Information essential to make decision about tube feeding of dementia patients
One of the most agonizing decisions families might face can be whether or not to request or approve of a feeding tube for a loved one who is near death. Are we "playing God" by denying tube feeding to our dying loved one as long as he or she can be kept comfortable, or are we "playing God" by requesting tube feeding, with or without medical agreement?
If the dying person left plain instructions about end-of-life medical care, made during a time of good cognition, the decision can be easier, though still fraught with emotional pain. Few of us want to be put in this situation, but many of us find ourselves facing medical people who need to know what we want done.
There's no easy answer. Spiritual and religious views of the decision maker often enter the picture, even if the ill person left explicit instructions. When religious views mesh with the dying loved one's views, the situation is still difficult, but a bit easier than when views clash.
If mom or dad expressed a wish to be kept alive for as long as possible with feeding tubes and/or other medical means, but the family members feel that the suffering has been long and hard and that the parent would have changed his or her mind at this point, what do they do? If the parent left a living will stating that no feeding tubes or other measures be used to prolong life during this stage, but the adult children disagree with that stance, do they have a right to override the parent's stated wish?
What about the doctor's input? Many people complain that they've never been asked about tube feeding, but they walk into a hospital room and find feeding tubes already in place. Others say that they feel the doctor is trying to talk them out of tube feeding, when they really need to think about the issue or definitely want to try it.
Apparently, where we live also plays into the decision. Joan Teno, professor of community health at Brown University, has documented a striking variation in feeding tube insertion rates depending on the state where the patient lived.
Supported by funding provided by the National Institute on Aging, Teno led a group of researchers from Brown University, the Hebrew Senior Life Institute for Aging Research in Massachusetts, and the University of Texas Southwestern Medical Center in "asking people to describe the communication they had with physicians surrounding whether to insert a feeding tube for their loved ones."
Teno's team conducted a study of intubation rates of people with advanced Alzheimer's disease based on the states with the very high rates of intubation of people with advanced Alzheimer's disease (Texas, Alabama, and Florida) and with very low rates of intubation of people with advanced Alzheimer's (Massachusetts and Minnesota). The study was reported on in an article on the Brown University website.
The article reporting on the study is titled Families need information on feeding tubes for elderly dementia patients. The full results can be found in a May 13, 2011 print issue of Journal of the American Geriatrics Society.
The study authors want to see people educated about tube feeding pros and cons so that informed decisions can be made. Their main concern is to "improve decision making so that the decision to insert a feeding tube is based on a process that elicits and respects patient's wishes."
While a decisions such this will never be easy or comfortable when families are considering the needs of a loved one, education is vital. If a loved one is seriously ill, a discussion with the doctor and other medical people should be started as soon as possible. Discussing the issue with a medical ethics professional can also help you sort things out. Your local hospital should be able to connect you with their medical ethicist or give you names of people to contact. Also, of course, your spiritual leader and/or the spiritual leader of your loved one may be helpful as you go through this difficult process.
People should state their end-of-life wishes in living wills, and talk with family members directly about their beliefs while they are able to make informed decisions. These written directions and informal discussions can then be used to guide the family through difficult and emotional times.
A living will can never cover every consideration that could arise medically, and people can and do change their minds, but at least the family members have a good handle on the general attitude of their loved one. Then, whether family members see fit to agree with or override the living will, they will be making the decision based on education, spiritual convictions, specific information from their loved one, and love.