After a day’s hard work, the first thought that pops into our head is usually to lie down on the sofa, watch TV, take a shower, or simply do nothing at all – anything to feel relaxed at home. However, what if your entire lifetime is compressed into such a day of hard work? How then would you like to take a rest? Would you prefer to stay at your familiar home surrounded by family as you say your goodbyes? Or would you prefer to rely on a machine to prolong your life?
Home Is the Best Destination
According to a survey, more than 80% of end-of-life patients wish to die in peace at home. Home not only makes us feel safe, but also provides a shelter for everyone. When it comes to the last phase of our lives, our homes provide us with more autonomy, privacy, and dignity.
Taiwan has been actively promoting community-based palliative care in recent years, as palliative teams pay regular visits to patients so patients do not have to make frequent trips to and from the hospitals. Thus, by avoiding unnecessary medical visits and treatments, more quality time is made available for the families, which in turn allows the concept of “dying well” to be realized.
Dr. Enoch Lai from Mackay Memorial Hospital stresses, “Most people think you can only receive palliative care when you are staying in the palliative ward. This isn’t true. Palliative care does not refer to the tangible hospital facilities, devices, or equipment, but rather, to a form of ‘software’, an attitude to life, and a way of caring for the terminally ill patients”.
When a terminally ill patient is given a notice that they have fewer than six months of life remaining, the aim of palliative care is neither to cure the disease nor accelerate or slow down the death process; but rather, the aim is to ease the symptoms and to support patients and their families by providing spiritual care to improve the quality of life. This is why Dr. Lai calls palliative care a kind of software. It doesn’t require physical wards or doctors, but all it takes is a certain mindset, which can then be applied to every specialty and routine care of terminally ill patients.
A Quality Life Free of Pain
Palliative care has developed from within the hospitals wards to the patients’ residences, and now it even expands to shared care and community care; as such, it has transformed into a “software” format. That is, no matter where the patients are seeking assistance from, as long as palliative care is needed, the palliative team will bring and ensure a good and pain-free quality of life. This team includes doctors, nurses, social workers, nutritionists, and volunteers.
Dr. Lai points out that since 1990 when Mackay Memorial Hospital first set up the palliative care ward in Taiwan to promote this new concept, palliative care has evolved extensively in order to meet the patients’ needs.
Palliative Care Fit for Local Culture
Mackay Hospice and Palliative Care Center was established in hope of providing palliative care for terminally ill patients. The professional training courses for palliative care staff started the same year, and they have developed an unique style that best suits the Taiwanese culture.
“Newborn births are welcomed by family members, and so it should be when it comes to the departures of people we love,” explains Dr. Lai. The Taiwanese Department of Health started promoting palliative care at home in 1996, and it was thought that this home care version of palliative care would meet the expectations of Taiwanese families, but it proved not to be the case. Due to urbanization, patients normally stay at home while their family members are out and preoccupied with work. Besides, as influenced by the period of Japanese rule, people still believe patients should only return home when they have recovered from illnesses. Therefore, dying at home was not a common or acceptable idea for people at that time.
According to the statistics in 2000, only 7.5% patients died at home or in a hospice ward; this number grew to 14% three years later, but the result is obviously limited.
With more effort being put into the promotion of palliative care at home, especially through personal experiences and stories in the media, more people are feeling curious about palliative care and are opening their hearts to this concept.
In 2004, the Taiwan Ministry of Health and Welfare and the Taiwan Hospice Organization started promoting Hospice Shared Care Service, which has allowed terminally ill patients to receive
palliative care even when they are no longer staying in the hospice ward. Thus, the palliative care team works with your current medical team to ensure a proper and complete end-of-life care.
With the backing of governmental policy, patients who have received palliative care have risen to 40% in 2011 and to 51% in 2012.
The development of palliative care has now become diversified, from hospital wards to homes, to shared care, and even to communities and nursing homes, which are working with appointed hospitals to have regular palliative care team visits.
Dr. Lai suggests that palliative care can be adapted easily to fit various needs. He says, “As long as we can bring peace to terminally ill patients’ minds, then it is the ideal place for receiving palliative care. It doesn’t have to be a specific location.”
In the “Age of Great Harmony,”it describes that the ultimate goal for achieving this Great Harmony is to “provide for the old until their death”.“With our lives approaching the terminus, not everyone is choosing the same terminus; palliative care is just one of them”, Dr. Lai concludes. As respect for an individual’s autonomy is rising, future legislation is expected to ensure terminally ill patients with the right to have a say with their own lives.