Nursing Our Future: Homes for the Aged in an Ageing Population

An Ageing Population

Hong Kong is facing a rapidly ageing population. The proportion of elders aged 65 or above has surged nearly 40% over the past 15 years, from 690,600 in 1998 to 980,000 in 2012. This trend will not only persist, but will grow at an accelerated rate as the number of older persons is projected to reach 2.48 million by 2039, accounting for 28% of the total population. One of the main contributors to such a dramatic ageing phenomenon is Hong Kong’s elevated life expectancy, which stood at 86 years for female and 81 years for male in 2013, ranking first in the world. Unfortunately, the fact that people are living longer does not reflect better physical or psychological well being in old age. According to local health authorities, Hong Kong’s elderly dependency ratio will increase exponentially from 180 to 450 in the coming 30 years, owing to the growing prevalence of chronic terminal illnesses with extended dying trajectories. These alarming figures pose immense pressure on an already strained health care system struggling with financial sustainability in the provision of elderly care services, and especially, long-term care and end-of-life care.

 Ageing in Nursing Homes

Under the rubric of sustainable development within population ageing, one of the most confronting challenges for health care providers today is to optimise quality of life and promote death with dignity for the swelling numbers of older terminal patients. Although the ideals of Ageing and Dying in Place are widely promoted in public health research and advocated through elderly care policies in Hong Kong, nursing homes still takes on a vital role in meeting the long-term care and end-of-life care needs of its elders. Particularly, over 6.8% of those aged 65 and above are living in nursing homes, a top ranking figure among all developed countries, second only to Australia and far exceeding those of the U.S., U.K., and China. There are two types of nursing homes in Hong Kong, Government subsidized and subvented homes, which charge a nominal fee, and private for profit homes which charge monthly fees that range from HKD$3,000 up to HKD$30,000 (approx. USD$387 to USD$3865); the latter accounts for 62% of all long-term-care facilities. While subvented nursing homes are closely monitored by the Government and have an average waiting time of 3 years, private nursing homes are only required to meet minimal regulatory standards and both offer places almost immediately upon request. With such a high institutionalization rate, one would assume that the quality of care is optimal or at least acceptable for nursing home residents during the remaining and most precious days of their lives, but this is far from the truth.

 Quality of Life and Death

According to a 2010 report published by the Economist Intelligence Unit, which appraised the quality of death of a region using four criteria: basic end-of-life care environment, availability of end-of-life care, quality of end-of-life care, and cost of end-of-life care; Hong Kong ranked a mere 20th out of all 40 regions investigated. The report further revealed that although Hong Kong ranked respectably in care quality (i.e. End-of-life care training for medical professionals, availability of painkillers), it ranked poorly for the care environment (i.e. Numbers of hospital beds, social security expenditure on health care), care availability (i.e. Availability of palliative care services and support, existence of a national palliative care strategy), and cost of care (i.e. Availability of public funding for end-of-life care, financial burden to dying patients). These rankings may well suggest that dying well and with dignity in Hong Kong has become a privilege for older people who have access to resources and services. Recognizing the imperative need to examine the dignity-related concerns and quality of life among community-dwelling patients and their families in Hong Kong, our research team at the University of Hong Kong has initiated the “Living and Dying with Dignity” Study in 2009. Through this 2-year research, we have successfully interviewed 18 older Chinese terminal-cancer patients and 18 of their family caregivers via a meaning-oriented approach to identify factors that constitute dignity for enhancing holistic long-term care and end-of-life care provisions in Hong Kong.

 Living and Dying with Dignity

One important theme that emerged from our study is the clear disparities between the quality of care rendered through different hospital departments and long-term-care institutions. Specifically, all of our participants have expressed deep appreciations for the high standards of care provided through the designated hospital-based palliative care units, where the attending doctors, nurses and even support staffs displayed commendable professional competence. Attributes such as patience, respect, kindness, compassion and open communication were identified as key factors that facilitate dignified care in providing the much needed psychosocial and spiritual support to patients and their family members facing the various challenges of mortality. Participants also stated that their designated palliative care teams and especially palliative home-care nurses empowered them to make informed care decisions for improving their overall quality of life. On the other hand, however, the majority of participants has expressed great dissatisfactions with care quality outside of the designated palliative care units, where doctors, nurses and care workers of other medical departments and community care settings lack awareness of their unique needs and concerns at the end-of-life. Some participants further claimed that they have been treated with disrespect and insolence, while others pronounced that the disjointed provisions of care and the absence of communications between different hospital departments and community service agencies have made their journey with terminal-illness ever more difficult.

  Uber: Limits of Control

 Perhaps one of the most significant themes that have emerged from this research is the remarkable challenge for older terminal patients and families to receive dignified care through private nursing homes. Specifically, our study found that dying patients’ sense of dignity and quality of life was greatly supported and enhanced through family care and especially home care. However, most family caregivers lacked the resources and support to render home care and thus had to rely on private nursing homes and other community-based services to attend to their loved ones during their final phases of life. These caregivers expressed feelings of shame, guilt and self-blame, not only because they failed at filial piety, but also because of their sense of powerlessness to improve the quality of care patients received. In fact, the reported impecunious and at times unbearable living conditions of some private nursing homes where the lack of privacy and autonomy, poor standards of hygiene and cleanliness, impoverished diet and malnutrition, as well as the lack of respect among care workers have all together caused more pain and suffering of dying patients. Needless to say, dignity has become a far-reaching goal for these families at the end-of-life.

 Nursing our Future

It is evident that there is an urgent need to reform the current service model so that dignified care for improving the quality of life and spiritual well-being of dying patients and their families will not be trapped behind the closed door of designated palliative care units. The transition from palliative care rendered through hospitals to end-of-life care rendered by nursing homes and other community based long-term care institutions are also clearly imminent. Hence, careful remodelling of the current palliative care provision based on existing knowledge and projected statistics can be an invaluable and cost-effective, starting point for addressing the roaring long-term-care demands in Hong Kong

 First, in-patient palliative care and designated hospice beds have important and distinct roles yet they pose great drains on existing resources and unavoidably limit the expansion of palliative care. Community-based care, thus becomes an important direction for broadening palliative care provision in meeting the needs of the twenty-first century. Specifically, terminally ill patients should be encouraged and provided with greater support to stay at home with their families and live actively in the community. Expanding the provisions of home care services beyond office hours, networking with Non-Government Organisations, training of caries in elderly homes and community centers are all valuable strategies to facilitate living and dying in place.

 Second, as a health care professional and Frontline workers in acute settings often feel perplexed and poorly equipped in caring for dying and patients and families, more consulting services should be developed to extend palliative care services to different ward settings, primary health care institutions, and private clinics. Day-care services which offers opportunities for patients and families to engage in social activities and support groups, receive respite care and other interventions to better cope with death and dying should be expanded beyond the current setup of hospital-attached service units but community-based independent service units. Moreover, self-help groups and volunteering organizations should be provided with greater patronage, educative and pragmatic, to assist in the delivery of supportive care within the community. 

 Third, the provision of palliative care for elders within the next decade will also need to be substantially different given the rapid demographic change. The notion that long-term care facilities and nursing homes will become the hospice of the future caring for older people with multiple chronic conditions with a long trajectory to death is fast becoming a reality. In long-term-care settings, the achievement of quality palliative care will require attention to all levels of the health and social care system, in both its formal and informal manifestations. The traditional palliative care, including its skills, values and management structure which were developed mainly for cancer patients may well exclude some critical aspects of the care required for older people with different illnesses and life circumstances. Thus, the transferability of current practices and philosophies of palliation to the care of older people must be guided by root cause analysis of their specific palliative care needs, rather than a simple transmission of skill set from one population to another.

Population ageing concerns not only Hong Kong, but the entire world. The sustainability of long-term care and end-of-life care for older people, and all people in general, rests upon health care policies and practices that are rid of the pragmatic piecemeal approach, and committed to the promotion of healthy living and healthy ageing with that of appropriate palliative care. Moreover, meeting the needs of the dying and the bereaved is a basic human right, and the goal to help them maintain and achieve dignity must be in the forefront of all long-term-care and end-of-life care services. In essence, the success of care for those facing mortality and their families no longer rests on a small group of specialists or even the medical profession alone, but the concerted efforts and vested interest in living and dying with dignity of every individuals, groups, communities and government bodies of our global society.

Andy H.Y. HO is a writer and assistant professor at the University of HK, based in Hong Kong.