Dying with dignity

The Starfish Programme

San Lazaro Hospital is a 600-bed infectious diseases hospital in a poor area of Manila. It deals with people who have diseases such as rabies, measles, tetanus, tuberculosis and AIDS. The hospital is under-funded and struggles to provide care for people who are themselves poor. The life-threatening nature of many of the diseases affecting San Lazaro patients means that there are many deaths in the hospital. In 2000 Dr Pearla Albans, head of the hospital’s HIV/AIDS unit, attended a WHO training programme in Australia. As part of the programme the participants were introduced to palliative care by Larri Hayhurst, a palliative care educator from Sydney. Dr Albans immediately saw the relevance of palliative care for San Lazaro Hospital, and Larri was invited to the Philippines. Her visit resulted in a formal invitation from San Lazaro’s Medical Centre Chief, Dr Benito Arca, to introduce a palliative care education programme in the hospital. Dr Arca had long wanted to improve the care of dying patients at San Lazaro. When asked what his vision was for them he replied: “I want every dying patient in this hospital to die in the arms of a loved one”. His vision encompassed introducing the principles and practice of palliative care to all staff in the hospital, with San Lazaro eventually acting as a training centre for other hospitals. In Larri Hayhurst he found the first member of a small team who would help make his vision a reality. Larri Hayhurst invited Sydney palliative care specialist Dr Sue Marsden to join her in working at San Lazaro. In November 2000, Auckland psychotherapist Liese Groot went to Sydney to conduct seminars for Sacred Heart Hospice. There she met Larri, who invited her to become the third member of the team. Liese is a palliative care educator, who for ten years worked with and for Elisabeth Kubler- Ross, conducting seminars on grief, loss and palliative care in the USA, Europe, Africa, Australia and New Zealand. The scene was set for the beginning of a remarkable programme which was to change the culture of a hospital, and the lives – and deaths – of many people. The Starfish Palliative Care Programme, as it came to be known, aims to educate staff members from different parts of San Lazaro Hospital in palliative care. Four-day workshops in “Basic Palliative Care” are the starting point for staff willing to be involved, together with courses covering symptom control in palliative care, and courses which help staff to improve their communication with dying patients. The high stress situations in which staff worked soon made apparent the need for a Self-Care Course for those who were dealing with many dying patients. For example, on one day when the palliative care course began at 8am, a nurse came to the course from the TB ward where there had been five deaths since her shift began at 7am. The level of “carer pain” and grief overload is high, compounded by the fact that staff can not always provide the medication patients need due to the hospital’s funding difficulties. Early in the programme a Core Group of San Lazaro staff members was established, made up of doctors, nurses, chaplains and a counselor. The group receives intensive teaching when Larri, Liese and Sue visit to conduct workshops, as the Core Group will be the long term resource for their colleagues. The workload of the Core Group is high, as their participation is in addition to their duties in an understaffed hospital. Their dedication, passion and knowledge will ultimately make the palliative care programme sustainable when the Australian and New Zealand input finishes in 2006. As well as conducting workshops, the palliative care team worked with staff in wards to introduce the practicalities of palliative care. Initially Larri had worked with the staff of the HIV/AIDS unit at the hospital, and the plan was for the team to also work in this area, introducing palliative care practices and building up a team of staff who could teach others. However hospital staff were particularly concerned with the plight of the patients in the rabies ward, and the decision was made to begin by introducing palliative care in one of the most difficult clinical areas in the hospital. There are on average two deaths per week in the rabies ward at San Lazaro Hospital. If a person is bitten by an animal with rabies they have a short period of time in which injections of a rabies vaccine will be effective in preventing the development of the disease. There are queues of people at Manila hospitals waiting to receive the vaccine after they have been bitten by one of the many types of animals which carry rabies. These people are the lucky ones – many children and adults do not realize they have been bitten by a rabid animal. Animals are infectious before they exhibit symptoms, so the danger may not be obvious. The symptoms of rabies take two weeks or more to appear, and once they do, death inevitably follows a few days later. Patients suffer a violent death in a state of psychotic terror of air and water, afflicted by painful spasms. A person showing the first signs of rabies is brought to San Lazaro Hospital by several people wearing padded protective clothing. When the palliative care team began work with the staff of the rabies ward, they found that it was standard practice to tie the patients to the bed, with their arms above their heads, because they were violent as well as infectious. There were no sheets on the beds, no blinds on the windows to keep out the heat of the sun, and the patient remained in the street clothes they were wearing when they arrived in the ward. Valium was being used unsuccessfully to control the symptoms, and the dying patient spent most of the time alone. Doctors and nurses were frightened to have physical contact with patients in case they were bitten or spat upon, as staff are not vaccinated against rabies due to lack of funds. There was no furniture provided for family members to enable them to sit with their dying relative. The rabies treatment protocol was set down in a policy written by the Philippines Department of Health. The palliative care team found that changing the protocol was no easy matter. Staff believed it was impossible to control the psychotic symptoms, and little professional nursing care was given to the patients because of the fear of infection. It was also difficult to do much for patients when they were tied to a bed. The team worked with staff to bring about small changes, such as putting sheets on the bed and blinds on the windows. Instead of having both arms tied to the bed above the patient’s head, one arm was tied by the person’s side, which was a little more comfortable. A breakthrough came when the psychiatrist at San Lazaro participated in the basic palliative care course, and became involved in the care of the rabies patients. She assessed them as psychotic and was able to prescribe an anti-psychotic drug. Prompt administration of the anti-psychotic medication is critical in controlling the acute psychosis suffered by rabies patients. If the patient receives the medication on admission they do not become combative, and there is no need for restraints. The effectiveness of the medication was never in doubt, but its availability was initially a serious problem. The hospital pharmacy did not always have it due to funding constraints, and the patient’s relatives generally could not afford to pay for it. The variable availability meant that sometimes the patient did not get the vital first dose soon enough to control the psychotic symptoms. The situation was resolved when the doctor involved in the palliative care of the rabies patients personally purchased five doses, so that the medication could be on hand. Relatives are asked if they can pay, but if they cannot the Philippines Charity Sweepstake Office now provides funding to replace the doses which are used. The staff of the ward were still frightened to approach the patients even when the anti-pyschotic medication made them peaceful, and they did not want the restraints removed. A simple act by Larri helped to allay their fears and to change the practice of tying the person to the bed until they died. One patient who had been restrained for 72 hours had not received any nursing care, and his wife was in great distress about his situation. The medication had been effective in controlling his psychotic symptoms, and he was not aggressive. Larri, together with one of the nurses from the Core Team, sponged him and attended to his needs. This act broke through the fear of the ward nurses, and led to the practice of restraining the patient only until medication has controlled the psychotic symptoms. Now parents can hold their dying children, relatives can sit with and tend to their loved ones, and nursing care can take place. The situation of one particular patient highlighted another issue for the palliative carers. The patient had not been told he was going to be restrained, and was hurt as he fought with the men who tied him to the bed. He did not know that he had rabies, or that he would die in a few days. Before medication was used to control the psychotic symptoms of rabies, staff had found it difficult to communicate with the patients. With the psychotic symptoms controlled, it was possible to talk with the patient and to tell them the truth about their situation. It became apparent that staff had no training in breaking bad news, and so time was allocated in the palliative care courses for dealing with communication issues. It is now accepted that it is better to tell the patient and the relatives the truth, and staff have become experienced in handling the resulting distress. Telling the patient the truth has also opened the way for the spiritual and psycho-social care which is an integral part of holistic palliative care. During one of the palliative care courses participants expressed concern about the needs of relatives who stay in the ward and help to care for their loved ones who are dying of rabies. Relatives are often traumatized people with nowhere private to go during their stay at the hospital. A silid damayan or “room of comfort” was set up for the relatives of rabies patients, and it now provides a private space where relatives can take a break when possible, and staff can talk with distressed relatives. In the clinical area the Core Group and palliative care team are now working with the staff of the TB ward. This is a large ward of 180 beds, often with more patients than beds, which means there are two patients in a bed. Tap water is not always available for periods of the day, and a long hose is used to bring water from another part of the hospital. Some patients stay in the ward for many months; some are discharged home to their families but readmitted when the family does not want to care for them. There are children in the ward who no longer have TB but whose parents have vanished. The TB ward is very isolated from the rest of the hospital and the staff are seriously overloaded. At times there are only two or three nurses on a shift to care for 200 or more patients. Much of the care of the patients, many of whom are terminally ill, is done by the Bantay, “the watchers”, who are mostly friends and relatives of the patients. The Bantay are an integral part of the operation of the ward, which simply could not function without them. The palliative care team soon recognized that the Bantay have their own needs, and Liese was instrumental in designing the Bantay Support Programme. This programme teaches the Bantay basic physical care and infection control, and gives them time and space to express their emotional concerns and pain. They are taught how to best respond to the difficult issues they are confronted with, such as talking about death and dying with their loved ones.