Time is flying by and the number of difficult tube feeding cases I am seeing continues to grow. Since August 2010 my stomach has been in knots over Mr. C, an 88 year old patient with end-stage dementia. He was not eating and his family doctor recommended placing a PEG tube. A surgeon agreed to do the minor surgery even though the patient was severely demented and in poor physical condition. The family doctor insisted that the man should not recieve food via the PEG, only fluids and medications. To me this seemed like the ultimate poor medical decision; his intake was so poor that he would surely pass away in a few weeks from starvation. When I spoke with the family and asked them to consider feeding through the tube, his wife said "I'll do whatever the doctor wants"-which meant no food via the PEG tube, much to my dismay. So he continued to recieve a pureed diet for three meals daily, even though he was not eating.

Fast forward 6 months. Since the PEG tube was placed in August, his meal intake has been very poor for months. He has recieved enough fluid through the tube to keep him alive but receives virtually no protein, carbohydrate, fat, vitamins, or minerals. Mr. C has essentially been starving to death. Now, in addition to his mental debility (Alzheimer's Dementia) has has even more severe physical debility because of his poor nutritional status. He lost over 75 pounds. Every time I check on this resident, I am amazed that he has not passed away.

However, on a recent visit to the patient I was amazed to learn that he has begun eating again, often 50-100% of his meal trays. He remains very demented and can do almost nothing for himself. If he continues to eat, he could live on for years to come, although he will remain very debiliated and confused. To me, this case is a shocking illustration of "life at all costs". Yes, Mr. C is still alive, but he cannot speak, feed himself, walk, or recognize his wife and children. Has being given fluid only, no food, through his PEG tube saved the patient's life? Or has it caused him to die a slow, agonizing death and prolong the inevitable?

Summertime

It's summertime...life is a bit more relaxed in my household. But the pace of work life is just as frenetic as always. Patients are admitted to long-term care just as frequently as at any other time of the year. I've had several difficult tube feeding situations in the past month. One that comes to mind is my patient (Mrs. P) who had a stroke at age 80. Before the stroke she was ambulatory, living alone, and driving. She had a PEG placed in the hospital after her stroke and was sent to a rehab center. Unforunately, since her admission, her recovery has not progressed. She has been hospitalized several times and is not tolerating the tube feeding well. Medications have been ordered to help move the feeding through her digestive system. The last time I checked, she was alert but unresponsive, receiving all of her nutrition and hydration from a PEG feeding with very little quality of life. Mrs. P's family is understandably having a difficult time dealing with the suddden change in Mrs. P and her lack of progress. At this point her prognosis is very guarded.

PEG Tube Feeding-When It's Appropriate-When It's Not

It is an honor and a pleasure to see my name in print, in an article for Today's Dietitian magazine titled "PEG Tube Feeding at the End of Life-When It's Appropriate, When It's Not". The article outlines situations where PEG tube feeding is appropriate and those where it might not be indicated based on evidence-based guidelines. It is clear that some patients and/or their surrogates desire tube feeding even if a medical professional does not believe that it is in the patient's best interests. This article brings some clarity to this topic for medical practitioners. As the article states, it is the job of medical professionals to help patients undertand the risk/benefit of tube feeding and assist them in making the best decision for their loved-one. In some cases, families will make a choice that the medical professional doesn't agree with.

The topic of end-of-life nutrition care is not going to go away. In fact, I predict that over the next few years there will be a major focus on the risk/benefit/costs of all types of end-of-life medical interventions. The discourse between those who believe in life at all costs and those who believe in fewer medical interventions will most likely become louder and more contentious. Stay tuned!

Pondering the body's appetite controls

Why is it that many people who are very elderly and/or near death have no appetite? Some believe that the body's hormones and metabolism change dramatically with chronic illness and are a cause of a poor intake. Others believe that cogntive decline (inability to know it is time to each, lack of interest in food, etc) are the cause. But after years of working in long-term care with ill and elderly patients, I have come to believe that for many, a lack of appetite is a signal from the patient that they are ready to die. This signal might be a concious effort to stop eating to facilitate death. Or it might be subconcious. But it is very clear that many patients have no interest in food and actually refuse to eat or drink, turning their heads or clenching their teeth when a cup or spoon approaches their mouth.

Time after time I have witnessed well-meaning caregivers and family members of eldery and terminally ill patients try to encourage people to eat. Sometimes this encouragement turns to futile attempts to save a life. Upon occasion I have seen family members force food into a patient's mouth or trick a patient into eating, desperate to prevent their loved one from starving to death.

We (medical professionals, caregivers, and family members) need to begin to listen to signals and respect the rights of our patients and loved ones to refuse nourishment. Force-force feeding is disrespectful and could result in choking.

We need to be less afraid to let our elderly and terminally ill-loved ones choose not to eat and drink, and accept it as part of a natural part of the end of life.

Who chooses: the patient or her daughter?

Presently I am dealing with an issue of a fairly young woman (around 50) with end-stage MS who is not eating or drinking much. She can communicate using yes and no answers and has clearly told the staff at her nursing facility she does not want to be tube fed. However, her adult daughter is her guardian and she wants to save her mom at all costs. The patient emphatically does not want tube feeding but her daughter is planning to have a tube placed against her mother's wishes. The patient's daughter says it is her right as her mother's legal guardian to make that decision.

As a medical professional looking clinically at the situation, it is upsetting that this daughter is over-riding her mother's wishes. However, as a daughter, I understand her reluctance to let nature take its course, despite the fact that she has a terminal diagnosis.

This case raises lots of interesting "food for thought" for doctors, dietitians, nurses, and any of us who will face this type of decision at some point in their life.

The subject of end-of-life decisions is not comfortable for many people. Business Week just published an interesting commentary on the topic from the wife of a fairly young man named Terence Foley who died of cancer at age 67. Read the story of "Lessons Learned from a $618,616 Death at http://www.businessweek.com/mediacenter/podcasts/cover_stories/covercast_03_04_10.htm. In this difficult and revealing article, the author asks herself if the multiple attempts at saving her husband's life were worth it, and seems to conclude that they absolutely were, in costs both financial and emotional.

After several years of fighting cancer in every way possible, Mr. Foley was eventually transferred to hospice where he died as comfortable a death possible given the circumstances. Despite his illness, his last years were very full and he shard many important experiences with his family before he died.

If you have a loved one suffering from a debiliatating chronic disease, you should read this article.

One of the biggest concerns expressed by families who are considering tube feeding is "I can't stand the thought of letting grandma starve to death because it will be painful". No one wants to make a heart-wrenching decision to withold food or fluid from a dying patient. However, there are times when this decision is in the best interests of a patient. An understanding of the physiological process of dying may help ease the burden of this decision. Studies indicate that dying patients who stop eating experience very little hunger. When food and fluid intake is poor, dehydration usually occurs before starvation. Dehydration eventually results in metabolic changes are said to produce a sedative effect on the brain just before death. Withholding fluids can reduce saliva, decrease the need to urinate, and reduce cough from congestion in the lungs, all of which can make a patient more comfortable. There may also be fewer requests for pain medication in a patient who is not recieving food and fluids.

Based on the evidence available, withholding food and fluids is not painful or uncomfortable. In fact, dehydration may actually increase comfort and minimize pain during the dying process.

Can tube feeding save grandma's life?

Experts generally agree that tube feeding is a good idea in certain medical situations. However, when patients have advanced dementia, studies have not shown that tube feeding improves the length of life or quality of life. So tube feeding, while it may seem like a good solution, may not make grandma live longer. In some cases, tube feeding can result in negative consequences that can actually result in harm...things like infection around the tube site or intolerance of feeding that causes nausea, vomiting, or diarhea. Patients that are tube fed may also be more likely to get aspiration pneumonia, a condition that is a result of food or fluids going into the lungs rather than down the esophagus and into the stomach. Tube feeding is not just considered nutrition, it is considered a medical intervention, like other medical interventions such as dialysis or use of a ventilator for breathing. Placment of a feeding tube requires minor surgery and transportation to a hospital or clinic, which can be difficult and traumatic for some elderly and/or confused patients. These are all issues that should be considered when a family is making a decision "to feed or not to feed".

Should we pull the plug on Grandma?

I am happy to be back to blogging and hope to post more frequently in the weeks and months to come.

Recently our county has been having a national debate on health care reform. During this conversation, pundits and politicians alike have accused the government of wanting to establish "death panels" that will make decisions about "pulling the plug on grandma" to save costs. Obviously this is a complex and difficult issue that has been oversimpified in the media. There are many, many facets to this conversation and I plan to address several of them in the weeks to come. However, when I look at how families make end-of-life decisions, my first question it: Is saving grandma in her best interests? Or do you want to save grandma for your sake, not hers?

In my experience, many elderly and ill patients are tired and uncomfortable and are ready to pass on "to a better place". Sometimes family members (who are usually health care power of attorney) believe that everything should be done to prevent grandma's death and save her life, despite what grandma says. Lifesaving interventions might include hospitalization, medications, IV fluids, or tube feeding(which usually requires minor surgery). I contend that in many cases when family members make decisions to safe a life, they are making them for selfish reasons, not for the sake of grandma. Perhaps they cannot imagine life without grandma. Maybe they cannot handle the guilt of making the decision not to save grandma's life. Whatever the reason, I can't help but wonder whether letting grandma die a peaceful and natural death is more humane than making her endure uncomfortable or painful procedures to sustain her life for a few days, weeks, or months. Which brings back the question..why are we saving grandma? Is saving grandma in her best interests? Or do you want to save grandma for your sake, not hers?

Agonizing decisions

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.