Handling with care
Gaunt bodies ravaged by debilitating illnesses, bed-ridden patients groaning in pain, and grief-stricken relatives about to lose their loved ones: these painful images would make most of us wince. But for palliative care nurse Rachel Ho Yin-fun, it's all in a day's work.
For years she had worked at the gynaecology ward of Prince of Wales Hospital in Sha Tin. In 2005, a woman in her 40s - a cervical cancer survivor admitted for a series of routine health check-ups - asked Ho every day if her health report was ready. Too busy with work, Ho could only tell her that it wasn't.
When the woman finally received the report, it showed that her cancer had relapsed. She checked herself out of hospital without the doctors' approval and killed herself the next day. This tragedy motivated Ho to transfer to Bradbury Hospice in Sha Tin, to devote her time to tending to the terminally ill.
'I felt so bad that no one was there to take care of her emotions,' says Ho. 'I wanted to do something that could lessen the physical and psychological pain of patients, and accompany them in their final journey in life, giving them support and hope.'
Together with a partner, she is in charge of 80 patients in Sheung Shui and Fanling, visiting five patients at their homes every day. Ho treats symptoms and assesses conditions to see if a change of medication is needed. She also counsels family members who may suffer from emotional problems, even after their loved ones have died.
Ho is one of about 200 full-time home-care workers for the terminally ill under the Hospital Authority. According to the authority, 15 public hospitals provide palliative care services, with more than 300 hospice beds. As more than 40,000 people die in the city every year, doctors in palliative care say the demand for hospice services far outstrips supply.
A comprehensive hospice system is also lacking. In a 2010 survey by Britain's Economist Intelligence Unit that measured the 'quality of death index' in 40 places, Hong Kong ranked 20th, behind Taiwan (14th) and Singapore (18th). Britain, where hospice care originated, topped the list.
With demand rising because of an ageing population and increasing longevity, more needs to be done in this health care area. Palliative care's importance was highlighted in the World Health Organisation global brief for last Saturday's World Health Day, themed 'Good health adds life to years'.
'We need to ensure that everyone can live with dignity until the end of their life. Yet in many countries, access to effective pain relief is extremely limited and millions lack access to palliative care,' states the WHO report.
The benefits of palliative care on patients' well-being and life expectancy are well researched. A study published in 2010 in the New England Journal of Medicine followed 151 lung cancer patients at Massachusetts General Hospital in Boston. The 74 patients who received standard oncological care survived for a median of nine months. The others, who received standard care and visited the hospital's outpatient palliative care unit within three months of diagnosis, lived for nearly a year.
Decked out in warm colours and soft furnishings, Sha Tin Hospital's palliative care unit is filled with the clatter of mahjong tiles and music. Occupational therapists and physiotherapists help patients stretch muscles for rehabilitation.
Wheelchair-bound Man Wai-ling, 50, who has metastatic breast cancer that has spread to her bones, credits the centre with lifting her spirits. She has been going there for physiotherapy twice a week since August.
'There was a time when I dreaded going to hospitals. I was afraid of all those tests. When my family came to visit me, I grimaced and scowled, which added to their unhappiness,' says Man. 'But my fellow patients here don't look ill at all. I have learned to be positive as I don't want my family to be upset any more.'
Her sister and primary carer, Man Cheuk-yu, 56, a cancer survivor, was taught how to take care of her sister by the centre's doctors and nurses. '[Wai-ling's] condition has greatly improved. And I am supported by the service, too,' Cheuk-yu says.
Dr Raymond Lo See-kit, consultant in geriatrics and palliative medicine at Sha Tin Hospital and Bradbury's chief of service, says the scope of palliative care has widened over the years.
In the beginning, it was confined mostly to terminal cancer patients. Hong Kong's first palliative care medical team was set up at Our Lady of Maryknoll Hospital in 1982. The Society for the Promotion of Hospice Care was formed in 1986, and six years later, it started Bradbury, the city's first and only stand-alone hospice.
The Hospital Authority took over the operation of Bradbury in 1995 and, in the following years, developed palliative care services in public hospitals. The society helps train those hospice workers and, through public education, also works to erase taboos linked with death. Since 2010, Lo says Hospital Authority palliative care services have been extended to end-stage organ failure patients.
Dr Lam Po-tin, head of the palliative care unit at United Christian Hospital in Kwun Tong, visits two patients' homes a week with another doctor and nurses.
Lam says the unit, with about 10 day-care places and 15 hospice beds, provides pain management not available in ordinary wards through medication and collaboration with pain management specialists and anaesthetists. 'But given the limited number of places, many patients die without receiving palliative care treatment,' Lam says.
Misconceptions about palliative care are another hurdle. 'When we suggest palliative care to family members, they think that we are giving up on the patients,' says Lam. '[But] early palliative care can bring a huge difference to the welfare of the terminally ill. Depending on the disease, a patient can live for months or years after diagnosis.'
Lo says Bradbury advocates earlier provision of palliative care - from the time patients are diagnosed with an incurable disease. 'Instead of being a pessimistic treatment, palliative care is filled with optimism ... Some patients tell us that their time in our unit is the best time of their lives.'
Andy Ho Hau-yan, a research officer with the University of Hong Kong's Centre on Behavioural Health, says the city has a long way to go before it catches up with the West in terms of hospice care, partly because of a lack of co-ordination between health care workers that deprives Hongkongers of the right to die with dignity. He says that 'do not resuscitate' statements signed by patients are not legally binding in Hong Kong. Doctors, therefore, make decisions for the patient at their discretion. Ambulance staff will also do their best to keep the patient alive for fear of being sued.
Ho also says that patients are not allowed to die at home in Hong Kong, unlike in the West. Family members or homes for the elderly have to send for an ambulance to get the dying patient to hospital. Corpses at hospitals are put in crowded morgues, with some subject to the 'further indignity' of an autopsy. 'All these add to the trauma of families,' says Ho.
Undoubtedly, more can be done. But whatever little the city has at the moment has helped.
Wong Ya-yee's husband, 80, was transferred to Bradbury two months ago. He had had a stroke in August, and after his condition started to deteriorate in November, Ho started visiting the couple at their home every day.
'He was happy to come here,' says Wong, 65. 'With the cosy setting and caring staff, Bradbury is like a resort. His condition improved. Due to his bulky stature, we couldn't bathe him for months, but he got frequent baths here. My husband passed away peacefully last month, surrounded by family.'