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| Journal of the New Zealand Medical Association,
16-September-2005, Vol 118 No 1222
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Access to palliative care for people with motor neurone
disease in New Zealand
Christine McKenna, Rod MacLeod
Motor neurone disease (MND) is a rare neurodegenerative
disease which occurs in about 1–3 people per 100,000 population per year;
it has a prevalence of about 5–9 per 100,000 (depending on the survival of
those affected). The New Zealand Palliative Care Strategy1 states that the
palliative care needs of people with conditions such as motor neurone disease
need to be recognised. (In this paper, the terms MND and amyotrophic lateral
sclerosis [ALS] will be used synonymously.)
The care of people with MND is described by a number of
writers as palliative from the time of diagnosis, notwithstanding that some
treatment options, which may delay the progression of the disease but are not
curative are now available.2–6
The literature identifies significant concerns about symptom
management in MND, especially in the terminal phase,4,5,7 that almost all
symptoms in MND/ALS are amenable to palliation8 and that hospices may be
underutilised in the care of people suffering from MND.9
Furthermore, there is a high level of commonality of
symptoms experienced by people with MND and people with a wide variety of
cancers, with whom palliative care professionals are generally much more
familiar,7,10–15 and hence there is transferability of knowledge and
skills. However, O’Brien et al cite the examination of a sample of
patients referred to a hospice which found that whereas a high proportion of
patients with cancer were referred specifically for symptom control only 15% of
admissions of people with MND were referred for symptom control, despite the
fact that they all suffered multiple symptoms (Table 1).11
A study of respite admissions to hospice for people with
MND10 found that the median number of problems identified per patient was 10,
and that 81% of respite admissions resulted in a change of medications.
Table 1. Comparison of cancer patients’ symptoms
versus motor neurone disease patients’ symptoms (on their admission to a
hospice)
Source:
O’Brien et al11; PwMND=people with motor neurone disease
In 2000, an investigation of the involvement of specialist
palliative care services in supporting people with MND in the UK showed variable
involvement, with many services only involved in providing respite and terminal
care.16 The suggestion is made that early involvement is advantageous, as there
is the opportunity for easier communication with the patient and therefore to
obtain a clearer understanding of the patient’s views on their care. The
potential for late involvement to adversely affect communication and end-of-life
care is reflected in the literature,7,8,17 and in anecdotes from some palliative
care services and people with MND.
MethodsThe survey was designed and presented to hospices and
palliative care services who were listed in the Hospice New Zealand Directory
(N=41) in March 2004. This survey was based on unpublished work undertaken on
behalf of the Motor Neurone Disease Association of New Zealand in 2001 to enable
comparisons over time. A reminder was sent to the services that had not
responded in April 2004. Thirty-five services returned completed surveys (85%
response rate).
ResultsThe survey asked for a range of qualitative and quantitative
information. To ascertain whether the level of experience and the issues
identified were related to the size of the service, results were analysed by the
number of new patients seen in 2003.
The following groupings reflected the number of new patients
the service had seen in 2003 (Tables 2 and 3).
Table 2. Size of New Zealand hospice and palliative
care services in 2003
Table 3. Proportion of new patients with motor neurone
disease in New Zealand hospice and palliative care services in 2003
At the time of the survey, palliative care services were
supporting 38 people with motor neurone disease (it is estimated that at any
given time there are likely to be 250–300 people in New Zealand living
with MND). These figures also suggest that at the time of the survey
approximately 12–15% of people in New Zealand with MND were receiving
support from palliative care services.
Every service that responded to the survey indicated that
they offer care and support to people with MND—a small number of these
services indicated that this would largely be confined to support in the
community at the terminal stage only.
Services were asked to identify circumstances under which
they would not provide care for people with MND. Four services identified that
their service contract or the definition of palliative care as being for the
last year of life was a barrier, one service identified issues around bed
availability (particularly for respite care), and one service expressed concern
about long-term inpatient care.
Both the numbers and the percentage of services willing to
offer each form of support have increased since 2001. At every point from
diagnosis to terminal care, hospices indicated a higher level of willingness to
accept referrals of people with MND than in 2001, and that their willingness to
accept referrals was greater than the level of referrals they actually received.
Additional questions in the 2004 survey identified that services offered
increased support (compared with 2001) for decision-making, advice, family/carer
support, and bereavement support. Moreover, the data suggest that there was an
increased level of involvement at every stage and in all aspects of care.
Respondents identified other challenges and issues which are
annotated in Table 4 below.
Table 4. Other challenges and issues faced by
respondents to the survey
StrategiesThree strategies for improving access and care for people
with MND were identified by palliative care services responding to the
survey:
Earlier
referral—Earlier referral is needed for the development of a
relationship of trust while communication is generally easier. However, for some
people, referral ‘too early’ can cause resistance to the concept of
hospice.
Only one service has established guidelines for referrals in
the form of information about its services for the person with MND and their
family. The Palliative Care Strategy recommends that the introduction of
palliative care or referral of a person to palliative care services should be
guided by referral protocols. The development of these may be even more
important in the case of MND because of greater issues around knowledge,
familiarity, and confidence. Such guidelines have been developed in the United
States by the American Academy of Neurology in their document reviewing the
evidence base of the major management issues in patients with MND,18 but the
focus is largely on changing from working to maximise function to providing
terminal care.
If the philosophy of palliative care is to assist people to
have the best possible quality of life or to ‘make the most of
life,’ earlier involvement is needed to achieve this objective, as well as
to establish a relationship while communication is easier.
A 2000 study19 found that quality of life, as assessed by
the person with MND, does not correlate with measures of strength and physical
function, but appears to depend most on psychosocial and spiritual or
existential factors—things that are very much within the ambit of
palliative care.
Advisory
systems—Advisory systems and shared care are supported by
Dharmasena and Forbes20 along with the suggestion that training schemes in
palliative medicine include opportunities to gain experience in a variety of
non-malignant conditions, such as MND.
No single group of health professionals has all the
knowledge and skills required to support people with MND. A survey undertaken in
1995 of health professionals in the Wellington region aimed at identifying the
responses of health professionals to working with people with MND and multiple
sclerosis (MS)21 found that those health professionals were significantly more
negative about MND than MS in terms of the amount they felt able to offer
patients and in their confidence in managing people with motor neurone disease.
They also felt generally less able to convey hope to people
with motor neurone disease. The main reasons expressed for difficulty in
conveying hope was the fact that MND is incurable, the inevitable and rapid
progression of the disease, the high level of disability, and issues of
identification with the person with motor neurone disease.
From this current survey there appears to be an increase in
experience particularly in services that have dealt with a significant number of
people with MND. Health professionals also identified a range of strategies that
support them in working with people with MND. At the top of this list were
strategies around supportive and well coordinated teamwork. This teamwork needs
to be both within the palliative care service, and with other providers.
Shared
care—While working with other providers poses some challenges,
bringing together the range of skills required is likely to reduce the stress on
health professionals and provide learning opportunities for all involved,
particularly for hospice staff in relation to communication difficulties and for
community teams in issues around dying. The involvement of hospice services
should be complementary to the roles of the health professionals who have built
relationships with people with MND both in hospitals and in the community, and
not seen as a replacement for them.
An approach to the care of people with MND, adapted from the
work of Mary Harmer from Te Omanga Hospice and Louise Rees, the Wellington MND
Association Field Worker, which provides continuity is set out schematically in
Figure 1.
Figure 1 illustrates the journey of the person with MND and
their family/carer, and how it is proposed that care might be delivered. The key
question is on what basis decisions for transitions in care should be made.
Specialist palliative care servicesThe Palliative Care Strategy recommends that specialist
palliative care services be established in Auckland, Hamilton, Palmerston North,
Wellington, Christchurch, and Dunedin, with particular responsibility for
providing the specialist palliative care advice for the region.
Palliative care services in some of these areas already have
significant experience in caring for people with MND, and are likely to have
established a skill base. There is scope to enhance the knowledge and skills of
other specialist services, to enable them to become a resource for palliative
care services in their area regarding the care of people with MND. Perhaps as an
interim measure, the services with experience and expertise might become
‘centres of excellence’ in palliative care for people with MND and
provide a ‘super-advisory’ service.
The MND Association has a National Health Professional
Special Interest Group covering a wide variety of health professionals. A
specific MND Palliative Care Special Interest Group or Working Party may have a
variety of useful roles:
ConclusionPalliative care services have a great deal to offer people
with MND, particularly in symptom management, respite care, and in addressing
the psychosocial and spiritual issues that have been shown to have greater
bearing on quality of life than physical functioning. There is, unsurprisingly,
significant commonality in the issues identified in this survey and our earlier
study. Bringing together the individual issues identified the 1995 study and the
organisational issues identified in this 2004 survey makes a systematic approach
to the way forward clearer.
To provide effective services while minimising the risk of
staff burnout (or an unsatisfactory experience for the person with MND and their
family), it is important to:
These strategies should
make it possible to work towards generally earlier (but carefully timed)
referrals to make a real difference to the quality of life of people with MND
and their families/carers.
Author information:
Christine McKenna; Motor Neurone Disease Association Employee; Rod MacLeod,
South Link Health Professor in Palliative Care; Department of General Practice,
Dunedin School of Medicine, University of Otago, Dunedin
Correspondence:
Professor Rod MacLeod, PO Box 331129, Takapuna 9, Auckland. Fax (09) 486 1230;
email: rodm@nshospice.org.nz
References:
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