Speech by Minister of State for Health and Manpower Dr Amy Khor at the HCA Hospice Care Star PALS’ launch, 20 Oct 2012

Speech by MOS for Health and Manpower Dr Amy Khor at the HCA Hospice Care Star PALS’ launch, 20 Oct 2012

Dr Seet Ai Mee, President, HCA Hospice Care

Distinguished Guests

Ladies and Gentlemen

1    A very good afternoon. Since 1989, HCA Hospice Care has been providing adult home palliative care from their central headquarters at Jalan Tan Tock Seng, as well as four other satellite centres spread across Singapore. The five multidisciplinary teams served approximately 3,000 patients in 2011. This is an amazing number considering the physical, emotional and medical difficulties of patients who require such pain management and end-of-life care. Today, we celebrate a worthy cause as HCA Hospice Care launches a new and novel service to support children at home with advanced medical conditions.

Introduction

2    Caring for a family member living with, or dying from, advanced illness can be very challenging, as the patient and caregivers struggle to face progressing illness, and at times disability towards the end-of-life. HCA had estimated that more than 160 children can benefit from home palliative care every year. The needs of these children and their families may be different from that of the adult population, and require specially tailored services. While community capabilities for adult palliative care have evolved over the years in Singapore, palliative care for children is still in its infancy. We will therefore need to develop a cost effective model of care for children.

HCA Star PALS – Novel Model for Palliative Care of Children

3    HCA Hospice Care is piloting an innovative home palliative programme to support children and teenagers aged 19 years and below. While some may be ill with advanced or relapsed cancer, others struggle with overwhelming disabilities requiring 24/7 care at home. The Star PALS (Paediatric Advanced Life Support) programme offers support with a clinical multidisciplinary team, comprising doctors, nurses, counsellors, therapists and medical social workers, who would bring holistic palliative care for the child and the child’s family to their own homes, reducing unnecessary travels and admissions to the acute hospitals.

4    Two novel service elements are included in Star PALS. Firstly, patients may benefit from physiotherapy, occupational therapy and speech therapy. For example, chest physiotherapy can be provided for those with chronic chest problems; and dieticians can provide nutritional advice for tube-fed children. Secondly, Star PALS also aims to relieve the tremendous burden of caregiving by providing short respites at home using a group of specially trained care staff called medi-minders. This holistic paediatric care model can only succeed in collaboration with other partner organisations, such as the paediatric units in acute hospitals like KKH and NUH, alongside social services such as the Children’s Cancer Foundation (CCF). Through this , Star PALS hopes to create a strong infrastructure in the community to support these children and their families in time of need.

5    Let me illustrate Star PALS’ work with an actual patient story that they have shared with me. Recently, Star PALS supported a boy, let’s call him Louis. He was a lively three year old boy when he suddenly developed a squint. The diagnosis was a brain tumour. His parents were told he needed radiotherapy to slow the growth of the cancer; and even with treatment, he had less than a year to live. You can well imagine how distraught his parents would be over such devastating news. The desperate search for an alternative treatment began. Louis was placed on an experimental therapy but after a brain surgery where he almost lost his life, Star PALS was finally introduced to the family, one and a half years after he was first diagnosed.

6    Over the next six months, Star PALS guided the family to deliver the delicate care that Louis needed, at home. He was able to recuperate in the comfort of his home, with his parents by his side. Emergent issues and treatment decisions were discussed over coffee in their home or over the phone. In consultation with his parents, Advance Care Plans to define management if Louis were to turn critically ill were also written up. Eventually, Louis died peacefully at home last month, surrounded by his whole family, including the grieving helpers.

7    Nothing can diminish the pain and the grief that comes from such heartreaking situations. But, at the very least, instead of seeking intensive, possibly intrusive, uncomfortable and costly treatments, Star PALS enabled the family to spend quality days together till the last moments of Louis’ journey.

8    I am glad to note that with the help of Tote Board Community Healthcare Fund, HCA will be able to run this three-year pilot., with a total of $3.1 million to cover 80% of their cost. HCA Hospice Care will also look to the public to support these children through donations.

9    Since April 2012, HCA has increased their Star PALS team to five service staff who can serve over 20 families at any one time. These families can now look forward to spending more time with their loved ones at home rather than in the hospital. Advance care plans could be made more consistently to honour the wishes of patients and their parents in relation to medical management at the end of life. The pain of bereavement would at least be assuaged without interruption by the same team which in Louis’ case, had supported the whole family throughout the entire illness. We can all look forward to HCA’s expanded programs as they continue to build up their capacity and care quality to serve at least 60 patients per year.

Strengthening Palliative Care in the Community

10     Today, we have five MOH-subvented home hospice providers, serving about 3,900 patients across the island each year. We will continue to explore ways to extend the scope of our home palliative care services to more patients. For example, Agency for Integrated Care’s Holistic Care for Medically Advanced Patients (HOME) programme aims to extend palliative care beyond traditional cancer care to benefit more non-cancer patients, in order to support the increasing demand for such from end-organ failure type patients. The programme comprises a multidisciplinary team of doctors, nurses and counsellors to provide 24/7 coverage to the patients. They provide good end-of-life care at home to patients suffering from heart, kidney and lung failures. Experience has shown some success in reducing unnecessary hospitalisations and ED visits.

11     Dover Park Hospice’s (DPH) integrated home hospice care programme aims to improve the coordination of care across care settings and reduce fragmented service delivery for their patients within the central region of Singapore. They have observed that patients who need to cross care settings belonging to different organisations would have to be discharged from one before admission into another. There is no central body responsible for the care of the patients transferring across settings. This often leads to poor coordination of care whereby some patients are over-served or under-served by organisations. In their pilot, DPH will take ownership of their patient’s care plan in the whole continuum of care.

Conclusion

12     We hope that with better home palliative care services, our people’s quality of life will be improved, and it will also help reduce the suffering for people with advanced illnesses. This is especially important for terminally-ill children and their families. As we live well, so we can also die well. This is a noble aim for those of us in palliative care.

13    Today's concert feature young talents in support of the Star PALS initiative. We look forward to the development of the HCA's Star PALS programme to assist Singapore in developing a strong community-based programme for paediatric palliative care. It is a worthy cause, and I urge you to support it heartily.

    Thank you.