The SAMOT supportive care programme in Southern Italy - Springer Link

Support Care Cancer (1997) 5:5-8 © Springer-Verlag 1997

Sebastiano Mercadante Giorgio Trizzino

S. Mercadante, M.D. ([~) G. Trizzino, M.D. Pain Relief and Palliative Care Unit, SAMOT, Via Libertä, 191, 1-90143 Palermo, Italy Tel.: (39) 91-30 28 76 Fax: (39) 91-30 30 98 S. Mercadante, M.D. - G. Trizzino, M.D. Department of Anesthesia and Intensive Care, Buccheri La Ferla Hospital, Palermo, Italy

The SAMOT supportive care programme in Southern Italy

Abstract Since 1988 a palliative care programme has been in development in Palermo, a large town in Southern Italy. The main objective is to provide home palliative care in conditions in which no other fäcility exists to meet the needs and reduce the distress of terminal cancer patients. This programme has been implemented and extended to other cities and villages in Sicily. A team composed of physicians, nurses, social workers and volunteers looks after patients at home.

Introduction In 1988 a programme for development of a h o m e supportive care service in Palermo, the second largest town in Southern Italy, began. The idea of organizing a service for palliative treatment in Palermo emerged from discussions among a small group of professionals involved in caring for cancer patients who, like other terminally ill patients, had evidently been discharged from hospital and abandoned with no chance of any further professional care [2]. Sicily, like Italy, does not enjoy a high level of health and social services. No public structure or medical insurance exists to meet the needs of patients who have been discharged from hospital with advanced cancer. Home care is expanding greatly, because of the savings it offers by avoiding unnecessary hospitalization, and also because patients benefit from being in their own home environments surrounded by the affection of their families. Economic advantages are combined with psychological and physical benefits for the patients. As no relevant government body existed, a private association (SAMOT) was funded with the financial assistance of the city administration of Palermo

This model has been recognized as highly effective. The activities, the problems related to the development of such programme, including those concerned with the sociocultural environment and the family doctor, the needs of specific hospital departments, and the scientific and educational activities, are pointed out. Key words Advanced cancer • Palliative care programme • Home c a r e . Opioids

and its mayor, Leoluca Orlando and, more recently, of the regional administration of Sicily. The SAMOT team's field of activity has grown since 1988, and it now cares for nearly 500 patients a year, with about 75 patients on line. The main objectives of the programme are to offer a high level of symptom control and pain relief and to improve the quality of life in terminal cancer patients, and also to give psychological support to patients and their families during the process of dying. Table 1 shows how the team's activities are growing. In 1995 other centres in some cities and villages of Sicily were started, including Ragusa in the south-eastern area and Caltanissetta in central Sicily. The duration of home assistance generally ranges between 40 and 60 days. Very advanced aases are preferentially selected. In a previous survey patient characteristics were analysed over a 4-year period [4]. Lung and urogenital tumours were the most frequent diagnoses. The incidence of pain in these population was about 70%. The abdomen and limbs were the most frequent sites of pain, and there were mostly two (39%) or three pain sites (37%). Tumour growth alone or asso-

Table 1 Data on activity

Patients Days of assistance Mean duration Home visits

1988-1989

1990

1991

1992

1993

1994

1995

142 7156 50.4 3577

220 13112 59.6 5244

250 12498 50 8332

298 14029 47.08 9265

315 14975 47.54 7986

351 18743 53.4 9996

490 25382 51.8 11844

ciated with other causes, including cäncer therapy and non-cancer-related syndromes, was reported as predominantly involved in pain presentation (73%). Somatic and visceral pain were reported with equal frequency (66%), and neuropathic pain rather less orten (35%). The analgesic treatment before referral included anti-inflammatory drugs in most cases (75%), while patients were rarely treated with opioids, and then generally "as required". The treatment before referral had been ineffective in 75% of cases. After admission the duration of the first step of the analgesic ladder ranged from 19 to 42 days. A total of 85% of pätients with pain received opioids before death. Of these, 57% had moderate pain and received so-called weak opioids, such as dextropropoxyphene and codeine. The mean maximum opioid dose in morphine milligrams ranged between 60-70 mg. Pain control was possible in most cases. Alternative techniques to oral and parenteral administration of opioid drugs were rarely used. These techniques included nerve blocks, peridural opioids plus bupivacaine, and alcoholization and were applied in less than 2% of cases. Opioid consumption has been increasing in recent years, although it remains lower than in other regions. Morphine consumption in Sicily has risen from 4254 kg a year in 1993 to 5171 kg in 1995, which means an increase of 21% in 2 years. In 1993 opioid consumption in Sicily accounted for 4.6% of the total Italian consumption and in 1995 this percentage had increased to 5.3% (15% increment in the Sicily-to-Italy consumption ratio).

The model Advanced or terminal cancer patients are cared for directly by a home supportive care team, including doctors, nurses, social workers, volunteers and physiotherapists. After a meeting with the relatives and examination of the clinical dossier to document the advanced stage of the illness, the patient is assigned to a physician and a nurse. We prefer to accept patients only after anticancer procedures have been exhausted and the illness has become very advanced. Patients who are still ambulatory are referred to the Pain Clinic of Buccheri La

Ferla Fatebenefratelli Hospital until they become unable to go to the hospital. Patients have to remain basically at home, participate in their treatment with the help of their family, and be monitored regularly for symptoms. Depending on the clinical situation two or three visits a week are planned. Data are reported on a standard sheet with sections for previous treatments, current problems, characteristics of pain and pain sites (a body map is included). Symptoms, graded in scales, drugs and dosages are also entered. A final comment and a summary of problems encountered and the procedures used conclude the data sheet. Continuous telephone contact is maintained between the patient's home, the home care team and the secretarial staff. Consultation with the supervisor, at home as weil as by telephone, is also offered in complicated cases. Patients not resident in the Palermo area are offered telephone consultation with family members and with the general practitioner. Psychosocial support from social workers and volunteers is also considered. During the team meeting on Wednesdays, the most relevant cases are discussed with the medical director. There are also meetings with an expert in communication, a psychiatrist, to discuss the problems relative to the emotional and social problems encountered at patients' homes, as well as the relationships within the group.

Informatics Collected patient data in standard free text form are difficult to store and review. Electronic data processing can simplify working procedures, filing, analytical and research objects, statistical processing and other functions [1]. We have recently updated out computer system to improve its effectiveness. It is a stand-alone, standard Windows application. This application has developed with dBase and incorporates significant improvements relating to the interface, which has been radically changed from the old DOS version with a view to simplifying the data in-putting and retrieval; it also, however, offers many new features, such as facilities for preparing graphics and trends. It also offers options for administrative purposes (salaries, days of assistance, and so on).

The problem of the general practitioner The family doctor has a fundamental role in home care. The knowledge of the patient's clinical history and the relationship of confidence and trust established with patients and relatives underline the role of the family doctor in the management of the care of dying patients at home. Modern attitudes and lack of time leave little space for palliative care. In spite of refresher, promotional and briefing courses aimed at improving the collaboration of family physicians with a palliative care team, as well as specific efforts to maintain active collaboration with them, they continue to be absent from the bedsides of terminally ill patients. In a previous survey it was found that only 20% of family doctors were visiting the homes of terminally ill patients at least once a week and only 19% had a prescription book for narcotics [3]. These results are disappointing and are symptomatic of a social welfare system that is unlikely to improve as a result of isolated local initiatives. A national and international task force is necessary to promote the official recognition of palliative care within the health ministries of various countries so that this discipline becomes an integral and imperative part of medical care and education.

Psychosocial aspects Cultural, economic and religious characteristics of the population assisted are important factors in the planning of home palliative care. A questionnaire and an interview guide have been used to evaluate the psychosocial needs of the patient's family [5]. The social characteristics of a Mediterranean population are highly specific. A m o n g the patients who received care, only 2% lived alone and 67% had at least two adult relatives living in the household who were willing to care for them; this is because large families are still prevalent, many patients are elderly but still live with relatives, there is a close social network of neighbours among the p o o r e r classes of the population, and marital separation and divorce are relatively rare. The family initially displays either diffidence or amazement towards a team that takes care of a dying patient free of charge. This changes to gratitude and trust during home assistance and after the death of their family member. Only in 24% of cases is home assistance discontinued. The success or failure of the relationship with the family depends on many things: preexisting conflicts within the family, request for active treatment, and cultural and economic background. Almost total absence of any religion other than R o m a n Catholicism was reported. Ten per cent of the patients had children under the age of 18. Most patients were elderly, retired or housewives (69%), married (65%) or widows or widowers (23%).

Economic class was predominantly middle or low and depended on the level of pension, which offered a minimum means of subsistence. People in prosperous economic conditions usually do not request home palliative care, as they can pay for private clinics or private help at home. Most patients were referred to S A M O T upon being told at the time of discharge from hospital that "nothing could be done". Families preferred their relatives to be cared for at home, although they would probably have chosen hospital assistance if it had been more adequate, as they felt that hospital care offered a greater likelihood of recovery. Unnecessary interventions are often requested.

The needs O p e n to discussion is the greater or lesser effectiveness of treatment in the hospice setting. The cost-effective option of home care is not intended to exclude the option of a hospice, but rather to be one of a full complement of services that should all be available within the community. The hospice is considered to be the best environment for achieving the goal of all palliative treatment, effective and lasting control of symptoms and a peaceful death surrounded by the affection of family members. In some cases aggressive treatment of a difficult clinical problem is possible only in a palliative care unit. Admission to general wards in hospital fails to achieve the goal, because the lack of knowledge of the principles of supportive care for patients with advanced cancer in such departments means they are inadequate to resolve the patients' clinical problems. Intensive measures of resuscitation are strongly discouraged by the home care team. In Sicily there are no palliative care beds in hospital, and no hospital-based services. A programme aimed at the opening of a pain relief and supportive care unit is being developed in a church hospital with all the facilities for care and could be concluded within the next few years.

Education and training T h e r e is no graduate or postgraduate education in palliative care except for courses organized by the Italian Society of Palliative Care in Northern Italy, which are not recognized by the Ministry of Health. People invest considerable effort in training in palliative care. A number of interested persons and groups coming from Sicily, including physicians, nurses, home assistants, and social workers, take part in the activities of the SAM O T programme. Specific training is offered. Trainees attend the Wednesday group meetings for 4 months, and another 4 months are dedicated to the practical

training in the patients' homes, which they visit together with the professionals. A refresher course with invited speakers is organized every year for palliative care professionals and for people desirous of initiating this activity. Continuous availability for meetings organized in hospitals or other centres is offered. Scientific events and cultural meetings, including the national congress of the Italian Society of Palliative Care and the consensus meeting of the European Association of Palliative Care, have been organized to promote interest in this field and to change the attitudes of physicians and nurses to cancer pain and palliative care. Research on pain and symptom control is strongly encouraged.

Future development and legislation Thanks to repeated sensitization campaigns, a bill prescribing the recognition of supportive care services has recently been passed for Sicily, which is a region with an autonomous administration. It provides for the opening of palliative care units (1 bed for every 20 thousand inhabitants) and home palliative care services in all the areas of the region, although its enforcement is unlikely to be very quickly achieved.

References 1. Mercadante S, Lanza V (1994) Informatics in palliative care. J Pain Symptom Manage 9:28-33 2. Mercadante S, Mangione S (1990) Home palliative care: the challenge in Palermo. J Palliat Care 6:56-58

3. Mercadante S, Maddaloni S, Roccella S, Salvaggio L, Simonetti MT (1991) Family doctor and palliative care team: 1988 versus 1990. J Palliat Care 7:38-39 4. Mercadante S, Genovese G, Kargar JA, Maddaloni S, Roccella S, Salvaggio L, Simonetti MT (1992) Home palliative care: results in 1991 versus 1988. J Pain Symptom Manage 7:414418

5. Mercadante S, Meli Di Leo E, Carollo CM, Sunseri G (1993) Social characteristics of home care patients in Southern Italy. J Palliat Care 9:38-40