A Qualitative Exploration of Perceived Key Knowledge and Skills in End-of-Life Care in Dementia Patients among Medical,Nursing,and Pharmacy Students

Abstract

Background:

The steady increase in the number of people living and dying with dementia, coupled with the recent focus on quality of care, has highlighted the importance of dementia training for health care professionals. This exploratory study aimed to discover which skills health care students felt were important in providing quality end-of-life care to dementia patients.

Methods:

Ninety-four medicine, nursing, and pharmacy students participated in a larger study using open-ended and closed questions to explore attitudes related to caring for dementia patients at the end of life. This study looks at the student responses to an open-ended question regarding the skills and knowledge they believe are needed to provide end-of-life care to dementia patients. Individual responses were reviewed by the researchers, coded into key issues, and tabulated for frequency of occurrences and group differences.

Results:

Several common issues emerged: knowledge, patience, empathy, understanding, family involvement, compassion, medication knowledge, respect/patient autonomy, communication, quality of life, and patient education. Significant differences were observed among the participant groups on the following issues: Patience and understanding (pharmacy students mentioned these issues less frequently than medical and nursing students), compassion (medical students mentioned this issue more frequently than pharmacy students), and medication knowledge (pharmacy students mentioned this issue more frequently than medical and nursing students).

Conclusions:

Different health care disciplines (in-training) value different skill sets for the provision of dementia care at the end-of-life. As health care education for dementia patients at the end of life is expanded, it will be important to understand which skills both patients and health care students value.

Introduction

The continued increase in the older adult population, coupled with the increased incidence of people living with dementia,¹ has both health care educators and policy makers discussing the quality and quantity of dementia training for health care professionals. Health care is increasingly moving toward team-based, person-centered care, both of which have been shown to improve attitudes toward dementia patients, patient satisfaction, and outcomes.^2,3 Recent literature has demonstrated that palliative care and end-of-life skills can be successfully taught in a team-based manner involving multiple health care disciplines.⁴

Early career professionals across health care disciplines (medical, nursing, pharmacy, social work) report struggling with issues related to dementia and end-of-life care^5–8 and express interest in additional training.^9,10 Medical residents who receive training in palliative and end-of-life care, combined with clinical experiences, report increased confidence and competence in communication skills and in managing end-of-life symptoms.¹¹ Similar to medical residents, less-experienced nurses report that skills training, combined with clinical experience, improves their attitude and their subsequent care for dementia patients.^12–14 Finally, pharmacists are being increasingly called upon to help manage medications for dementia patients at the end of life.^15–17 While most pharmacists express positive attitudes toward caring for this patient population, they also express concern that their dementia and palliative care education is inadequate.^18,19

The care for a patient with dementia is often complex and challenging. Current literature highlights the importance of providing dementia and palliative care learning experiences during the training of health care students,^14,20–23 however, little is known about which skills medical, nursing, and pharmacy students perceive as important components in providing quality end-of-life care to dementia patients. Dementia is a global public health concern, and the exploration of health care student perceptions of key skills necessary to provide care to these patients is a timely and important research question. It is hoped that this exploratory study will improve the understanding of the current quality of geriatric and palliative care training in health care professions and will be used to inform future training decisions.

Methods

Design and setting

This study aimed to discover which skills health care students (defined as someone receiving training to become a physician, nurse, or pharmacist) felt were important in providing quality end-of-life care to dementia patients. It reports findings from a larger study that explored the attitudes of final-year health care students toward dementia patients and evaluated their perceived competence and confidence dealing with biomedical and psychosocial issues within the context of providing of palliative care.²⁴ The data described are from the open-response section of the Attitudes to Dementia and Approaches to End of-Life Care in Dementia survey, which includes demographic data, multiple closed questions, and two open-ended questions. The full questionnaire is described in detail in the parent study.^24,25 In the open-response section of the questionnaire, final-year health care students were asked the following: “In your view, what are the key knowledge and skills required for treating and caring for a patient with dementia in end-of-life care?”

An online anonymous survey was used to explore which skills health care students at the University of Iowa felt were important in providing end-of-life care to dementia patients. Health care students at the University of Iowa Hospitals and Clinics train both at the University (a 762-bed academic, tertiary care, health care center) and in the surrounding rural community. The responses to the open-ended question were organized into general and specific issues to develop an inductive understanding of the phenomena.

Respondents

Final-year students from the University of Iowa Colleges of Medicine, Nursing and Pharmacy were recruited. Student cohort sizes for each discipline were: medicine, 150; nursing, 100; pharmacy, 100. After obtaining approval from the Institutional Review Board and the individual program deans, two recruitment e-mails containing study information and a link to the anonymous online survey were sent. Interested respondents were entered into a drawing for a $10.00 gift card to a local coffee shop. To maintain anonymity, respondents interested in the gift card were sent to a separate survey link at the completion of the survey. The winners were selected randomly.

Data analysis

The content of the qualitative responses were coded into specific issues for each respondent.²⁶ To determine the key issues, two research team members (C.N. and W.R.) independently reviewed all responses and developed a preliminary list of issues that were discussed using examples from the transcripts. After deliberation, a list of the common issues was developed and the responses again reviewed and categorized. The final list was reviewed by the principal investigator (M.W.) and discrepancies were resolved by consensus.

In order to analyze the qualitative data in an objective and quantifiable way,²⁶ results were tabulated to determine the frequency of occurrences for each issue within and across health care student groups. Additional analyses explored group differences on individual issues, using a series of one-way analyses of covariance (ANCOVA) with age, gender, and prior experiences as the covariates and each coded issue as the dependent variable. Post hoc analysis was completed using Tukey's honestly significant difference (HSD). Each team member also read through the interview transcripts to search for illustrative core ideas that demonstrated aspects of each key issue (presented in Table 1).

Table 1.

Direct Quotations from Participants When Asked “What are the Key Knowledge and Skills Required for Treating and Caring for a Patient with Dementia in End-of-Life Care”: Divided into Individual Issues

Issues	Medical students (n=43)	Nursing students (n=26)	Pharmacy students (n=25)
Knowledge of dementia	“Know about how their dementia manifests (i.e., hallucinations, memory issues, etc) so that you can work with those manifestations. Know about any particular triggers that may cause a reaction that is out of the ordinary and/or negative.”	“You need to be able to understand what the disease process is doing to the patient's mind and body.”	“It is important to know the potential adverse effects and interactions related to dementia medications AND what medications may potentially create a clinical picture that looks like dementia.”
Medication knowledge	“Understanding of the effects of medications that might worsen/alleviate dementia symptoms.”	—	“Know which medications are necessary for patient's comfort versus chronic disease states. Prioritization skills when deciding which medications are crucial to be kept on patient's regimen.”
Family education	“Providing structure and support in their daily routines and educational instruction for family members and support systems as to how to cope with and care for their loved one.”	“Sometimes educating family members on why a person with dementia acts the way they do makes a world of difference for them and their experience with the patient, and in turn, helps better the experience of the patient.”	“Counseling the caregivers about dementia medications.”
Patience	“Patience, understanding of the patient's background and prior level of functioning.”	“Understanding the importance of patience and kindness and treating them with the same care and respect as anyone else.”	“Patience, prescription medication knowledge—multiple choices first line and second line, good personality, good communication skills.”
Empathy	“Know that this is a scary and confusing time for the patient and to treat them with as much respect and empathy as possible.”	“Showing empathy. Always listening to their wants and needs. Speaking to them like adults (not like children). Keeping their family and friends around for visits.”	“You need to learn how to empathize with the patient's situation and to be able to help improve their quality of life by talking with them and making sure their medications are all helpful and necessary.”
Compassion	“Compassion, treating the whole person, understanding the patient's (and family's) needs and addressing them.”	“Patience is very important as well as compassion. While they may need to be redirected or prompted more than the average person their emotions are just as important. The patient needs to feel safe.”	“Our interactions with them matter—they might not remember why they are happy or sad, but a positive or negative interaction will often change a patient's mood for the day.”
Understanding	“Understanding likely prognosis for dementia symptoms…Ability to communicate that prognosis to patient and caregivers/family members.”	“I think it is important to understand what makes a patient dealing with dementia happy.”	“Understand and be patient.”
Communication	“Ability to communicate well with the patient and their caregivers/family members to alleviate stress.”	“It is important to learn how to communicate with people with dementia, including ways to prevent or decrease agitation, reorient to the time/place, etc.”	“Good communication skills…to offer the best care.”
Family involvement	“Providing structure and support in their daily routines and educational instruction for family members and support systems as to how to cope with and care for their loved one.”	“It is important to ensure that their loved ones are content with the patient's care, as well as understand what is going on with their care and their situation.”	“Ability to work with the family of your patients to offer the best care.”
Respect/patient autonomy	“Respect not only for the patient but for the family. Say hello to the family. Ask the patient questions. Ask the family how they would like to give the history before automatically assuming it can't come from the patient.”	“Knowing that the person deserves respect and dignity like any other patient. I think it is very beneficial to learn techniques to increase independence and memory function to allow the person as much autonomy as possible.”	“Clear goals of care, taking into account patient/family wishes.”
Quality of life	“Education for the family. Comfort and quality of life.”	“I think you need to have an open mind to care for those with dementia and those at the end of their lives. You have to remember that what is medically recommended may not be in their best interest mentally, and you have to be able to balance the pros and cons of the medical decisions against quality of life in these patients.”	“As a health care member you need to realize at the end of life which medications are important and necessary for the patient. We want to make them comfortable in his/her last few days of life.”

Results

Ninety-four students participated: 43 medical (mean age, 27.2 years; standard deviation [SD]=2.6, 74% female, 29% response rate); 26 nursing (mean age, 22.5 years; SD=2.3, 89% female, 26% response rate); and 25 pharmacy (mean age, 27.8 years; SD=5.7, 80% female, 25% response rate).

Analysis of the data revealed several common issues: knowledge of dementia, medication knowledge, family education, patience, empathy, compassion, understanding, communication, family involvement, respect/patient autonomy, and quality of life. Table 2 illustrates the key issues and frequency of occurrence within and across student groups while Table 1 gives specific examples of each issue.

Table 2.

Coded Issues, Frequency Endorsed (%), and Between-Subjects Effects from ANCOVA

Issues	Medical students (n=43)	Nursing students (n=26)	Pharmacy students (n=25)	Total (n=94)	F	p	Sig. main effects (covaried by age, gender, and experience)
Knowledge of dementia	19 (44%)	7 (27%)	10 (40%)	36 (38%)	0.971	0.383
Medication knowledge	3 (1%)	0 (0%)	16 (64%)	16 (17%)	60.642	0.000	Pharmacy students>medical and nursing students
Family education	2 (4%)	1 (4%)	1 (4%)	4 (4%)	0.124	0.883
Patience	17 (40%)	13 (50%)	3 (12%)	33 (35%)	5.122	0.008	Medical and nursing students>pharmacy students
Empathy	14 (33%)	9 (35%)	3 (12%)	26 (28%)	3.034	0.053
Compassion	10 (23%)	4 (15%)	0 (0%)	14 (15%)	3.434	0.037	Medical students>pharmacy students
Understanding	11 (26%)	10 (39%)	1 (4%)	22 (23%)	3.303	0.041	Medical and nursing students>pharmacy students
Communication	4 (9%)	6 (24%)	2 (8%)	12 (13%)	0.700	0.499
Family involvement	10 (23%)	3 (12%)	5 (20%)	18 (19%)	0.374	0.689
Respect/patient autonomy	5 (12%)	7 (27%)	1 (4%)	13 (14%)	1.490	0.231
Quality of life	5 (12%)	1 (4%)	1 (4%)	7 (7%)	2.016	0.139

ANCOVA, analyses of covariance.

We observed significant differences among the three participant groups on the following issues: medication knowledge [F(2, 93)=60.64, p<0.001], with pharmacy students endorsing knowledge in medications as a key issue more frequently than medical (p<0.001) and nursing students (p<0.001); patience [F(2, 93)=5.12, p=0.008] and understanding [F(2, 93)=3.30, p<0.05], with pharmacy students endorsing these issues less frequently than medical (p<0.05) and nursing students (p<0.01); and compassion [F(2, 93)=3.43, p<0.05], with medical students endorsing this as a key issue more frequently than pharmacy students (p<0.05). Table 2 displays the results of between-subjects effects from ANCOVA analysis.

Discussion

This study explored self-perceived key knowledge and skills in end-of-life care for dementia patients among final year health care students at an academic institution and examined the differential perceptions based on healthcare professions. The entire group identified knowledge, patience, and empathy as key skills needed to care for this challenging population. The difference in education style and focus between the disciplines may explain the breakdown in frequencies. With training typically focused on disease proficiency, it is not surprising that medical students most frequently mentioned disease knowledge as important. Nursing students most frequently mentioned patience and understanding, suggesting that they perceived humanistic characteristics to be the key skills needed for this population; supporting the more psychosocial and humanistic focus of nursing training.^27,28 With training focused on medications, it is not surprising that pharmacy students most frequently mentioned medication knowledge as the key skill.²⁰

This study has limitations. One disadvantage of online-based methodologies is the focus on obtaining a representative sample and adequate response rate sampling issues.²⁹ Additionally, responses from online qualitative data collection may be “dry” because the researcher is unable to ask follow-up questions to expand upon the intended meanings.³⁰ Our overall response rate (27%), while low, is not that dissimilar from other studies conducted with health care professionals in the United States.³¹

Unfortunately, the low response rate likely demonstrates a respondent bias (i.e., students interested in dementia or palliative care were more likely to respond). The low response rate may limit the generalizability of the findings but they still provide valuable exploratory data about student perceptions and needs. In order to improve the response rate an incentive was offered; however, it is not unusual for health care students to receive two to three invitations to participate in online surveys a month and this coupled with their busy course loads likely decreased the response rates.

This study illustrates that different health care specialties value different skill sets for the provision of dementia care at the end-of-life. We believe that all of the skills mentioned play key roles in providing quality care to these patients. It is hoped that by exploring the skills that health care students believe to be important we can provide targeted education in the future. The need for target education is supported by our previous study²⁷ that showed that the health care students who completed the survey often did not feel confident in providing the care that they felt was most important and often felt their education did not train them in the skills they perceived as essential. This highlights an important gap in the training of health care professionals that will be important to study in the future.

Footnotes

Author Disclosure Statement

No competing financial interests exist.

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