family caregiver views on patient-centred care at the end of life

EMP IR ICAL STUD IES doi: 10.1111/j.1471-6712.2011.00956.x

Family caregiver views on patient-centred care at the end of life

Kevin Brazil PhD (Professor)1,2,3, Daryl Bainbridge PhD (Senior Research Coordinator)1, Jenny Ploeg PhD

(Associate Professor)4, Paul Krueger PhD (Associate Professor)5, Alan Taniguchi MD (Assistant Clinical Professor)2

and Denise Marshall MD (Associate Professor)2

1Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada, 2Division of Palliative Care,

Department of Family Medicine, McMaster University, Hamilton, Ontario, Canada, 3St. Joseph’s Health System Research Network, Hamilton,

Ontario, Canada, 4School of Nursing, McMaster University, Hamilton, Ontario, Canada and 5Department of Family and Community Medicine,

University of Toronto, Toronto, Ontario, Canada

Scand J Caring Sci; 2011

Family caregiver views on patient-centred care at the

end of life

Aim: The purpose of this study was to evaluate the patient-

centredness of community palliative care from the per-

spective of family members who were responsible for the

care of a terminally ill family member.

Method: A survey questionnaire was mailed to families of a

deceased family member who had been designated as

palliative and had received formal home care services in

the central west region of the Province of Ontario, Canada.

Respondents reported on service use in the last four weeks

of life; the Client-Centred Care Questionnaire (CCCQ) was

used to evaluate the extent to which care was patient-

centred. The accessibility instrument was used to assess

respondent perception of access to care. Descriptive and

inferential statistics were used for data analyses.

Results: Of the 243 potential participants, 111 (46.0%)

family caregivers completed the survey questionnaire. On

average, respondents reported that they used five different

services during the last four weeks of the care recipient’s

life. When asked about programme accessibility, care was

also perceived as largely accessible and responsive to

patients’ changing needs (M = 4.3 (SD = 1.04)]. Most

respondents also reported that they knew what service

provider to contact if they experienced any problems

concerning the care of their family member. However, this

service provider was not consistent among respondents.

Most respondents were relatively positive about the

patient-centred care they received. There were however

considerable differences between some items on the

CCCQ. Respondents tended to provide more negative

ratings concerning practical arrangement and the organi-

zation of care: who was coming, how often and when.

They also rated more negatively the observation that

service providers were quick to say something was

possible when it was not the case. Bivariate analyses found

no significant differences in CCCQ or accessibility domain

scores by caregiver age, care recipient age, income,

education and caregiver sex.

Conclusions: Patient-centred care represents a service attri-

bute that should be recognized as an important outcome to

assess the quality of service delivery. This study demon-

strates how this attribute can be evaluated in the provision

of care.

Keywords: patient-centred care, palliative care, community,

access to care, caregivers.

Submitted 27 October 2010, Accepted 27 October 2011

Introduction

Patient-centred care has become a prevailing principle in

current health care policy (1–3). Despite extensive dis-

cussions concerning the principle of patient-centred care,

there is little consensus regarding the precise meaning of

the expression. A review of the literature reveals that the

expressions ‘patient-centred care’ and ‘client-centred care’

are often used to describe the same concept. In this paper,

we have chosen to use the term ‘patient-centred care’ to

describe how health care services can be provided by

health care professionals in a manner that works best for

individuals who are the recipients of care. Patient-centred

care has been defined as ‘Health care that establishes a

partnership among practitioners, patients, and their fami-

lies (when appropriate) to ensure that decisions respect

patients’ wants, needs, and preferences and that patients

have the education and support they need to make deci-

sions and participate in their own care’ (4: 113). Stewart

(5) provided a more detailed description of patient-centred

Correspondence to:

Kevin Brazil, 105 Main Street, Level P1, Hamilton, Ontario, L8N

1G6, Canada.

E-mail: [email protected]

� 2011 The Authors

Scandinavian Journal of Caring Sciences � 2011 Nordic College of Caring Science 1

care, identifying six related components: (i) exploring both

the disease and the illness experience; (ii) understanding

the whole person; (iii) finding common ground regarding

management; (iv) incorporating prevention and health

promotion; (v) enhancing the provider–patient relation-

ship; and (vi) ‘being realistic’ about personal limitations

and issues such as the availability of time and resources.

More recently, a systematic review by Shaller (6) identified

the core elements of patient-centred care to include: (i)

education and shared knowledge in terms of timely and

complete information on patient prognosis, progress

and disease process; (ii) appropriate involvement of family

and friends in decision-making and information giving;

(iii) the sense of inter-provider collaboration and team

management; (iv) sensitivity to nonmedical and spiritual

dimensions of care; and (v) respect for patient needs and

preferences in care.

How patient-centred care is defined and valued often

depends on the roles people have in the health care

encounter. Health care providers and patients can hold

different opinions about which features of patient-centred

care are most important. For example, patients may be

more attentive to the extent to which health care providers

address patient concerns, whereas health care providers

may be more focused on adherence to standards of care.

However defined patient-centred care is increasingly being

advocated where the idea is held that the patients should

be the focal point from which decisions regarding their

care should be made. Despite efforts to improve patient-

centred care, the quality of patient–clinician relationships,

access, and continuity to care remain profound challenges.

The research evidence shows that clinicians do not con-

sistently address patient concerns and often do not share

management options with patients (7, 8). Integrating pa-

tient-centred care into practice has been identified as a

priority by organizations around the world where the

health care delivery must respond to the patient rather

than the patient being required to adapt to the health care

system (1–3, 9).

Community palliative care has been characterized as

suboptimal in the provision of patient-centred care owing

largely to the complexity of integrating multiple health

care professionals from various programmes (10). Care-

giving for people who are dying weighs heavily on the

psychological, physical and financial well-being of family

caregivers (11–13). Providing the necessary complement of

professional services to palliative care patients and their

families in the community is a challenge in the current

health care environment. Community-based health ser-

vices, such as those for palliative care in the home, are

often highly fragmented owing to a combination of diverse

professional groups, organizations and approaches to care

(14, 15). Community care is characterized by complex

interorganizational relationships where a palliative

patient’s care might be managed by multiple programmes

at any given point in time. Services can be delivered by a

range of generalist programmes that lack specialization in

the specific needs of a palliative patient (14). A consider-

able body of evidence shows the difficulty in realizing

dying peoples’ needs for treatment and social support.

It is important that health care services are evaluated

from the perspectives of patients and their family members

to improve the provision of relevant and appropriate

patient-centred care provided by health service providers.

The purpose of this study was to evaluate the patient-

centredness of community palliative care from the per-

spective of family members who were responsible for the

care of a terminally ill family member.

Methodology

Study design and population

A survey questionnaire was mailed to families of a

deceased family member who had been designated as

palliative and had received formal home care services by a

Community Care Access Centre (CCAC). In the Province

of Ontario, CCACs are publicly funded agencies that are

mandated to provide a central point of access to commu-

nity care services. The coordination of services is carried

out by case managers employed by the CCACs. Case

managers are responsible for assessing client eligibility for

in-home visiting health and support services. Case man-

agers develop, monitor and adjust service plans to meet the

needs of their clients. Visiting services that can be provided

in the home include nursing, social work, personal sup-

port, housekeeping, occupational therapy, physiotherapy,

dietetic services and the provision of medical supplies and

equipment. The CCAC mandate is to ensure fair and

equitable access to services across the spectrum of disease

and illness within a geographic region. The survey group

represented both urban and rural areas within south-

central Ontario which comprised the catchment area of the

participating CCAC.

Procedure

Family caregivers of those clients who had received home

care services from the CCAC (i.e. palliative care patients

who have recently received CCAC services and now

deceased) were identified through an administrative

review of client records. The CCAC mailed out the

Caregiver Survey to eligible caregivers with the Letter of

Invitation and Study Information Sheet. Those wishing to

participate completed the provided survey and returned it

to the research team by mail. The survey was administered

in February 2010. No follow-up occurred to nonrespond-

ers. The Ethics review Board of the Faculty of Health

Science at McMaster University in Hamilton, Ontario,

Canada, approved the study.


Scandinavian Journal of Caring Sciences � 2011 Nordic College of Caring Science

2 K. Brazil et al.

Data collection

Demographic information on the family caregiver respon-

dent and care recipient was collected. The Client-Centred

Care Questionnaire (CCCQ) (16) was used to obtain care-

givers’ perceptions of the patient-centredness of the com-

munity care provided to the terminally ill family member.

The CCCQ covers key patient values regarding patient-

centred care, based on a qualitative study into the patient

perspective on home nursing care. This instrument

contained 15 items, each assessed on five-point Likert scale

(1 – Strongly disagree, 2 – Disagree to some extent, 3 –

Undecided, 4 – Agree to some extent and 5 – Strongly

agree), with higher scores indicating higher levels of

perceived patient-centred care. Good internal consistency

is reported for the CCCQ (a = 0.94 Patient-centred Medicine).

Evidence of the instrument’s construct validity has been

provided by correlation with care recipients’ overall satis-

faction with services received (16). To catalogue service

use, the investigators developed a list of 11 services that

could be received at home. Respondents also had the option

to identify services that were not included in the list. Family

members were asked to record service use during the four-

week period prior to the death of the care recipient.

A measure of programme accessibility was used to assess

perceptions of service access (17). This instrument con-

sisted of three items: (i) When there is a change in (care

recipient’s) needs, we are able to receive assistance right

away; (ii) When new services are needed, they are easy to

obtain; and (iii) If there is an emergency, it is not difficult

to obtain the services needed. Each item was assessed on

a five-point Likert scale (same as previously indicated

for the CCCQ), with higher scores indicating higher levels

of perceived access to services (internal consistency, a =

0.77), (16). Respondents were also asked whether they

knew what health care provider to contact if they had any

problems concerning the care of their family member and

whether they experienced problems getting help from a

health care provider.

Data analysis

Means (standard deviations) and frequencies were used to

describe caregiver and care recipient characteristics. Fre-

quencies were used to describe caregiver reports on ser-

vices used. In the case of a negatively formulated question

on the CCCQ (item 7), the item coding was inverted.

Descriptive analyses were conducted on all responses (i.e.

means, standard deviations, frequencies). Bivariate analy-

ses were performed between caregiver/recipient demo-

graphics and survey summary scores using an analysis of

variance for categorical data and Pearson’s correlation for

continuous data. SPSS (version 18.0.0 for Windows; SPSS

Inc., Chicago, IL, USA) was used for the statistical com-

putations.

Results

Characteristics of care recipients and caregivers

A sample of 262 potential participants was identified as

eligible to participate in the study. Nineteen mailed surveys

were returned by the postal services indicating the

potential participant no longer resided at the mailing

address thus generating an adjusted survey sample of 243.

The overall response rate to the one-time postal survey

was 111 (46.0%). The average number of weeks since the

death of the care recipient was 36.9 weeks. The average

age of care recipients at the time of death was 71 years

(SD = 13.0) while it was 61 years (SD = 13.5) for family

caregivers. The primary diagnosis for the care recipient was

cancer (85.6%). Most respondents reported that home was

the place of death for the care recipient (80.9%). Other

characteristics of the study group are shown in Table 1.

Service use and perceptions of access to care

Table 2 shows community services used during the four

weeks prior to the death of the care recipient. The most

frequently used services included visiting home nurses

(89.2%), family physicians (69.4%) and personal support

workers (64.0%). On average, respondents reported that

they used five services during the last four weeks of

the care recipient’s life. When asked about programme

accessibility, care was also perceived as largely accessible

and responsive to patients’ changing needs [M = 4.3 (SD =

1.04)]. Most respondents also reported that they knew

what service provider to contact if they experienced any

problems concerning the care of their family member.

However, this service provider was not consistent among

respondents, who reported a range of providers including

physicians, visiting home nurses, case mangers, and in one

instance a personal support worker. Nearly one quarter of

respondents (23.0%) reported that they experienced dif-

ficulties in getting help when needed for the care recipient.

Common examples provided by respondents included

difficulty in accessing needed care outside of working

hours (e.g. 09:00–17:00), inappropriate use of the emer-

gency room and lack of timely response from some

services.

Table 3 shows that most respondents were relatively

positive about the patient-centred care they received.

There were however considerable differences between

some items. Respondents tended to provide more negative

ratings concerning practical arrangement and the organi-

zation of care: who was coming, how often and when.

They also rated more negatively the observation that ser-

vice providers were quick to say something was possible

when it was not the case. Respondents were most positive

about service providers being responsive to their wishes

and desires. The highest scores were given to ‘I can tell that



Patient-centred care at the end of life 3

the carers take my personal wishes into account’, ‘I’m

given enough opportunity to do what I am capable of

doing myself’ and ‘I can tell that the carers really listen

to me’. Bivariate analyses found no significant differences

in CCCQ or accessibility domain scores by caregiver

age, care recipient age, income, education and caregiver

sex.

Discussion

The findings of this study further our understanding on the

experience of patient-centred care in the provision of

community palliative care. Although most respondents

reported experiencing patient-centred care, variation in

the experience was noted on the CCCQ instrument.

Respondents were most positive about service providers

being responsive to their wishes and desires yet more

negative ratings were given concerning practical arrange-

ment and the organization of care (e.g. who was coming,

how often and when). They also rated more negatively the

observation that service providers were quick to say

something was possible when it was not the case. Similar

findings on perceptions of patient-centred care have been

reported in two previous Dutch studies that have used the

CCCQ (16, 18). This perception of patient-centred care

may be indicative of the influence service providers have

within their scope of practice. In patient–provider

transactions, respondents felt two essential elements of

patient-centred care; effective communication between

the provider and patient and a shared decision-making

process. Effective communication includes an under-

standing of the patient’s life and how that contributes to

their care, and a clear explanation to the patient of the

issues. Effective communication also entails respect for

the patient. In our study, most respondents reported the

experience of effective communication with their care

providers.

Shared decision-making relates to decisions about

treatment and ongoing management. This aspect of

patient-centred care was lacking for these respondents

who reported concerns on having influence concerning

the delivery of care. This finding reveals limits to the

application of a patient-centred approach in the provision

of community palliative care. A well-designed support and

delivery system is essential if care is going to reliably and

consistently respond to patients’ needs and priorities.

A requirement to deliver a patient-centred system is to

redesign service systems to focus on the patient. The

chronic care model is an example of an evidence-based

system approach that places the patient in the centre of

care (19). The chronic care model has been described as

including six inter-related elements: community resources

and policies, health care organization, self-management

support, delivery system design, decision support and

clinical information systems (20). The evidence indicates

that the features of the model can be implemented in ways

that support improved patient-centred care.

Table 1 Characteristics of the study population (N = 111)

Characteristics No. (%)

Care receiver

Age (years): M (SD) 71 (13.0)

Diagnoses

Cancer 95 (85.6)

Other 16 (14.4)

Place of death

Home 89 (80.9)

Hospital 6 (5.5)

Hospice 13 (11.8)

Other 2 (1.8)

Family caregiver

Relationship

Spouse 71 (64.6)

Sibling 23 (20.9)

Parent 10 (9.1)

Extended family 6 (5.4)

Sex

Female 77 (72.0)

Male 30 (28.0)

Age (years): M (SD) 61 (13.5)

Annual family income: n (%)a

$0–$29 000 11 (13.8)

$30 000–$39 000 10 (12.5)

$40 000–$49 000 8 (10.0)

$50 000–$59 000 13 (16.2)

$60 000–$69 000 2 (2.5)

$70 000+ 36 (45.0)

Education: n (%)

Elementary completed 22 (21.2)

High school completed 32 (30.8)

College completed 25 (24.0)

University completed 25 (24.0)

N, varies owing to missing data.aCanadian dollars.

Table 2 Service use by care recipient (N = 111)

Services No. (%)

In-home nursing care 99 (89.2)

Physician – family 77 (69.4)

Case manager 75 (67.6)

Personal support worker 71 (64.0)

Pharmacist 53 (47.7)

Religious support 45 (40.5)

Physician – palliative care 43 (38.7)

Nurse practitioner 28 (25.2)

Occupational therapy 26 (23.4)

Social worker 24 (21.6)

Physiotherapy 10 (9.0)

Speech therapy 1 (0.9)



4 K. Brazil et al.

While this study offers interesting insights into the

family caregiver’s perceptions of patient-centred care,

limitations of the study require mention. The participa-

tion rate was relatively low raising some question on the

characteristics of the nonrespondents and the uncertain

generalizability of the findings. As well, these respon-

dents may not be representative of the general provincial

(Ontario) or national populations. While the sample was

similar with respect to education level (24.0% completed

university compared with 24.6% in Ontario and 22.6%

in Canada) (21), family caregivers had much higher

incomes than did the general population [45.0% with

incomes higher than CAD$70 000 compared with 11.7%

in Ontario and 9.7% in Canada (22)]. Given their higher

income, it is possible that this sample of caregivers

provided more positive ratings than would be given by

the general population as their income may offset or

diminish the potential of financial burden, thus lessening

their overall stress. It should also be noted that within

the responding sample, the number of individuals who

died at home (80.9%) was much higher than national

statistics which sets the percentage of home deaths at

approximately 30% (23). This bias in home deaths

among our respondents is most likely a reflection of

using CCAC administrative databases where a patient

death is recorded only when they are in receipt of care.

Including a greater proportion of individuals who died in

hospital settings may have introduced greater variability

in family carers’ perceptions of patient-centred care.

A third factor that may have influenced respondent

appraisal of patient-centred care may have been the

elapsed time between when the respondent was actively

caregiving and when they completed the survey.

However, previous research completed by the author

revealed that caregiver’s perceptions on the quality of

care provided to care recipients at the end of life did not

change from when they were actively caregiving to up

to six months in bereavement (24).

This study also raises questions on how to assess

family perceptions of care. A quantitative approach, as

employed in this study, can overlook the complexity of

the family experience of care. Researchers and service

providers should consider multiple strategies to assess the

patient/family experience of care. This may include

qualitative strategies, such as in-depth interviews or

focus groups.

Despite the noted limitations, the study findings are

important as a user’s account on the provision of

patient-centred palliative care in the community. This

study corroborates what has been reported elsewhere

that individuals make a distinction on the interpersonal

and system aspects of patient-centred care (15, 18). From

a service provision perspective, this finding highlights

that provider education and support are not sufficient to

integrate patient-centred care into practice. Reform of

the service delivery system is a necessary requirement,

particularly in-home nursing care as this service was

used by nearly 90% of the respondents, for example,

instituting a process to incorporate partnerships and

shared decision-making between clients, family caregiv-

ers and in-home nurses during daily care activities as

suggested by Kvale et al. (8). This would be a simple

measure to integrate into nursing practice but one that

could greatly improve the client and caregivers’

satisfaction with the care they receive. Patient-centred

care represents a service attribute that should be recog-

nized as an important outcome to assess the quality of

service delivery. As service delivery systems are reformed

and patient-centred care integrated into practice, client

and family caregiver’s satisfaction must be assessed to

ensure their needs are being met. This study demon-

strates how this attribute can be evaluated in the

Table 3 Item responses on the Client-Centred Care Questionnaire

(N = 111)a

Items Mean (SD)

1. I can tell that the carers take my personal

wishes into account

4.65 (0.77)

2. I can tell that the carers really listen to me 4.53 (0.89)

3. I can tell that the carers take into account

what I tell them

4.55 (0.88)

4. I get enough opportunity to say what kind of

care I need

4.51 (0.88)

5. I can tell that the carers respect my decision

even though I disagree with them

4.23 (0.96)

6. In my opinion the carers are clear about what

care they are able and allowed to provide

4.63 (0.89)

7. In my opinion the carers are sometimes too

quick to say that something is not possible

3.76 (1.36)

8. I’m given enough opportunity to use my own

expertise and experience with respect to the

care I need

4.50 (0.890)

9. I’m given enough opportunity to do what I am

capable of doing myself

4.72 (0.74)

10. I’m given enough opportunity to help decide

on the kind of care I receive

4.46 (0.96)


on how often I receive care

4.15 (1.30)


on how the care is given

4.29 (1.16)

13. I have a say in deciding on when carers come

to help me

4.15 (1.27)

14. In my opinion, I am consulted sufficiently on

who provides the care

4.17 (1.24)

15. I’m given enough opportunity to arrange and

organize the care provided myself

4.21 (1.25)

aN, varies owing to missing data (111–107); The questions were

answered using a five-point Likert scale: 1 – Strongly disagree,

2 – Disagree to some extent, 3 – Undecided, 4 – Agree to some

extent, and 5 – Strongly agree.



Patient-centred care at the end of life 5

provision of care. We suggest both future studies and

in practice by carers to evaluate their clients’ needs

and make adjustments to care being provided to the

client.

Acknowledgements

This study was funded by the We Care Foundation.

Author contributions

Kevin Brazil and Daryl Bainbridge designed, implemented

the study and analysed the results. Kevin Brazil and Daryl

Bainbridge drafted the manuscript. Jenny Ploeg, Paul

Krueger, Alan Taniguchi and Denise Marshall reviewed

the manuscript critically for intellectual content. All

authors read and approved the final manuscript.

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family caregiver views on patient-centred care at the end of life

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