Epidemiology of Deaths in Hong Kong

EPIDEMIOLOGY OF DEATHS IN HONG KONG

To receive care and die in own preferred place was regarded as one of the indicators of “good death” for individual patient.(Khan, Gomes, & Higginson, 2014)From a systematic review involving more than 100,000 people in 33 countries, most people preferred dying at home, a place where patients may feel more comfortable physically and psychologically. (Gomes, Calanzani, Gysels, Hall, & Higginson, 2013)

A decade ago, most deathsoccurred at home in Chinese societies. Home death is regarded as the natural way of death in traditional Chinese belief. “To die in one’s own bed” (壽終正寢) is regarded as the most glorious and fortunate way of death.(Tang, 2000) “Falling leaf returns to the root soil(落葉歸根) described that home death is as natural as fallen leaves.(Yao et al., 2007)

While Hong Kong is now highly modernized, Hong Kong is still a place where traditional Chinese culture prevails. Despite the remarkable economic growth in Hong Kong throughout all these years, the total health expenditure is only 5.5% of the GDP, lagging behind other developed economics. Nonetheless, the public services under the Hospital Authority (HA) provide a safety net in health care, which is heavily utilized by the general public. More than 90% of deaths in Hong Kong occurred in public hospitals. In 2014, there were about 46,000 registered deaths, and with the rapidly aging population, the annual deaths would rise to69,000 by 2035 and to 92,000 by 2046.(Leung, 2016)Cancer remains the top killer in Hong Kong, accounting for almost one-third of all deaths. However, the prevalence of chronic organ failure is increasing and deaths from chronic diseases and cancer account for more than half of total deaths.(Department of Health, 2015)

Western Medicine has evolved on the basis of body organs and systems. However, the needs of the dying are hardly organ based and therefore the role of organ specific interventions diminishes as death is near. Modern Palliative care has risen against this background and has evolved with time to meet the needs of patients and their families. According to WHO definition, palliative care is no longer limited to the last days of life but is applicable in the earlier stages of the disease trajectory. Moreover, the application is no longer limited to terminal cancer patients, but also to patients with life limiting chronic diseases.(Connor & Sepulveda Bermedo, 2014) Hospice care was formally established in the Hospital Authority in the 1980’s. United Kingdom is the first place to recognize Palliative Medicine as a specialty in the world, and followed by Hong Kong in 1987, under the Hong Kong College of Physicians. “Palliative care” is now a commonly used term, but in local context the term “hospice care” is sometimes used interchangeably. In Hong Kong, the palliative care service in HA supports the terminal cancer patients by a comprehensive range of services including inpatient, outpatient, home care, day care and bereavement care, however, the coverage was less than 70% in the 2012-13 review.(Leung, 2016) Palliative care for non-cancer, however, only began to develop in HA in 2010.

While palliative care service can be delivered as various modalities as mentioned above, only a proportion of them diedin palliative care beds, more died in the acute settings, and very few died at home or in institutions. Although the degree of matching patients’ expressed choices and the actual place of care and death is not known, it is important for a modern society like Hong Kong to provide choices so that patients who wish to die in place are being facilitated or supported to do so. (Lam, 2013; Luk, Liu, Ng, Beh, & Chan, 2011)

BENEFITS OF ACTUALIZATION OF PREFERRED PLACE OF CARE AND DEATH

Where patients stay in their last days of life is important to their well-being and also to their caregivers. A survey conducted in Japan reported that home death was associated with higher quality of death and dying when compared with death in other settings. Home death was associated with lower overall caregiver burden as well as financial burden as compared with hospital death.(Kinoshita et al., 2015) Another study performed in UK showed that cancer patients dying at home were more peaceful in their last week of life as compared with those dying in the hospital. The grief of bereaved caregivers from home death group were also less intense than hospital death group.(Gomes, Calanzani, Koffman, & Higginson, 2015)

In a multi-site, prospective, longitudinal study conducted in the United States, patient’s quality of life was negatively affected by dying in the intensive care unit (ICU) or hospital setting and more aggressive medical care.(Wright et al., 2008, 2010) Bereaved caregivers of patients who died in the hospital were at higher risk of developing prolonged grief disorder.(Wright et al., 2010)

DYING AT HOME = GOOD DEATH?

Hoare et al. challenged the belief that home death was the most preferred option. Their systematic review concluded that “the proportion of patients who preferred home death or elsewhere”should beunknown in view of considerable missing data in the studies under review. (Hoare, Morris, Kelly, Kuhn, & Barclay, 2015)They also concluded that the preferences expressed by the respondents were very much affected by the place of interview. For example, home death would be more preferred if the respondents were from community-based sample, but less preferred among the respondents from hospices and hospitals.

Early studies showed that home death was associated with higher psychological distress experienced by the bereaved caregivers as compared with death in other sites.(Addington-Hall & Karlsen, 2000) However, latest studies suggested the contrary.(Gomes et al., 2015)In Taiwan, Yao et al. reported thatthe good-death score was higher among the home death group when compared with those dying in hospital, however, the “place of death” was not an independent predictor of good death on multiple regression analysis. (Yao et al., 2007)

In Hong Kong, a survey was conducted by the Society for the Promotion of Hospice Care on the general public. A total of 738 Hong Kong Chinese adults were asked to rate their agreement against 14 statements regarding good death from 0 (totally disagree) to 10 (totally agree). ‘Dying at home’ was rated as least important for good death with a score of 2.72, which was even lower than having an extravagant funeral. The three “physical factors” including “no physical torture”, “a painless death” and “not dependent on others” were rated as the most agreed indicators and their mean scores were 8.78, 8.59 and 7.93 respectively.(Wallace C. H. Chan, Chan, Chan, Tin, & Chan, 2004) Itwas postulated that the general public was less concerned about the “post-mortem” itemsas compared with the “physical factors”.(Wallace Chi Ho Chan, Tse, & Chan, 2006) As the medical experience of the cohort was not taken into consideration, views of the general may not represent that of the sick patients.

Pollock warned the risk of distraction from attending the dying experience of patients and family members by focusing on place of death as the key indicator of quality of care for the dying.(Pollock, 2015) She argued thatdying at preferred placemight not be the priority for the public or even for the dying patients. She described the idealization of home death as “preoccupation” and it could be guilt-promoting if death occurred in other settings. She called for actions to improve the experience of dying in hospital given that this is the most frequent place where deaths occurred.

MODERNIZATION AND CHANGE IN CARE SETTINGS

Modernization changes the context and settings in caring for the terminally ill, including their dying phase. This is also the case in Asian countries and places that have undergone rapid socio-economic development after World War II.

Gu and colleagues postulated a “three-stage hypothesis on place of death” (Table 1) to explain the pattern of transition of death settings with the socioeconomic development.(Gu, Liu, Vlosky, & Yi, 2007)

Table 1: Transition pattern of death settings with socioeconomic development

Nonetheless, among the Asian countries, the pace and magnitude of economic growth, the development of their health care system including that of their palliative care movements differ. The following highlights the situations in various Asian countries.

In Singapore, a densely populated country without “urban-rural differentiation”, emergency hospitals can be reached within half an hour for all residents.(C. Y. Hong et al., 2011)A pilot survey in Singapore showed that about half of interviewed cancer patients preferred home death while one-third preferred hospital death.(Lee & Pang, 1998)In a cross-sectional study of Singapore Cancer Registry, more than 52,000 deathsfrom 2000 to 2009were analyzed. More than half of the deaths occurred in hospital, 3 out of 10 deaths occurred at home while one-tenth occurred in hospice beds.(C. Y. Hong et al., 2011) Factors associated with home deaths instead of hospital deaths included older age, female, Malay in ethnics (as compared to Chinese), cancer as the primary cause of death as well as duration of illness from 1 to 5 years. Factors favouring hospice death over home death included being oldage, presence of distance metastasis and dying from non-cancer illness,while suffering from haematological malignancyand being youngage were consistently associated with hospital death.

In Taiwan, with population mainly Chinese in ethnicity, home death is a tradition. From a retrospective population-based study involving nearly 700,000 elderly deaths between 1995 and 2004 (Lin, Lin, Liu, Chen, & Lin, 2007), two-thirds of deaths occurred at home and one-third occurred in hospital. Patients living in administrative area with more beds per population, as well as most urbanized communities were associated with higher odd of hospital death. In a more recent survey of 2,188 terminally ill cancer patients from 24 hospitals, 54.7% of the participants expressed the preference to die at home. The adjusted odds of preferring to die at home were greater for participants described by one or more of the following factors, including participant's preference for place of death made known to family, participants with awareness of prognosis, greater functional dependency, cancer of liver/pancreas/head/neck, and education level below junior high school.(Chen, Lin, Liu, & Tang, 2014)

A survey was also conducted in South Korea through internet. A total of 277 elderly women participated in the study and more than 60% of respondents preferred hospital death and only one-third preferred home death. “Reducing children’s burden” was the most common reason behind the choice of hospital death.(J. H. Choi, Byeon, Lee, & SH, 2001) Another Korean study on cancer patients and family members found that living in rural area increased the odd of preferring home death. (Adjusted odd ratio 3.31)(K. S. Choi et al., 2005)Regarding the actual place of death, the proportion of hospital deaths increased from one-sixth in 1992 to almost 40% in 2001 as reported by a retrospective review of a 10-year death registration database from the Korean National Statistical Office with over 2.4 million deaths.Younger age group, having higher education, living in metropolitan area, living in area with more hospital beds available, dying from cancer, ischaemic heart disease, and chronic lower respiratory diseases increased the odd of dying in hospital rather than at home.(Yun, Lim, Choi, & Rhee, 2006)

In Japan where the life expectancy is comparable to that of Hong Kong, one in eight deaths occurred at home. A population-based national survey involving 1,042 citizens in Japan identified the preferred place of death among the general public as 40%, 20% and 15% for home, palliative care unit and hospital respectively. (Fukui, Yoshiuchi, Fujita, Sawai, & Watanabe, 2011) Factors favouring hospital care rather than home based care included being female, older age, regular hospital visits, experienced relative’s death due to cancer, unfamiliar with home care nursing and the 24-hour home care support system.

Going across the border, the scene is very different in China as compare with Hong Kong. The Chinese Longitudinal Healthy Longevity Survey studied 6,444 deceased patients who died at the age of 80 to 105 years, majority (92%) of them died at home. However, the authors showed that an increase of 1 additional hospital bed per thousand population would increase the chance of hospital death by 25%, while a one percent point increase in non-agriculture population was associated with a 2% increase in hospital death.(Gu et al., 2007)

Beyond Asia, the association of hospital bed provision and hospital deaths instead of home deaths is also evident. In the systematic review performed by Gomes and Higginson, which included 58 studies with over 1.5 million patients from 13 countries, living in the rural area was associated with home death, while living in the areas with greater hospital support was associated with hospital death.(Gomes & Higginson, 2006) Living in the city with more than 100,000 residence was associated with hospital death according to the Mexican Health and Aging Study.(Cárdenas-Turanzas, Torres-Vigil, Tovalín-Ahumada, & Nates, 2011)In Botswana where two-thirds of the population died at home, living in city and town were associated with less proportion of home death when compared with rural area.(Lazenby & Olshvevski, 2012)

Hong Kong Scenario

Several local studies have explored the preferred place of care and death among Hong Kong patients and general population. (Table 2)

Table 2. Local studies on the preferred place of care and death

The above studies were conducted among different populations and findings could be heterogeneous. Findings also suggested that the preferred place of care need not be the preferred place of death. Among the two studies conducted in advanced cancer patients receiving palliative care , PCU was the most preferred place of death.(T. Hong et al., 2010; Woo et al., 2013) It is postulated that medical experience especially that of hospitalization, could affect patient’s choice. Also, palliative care is an unfamiliar concept among the public. A local survey on Hong Kong people’s attitudes on death and dying found that only 10.5% of respondents would like to receive information about hospice care.(Mjelde-Mossey & Chan, 2007)On the other hand, enrollment in palliative care service might enable patients and family to have more understanding of palliative care service and gained more acceptance. A study in Marie Curie Hospice of Edinburgh found that while 80% of patients with no hospice admissions expressed wish to die at home, while 79% of patients who had previous hospice admissions expressed wish to die in the hospice.(Arnold, Finucane, & Oxenham, 2015) Another study in New Zealand found that patients initiallytransferred to hospice for respite care were associated with dying in the hospice unit.(Taylor, Ensor, & Stanley, 2012)

The choice of home as the preferred place of care in Hong’sand Woo’s studies was reported by 37% and 22% of patients respectively, but in both studies, home was only the preferred place of death in 19% and 12% respectively. Patients who preferred to die in old age home were less than 5%. These findings contradicted that reported byChu et al. which showed that one-third of elderly home residents preferred to pass away in their residential homes.(Chu et al., 2011)By logistic-regression, independent predictors of preferring receiving community end-of-life care and dying in the institution were older age, not having siblings in Hong Kong, Catholics religion, non-believer of traditional Chinese religion, not receiving any old age allowance, lower depressive symptoms and being residents of subvented nursing homes. However, when interpreting these results, it should be noted that around 80% of respondents in Chu’s study were independent walker with mean Barthel Index of 18.45 (maximum score 20), and 70.6% perceived their health as good or fairly-good. They represented a group of relatively healthy elders. Also, the face to face interviews took place in the residential homes where the respondents stayed, the factor of place of interview may have impact on the findings. It is also noteworthy that the local studies are cross-sectional and the stability of patients’ choices has not been explored.