Ending Hand Feeding of Patients With Advanced Cognitive Decline: What Is “Doing the Right Thing”?

In 1994, David Eddy, MD, PhD, published a widely read personal narrative describing his mother’s request to end her life peacefully.¹ First published in the Journal of the American Medical Association, and later reprinted in the New York Times, the story prompted significant public discussion. Eddy described how his mother had reached an informed, voluntary conclusion that it was time for her life to end. She had suffered through a number of acute illnesses and chronically debilitating conditions and had come to her own conclusion that, as her son recounted her saying, “My ‘quality of life’—isn’t that what you call it?—has dropped below zero.” Eventually, fully understanding the consequences of her decision and with the support of her son and primary care physician, Mrs. Eddy voluntarily stopped eating and drinking (VSED) to hasten her death. She died comfortably at home, 6 days after enjoying a last bit of chocolate, then taking nothing more by mouth.

In 2000, a consensus panel of the American College of Physicians and American Society of Internal Medicine (ACP-ASIM) described the legal and moral precedents for supporting a patient who chooses VSED as a “last resort” response to intractable end-of-life suffering.² The ACP-ASIM panel concluded that the presence of full patient capacity for decision-making and informed consent was an essential “cornerstone” of clinical guidelines for considering VSED as an option. A second cornerstone was confirming the presence of severe suffering that could not be relieved by other available means. In addition, the panel suggested that if a suffering person was considering VSED, but was not imminently dying, then clinical assessments should always include second opinions from experts in mental health, ethics, and palliative care.

In their brief narrative case description, Singer and Clary outline the decision-making process to stop hand feeding of their patient Jane, with the intent of allowing her to die—a patient scenario that has both similarities and important differences with Mrs. Eddy’s choice of VSED. Both women were advanced in age and suffered from significant physical debility. Like Mrs. Eddy, Jane suffered from the effects of irreversible chronic illness, punctuated by acute events that added to her emotional and physical distress. The differences between these two accounts lay in each woman’s capacity for decision-making and informed consent, as well as the setting in which they died. Mrs. Eddy had long discussions with her personal physician, family, and friends to make a fully informed decision regarding VSED—the first cornerstone of the VSED clinical guidelines—and remained in her own home until her death. Jane, on the other hand, had previously verbalized wishes to her family about the cessation of oral intake, but she was not able to be an active participant in the decision to stop the hand-feeding assistance of food and fluids. Compared with Mrs. Eddy’s final days at home, Jane was living in a nursing home where the staff were “educated about the process” of the decision and reassured that leaving food in Jane’s room but not helping her eat as they had in the past was “doing the right thing.”

A search of the medical literature suggests that the account of Jane may be the first published description of a decision to hasten death by the cessation of assisted hand feeding and oral hydration in a patient with the following circumstances: living in a long-term care facility; still responsive and presumably able to swallow without significant dysphagia; not imminently dying; and not able to participate in an informed decision. The authors describe a carefully considered, detailed process of family members documenting their recollection of Jane’s specific wishes about oral feeding, consultation with a palliative medicine specialist, and a review and ruling by a probate judge.

Jane’s case suggests important questions regarding the decision to end the hand feeding of older patients with advanced cognitive decline. For a person in Jane’s circumstance, what constitutes a sufficiently rigorous test of the substituted judgment of family members to end hand feeding? Should “the presence of severe suffering that cannot be relieved by other available means,” which is a cornerstone guideline for VSED,be a necessary finding before ordering cessation of hand feeding? If so, how should “severe suffering” be determined in a patient with advanced cognitive decline? Who should provide an ethical review of all aspects of the decision from outside the circle of family, personal physician, and facility staff? When a patient’s “home” is in a long-term care facility, what role, if any, should nurses and facility staff caring for the patient play in the decision and process of the cessation of hand feeding? What are the risks of moral distress for nursing home staff who feel they must comply with doctors’ orders to end hand feeding, but disagree with the decision? These and other questions are worthy of the kind of discussion and debate sparked by Dr. Eddy’s article 18 years ago, and suggest the need for thoughtfully constructed guidelines, similar to those published for VSED, that address the moral, ethical, and clinical aspects of the cessation of hand feeding for patients like Jane. 

Dr. Smucker reports no relevant financial relationships

References

1. Eddy DM. A piece of my mind. A conversation with my mother. JAMA. 1994;272(3):179-181.

2. Quill TE, Byock IR; ACP-ASIM End-of-Life Care Consensus Panel. Responding to intractable terminal suffering: the role of terminal sedation and voluntary refusal of food and fluids [published correction appears in Ann Intern Med. 2000;132(12):1011]. Ann Intern Med. 2000;132(5):408-414.