Difficult decisions for longterm tube-feeding
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* Guido M.A. Van Rosendaal
* Marja J. Verhoef

We read with interest the recent article by Susan Mitchell and Fiona Lawson on decision-making for long-term tube-feeding in cognitively impaired elderly people.1 We have made similar observations,[2–4] mostly with elderly or cognitively impaired people, and we have interviewed substitute decision-makers prospectively. We have attempted to study situations in which substitute decision-makers declined tube-feeding, as suggested by Margaret Brockett in the accompanying editorial,5 but we were unable to identify any such circumstance in 18 months of study at 2 large urban hospitals.

The need to improve the decision-making process is underscored by the observation that some substitute decision-makers regret their decision after they have experienced the long-term outcome and that a substantial number would not choose the same intervention for themselves if they were in a similar situation. Emotional factors and deeply ingrained societal values play an important role in these situations. Providing food is a core value in a nurturing society, and the decision to forgo nutritional support is tantamount to deciding that a loved one will die. There is often a desperate hope for a miraculous recovery or that some new medical break-through will eventually result in a cure.

Nutritional support is less easily perceived as life support than are some of the more dramatic interventions that modern health technology can provide. Yet it is often provided for this purpose without a clear view of the possible negative results. Individuals faced with decisions about long-term tube-feeding may not have a clear concept of quality-of-life issues and may be suspicious that any suggestion to limit care stems from a desire of health care professionals to conserve resources rather than to optimize the quality of care. A time-limited trial of nutritional support could be effective in some situations and would include the identification of goals to be achieved and a commitment to review the decision if these goals are not met. Substitute decision-makers may need help in understanding that it is ethically acceptable to decide to discontinue nutritional support and allow death to occur if this is inevitable.

## References

1.  1. Mitchell SL, Lawson FME. Decision-making for long-term tube-feeding in cognitively impaired elderly people. CMAJ 1999;160(12):1705-9.
    
    [Abstract/FREE Full Text](http://www.cmaj.ca/lookup/ijlink/YTozOntzOjQ6InBhdGgiO3M6MTQ6Ii9sb29rdXAvaWpsaW5rIjtzOjU6InF1ZXJ5IjthOjQ6e3M6ODoibGlua1R5cGUiO3M6NDoiQUJTVCI7czoxMToiam91cm5hbENvZGUiO3M6NDoiY21haiI7czo1OiJyZXNpZCI7czoxMToiMTYwLzEyLzE3MDUiO3M6NDoiYXRvbSI7czoyMjoiL2NtYWovMTYxLzcvNzk4LjIuYXRvbSI7fXM6ODoiZnJhZ21lbnQiO3M6MDoiIjt9) 

2.  2. Van Rosendaal GMA, Verhoef MJ, Mace SR, Kinsella TD. Decision-making and outcomes for percutaneous endoscopic gastrotomy: a pilot study. J Clin Gastroenterol 1997;24:71-3.
    
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3.  3. Van Rosendaal GMA, Verhoef MJ, Kinsella TD. Patient and surrogate decisions re percutaneous endoscopic gastrotomy (PEG) placement. Am J Gastroenterol 1997;92:1665.
    
    [CrossRef](http://www.cmaj.ca/lookup/external-ref?access_num=10.1016/S0140-6736(75)92790-7&link_type=DOI) 
    
    [PubMed](http://www.cmaj.ca/lookup/external-ref?access_num=51154&link_type=MED&atom=%2Fcmaj%2F161%2F7%2F798.2.atom) 
    
    [Web of Science](http://www.cmaj.ca/lookup/external-ref?access_num=A1975AM90800014&link_type=ISI) 

4.  4. Verhoef MJ, Van Rosendaal GMA, Kinsella TD. Follow-up study of patients undergoing percutaneous endoscopic gastrotomy (PEG) placement: patient outcomes [abstract]. Am J Gastroenterol 1998;93:1761.
    
    [PubMed](http://www.cmaj.ca/lookup/external-ref?access_num=8495130&link_type=MED&atom=%2Fcmaj%2F161%2F7%2F798.2.atom) 

5.  5. Brockett M. Substitute decision-making for cognitively impaired older people. CMAJ 1999;160(12):1721-3.
    
    [FREE Full Text](http://www.cmaj.ca/lookup/ijlink/YTozOntzOjQ6InBhdGgiO3M6MTQ6Ii9sb29rdXAvaWpsaW5rIjtzOjU6InF1ZXJ5IjthOjQ6e3M6ODoibGlua1R5cGUiO3M6MzoiUERGIjtzOjExOiJqb3VybmFsQ29kZSI7czo0OiJjbWFqIjtzOjU6InJlc2lkIjtzOjExOiIxNjAvMTIvMTcyMSI7czo0OiJhdG9tIjtzOjIyOiIvY21hai8xNjEvNy83OTguMi5hdG9tIjt9czo4OiJmcmFnbWVudCI7czowOiIiO30=)