sometimes carried assumptions about a patient's capacity or prognosis into a visit that were later revised after direct contact with the patient.
- NPs faced ethical challenges, particularly around treatment futility and end-of-life transitions, when family members' wishes diverged from the NP's clinical judgment.
- NPs had to creatively navigate rigid healthcare organization structures, including tight scheduling and administrative rules, sometimes using informal workarounds such as unofficial extended appointments or facility visits made against managerial advice.
- NPs used deliberate relational strategies to foster shared decision-making with older patients and their families, such as timing appointments to a patient's best cognitive hours, structuring multi-voice family discussions that still centred the patient, and gathering collateral information from family members.
Student summary
Why This Research Matters
Older adults living with a neurocognitive disorder (NCD) such as mild cognitive impairment or dementia face extra barriers when they also develop cancer. They tend to have worse access to care, higher mortality, and less say in what happens to them. This Canadian Journal of Nursing Research study asked a question almost nobody had asked before: what is it actually like for nurse practitioners (NPs) to make treatment decisions for this exact group of patients?
The researchers used interpretive description, a qualitative approach built for generating practical, clinically useful knowledge rather than abstract theory. They interviewed six NPs from Western Canada, recruited through the Canadian Association of Oncology Nurses, over November and December 2022. The NPs had a mix of experience levels and practice settings: three worked in community outpatient clinics and three in tertiary care outpatient clinics, and four specialized in oncology while two worked in general gerontology. Each NP completed a semi-structured Zoom interview lasting 42 to 67 minutes, and the researcher kept reflective journals to capture tone, hesitation, and first impressions alongside the transcripts. The team analyzed the data using Braun and Clarke's six-step thematic analysis, refining themes together as a group rather than relying on one person's interpretation.
Five themes emerged. First, NPs experienced real uncertainty when a patient's cognition or cancer status shifted, especially because standard tools like the ECOG or Karnofsky performance scales were not built to capture cognitive tolerance for treatment. One NP described 'shooting in the dark' when she lacked the data she needed. Second, NPs relied on a blend of oncology knowledge, dementia knowledge, and earlier RN experience, but sometimes carried assumptions into a visit that turned out to be wrong once they actually met the patient. One NP assumed age alone would predict treatment tolerance until performance-status data proved otherwise. Third, NPs faced ethical tension, particularly near the end of life, when families wanted to continue treatment that the NP believed was no longer helping. Fourth, NPs had to out-maneuver rigid healthcare systems: tight scheduling, heavy caseloads, and administrative rules that were not designed around patients who need more time. Some NPs booked unofficial extended virtual visits or made home and facility visits against advice from managers because they believed it served the patient better. Fifth, and perhaps most encouragingly, NPs actively worked to include older patients and their families in decision-making. They timed appointments around a patient's best hours of cognitive function, invited each family member to speak in turn while still keeping the patient central to the conversation, repeated information patiently, and quietly gathered extra details from family members by phone when a patient could not report everything themselves.
The authors describe NP decision-making in this population as navigating 'a complex web' rather than following a straightforward checklist. They argue that this population's underrepresentation in cancer clinical trials leaves NPs with little solid evidence to draw on, and that comprehensive geriatric assessment tools could help but are inconsistently funded and available across Canada. They also suggest that an 'ethics of care' framework, emphasizing relationships and context rather than rigid rules, could help NPs manage conflict with families near the end of life.
For nursing students, this study is a reminder that clinical decision-making with complex older patients is rarely just about applying an algorithm. It is relational work that requires flexibility, humility about one's own assumptions, and a willingness to advocate within an imperfect system. The study only involved six NPs from Western Canada, evenly split between community and tertiary care outpatient clinics, and data collection happened during a period of pandemic-related healthcare worker burnout, so findings should be read as an in-depth look at these six experiences rather than a nationwide picture.
Source abstract
Study Overview
Background and Purpose Nurse practitioners (NPs) make treatment decisions impacting older people with neurocognitive disorders (NCDs), like mild cognitive impairment and dementia. Research has shown that when this patient population has cancer, they face barriers accessing care, have higher mortality rates and limited involvement in decision-making. Despite their critical role, few NPs have been included in studies exploring treatment decision-making affecting this population. To improve experiences for older people and their families, this study explored NPs’ decision-making experiences when individuals were living with an NCD and cancer. Methods This qualitative study was informed by interpretive description, a practice-oriented approach. Data collection methods included semi-structured interviews and reflective journaling. Data analysis was iterative with identification and revision of themes that have accompanying illustrations. The research team drew on relevant nursing and practice knowledge to identify meaningful implications for NP practice. Results Five themes were identified which included the observation that participants’ decision-making was shaped by NPs’ knowledge and assumptions. NP participants experienced uncertainty and ethical challenges while needing to creatively navigate health systems. Drawing on nursing knowledge, NPs sought to actively involve older people and their family in decision making. Conclusion NPs experience complex treatment decision-making when older people are living with an NCD and cancer, requiring navigation of multiple factors and challenges. The results showed shared decision-making processes are applied, suggesting that NPs take up relational treatment decision-making practices. However, there is a need for institutional change, further education, and research about NPs experiences in community settings.
Evidence appraisal
Main Findings
- NPs experienced significant uncertainty in treatment decision-making because standard oncology assessment tools such as ECOG and Karnofsky performance scales did not account for cognitive tolerance in patients with a co-occurring NCD.
- NPs drew on integrated cancer, dementia, and prior RN knowledge, but sometimes carried assumptions about a patient's capacity or prognosis into a visit that were later revised after direct contact with the patient.
- NPs faced ethical challenges, particularly around treatment futility and end-of-life transitions, when family members' wishes diverged from the NP's clinical judgment.
- NPs had to creatively navigate rigid healthcare organization structures, including tight scheduling and administrative rules, sometimes using informal workarounds such as unofficial extended appointments or facility visits made against managerial advice.
- NPs used deliberate relational strategies to foster shared decision-making with older patients and their families, such as timing appointments to a patient's best cognitive hours, structuring multi-voice family discussions that still centred the patient, and gathering collateral information from family members.
Practice transfer
Clinical Relevance
- NPs caring for older adults with both a neurocognitive disorder and cancer may benefit from deliberately combining oncology performance-status tools with cognitive and functional assessment, since standard cancer tools alone did not resolve the uncertainty participants described.
- Clinicians should treat their own assumptions about a patient's capacity or prognosis as provisional and revisit them through direct, ongoing contact with the patient rather than relying on assumptions formed before the visit.
- An 'ethics of care' approach that emphasizes relationship, context, and compassion may help NPs manage conflict with families around treatment futility and end-of-life decisions, rather than relying solely on procedural or purely biomedical reasoning.
- NPs and their organizations may need to formally recognize and support flexible scheduling (e.g., longer or off-hours appointments, home or facility visits) for this population, since participants described such accommodations as necessary but currently unsupported by their institutions.
- Practical strategies such as timing appointments around a patient's cognitive peak, using structured turn-taking in family discussions, and gathering collateral history from family members can support genuine patient and family participation in decision-making despite cognitive impairment.
Faculty notes
Educational Relevance
This qualitative study addresses a genuine gap in the literature: while research has documented that older people with neurocognitive disorders (NCDs) and cancer experience worse access to care and higher mortality, almost no studies had examined the perspective of the nurse practitioners (NPs) actually making treatment decisions for them. Shapkin, Newton, MacKinnon, and Holroyd-Leduc used an interpretive description design, chosen deliberately for its orientation toward generating clinically applicable knowledge grounded in constructivist and naturalist assumptions rather than purely theoretical description.
Six NPs were recruited through the Canadian Association of Oncology Nurses using purposive sampling, yielding a sample with a spread of experience (6 to 20 years as NPs), age (35-44 and 55-64 clusters), practice setting (three community outpatient, three tertiary care outpatient), and specialty (four oncology, two general gerontology). Data collection combined 42-67 minute semi-structured Zoom interviews with reflective journaling and demographic questionnaires; analysis followed Braun and Clarke's six-step thematic analysis, supported by NVivo 12 and iterative team discussion among all four authors, which strengthens analytic rigor through investigator triangulation.
The five themes offer strong material for seminar discussion: (1) uncertainty when cognitive or oncologic status is ambiguous or shifting, compounded by standard oncology assessment tools (ECOG, Karnofsky) not accounting for cognitive tolerance; (2) tension between NPs' integrated cancer/dementia/RN knowledge base and assumptions that sometimes proved inaccurate on direct contact with a patient; (3) ethical strain, most acute around end-of-life transitions and family disagreement about treatment futility; (4) the need to navigate and sometimes circumvent rigid organizational structures (scheduling, caseloads, interdisciplinary hand-offs) through informal workarounds such as unofficial extended visits; and (5) deliberate relational strategies to foster patient and family participation, including timing appointments to a patient's cognitive peak, structured multi-voice family discussions that still centre the patient, and collateral information-gathering.
The discussion is worth assigning directly: the authors link NPs' uncertainty to the well-documented underrepresentation of older adults with cancer in clinical trials, note the uneven availability of comprehensive geriatric assessment across Canada, and propose an 'ethics of care' framework as a lens for the end-of-life conflicts NPs described. This reframes the findings away from a simple 'NPs need more training' conclusion toward a systems-and-ethics argument that has clear application to Canadian health policy discussions.
Limitations instructors should flag explicitly: the small sample of six, geographic concentration in Western Canada with no other provinces represented, very small numbers in each practice setting (three community, three tertiary) for a population whose care spans community settings — a gap the authors themselves flag by calling for further research on NPs' experiences in community settings — and data collection during a period of pandemic-related healthcare worker strain that may have shaped both recruitment and participant candour. No external funding was received and no conflicts of interest were declared.
For teaching, this article pairs well with content on shared decision-making, capacity assessment, comprehensive geriatric assessment, moral distress, and health-system navigation. Strong discussion prompts include asking students to compare the NPs' informal workarounds against their own clinical placements, and to debate whether an 'ethics of care' framework is sufficient without accompanying policy change.
Critical appraisal
Limitations
- The sample included only six nurse practitioners, which limits how far the findings can be generalized to the broader NP workforce.
- Participants were recruited exclusively from Western Canada, so the findings may not reflect the experiences of NPs practising in other provinces or health systems.
- With only six participants divided evenly between community and tertiary outpatient care, the number of NPs in any single setting was very small; the authors themselves call for further research on NPs' experiences in community settings, where much of this population's care occurs.
Classroom use
Discussion Questions
- Why might standard oncology performance-status tools such as ECOG or the Karnofsky scale be insufficient for treatment decisions involving patients with a co-occurring neurocognitive disorder?
- How did participants' prior assumptions about patients sometimes conflict with what they learned through direct contact, and what does this suggest about clinical assumption-making generally?
- What made end-of-life treatment decisions particularly ethically challenging for the NPs in this study?
- In what ways did participants describe 'creatively navigating' or working around their healthcare organizations, and what does this reveal about system design for complex older patients?
- What specific relational strategies did NPs use to include patients with cognitive impairment in their own care decisions?
- How might an 'ethics of care' framework change the way a clinician approaches a disagreement with a family about continuing cancer treatment?
- What role did comprehensive geriatric assessment play (or fail to play) in supporting NPs' decision-making, according to the discussion?
- Given that this study involved only six NPs recruited from Western Canada, what cautions should a reader apply before generalizing these findings to other regions or to community-based practice?
- How might the underrepresentation of older adults with cancer in clinical trials contribute to the uncertainty NPs described experiencing?
- If you were designing a policy change for one healthcare organization based on this study, what would you prioritize: scheduling flexibility, geriatric assessment resources, or interdisciplinary role clarity? Why?
Study cards
Flashcards
What population did this study focus on?
Older people living with a neurocognitive disorder (e.g., mild cognitive impairment or dementia) who also have cancer, and the nurse practitioners who make treatment decisions for them.
What qualitative design did the researchers use?
Interpretive description, a practice-oriented approach for generating clinically applicable knowledge.
How many nurse practitioners participated in the study?
Six NPs from Western Canada.
How were participants recruited?
Through purposive sampling via the Canadian Association of Oncology Nurses (CANO).
What two main data collection methods were used?
Semi-structured interviews (42-67 minutes, via Zoom) and reflective journaling by the interviewer.
What analytic method was used to identify themes?
Braun and Clarke's six-step thematic analysis, supported by NVivo 12 software and iterative team discussion.
Name the first of the five themes.
NPs experience uncertainty with treatment decision-making.
Name the second of the five themes.
NPs' knowledge and assumptions about MCI-dementia progression influence their decisions.
Name the third of the five themes.
NPs experience ethical challenges with treatment decision-making, especially near end of life.
Name the fourth of the five themes.
Needing to navigate healthcare organizations influences NPs' decisions.
Name the fifth of the five themes.
NPs foster older persons' and families' participation in decision-making processes.
Why were standard oncology tools like ECOG and Karnofsky insufficient on their own?
They assess physical performance status but do not account for cognitive tolerance for treatment in patients with a co-occurring neurocognitive disorder.
Give an example of an NP 'workaround' described in the study.
One NP scheduled unofficial extended Zoom appointments outside regular clinic hours, and another conducted a facility visit despite being advised against it.
What strategy did NPs use to time appointments effectively for patients with dementia?
They booked appointments during a patient's more reliable cognitive hours, such as mornings or after an afternoon nap, depending on the individual.
How did NPs structure family discussions while keeping the patient central?
They invited each family member to speak in turn while keeping the patient closest to them physically and involved throughout, then asked the patient for their own input.
What framework did the authors propose for navigating end-of-life ethical conflict?
An 'ethics of care' framework emphasizing relationships, context, and compassion.
What did the researchers link NPs' uncertainty to, beyond assessment tools?
The broader underrepresentation of older adults with cancer in clinical trials, which leaves limited evidence for complex cases.
What is one geographic/setting limitation of this study?
Participants were recruited only from Western Canada, and five of six worked primarily in tertiary care rather than community settings.
When was data collected, and what contextual factor might have affected it?
Data were collected in November-December 2022, during a period of pandemic-related healthcare worker burnout.
What did the authors conclude about NPs' role with this population overall?
NPs play a unique and valuable but underrecognized role, navigating a complex web of uncertainty, ethical tension, and system barriers through relational, ethically-grounded decision-making.
Search-ready answers
Frequently asked questions
What is this study about?
It explores how nurse practitioners in Canada experience making treatment decisions for older adults who have both a neurocognitive disorder (like dementia) and cancer.
How many nurse practitioners were interviewed?
Six NPs from Western Canada, recruited through the Canadian Association of Oncology Nurses.
What research method did the study use?
Interpretive description, a qualitative approach that combines semi-structured interviews and reflective journaling to generate practical, clinically relevant knowledge.
What were the main themes found in the study?
Five themes: NP uncertainty in decision-making, the influence of NPs' knowledge and assumptions, ethical challenges (especially near end of life), the need to navigate healthcare organizations, and fostering patient/family participation in decisions.
Why do older adults with dementia and cancer face particular challenges in treatment decisions?
Standard oncology assessment tools do not account for cognitive tolerance for treatment, and this population is underrepresented in cancer clinical trials, leaving limited evidence to guide decisions.
What ethical challenges did nurse practitioners describe?
NPs described moral conflict around treatment futility and end-of-life transitions, particularly when family members' wishes to continue treatment diverged from the NP's clinical judgment.
How did nurse practitioners try to involve patients with cognitive impairment in decisions?
They timed appointments to a patient's best cognitive hours, structured family discussions to keep the patient central, repeated information patiently, and gathered additional details from family members.
What did nurse practitioners do to work around rigid healthcare systems?
Some scheduled unofficial extended virtual appointments, made home or facility visits despite advice against it, and liaised across community and hospital services to get patients the care they needed.
What are the limitations of this study?
The sample was small (six NPs), drawn only from Western Canada, weighted toward tertiary care rather than community settings, and collected during a period of pandemic-related healthcare worker burnout.
What framework do the authors suggest could help NPs with ethical tension near end of life?
An 'ethics of care' framework, which emphasizes relationships, context, and compassion over strictly procedural or biomedical reasoning.