Many of us struggle with difficult decisions regarding, say, our careers or relationships. But one decision that many of us avoid is "How do I want to die?"
It is, of course, a question most of us will ask of ourselves eventually.
In Japan, where a million people die every year, more than 300,000 die from terminal cancer. An overwhelming majority of those sufferers spend their final days staring up at hospital ceilings, away from families and friends, and are often subjected to resuscitation and other rigorous and painful treatments at the very end.
When death knocks on your door, don't you want to live your final days at peace and with dignity? The hospice movement, which began in Britain in the 1960s, was initiated to address this question. In Japan, a group of doctors set up a study group on hospice care in the 1970s, leading to the first establishment of a palliative care unit in Hamamatsu, Shizuoka Prefecture, in 1981.
"The hospice movement in Japan started as an antidote to traditional health care, which focused too much on medical examinations and treatments, and disregarding the human rights of patients [and their suffering]," says Dr. Kenji Nishitateno, director of Peace House Hospice in Kanagawa Prefecture. "Until then, the use of painkillers had been shunned in the medical community, with some skeptical doctors even arguing that pain should not be alleviated because that would make it harder for them to monitor the advance of the illnesses."
A quarter of a century later, the perception of pain control for cancer patients as being addictive and ineffective has greatly declined, if not completely vanished. The concept of palliative care -- where, in principle, no life-prolonging measures are carried out on terminally ill patients -- has also been accepted.
The number of institutions registered as offering palliative care in Japan rose sharply in the late 1990s and, as of Oct. 1, stands at 151.
Unlike in other countries, hospice-care recipients in Japan have been limited to sufferers of terminal cancer and HIV, and most places only house cancer patients, due to the low number of HIV patients, according to doctors involved in the field. Apart from a few exceptions, most of the 151 institutions are maintained by hospitals as "palliative care units."
St. Luke's International Hospital in Tokyo's Tsukiji district opened one such unit in 1998. Doctors, nurses, volunteers and other workers offer both inpatient and outpatient care, and even go out to the hospital's other wards to help ease the physical pain of cancer patients in the early stages of their illnesses, said Dr. Akitoshi Hayashi, director of the palliative care department. Hayashi added that his ward is unique in that it carefully administers prescribed opium and morphine to not just palliative-care unit patients but also people who are still being aggressively treated for cancer -- thus helping correct the erroneous image that palliative care is only for the dying.
Peace House Hospice is only one of the four independent hospices in the nation. The two-story facility, nestled in a quiet mountainous area of eastern Kanagawa Prefecture, could be mistaken for a resort hotel. Doctors and nurses wear ordinary clothes. Patients can smoke on a first-floor terrace whenever they like. A library is available for browsing and borrowing. About 90 volunteers help out, taking care of the building's many plants and flowers, and tending to patients' daily needs, be it a casual chat or pushing them around in wheelchairs outside.
For many of the existing palliative-care units in Japan, however, the level of care needs great improvement, experts say.
In 1990, the government started allowing patients in palliative-care units that met certain conditions to claim costs under health insurance plans. Over the years, the fees have been raised to 37,800 yen a day per person, plus expenses for meals. The financial incentives have triggered a rush among some hospitals to open PCUs, as they realized how lucrative PCUs can be, says Dr. Ko Kawagoe, director of Home Care Clinic Kawagoe.
A longtime advocate for home-based hospice care, Kawagoe questions the quality of care at some PCUs. "In Japan, there has been a misconception [among health-care professionals] that all problems with terminal care can be solved by just building PCUs," he said. "There are PCUs that don't even have volunteers or volunteer-training programs, even though volunteers are an essential part of hospice care."
Kawagoe has in recent years spearheaded a movement to shift hospice care from hospitals to homes. Kawagoe himself is on call 24 hours a day, aside from regular, scheduled home visits provided by a team of care-providers including him, nurses, pharmacists, home-helpers, aromatherapists and spiritual counselors, as well as volunteers. In 2004, the group Pallium, which includes his clinic and a nurse-dispatching center, cared for 108 terminal-cancer patients.
Traditionally, family members, especially daughters and daughters-in-law, have carried the burden of caring for their sick parents and relatives. With the emergence of doctors such as Kawagoe, the negative image associated with caring for the sick at home -- once called kaigo jigoku (nursing hell) -- is gradually fading.
A network of home-hospice care is gradually developing across the nation, thanks to the efforts of citizens. Atsuko Fujita set up a nonprofit organization called Pure, in Chiba Prefecture in 2001, following her own experience of scrambling to find doctors willing to let her cancer-afflicted husband spend his final days in their home. Her group now provides telephone counseling twice a week on how to administer home-based hospice care, and holds regular workshops for doctors, nurses, volunteers and the public.
"My husband always really enjoyed his occasional overnight stays at home," Fujita said. "When you are at home [and with your pain under control], you can put your things in order or make phone calls to your friends.
"And nighttime is most important. For many patients, fear often intensifies at night. At hospitals, visitors are turned away after 8 p.m. At home, there is ample time to talk. Such talks, no matter how trivial, are truly precious for family members, giving them new insights on life and spirituality."
