HKU Bulletin May 2015 (Vol. 16 No.2)

If you ask people where they want to die, of course they say at home… [But] who is going to take care of them? Professor Cecilia Chan There are many, often poetic ways to describe death – shuffling off the mortal coil, venturing to the Yellow Springs, giving up the ghost, joining the invisible choir, to name a few. But a reluctance to talk more forthrightly about this inevitable journey, particularly in Chinese society, means people may die in a manner out of tune with their wishes. HKU scholars are trying to break down the barriers to reaching a peaceful end. PRELUDE TO DYING journey – or they can be. Our job is to make sure that they are so, rather than a terminal decline and wait for the inevitable.” Dissonance in end-of-life care Achieving a brilliant end is a challenge in modern-day Hong Kong. The breakdown of the extended family and long workdays for the healthy mean that patients with chronic or terminal illnesses, such as dementia or cancer, need outside assistance. “If you ask people where they want to die, of course they say at home,” said Professor Cecilia Chan, Si Yuan Professor in Health and Social Work, Head of the Department of Social Work and Social Administration, who has been studying end-of-life care and death in Hong Kong for two decades. “But when you have someone who has high dependency or terminal illness, who is going to take care of them? We are very lucky to have domestic helpers here, but fewer and fewer of them are willing to work with the elderly.” Seven per cent of Hong Kong’s elderly live in nursing homes, one of the highest proportions in the world. Most of the staff are not trained properly in caring for terminally-ill patients and for even the most minor ailments, they want hospitals to handle it. “If a terminally-ill resident has a fever, the first thing the nursing home will do is ship them off to hospital. This creates a lot of trauma and physical and psychological pain for the resident because they have to leave an environment they are familiar with for the cold and unfamiliar hospital environment,” said Dr Andy Ho, Honorary Lecturer of the Department of Social Work and Social Administration and Honorary Research Fellow at the Centre on Behavioural Health and Sau Po Centre on Ageing. Dr Ho has conducted two pilot projects on end-of-life care involving clusters of nursing homes and their nearby hospitals. Nursing home staff received basic training on treating symptoms such as fever. If the patient did not improve and needed further care, they were sent to the hospital under an expedited pathway that bypassed the usual registration procedures and the acute ward to admit them directly to the palliative care unit. Advance care planning was also arranged, so patients could let the nursing home and hospital know about their wishes and concerns in advance. This not only honoured the patient’s final wishes – something Dr Ho verified in interviews with the families of patients and staff in the nursing homes and hospitals – it also saved on hospital resources. “Without an advance care directive in place, patients with terminal illness can end up in emergency wards where the medical staff will do whatever treatment they can to save lives,” Dr Ho said. These treatments can be invasive, unwanted – and expensive, something that has to be an important consideration given the ageing population and rising costs of healthcare. Harmonising with patients’ wishes Advance care planning allows individuals to indicate treatments they would and would not want in the event of loss of capacity, such as irreversible coma. In Hong Kong, the Law Reform Commission has produced a non- statutory form that patients may complete, but as yet a system to coordinate and communicate patients’ wishes among nursing homes, emergency services and hospitals has not been developed (Dr Ho’s projects were one-offs). Marie Kobler, Research Officer in the Centre for Medical Ethics and Law, arrived at HKU two years ago from the United States where she worked as a healthcare attorney. “For seriously-ill patients, the United States is moving towards an addition to advance directives called ‘POLST’, which are actual physician orders for life-sustaining treatment. While not for everyone, patients nearing the end of life can request specific orders – such as comfort care only or no artificial nutrition by tube – and these are kept on record to avoid any possibility of mistakes,” she said. “There has been a lot of discussion in Hong Kong about whether people are ready to embrace the process of advance care planning, whether they are comfortable talking about death. Certainly a number of studies say emotions around caring for those who are dying, and understand that this, too, is a part of life. “Dying is living and living is dying. We are on the road to death the minute we are born,” the Dean of Medicine, Professor Gabriel Leung, said. “The last days of a patient’s life are often like a musical cadenza. They’re the most brilliant part of their whole person can find themselves in an acute hospital ward subject to extraordinary measures to keep them alive, rather than a calmer palliative environment or even at home. Researchers at HKU have been studying the problem from the perspective of everyone involved – patients, families, nursing homes and medical staff – to help people express their wishes, reconcile the profound What is a good death? Minimal pain and suffering in the company of loved ones, to be sure, but maybe there is something more: a sense of control over how we spend our final days. In a city where more than 90 per cent of people pass away in hospital, such an ending can be difficult to achieve. The system is such that those with terminal illnesses in particular Dr Ho (right) holds life-and-death education workshops for medical staff in hospitals. Dr Ho's team carries out a great variety of community life-and-death education programmes, including the palliative care programme in Noah Art. 06 | 07 The University of Hong Kong Bulletin | May 2015 Cover Story