Italians are much more familiar with palliative care than ever before, eight out of ten citizens know that it is a right and that it should be provided free of charge, many actively ask for it to be obtained but 57% cannot say whether it is active in their territory. Family doctors and clinicians from various specialties say they are mostly informed, but they mainly offer them to cancer patients. As for paediatricians, however, as many as one in three say they do not feel competent in the matter, as do 20% of doctors.
These are some of the data that emerge from the Ispsos investigation “Palliative care. Knowledge and experiences of citizens and clinicians” conducted for Vidas, a voluntary organization dedicated to free assistance for incurable patients and their families, on the occasion of palliative care day which will be celebrated on 11 November. The research, in collaboration with the Palliative Care Federation and thanks to the contribution of the Giulio and Giovanna Sacchetti Foundation, involved 1,501 adults and 920 doctors, including 400 general practitioners, 200 free-choice paediatricians and 320 hospital specialist doctors.
Italians are increasingly informed
Much has changed in twenty years and among citizens there is a growth in knowledge of what palliative care is, as can be seen from a comparison with two surveys carried out in 2008 and 2000.
Today, two out of three Italians know from direct or reported experience what it means to assist a person suffering from an incurable disease, explains Chiara Ferrari, Lead Public Affairs Ipsos. They know that palliative care leads to a improvement of the quality of life of the incurable patient (86%), with the family taking charge (80%), as well as that the service is included in the Lea (81%). For six out of ten interviewees, home, hospital and hospice are places equally dedicated to the provision of palliative care. The hospice, in particular, has more than doubled its notoriety in the space of 15 years, especially among people residing in the North West regions. As for the timing, 57% imagine an activation in the final phase of the disease, close to death, while the remaining 43% are convinced that support can also be offered in less advanced stages of the disease. In a scenario of possible future need, it emerges clearly the home as the primary place of desired care setting (50% or more of the choices), while the hospital is preferred by only one in ten people. The main source of information is the doctor. The majority of citizens (41%) attribute palliative care to pain control e 91% strongly or somewhat agree to the use of opiate substances (morphine and derivatives) in the terminal or advanced and incurable phase of the disease, precisely for the purpose of alleviate physical suffering.
The difficulties of doctors
More than 80% of the doctors interviewed are aware of the fact that palliative care is a right guaranteed by law, but the remaining 15-20% of ignorance is worrying. In addition to this difficulty, there is the relative one the inability to address challenging issues with the patient, such as poor prognosis and the end of life: this, emerges from the survey, constitutes an obstacle to the provision of palliative care. The vast majority of doctors interviewed proposed palliative care for patients with oncological diseases; secondarily in cases of neurological diseases and chronically ill patients (46%), especially among hospital workers. They don’t have too much trust in their patients’ knowledge, but they are then proven wrong by the answers provided by the citizens themselves and by the data relating to the active request for palliative support. To summarize, the main barriers to palliative care that emerge from the survey are «the lack of information from doctors and their inability to give the news in the right way, because activating and proposing them means putting the poor prognosis on the table» concludes Chiara Ferrari «Shared care planning would promote the therapeutic alliance, protect the patient’s wishes and encourage family involvement».
Inform and involve citizens
The first university chair of palliative care was created in 2021 at the State University of Milan. Palliative care is a medical topic that also intersects psychological, sociological and cultural aspects and affects the human being in his entirety. The training and involvement of citizens, to allow them to choose freely, has always been, as he said the president of Vidas Ferruccio De Bortoli, «the objective of the civic education battle on the end of life of Vidas». The association assists over 2200 people a year, both adults (with 20 beds and 220 patients currently cared for at home) and children (hosted in the 6 apartments of Casa Sollievo Bimbi and 65 cared for at home). «As an integral part of its mission Vidas takes care of incurable patients also through constant awareness-raising works on the great issues of living and dying, training and information on regulatory and scientific topics” said Antonio Benedetti, general director of Vidas«and began to promote training and information in a structured way in 1997 by establishing the Vidas Study and Training Centre, with refresher courses for all the figures of the multi-professional team, as well as for journalists».
It’s not an impossible mission
“This knowledge of the citizen means that he makes precise requests: assistance, continuity of care, skills and support for the family” he said Gino Gobber, palliative care specialist and president of the Italian Society of Palliative Care Sicp. «The creation of palliative care networks, territorial articulation and making the home the first place of care are cornerstones. The brake at the origin of the lack of implementation lies in the regions and in the healthcare companies.” The Palliped study on the services activated and functioning in pediatric palliative care shows that only 18% of children who would be entitled to it access it and that five Regions are still without a network. «The ridge between challenging objective and impossible mission is narrow, but if it is considered an impossible mission then it is useless to do anything. Instead, we must make the excellences that exist evident, and implement what is required by the regulations and the Pnrr”.
Institutional information is missing
“In the absence of institutional information campaigns, despite the provisions of the law in terms of promoting information moments for citizens, we can only attribute the greatest information to citizens to the work of the third sector” he commented Tania Piccione of the Fcp Palliative Care Federation, which brings together 22 non-profit organisations. «Although, in the absence of strong institutional action, knowledge is not always in-depth. Another 25% declare they have only a vague idea of what palliative care is; 18% think about natural remedies or alternative medicine. Residential structures are little known. In the end, considering these treatments as a step close to death has negative consequences on the activation times and therefore on the enforceability of a right».
An obstacle to offering palliative care is still having to talk about poor prognosis and death. Doctors must know how to sit on the hot seat
Giada Lonati, palliative care specialist and socio-health director of Vidas
The (poor) communication skills
Over 60% of clinicians are inclined to offer palliative care when treatments no longer affect the course of the disease, even before reaching the terminal phase. As mentioned, the survey shows that the main obstacle perceived by doctors in relation to the prescription of palliative care is the having to deal with the big elephant in the room: poor prognosis and death. «As palliative care specialists, we know how to work on technical skills, to respond to patients’ fears regarding pain and loss of dignity, but the research also shows a difficulty for doctors in experiencing that relational dimension that must be part of their skills. To put it in our own words, we must knowing how to stay in the hot seat and address difficult issues together with the patient. Shared care planning helps everyone, even specialists” says Giada Lonati, palliative care doctor and socio-health director of Vidas.
If death is a taboo or a failure, you don’t think about it
Augusto Caraceni echoes her, director of the complex palliative care, pain therapy and rehabilitation structure of the National Cancer Institute of Milan: «The real Copernican revolution was the inclusion of palliative care in the university training of clinicians, only in this way can they integrate palliative care into your medical culture». In fact, there are still too many who consider palliative care to be the last resort, explains Caraceni: «Scientific evidence confirms the need for integrated palliative care still in the treatment phase to control the disease». But there is also one cultural question, in which death is a taboo, to which must be added the fact that «death is considered a medical failure. Therefore, we prefer not to think about it in time, to the detriment of the patient’s quality of life and also to the detriment of the clinicians themselves. All this has repercussions on the timeliness of recourse to palliative care which, if in oncology is generally respected, is not the case in other areas such as cardiovascular care”. The fact that people die from cardiovascular diseases, the leading cause of death in our country, is therefore not a surprise. What is surprising is the persistence of pockets of ignorance among specialists who do not consider palliative care necessary for their patients.
Death is considered a medical failure. Therefore, we prefer not to face it, to the detriment of the patient and also of the clinician
Augusto Caraceni, National Cancer Institute of Milan
The great knot of domicile
Finally, the research shows that patients and doctors share the desire to be able to receive treatment and spend their last days at home. Today, this is increasingly possible thanks to the networks, which where they exist are implemented by scientific societies, associations and the non-profit world in collaboration with public providers. «Of course, in theory everyone responds by preferring their own domicile. But I point out an issue that is still upstream, which is thereThe current lack of implementation of specialist palliative care services in hospital facilities» Caraceni points out. So much so that the data from the Ipsos survey «show that where dedicated and functioning structures exist in the area, as in the case of the North West, there is a growing desire to be taken care of by competent professionals in hospices». Also because home care will not be able to provide all the answers to the future that awaits us, made up of many lonely people, with reduced pensions, aging and chronicity.
Vidas Children’s Relief Home in Milan
Photo: a home support service by Vidas volunteers
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