Welcome to my first blogging experience! As a registered dietitian who works in long-term care, I see the difficulties that patients and their families who are suffering from dementia face.
Having an elderly loved one suffering from Alzheimer's disease or other forms of dementia can be difficult in many ways. Watching your loved-one deteriorate both physically and mentally is part of the pain of advancing dementia. When a patient begins becoming confused or disoriented (often refered to as cognitive decline), s(he) may become too confused to focus on eating, refuse to eat, or forget to eat. Physical decline such as swallowing problems or being unable to bring an eating utensil to the mouth can also affect food intake. Among the agonizing decisions family members must make is whether or not to tube feed a dementia patient who is not eating.
I am looking for your stories, and will share mine, in an attempt to ignite a conversation about the difficult issues related to eating issues and end-of-life decisions related to artifical nutrition and hydration. Please add your comments, and I will check back now and again to see where the conversation goes.
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About Me
- Liz Friedrich
- Salisbury, North Carolina, United States
- I am a Registered Dietitian with 14 years of experience working in long-term care with dying patients and their families. I am also a daughter, mother, wife, and compassionate person who seeks to understand the complexities of feeding (or not feeding) those who are near the end of their life.
1 comment:
I am an RD/LD who works for a medical center. I primarily work for their Home Care and Hospice areas but I do also work in their acute Hospital areas.
Not only have I dealt with this issue on a professional level but I have also experienced it on a personal level. I had to discuss this very thing with my grandmother 2 years ago when my grandfather (who had progressed dementia) began to refuse oral feedings and the option of a feeding tube was given to my grandma. I was more personally invested in this decision but tried not to persuade my grandma to one side or the other. I simply laid out the facts and the research evidence to her and let her know that I would support her no matter what decision she made (my grandpa had not made his wishes known prior to becoming ill).
My professional experience, being that I am in a somewhat unique position, has allowed me the opportunity to counsel patients and families on artifical nutrition vs non-artifical nutrition. Typically by the time I have a patient admitted to hospice services this discussion has already taken place but I do continue to have discussions with patients and families about their goals, wishes, and knowledge regarding tube feedings at this stage. The most common patients I see with tube feedings are those who have already made the choice to have it placed prior to hospice services. I have had dementia patients on tube feedings although more commonly my tube feeding patients have diagnoses such as Parkinson's or some form of head/neck cancer.
When I have discussed the possibility of placing a tube feeding or pateints/families come to me with questions, I first begin with explaining what artifical feedings are and how they work and what the different kinds are. Then if the patient/family is not too overwhelmed yet or has further questions I will go more into the ethics of tube feeding as sited in professional resources. I often pose the question: What will you do if you place a tube feeding in the hopes for rehabilitation and the transition back to oral feedings, but that is not possible and the patient must remain on tube feedings indefinitely? I also relay to them that most people have a much harder time removing a feeding tube once it's been placed than just letting nature take it's course. Often times in Parkinson's and head/neck cancer patients, they still have a sense of hunger and their digestive tract is working pretty well at the beginning. It's not until later when the disease process has progressed or metastisised that there becomes an issue with the tube feeding.
I do not find it hard to separate my personal beliefs from my professional knowledge when discussing tube feedings. I strongly feel that it is a personal descision that must be made by the patient. It becomes more difficult when it involves a dementia patient that cannot verbalize their wishes and may or may not have made their wishes known previously.
There is a lot of misinformation out there or misunderstanding among the general population that their loved one is going to suffer and starve to death. This is further complicated if their loved one is not cognitively or mentally aware enough to express their beliefs or feelings. One of my roles is to provide education to patients and families in just such a situation.
Bethany Morris, RD, LD
Hospice / Home Care Dietitian
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