Introduction
There have been significant advances in accessing the benefits of palliative care for incurable illness. However, there are disparities in access to palliative care (PC), with the majority of services being offered by non-profit organizations (NPOs). In this short letter, we describe the PC services provided by SAMOT, which is a NPO operating in Sicily, Southern Italy.
In 2014, the World Health Assembly Resolution on PC claimed to incorporate PC services into every health care system [Citation1].
Briefly, PC can be described as a multidisciplinary approach with the goal to relieve the suffering of people with life-limiting illnesses and their families by the comprehensive assessment and treatment of physical, psychosocial, and spiritual symptoms [Citation1,Citation2].
Historically, PC services have focused on patients with incurable cancer, but the current view is that access to PC should be based on need rather than diagnosis [Citation3].
Unfortunately, in many health care systems in Europe, PC services are not yet available to all patients with serious incurable diseases.
In Sicily, the biggest island of Southern Italy with about 5 million inhabitants, a service of home PC (SAMOT onlus) was introduced in the 1980s with the goal of providing a comprehensive PC approach for people suffering from incurable diseases (and to their caregivers). SAMOT provides its PC services in five out of the nine regional areas of Sicily.
In this short letter we describe the situation in the Palermo district.
Our home PC services may be required by persons:
suffering from incurable diseases in late stages (with a life expectancy of no more than 6 months) and
should be home assisted by at least one caregiver who should be able to work in synergy with our PC team.
Our services are provided under the responsibility of Regional Health System, which guarantees the economic reimbursement for all the provided PC services by the specialists.
We guarantee scheduled home visits by the PC team and unscheduled visits in case of emergency (after a phone call to the PC team by the patient or its caregivers).
A trained team of doctors, nurses, social workers, and other health care professionals, such as psychologists and dieticians who work jointly, provide specialist PC. They are aimed to provide relief from the symptoms and improving the quality of life of patients.
Our PC services are offered also to the caregivers, because they typically are prone to physical and psychological morbidity (as cited in the literature).
We assist the caregivers on any physical and emotional needs in PC team–caregiver meetings, in which we provide education, skill building, cognitive behavioral therapy, environmental modifications, and stress management. If required we can also provide support at a societal and policy level, such as for claiming insurance reimbursement policies or electronic health technology.
The access to our system of PC is activated after a general practitioner’s advice about the clinical status of the candidate person. All persons matching the above-described criteria are enrolled in our PC services. All persons and caregivers sign an informed consent form.
After enrollment, the PC doctor, the nurse, and the social worker perform the first home visit jointly. Based on the severity of the clinical status of the patient, we can activate two possible levels of home assistance.
If all the distressing symptoms (such as pain) are well managed, we require the activation of the basic level. Here, the care manager is the family care physician, who can provide consultations to PC specialists in any cases where he feels it is appropriate (any member of the team can be involved).
The second level of assistance is the specialistic PC assistance. It is guaranteed to all persons and their caregivers without controlled physical and psychological symptoms. Here, all members of the PC team are required and the care manager is the PC doctor, who establishes the assistance plan based on the needs of the patient. Obviously, the PC doctor works jointly with the general practitioner, sharing with him all the clinical decisions.
In the attempt to support the spiritual needs of the person and their caregivers, we provide the possibility to claim a spiritual assessment, taking into account the spiritual beliefs of every person.
The current staff includes 18 multidisciplinary team members, who are required to receive training in the provision of PC.
The team makes home visits according to a schedule for each assigned patient.
SAMOT keeps direct collaboration with hospices in our regional area (there are 12 hospices in Sicily), so as to guarantee the possibility to access a hospice if the clinical status of patient is rapidly deteriorating and the home management is no longer more possible. The access to a hospice may be guaranteed with a referral from SAMOT or from the family care physician.
Our PC service is provided in a metropolitan area of more than 1200 inhabitants (last census on 01 January 2017).
On 31 December 2016, SAMOT had 1911 persons with untreatable disease.
More than 50% of our patients were greater than 60 years old at the time care was initiated. Mean duration of PC care was of 3.2 months.
The most common symptom for initial referral to our PC service was pain, followed by shortness of breath and fatigue.
SAMOT teams made an average of six visits per week per patient.
Based on symptoms and state of the disease at the inclusion visit, patients are determined to be seen with high (two to three times per week), medium (one time per week), and low (one time every 15 days) frequency. With changes in symptoms, the frequency of visits can be modified.
During home visits, caregivers are trained to provide simple tasks, such as wound care. The insertion of nasogastric tubes or Foley catheters is managed by the nurse during the home visits. Procedures such as thoracentesis or paracentesis can be done at home. The injectable medications can be administered by the nurse at home.
Patients and caregivers are given an emergency phone line where they can reach the physician or nurse at any time. The most common reasons for calls were worsening pain, intractable vomiting, and delirium.
The preferred place of death is discussed with the patient or their caregiver when SAMOT teams are introduced and the appropriate arrangements are made. The majority of patients wish to die at home.
In recent years, home-based PC care has been increasingly considered as an opportunity to reduce the burden of terminal patients care on the family. Physical and psychological distress can occur any time in the course of every incurable illness, so a prompt referral to PC services should be encouraged.
Declaration of interest
The authors have no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.
Additional information
Funding
References
- The World Health Organization (WHO). Sixty-seventh World Health Assembly (WHA). WHA67.19 Agenda item 15.5 24 May 2014.
- Murray S, Kendall M, Mitchell G, et al. Palliative care from diagnosis to death. BMJ: Br Med J (Online); London. 2017 27;356(Feb):j878.
- Solari A, Giordano A, Patti F, et al. Randomized controlled trial of a home-based palliative approach for people with severe multiple sclerosis. Mult Scler. 2017;1:1352458517704078.