Hospice care 'When days cannot be added to life, add life to days.' The guiding principle of the Society for the Promotion of Hospice Care in Hong Kong calls for the provision of the best care possible for people in the final stages of an incurable disease. Hospice is a concept that dates back to the centuries-old idea of offering a place of shelter and rest, or hospitality, to sick and weary travellers on a long journey. It is not easy to find comfort in one's last days. Hospice services in Hong Kong are not catching up with the number of patients dying every year, said Cecilia Chan, executive committee member of the Society for the Promotion of Hospice Care. 'The hospitals are not respecting this profession. There are not enough training positions in this field,' she said. For all their dedication, hospice nurses come under enormous strain taking care of terminally ill patients. 'We need to respond to patients' sorrow, fear, depression, existential questions, psycho-spiritual distress and other such issues associated with approaching death,' said Cecilia Kwan, chairwoman of the Hong Kong Hospice Nurses Association. Hospice nurses also expend a lot of physical energy providing bedside care to patients who are almost totally dependent on them for their daily activities; and have to cope with intense emotions and separation all the time. 'Death is an almost everyday event,' Ms Kwan said. While the hospice programme in Hong Kong includes in-patient service, home care, day care, bereavement counselling and out-patient clinics, the provision of these facilities is still insufficient. For example, according to Professor Chan, scarce home care resources means that a lot of the time dying patients have to be rushed back to hospital and be dependent on hospital care. 'If patients can be taken care of by family doctors who are trained in palliative care, they can stay at home and won't have to robbed of their quality of life,' Professor Chan said. 'Those who are relatively well, with symptoms under control, should be encouraged to remain at home so that they can enjoy family life and a home environment.' But staying at home means being looked after by an informal caregiver, often a family member, which entails its own set of issues. Derek Doyle, founding member and adviser of the International Association for Hospice and Palliative Care, said: 'Patient-centred care must not exclude the relatives, but who is to give the care [to the relatives] and how?' A 2003 study on 'The Difficulties faced by Informal Caregivers of Patients with Terminal Cancer in Hong Kong and the Available Social Support' showed all but one of the 21 primary informal caregivers surveyed perceived difficulty in providing care. Many of the issues were emotional and linked to their relationship with the patient and their own reactions to providing care. The physical demands of caring for a terminally ill person and the restricted social life that this entails also contributed to making their job an unenviable one. However, a majority of the respondents said they appreciated the support they received from home care nurses, particularly in the areas of skills training, provision of information and emotional support. The Hospital Authority has 253 beds available for palliative care in 10 hospitals: Bradbury Hospice, Buddhist Hospital, Caritas Medical Centre, Grantham Hospital, Haven of Hope Hospital, Our Lady of Maryknoll Hospital, Tuen Mun Hospital, Ruttonjee & Tang Shiu Kin Hospital, Sha Tin Hospital and United Christian Hospital.