- Email: [email protected]
Efficacy and ethics of artificial nutrition in patients with neurologic impairments in home care
Journal of Clinical Neuroscience 20 (2013) 220–223
Contents lists available at SciVerse ScienceDirect
Journal of Clinical Neuroscience journal homepage: www.elsevier.com/locate/jocn
Clinical Study
Efficacy and ethics of artificial nutrition in patients with neurologic impairments in home care Shuzo Shintani ⇑ Department of Neurology, JA Toride Medical Center, 2-1-1 Hongoh, Toride City, Ibaraki 302-0022, Japan
a r t i c l e
i n f o
Article history: Received 21 November 2011 Accepted 20 January 2012
Keywords: Efficacy Ethics Home care Home parenteral nutrition Percutaneous endoscopic gastrostomy
a b s t r a c t Outcomes, particularly survival, for home-care patients with neurologic impairments who receive artificial nutrition, such as home parenteral nutrition (HPN) or percutaneous endoscopic gastrostomy (PEG) feeding, remain unclear. The efficacy of tube feeding for life prolongation in elderly patients remains controversial. The aim of this study was to assess the survival of elderly patients with neurologic impairments after the start of HPN or PEG. We retrospectively evaluated 80 patients with neurologic impairments who had received home care before they died. They were divided into three groups according to feeding method: oral-intake group (n = 23), HPN group (n = 21) and PEG group (n = 36). The factors considered were: age; survival period after commencement of home care; swallowing function; serum albumin concentration; level of activities of daily living (ADL); and behavioral, cognitive and communication functions. Survival periods of the patients in the PEG (736 ± 765 days) and HPN (725 ± 616 days) groups were twice that of the self-feeding oral-intake group (399 ± 257 days) despite lower serum albumin concentration (for PEG patients), reduced swallowing function and cognitive function, and poorer levels of ADL at the start of home care. Almost all patients were incapable of deciding whether they should receive artificial nutrition due to dementia or poor comprehension. Physicians should provide clinical evidence to families before commencing PEG feeding or HPN and support their decisions to maintain the dignity of the patient. Ó 2012 Elsevier Ltd. All rights reserved.
1. Introduction Since World War II the life expectancy for Japanese people has increased markedly, with a decreasing death rate for all ages that has accompanied improvements in public health, advances in medicine and medical technologies, and improvement in the standard of living. In the 50 years to 2009 in Japan, life expectancy increased by about 14 years for men and 16 years for women, reaching 79.6 years and 86.4 years, respectively. To our knowledge, Japanese people now have the longest life expectancies in the world. Until 1970, the increased longevity in Japan reflected mainly the decreases in death rates for infants and small children; more recently, a decreasing death rate in the elderly has contributed greatly to the increase in average life expectancy. The number of elderly Japanese people requiring long-term care as they are bedridden or have dementia has been increasing. In 2025, the number of physically weak elderly patients requiring medical, nursing and social support is expected to be 2.6 million. The number of bedridden elderly patients with and without dementia will be 2.3 million (Fig. 1). ⇑ Tel.: +81 297 74 5551; fax: +81 297 72 0120. E-mail address: [email protected] 0967-5868/$ - see front matter Ó 2012 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.jocn.2012.01.054
The capacity of nursing homes and nursing institutions is limited in Japan; furthermore, elderly Japanese patients prefer home care to institutional care. The difficulties for family members providing long-term care to bedridden elderly patients at home causes stress, and may undermine the relationships between family members: an increasingly serious issue. For these reasons, a long-term care insurance system (Kaigo Hoken) was established in Japan in 2000. This system provides social support to the elderly who require long-term care and enables them to maintain their dignity by being self-sufficient. With increasing numbers of patients with neurologic impairments requiring home care, their supply of nutrition has become an important issue. Almost all of these patients have swallowing dysfunction (dysphagia) and cognitive dysfunction (dementia), and are dependent in their activities of daily living (ADL) at home. The indication for artificial nutrition, such as percutaneous endoscopic gastrostomy (PEG) feeding or home parenteral nutrition (HPN) is now being discussed for these patients, but remains controversial in Japan. The decision to introduce or discontinue PEG feeding or HPN in patients with severe neurologic impairments is a serious issue. We describe here the basic features of different methods of feeding for patients with neurologic disorders who are cared for at home.
221
S. Shintani / Journal of Clinical Neuroscience 20 (2013) 220–223
Table 2 Characteristics of 80 patients with neurologic impairments who received three methods of nutrition in home care
Mean age when home care commenced (years) Survival period after home care commenced (days) Mean level of dysphagia Mean serum albumin concentration (g/dL) Mean level of activities of daily living Mean level of dementia ⁄
⁄⁄
Oral intake (n = 23)
HPN (n = 21)
PEG (n = 36)
76.9 ± 8.7
78.7 ± 7.7
77.3 ± 8.0
725 ± 616
736 ± 765
⁄
399 ± 257
1.9 ± 0.7⁄⁄⁄ 3.4 ± 0.5
3.7 ± 0.9 3.4 ± 0.6
4.4 ± 0.8 3.0 ± 0.5⁄⁄
3.3 ± 0.6⁄⁄⁄
4.4 ± 0.7
4.5 ± 0.8
3.6 ± 1.1
3.9 ± 1.1
⁄⁄
2.4 ± 1.1
⁄⁄⁄
p < 0.05, p < 0.01, p < 0.001, by t-test compared with other groups. HPN = home parenteral nutrition, PEG = percutaneous endoscopic gastrostomy. Variables were scored from 1 to 5 (1 = normal or slightly involved, 2 = mildly involved, 3 = moderately involved, 4 = severely involved, 5 = extremely involved) as described in the text.
Fig. 1. Bar chart showing numbers of physically weak elderly patients and bedridden elderly patients with and without dementia in Japan.
2. Methods We initiated medical and nursing home care from our hospital in 1992. All patients receiving home care had been admitted initially to our Departments of Neurology, Neurosurgery and/or Internal Medicine. After discharge, a team consisting of a doctor, a visiting nurse, a home-helper, a rehabilitation specialist and a medical social worker followed them up. Services provided at home to patients included management of health care and daily function by the visiting doctor, dentist, pharmacist, dietitian and hygiene specialist; nursing care by the visiting nurse team; home chore assistance by the visiting home-helper; rehabilitation at home by a visiting rehabilitation specialist; and bathing by a visiting bathing team. A nursing institution near the home provided training in daily functions and prepared meals. Bathing was also offered at a day-care center. A limited stay for up to several weeks was available at the nursing institution. We retrospectively evaluated 80 patients with neurologic impairments who received home care through our hospital before their deaths. Patients were divided into three groups according to the feeding method at home: oral-intake group (n = 23), HPN group (n = 21) and PEG feeding group (n = 36) (Table 1). When home care started we recorded the patient age and measured: swallowing function (dysphagia); serum albumin concentration; ADL; and behavioral, cognitive and communicative function (dementia) (Table 2). We compared the three groups in terms of these factors as well as survival period after home care commenced. No patient, not even those with motor neurone diseases, received mechanical ventilation when their respiratory functions deteriorated at the end stage of their illnesses. Table 1 Neurologic impairments of 80 patients who received three methods of nutrition supply in home care
Cerebral infarction/cerebral hemorrhage/SAH Senile dementia of Alzheimer type Parkinson’s disease ALS/SCD/NPH/HC
Oral intake (n = 23)
HPN (n = 21)
PEG (n = 36)
17
10
23
2 1 3
4 3 4
3 7 3
ALS = amyotrophic lateral sclerosis, HC = Huntington chorea, HPN = home parenteral nutrition, NPH = normal pressure hydrocephalus, PEG = percutaneous endoscopic gastrostomy, SAH = subarachnoid hemorrhage, SCD = spinocerebellar degeneration.
Swallowing function was assessed as follows:1 Level 1 – No detectable abnormalities in swallowing Level 2 – Delay, disorder and/or weakness of one or more components of swallowing (oral preparatory, oral, pharyngeal and laryngeal) that adversely affects bolus management and delivery resulting in a mildly increased risk of swallowing impairment and aspiration Level 3 – Delay, disorder and/or weakness of several components of swallowing, resulting in a moderately increased risk of swallowing impairment and aspiration Level 4 – Delay, disorder and/or weakness of several components of swallowing, resulting in a substantially increased risk of swallowing impairment and aspiration (may include observation of respiratory distress, choking, coughing, color change, wet or hoarse vocal quality, or delayed oral or pharyngeal transit) Level 5 – No response to food stimuli; no initiation of a swallowing sequence obtained over several attempts The level of ADL was assessed as follows: Level 1 – Independent in ADL and able to go outside the home without any assistance Level 2 – Almost independent in ADL at home, but unable to go outside the home without assistance Level 3 – Partially independent in ADL at home, requiring some help with bed-to-wheelchair transfer, eating, dressing, toileting and bathing Level 4 – Completely dependent in ADL at home, but out of bed in the wheelchair during daytime Level 5 – Completely dependent in ADL at home; bedridden all day with feeding and toileting in bed Behavioral, cognitive and communicative functions were assessed as follows: Level 1 – Independent despite subtle dementia Level 2 – Almost independent, requiring some support; usually makes mistakes in writing, communicating, shopping and monetary calculations without support Level 3 – Dependent in dressing, eating and toileting; abnormal behaviors sometimes occur, such as incontinence, excitement with hallucinations, crying, purposeless wandering, sexual abnormalities and unhygienic behaviors Level 4 – The abnormal behaviors above are usually apparent Level 5 – Akinetic mutism (‘‘vegetative state’’)
222
S. Shintani / Journal of Clinical Neuroscience 20 (2013) 220–223
3. Results The characteristics of the 80 patients are described in Tables 1 and 2. The mean age when home care started did not significantly differ among these three groups, but mean levels of dysphagia (p < 0.001), ADL dysfunction (p < 0.001) and dementia (p < 0.01) were significantly lower in the oral-intake group than in the other groups as determined by the t-test. The concentration of serum albumin was significantly lower (p < 0.01) in the PEG feeding group than in the other groups. The survival period after home care started was significantly shorter (p < 0.05) in the oral-intake group (399 ± 257 days) than in the other groups (725 ± 616 days in the HPN group and 736 ± 765 days in PEG group) as determined by the t-test.
Regarding the wishes of the patients, we are not sure whether these patients actually wanted artificial nutrition for life prolongation, because almost all the patients were not capable of deciding whether or not they should receive artificial nutrition (PEG feeding or HPN) when their home care started owing to dementia or poor comprehension. Attitudes towards life-prolonging measures vary greatly between countries. In Japan, these decisions are usually made by family members, particularly by the head of the household. Japanese family members usually choose artificial nutrition for the relatives. The user’s financial contribution towards PEG feeding or HPN for bedridden patients in home care is low in Japan. Presently, the amount is about $300–400 per month in the longterm Japanese care insurance system (Kaigo Hoken) established in 2000. This affordability might encourage the choice for artificial nutrition by family members.
4. Discussion
5. Conclusion
The outcomes, particularly survival, after the start of HPN or PEG feeding in home-care patients with severe neurologic impairments remain unclear. The efficacy of tube feeding for life prolongation in elderly patients with dementia remains controversial. However, this study demonstrates that the patients with PEG feeding and HPN showed survival periods twice that of the self-feeding oral-intake patients after commencing home care despite lower serum albumin concentration (for PEG patients), reduced swallowing function and cognitive function, and poorer levels of ADL. Hypoalbuminemia has been shown to be a poor predictor of survival in elderly patients with dementia.2 Malnutrition induced by dysphagia results in immune dysfunction and aspiration pneumonia, and causes decubitus ulcers of the skin. Substantial nutrition support by PEG or HPN minimizes these serious conditions.3 Sufficient nutrition using various feeding methods is the most important single goal in caring for patients in home care. We believe that the home-care system, including its efforts to ensure adequate feeding, contributes to the high life expectancy in Japan and should be similarly realized worldwide. When the amount of food taken orally is not sufficient to support the life of elderly patients, despite swallowing training, additional feeding by PEG or HPN is recommended. Since its introduction in 1980 as an alternative to open surgery for creating a gastrocutaneous fistula, PEG has revolutionized the approach to enteral alimentation.4,5 Patients with dysphagia due to neurologic disorders have been fed by PEG in nursing homes and community homes.6–11 Higaki et al. reported that there was no evidence supporting a poorer prognosis after PEG in elderly people with dementia than in the elderly with preserved cognitive function, and more than 20% of the patients with dementia lived more than 3 years after PEG feeding commenced in a retrospective cohort study of 311 consecutive Japanese patients who underwent PEG.12 An inadequate intake of food and water is often thought to lead to hunger, thirst and early death. Tube feeding is believed to prevent aspiration pneumonia and other infections, improve functional status, promote quality of care and prolong life.13–15 However, is this theory universal? Can we generalize that HPN or PEG feeding is superior or not inferior to self-feeding by oral intake from the viewpoint of survival? Does tube feeding indeed contribute to life prolongation in bedridden patients with dementia? Many reviews do not support these assumptions. Recent observational studies have confirmed high short-term mortality rates for tube feeding in a cohort of hospitalized patients with acute illness16 and patients with advanced dementia.17–23 In Japan, Tokuda and Koketsu reported that feeding-tube placement may be a risk factor for mortality, and tube feeding actually has an adverse effect on long-term survival, at least in the cohort of elderly patients from a nursing home hospitalized with acute illness.24
In this study, we found that the patients with PEG feeding and HPN survived twice as long as patients using self-feeding oral-intake after commencing home care, despite lower serum albumin concentration (for PEG patients), reduced swallowing function and cognitive function, and poorer levels of ADL. Physicians should provide clinical evidence to the family members before commencing PEG feeding or HPN and support their decisions to maintain the dignity of the patients. References 1. Mann G, Hankey G, Cameron D. Swallowing function after stroke: prognosis and prognostic factors at 6 months. Stroke 1999;30:744–8. 2. Nair S, Hertan H, Pitchumoni CS. Hypoalbuminemia is a poor predictor of survival after percutaneous endoscopic gastrostomy in elderly patients with dementia. Am J Gastroenterol 2000;95:133–6. 3. Sartori S, Trevisani L, Tassinari D, et al. Prevention of aspiration pneumonia during long-term feeding by percutaneous endoscopic gastrostomy: might cisapride play any role? An open pilot study. Support Care Cancer 1994;2:188–90. 4. Gauderer MW, Ponsky JL, Izant Jr RL. Gastrostomy without laparotomy: a percutaneous technique. J Pediatr Surg 1980;15:872–5. 5. Ponsky JL, Gauderer MW. Percutaneous endoscopic gastrostomy: a nonoperative technique for feeding gastrostomy. Gastrointest Endosc 1981;27:9–11. 6. Bourdel-Marchasson I, Dumas F, Pinganaud G, et al. Audit of percutaneous endoscopic gastrostomy in long-term enteral feeding in a nursing home. Int J Qual Health Care 1997;9:297–302. 7. Britton JE, Lipscomb G, Mohr PD, et al. The use of percutaneous endoscopic gastrostomy (PEG) feeding tubes in patients with neurological disease. J Neurol 1997;244:431–4. 8. Callahan CM, Haag KM, Weinberger M, et al. Outcomes of percutaneous endoscopic gastrostomy among older adults in a community setting. Am Geriatr Soc 2000;48:1048–54. 9. Fertl E, Steinhoff N, Schofl R, et al. Transient and long-term feeding by means of percutaneous endoscopic gastrostomy in neurological rehabilitation. Eur Neurol 1998;40:27–30. 10. James A, Kapur K, Hawthorne AB. Long-term outcome of percutaneous endoscopic gastrostomy feeding in patients with dysphagic stroke. Age Ageing 1998;27:671–6. 11. Rozier A, Ruskone Fourmestraux A, Rosenbaum A, et al. Role of percutaneous endoscopic gastrostomy in amyotrophic lateral sclerosis. Rev Neurol (Paris) 1991;147:174–6. 12. Higaki F, Yokota O, Ohishi M. Factors predictive of survival after percutaneous endoscopic gastrostomy in the elderly: is dementia really a risk factor? Am J Gastroenterol 2008;103:1011–6. 13. Bussone M, Lalo M, Piette F, et al. Percutaneous endoscopic gastrostomy: its value in assisted alimentation in malnutrition in elderly patients. Apropos of 101 consecutive cases in patients over 70 years of age. Ann Chir 1992;46:59–66. 14. Kaw M, Sekas G. Long-term follow-up of consequences of percutaneous endoscopic gastrostomy (PEG) tubes in nursing home patients. Dig Dis Sci 1994;39:738–43. 15. Kawabata H, Murakami M, Kisa K, et al. Incidence of community-associated Methicillin-resistant Staphylococcus aureus infections in a community hospital. J Rural Med 2011;6:22–5. 16. Abuksis G, Mor M, Segal N, et al. Percutaneous endoscopic gastrostomy: high mortality rates in hospitalized patients. Am J Gastroenterol 2000;95:128–32. 17. Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: a review of the evidence. JAMA 1999;282:1365–70.
S. Shintani / Journal of Clinical Neuroscience 20 (2013) 220–223 18. Gillick MR. Rethinking the role of tube feeding in patients with advanced dementia. N Engl J Med 2000;342:206–10. 19. Meier DE, Ahronheim JC, Morris J, et al. High short-term mortality in hospitalized patients with advanced dementia: lack of benefit of tube feeding. Arch Intern Med 2001;161:594–9. 20. Finucane TE, Bynum JP. Use of tube feeding to prevent aspiration pneumonia. Lancet 1996;348:1421–4. 21. Mitchell SL, Kiely DK, Lipsitz LA. The risk factors and impact on survival of feeding tube placement in nursing home residents with severe cognitive impairment. Arch Intern Med 1997;157:327–32.
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22. Mitchell SL, Kiely DK, Lipsitz LA. Does artificial enteral nutrition prolong the survival of institutionalized elders with chewing and swallowing problems? J Gerontol A Biol Sci Med Sci 1998;53:M207–13. 23. Chouinard J, Lavigne E, Villeneuve C. Weight loss, dysphagia, and outcome in advanced dementia. Dysphagia 1998;13:151–5. 24. Tokuda Y, Koketsu H. High mortality in hospitalized elderly patients with feeding tube placement. Intern Med 2002;41:613–6.
Contents lists available at SciVerse ScienceDirect
Journal of Clinical Neuroscience journal homepage: www.elsevier.com/locate/jocn
Clinical Study
Efficacy and ethics of artificial nutrition in patients with neurologic impairments in home care Shuzo Shintani ⇑ Department of Neurology, JA Toride Medical Center, 2-1-1 Hongoh, Toride City, Ibaraki 302-0022, Japan
a r t i c l e
i n f o
Article history: Received 21 November 2011 Accepted 20 January 2012
Keywords: Efficacy Ethics Home care Home parenteral nutrition Percutaneous endoscopic gastrostomy
a b s t r a c t Outcomes, particularly survival, for home-care patients with neurologic impairments who receive artificial nutrition, such as home parenteral nutrition (HPN) or percutaneous endoscopic gastrostomy (PEG) feeding, remain unclear. The efficacy of tube feeding for life prolongation in elderly patients remains controversial. The aim of this study was to assess the survival of elderly patients with neurologic impairments after the start of HPN or PEG. We retrospectively evaluated 80 patients with neurologic impairments who had received home care before they died. They were divided into three groups according to feeding method: oral-intake group (n = 23), HPN group (n = 21) and PEG group (n = 36). The factors considered were: age; survival period after commencement of home care; swallowing function; serum albumin concentration; level of activities of daily living (ADL); and behavioral, cognitive and communication functions. Survival periods of the patients in the PEG (736 ± 765 days) and HPN (725 ± 616 days) groups were twice that of the self-feeding oral-intake group (399 ± 257 days) despite lower serum albumin concentration (for PEG patients), reduced swallowing function and cognitive function, and poorer levels of ADL at the start of home care. Almost all patients were incapable of deciding whether they should receive artificial nutrition due to dementia or poor comprehension. Physicians should provide clinical evidence to families before commencing PEG feeding or HPN and support their decisions to maintain the dignity of the patient. Ó 2012 Elsevier Ltd. All rights reserved.
1. Introduction Since World War II the life expectancy for Japanese people has increased markedly, with a decreasing death rate for all ages that has accompanied improvements in public health, advances in medicine and medical technologies, and improvement in the standard of living. In the 50 years to 2009 in Japan, life expectancy increased by about 14 years for men and 16 years for women, reaching 79.6 years and 86.4 years, respectively. To our knowledge, Japanese people now have the longest life expectancies in the world. Until 1970, the increased longevity in Japan reflected mainly the decreases in death rates for infants and small children; more recently, a decreasing death rate in the elderly has contributed greatly to the increase in average life expectancy. The number of elderly Japanese people requiring long-term care as they are bedridden or have dementia has been increasing. In 2025, the number of physically weak elderly patients requiring medical, nursing and social support is expected to be 2.6 million. The number of bedridden elderly patients with and without dementia will be 2.3 million (Fig. 1). ⇑ Tel.: +81 297 74 5551; fax: +81 297 72 0120. E-mail address: [email protected] 0967-5868/$ - see front matter Ó 2012 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.jocn.2012.01.054
The capacity of nursing homes and nursing institutions is limited in Japan; furthermore, elderly Japanese patients prefer home care to institutional care. The difficulties for family members providing long-term care to bedridden elderly patients at home causes stress, and may undermine the relationships between family members: an increasingly serious issue. For these reasons, a long-term care insurance system (Kaigo Hoken) was established in Japan in 2000. This system provides social support to the elderly who require long-term care and enables them to maintain their dignity by being self-sufficient. With increasing numbers of patients with neurologic impairments requiring home care, their supply of nutrition has become an important issue. Almost all of these patients have swallowing dysfunction (dysphagia) and cognitive dysfunction (dementia), and are dependent in their activities of daily living (ADL) at home. The indication for artificial nutrition, such as percutaneous endoscopic gastrostomy (PEG) feeding or home parenteral nutrition (HPN) is now being discussed for these patients, but remains controversial in Japan. The decision to introduce or discontinue PEG feeding or HPN in patients with severe neurologic impairments is a serious issue. We describe here the basic features of different methods of feeding for patients with neurologic disorders who are cared for at home.
221
S. Shintani / Journal of Clinical Neuroscience 20 (2013) 220–223
Table 2 Characteristics of 80 patients with neurologic impairments who received three methods of nutrition in home care
Mean age when home care commenced (years) Survival period after home care commenced (days) Mean level of dysphagia Mean serum albumin concentration (g/dL) Mean level of activities of daily living Mean level of dementia ⁄
⁄⁄
Oral intake (n = 23)
HPN (n = 21)
PEG (n = 36)
76.9 ± 8.7
78.7 ± 7.7
77.3 ± 8.0
725 ± 616
736 ± 765
⁄
399 ± 257
1.9 ± 0.7⁄⁄⁄ 3.4 ± 0.5
3.7 ± 0.9 3.4 ± 0.6
4.4 ± 0.8 3.0 ± 0.5⁄⁄
3.3 ± 0.6⁄⁄⁄
4.4 ± 0.7
4.5 ± 0.8
3.6 ± 1.1
3.9 ± 1.1
⁄⁄
2.4 ± 1.1
⁄⁄⁄
p < 0.05, p < 0.01, p < 0.001, by t-test compared with other groups. HPN = home parenteral nutrition, PEG = percutaneous endoscopic gastrostomy. Variables were scored from 1 to 5 (1 = normal or slightly involved, 2 = mildly involved, 3 = moderately involved, 4 = severely involved, 5 = extremely involved) as described in the text.
Fig. 1. Bar chart showing numbers of physically weak elderly patients and bedridden elderly patients with and without dementia in Japan.
2. Methods We initiated medical and nursing home care from our hospital in 1992. All patients receiving home care had been admitted initially to our Departments of Neurology, Neurosurgery and/or Internal Medicine. After discharge, a team consisting of a doctor, a visiting nurse, a home-helper, a rehabilitation specialist and a medical social worker followed them up. Services provided at home to patients included management of health care and daily function by the visiting doctor, dentist, pharmacist, dietitian and hygiene specialist; nursing care by the visiting nurse team; home chore assistance by the visiting home-helper; rehabilitation at home by a visiting rehabilitation specialist; and bathing by a visiting bathing team. A nursing institution near the home provided training in daily functions and prepared meals. Bathing was also offered at a day-care center. A limited stay for up to several weeks was available at the nursing institution. We retrospectively evaluated 80 patients with neurologic impairments who received home care through our hospital before their deaths. Patients were divided into three groups according to the feeding method at home: oral-intake group (n = 23), HPN group (n = 21) and PEG feeding group (n = 36) (Table 1). When home care started we recorded the patient age and measured: swallowing function (dysphagia); serum albumin concentration; ADL; and behavioral, cognitive and communicative function (dementia) (Table 2). We compared the three groups in terms of these factors as well as survival period after home care commenced. No patient, not even those with motor neurone diseases, received mechanical ventilation when their respiratory functions deteriorated at the end stage of their illnesses. Table 1 Neurologic impairments of 80 patients who received three methods of nutrition supply in home care
Cerebral infarction/cerebral hemorrhage/SAH Senile dementia of Alzheimer type Parkinson’s disease ALS/SCD/NPH/HC
Oral intake (n = 23)
HPN (n = 21)
PEG (n = 36)
17
10
23
2 1 3
4 3 4
3 7 3
ALS = amyotrophic lateral sclerosis, HC = Huntington chorea, HPN = home parenteral nutrition, NPH = normal pressure hydrocephalus, PEG = percutaneous endoscopic gastrostomy, SAH = subarachnoid hemorrhage, SCD = spinocerebellar degeneration.
Swallowing function was assessed as follows:1 Level 1 – No detectable abnormalities in swallowing Level 2 – Delay, disorder and/or weakness of one or more components of swallowing (oral preparatory, oral, pharyngeal and laryngeal) that adversely affects bolus management and delivery resulting in a mildly increased risk of swallowing impairment and aspiration Level 3 – Delay, disorder and/or weakness of several components of swallowing, resulting in a moderately increased risk of swallowing impairment and aspiration Level 4 – Delay, disorder and/or weakness of several components of swallowing, resulting in a substantially increased risk of swallowing impairment and aspiration (may include observation of respiratory distress, choking, coughing, color change, wet or hoarse vocal quality, or delayed oral or pharyngeal transit) Level 5 – No response to food stimuli; no initiation of a swallowing sequence obtained over several attempts The level of ADL was assessed as follows: Level 1 – Independent in ADL and able to go outside the home without any assistance Level 2 – Almost independent in ADL at home, but unable to go outside the home without assistance Level 3 – Partially independent in ADL at home, requiring some help with bed-to-wheelchair transfer, eating, dressing, toileting and bathing Level 4 – Completely dependent in ADL at home, but out of bed in the wheelchair during daytime Level 5 – Completely dependent in ADL at home; bedridden all day with feeding and toileting in bed Behavioral, cognitive and communicative functions were assessed as follows: Level 1 – Independent despite subtle dementia Level 2 – Almost independent, requiring some support; usually makes mistakes in writing, communicating, shopping and monetary calculations without support Level 3 – Dependent in dressing, eating and toileting; abnormal behaviors sometimes occur, such as incontinence, excitement with hallucinations, crying, purposeless wandering, sexual abnormalities and unhygienic behaviors Level 4 – The abnormal behaviors above are usually apparent Level 5 – Akinetic mutism (‘‘vegetative state’’)
222
S. Shintani / Journal of Clinical Neuroscience 20 (2013) 220–223
3. Results The characteristics of the 80 patients are described in Tables 1 and 2. The mean age when home care started did not significantly differ among these three groups, but mean levels of dysphagia (p < 0.001), ADL dysfunction (p < 0.001) and dementia (p < 0.01) were significantly lower in the oral-intake group than in the other groups as determined by the t-test. The concentration of serum albumin was significantly lower (p < 0.01) in the PEG feeding group than in the other groups. The survival period after home care started was significantly shorter (p < 0.05) in the oral-intake group (399 ± 257 days) than in the other groups (725 ± 616 days in the HPN group and 736 ± 765 days in PEG group) as determined by the t-test.
Regarding the wishes of the patients, we are not sure whether these patients actually wanted artificial nutrition for life prolongation, because almost all the patients were not capable of deciding whether or not they should receive artificial nutrition (PEG feeding or HPN) when their home care started owing to dementia or poor comprehension. Attitudes towards life-prolonging measures vary greatly between countries. In Japan, these decisions are usually made by family members, particularly by the head of the household. Japanese family members usually choose artificial nutrition for the relatives. The user’s financial contribution towards PEG feeding or HPN for bedridden patients in home care is low in Japan. Presently, the amount is about $300–400 per month in the longterm Japanese care insurance system (Kaigo Hoken) established in 2000. This affordability might encourage the choice for artificial nutrition by family members.
4. Discussion
5. Conclusion
The outcomes, particularly survival, after the start of HPN or PEG feeding in home-care patients with severe neurologic impairments remain unclear. The efficacy of tube feeding for life prolongation in elderly patients with dementia remains controversial. However, this study demonstrates that the patients with PEG feeding and HPN showed survival periods twice that of the self-feeding oral-intake patients after commencing home care despite lower serum albumin concentration (for PEG patients), reduced swallowing function and cognitive function, and poorer levels of ADL. Hypoalbuminemia has been shown to be a poor predictor of survival in elderly patients with dementia.2 Malnutrition induced by dysphagia results in immune dysfunction and aspiration pneumonia, and causes decubitus ulcers of the skin. Substantial nutrition support by PEG or HPN minimizes these serious conditions.3 Sufficient nutrition using various feeding methods is the most important single goal in caring for patients in home care. We believe that the home-care system, including its efforts to ensure adequate feeding, contributes to the high life expectancy in Japan and should be similarly realized worldwide. When the amount of food taken orally is not sufficient to support the life of elderly patients, despite swallowing training, additional feeding by PEG or HPN is recommended. Since its introduction in 1980 as an alternative to open surgery for creating a gastrocutaneous fistula, PEG has revolutionized the approach to enteral alimentation.4,5 Patients with dysphagia due to neurologic disorders have been fed by PEG in nursing homes and community homes.6–11 Higaki et al. reported that there was no evidence supporting a poorer prognosis after PEG in elderly people with dementia than in the elderly with preserved cognitive function, and more than 20% of the patients with dementia lived more than 3 years after PEG feeding commenced in a retrospective cohort study of 311 consecutive Japanese patients who underwent PEG.12 An inadequate intake of food and water is often thought to lead to hunger, thirst and early death. Tube feeding is believed to prevent aspiration pneumonia and other infections, improve functional status, promote quality of care and prolong life.13–15 However, is this theory universal? Can we generalize that HPN or PEG feeding is superior or not inferior to self-feeding by oral intake from the viewpoint of survival? Does tube feeding indeed contribute to life prolongation in bedridden patients with dementia? Many reviews do not support these assumptions. Recent observational studies have confirmed high short-term mortality rates for tube feeding in a cohort of hospitalized patients with acute illness16 and patients with advanced dementia.17–23 In Japan, Tokuda and Koketsu reported that feeding-tube placement may be a risk factor for mortality, and tube feeding actually has an adverse effect on long-term survival, at least in the cohort of elderly patients from a nursing home hospitalized with acute illness.24
In this study, we found that the patients with PEG feeding and HPN survived twice as long as patients using self-feeding oral-intake after commencing home care, despite lower serum albumin concentration (for PEG patients), reduced swallowing function and cognitive function, and poorer levels of ADL. Physicians should provide clinical evidence to the family members before commencing PEG feeding or HPN and support their decisions to maintain the dignity of the patients. References 1. Mann G, Hankey G, Cameron D. Swallowing function after stroke: prognosis and prognostic factors at 6 months. Stroke 1999;30:744–8. 2. Nair S, Hertan H, Pitchumoni CS. Hypoalbuminemia is a poor predictor of survival after percutaneous endoscopic gastrostomy in elderly patients with dementia. Am J Gastroenterol 2000;95:133–6. 3. Sartori S, Trevisani L, Tassinari D, et al. Prevention of aspiration pneumonia during long-term feeding by percutaneous endoscopic gastrostomy: might cisapride play any role? An open pilot study. Support Care Cancer 1994;2:188–90. 4. Gauderer MW, Ponsky JL, Izant Jr RL. Gastrostomy without laparotomy: a percutaneous technique. J Pediatr Surg 1980;15:872–5. 5. Ponsky JL, Gauderer MW. Percutaneous endoscopic gastrostomy: a nonoperative technique for feeding gastrostomy. Gastrointest Endosc 1981;27:9–11. 6. Bourdel-Marchasson I, Dumas F, Pinganaud G, et al. Audit of percutaneous endoscopic gastrostomy in long-term enteral feeding in a nursing home. Int J Qual Health Care 1997;9:297–302. 7. Britton JE, Lipscomb G, Mohr PD, et al. The use of percutaneous endoscopic gastrostomy (PEG) feeding tubes in patients with neurological disease. J Neurol 1997;244:431–4. 8. Callahan CM, Haag KM, Weinberger M, et al. Outcomes of percutaneous endoscopic gastrostomy among older adults in a community setting. Am Geriatr Soc 2000;48:1048–54. 9. Fertl E, Steinhoff N, Schofl R, et al. Transient and long-term feeding by means of percutaneous endoscopic gastrostomy in neurological rehabilitation. Eur Neurol 1998;40:27–30. 10. James A, Kapur K, Hawthorne AB. Long-term outcome of percutaneous endoscopic gastrostomy feeding in patients with dysphagic stroke. Age Ageing 1998;27:671–6. 11. Rozier A, Ruskone Fourmestraux A, Rosenbaum A, et al. Role of percutaneous endoscopic gastrostomy in amyotrophic lateral sclerosis. Rev Neurol (Paris) 1991;147:174–6. 12. Higaki F, Yokota O, Ohishi M. Factors predictive of survival after percutaneous endoscopic gastrostomy in the elderly: is dementia really a risk factor? Am J Gastroenterol 2008;103:1011–6. 13. Bussone M, Lalo M, Piette F, et al. Percutaneous endoscopic gastrostomy: its value in assisted alimentation in malnutrition in elderly patients. Apropos of 101 consecutive cases in patients over 70 years of age. Ann Chir 1992;46:59–66. 14. Kaw M, Sekas G. Long-term follow-up of consequences of percutaneous endoscopic gastrostomy (PEG) tubes in nursing home patients. Dig Dis Sci 1994;39:738–43. 15. Kawabata H, Murakami M, Kisa K, et al. Incidence of community-associated Methicillin-resistant Staphylococcus aureus infections in a community hospital. J Rural Med 2011;6:22–5. 16. Abuksis G, Mor M, Segal N, et al. Percutaneous endoscopic gastrostomy: high mortality rates in hospitalized patients. Am J Gastroenterol 2000;95:128–32. 17. Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: a review of the evidence. JAMA 1999;282:1365–70.
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