The prevalence of chronic diseases, the increase in the average life expectancy and the consequent aging of the population have altered the organization of the different health systems and the directing of human and financial resources. In this way, the need for care directed to chronic diseases, advanced and progressive, appeared at home. At home, the main focus is on the control of symptoms, comfort and quality of life promotion for those outside the possibilities of cure. For these, palliative care has been the response and commitment both to the patients, their families and their caregivers. Individuals who are provided with comprehensive care, psychological support, spiritual support, relief from pain and other symptoms. Nutrition plays an important role on a daily basis as well as at the end of life. It excels in clinical, ethical, cultural and social aspects. Palliative Care and Home Enteral Nutrition Therapy (TNED) are related, food care goes beyond biological and is linked to the patient’s overall care. TNED goes beyond the technical approach if it takes the professionals’ ability to understand the reality of the patient and his family.
Keywords: Palliative care; Enteral nutritional therapy; Home care
Abbrevations: TNED: Home Enteral Nutritional Therapy; TNE: Enteral Nutrition Therapy; WHO: World Health Organization
Home enteral nutritional therapy (TNED) is becoming a common practice. Hospitalization often occurs due to neurological disease, malnutrition due to some type of cancer and other situations where there is an indication of introducing the probe to be able to feed and regain nutritional status. The hospital discharge with food probe, the return to the house at this new condition implies in several changes in the life of the family, the patient and the indicated caregiver. Adequate guidance and assistance to those who will provide such care are needed by practitioners . It should be emphasized that this modality of home care resurfaces in our society with greater volume of users. The high cost of hospital care, the increasing demands arising from the increase in the population’s life expectancy and the commitment to promote health with quality of life [2,3], contribute to the increase of home care. There is demand, it needs greater investment in the management of services and in the elaboration or improvement of public health policies.
The TNED modality, for adults and the elderly, depending on the clinical diagnosis, needs palliative care. Understanding palliative care is one that emphasizes the patient’s “caring”, when the patient no longer responds to treatments considered curative and aims, mainly, to provide a better quality of life for the individual and his family. The greater focus is given to the control of pain, suffering and improvement of other symptoms,
valuing the basic needs of hygiene and nutrition [1-4]. In view of
the experience of our study group, approximately 67% of TNED patients die. The mean TNED time of neurological patients is 180 days whereas other studies have demonstrated the variation of 307 days and 160 days. However, our concern with this issue is whether home enteral nutritional therapy should be considered indicative of palliative care. For patients and their families, the introduction and continuity of TNED, while appropriate, deprives the individual of the sensation of taste which may favor the diminution of their dignity and self-esteem [5,6].
For many professionals working in palliative care, there is a dilemma regarding the use of nutritional therapy for patients. However, nutrition has different meanings beyond biological, and these depend on eating habits, origin and religion. Among other factors, food can involve affection, affection and life. Regarding the administration of NER of nutritional characteristics, preparation, volume, time to be administered, are questions that generate many doubts in the caregiver team. The use of commercial products, those indicated in special nutritional therapies, are not necessarily effective for TNED patients and may make treatment more costly and stressful . On the other hand, the idea of not offering special products or food abstinence provides additional suffering for the patient and his / her relatives. Since disease progression leads to weight loss, muscular atrophy with impact on physical, clinical and psychosocial conditions, which may compromise the individual’s quality of life in palliative care [8,9].
In this condition, the goal of nutritional therapy should prioritize comfort and relief of symptoms, no longer nutritional
adequacy . According to the World Health Organization
(WHO) , home care is considered a health care modality
that should provide care to the patient at home, involving
therapeutic actions, health promotion and disease prevention,
long-term care duration and palliatives. Several studies [1, 4, 8
12] found that the TNED institution did not present differences
in patient survival, however, they provided better quality of life.
In the guidelines for the institution of TNED, for terminal cancer
patients, eight steps are considered for decision making on TNE
at home: clinical condition, symptoms, life expectancy, nutritional
status, conditions and acceptance of oral feeding, psychological
status, integrity of the gastrointestinal tract and the need for
special services to offer the diet . It is also recommended to
re-evaluate treatment results periodically.
According to the American Dietetic Association , nutrition
in patients with advanced disease should offer: emotional
comfort, pleasure, help in reducing anxiety and increase selfesteem
and independence, and allow greater integrity and
communication with their families. Other studies [2,6,14] point
out the difficulty in operationalizing such care at home, which
should be carefully evaluated at the time of the discussion of
the beginning or continuation of TNED. The nutritionist as
responsible for prescribing and monitoring the independent diet
of the pathway, can contribute to clarifying the viable options for
patients and their families. Dietary prescription, above all, should
offer pleasure and comfort. The measures of the TNED should
contribute to the maintenance of the quality of life of the patient.
In palliative care, multiprofessional work is essential for the
patient to have quality of life and dignified survival. Respect,
ethics, sensitivity and sincerity should always guide the team
during treatment. Therefore, it is necessary that professionals
involved in home care have technical knowledge within their
specialty, but also the ability to communicate and understand the
reality of the patient and his family is also necessary. It is essential
that the will of the individual be respected regardless of any
conduct to be performed.