Science, Hospice, and Terminal Dehydration

Hospice care as a science is a relatively new discipline. Literary references to hospice-type care can be found as far back as Shakespeare (see "Henry V" and the care Falstaff received at end-of-life from his cohort at the inn), but "palliative" care wasn't referred to as such. Symptom control was merely the standard-of-care in times before modern medicine brought an expectation of cure or modification of the natural history of disease. What else could the early practitioner offer in most cases, but palliation of symptoms?

Bringing science to the care of patients at end-of-life has been a long process, and one that is still in its infancy. This lack of evidence-based data encourages the "art" of palliative medicine, but makes decision making more difficult, especially to the new or part-time practitioner. An artful practitioner is a joy to behold, and his/her patients are lucky indeed, but transmitting "art" to the next generation of practitioners is harder and less efficient than transmitting evidence-based decision making.
For example, there are a few studies examining the use of nebulized morphine for terminal dyspnea. The most positive studies are unblinded, observational studies1, while the most negative study is a blinded, placebo controlled series in a non-hospice population2. Physiologic studies were done on cows3. From this scattered evidence, the practitioner must somehow make a clinical decision when and if to use nebulized opioids in the setting of terminal dyspnea.
The question of dehydration in the terminally ill is a similar, although possibly better studied, minefield. Even the most accomplished researchers in the field conclude "the data reported to date are insufficient to allow a final conclusion on the benefit or harm of dehydration in terminally ill patients."4 Research has indicated that fluid depletion in dying patients is at least relatively benign in symptoms, and that comfort levels can be maintained even when dehydration is such that serum sodium levels become deranged.5 However, Fainsinger showed that delirium could be significantly decreased at end-of-life if severe dehydration was avoided with a small amount (approximately1200cc/day) of administered fluids.4
Whenever we wish to try a new intervention, we involve the patient and/or the family in the decision-making process. When we, as deliverers of health care, are not certain what the best course of treatment is, we often defer the decision to the patient or family, assessing their comfort level with one direction versus another (this can also be referred to as "dumping it in their laps"). Patient attitudes, level of comfort with the situation, and education will influence the decision; health care workers' attitudes, level of education, and biases in presentation ("you don't want me to give IV fluids, do you?") will also affect the outcome. Knowing what factors are relevant to patients' acceptance or denial of hydration will show us how to better approach the situation when it arises; if a certain identifiable population of patients nearly always refused terminal hydration, then one could spend more time on other interventions and less energy pushing an unacceptable modality.
The article by Morita, et al., in this issue6 takes a step toward defining what factors enter the decision for or against hydration at end-of-life by patients and family. The study is well discussed in the body of the article, but a few points are very interesting but were not truly part of the study.
First, it is most impressive that over 90 percent of family members participated in the decision whether to hydrate. Fifty-one percent of patients also participated, the rest were felt to be too delirious. In contrast, one Israeli study showed that only 3 percent of patients and 13 percent of families participated in a similar decision on an oncology ward.7 The average in the United States is probably somewhere in the middle. The level of participation in Japan, if the results can be generalized, is stunning and should be emulated elsewhere.
Also amazing is the statement "...more than half of the care-receivers stated that...artificial fluid therapy might worsen patients' suffering." It is unlikely that in this country, where we usually only feel comfortable when we're "doing something", one could find 51% of health care practitioners that would agree with this enlightened view, much less 51% of the population at large. How the Japanese public seemingly became so familiar with an issue that is foreign to ours is an interesting question. Is it all cultural, and therefore not transferable here, or is there a way that we can educate ourselves and our clients so that they can make more rational decisions about their own fates when we necessarily defer to them for guidance?
Being able to say something like "studies have shown, that in this instance, the majority of patients feel better if we don't give them fluids" works reasonably well in this society. Perhaps this is just another reason to encourage the scientific pursuit of answers to questions posed at end-of-life. If we can use science to further the art of delivering health care, part of which is helping patients and families make decisions with a minimum of stress, then we have at least achieved symmetry. At best, we will decrease suffering, which is the reason our discipline exists.
News on the Physician Assisted Suicide Front

The recent conviction of Jack Kevorkian, MD, a former Michigan pathologist of second-degree murder in the death of Thomas Youk, a 52 year old patient suffering from Amyotrophic Lateral Sclerosis (ALS, or Lou Gehrig's Disease) was a moment of vindication for many in the hospice field. Many who have heard him speak, seen his macabre artwork, or watched him hook up Mr. Youk (on television) to an EKG machine and fiddle interminably with the IV needle prior to sedation and a lethal injection of potassium chloride, feel that the murder conviction was justified and that it validates the anti-Kevorkian stance that is prevalent in hospice circles. However, it will be a long time before the champagne should be broken out.

The conviction for murder is not the end of this controversy. The fact of the matter is that some of Kevorkian's ALS patients were formerly (or concurrently!) hospice patients. They had had the care that we're so proud of delivering and chose the ministrations of Dr Jack anyway. It is true that studies have indicated that treatment of physical symptoms8 and psychological distress9,10 will decrease the risk of terminal patients desiring suicide. It is also true that controlling the symptoms of ALS is extremely difficult, if not impossible, compared to cancer pain, terminal dyspnea, or other common problems, and that the psychological distress of losing control of the body is intense. We do not have a great track record when it comes to the palliative care of ALS patients, and research is required to help us help all patients to live life with dignity, and die with that dignity intact. If we are going to compete, we must win because we offer a superior service, not just lip service.
There are many serious thinkers on both sides of the assisted suicide debate. Even if Jack Kevorkian leaves the scene (after becoming a martyr to the cause, no doubt) this issue will not just vanish. Dialog is essential, and the hospice point-of-view must be furthered in the public debate. We will be in competition with others with ideas we disagree with, and the only way to win in the end is to be right. We must show the public and medical professionals exactly how it is that we're right, and continue to do so until the end of time. Truly, we should not rest until the words of Dame Cicely Saunders trip off the tongues of our friends and neighbors as easily as the football scores from Monday night. Lest we fall into complacency with this latest "victory" or decide the status quo is sufficient for our survival, it is wise to remember* the words of Winston Churchill: "...the goal is not to survive, but to prevail."