Hospice care for the terminally ill

“I wish to work with you hand in hand because we are all dedicated to helping people who have nowhere else to turn to. This programme will be in place for not just a year; it will go on until the Mainland becomes more affluent and more capable of taking care of its terminally ill patients. My commitment to the advancement of education and medical care will go on beyond my lifetime.

Cancer patients have made contributions to society. I hope to help alleviate their suffering as much as possible so that they can live out their remaining days with dignity.”

— Li Ka-shing

IN NOVEMBER 1998 MR LI KA-SHING set up, with a personal donation, the first hospice in Mainland China at the First Affiliated Hospital of the Shantou University Medical College. Before then, hospice services and palliative care – virtually unexplored territory in Chinese medical history – were unavailable in Mainland China. At the time, the facility was the only provider of free hospice care for impoverished cancer patients at home, offering pain alleviation, psychological counselling, life ethics and other forms of terminal care. Falling within the realm of social work, hospice services go beyond the confines of purely medical care. Although patients can not be cured, hospice care allows them to live their remaining days in serenity and love.

As defined by the World Health Organisation, palliative care “affirms life and regards dying as a normal process, intends neither to hasten nor postpone death, provides relief from pain and other distressing symptoms, integrates the psychological and spiritual aspects of patient care, offers a support system to help patients live as actively as possible until death, and offers a support system to help the family cope during the patient’s illness and their own bereavement.”

One man’s compassion

The programme was inspired by personal experience. Mr Li went to a hospital one day to visit a friend suffering from cancer. Despite receiving the best possible care at this leading hospital in Hong Kong, his friend was still tormented by his illness and Mr Li was deeply moved as he watched his friend suffer. There are people on the Mainland who suffer from the same illness, he thought. If these patients are poor, their pain would be much harder to bear. He then started discussions with the Shantou
University Medical College about setting up the first hospice on the Mainland.

Many terminal-stage cancer patients on the Mainland suffer tremendous physical pain and psychological torment during the final stages of their lives. Most cancer patients with financial difficulties cannot afford basic analgesic medication and die in excruciating pain.

“Terminal-stage cancer patients are people who have once made a contribution to society, but now they are suffering agonizing pain,” said Mr Li. “Easing their pain, filling their thoughts with the best memories of their lives and allowing them to complete their final journeys in peace and with dignity is the best reward that we, the living, can give them.” This is the guiding principle behind the beginning of hospice care on the Mainland.

The Chinese name for the hospice, Ning Yang Yuan (literally “Peace and Care Hospital”), was Mr Li’s idea. He found it a more acceptable name for a hospice in a society where death remains a taboo.

Into a new era

The Ning Yang Yuan created a practical model for hospice care on the Mainland by integrating home and outpatient services. Patients and their families are given analgesic treatment, psychological counselling and information on palliative care through the Home, Consultation and Outpatient Services provided by the hospice. To reach out to a larger number of terminal-stage cancer patients who are unable to afford proper care, Mr Li made a further donation in January 2001 to set up the “Heart of Gold” National Hospice Service Programme, which now boasts a network of 32 major hospitals in Mainland China. The Programme has also been extended to Hong Kong’s cluster of eight public hospitals. Mr. Li makes annual contributions of HK$60 million to fund the operation, and has donated HK$400 million to date.

The 32 hospices employ 220 medical professionals and are spread across 32 cities in 26 provinces. To date, the programme has served more than 90,000 patients.

The launch of “Heart of Gold” has attracted extensive media coverage, arousing greater awareness and interest among the Chinese public, which in turn has generated more public concern for the physical pain and psychological trauma suffered by terminal-stage cancer patients.

Embracing the sunset together

“The work on the hospices will go on beyond my lifetime,” said Mr Li. “I hope members of the hospice staff will always offer their love and kindness to cancer patients.” Describing his dedication to the service of impoverished cancer patients as “timeless”, Mr Li expressed the hope that the hospice staff would share his enthusiasm and carry the torch for this worthy cause.

Despite his hectic work schedule, Mr Li tries to find time to visit hospice staff members and often writes letters to encourage them.

“Please remember that you never work alone. We are of the same mind with the same genuine desire to offer hospice care,” he wrote in one letter. “How noble your work is, to offer a dose of painkillers, a touch of human warmth and kindness to a person suffering from illness and pain, so that the physical torment is immediately assuaged
and the soul becalmed.

“It is said that after people die, they either ascend to heaven or descend into hell. However, to terminal-stage cancer patients in their last days, the immeasurable pain and torment that they suffer already feels like hell on earth. To all the medical personnel in the hospices who volunteer their love and kindness to these patients without expecting any reward, in the hope of lessening their pain, allowing them to regain their dignity and alleviating the mental anguish of their families; to all of them I say: You are the greatest.”

Physical and psychological needs

Mr Li pays close attention to the details of the services the hospices provide. His instructions state that they must use the most effective anaesthetics. “If there is a drug that relieves 90 per cent of the pain and costs $50, and another one that relieves 99 per cent but costs $100, I would rather buy the one that costs $100,” he said. “The most important thing is to ease the patient’s pain as much as possible.”

He also makes it very clear that vehicles used to make house calls must be washed regularly and medical personnel making house calls must project a lively, professional image when serving their patients. His concern for patients has had a profound effect on medical staff. Instead of lab coats, a number of doctors and nurses now take casual wear when making house calls because many families with terminally ill relatives do not want the neighbourhood to know that there is an impending death in the family.

Management of the hospices also reflects Mr Li’s entrepreneurial qualities. All daily expenditures are logged into Hospice Eye, an online monitoring system, giving a clear picture of where the money is spent. The system also includes other statistical data, such as records of medication consumed by each patient, helping in the research and development of palliative care.

More like-minded associates needed

Every year more than two million people in China develop cancer, leading to more than 1.4 million deaths. Mr Li believes that 32 hospices definitely are not enough. He knows he cannot do this alone, but he hopes that he has started the ball rolling and more people in the community will be encouraged to get involved. “If all of us do this together, we can achieve a lot. Nothing great will be achieved if I do this alone,” he said.

A pressing concern is the severe shortage of hospice medical staff. Palliative care has yet to develop into a full-fledged discipline on the Mainland and getting the Ministry of Public Health to recognise it as a legitimate field of study is the most important task at hand.

With the support of the Li Ka Shing Foundation, the National Hospice Service Programme has benefited an increasing number of patients since its launch some 12 years ago. However, demand still far outstrips supply. If the programme can be incorporated into the existing medical service network, more policy and financial support will be forthcoming. The programme will then gain greater influence in society and help the development of hospice care on the Mainland

”Our hospice service programme is helping 14,000 cancer patients every year. I hope that as our work spreads, more people will become aware of this pressing issue.”

The 20 hospices set up by the Li Ka Shing Foundation provide free standardised treatments.

Hospice care is a new type of medical service on the Mainland, and more needs to be done in a society where death is still a taboo subject.

NEW FREEDOM FOR THE NEEDY

ONE OF THE most common problems of terminal-stage cancer is pain. Pain must first be alleviated before one can even begin to talk about improving the patient’s physical and psychological well-being.

World Health Organisation (WHO) studies have shown that 70 per cent of cancer patients suffer pain, of whom 40-50 per cent suffer moderate and severe pain. In the 1980s the WHO launched a campaign, Freedom from Cancer Pain by 2000, which proposed using non-traumatic drug therapy to treat cancer patients individually according to a scale known as the pain ladder.

Freedom from Cancer Pain, however, remains a distant ideal for most cancer patients on the Mainland. The majority of terminal-stage cancer patients suffer excruciating pain. Painkillers can provide total pain relief for most cancer patients, but because many impoverished patients cannot afford basic analgesic treatment, they end their final days in misery, their bodies wrecked, their spirit broken. Pain and poverty deny them peace and dignity in their last days.

The 32 hospices set up by the Li Ka Shing Foundation on the Mainland provide free standardised treatments for cancer pain and complications arising from terminal-stage cancer. Not only are they a soothing balm to the destitute patients, they also alleviate the mental anguish suffered by patients and their families. They allow patients to reclaim their dignity and live each day of their remaining lives in peace.

At the hospice in Shantou, for example, each patient on average receives a free seven-day course of painkillers that costs around RMB300. The patient who underwent one of the longer treatment periods was a breast cancer sufferer who, over four years, received free analgesic drugs that cost around RMB23,000. Two other cancer patients with bone lesions were each given painkillers that cost around RMB12,000 over a period of two years. For poor families, such medical expenses are astronomical and completely out of their reach.

The free analgesic treatment given to cancer patients by the hospices follows the WHO’s three-step pain ladder. According to a telephone survey of patients conducted in 2009, 94% of patients experienced pain alleviation of 50% or more. After a doctor has conducted an evaluation, the pain is classified as mild, moderate or severe. Different medication is prescribed for each class of pain. Non-opioid +/- Adjuvants are used for patients with mild pain, while mild opioids +/- anti-inflammatory drugs and Adjuvants are prescribed to patients suffering from moderate pain. For patients in severe pain, strong opioids +/- anti-inflammatory drugs and Adjuvants are administered.

Hospices under the “Heart of Gold” National Hospice Service Programme

• Affiliated Hospital of Qinghai University
• Baotou Central Hospital, Inner Mongolia
• Beijing Cancer Hospital
• Chaozhou Central Hospital of Guangdong
• Dehong People's Hospital, Yunnan
• First Affiliated Hospital of Dalian Medical University
• First Affiliated Hospital of Guanxi Medical University
• First Affiliated Hospital of Jinan University Medical College
• First Affiliated Hospital of Lanzhou Medical College
• First Affiliated Hospital of Nanchang Medical College, Jiangxi
• Fujian Provincial Hospital
• Guangdong Medical College Affiliated Hospital
• Hainan Provincial People's Hospital
• Hunan Tumour Hospital
• Ningxia People's Hospital
• Second Affiliated Hospital of China Medical College
• Shaanxi People's Hospital
• Shanxi Tumour Hospital
• Shenzhen People's Hospital
• The Affiliated Hospital of Jilin University
• The First Affiliated Hospital of Chongqing University of Medical Sciences
• The First Affiliated Hospital of the Shantou University Medical College
• The Hospice of the Tumour of Harbin Medical University
• The Hospice of the Tumour of Xinjiang Medical University
• The Hospice of Zhongnan Hospital, Wuhan University
• The Third Affiliated Hospital of Xinxiang Medicine College, Henan
• Tianjing First Central Hospital
• West China Hospital of Sichuan University
• Xinhua Hospital Affiliated to Shanghai Second Medical University
• Yuebei People's Hospital of Guangdong