2001
Clinica Familia for Palliative Care
By, Dr Flavio Nervi, Clinica Familia for Palliative Care, Santiago, Chile.
WHO ARE WE?
Under the leadership of Father Baldo Santi, in 1988 a palliative care program was developed to provide care to abandoned patients with advanced AIDS. In 1995, emerged the Foundation Pro Dignitate Hominis, an independent non-for-profit foundation, whose goal was to develop a full comprehensive Palliative Care Program for the poorest and abandoned incurable patients in need of care. The Foundation Pro Dignitate Hominis, a non-for-profit organization, built Clinica Familia with the help of private donations in 1997. Its goal is to help the poorest inhabitants of a region, country, or Continent in their health needs related to chronic incurable ailments. This last aspect has been the main objective of the Foundation, which is composed of a well-trained multidisciplinary group of unpaid voluntaries in several fields. The goal of the multidisciplinary group is to provide care to cover the needs of uninsured patients with chronic incurable illnesses, particularly cancer and AIDS. A second fundamental objective is to train voluntary personal in the areas of medicine, psychology, nursing, social worker, physiotherapy and pastoral care. Our policy is to work with public (government), or private organizations that wish to do so, regardless of political parties, race, or religion.
We are fully convinced that humane and compassionate care can reach the highest quality when these spiritual attitudes are present in qualified personnel, formed in the context of holistic care with the highest scientific, humanistic and technical standards possible. This is the first comprehensive multidisciplinary palliative care program that includes a clinical facility specifically built in Chile for Palliative Care, oriented to give humane care to patients with cancer and AIDS that is not adequately covered by the State Health Care System. The foundation's primary objective is to unconditionally help the poorest of the poor. This is especially important nowadays, when Chile is going through an epidemiological transition, which started in the seventies. Although the morbidity and mortality profile is identical to that reported from developed countries, health care of chronic diseases has a major impact in health economics among Chileans that have a gross mean annual income of approximately US$ 5,000. Therefore, the public health system has been progressively overwhelmed, leaving a high proportion of poor citizens without humane care while suffering disseminated cancer, chronic pain and AIDS. This is another important challenge that we wanted to confront with our goal of multiplying the benefits for incurable patients through the creation and application of appropriate care models tailored to fit the particular characteristics of the population. Education and training of volunteers remain one of the principal functions of the Foundation.
Clinica Familia for Palliative Care is the first hospice-hospital built in Chile. It is a new 40-bed well-equipped facility in the middle of a 5,000-m² garden located in the Municipality La Florida, South Santiago. It includes an outpatient clinic with 4 boxes, a chapel, a mortuary room, a house for the nuns of Santa Ana and a very well furnished pharmacy. The Clinica is run by a nest of Voluntaries that have been taking care of incurable patients with AIDS and their families since 1989 in the outpatient setting.
CLINICAL CARE AND SOME INDICATORS.
All patients are incorporated to our Palliative Care Program after rapid and thoughtful examination of the clinical case by the team: physician - nurse - social worker psychologist. The community, or hospital physicians usually refer the patients with a summary of the case. Each patient has a complete Clinical History and evolution sheets, including medical, social, physiotherapy, nutritional and spiritual follows up. Since March 1999, we have incorporated a number of adapted standardized tests to our environment. Different measurement scales of symptoms and disability indexes have been incorporated, including the Karnosky Performance Index (KPI), the Zubrod Index and CAGE, since abnormal alcohol consumption is highly prevalent in Chile.
During 2000, we received 142 in-patients, of whom 108 died in the Clinica. The mean time of permanence in the Clinica was 60 days. Our 80 ambulatory voluntaries took care of approximately 400 outpatients who died in their home with their families. Caring included medical coverage, psychological, pastoral and spiritual preparation of both, the patient and the family prior to, and particularly during the mourning period. Voluntaries were appropriately trained with monthly group interview and psychotherapy to detect personal problems and improve attachment to the mission The Clínica is run by 4 paid-employees and 40 permanent voluntaries including 2 physicians, 6 nurses, 4 psychologists, 20 assistant nurses and 8 administrative. There are also 4 nuns of Santa Ana and 1 chaplain.
QUALITY CONTROL MECHANISMS
All information is now being incorporated into a computerized database for research. At the present time, we are performing the following intervention protocols: a)The role of Voluntary intervention on the clinical outcome and quality of life of the patients and their families, prior to dead and during the mourning period. b) Improving the quality of multidisciplinary palliative care provided by primary care health personnel in the commune of La Florida (~ 450,000 inhabitants) This is accomplished through direct teaching and formation activities developed by qualified personnel of Clínica La Familia and the School of Nursing of the Faculty of Medicine of the Pontificia Universidad Católica de Chile (PUC).
Major symptoms including pain - dyspnea - nausea - anorexia - dysphagia - asthenia - constipation - anxiety - delirium and depression, are assessed when pertinent with standardized questionnaires which are applied by trained personnel in both, the Clinica and ambulatory settings, for appropriate follow up. Each patient is daily evaluated while in the Clinica. Ambulatory patients are evaluated weekly by trained Voluntaries (each Voluntary has 3 to 10 patients in charge). Ambulatory patients have also home visits by the nurse or physician, when appropriate. All interventions are focused to both the patient and the family. Humane care is essentially accomplished through emphatic care and appropriate symptom control. An essential aspect of the process is the psychological and spiritual caring of our personnel. The Voluntaries have monthly interviews with a psychologist and the personnel working in the Clinica have weekly sessions of group psychotherapy. During the disease process and after one year of dead, the Clinica has been recording the degree of satisfaction the patient and the family have obtained. The results have been more than regarding. Appropriate statistics are in the process of elaboration with the help of the Department of Biostatistics of the Faculty of Medicine of PUC.
COMMUNITY OUTREACH
Our program seeks to satisfy the needs of the population it serves in: 1. Education in several areas, including practical assistant nursery for terminal care, nurse internship, and conferences for medical students from the first 3 years (PUC) who are following obligatory courses in humanization of medicine and practical lessons on empathic relationship. In addition we have weekly meetings with teenagers who came from secondary schools to receive orientation and teaching normal human sexuality and prevention of sexually - transmitted diseases. 2. The Clinica has facilities to received study visitors from people coming from all of the Country and from abroad, including Uruguay, Brazil, Argentina, USA, Spain and Italy. A total of 169 students from different Chilean and Foreign Institutes and Universities have visited so far la Clinica (ENAC, INACAP, Pontificia Universidad Católica de Chile, Universidad de Chile, Universidad de Concepción, Universidad de los Andes from Chile. University of Fulda, Germany, Tuffs University and Mayo Clinic from USA) A number of post degree students have developed part of their thesis in psychology and humanistic disciplines at Clinica Familia. 3. All the personnel of the ambulatory facilities of the La Florida (see above) are in an on-going training program oriented to improve the quality of care provided to cancer patients using the tools applied in our Palliative Care Program. It represents an important political commitment and social impact of our Palliative Care Program on one of the more populated municipalities of Santiago.
LONG TERM OBJECTIVES AND VISION.
Our major vision and strongest commitment in Clinica Familia and its Palliative Care Program is in the education and formation of health-related professionals at the very best international standards. This includes physicians, nurses, psychologists, agents of pastoral care, assistant nurses, physiotherapists, social workers and voluntaries.. We will develop and apply appropriate teaching programs of Palliative Medicine and Care for Medical and Nurse Schools beginning at PUC.
We will develop clinical research oriented to measure "disease impact in society" and to evaluate Quality of Life employing appropriate instruments. We will be lobbying to introduce Palliative Medicine as a Specialty in Chile. We are looking for training abroad a number of internists and nurses to achieve a critical mass first in the University setting. Research and postgraduate training capacity are most important for achieving the principal goals of a) Permanence in Time; b) Social sensibilization and c) Extension to the rest of Latin America and elsewhere, where appropriate.
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Contact Information:
Fundación Pro Dignitate Hominis
President, Father Baldo Santi o.m.d.
Vicepresident and Medical Director, Flavio Nervi, M.D. Email: fnervi@med.puc.cl
Executive Director, Margarita Reyes, MPH.
Fono/Fax: 56-2-2881506 - 2957031
Email: cfamilia@123clik.cl
