Food, Caring, and Cancer: Understanding Caregiver Distress about Feeding

His wife was pleading tearfully with us. “Please, if you just let me feed him, he’ll get strong enough for chemo.” The patient’s three adult children echoed their mother’s plea.

This is not an uncommon scenario when I am called to facilitate a discussion between the medical team and the family of a patient with terminal end-stage cancer.

One thing I wish were better explained to families of patients with terminal end-stage cancer is that food and water will harm, not help, their loved one.

It is extremely hard to grasp that feeding your loved one will harm them. It’s even harder to watch them waste away while the medical staff insists you not feed or hydrate them.

Preparing food for and feeding others are intimately tied to caring and loving. The connection is so basic, it’s true for many non-human animals. In many cultures, the conceptual and moral connections between feeding and caring are so tightly intertwined that the two are almost identical. How could it be that feeding my loved one is not good care and undermines their well-being? For families of patients that belong to such cultures, the doctor’s injunction not to feed is unintelligible.

In end stage cancer, four things generally co-occur in the body.

  1. Through a variety of mechanisms, cancer cells outcompete healthy cells for nutrients. Providing nutrition to a late-stage cancer patient is akin to feeding the cancer. All the nutrition will go to the cancer cells, and they will replicate even faster relative to the healthy cells.
  2. The body enters progressive organ failure. This implies that the digestive systems will no longer be able to metabolize nutrition. It will just sit in the body causing painful bloating and–possibly worse–sepsis. The patient’s remaining time will be shorter than it otherwise would have been. They will also have suffered more than if they had not eaten.
  3. Fluid from the blood accumulates within body cavities, intestinal areas, or areas of the body that normally contain little fluid. This is called ‘third spacing.’ When the kidneys start to fail, fluid builds up in the body causing significant discomfort and fluid enters the lungs rendering breathing difficult.
  4. Most importantly, perhaps, is the fact that end-stage cancer patients do not feel hungry. So, while it’s natural to be concerned that a loved one is suffering from hunger, they in fact are not. Regarding thirst, applying a moist sponge to the lips and tongue is generally sufficient to alleviate any discomfort.

For these reasons, medical teams do not feed end-stage cancer patients. To do so would be to violate the duty of nonmaleficence (“Above all, do no harm”).

Asking families of patients to understand what is so counterintuitive to them under highly emotional conditions predictably leads to their hearing but not processing the information.

The solution is that, at an earlier point in the disease trajectory, physicians should explain to patients and families what dying will be like. People make better decisions and are better able to process information when they are not in a heighted state of distress and have time to deliberate.

Doctors and patients may understandably be reluctant to have these conversations earlier for several reasons: 1. It’s uncomfortable to directly acknowledge death—especially when it isn’t immanent. 2. It may undermine the hope from which patients and families draw.

Regarding the first, as other authors have noted (See: Gawande, Dungdale), our unfamiliarity and therefore extreme discomfort with dying is a recent cultural phenomenon. For most of human history, family members would die at home. From an early age, people would have witnessed death in their own homes. This is not to say they didn’t think is was tragic. But rather it wasn’t taboo, and familiarity meant people had the opportunity to develop the emotional resources for witnessing death and dying. Now, medicalized death means dying out of sight in hospitals and, more recently, hospices.

Death and dying are intrinsic parts of life and there are many good reasons for not concealing it from ourselves. I won’t cover them all but, as the Stoics noted long ago, a regular awareness of our mortality motivates us to attend to what is most important in life rather than to be distracted by ends and activities of transitory value.

Regarding the effects on hope, there’s a large literature on the nature and value of hope. Most people will agree that hope that is untethered from what is possible is unhealthy. It can lead us to live in ways that we wouldn’t have had we better understood/internalized the relative probabilities of our possible futures. This is not to say we ought never to hope. Only to say that healthy hope, if there is such a thing, must have some attachment to the world and probability. To live otherwise is to live in a delusion.

In short, we want people to make important life-regarding decisions that are in accordance with their deepest values. Doing so depends on their having realistic expectations about what is possible. For this reason, explaining to cancer patients and their families, earlier in the process, the likely trajectory of their prognosis is good. It allows patients and families to process what things will be like and to plan to live according to their deepest values.

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