Pragmatics: To eliminate discomfort while refusing food and fluid ...
Is Voluntary Refusal of Food and Fluid uncomfortable?
No, it is not. Voluntarily Refusing Food and Fluid is NOT uncomfortable. How do we know? Because those who were alert when they started and could express their feelings during the process – like Mrs. Virginia Eddy and “Mary Evelyn,” above – told us. Second best are the reports from empathic family members who observed their loved ones’ peacefulness as they went through the process, especially when compared to their previous state of struggling and suffering.
Quite the opposite, there can be a definite increase in comfort when fluid is restricted. The reasons are physiologically sound. Joanne Lynn, pointed out in her 1999 book, less fluid in the lungs has the benefit of making it easier to breathe; less fluid in the throat… less need for suctioning; less pressure in general… less pain; and less frequent urination… lower risk of skin breakdown and bedsores. Also, with less liquid in the circulatory system, the heart does not have to pump as hard.
From the psychological point of view, patients often find a new profound sense of peace – probably because they have stopped fighting as they attained acceptance. Few patients report difficulty with maintaining their resolve. Those who stopped the process by asking for something to eat or drink rarely did so because of discomfort.
Comfort must be considered in relative terms. Those who have observed patients in the Minimally Conscious State or in the end-stage of dementia often wonder how much these individuals are actually suffering. At best they are confused; at worst, they are burdened by perpetual fear and horror. Not able to understand what is happening to them, many need physical restraints, the use of which increases burning pain from bedsores. Patients also experience sharp pain from the insertions of tubes. They may even dread such ordinary care as turning during a sponge bath. If they have a source of pain, brain-damaged patients cannot tell us where. Our observations are limited to their primitive way of expressing frustration; for example, fighting nursing assistants as they attempt to spoon-feed them.
For those undergoing Voluntary Refusal of Food and Fluid, physicians can provide comfort care (also called palliative care) to reduce patients’ discomfort until they slip into a deep sleep, which progresses to a light and then deep coma. At that point, there is finally no more suffering. Physicians can reduce the sensation of mild hunger and thirst during the first day or so by prescribing tranquilizers and pain relievers, as detailed in the next i-FAQ. But often, small doses suffice because patients report a mild euphoria or a pleasant lightheadedness. These sensations and the depressed appetite are probably due to ketones – the breakdown products of metabolism when nutrition is withdrawn. Nature’s way to ease end-of-life discomfort may explain why dying patients may have less discomfort than we might, after missing only a couple of meals.
Non-medical treatment is very important. Mouth care is critical for comfort. Glycerin swabs, ice chips, and lemon drops should be applied to the mouth and lips to reduce the discomfort of thirst. The nasal passages should be sprayed. Drops should be placed in the eyes. Finally, soothing music has much to offer. Live harp music reduces pain and discomfort significantly, the proof of which can be measured by physiological parameters. [Terman, 1999]. Some organizations of harp therapists offer their services on a sliding scale according to the family’s ability to pay. As an alternative, even a stereo that plays harp or another type of soothing music may help.
If you would like further detail and documentation on dehydration, continue listening or reading...
Mouth breathing and opioids may be more often the cause of severe thirst in terminally ill cancer patients than “biochemical dehydration,” defined by increased blood levels of urea, creatinine, and sodium, according to Morita, 2001. Dehydration is often suspected as the cause of delirium, and with good reason. One study showed clinical improvement if sugar and salt in water were added to an anti-psychotic drug. In 2000, Cerchietti suggested the anti-psychotic drug, haloperidol, 2.5 mg every 4 hours. Of those 28% of cancer patients who could express themselves two days before dying, about seven out of eight said they had a dry mouth or felt thirsty. However there was no statistically significant association between their level of hydration and their symptoms of thirst. Hence, the authors concluded, “Artificial hydration to alleviate these symptoms in the dying patient may, therefore, be futile.” [Ellershaw, 1995.] Also, intravenous therapy in terminal cancer patients during the last two days of life did not improve levels of consciousness. [Waller, 1994.] McCann  followed conscious terminal cancer patients and concluded, “Complaints of thirst and dry mouth were relieved with mouth care and sips of liquids far less than that needed to prevent dehydration.” In other words, local attention to the mouth where people experience thirst is effective, even when the patient is dehydrated and liquids are not restored.
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What medications can effectively relieve discomfort while but require minimal fluid?
We mention specific medications for sedation and pain relief since some doctors may not be familiar with prescribing them for patients who also wish to minimize fluids.
To reduce anxiety and insomnia, Klonopin/Clonazepam is available in an oral wafer form that quickly dissolves on or under the tongue. If the mouth is dry, add a small ice chip. This Valium-type benzodiazepine provides sedation but even overdoses rarely depress the drive to breathe. Available in doses of 0.25 to 2 mg, it can be given every 2 to 4 hours until calmness is achieved. Since it has a long half-life, a high dose may make it difficult for patients to arouse, if for example, relatives arrive to whom they have not yet said good-bye. For deeper sedation to treat intractable suffering, Quill and Byock [in 2000] suggested Midazolam, Lorazepam, Propofol, Thiopental, Pentobarbital, or Phenobarbital. Palliative care physicians can place a small needle just under the skin, or set the IV to a very slow drip rate, to deliver minimal fluid along with these medications.
To reduce pain, Duragesic/Fentanyl is a patch that is applied to the skin and delivers an effective morphine-like medication. Since it is absorbed slowly, the first patch should start 12 to 24 hours before stopping oral or intravenous narcotics. The patches are available in sizes that deliver 25 to 100 micrograms per hour however for extreme pain, more than one patch can be used. Since this drug can depress the brain center responsible for the drive to breathe, a dose that is too high because it is much greater than needed to reduce pain, may hasten dying. Doctors usually do not reduce the dose of medication once the signs of pain are gone, for fear that the pain may return.
Duragesic/Fentanyl is expensive but its cost is often included in the comprehensive care that hospice offers. Sometimes, families of terminally ill patients must plead with prescribing physicians to persuade them to increase the dose of pain-relieving medications. Signs of discomfort are general agitation including thrashing about, waving the hands, and grimacing. Since physicians and nurses associated with hospice usually have extensive experience in recognizing and treating pain, this is the most important reason to consider using the hospice benefit. Another reason is that hospice offers a full year of support that includes grief groups for the surviving family members.
At the very end of life, an estimated 5 to 15 percent of terminal patients experience extreme suffering that requires Terminal (or Palliative) Sedation, also called Controlled Sedation for Refractory Suffering. Defining each term is instructive: "Refractory" means resistant to usual treatments. "Suffering" can be spiritual, emotional, or existential as well as physical. "Controlled" means the physician uses doses of medications that are sufficient only to reduce suffering, not to intentionally hasten dying.
It is important to clearly document your desire to Voluntarily Refuse Food and Fluid before your doctor initiates sedating and pain-relieving medications, as they may contribute to your loss of consciousness. Put your wishes in writing and sign them in the presence of witnesses. As an alternative, verbally express your wishes to your doctor in front of witnesses and ask the doctor to record these wishes in a written progress note in your medical chart. There are two reasons for these recommendations. You want to make sure that after you lapse into unconsciousness, your doctor does withdraw your IVs or feeding tubes; otherwise, you could exist indefinitely. On the other hand, if you had been eating and drinking by mouth prior to your lapse in consciousness, another person might claim that your physician committed "slow euthanasia" by sedating you so much that you could no longer eat or drink.
Sedation can also be tried as an experiment, with the outcome to continue living. "Respite Sedation" is a state of temporary unconsciousness and the resulting rest may help you regain your strength, especially if you had been too sleep-deprived and anxious to deal with your pain and existential issues. In 2001, Rousseau described how some patients, after Respite Sedation, decided to remain alert and continued to meaningfully interact with others.