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Deciding About Artificial Feedings
All the passages below are taken from the book “Final Journeys: a Practical Guide for Bring Care and Comfort at the End of Life” by Maggie Callanan. It was published in 2008.
The first event in life, often only moments after birth, is to put the infant to the mother’s breast to nurse. And so, consciously or subconsciously, food begins to become the symbol of love, nurturing, caring, and concern. It is virtually impossible to name a family or social event where food is not present.
Understanding this, it’s easy to see why the loss of appetite and loss of weight experienced by a dying person are perhaps the most emotional and difficult issues with which families and caregivers struggle. As the family watches the dying person become gaunt, their anxiety level increases. They feel that they are failing as caregivers.
“If I could only get him to eat and put on some weight,” I hear them say, or “The doctors and nurses will think I’m neglecting him,” or “We can’t just let him starve to death, can we?” And so they offer more and more tempting treats to entice the patient to eat.
“How does some chicken Florentine sound?” the caregiver asks. “Okay,” the patient replies, usually just to please the family. Immediately the kitchen goes into a Florentine frenzy, only to have the patient take one bite and reject the rest. The family is crestfallen and devastated, while the patient feels bad for letting them down.
“How about turkey and stuffing?” And on and on it goes.
When so many other pleasures have already been lost, meals and snacks that should represent a shared pleasure are now a source of conflict.
Weight Loss Is Normal
Diminishing appetite and weight loss are nearly universal symptoms of terminal illness. To expect a dying person not to lose weight is as illogical as expecting a woman to sustain a pregnancy and deliver a healthy child without gaining it.
Cancer cells, much like babies, have a greater metabolic rate than their host body. (Metabolic rate measures the pace at which food is broken down into nutrients and then delivered to the hungry and demanding cells.) If a pregnant woman does not take in adequate nutrition, what she does take in will go to the developing baby first, simply because the baby is growing and has a much faster metabolic rate. The mother will get whatever is left over.
It works much the same way with cancer, which is an illness of abnormally rapid cell division and growth. In many advanced cancers—-when the cancer has spread beyond its original borders and invades other tissues or organs—-the tumor has a higher metabolic rate than the rest of the patient’s body, so the nutrition taken in will feed the cancer first and the patient will continue to lose weight.
This is sometimes referred to as “irreversible wasting syndrome.” There are two components that cause this syndrome or process: anorexia and cachexia.
Anorexia is loss of appetite or inability to eat. Food no longer tastes good, or it may even taste bad—-some types of chemotherapy, for instance, make everything taste metallic. Eating may cause discomforts such as pain, bloating, nausea, or vomiting. Or food may simply no longer satisfy. This is different from the anorexia of an eating disorder, which includes emotional and cognitive components. There are a few medications, such as steroids or hormones, that can increase appetite temporarily, and there are many effective medications to relieve nausea and vomiting. But even using these medications does not reverse the weight loss.
Cachexia is a destructive metabolic process that breaks down normal tissue and is nearly inevitable for patients with advanced cancers. It is caused largely by inflammatory proteins that are released in response to the underlying disease.
Advanced heart and pulmonary diseases, among others, also release these destructive proteins into the body and produce the same irreversible wasting syndrome. This happens regardless of how much nutrition is given to the patient or whether it is delivered normally by eating, through tube feedings, or parenterally.
Many people think that IVs are used to provide nutrition. This is not true. IV fluids, which are delivered through a needle in a vein, are made with the equivalent of a teaspoon of sugar or salt in a liter of sterilized water. Although vitamins and electrolytes such as potassium and sodium can be added to IVs, these fluids do not provide adequate nutrition. IVs are used to combat dehydration, to quickly deliver important medications or electrolytes, or to keep the vein open in case medications need to be delivered rapidly.
Tube feedings consist of liquid nutrients carefully poured down a tube inserted through the nose, down the esophagus, and into the stomach. These tubes are uncomfortable and can erode the membranes of the nostrils and the esophagus over time, so they are considered a temporary intervention only. As helpful as they can be, there is up to a 70 percent chance that some fluid will be aspirated, or washed back up the throat and down into the lungs. This can cause a deadly pneumonia. If long-term tube feedings are determined to be appropriate, the patient usually undergoes surgery to insert the tube directly into the stomach; still, aspiration pneumonia is a risk for this type of tube feeding as well.
The third option, total parenteral nutrition (TPN), is also known as hyperalimentation. A milky-looking sterile solution, not unlike baby formula, is delivered through a catheter (similar to an IV tube) that has been threaded into a major vein, usually in the chest. This nutritional formula also contains vitamins and electrolytes and must be carefully and frequently monitored by blood work to make sure the organs of the body are tolerating it. The catheter runs through a preprogrammed pump that usually delivers the feeding over a twelve-hour period, whether the body is tolerating it or not. Blood sugar tests must also be done regularly to make sure the patient has enough insulin to balance the sugars being given; otherwise the patient is at risk for insulin shock or diabetic coma. Nurses are particularly vigilant to be sure the patient’s body is not being subjected to fluid overload, which can lead to fluids in the lungs and congestive heart failure.
In 1989 the American College of Physicians published a position paper stating its opposition to aggressive nutritional support, such as TPN, in patients with advanced cancers and other terminal illnesses. The statement indicated that it is the duty of the physician to review with the patient and family the lack of benefits and the increased burdens from using TPN: it does not overcome wasting syndrome, and it increases the risk of life-threatening systemic infections. Indeed, it is possible for this intervention, which many people see as lifesaving, to actually cause death.
The Kind Solution
The right and compassionate thing to do in most cases is to recognize that eating should be a source of pleasure rather than sustenance for the dying. Weight loss should not be a major focus; it should be on the NOT FIXABLE list. I typically suggest to the patient: “Eat what you want, when you want it, and as much or as little as you want. If you don’t want to eat, try a little bit, but don’t worry about it if you don’t want to eat more.”
Often, once the family understands what’s really happening and why, they are relieved to give up the role of nutrition police. They continue to have available a good selection of small portions of foods that appeal to the patient. But if the patient refuses to eat, backing off is the compassionate thing to do.
George had a tall, slight build. His wife, Hattie, said he had always looked like a “long drink of water.” He was seventy-three years old and by his own account starting to “slow down a bit.” He had retired from a government job, enjoyed a happy marriage of forty-five years, raised two successful, independent children, and adored his two toddler grandchildren, who lived nearby. All in all, George felt that he had a good life. His family quickly noticed his early signs of weight loss, since George didn’t have anything extra to lose. Surgery had removed the intestinal obstruction caused by a large cancer in his colon, but it left him with a colostomy bag on his side. Sad to say, the cancer had already spread to his liver, and his prognosis was terminal.
His family refused his oncologist’s suggestion to call hospice because Hattie saw that choice as “giving up.”
They sought second, third, and fourth opinions from physicians as highly recommended as their oncologist was. All made the same diagnosis, prognosis, and recommendation. So Hattie and George traveled farther and farther away from their home, seeking an opinion that was more acceptable to them. In the meantime, George became sicker, thinner, weaker, and more exhausted by the efforts involved in driving to see so many doctors.
I visited in response to George’s daughter asking if hospice could “just stop by and tell my folks about your program.” She hoped her mother would change her mind about hospice care.
George told me, “I know I’m dying, and I just want to enjoy my time holding my grandkids and reading to them as long as I can.” With a twinkle in his eye he added, “I’d also love a bowl of crab soup from Captain Jack’s Restaurant.” Then he quickly added, “But if I give up on treatments, I know I’ll be letting my family down.”
Clearly Hattie and George wanted to continue aggressive care, so I promised to keep in touch. They weren’t ready for hospice yet.
The fifth physician they consulted, a hundred miles away, initially said the same thing as all the others. But in response to Hattie’s angry challenge, “You’re not going to just let him starve to death, are you? Look at how thin he is already! Are you refusing to care for him?” this doctor reacted defensively.
“Well, maybe he’d benefit from some TPN,” he suggested reluctantly.
Hattie felt they had found the answer. But George insisted on staying at home rather than go to a nursing home to receive this treatment. “I want to die in my own bed,” he said. Their insurance wouldn’t pay for twenty-four-hour in-home nursing, so with no other option, Hattie reluctantly took special training to prepare the syringes of vitamins and other additives for the TPN, hook it up, and remove it when it was done. She was overwhelmed by this responsibility and terrified that she would do something wrong and hurt him. Boxes and boxes of solutions, syringes, dressings, and other equipment now took over their dining room. An IV pole with a special pump was needed to ensure that the sterile feeding would flow into George’s body at a monitored rate, so it stood by the bed.
A visiting nurse drew blood twice a week to make sure George was not developing an infection or receiving too much sugar from the TPN. The blood work would also indicate whether or not the additional fluid and nutrition were overloading George’s already weakened kidneys and liver.
George and Hattie’s home was beginning to look and feel like an intensive care unit. And although their insurance covered 80 percent of the cost of the TPN, which was more than $200 a day, the co-pay was becoming a financial burden on top of all the other medical bills. Weeks passed and their debt increased. The grandkids visited every day but were too frightened by the IV pump and other equipment around George to climb on the bed and cuddle with him.
The feeding was to run for twelve hours overnight and stop in the morning, so George could enjoy his day without being tethered to the pump. But during the night the pump kept beeping with alarms, sometimes false, and Hattie had to get out of bed to try to correct the problem. Changing the colostomy bag took time as well. Both she and George were exhausted, and more and more often the feeding got off schedule and ended up running during the day.
Having boisterous toddlers visit now seemed to irritate George or interrupt one of Hattie’s stolen naps. They requested that the grandkids come less often. George developed a thrush infection—-an overgrowth of yeast in his mouth, not uncommon while receiving TPN—-so nothing tasted good to him now. His yearnings for crab soup were a thing of the past.
Meanwhile, George’s abdominal tumor was benefiting from this artificially enriched nutrition. His stomach grew visibly larger each day, like a pregnancy on fast forward, and as it grew, George became more and more uncomfortable. His increasing girth made moving around in the bed difficult, and he started developing bedsores. His pain increased, and the resulting escalation in the use of medications for comfort burdened his failing liver. He became confused and sedated, and Hattie was afraid to let him out of her sight.
Her fear was reinforced when one day, while she was dozing in the recliner in George’s room, he climbed out of bed and fell. He was badly scraped and bruised, but fortunately he didn’t break any bones.
Hattie was now afraid to sleep at all—-and as exhausted as she was, her own previously controlled symptoms of congestive heart failure started to recur. Her ankles became swollen with fluid and she was bothered by shortness of breath. She refused to leave George long enough to see her doctor and get the tests he would have requested. The family worried that George’s illness would kill both George and Hattie. George was often too confused to recognize the grandkids when they did come. This distressed and bewildered the children, and they were afraid to go into his room at all.
At this point the family finally agreed to call hospice. I was his nurse and was immediately struck by where the energy in the house was focused. It wasn’t on George—-it was on the TPN. I sat with the family and asked them to describe the decisions that had brought them to this point. What did each of them think the doctor had meant when he said that maybe George would benefit from the TPN?
Hattie thought the doctor had meant George would gain weight and get stronger again, so that he could tolerate more treatments that might lead to a cure.
The daughter thought he’d meant that George would gain weight and get strong enough to be able to enjoy trips with the grandchildren again, even though he would eventually die of the cancer.
The son felt the doctor had been implying that it was morally, ethically, and medically wrong to let a person “starve to death.” But he was now concerned about the toll the TPN was taking on the entire family, especially his mother.
George was too confused to participate in this discussion.
I called the doctor to explain the situation. He had not seen George for six weeks, since George was too sick and weak to make the two-hour trip. The doctor said, “His disease was very advanced when I last saw him. I never intended for the family to think that the TPN would cure him or significantly improve his condition. Maybe it would just slow the weight loss and buy a little time.”
He continued, “It probably would have been a good idea to have a specific time frame in mind. For example, try TPN for a month, to see if George gained weight and was able to function better. If that didn’t happen, we’d discontinue the TPN. Since he hasn’t gained weight and is barely functional at this point, we should stop the TPN. It’s not benefiting him at all, he’s at high risk for infection and aspiration, and in fact it seems to be a burden for all of them.”
When I repeated this conversation to the family, Hattie was outraged. “It’s George’s lifeline! It’s the only thing that’s keeping him alive! How can we possibly stop it now? If we did, I’d feel like we killed him.” Her understanding of George’s illness had become so distorted that she now believed his death would be caused by starvation rather than by the organ failure brought on by his terminal cancer.
My attempts to gently reinforce reality failed and only caused Hattie more anxiety. She demanded that the TPN be continued, even though the insurance would no longer cover it since there was no proof that it was helping George. Now the family was responsible for the full cost of more than $200 per day.
Ten days later, Hattie was taken off in an ambulance and hospitalized for congestive heart failure. While she was in the hospital, George rapidly deteriorated and died, still tethered to the TPN. After all her hard work, Hattie never got to say goodbye. And although it hadn’t been a lot to ask, George had never again held his grandchildren or had his bowl of crab soup.
Did the TPN extend George’s life? Perhaps for a few days. Were his final months spent the way he would have chosen? Not according to what he had told his daughter and me. When George talked of dying at home in his own bed, I doubt he had intended for his entire home and family to be so stressed and burdened by the treatments. One day of TPN melted into another as they all waited for the nutrition to kick in. It never happened, and George ran out of tomorrows.
Quality versus Quantity, Benefits versus Burdens
It is important to acknowledge the difference between quality of life and quantity of life. It’s equally important to understand the benefits and burdens of the decisions you make regarding treatment. Ask specific questions. Ask more than one person. As caring and knowledgeable as they may be, physicians are rarely involved in giving the treatments they order, and they seldom observe how they are handled in the home. Instead, ask home care nurses, such as those from the Visiting Nurse Service, who have the most hands-on experience when it comes to such issues and questions. Also understand that if you choose an aggressive treatment such as TPN, some hospice programs will not accept you, as such treatments are viewed as futile.
And remember, no decision is set in stone. You can try a treatment and change your mind if the burden outweighs the benefit. Try to be clear about your goals, and regularly assess whether they’re being achieved. Above all, remember that the last few weeks of life can be a wonderful time of memory making for both patient and family. That may be the nourishment that’s needed most by everyone.
THE BOTTOM LINE
To expect a person to die of a terminal illness without losing weight is as illogical as expecting a woman to deliver a healthy baby without gaining weight. [81-91]
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