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Why Hong Kong needs to become a much better place to die, not just to live

For Natalie Banday, having her father, Cirilo, spend his last days at the Haven of Hope Sister Annie Skau Holistic Centre was a relief. It allowed them to share a few more happy moments before he died in August of lung cancer. On her smartphone, she has a video of his 81st birthday celebrations in the hospice, his family singing Happy Birthday, with cake, pizza, presents and balloons – a loving memory they will all cherish.

Tseung Kwan O care centre brings love and care to terminally ill patients

The hospice, on a hill above Tseung Kwan O in Hong Kong’s New Territories, provides a tranquil environment, in stark contrast to the public hospital wards crammed with other dying patients and lacking any privacy.

At the Haven of Hope centre, staff strive to make terminally ill patients as comfortable as possible, giving support to them and their families and preparing the latter psychologically for the inevitable loss.

The hostel was started 10 years ago in memory of Sister Annie Skau, a Norwegian nun who founded the Haven of Hope Christian Service in Hong Kong the 1950s, helping refugees living in Rennie’s Mill (nowadays known as Tiu Keng Leng) with health care, psychological, social and spiritual needs.

“It was the little things that mattered,” Banday recalls of her father’s stay in the hospice. “Nurses asked him what music to play, as he used to be a musician playing in hotels here. It made him relax and brought back memories.”

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The complex has 100 beds, but only 30 are dedicated to hospice care. The rest are for long-term and geriatric patients. Dr Antony Leung, who helped set up the hospice, plans to increase the number of beds to 40 when an extension goes ahead, but this is a drop in the ocean, he says.

Some 45,000 people die every year in Hong Kong, government statistics show, but Leung says there are only 360 hospice care beds in the city. Most are in public hospitals; Haven of Hope is one of three non-government-funded hospices.

“Hong Kong is an ageing society. Currently 15 per cent of the population is 65 years and older,” Leung says. “In 2035, that will double to 30 per cent, or about 70,000 dying per year.”

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Although many people would probably prefer to spend their last days in the privacy of their own home, the situation can be complicated for those left behind. By law, when someone dies at home in Hong Kong, a doctor must visit to sign the death certificate, and the death must be reported to a coroner, who may possibly conduct an autopsy if the case is considered suspicious.

Hospices allow people to die in dignity, however, and Haven of Hope offers holistic care, with a team of professionals looking after each patient and their families.

“I have realised the importance of having true integration between medical and psycho-social care,” Leung says. “We assign a chaplain, or social worker, to see the patient together with the doctor when they are admitted. We work as a team.”

Several of the hospice’s rooms have four beds, some two, and there are a few single rooms. Twelve beds are funded by donations so that charity cases, like Banday’s father, can be taken in. He had been assessed by a social worker and recommended to Haven of Hope, something for which his family was very grateful.

When a patient is close to death, Leung says, they can no longer use the toilet, so are moved to a special room, where they can pass away in a private space with family members around them.

“This further improves their quality of life in the end, to make sure the patient dies in a peaceful environment with loved ones. I have witnessed the most beautiful deaths when the family sings hymns to them as they sleep and pass away,” Leung says.

He has seen some patients face death courageously, reconciling broken relationships with family members and friends. “They find peace and spiritual growth, and it has taught me to become a better person, to find peace with physical death. To find true inner peace at the end of your physical life, you need to reconcile with yourself, your family and God,” he says.

Banday’s father spent his last three days in the private room, giving the family time to say their last words. It gave them privacy needed to say things that might not be said in a hospital, she says.

“My mum vented, regretting things she had done to my dad, and that room gave her the chance to cry and shout, whereas in a hospital ward you would probably be too shy to do that. It meant a lot to us because there were some things my dad may have wanted to hear or say, like saying sorry, and that helped us with his passing,” Banday says.

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Leung, who was trained in Britain, says palliative care in Hong Kong has improved in the past 20 years. However, it ranked 22nd in the 2015 Quality of Death Index compiled by the Economist Intelligence Unit. Other places in Asia-Pacific – Australia, New Zealand, Taiwan, Singapore, Japan and South Korea – were ranked higher.

Although more doctors and nurses have become interested in palliative care, Leung says more psycho-social support would help improve services.

When he set up the hospice 10 years ago, he wanted to do something he was passionate about before retiring, he says. “It is an honour and a privilege to accompany patients on their last journey. Good end-of-life care brings dignity and comfort to the family. Working in this field has made me more at peace with my own mortality. Being mortal is universal, but no one likes to talk about it.”

The planned extension – which will add up to 150 beds in total – will cost an estimated HK$450 million, and fundraising will begin next year.

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His plan is to have more single and double rooms for hospice care once it is completed.

“Hong Kong is an affluent society. In terms of hospice units, the UK is number one in the world, with the most single or double rooms,” Leung says. “Imagine when you come to the end of your life, you will want more privacy and want to have your family to stay with you. A good farewell is not only important for the dying person, but also therapeutic for the grieving family. We should embrace the last journey with love. It’s not just the physical environment, but the whole approach.”

Meanwhile in Sha Tin, the Jockey Club Home for Hospice will open next month with 30 single rooms.

Professor Joanne Chung Wai-yee, dean of the faculty of liberal arts and social sciences at the Education University of Hong Kong, helped consult on the project. She was a hospice nurse in the early 1990s, providing home care services in Sham Shui Po.

“Family members can feel guilty when they cannot give the best care, and see their loved ones in pain. Empathy is important, not just for the patient, but family members too. I try all means to seek different methods to relieve the suffering. Sometimes it’s just about sitting there and staying with them, holding their hand and listening to them,” Chung says.

She says for some, the pain they are feeling can make them contemplate things they may have done wrong in their lives. Helping them reconcile puts them at ease.

“We get them to look at their concerns from different angles. Some are good, some bad, so we try to focus more on the good things. At the terminal stage, they have conflicts and we help them through it. We help them analyse why they are concerned about something, or a specific relationship with someone, or money-related issues.”

Chung says there needs to be more education in the community with regards to hospice care – and even children in primary schools should learn about the cycle of life.

“In the past, people didn’t want to talk about death, it was taboo. But in the past 20 to 30 years people have become more open about it thanks to programmes on television and the internet. It’s about time we talked about it. We usually link death with something horrible.”

In some cases, bedridden elderly patients may cry out that they want to die, Chung says, and she helps them reorganise their thoughts. “You have to get them to elaborate on what it means. Sometimes they don’t know, it might be because they feel lost or frustrated.”

She says it’s important for people to have a “living will” prepared when they are still of sound mind, indicating who will take care of them and what medical care they want provided when they become incapacitated. Family members need to know about it so the best care can be provided for the patient. “People have a right to a peaceful death,” Chung says.

Article source: http://www.scmp.com/lifestyle/health-beauty/article/2049186/why-hong-kong-needs-become-much-better-place-die-not-just