【February 2019】02-The Current Status of Palliative Care in Long-term and Home Care Settings in Japan

Written by the HFT Secretariat

Based on Assistant Professor Jun Hamano's presentation in the 2018 International Conference on Palliative Care in Long-term Care Settings - Integration of Palliative and Long-Term Care.

Assistant Prof. Jun Hamano served as a family physician in a GP clinic for six years as its director. With his special interest in palliative care, especially for the community, he now practices at Tsubaku University Hospital while still serving at the GP clinic one day a week.

While he serves at the GP clinic, Assist. Prof. Hamano has noticed many dying patients needing home care and long-term care resources; these needs have driven him to do more research on the issue. Palliative care in Japan was developed based on cancer patients’ needs, as the Japanese government passed the Cancer Control Act in 2007. As a result, palliative care was encouraged to develop due to financial, educational, and public aspects; but it hasn’t fully engaged with long-term care services. Assist. Prof. Hamano expresses his concern about this, and believes this should be the next goal of the academic community.

Overview of End-of-life (“EOL”) Care in Japan

In his presentation, Assist. Prof. Hamano defines end-of-life as a period of deteriorated health not limited to only dying patients. He especially points out that Japan is a super-aged society with high population growth of people over 75 years old–life expectancy in Japan is 82 years old for males and 90 years old for females–and the rapid decline of the labor force has made the Japanese government extend retirement age from 65 to 70 years old.

According to the population dynamic forecast in Assist. Prof. Hamano's speech, there were 15% elderly over 75 years old in 2015, and it will increase to 20% in 2040. However, the population will decrease from 1.3 billion in 2015 to 1 billion in 2040. With a growing percentage of elders over 75 years old in a declining total population, the number of yearly deaths is expected to increase 0.36 million on top of the original yearly deaths in 2040. Considering this changed population, Assist. Prof. Hamano expressed his concern on man power shortage asking: “Do we have enough professionals to cope with such a large patient demand?” He noted there is already a lack of doctors and nurses in the current healthcare system.

Over the last six decades, the percentage of dying at home has dropped from 82.5% in 1951 to 13% in 2016, and risen from 9.1% to 74.6% in hospitals. Furthermore, over the years the location of death has diversified beyond homes and hospitals as 2.3% of deaths occurred in long-term care facilities and 6.3% occurred in nursing homes.

Assist. Prof. Hamano presents a national survey regarding people's preferred place of death. In it respondents were asked what they would do in certain scenarios, such as for advanced cancer patients with anorexia and dyspnea, or for dementia patients with anorexia and disorientation who require toilet assistance. For most advanced cancer patients, more than half of the respondents chose to be cared for and die at home. For dementia patients, most chose to be cared for in long-term care facilities. However, when asked where they preferred to die, half of the respondents who chose to be cared in facilities would rather die at their own homes.

Long-term Care Facilities in Japan

In Japan, care facilities are categorized in three types: nursing homes, long-term care facilities, and sanatorium medical facilities. Nursing homes are for the elderly who need long-term care and whose ultimate purpose is not returning home. The average stay for nursing homes is 1,405 days and a doctor's presence is not required by law. This is the most common type and serves the most patients. Long-term care facilities, however, are for the elderly whose ultimate purpose is to return home and need rehabilitation. It takes on average almost a year for these elderly to be ready to return to their homes. In addition, a full-time doctor is required to be in these facilities. The last type is the sanatorium medical facilities that provide medical care to the elderly, and their average stay is about 15 months.

Assist. Prof. Hamano further shows how the percentages of dying patients compare among these facilities. More than 60% of nursing home patients stay until death, while the figure drops to 3.8% for long-term care facilities and 33% for sanatoriums. Nursing homes do not require the presence of doctors by law yet has the largest percentage of death. This sends a message of how important and urgent it is for these nursing homes to be capable of providing end-of-life care and tackle the staff shortage issue.

Looking at the causes of death for these facilities, one can notice that both nursing homes and long-term care facilities' main causes of death is old age (frailty), severe pneumonia, and heart failure.

Challenges and Future Prospects

Assist. Prof. Hamano concludes with two main challenges that will affect Japanese society in the near future: one is the increasing number of dying elderly patients who live alone; the other is the decreasing workforce population. He foresees that there will be fewer health care providers to address the former challenge, and so, the care system for elderly who live alone needs to build up as soon as possible, not only in offering health care services, but also in initiating the ACP dialogue.

As already mentioned, over 60% of nursing home residents die in the same facilities, and this statistic suggests that demand for palliative care and EOL life care are of crucial importance. Therefore, how best to implement Advance Care Planning in long-term care facilities and to equip staff with adequate knowledge and EOL care skills need to be examined carefully.

Many questions remain as little research has been done on long-term care facilities thus far. For example, it is unclear what kind of primary care approach and what level of EOL care quality are appropriate. It is also unclear how much reimbursement for care services is insufficient whether for nursing homes or for home care. Additional challenges include staff shortage and lack of financial support.

Though palliative care is still being introduced to the facilities, relevant surveys on the current status will need to be done in order to understand a bigger picture of the facilities’ demand. Thus, key issues include clarifying facilities’ need for palliative care, offering education and training for the staff, and raising the public's awareness about ACP. It may also be helpful to include experiences from other professionals in the field.