LAST SUPPERS

Nourishment at life’s end

BY THOM SCHWARZ, RN
PHOTOGRAPHY BY MEREDITH HEUER

Those dying of natural causes, however, such as cancer, kidney, liver, lung or heart disease, want little sustenance and can tolerate even less as they approach their last days. What I am about to suggest is a hard message to hear, harder to believe and often near impossible to follow. I understand; I have been a registered nurse for 33 years and a hospice nurse for the past four years, caring for countless terminal patients, including my own parents. Limit and finally withhold food and drink from a loved one in their last days and hours? You must be kidding, you think. I’m not.

The problem is that it feels that there is little we can do for the dying, and so we fall back on the universal offering, food and drink. We think, “If we can just get them to eat one more nutritious, delicious, favorite meal, they’ll rally.” General Ulysses S. Grant had a passion for peaches and felt—much like myself—that its soft, sweet pulp would be just the right thing to eat at the end. Un fortunately, his esophageal cancer caused him excruciating pain when he tried a bite or two, even when he tried to numb his throat with a strong tincture of cocaine. The mere smell of cooking food often has the exact opposite effect we hope for; those we wish to care for become nauseated rather than hungry Persisting, we set a huge meal, all their favorite foods, before them, piping hot and perfectly prepared. Although it’s far more than they can comfortably eat, they feel compelled by the cook’s loving expectations to try, so they smile and start eating. A few bites and they stall. What’s wrong, we ask plaintively? They feel guilty and ill; we feel confused and disappointed. I recall visiting a patient on a Monday morning after his family spent a frustrating weekend watching helplessly as he became increasingly ill by their attempts at culinary consolation and healing. Finally his daughter, fresh from the kitchen preparing bacon and eggs for him, succinctly explained their motives—and the problem. “We feed him because it makes us feel good,” she explained. I feigned poor hearing and asked her to repeat herself in the hope she’d see the light. She didn’t. Few do.

Withholding food and drink makes everyone feel guilty and helpless. Food in itself is not the problem. Rather it is a matter of scale and timing. Succinctly, more is not better. “Only offer what the patient can tolerate, what they want…. Our bodies tell us what’s right,” explains Lynne Eddy, a registered dietician and assistant professor at the Culinary Institute of America in Hyde Park. She admits, however, “that may be easier said than done.” She calls it “‘the Italian mother syndrome’…no disrespect intended. Oversize, overwhelming portions that will somehow miraculously make the patient get better,” but, in fact, put off the patient from eating even further.

Think back to the newborn’s first food; it is simple, easily digested, provided in small servings, delivered when the infant cries out for it— and then some. To follow that metaphor a little further: Consider that your dying loved one is being born into a next life and follow the same rule of thumb, offering easily digested and safely swallowed food in tolerable amounts when it is requested. And don’t ask if he or she is hungry every 15 minutes. They will tell you if and when they feel hungry or thirsty. Don’t be surprised if those cravings comes increasingly less often, as their digestive tract is slowing down, heading toward shutdown. It’s nature’s way.

“If you offer just one thing—a delicious, warm, juicy heirloom tomato, for instance—that might evoke a sensation, a “watermelon memory,” explains Adrienne London, a clinical social worker at Poughkeepsie’s Vassar Brothers Hospital. “You’re not starving or depriving him. A cup of custard is more than enough. It’s different ground rules now. The patient might just want to savor with his eyes. He wants the taste, not the volume.”

Who needs to eat?

I visited my mother frequently during her final days. She longed for a warm cup of coffee. She didn’t want it piping hot as was her usual desire; such a scalding liquid would cause terrible pain in her mouth’s post-chemotherapy state. So I’d dip a straw in the warm cup and hold my thumb over the end to withdraw a few drops. She didn’t want the entire cup, just enough to enjoy the taste and the companionship of sharing. At dawn after one particularly long night by her bedside she instructed me to check the refrigerator for something for me to eat before I began my long drive home. “Carrots,” she said, “I know there are some stewed carrots in there, that’s what you need, carrots, carrots have always kept me healthy!” She smiled with maternal satisfaction while I choked down the bowlful of cold cooked carrots—a last meal of sorts directly from my mother. She taught me a good lesson to take back to all my hospice families: Don’t feed the patient right now, feed yourself! In nursing terms it’s called “caring for the caregiver.” If you don’t take care of yourself you’ll be in no shape to effectively care for anyone else. You may not necessarily fall over from hunger if you miss a meal or two due to constant care-giving responsibilities but you’re likely to become a little hypoglycemic—medical shorthand for being metabolically deprived of easily digestible sugars—and thus more emotionally labile, as well as vulnerable, in a time already fraught with high anxiety and penetrating sadness. So if you want to please the patient, and be the caregiver you intended to be, you, yourself, must eat.

Less is More

There are essentially three options when it comes to food and the dying patient. You can gradually decrease the amount and types of food provided until they are only taking sips of room-temperature water in an effort to provide them with a graduated, easy passage, free of GI distress; you can throw caution to the wind and give the patient whatever he requests and whatever your heart and tradition dictates; or you can feed him more cautiously, in concert with the patient’s hospice and palliative care physician and nurses to prevent and treat the consequences of an “anything goes” diet, a diet dictated by the patient’s whims or memories of favorite foods. The first choice will eventually become not so much an option as a necessity, a scenario that will in time make itself apparent. With less activity, the body’s demand for and ability to digest food diminishes. Once the patient becomes bedbound, the appetite is no longer stimulated. Food simply sits undigested inside. Additionally, many medications squelch appetite or cause nausea, while others cause nearly intractable constipation. Most patients eventually lose the ability to swallow altogether. Patients’ families might consider inserting a gastric feeding tube to nourish and sustain the patient for a little while longer. The ethical, cultural and medical considerations of that option are beyond the scope of this article. In my opinion, “tube feeding” does not fall under the rubric of either “food” or “eating” and while it may sustain life a little longer, it isn’t, what my mother used to call, “real living.” I will leave the debate over insertion of a feeding tube to the lawyers, ethicists and others who don’t provide hands-on, bedside care for days, weeks and months on end.

Some patients may decide to eat any and all foods lovingly laid before them. Their stomach’s reaction to a rasher of bacon or a bowl of ziti will inform them quickly and clearly of the consequences. (By the term “stomach’s reaction” I am including, for the benefit of the feint-of-heart, all the involved anatomy stretching from the lips to the other end of the gastrointestinal tract and the ghastly list of adverse reactions that are elicited when the stomach says “No, thanks.”) At that point they may still opt to eat any and all culinary gifts. They may choose to enjoy one more slice of cheesecake or a last serving of lasagna. To all those brave and hungry souls I heartily say, go for it! —and call me if you need more tolerable dietary suggestions or pharmaceutical interventions.

I will be the last person on Earth to deny anyone his choice of life’s pleasures, of which food (especially, in my opinion, well-prepared pasta) is high on the list. I just want to make sure that the deciders, be they family or patients, are aware of the possible consequences and available remedies. Remember, “remedies” is the operative word but it’s not a promise. Even the miracles of modern medicine, brilliant nursing and the newest, best pill that the pharmaceutical industry can offer might not be able to quell the terrible turbulence of a severely upset stomach or stalled bowels. For instance, senna, taken as pills or a brewed tea, may help relieve opioid-induced constipation, or it may not.

It’s important to keep in mind that withholding some, or even all food is not tantamount to starving the patient. One good meal will not cure the patients’ disease, nor will it forestall the inevitable. In fact, it’s likely to make their limited time less enjoyable, to say the least. If patients are hungry and want food or drink, they’ll say so. Pat Bocchinfuso, RN, the director of the Kaplan House hospice residence in Newburgh, says that one of the hardest parts of her job is helping the patient’s families understand “what a patient can or can’t do. Many of them can’t eat ‘three squares’ a day, so we will serve ‘spa portions,’—about half of what you or I would eat. And we let them know, it’s OK not to eat.”

Anticipating the nutritional needs and desires of the dying is a loving instinct, but frequent offers could cause the patient to accept foods that may only make him feel either ill or guilty of refusing your generosity and love. Tell the patient early and clearly: if you want something say so and it will be provided. A clear loss of weight and appearance of general decline is natural, albeit sad. It doesn’t indicate starvation. Think again of the newborn and how quickly pounds and the appearance of robust good health appear in the first days and weeks. Now try to accept the reverse process in anticipation of the patient’s birth into the next life. Accept that the patient is losing weight and that earlier glowing appearance is receding naturally. Your acceptance and understanding is probably hard-sought at best, and impossible for many—including this nurse.

Finally, in regard to dehydration, parched lips are not an indication of the patient’s unspoken desire for or ability to drain a tall, cool drink without adverse consequences. Again, offer patients whatever they’d normally like, be it a cup of tea or a Manhattan. They probably only want a taste, and not the whole Manhattan, Maraschino cherry and all. A teaspoon-size taste will suffice, and they’ll indicate whether more is desirable or possible. Other liquids may be more tolerable.

Rehydration drinks, such as cold Gatorade may quench thirst and temporarily fulfill other metabolic needs. Sucking on a child’s ice pop can be wonderfully soothing. (Join the patient yourself; it’ll become less odd and more companionable for him or her.) Small ice chips can provide relief from thirst as well as a wonderful numbing effect to dry, sore lips and gums.

Patients will eventually stop drinking altogether as they approach the end. If you continue trying to dribble even the tiniest amounts of anything into their mouth at that stage you run the risk of causing them to cough violently—an uncomfortable proposition even for the healthy, but agonizing to the actively dying—or aspirate the liquid into their lungs. Remember, it’s impossible to swallow without closing lips or tongue; if patients can’t do either, they can’t swallow. It’s time to stop. The exceptions are highly concentrated medications that are absorbed directly in the mouth and are made specifically for patients in this condition.

How long exactly can a patient live without food or drink? My next patient will probably best whatever you are told or read online. So far the longest I have witnessed (remember, this is only based on my own personal experience) was a little, old lady who went without for 44 days, and although she was quiescent most of the time she appeared altogether comfortable. I never thought to ask her caregivers about her last supper, but I hope it was delicious.