In 2001 Dr Susan Marsden Traveled to:
San Lazaro Infectious Diseases Hospital
Manila, Philippines

Dr Susan Marsden Sydney, Australia

Highlights

Patients with rabies die physically restrained, agitated, aggressive and paranoid with classic hydro- and aero-phobia. Two patients die like this, on average, every week.

The aim is to develop a study whose results will not only be useful at San Lazaro but also in other countries where rabies still leads to horrible deaths.

Dr Susan Marsden

Full Report

SHARING PALLIATIVE CARE EXPERIENCE IN MANILA

Report on IAHPC Travelling Fellowship October 2001

Sue Marsden

I am grateful to the IAHPC for providing me with a Travelling Fellowship, which helped me to return to Manila in October. This was my third visit to Manila as part of a team that is helping to establish a Palliative Care Programme at San Lazaro Hospital, the 900 bed Government Infectious Diseases Hospital. For me the most unlikely place for me to experience and teach an evolving Palliative Care Programme! This time last year nothing was further from my mind. This time this year it is etched into my heart and looks like occupying a good chunk of my professional and personal energy over the next three years. I welcome the opportunity to tell you some of the following:

The Evolution of the programme and how it has, so graphically been a MUTUAL learning experience.

Rabies. The application of Palliative Care Principles in this terrible disease and plans to use this as a model for demonstrating and introducing Palliative Care Principles at San Lazaro Hospital and develop a study whose results will not only be useful at San Lazaro but also in other countries where rabies still leads to horrible deaths.

EVOLUTION

Some time ago, Larri Hayhurst, Palliative Care educator from Sydney had taught at the University of New South Wales WHO programme. One of the participants, Dr Perla Albans, then in charge of HIV/AIDS services at San Lazaro asked Larri to come to Manila. Catch!! No funding!.

Larri, undeterred and with huge generosity responded using Airpoints for fares, arrived in Manila. After teaching some short courses for various HIV/AIDS organizations and San Lazaro she received an enthusiastic invitation to establish a P. C. programme for them. The Sisters of Charity in Sydney were persuaded to help with funding making Larri’s return in January possible. San Lazaro’s Chief Medical Officer made sure that staff were freed up to attend. The programme was born!

The programme from the beginning has been based on sound adult education principles. The goal is one of empowering and encouraging the San Lazaro staff to take over, teach and implement P.C. themselves.

After the January visit Larri asked me to help with the Palliative Medicine component. Larri's description of the need, the challenge, the enthusiasm and thirst for knowledge of the dedicated, weary, under-funded [what an understatement!] group of warm- hearted professionals that made up San Lazaro was indeed infectious, and so in March I had the privilege of joining Larri to teach the P.M. component and co-facilitate a self-care workshop for staff. I also had the opportunity to work with some of the HIV/AIDS patients and staff using impromptu drawings and other self-awareness techniques.

To say that it has been a mutual learning experience is a gross understatement. I think my concept of P.C. in an I.D. Hospital in a country such as the Philippines was about serving HIV/AIDS patients. This, however, although important, is just one part of the P.C. challenge facing San Lazaro. It quickly became apparent that there are HUGE issues around patients dying with other I.Ds in their advanced and incurable stages such as Rabies, Tetanus and Meningitis to name but a few. Staff vocalised their distress especially about the plight of rabies patients of whom there are on average, TWO HORRIFIC deaths a week. [AIDs deaths, they told us, are about one a month in the hospital]. But more about Rabies later.

I have learnt and experienced much in my visits. The lack of resources and medications available, the poverty, the overwhelming volume of need that these health care professionals face is humbling. What can be achieved with few resources, determination, and love is inspiring.

After our March visit the team grew and in July we were joined by Liese Groot-Alberts, psychotherapist and Hospice/Palliative Care lecturer and clinical supervisor from New Zealand. A four day residential self awareness/self-care workshop was added to the programme at the request of the staff and again supported by the Chief Medical Officer. The components taught on previous visits were repeated.

In October, Larri, Liese and I returned. An important new component, The Principles of Adult Education was added. Liese and I also facilitated a self-awareness/stress management residential course to senior hospital management. A challenge indeed as the staff’s attendance at the WEEKEND residential course was compulsory!

A planning meeting for the programme as a whole was held with the team and Chief Medical Officer, Dr Arca, and we were also asked to take part in a meeting called by Dr Arca to liaise with other groups in Manila with an interest in Palliative Care.

I also met with staff involved with Rabies patients to discuss the development of a research study on dying Rabies patients.

The programme thus far has been:

SEPTEMBER 2000: 

A series of short introductory workshops on P.C. principles including communication and self-awareness/self-care.

JANUARY 2001: 

1: Fundamentals of P.C.: 4 days.

2: Communication skills: 2 days

3: Self-care: 1 day

MARCH 2001: 

1: Fundamentals of P.C.: 4 days

2: Communication Skills

3: Palliative Medicine: 2 days

4: Stress management/self-care for senior management staff: 2 day residential

JULY 2001:  

1: Fundamentals of P.C

2: Palliative Medicine

3: Self-awareness [titled by S L ‘In Depth Grief Workshop’]: 4 day residential

4:Communication Skills

5: Self-care

OCTOBER 2001: 

1: Palliative Medicine

2: Self Care

3: Communication Skills

4: Self-Awareness/Stress Management for management

5: Planning meetings for 

a] the programme at San Lazaro

b] liaison with other organizations and

c] the Rabies studies

Each 4 day ‘Fundamentals’ component forms the basis of the programme and is a pre-requisite for attending the other components. The participants comprise of nurses, doctors and social workers of varying seniority and pastoral care workers from various Christian communities who work voluntarily at S L. To my surprise there were 10-15 doctors, many very senior, attending the programme.

Early in the programme Larri identified key people as facilitators who would reinforce the programme, monitor progress and eventually take over it’s teaching.

The overall concept is to initiate the programme, train the staff to create and implement their own appropriate flavour of P.C. Our role is as catalysts.

Right through all components, participants have been asked to contribute to the curriculum development and evaluate their experience as honestly as possible. It has been interesting how much emphasis they have placed on the need to learn more about communication skills.

RABIES STUDY:

In parallel with the further development of the seminar programme, a study on Rabies patients will be undertaken which as well as providing valuable data about this desperate group of patients will act as a model for implementation of Palliative Care Principles in the hospital.

Early in the programme Rabies was stated as a huge issue for the staff. Many dogs are rabid and for many reasons including cultural, economic and emotional, when people are bitten they may not present for vaccination. A large national education programme has been undertaken to improve this. However once symptoms of clinical rabies are established [often weeks to months or even years after a bite] mortality is 100%.

Patients die physically restrained, agitated, aggressive and paranoid with classic hydra- and aero-phobia. TWO patients die like this, on average, every week. How might we improve the palliation of these poor souls? I was told sedation did not work. Diazepam and Diphenhydramine are used. The answer seemed simple. Use different sedation. A BIG learning curve for me!! Nothing is that simple in such an environment. I needed a crash course in the politics and culture that was at work.

The issues to be overcome include:

1] The pharmacological protocol they were following is a Dept of Health regime and there is a fear of deviating from this as well as the fear of side effects from other drugs that might be considered. There is also a VERY strong belief that NOTHING will be effective.

2] The cost and the lack of availability of other medications.

3] The fear of the staff caring for these patients that they may become infected from contact with infected body fluids. The staff is not routinely vaccinated. The doctor in charge of the CNS ward [a ward that cares for the most distressing group of patients—rabies, tetanus, meningitis] has been in that position for 15 years and is exhausted in his efforts to help these patients. He has been trying to have staff vaccinated but the cost is said to be prohibitive.

4] The fear engendered for the families and how to deal with this.

5] The sheer over burdening of the staff and the system that can create a sense of futility to try and change anything.

During the course of small group sessions following the Palliative Medicine seminar one group enthusiastically developed an action plan to start and address some of these issues. They started with how they could better support the patients’ families. Even given the physical environment they work in they were able to formulate some practical ways that would ease the families’ distress. They also identified the need for educating ALL staff in PC principles including the cleaners and guards.

A young staff specialist doctor from the programme who is assigned in the neurological ward is working to effect attitude changes within the ward. She has suggested that changing rosters and assigning staff for longer periods to this ward may make vaccination of a core group of staff to work there more possible financially. She has volunteered that she is very willing to work in the area for longer than staff are usually obliged. Thus working slowly with the staff we hope to improve a lot of these patients and their families.

Also together we are now looking at some studies that will allow the introduction of new management guidelines. A key instigator of this is a young psychiatrist who has participated in the programme and is one of the local facilitators. A pilot study is planned for her, to document the exact incidence and nature of the psychotic, paranoid symptoms of dying rabid patients. With this evidence base recorded, drug changes recommended using anti-psychotic medications might be more readily accepted. Such drugs, we believe, will be more effective.

It is with this study that Eduardo Breura has very generously offered his advise and help. The experience that San Lazaro has with Rabies is huge and as Eduardo Breura has said, in encouraging us to make this study happen, their experience needs to be shared with the world. I am personally very grateful for his advice and encouragement and know this is shared by San Lazaro staff. The staff has also told me of two near-term pregnant Rabies patients they have cared for in the last year. One baby has survived and is now over a year old. I am encouraging them to publish this experience.

THE FUTURE:

The programme at San Lazaro owes its success to the enthusiasm and determination of the wonderful staff. The Chief Medical Officer, Dr B Arca, has taken on the concepts of Palliative care and seen it’s potential for his hospital with amazing vision and commitment. It is due to him that so many of the staff have already been exposed to PC and are putting it into grassroots practice with enthusiasm.

His vision is that:

1]: ALL staff will understand and practice PC principles.

2]:Once the programme is well established at SL, the hospital could act as a training centre for others.

3]: Eventually SL could have an impact legislatively.

In Dr Arca’s words: ‘I want every child to die in the arms of a loved one’.

Thus it is planned to continue to expand the programme and develop this vision over 3 years. Already 2 more overseas staff are planned to join the consultative team. One is a nurse/psychotherapist from Australia and the other an Infectious Diseases specialist and Hospice Director from US. Both are leaders in their fields.

CONCLUSION:

And so the team is preparing for a 3 year commitment. We hope to have the Rabies study running in the New Year. Funding remains, of course, a major issue! The Sisters of Charity in Sydney have funded Larri’s participation, the New Zealand Government has funded Liese’s participation and I remain grateful for the IAHPC’s generous help. We sincerely hope that future funding for the planned Programme and Rabies study will be found.

Submitted by: Dr Susan Marsden