**5. Results**

Among the 15 physicians included, only one did not complete the stages of the study and was excluded. They were divided in the following specialties: Clinical oncology (1); Radio-oncology (3); Mastology (3); Hematology (1); Head an neck surgery (1); Thoracic surgery (1); Digestive system surgery (1); Geriatric (2) and Orthopedic (1). The others informations about the physicians included are in **Table 2**.

Regarding the indication of an alternative nutritional route for an artificial diet at the time of hospitalization of a patient with advanced dementia and in an active dying process, the following discourses were obtained from the doctors who opted to indicate the placement of a nasoenteric feeding tube or a gastrostomy (42.84%):

"… There still is the possibility of treatment of the base disease."

"… Patient with poor performance status, functionally dependent, with aspiration pneumonia and sarcopenia. She indicates definitive enteral nutrition. I would


**Table 2.**

*Social professional characteristics.*

*Feeding at the End of Life in Brazilian Amazon: Qualitative Analysis of Medical Indications DOI: http://dx.doi.org/10.5772/intechopen.104509*

first prescribe the passage of a nasoenteric feeding tube and I would program a gastrostomy."

"... Despite the sarcopenia, the patient may still have some time of life if she responds to antibiotic therapy. If the patient does not show a satisfactory response, no invasive procedure should be indicated, and nutrition should be interrupted."

"... I would indicate enteral nutrition due to the severe status and clinical signs and symptoms of the patient."

"I would indicate endoscopic gastrostomy, which permits a satisfactory nutritional route of easy manipulation and that would avoid discomfort and frequent losses such as those occurring with nasoenteric feeding tubes."

The following responses were obtained from the professionals who were against the indication of an alternative route for an artificial diet:

"... Despite the short duration of Alzheimer's disease, the patient is in an advanced phase of the disease and is dependent on all her basic daily life activities. An alternative route (nasoenteric feeding tube or gastrostomy) is not indicated in these cases since it does not reduce the risk of aspiration. The decision is shared and, since the patient is already monitored by a PC team, probably it would be easier for her daughter to accept not to use an alternative nutrition route."

"No additional nutrition route due to the reserved clinical signs and symptoms of the patient, with no perspective of reversal of the basal clinical condition, with a strong negative impact on the quality of life of her relatives."

"... I would maintain the indication of the oral route because it would be less invasive and painful for the patient."

"... A patient with a progressive incurable disease and multiple infectious intercurrences over the last year, so that the current hospitalization could be considered to involve the end of life care."

## **6. Discussion**

#### **6.1 Epidemiology and dementia definition**

In the US, Alzheimer's disease is a condition whose mortality has been increasing and a recent analysis has demonstrated that in 2010 about 32% of the deaths in elderly were due to the evolution and secondary complications of dementia. This number is projected to increase to 43% by 2050. According to the World Health Organization (WHO), is estimated about 50 million people with dementia around the world and is expected to triplicate this number by 2050 [14].

Several instruments have been developed to assess the severity and staging of dementias. One of these is the FAST scale (Functional Assessment Staging) and it is divided into 16 stages of progression (normal to severe dementia). FAST scale has no interference with low education and gives more details of the functional stages of severe dementia [15].

#### **6.2 Artificial diet indication**

There is little scientific evidence about the benefits of the use of artificial nutrition for older patients with advanced dementia [16, 17]. However, when feeding difficulties and weight loss occur, it is necessary to decide between about continuing to offer food by the oral route or placing a feeding tube (enteric tube or endoscopic gastrostomy) [18]. The

estimate is that more than one-third of patients with severe cognitive impairment admitted on a home care basis in the US are being fed through a tube for artificial nutrition [9].

Patients with dementia usually experience feeding difficulties in addition to the decline of cognitive, language, and functional skills given the progressive neurodegenerative process. The reduction of oral intake in the presence of advanced dementia is expected, not only due to nutritional problems but also due to the natural course of the disease [18]. Another theory suggests that patients with advanced dementia have reduced calorie needs due to their low basal metabolic rate and inactivity. Besides, as is the case for other advanced clinical conditions, patients are expected to eat less as part of the natural progression towards the end of life [18, 19]. However, it is important to distinguish between death due to lack of nutrition and hydration and the dying process in which failure to eat and drink is due to the natural dying process secondary to a chronic disease in the absence of therapy that modifies the disease. In the latter case, maintaining artificial nutrition could be a form of "forced feeding" and improper treatment. However, the initiation of an artificial diet and hydration has been experienced as a basic form of care that prevents death from starvation [19].

A recent Cochrane meta-analysis concluded that the use of artificial nutrition did not prolong the survival of patients with advanced dementia compared to a comfort diet. However, most of the studies included were observational and the absence of randomized clinical studies limited the quality of information [18].

#### **6.3 Risks of artificial diet indication**

Feeding tubes are associated with countless adverse effects that have not yet been properly quantitated. The current literature suggests rates of complications ranging from 32 to 70%. Also, keeping the feeding tube properly positioned in patients with dementia it may requires physical restraint or pharmacological sedation, which may negatively affect the quality of life of patients in these conditions. The patients may also be deprived of the pleasure of eating by mouth and of the interpersonal interaction brought about by nutrition [18]. In addition, there are problems related to the inadvertent removal of the tube by the patients, leading to the need for physical or pharmacological restraint [19]. The complications most frequently described are pain and others directly related to tube placement (e.g., infection, bleeding, increased risk of aspiration, increased risk of pressure ulcers, gastrointestinal symptoms such as reflux, diarrhea and constipation, increased incidence of physical or chemical restraint to prevent tube removal by the patient, volemic overload leading to increased pulmonary edema, and peripheral edema). Also, the increase in the volume of airway secretions in the presence of edema may increase the perception of hunger [9].

When the artificial diet and hydration are discontinued, the dehydration caused is isotonic and causes less thirst than the hypertonic dehydration that occurs when only the artificial diet is discontinued. Besides, dehydration may lead to increased dying comfort because it reduces the occurrence of secretions in the respiratory and gastrointestinal systems, thus also reducing vomiting and diarrhea. It may also reduce the volume of urine in patients with incontinence, leading to fewer skin irritations. Dehydration causes a reduced release of vasopressin and there is some evidence that it also reduces the release of endorphin and the perception of pain [14].

Other mechanisms whereby the discontinuation of an artificial diet and hydration leads to more comfort for the patient, probably concerning the formation of ketone bodies. The increased formation of ketones leads also to the formation of

g-aminobutyric acid which therefore acts as an inhibitory brain neurotransmitter and reduces the occurrence of convulsion [14].

#### **6.4 Medical prescription**

Physicians can prescribe artificial nutrition and hydration as a form of care based on ethical principles more than on scientific evidence and motivated by their personal belief that providing food and water satisfies basic human needs [19]. Physicians and other health professionals play an important role in the perpetuation of excessive indication and use of feeding tubes for patients with advanced dementia. One should consider some misunderstandings among these professionals, such as the fact that the risk of bronchoaspiration and pneumonia is an important factor to be considered for the indication of a feeding tube [9]. However, this scenario is not unique to Brazil. A recent systematic review shows that professionals from other countries, such as the USA, Japan and Israel, have not applied the latest evidence to their clinical practice either [20].

A systematic review of therapeutic decisions regarding artificial diet and hydration for patients at risk of reduced mental capacity has revealed that that the first reason behind the initiation of the two interventions, including patients with dementia, is to prolong life. However, there is evidence indicating that neither approach, when started in patients with advanced dementia, courses with increased survival or improves the quality of life of these patients. Indeed, enteral nutrition through a tube places the patient at risk for countless complications and deprives them of their dignity [9].

However, the absence of artificial nutrition may cause dissatisfaction among the patient's relatives since it is widely felt culturally that feeding is symbolically associated with the act of caring. Also, it is felt that, when artificial nutrition is not started, the patient will suffer hunger and thirst in the absence of adequate oral intake [18]. It is common to observe that the cultural conceptions of nutrition as "basic care" conflict with its medical-legal definition since this is a form of technological intervention. Research specifically focusing on removing or refusing nutrition and hydration has demonstrated that the ensuing death is not particularly painful. However, these investigations have been conducted only on older, frail and/or sick patients in the final phase of life [19, 21].

#### **6.5 Recognizing signs of the end of the life**

Conducting a prognostic assessment and identifying signs of an active process of death are constant challenges in medical practice. Especially between non-palliative health care professionals and the biggest difficulty to recognize signs of imminent death. The inconsistencies to make a prognostic analysis can reflect insufficient medical training in medical schools and graduate programs [22].

A recent study carried out with patients with oncological diseases in the final stage identified that for the recognition of imminent death, PPS was the most important factor among doctors, followed by the presence of Cheyne-Stokes breathing, declining clinical condition, agitation or lowering of the level of consciousness and noisy breathing due to hypersecretion of the airways in addition to peripheral cyanosis. Surprisingly, there was no difference in the ability to do prognostic analysis between older doctors, suggesting that clinical experience alone may not optimize the ability to predict [22].

Symptoms related to imminent death are: patient restricted to bed, decreased level of consciousness, patient able to swallow small sips of fluids and the patient loses the ability to ingest medications orally [23].

Both the health team and family members have doubts about the definition of endof-life. Due to this uncertainty and the unpredictability of the evolution of the patient's condition, clinical support must be specifically focused on the individual's needs [24].

#### **6.6 Advanced care planning**

Anticipated directives were developed in the United States in the 1960s with the aim to empower patients and improve professionals' and family caregivers' compliance with patient preferences in the event of loss of decision-making capacity [25].

A recent population study has demonstrated that people are more afraid of a diagnosis of dementia than of a diagnosis of cancer (21% vs. 18%) and this fear is especially common among persons older than 60 years (29% are more afraid of being diagnosed with dementia and only 9% are more afraid of being diagnosed with cancer). There are countless reasons for this fear, among them: loss of memory, loss of autonomy, becoming dependent on another person for self-care, loss of dignity, the possibility of suffering, and the increased health costs [14].

Most insertions of a feeding tube occur during hospital admission when specialists and clinicians have no relationship with the relatives and prescribe health care under pressure from family and caregivers regarding the initiation of artificial nutrition. It is necessary to start early during the course of dementia the discussions about artificial diet and hydration [9].

Anticipated wish directives specifying whether or not the patient wishes to receive artificial nutrition and hydration if he/she should progress to an advanced stage of dementia, represent a manner of guaranteeing the autonomy of the patient, regardless of the family's desire [14].
