Comments of Chapter 7: Supportive and palliative care

Why is this topic important?

Of the world's estimated 9.3 billion people, 16% will be 65 years and older in 2050. Europe will be the «grayest» region, with 29% of its population forecast to be 65 and older by 2050. Currently, Japan, Germany, Italy and Monaco have the most senior citizens aged 65 and older, with Japan leading at 20.8% (1). China, one of the most rapidly emerging economies in the world, has a current ratio of 16 elderly persons per 100 workers. This is set to quadruple to 61 by the year 2050. In Singapore, another rapidly emerging economy, the number is expected to rise three-fold from the current figure of 300,000 to 900,000 by 2030.

As described in detail in Chapter 1, the global tally of deaths is expected to rise to 74 million per year by 2030 (2). Whereas people died mainly from infectious diseases about a century ago, for many decades now chronic diseases, in particular heart disease, cancer and stroke, have predominated as causes of death (3). This is especially so in high-income countries where as many as 25% of those aged 60-65 years old and 50% of those aged 80-84 years old are affected by two or more chronic health conditions simultaneously (4). A population-based study in the Netherlands reported that of patients above the age of 65 diagnosed with cancer between 1995 and 2002, 60% suffered from at least one other serious illness. The most frequent concomitant diseases were previous cancers, heart disease, hypertension, chronic obstructive airway disease and hypertension, with prevalence rates up to 20, 23, 26, 17 and 16% respectively (5). Consequently, more people will suffer from and eventually die with complex chronic diseases (6).

The tragedy of unmet needs at the end of life

Since 1990, when the World Health Organization first recognized and underscored its importance as a component of cancer care, and amended its definition to include noncancer conditions in 2002 (7), palliative care has entered into mainstream medicine in many places in the world (8). It is now widely acknowledged that palliative care involves both the patients and their loved ones, and that it should not only deal with the relief of suffering in the physical, psychosocial and spiritual domains of patients with lifethreatening illnesses, but also with the need to prevent needless suffering, stressing the importance of support systems and a team approach.

Palliative care is 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 (9).

Palliative care (10):

- Provides relief from pain and other distressing symptoms.

- Affirms life and regards dying as a normal process.

- Intends neither to hasten nor postpone death.

- Integrates the psychological and spiritual aspects of patient care.

- Offers a support system to help patients live as actively as possible until death.

- Offers a support system to help the family cope during the patient's illness and in
their own bereavement.

- Uses a team approach to address the needs of patients and their families, including bereavement counseling, if appropriate.

- Enhances quality of life, and may also positively influence the course of the illness.

- Is applicable early in the course of an illness, in conjunction with other therapies intended to prolong life, such as antibiotics, chemotherapy or radiation therapy, or surgery, and includes the exploration needed to better understand and manage distressing clinical complications.

Supportive care, a closely related term to palliative care, refers to the provision of the necessary services as defined by those living with or affected by chronic diseases, to meet their physical, social, emotional, informational, psychological, spiritual and practical needs during the pre-diagnostic, diagnostic, treatment and follow-up phasesof care, encompassing issues of survivorship, palliation and bereavement. Supportive care refers not only to those living with the diseases, but also to carers and health professionals, and must take into account their preferences and values (11).

Despite this strong rhetoric, studies of patients with chronic diseases still show significant suffering amongst patients and needs of families and loved ones remain unmet even in countries reported to have a measure of integration of palliative and supportive care with mainstream service providers. Reviews have consistently shown high prevalence for almost all considered symptoms across all end-stage chronic disease groups (12-14).

There is significant psychosocial and emotional and spiritual morbidity at the end of life (15-17). Although there is a dearth of knowledge in relation to multiple chronic diseases, the picture is likely to be grimmer, as a result of poorer coordination of resources and even fewer opportunities for patients and loved ones to ensure that the services they receive meet their needs.

There is also a small, but growing, body of literature on the burden that individuals feel they are creating for others as a consequence of their illness (18-19). The pressure for families is in fact significant. Caregivers are often middle-aged or older, and often become prone to ill health and financial difficulties as a result of looking after a loved one (20). Many are also not prepared for the care-giving process (21) and the amount of emotional energy that needs to be invested (22), and suffer from anxiety over the suffering of their loved ones and may consequently become depressed. They also face isolation and disruption of their social life and are known to suffer sleep
deprivation (23).

Even though they have a similarly high symptom burden compared with patients with advanced cancer, they tend not to receive the same attention and level of symptomatic relief (24). The problem is frequently compounded by the fact that in such cases death and dying are often regarded by health professionals as a failure; education on supportive and palliative care tends to be deficient; awareness of policymakers and managers about the need for resource allocation is usually low; and resources to enable the patients and their loved ones to adjust to the realities of incurable diseases (particularly when they are multiple) are almost always lacking.

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