What can we do to help Australians die the way they want to?

Hal Swerissen and Stephen J Duckett
   

   
              

Med J Aust 2015; 202 (1): 10-11.     ||     doi: 10.5694/mja14.01580            
Published online: 19 January 2015
 

A different service mix could better meet end-of-life care needs for little additional cost

Australians are not dying as they would wish. Surveys
consistently show that between 60% and 70% of Australians would prefer
to die at home, and that residential care facilities are their least
preferred option.1

Dignity, control and privacy are important for a good
death. Choice over who will be present, where people will die and what
services they will get, matters. People want their symptoms to be well
managed, and they want personal, social and psychological support. It is
important to have the opportunity to say goodbye and leave when it is
time to go without pointlessly prolonging life.2

But dying is now highly institutionalised. Over the past
century, the proportion of deaths at home has declined and that of
deaths in hospitals and residential aged care has increased. Today only
about 14% of people die at home in Australia. Fifty-four per cent die in
hospitals and 32% in residential care. Home and other non-institutional
deaths are about half as prevalent in Australia as they are in New
Zealand, the United States, Ireland and France.3

Paradoxically, the likelihood and timing of death is now
more predictable and there is more opportunity and time to prepare for
death because people are now much more likely to die from chronic
disease in old age. But dying is not discussed, and we are not taking
the opportunity to help people plan and prepare for a good death. As a
result, many experience a disconnected, confusing and distressing array
of services, interventions and relationships with health professionals
when they are dying.

Having the conversation

When asked, most people have clear preferences for the care
they want at the end of their life. But these preferences are rarely
articulated, and they are not supported by the open, systematic
conversations that are needed to ensure effective end-of-life care
plans. Instead there is an unspoken faith that science and medicine can
put off the inevitability of death.4,5

As a result, intrusive and burdensome interventions,
including emergency and hospital admissions and intensive care often
continue when there is little point. Palliative care is not discussed,
offered or provided, and services are variable, inconsistent and
fragmented, particularly for support at home and in the community.
Women, single people, older people and Indigenous people die in hospital
at a higher rate than the general population. People with culturally
and linguistically diverse backgrounds and those from rural communities
are more likely to find access to services more difficult.6
These issues will become more prominent in public policy as the baby
boomers age and the crude death rate doubles over the next 25 years.7

Four reforms would facilitate a good death. First, we need
more public discussions about the limits of health care as death
approaches, and what we want for the end of life. Second, the public
discourse needs to be translated into personal choices. People need to
plan better to ensure that their desires for the end of life are
complied with. Third, we need to ensure that if patients have expressed
wishes about the care they want at end of life, those wishes are
followed. Fourth, services for those dying of chronic illness need to be
reoriented so that they focus more on people’s wishes to die at home
and in homelike settings, rather than in institutions.

Encouraging people to plan for death

Failure to talk about and plan for death in advance is one
of the most significant obstacles to improving the quality of dying.
Having these conversations and making these plans is not easy. When
death is near and the quality of life is low, it is hard to know how far
to pursue treatment, especially when the treatment is stressful,
intrusive and likely to further reduce quality of life. Decision making
is even more stressful if there has been no previous discussion about
treatment preferences so that choices must be made in the pressure
cooker environment of a hospital.

Public education programs have been used with great success
in other parts of the health sector to educate the public and set the
preconditions for policy change.

People could be encouraged by a public education campaign
to consider and discuss their end-of-life preferences with their
families and appropriate health care professionals, and document them in
advance care plans. A national public education campaign would focus on
encouraging people to discuss their preferences and choices for
end-of-life care with health professionals, including general
practitioners.

We estimate that a national campaign of 12 to 18 months’
duration that encompassed mass media, public relations, online and
digital media, direct marketing and education campaigns would cost $10
million.

There are now well developed and effective approaches for
systematic discussion of end-of-life treatment and care and the
development of advance care plans. Yet much greater encouragement and
incentives are required to ensure that those plans are much more widely
implemented.8

Health professionals are in the best position to initiate
end-of-life discussions. However, they must shift their focus from
prevention, cure and rehabilitation at appropriate points in time if
these conversations are to occur. It is therefore important that it
becomes normal and expected practice for health professionals to discuss
and plan for end of life with their patients when it is appropriate.
End-of-life plans are personal expressions. They should set out personal
choices about the type and level of intervention a person wants: from
aggressive intervention through to less interventionist and palliative
care.

Initiating discussions about intentions at the end of life
can be hard so we propose that “trigger points” for mandatory
discussions about intentions be introduced:

  • during health assessments for people aged over 75 years;
  • for all residents of aged care facilities and for high-needs
    recipients of home-based care packages as part of assessment and care
    planning; and
  • for all hospital inpatients who are likely to die in the next 12 months.

Advance care plans are important, but are not in
themselves enough to ensure that the wishes of dying people are met and
that end-of-life care is improved. Additional measures need to be in
place to ensure that plans are implemented as part of systematic and
patient-centred end-of-life care.

What is needed for good end-of-life care?

Good care at the end of life is coordinated and
multidisciplinary. Yet this is difficult in Australia’s largely siloed
health system. As well, people receiving palliative care often transfer
between health care settings, such as home, general practice, specialist
medical, outpatient subacute, residential care and hospital.

It is essential to improve the coordination of end-of-life
care, as hard as that is to do in a fragmented system. Effective
strategies include the use of care coordination, case conferencing and
team discussion. People who are dying often need a well qualified and
authoritative health professional to act as an advocate for them to get
the care they need.

Legislative frameworks and guidelines for advance care
plans need to change. They should include clear mechanisms for assigning
specific responsibility to health care professionals to coordinate and
implement plans when people enter end-of-life care.

If the wishes of most Australians to die at home are to be
met, end-of-life care will have to change. More support for dying at
home will be required.

Carers say they do not get the support they need from
partners, family or health professionals. The end of life does not
follow a common trajectory. Often patients who have been discharged home
will have a crisis episode that carers have to manage. The inability to
manage a crisis at home is one of the main reasons that people at the
end of their life are admitted to hospitals via emergency departments.
It is not surprising that carers struggle to cope: only 13%–18% of
carers report that they could access services such as health
professionals, community organisations and government services in a
crisis.9

It is clear that community-based palliative care can
reduced the burden on carers and significantly increase the proportion
of people who are able to die at home. But this will require a
significant increase in the availability of community-based palliative
care. Packages to support dying at home include coordination, nursing
and personal care, specialist medical services where required, carer
support and respite.

The number of people dying at home would have to double to
reach 30% of all deaths, a level comparable to Korea, Singapore,
Ireland, France, Austria, Croatia, the United States, Cyprus and New
Zealand. To support these people with home-based care packages would
require 39 000 more packages per year to be made available for those who
are likely to die within the next 3 months.3

What will it cost?

We estimate that the average cost of community palliative
care packages is about $6000 for the last 3 months of life. Extending
the availability of community packages to enable 30% of Australians to
die at home would require an additional investment of $241 million.10

Increased home and community care for the dying is likely
to reduce the demand on hospital and residential aged care services. If
that demand declined in proportion to the increased number of people
dying in the community, we estimate that costs would reduce by $324
million in acute and subacute hospital sectors and $275 million in
residential care institutions for an overall saving of $50 million.

Taking into account the additional estimated cost of
community-based palliative care packages and the savings in residential
and hospital services, a net cost of $84 million is estimated as a
result of the increase in community-based support for people who are
dying.

Published by Residential Forum

The Residential Forum is to promote the achievement of high standards of care and support for children and adults living in residential care and nursing homes, supported housing, residential schools and colleges, hospices and hostels. It contributes to improving the quality of service to the public. Members of the Forum are people of standing and experience drawn from the public, private and voluntary sectors, as well as some who can speak for service users and carers.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: