The Need for Informed Consent for Denial of Artificial Hydration in Hospice and Palliative Medicine

For more than 30 years, the medical specialty of Hospice and Palliative Medicine (HPM) and end-of-life experts—including biomedical ethicists, clinicians, and clinical researchers—have maintained that dying without artificial hydration is more comfortable than having dehydration relieved by medically-assisted fluid administration. ^{1 -3} Yet, the Cochrane Review identified only 6 Clinical Research Trials that studied the question. ⁴ All studies were fatally flawed either in their design or by falling short of the number of subjects to adequately power a conclusion. The policy of withholding supplemental hydration from HPM patients, then, is not based on evidence, but it persists and is taken as the standard of care. Why?

In part, it is because of the ambiguity of the term “comfort in dying.” HPM has understood providing “comfort for the dying” as reducing suffering by accelerating the loss of consciousness and death. ^5,6 However, that meaning would not apply to the many patients who wish to prolong alertness and quality of life. ⁷ Comfort for those dying patients would entail minimizing homeostatic disruption, ^{8 -10} thus requiring efforts to maintain optimal hydration.

HPM patients are only a subset of dying patients. There are others who will not go into hospice because of circumstance or ideological disagreement. ¹¹ Even those patients who do enroll, not all want to expedite unconsciousness and death. ¹² The principles of autonomy and beneficence would require that if patients want to maximize their time and alertness, then hydration will need to be monitored and supplemental fluids made available.

I would think that HPM must ask about patient and family preferences rather than dictate by limiting services—limitations that are usually unknown to patients until the patients are too weak and the family is too distraught to find alternative care. HPM needs to give adequate informed consent and accurate information to patients, families, and the public about HPM goals and routine practices. If these do not converge with the wishes of patients and family members, HPM practice should change accordingly and supplemental fluids should be made available

The ethical dimensions involved and principle of patient autonomy and participation in choosing a mode of dying demand that the routine practice of fluid deprivation practiced by HPM be viewed as arbitrary and unscientific and in need of re-evaluation and revision according to patients’ wishes. The dimensions of the nature of the care or the lack thereof need to be part of an adequate informed consent process in approaching life’s end.