Faced with the advent of a super-aged society, all countries have begun to discuss and make decisions. Whether through the formulation of laws, policy support, or public advocacy, they will gradually discuss and develop a more comprehensive care system for the elderly population, including hospice and palliative care.
During a visit to European countries, Ping-Jen Chen, who is a specialist in family medicine and geriatric medicine at Kaohsiung Medical University Hospital, and who has long been involved in integrated care for dementia patients, saw the comprehensive end-of-life care provided by the Netherlands and the United Kingdom for frail elderly people.
Towards a super-aged society: challenges and reflections in various countries
“Hospice care should not only be exclusive to diseases or limited to the terminal, but should be a more diverse care option for the elderly,” says Ping-Jen Chen. Taiwan officially entered the aging society in 2018 and is expected to move towards a super-aged society in 2025. Ping-Jen Chen’s research indicated that the medical expenses people spend in the last three or four months of their lives may far exceed the sum of their lifetime medical expenses. Ironically, various data also show that the life-support medical treatment during this period is often ineffective, causes patients to suffer greatly, and lacks a good quality of life. “Under such circumstances, the government began to think about whether it should strengthen the system and concept of hospice care, so the issue of palliative care for the elderly has gradually become a national policy,” Ping-Jen Chen pointed out. Although Japan is well known to be the most aging country in the world, on the whole, European and American countries entered the aging society as early as the 1990s, among which Europe entered the super-aged society after 2000, and the United States and Canada followed suit after 2010. Therefore, European and American countries have developed relatively comprehensive policies and practices for palliative care for the elderly. In view of the various problems that the elderly may encounter, they further consider end-of-life medical care issues for the elderly, such as multiple comorbidities, dementia, disability, and frailty.
Regarding the frailty of the elderly, Ping-Jen Chen analyzed that between 2000 and 2005, an increasing number of people began discussing this issue and proposed a clinical frailty scale. By 2010 to 2011, countries such as Canada, the Netherlands, Spain, New Zealand, and Mexico had successively incorporated palliative care for the elderly into their national policies. The most complete report comes from the White Paper on Palliative Care for the Elderly in 2011, which was put forward by the European Office of the World Health Organization (WHO). It consolidated the main development plans and related care aspects in Europe. After that, countries gradually developed relevant clinical guidelines, while Taiwan compiled the Guidelines for Hospice Care for Dementia in 2016 and the Guidelines for Hospice Palliative Care for the Debilitated Elderly in 2018.
Palliative care for the elderly: key decision-making issues
Ping-Jen Chen stated that the guidelines compiled by various countries are slightly different. For example, New Zealand, the United Kingdom, and the Netherlands are the most complete, and they have their own guidelines for different settings, such as long-term care institutions and homes; while Singapore and Japan tend to focus on special issues, such as nutrition, moisture, and infectious disease treatment.
However, in terms of developing regulations, policies, and care content in various countries, most of the aspects covered do not deviate from the core defined by WHO, which includes holistic care of body, mind, society, and spirit; communication with patients and family members; care planning; care during the last weeks or days of life; family care; and coordination and continuity.
“Coordination and continuity include the timing of hospice care intervention,” Ping-Jen Chen further explained. Palliative care after disease diagnosis should be considered decoupled from hospice care at the end of life, especially for the frail elderly with a long life course. Since the elderly are living longer, palliative care can gradually intervene in the treatment of symptoms and comfort care. At the same time, care choices should be made when acute or severe symptoms occur. “Coordination means that there must be a mechanism among the different departments and different care fields; and continuity means that arrangements from palliative care start at the early stage of the disease to the end of life. Even arrangements for family members’ grief and consolation must be considered, rather than letting subsequent caregivers be unaware of the care direction and rely solely on medical convention to arrange care. “
In this regard, a survey showed that New Zealand performs best, whether in the five core areas, early intervention of palliative care, or national resource allocation, which have been fully considered in regulations and clinical guidelines. In addition, the Netherlands, the United Kingdom, Austria, Singapore, Mexico and other countries are also ranked highly. As a result, Ping-Jen Chen regretfully expressed that Taiwan should also be among them, but unfortunately, due to international political situations, it was not included in the evaluation.
Elderly care as part of an inclusive community
Ping-Jen Chen, who visited the Netherlands and completed his Ph.D. in the UK, has seen in both countries the high importance that society places on hospice care for the elderly.
He cited the United Kingdom, the birthplace of hospice palliative care, as an example of a society with abundant advocacy energy, where the topics of frailty in old age, aging, and palliative care have become mainstream in recent years. “For them, this is a matter of improving the quality of life; it is a basic human right, so the value of a good death has always been deeply rooted in the hearts of the people.”
Ping-Jen Chen also observed that not only is there a high degree of social discussion, but there are also many related non-profit organizations. The annual donations for this purpose are enough to support 70% of domestic hospice palliative medical plans. With such a huge public consensus, non-profit organizations are also more actively investing in funds, manpower and the time to achieve more comprehensive program goals. For example, Aged UK, the largest NPO organization for the elderly in the UK, has produced a 40-page promotional material to teach the elderly how to think about their future, participate in social prescription activities, and make advance medical directive. Marie Curie, the largest cancer and hospice NGO in the UK, not only set up several hospice homes, but also employs nurses across the country to serve the elderly who are in need but cannot afford the cost of private nursing care, thereby fulfilling their wishes to die comfortably at home.
It is a medical prescription that combines activities such as music and art. Different from the concept of traditional drug treatment, it starts from the prevention and management of mental health, and provides comprehensive care and support services for patients through the connection of medical institutions and local organizations. The UK has included it in one of the long-term plans of the National Health Service.
“In that land, you don’t think that the final hospice care must be in the hospital,” Ping-Jen Chen affirmed. He saw the society’s assistance and support in the UK, and it even developed related diversified plans. He also once went to the hospice to be a volunteer and was surprised to find that the architecture of the hospice is almost the same as ordinary houses in the community; that the residents of the community will take initiative to volunteer in the hospice; and that the school also welcomes and accommodates children’s visits in the hospice. Observes Ping-Jen Chen, “It perfectly embodies what is meant by a peaceful symbiotic community.”
Palliative care intervention time：the family doctor system as an aid
In addition to the UK, Ping-Jen Chen also praised the continuous innovation of the Netherlands. Whether it is in regulations, social resources, or civil society, the discussion on the care of the elderly has never stopped. He said, “In the Netherlands, everything can be discussed, including red light districts, drug use, and etc. After public discussions, decisions will be made and new service models organized. The same is true for their elderly care system because it was formed in the public debate, so the content is quite rich and succinct to practical needs.” In addition to seeing the full mobilization and engagement of citizens and society, Ping-Jen Chen has also found that the Netherlands, New Zealand, and the United Kingdom – the three countries with the best hospice care for the elderly – have a common feature, that is, the family physician system.
According to Ping-Jen Chen, in these three countries, almost everyone has a family doctor, who provides the daily family care. When a hospice is launched or when there is a need of evaluation, checkup, and treatment by hospice doctors, family doctors will assist in referrals and coordination. Chen says, “Under this interconnected system planning, the initiation and connection of hospice care are even smoother.”
Learning from foreign countries：Taiwan is gradually improving
Turning our attention back to Taiwan, since June 1, 2022, the terminally debilitated elderly have been officially included in the health insurance and hospice care support, and the evaluation criteria for case acceptance has been established in reference to the Supportive & Palliative Care Indicators Tool (SPICT). Ping-Jen Chen explained that SPICT is an evaluation scale developed by the University of Edinburgh based on the patients received by community and family physicians, which is different from the common research on hospital patients.
Unlike cancer, which has a clear course of disease, the end stages of non-cancer diseases such as dementia and debilitating diseases are relatively unpredictable and long-term. Therefore, it is better to arrange palliative medical intervention after the disease has been diagnosed.
“The core of SPICT is to use indicators to find the basis for the decline of the overall health status,” explains Ping-Jen Chen. For example, if the elderly start to show irreversible deterioration in daily function, require care for some physical or mental health problems, have significant weight loss, or their original disease symptoms cannot be managed by the original team, “SPICT mainly screens out the elderly who need palliative care, which is actually different from terminal palliative care or end-of-life prediction of cancer.”
Ping-Jen Chen recognizes that SPICT serves as a guide and index tool for supportive and palliative care, and it is also in line with the current ideas of palliative care for the frail elderly. This allows for timely intervention of palliative care when the elderly have care needs or when the current medical care model cannot meet their overall care expectations.
“Currently Taiwan’s health insurance also recommends using the SPICT scale for admission assessment for the terminally frail elderly, but most medical institutions still use the admission criteria for terminal cancer symptoms,” Ping-Jen Chen said. He believes this will be Taiwan’s most significant challenge after the new addition of the terminally frail elderly to hospice care admissions.