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| Journal of the New Zealand Medical Association,
20-January-2012, Vol 125 No 1348
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There were 28,964 deaths registered in New Zealand
in 2009, with 14,480 male and 14,484 female deaths according to Statistics
New Zealand.1
The number of deaths will rise rapidly in the years ahead
with population aging and population growth, so it can be anticipated that many
more people will personally need to use hospice/palliative care services to
assist them when dying and many more people will have family or friends needing
hospice/palliative care services.
Hospice New Zealand is a national organisation that exists
to support member hospices in their work of caring for people who are dying and
their families. Their primary goal is to give voice to the interests, views and
concerns of member hospices. Their work is in keeping with the 2001 New Zealand
Palliative Care Strategy.2 The aim of this
Strategy was to further a systematic and informed approach to the provision and
funding of palliative care services through the implementation of the following
vision:
All people who are dying and
their family/whānau who could benefit from palliative care have timely
access to quality palliative care services that are culturally appropriate and
are provided in a co-ordinated way.
Strategy 6 of that document relates to informing the public
about palliative care services. In particular, it states “Public
information specific to each District Health Board area is necessary to:
Nearly one decade later, it is of
concern that New Zealanders’ knowledge of palliative care and hospice
services has not yet been researched. In New Zealand, hospices are independent
charitable organisations providing care and support free of charge for all who
are dying. This care extends beyond the physical – as it includes social,
emotional and spiritual aspects of each unique person’s life. For the
purposes of this survey the terms hospice and palliative care have been used
interchangeably.
The New Zealand definition of palliative care identifies a
similar aim and includes (as hospice does) the support of the individual’s
family, whānau and other caregivers into
bereavement.3 Awareness of hospice services and
the nature of palliative care may still be low, even among health professions.
For many, hospice is still perceived as a ‘place to
die’ rather than as a philosophy of care and so people may not seek
support from hospices until near the very end of their life. We also do not know
much about public attitudes to death and dying, and the anxiety associated with
them.
Tomas-Sabado and Limonero claim that ‘our attitudes to
death and dying are shaped by many things such as cultural perspectives of
illness and the religious and spiritual beliefs of our family and
community.’4 We do know, from the recent
Australian National Community Education Initiative, that ‘talking about
dying and death is not something that comes naturally to
Australians.’5
Palliative Care Australia, the national peak body for
palliative care has, over the last 13 years, held a National Palliative Care
Awareness Week in an attempt to address a perceived lack of understanding and
preparedness for death in Australia. In the UK, the Dying Matters coalition (www.dyingmatters.org) encourages people
to talk death in general about their wishes towards the end of life in
particular. No similar initiatives are yet available in New Zealand.
MethodUnder the auspices of Hospice New Zealand, the
researchers approached The Nielsen Company, an international market research
company, to conduct a survey. The questions asked were identical to those asked
in similar studies conducted in a number of other countries (with minor
modification for our on-line methodology), as there is a plan to compare
research findings. Ethics approval was obtained from the Northern X Regional
Ethics Committee of the New Zealand Health and Disabilities Ethics Committee
(MEC/10/27/EXP).
The survey components reported here comprised:
Data were collected via an online
survey using the Nielsen Your Voice panel, an online community designed
to provide members with a forum to voice their opinions on a number of matters
(www.yourvoice.net.nz).
The survey commenced on 27 July 2010 and continued
until 2 August 2010 when the online tool was taken down off the Internet. The
survey was expected to take under 11 minutes to complete, and a representative
population-based sample of 1011 was anticipated and obtained. Invitations to
panellists (18 or over) were sent via e-mail which contained a link to the
survey. A sampling matrix was used to ensure that the number of surveys sent to
different age groups, regions, and gender was in line with the makeup of the New
Zealand (18+) population.
The results were also weighted by age, gender and
region to account for any minor imbalances the sampling matrix was unable to
account for.
ResultsRespondents were distributed throughout the country; 48%
were male and 52% female. The age and gender of participants broadly represent
New Zealand’s population (Table 1) with an over-representation of NZ
European responders.
Table 1. Population sample characteristics
* www.socialreport.msd.govt.nz;
† Some identified 2 nationalities.
Awareness of hospice activitiesWhere differences between subgroups and the total sample are
identified here these are all statistically different at 95% level.
Figure 1 demonstrates the New Zealand public’s
awareness of hospice and hospice activities. Only half of the respondents agreed
that a hospice is a place where people go to die, while two-thirds agreed or
strongly agreed that hospice staff help coordinate care across health and
support services.
Just over a third of respondents (35%) correctly named their
local hospice. Many respondents simply assumed that their local hospital was
where their local hospice was located, but others thought it was in retirement
villages or even at the Ronald McDonald House.
 People aged 50 and over had greater confidence that hospice
staff coordinate care between a number of different health and support services
(71% agreeing cf. 63% average for all respondents). Respondents aged 50 and
older also illustrated more accurate perceptions of hospices, as they were more
likely to strongly disagree with the following statements:
In comparison, people under the age
of 30 were the least likely to be accurate in their responses to the above three
statements.
Experience of palliative care—Figure
2 illustrates that around three in ten respondents indicated they had had
personal experience with palliative care services. Experience increased with
age, with people aged 50 or older twice as likely as those under the age of 30
to have had experience.
Figure 2. Personal experience of palliative
care services
 Of the two main types of community palliative or hospice
care services available, inpatient care was the most likely service that New
Zealanders reported experience with. However, 1 in 10 respondents did not know
what type of palliative care service they had been exposed to, and this gap was
more likely to be the case for those under the age of 30 (24% cf. 9% average for
all respondents).
Understanding of palliative careFigure 3 reveals that the respondents as a whole were most
in agreement with the statement “palliative care staff provide comfort to
people with terminal illness,” followed closely by “palliative care
is an essential part of medical care services” and “palliative care
staff help family members care for palliative care patients.”
Differences by age—Age was again
found to be a factor in public support for palliative care, as people aged 50 or
over placed more value on palliative care, with half (51%) strongly agreeing
that it is an essential part of medical care services as compared to 41% for all
respondents. This older age group also had more accurate perceptions of
palliative care as evidenced by higher strongly agree scores for the
following statements:
Figure 3. Opinions about palliative care
statements (part 1)
 Opinions about palliative careThe majority of respondents recognised accurate inaccurate
statements about palliative care (see Figure 4), but more than half were unsure
about spiritual care services being provided in hospices.
Differences by age—Age was a factor
in knowledge of palliative care services, as people aged 50 or over were more
likely to know that palliative care staff care for patients’ social needs
(15% cf. 10% average for all respondents). In addition, people aged 50 or over
were more likely to disagree or strongly disagree with three inaccurate
statements:
Those under the age of 30 were again
more likely to be uncertain or not have an opinion about any of the statements
about palliative care.
Figure 4. Opinions about palliative care
statements (part 2)
 Differences by gender—Females were
revealed as more informed about hospice, as shown by three key findings:
There was also a clear gender difference in
perceptions of palliative care with females more likely than males to agree or
disagree with all statements depending on their accuracy.
Personal experience with death of a family member or close friendTo provide context for this section we evaluated
respondents’ personal experience with death, their current state of
health, importance of religion and religious group they identify with,
importance of spirituality, and level of connection with family.
Around 8 in every 10 respondents have personally experienced
the death of a close friend or family member (we take this to mean have been
bereaved rather than a more literal experience of being at the bedside).
Irrespective of age, personal experience of death is very high, with seven in
every ten respondents under the age of 30 also having personally experienced the
death of a close friend or relative.
Figure 5. Personal experiences of death (part
1)
 Figure 6 illustrates that for the majority of respondents
the death of a close friend or relative occurred more than 2 years ago.
Figure 6. Personal experiences of death (part
2)
 Religion was considered important (both high and very high
importance) by only two in every 10 respondents (Figure 7). In comparison, one
third of respondents (34%) considered spirituality to be of high or very high
importance in their life.
Figure 7. Importance of religion and
spirituality
 Differences by age—Although people
aged in their thirties were more likely to say religion was of very low
importance (41% cf. 33%), the importance of spirituality was consistent across
age groups.
Differences by gender—The only
difference in importance of spirituality was the greater likelihood for females
to say it was of high or very high importance in their life (40% cf. 28% for
males). In terms of strength of connection with family, just over three quarters
believe they have a strong or very strong connection with their own family.
DiscussionThis research revealed that although New Zealanders
generally understand the concept of palliative care, 65% of respondents were
unable to name their local hospice. Despite high levels of awareness that
hospice support is designed for both patients and families, there were lower
levels of understanding of the psychosocial and spiritual services available in
hospices. Not surprisingly, people under the age of 30 were commonly the most
unaware of hospice services. However, 82% of all respondents believe palliative
care is an essential health service.
These findings reflect the experiences and expectations of a
society where palliative care has been a part of some districts’ health
services for over 30 years. It is possible that some respondents had experience
of hospice that did not include all the services that could be available, so
skewing their responses. For example, not all hospices have care coordination or
spiritual care available specifically.
One of the other findings that needs further attention is
that a significant number (34%) of New Zealanders consider spirituality to be of
high or very high importance in their life. Given that the survey also
identifies that a majority of people do not think, or were uncertain, that
palliative care staff address spiritual needs, this is something that providers
of care may need to attend to.
It is important for the achievement of Strategic goal 6 of
the NZ Palliative Care Strategy that education of the public continues so that
the true nature of hospice and palliative care services is understood and sought
when required.2
Competing interests: None
declared.
Author information: Rod MacLeod, Honorary
Clinical Professor, Department of General Practice and Primary Health Care,
School of Population Health, University of Auckland, Auckland; Rachel Thompson,
Funding & Communications Advisor, Hospice New Zealand, Wellington; John W
Fisher, Honorary Senior Fellow, School of Rural Health, Faculty of Medicine,
University of Melbourne, Melbourne, Australia; Kristine Mayo, Associate
Director, Client Service, The Nielsen Company, Wellington; Nathan Newman, Senior
Client Service Executive, The Nielsen Company, Wellington; Donna M Wilson,
Professor – Faculty of Nursing, University of Alberta, Edmonton,
Canada
Acknowledgements: The authors gratefully
acknowledge the support of Hospice New Zealand in facilitating this project as
well as Mundipharma NZ Ltd for funding the research.
Correspondence: Rod MacLeod, Department of
General Practice and Primary Health Care, School of Population Health,
University of Auckland, Auckland, New Zealand. Fax: +64 (0)9 3737624; email: rd.macleod@auckland.ac.nz
References:
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