Ringkasan

End of Life Issues

INTRODUCTION
Drawing on international data, trends in mortality are identified, including age at
death, causes of death, and place of death. These trends are analyzed for their significance
for understanding the social conditions of ageing and dying. Secondly, themes from the
study of death and dying are considered in relation to ageing, with a particular focus on
what is understood by a ‘good death’ and how age influences this understanding. Thirdly, a
discussion of issues in end-of-life care and support for older people considers the
interrelationship between the social status of older people and the circumstances in which
they die. Socioeconomic and geopolitical structures, health and social care systems, family
forms and functions, cultural and religious norms and practices, as well as individual
lifestyles, resources, and relationships all have a bearing on the circumstances in which
older people die.

PATTERNS OF MORTALITY IN AN AGEING WORLD

Patterns of mortality around the world present a complex picture concerning the age
at which people die, the causes of death, and the place of death.
Age of Death
The World Health Organization estimates that by 2025, 63% of all deaths in the world
will be among the people aged over 65s. There is a strong association between the overall
socioeconomic status of a country and the likelihood of deaths occurring in old age rather
than prematurely. According to the Global Forum for Health almost 85% of deaths in high-
income countries occur after the age of 60, whereas in low to middle-income countries only
45% of deaths occur in this age group. At the same time, there are also variations between
countries that have a similar socioeconomic status, which demonstrates that policy
decisions make a difference to people’s chances of living to old age.
In their examination of global mortality trends, McMichael et al. (2004) identify three
groupings of countries:
1. Countries with rapid gains in life expectancy at birth, such as in Chile, Mexico, and
Tunisia
 2. Countries where gains in life expectancy are slower or plateauing, including high-
income countries such as France and Denmark
3. Countries where life expectancy is stagnating or falling, affecting primarily younger
to middle-aged people, such as Russia and Zimbabwe
It is important to point out that trends in each of these groupings have implications for
the circumstances in which older people die. For example, increases in middle-aged
mortality affect employment patterns and the availability of family carers for older people
when they are dying.
Causes of death
Because of the ageing of populations, it is expected that there will be a substantial
worldwide shift in the distribution of deaths from communicable to non-communicable
diseases. By 2030 it has been projected that almost 70 per cent of all deaths world-wide will
be from non-communicable diseases, including ischaemic heart disease, cerebrovascular
disease (stroke) and chronic obstructive pulmonary disease.
Since all human beings must die, a death in old age can be regarded as a natural event
– the normal course of events because the individual has lived for a full lifespan. On the
other hand, information about causes of death is crucial to the allocation of resources for
health care. Determining the cause of death can also play a part in protecting vulnerable
older people from abuse and homicide. The practice of establishing the cause or causes of
an individual’s death can therefore provide a form of protection of older people’s rights. In
addition, the practice of recording underlying and contributory causes provides useful data
about complex health conditions that require greater integration of care.
One cause of death amongst older people that receives surprisingly little attention is
suicide. Rates of death from suicide are higher in people aged over 65s than in any other
group, particularly in richer countries. The reasons are multidimensional, related to
isolation, depression, widowhood or divorce, and ill-health, but older people are more likely
to have experienced these. Older people are also at greater risk of death from a range of
external threats, including violence, wars, and environmental threats.
Place of death
As life expectancy increases, death is increasingly disassociated from the daily lives of
younger people. There is a relationship between level of development and place of death
but there are also important variations, and age is a crucially important influencing factor.
At the individual level, the place of death is influenced by age, cause of death, gender, and
ethnic origin as well as whether the person who is dying lived in a rural or urban
environment. At the societal level, influencing factors include the organization of health
services, policy priorities, and levels of knowledge about the diseases of old age as well as
cultural expectations about ‘the proper place’ to die.

A ‘GOOD’ DEATH: WHAT ARE THE IMPLICATIONS FOR DEATH IN OLD AGE?
A premature death, when an individual dies biologically before achieving his or her full
social potential, is perceived as more tragic than a death in old age, when an individual has
‘had a good innings’. Yet, deaths in old age are frequently not good. In old age, if the cause
of death results in a long process of dying and dependency for care on others, an older
person might be regarded as socially dead before their biological death.
Within relatively developed Western societies, perceptions of what constitutes a ‘good
death’ may be summarized as follows:
 The unique physical, psychological, social, and spiritual needs of the individual who is
dying are given attention in a holistic way.
 Pain and other distressing symptoms are eliminated or controlled.
 The dying person is accompanied and given comfort.
 The dying person is aware of their impending death and able to discuss this with
their family and those providing treatment and care.
 The dying person is able to exercise choice and control as far as possible over the
place of death and forms of treatment or decision not to be given treatment.
 The family and others close to the dying person are given support and comfort both
prior to the death and subsequently in their bereavement.
Good for whom ?
Death by natural causes is generally more likely to be considered as good rather than
death by accident, homicide, or suicide. On the other hand, physician-assisted death might
be regarded by an individual older person and their family as good – at least better than a
long and painful death by natural causes – but the societal view might be that this is a form
of murder. Rory Williams (1990) identified two types of good death: the quick, painless
death and a death within the bosom of an affectionate family.
Awareness, choice, and control
 Within Western contexts, awareness, choice, and control are key elements of a good
death but age has an impact on their achievement. Giving individuals greater choice and
control over treatment decisions at the end of life has become a policy goal as well as a
campaigning issue for older people’s organizations in Western countries. The development
of advance directives, or ‘living wills’, which set out a person’s wishes about how to be
treated, indicates that choice and control are important goals even where an older person
loses mental capacity.
Outstaying your time and being a burden
It is often assumed that the shift towards deaths in old age from chronic and
degenerative diseases will result in demand for health care over a longer period of time and
drive up the cost of health care to the detriment of younger people. However, there is a lack
of sound comparative data to support this view. Seale (2005) points out how deaths at an
earlier stage of the life course, such as from HIV/AIDS or tuberculosis, may also be preceded
by long-term dependency and symptoms.
Dixon et al. (2004) concluded that there was no discernable increase with increasing
age in the time spent in hospital in the period before death. Thus, it is not age per se that
generates costs but proximity to death, and the costs of care are greatest amongst older
people because older people make up the largest proportion of the dying.
Dignity at the end of life
Since dignity is a social and cultural construct, it follows that there are clear cross-
cultural differences in how dying with dignity is understood. Hence, for some, bearing pain
stoically might be regarded as dignified, whereas for others suffering pain is an indignity. In
Western contexts, dignity is inextricably linked with autonomy. Woolhead et al. (2004)
concluded that the key dimensions of dignity for older people are identity, respect,
recognition, autonomy, and independence, all of which are highly significant to an analysis
of death in old age. The process of dying poses a challenge to older people’s dignity because
it is at this stage of the life course that dependence on others for support becomes
inevitable.

CARE AND SUPPORT AT THE END OF LIFE

The dying trajectory: predicting the course of death
The concept of the dying trajectory describes both the length of time it takes for a
person to die and also the ‘shape’ of that process. The trajectories of deaths from non-
communicable diseases are likely to be longer and more complex than those from acute
infections.
Murray et al. (2005) identify three common trajectories. The first, frequently found in
deaths from cancer, is where there is a relatively short period of decline that is reasonably
predictable. The second, typical in heart failure or chronic obstructive pulmonary disorders,
is where a person will have long-term health problems accompanied by periodic episodes of
serious illness which they survive but to which they eventually succumb. The third trajectory
is a prolonged and steady dwindling of health, typical in Alzheimer’s disease, which might
end fairly suddenly after an acute episode of infection or a fractured neck of femur. Uotinen
et al. (2005), for example, identified how older people’s subjective perceptions of age were
a strong predictor of mortality, whilst Bond et al (2006) found that self-rated health (in
combination with other co-variates) has the capacity to predict death.
Prolonging or hastening death
The extension of late-life expectancy has been highly significant since the late 20th
century. The role played by medical interventions in extending and shaping older people’s
dying trajectories is important but there are variations in medical practices, which reflect
differences in attitudes as well as in legal codes. Avoiding a prolonged and painful death
provides a rationale for euthanasia or physician-assisted death, which is practised in few
parts of the world but which has generated a great deal of interest. On the other hand,
many older people’s organizations oppose physician-assisted deaths on the grounds that
older people’s social position and the perceptions that they are a burden would place them
under increased pressure to end their lives prematurely.
Palliative care
The World Health Organization defines palliative care as: An approach that improves
the quality of life of patients and their families facing the problems associated with life-
threatening illness, through the prevention and relief of suffering by means of early
identification and impeccable assessment and treatment of pain and other problems,
physical, psychosocial and spiritual’. Fewer than 15% of countries in Wright et al.’s (2006)
study had palliative care integrated into their health services. Extending palliative care and
reducing inequalities in access are important goals but there are widespread age-related
inequalities. In spite of the high proportion of deaths in old age in high income countries,
the numbers of older people receiving palliative or hospice care is well below that of
younger people.
Davies and Higginson (2004) argue that, in the context of ageing populations, models
of palliative care need be flexible enough to apply over a longer period of illness and not just
at a defined point just before death. Thus, for older people to benefit, palliative care should
not only be extended but also re-conceptualized to encompass their longer, more complex,
and varied dying trajectories.
Spiritual care at the end of life
Organized religion can offer a bulwark against insecurities and suffering at the end of
life. It can also offer protection by instilling in carers a sense of moral obligation to provide
care and to treat the dying person with kindness. Spirituality is not synonymous with
religion. For MacKinlay (2005), spirituality entails the human need for meaning in life and
relationships with others. She maintains that there is a need to reclaim the spiritual
dimension of care at the end of life because the medicalization of the dying process
associated with modern life has led to a neglect of spiritual needs.
Care at the end of life: who provides it ?
Care at the end of life is provided by family members and a range of volunteers, as
well as by paid healthcare professionals and staff. As discussed, without a co-resident family
carer it is very difficult to die at home and, given demographic trends, it is likely that nursing
homes will continue to play an increasingly important role in caring for the dying.
Countries with the least-developed healthcare systems face the loss of key health
workers because of the demand for more care staff in long-term care services in countries
where numbers of people reaching very advanced ages are greatest. Low-income countries
also face greater pressures on family carers because of the undeveloped state of health
services and because of particular pressures created by the HIV pandemic, although there
are differences between countries in the ways that these pressures are managed. Brodsky et
al. (2003) identified that whereas the family remains the predominant source of care in the
home, volunteer support from communities was needed in an increasing number of
countries.
 The importance of resources for care at the end of life is evident in all contexts: the
lack of adequate hospital care creates pressure on families in Indonesia but so too does the
lack of adequate resources for home care in the United Kingdom. Long-term care for older
people is often evaluated in terms of its capacity to promote or restore independence and
its potential role at the end of life is rarely considered. Long-term care could play a part in
the development of more flexible forms of palliative care discussed above.

CONCLUSION
Evidence suggests that as societies modernize, attitudes towards dependency do not
change. Indeed, given the high value placed on individual independence in Western cultures
they are likely to become more entrenched and when resources are limited it becomes all
too easy for dependent people to be perceived as a burden. Contemporary demographic
trends mean that burdensomeness is strongly associated with old age and felt most keenly
at the end of life.
The relationship between health and care services, on the one hand, and family care,
on the other, appears to be a crucial factor in determining whether an older person will
have a ‘good death’. Family care can play an important role in overcoming the negative
effects of institutionalized deaths but family care requires support and resources in order to
overcome the risk that older people will be seen as too burdensome. The need for care at
the end of life throws into sharp relief our social nature as human beings and reminds us of
the importance of relationships at all stages of the life course.