In 2003 Jan Phillips RN Traveled to: Hospis Malaysia – Kuala Lumpur, Malaysia
Travelling Fellow: Jan Phillips RN Oncology/Palliative Care. Moruya NSW Australia
Early in 2003 at the invitation of Dr. Ednin Hamzah CEO of Hospis Malaysia (HM) and with the support of IAHPC, Malaysia became my workplace as a Palliative Care Nurse Educator /Mentor for eighteen weeks.
Hospis Malaysia is a charitable organization which was established in 1991 with the aim of addressing the immense need for the establishment and provision of professional Palliative Care (PC) services for the Malaysian community. Hospis Malaysia has no affiliation with any political or religious organizations, nor is it memberd with any other health institution.
Hospis Malaysia Homecare Team
This is Hospis Malaysia’s (HM) main PC activity. The highly skilled PC Team of four Nurses, three Doctors (2 part time) and a Clinical Psychologist travel many kilometres each day attending to patients and their families. The Team meets each morning to report on the previous day’s home visits. Frequently, this also provided a problem-solving forum for challenging cases. Medical and Oncology Nursing Students regularly join the Homecare Team to experience first-hand the benefits that Palliative Care provides to patients and their families at home.
A 24 Hour On-Call Service complements this care and is available to patients and their families if difficulties or queries arise. Thus, all PC issues are covered by the team including on-going bereavement support where required. Fortunately, HM has a large contingent of skilled volunteers many of whom are very active within this Programme.
Palliative Day Care
Hospis Day Care & Day Care Occupational Therapy
This wonderful facility is conducted each Tuesday and one Thursday a month within the Hospis Malaysia centre for patients who are still physically mobile. Patient attendance varies: 18 patients were the maximum during my stay. Caring staff: one full time nurse plus several volunteers including a doctor, nurse, psychologist and several others with varying skills.
The atmosphere is warm and friendly with massage, various exercises, occupational therapy, quiet chats, music and laughter all happening to ensure that the patient’s overall quality of life is enhanced as well as enabling the carer (s) to have some respite time. The many services provided by HM are free and extended to all PC patients and their families irrespective of race, religion and social status.
The number of patients registered with this Programme in September 2003 was 170 with another five more referrals arriving on my last day. Referrals are received from specialists and general practitioners within Kuala Lumpur and at times from other regions if a patient is moving into the area to be cared for by family members.
AIMS OF MY VISIT
As there are no current Palliative Care Teaching/Training Programmes in Malaysia apart from those conducted by Hospis Malaysia, my being there was an opportunity to assist with education not only within Kuala Lumpur, but in other regions as well.
Annual HM Palliative Care Foundation Course as Facilitator / Educator
This three-day programme is held on an annual basis in collaboration with the Asia Pacific Hospice Palliative Care Network (APHN) for PC Doctors, Nurses, Allied Staff and Volunteers who are actively involved in caring for patients in either Hospices or Palliative Care Services in the many regions of Malaysia. Thirty participants attended this year’s course.
The main aim of this comprehensive workshop was to increase the participant’s self-confidence whilst honing their many palliative care skills. The workshop format focussed on small group tutorials, practical sessions and discussions. Both written and verbal feedback from all participants was very positive – all keen to be involved in any future workshops.
Dr. Rosalie Shaw (a regular facilitator of this Foundation Course) forewarned that whilst being involved in these workshops was immensely enjoyable and rewarding, she had always found the programme very tiring. Such was my Malaysian initiation – excellent preparation for what lay ahead in the months to come.
Assessment/Evaluation Skills – Palliative Care Nurses.
Whilst travelling around Malaysia was a frequent occurrence Hospis Malaysia was always my home to which I returned. During my time working with the HM Team there were many opportunities for me to conduct In-Service sessions, have one to one discussions with individual nurses on the various patient problems, participate in the daily Team Report as well as accompany the nurses on several of their home visits.
During these home visits, my aims were to observe and assess each nurse’s delivery of patient care, their assessment skills as well as their applied reasoning in developing an appropriate plan of management. As we were always travelling by car, discussing these issues before reaching the next patient was possible. Thus, I had the opportunity to develop close working knowledge of many of the nurses. The added advantage of getting to know a number of these patients and their families gave me a deeper insight into the enormity of their suffering and demonstrated to me just how much they appreciated the nurse’s visit.
On one occasion, a patient died whilst the nurse and I were with him in his home. This particular patient had been with the Service for more than 12 months and was loved by one and all at HM. Being given the privilege to wash and dress his body in his wedding clothes was one of the most moving experiences of my time there. He and I had laughed and cried together when he had attended Day Care and now we were saying our goodbyes. The nurse was very particular about the care given to him and his family both before and after his death. The wife and daughter were spoken to gently as he was dying and after whilst others were then informed of his death and subsequently, arrived to assist. My observation was that this patient died pain free and with dignity, surrounded by his loving family.
Palliative Care Education – Nurses and Volunteers.
Assisting in the further development and honing of PC skills with nurses and volunteers of the regional Hospice Teams was another of our aims. Each Team’s training needs were analysed by the Team leader and members prior to my arrival giving sufficient time for an appropriate learning programme to be developed.
Most programmes were in the form of comprehensive workshops with hands-on sessions, group problem solving and presentations incorporating role-plays Fun and friendship were in evidence and reflected on many occasions the shared vision of these multicultural PC Teams.
During my first visit with the Perak Palliative Care Society (PPCS) Home Care Team in Ipoh three days were spent observing the standard of home nursing care provided. High temperatures and humidity in very basic housing of corrugated iron do nothing to improve a patient’s comfort. Bed-bound patients reclining on makeshift beds in passageways in order to catch the slightest breeze were familiar sights. So much love was seen in the way families did, with what little they had, to make the patient comfortable. The nurse’s particular attention to the families’ problems and frustrations demonstrated her compassion
As was the case with all PC Teams, the workload was very demanding with volunteer assistance being required often to help these families. On-going support and debriefing for all team members including the volunteers was identified as crucial in maintaining effective and holistic care for everyone – patient, carers, doctor, nurses and volunteers. With Dr. Loh Ee Chin (Hospis Malaysia) we worked with the volunteers to discover what Effective Communication Skills they all had and to what advantage they could be used. Over 30 participants attended each day and their dedication and enthusiasm was amazing.
Upon completion of this Workshop, Dr. Rosalie Shaw and I travelled from KL to Ipoh by taxi (approx. 2 and a half hours) in order to begin the following Tour early the next morning.
Palliative Care Network Tour #3 : 18-24 August
This experience was one never to be forgotten. Our transport was a small van with a seating capacity for 10. We numbered nine in all: Dr. Rosalie Shaw, Consultant in Palliative Care Medicine and Executive Director of APHN, Singapore, Dr. Boon Chai Peng, Co-ordinator of the tour and Medical Director of PPCS, Dr. Nu Nu Aye – Volunteer Doctor PPCS, supporting Nurses and Volunteers, a driver and myself.
PPCS East Coast Tour – Grik Hospital
Our tiny dedicated contingent continued to push on down the Coast speaking with and /or presenting to Doctors, Nurses, Radiographers, Physiotherapists, Paramedics and Volunteers. My contribution to the cause: “Care in the Final Days – The Role of Nutrition & Hydration and Facing Death and Bereavement”. These topics brought about much discussion from many of those attending, particularly the controversial subjects of nutrition and hydration. Having a responsive audience certainly makes the presenter feel that the effort has been well worthwhile and that there has been an exchange of knowledge – hopefully, both ways.
EC Tour Kuala Kuantan Hospital
Overall, the number of attendees at these Seminars totalled: 452.
At the completion of the Tour, the nine of us camped for two days in an old boarding school in the Cameron Highlands. The purpose for this foray into the hills was to visit and talk to the Staff of the Cameron Highlands Hospital as well as conduct a Weekend Workshop for PC Workers from the surrounding areas.
Pertubuhun Hospis Klang (PHK)
Klang is the nearest sea-port to Kuala Lumpur and about 90 minutes drive from Hospis Malaysia. The PC Staff of PHK were very enthusiastic to have on-going education for all of their staff and volunteers and consequently invited me to be a facilitator for two of their recent Weekend Workshops. One could only admire yet another PC Team – keen to improve their practice and share their knowledge.
The Rumah Hospice provides both inpatient and home care for their patients. During my visit with Dr. Devaraj and his staff, the subjects: Pain Assessment and Management were presented with discussion of their inpatient cases.
Tsu Chi Hospice was in the process of moving to a new building yet found time to gather together many of their Volunteers to welcome me and discuss patient issues that were of concern to them. Presentations on “Volunteerism in Palliative Care” and “Self-Care” were well received with much discussion on the stressors of being a committed Volunteer. Providing Palliative Care within the community is but one of their activities. Volunteers donate their time and energies to many areas amongst these: funding patients who require regular renal dialysis. Money is obtained by the volunteers by collecting and selling recyclables – cardboard, cans etc.
Sojourn to Sabah on the island of Borneo - ‘The Land below the Wind’
For a brief few weeks, my husband Martyn visited and assisted me in my travels. He has always been a great inspirational partner who has the knack of re-kindling my enthusiasm during my (not-too-many fortunately) weary moments. Having a travelling companion for a short while certainly brightened my journeys. On landing, Jercy Ng, Chairperson of the Palliative Care Association of Kota Kinabalu (PCAKK) welcomed us with just the biggest of smiles at the airport then proceeded to show us the surrounding sights as well as introduce us to the PC Team.
Jercy Ng and Jan in Sabah
In January 1995, a Palliative Care Unit was opened at the Queen Elizabeth Hospital, in Kota Kinabalu under the watchful eye of Dr. Ranjit Mathew Oommen, Consultant Surgeon and Medical Advisor to the Palliative Care Association. Dr. Ranjit and his wife, Dr. Molly Elizabeth Mathew are seasoned PC campaigners and due to their efforts and those of the PCAKK multi-skilled volunteers, much has been accomplished for the patients and their families in Sabah.
The PC Association have been very active in establishing a Home Care Programme as well as a Day Care Centre. Their Services’ premises were two old derelict houses, which have been amazingly renovated by the volunteers themselves at minimal cost.
37th Malaysia-Singapore Congress of Medicine
Prior to this three-day Congress commencing, a one-day Palliative Care Workshop was conducted with over 100 nurses registering to participate. Each of the speakers presented one of eight topics – mine being “Can we talk?” This session encouraged audience participation and evaluation of a Role Play acted out by two members of the Hospis Homecare Team.
HM Nurses & Psychologist
HM Palliative Care Doctors.
Visits to PC patients in several of the General Hospitals in Kuala Lumpur were made generally with a HM Team nurse or doctor. On such occasion highlighted for me the need for empathy and compassion from the nurses. At least those that were attending to this particular patient. Their understanding of the enormity of this patient’s pain and suffering left a great deal to be desired.
On two occasions, presentations were given on Pain: Assessment and Management to nurses and doctors working with Oncology and Palliative Care patients in these Hospitals and amongst those present were staff who had been attending this particular patient. A sincere hope was that they understood just a little if not most of what was being said. Verbal feedback was positive but one wonders just how much would be put into practice.
Phone calls and emails from PC workers around Malaysia were coming and going on a daily basis. Most weekends were spent either assisting with Workshops or preparing for those ahead. Kuala Lumpur has much to offer the tourist as well and several of the HM Volunteers ensured that these were not to be missed.
Simply, there were no hassles. Flying to Malaysia and back was trouble and SARS free. Driving around KL had its moments though - but it does not take too long to adapt to local styles and change from assertive to aggressive behaviour when required to on those roads. Ah, but little old grey-haired drivers are given licence to push in there so this was certainly taken advantage of wherever possible.
This lengthy visit (18 weeks in total) provided the opportunity to
- Work with many palliative care teams within the various communities
- Provide one to one teaching for individual PC nurses
- Advocate for and raise the profile of palliative care in Malaysia
- Facilitate workshops, seminars and teaching sessions for PC staff & volunteers
- Act as mentor for palliative care nurses within KL and other regions
Hospis Malaysia 2004 Plan - Palliative Care Nurse Training Certificate Course
Six Modules over a 12-month period
Invitations for 2004.
- Facilitate one or more Modules of the above PC Nurse Training Course.
- Facilitate Annual Hospis Malaysia Palliative Care Foundation Course
My sincere appreciation is extended to my host, Hospis Malaysia for giving me a home and support whilst there, to IAHPC for their encouragement and financial assistance and to Dr. Rosalie Shaw and Dr. Ednin Hamzah for their guidance and moral support in my endeavours.
Submitted by: Jan Phillips RN Oncology/Palliative Care. Moruya NSW Australia
Date: 13 May – 20 September 2003