Artificial Nutrition and Hydration at End-of-Life Charlotte J. Molrine, PhD, CCC-SLP Edinboro...

Artificial Nutrition and Hydration at End-of-Life

Charlotte J. Molrine, PhD, CCC-SLP

Edinboro University of Pennsylvania

Speech, Language & Hearing Department

Introduction & Learning Expectations

Identify pros and cons of artificial nutrition and hydration (ANH).

Differentiate burdens and benefits of terminal hydration and starvation.

Identify cultural differences of end-of-life and prolongation of life.

Understanding Dysphagia

Often elderly patients are diagnosed with dysphagia in the hospital setting while dealing with other critical illness (Sullivan, 2008).

Speech-language pathologists (SLPs) are frequently consulted to present recommendations for nutrition and hydration management in such cases, as well as in cases where dysphagia accompanies a progressive terminal disease, or arises in the care of persons who are dying.

The Role of the SLP

In our SLP practice, we expect that dysphagia will be present in a known percentage of patients with progressive disease processes (e.g., PD, ALS).

As the disease progression evolves, the symptom of dysphagia is readily identifiable and managed somewhat predictably, although decisions about whether or not to initiative artificial nutrition and hydration (ANH) will almost invariably arise.

The Role of the SLP

“In circumstances that prevent an individual from safely consuming an oral diet or sustaining adequate nutrition and hydration, alternative alimentation, such as tube feeding, is often recommended” (Landes, 1999, p. 109).

Patients may struggle to understand what is happening to them because of accompanying medical conditions or cognitive impairments.

The Role of the SLP

Both the quality of care and the quality of life can be influenced by the manner in which family caregivers understand and comply with nutrition and hydration strategies for the individual with dysphagia (Sullivan, 2008).

SLPs have an important role in providing competent and compassionate care and support to families and patients coping with the handicap of dysphagia.

Each person must be treated as an individual, and all aspects of each situation must be considered before a decision is made for or against supplemental feeding (Leslie, 2008).

Artificial Nutrition & Hydration

Originally, artificial nutrition and hydration (ANH) were developed to provide short-term support to patients who were acutely ill but expected to recover from a disease and to resume eating and drinking.

Unfortunately, these temporary measures have come to be used as long term treatment, and in these situations, ANH sometimes presents an ethical dilemma (Gillik, 2006).


Decision-making about feeding tube placement for continued nutrition and hydration is especially difficult in diseases where no cure is available but death is not imminent (e.g., dementia).

Decisions must also be made about prolonging life through ANH in an individual whose disease does not have a cure and for which death is imminent (e.g., terminal cancer) (Brodsky, 2005).


For those patients who are cognitively impaired, surrogate decision makers are expected to use substituted judgment in determining how to proceed (Gillik, 2006).

Patients who are cognitively intact at the time they lose the ability to eat and drink, including many individuals with ALS or metastatic cancer, can participate in the decision-making process.

The decision maker must weigh the benefits and burdens of intervention; and obtain factual information about what ANH can and cannot achieve.


The choice to initiate, withhold, or discontinue ANH should be made by a fully informed decision maker, be it the patient or his/her surrogate (or proxy) decision maker (Hanna & Joel, 2005; Sharp, 2005).

Because ANH can be a life-sustaining treatment, refusal by the patient or a surrogate decision-maker to accept this recommendation can create discomfort for some family members because they must recognize that their loved one is in the dying process.

Potential Benefits of ANH

The potential benefits of ANH vary depending on the clinical scenario.

For patients in a persistent vegetative state or who have short bowel syndrome, ANH prolongs life.

ANH may benefit patients requiring supplemental nutrition, especially during chemotherapy or radiation therapy, for some types of gastrointestinal cancers.


ANH may provide enhanced nutrition for some groups, such as post acute stroke, and a limited trial of ANH may be particularly helpful in situations where the prognosis is uncertain.

A patient who has had a major stroke with concomitant dysphagia could be maintained with ANH for a period of weeks to determine whether or not he/she will recover enough neurological function to eat and want to continue treatment.


Even at the end of life, ANH can be justified to allow for “unfinished business,” the resolution of which can produce peace of mind for both patient and caregivers.

Similarly, ANH can be made to prolong dying if the patient needs time for a relative to arrive, financial affairs to be concluded, or an important event, such as the birth of a grandchild to occur (Fordyce, 2000).


Certain religious and cultural values may influence the choice to prolong life with ANH.

There are a few studies to date that have begun to examine preferences about long-term tube feeding at end of life in culturally diverse populations, including Japanese Americans and Japanese (Matsumura, Bito, Liu, Kahn, Fukuhara, Kagawa-Singer, & Wenger, 2002); African Americans (Farrow, McCallum, & Messinger-Rapport, 2004); and different religious groups (Kahn, Lazarus, & Owens, 2003; and Shapiro & Friedmann, 2006).


Whether the result of cultural and/or religious preferences, many people want assurances that their loved one is being cared for, and ANH symbolizes caring.

Although ANH is unlike conventional eating, it is often seen as nurturing, an extension of offering food and drink to a person as part of basic, humane care (Gillick, 2006).

Potential Burdens of ANH

There is frequent misunderstanding regarding the natural course of a life ending illness.

Often times, the choice to insert a feeding tube is to avoid having the patient “starve to death.”

The underlying thought seems to be that to withhold nutrition will cause undue pain (Hanna & Joel, 2005).

However, the benefits of ANH are not clearly defined when a terminal illness is involved.


Patient reports of thirst and hunger in the dying process are a useful source of information for SLPS participating in discussion about ANH decision-making.

McCann, Hall, and Groth-Juncker (1994) found that terminally ill patients did not experience hunger, and complaints of thirst and dry mouth were relieved with mouth care and sips of liquids in amounts far less than those needed to prevent dehydration.


During the dying process, there is a generalized breakdown of the body’s regulating mechanisms so decline continues even when the individual is provided with adequate calories and nutrients (Chouinard, Lavigne, & Villeneuve, 1998).

This generalized breakdown, through the process of catabolic metabolism, leads to natural terminal dehydration and starvation and occurs whether or not food and fluids are provided by mouth, by tube, or by IV (Cline, 2006).


Therefore, ANH in end stage advanced dementia and terminal illness does not always ensure comfort.

If the metabolism has already slowed, the feedings may cause bloating, distension, diarrhea, or aspiration (Cline, 2006).

Additional fluid intake raises the risk of overload, leading to increased secretions and congestion, which make breathing more difficult.

Terminal Starvation & Dehydration

Loss of appetite naturally occurs in terminally ill patients and is part of the body’s “shutting down” in preparation for death (Critchlow & Bauer-Wu, 2000).

Calorie deprivation from terminal starvation results in a partial loss of sensation, adding to the patient’s comfort during the dying process (Brody, Campbell, Faber-Langendoen, & Ogle, 1997).

Dehydration in terminally ill patients has been found to be beneficial and to improve the quality of an individual's last few days of life.


Anesthesia, reduced urine, decreased gastrointestinal fluids, and decreased pulmonary congestion have been reported as well as fewer episodes of nausea and vomiting, less coughing and chest congestion, and reduced sensations of drowning and choking (Critchlow and Bauer-Wu, 2000; Taylor, 1995).

Hydrating the dying person has been associated with complications such as increased pain, respiratory congestion, and swelling.


The combined effects of starvation and dehydration cause body chemistry changes which stimulate the production of natural endorphins.

The resultant mild euphoria may also act as a natural anesthetic to the central nervous system, blunting pain and other symptoms, so the need for narcotics may be reduced (Huffman & Dunn, 2002).

At end of life, gradual renal, circulatory, and other organ dysfunction occurs.


Fluid overload can stress the pulmonary system and increase patient discomfort.

Because terminal dehydration decreases total body water, it can have potential beneficial effects and thus facilitate a peaceful death.

Dehydration may decrease brain swelling and reduce the discomfort of associated headaches and confusion.


Basic mental function is generally preserved up to the last few days of life, when coma may occur.

Dehydration can also reduce cardiopulmonary problems such as congestive heart failure and pulmonary edema.

With a decline in respiratory tract secretions, the patient will have less coughing, choking, and shortness of breath.

The drowning, suffocating sensation may resolve.


There may be diminished need for repeated, unpleasant suctioning.

With dehydration, gastrointestinal fluid production can fall reducing the chance of bloating, nausea, vomiting, aspiration, and diarrhea.

The patient has less need to void and a reduction in urinary incontinence prevents the need for a urinary catheter.


Many times chronically and terminally ill patients may lose peripheral IV access.

Central access, whether short- or long-term, can be painful and limit patient mobility.

Mobility can also be restricted by restraints used to keep the invasive tubes and lines from inadvertent or purposeful removal by the patient.

Removing IVs and tubes can permit discontinuance of restraints, allowing increased mobility, comfort, and dignity.


IVs can also produce a technical distraction.

Their removal allows attention to be directed to other forms of support such as personal care or conversation.

Death from terminal dehydration and starvation usually occurs within one to three weeks (Quill, Lee, & Nunn, 2000).

It may result from changes in several mechanisms:


a reduction in white cell function associated with protein deficit may permit the development of sepsis leading to death;

arrhythmias related to myocardial degeneration or to electrolyte imbalance can cause cardiac arrest; and

weakness from muscle protein catabolism may lead to inadequate clearing of chest secretions and subsequent pneumonia caused by depressed respiration.

Benefits of Terminal Starvation

With change in body metabolism at end of life, the body uses fat as the predominant energy source, and ketones build up.

The result is ketonemia, a condition that produces a euphoric state that actually increases comfort.

A byproduct of the conversion of body fat to energy is water.


Individuals experiencing terminal starvation may have fluid requirements almost fully met by water produced through fat metabolism (Sullivan, 1993).

Unfortunately, feeding even small amounts can prevent ketonemia and prolong the sense of hunger (Cline, 2006).


Indeed hunger rapidly reappears when ketosis is relieved by ingesting small amounts of carbohydrate or when intravenous mixtures of 5% dextrose and water cause this metabolic shift (Sullivan, 1993).

The only limited discomfort associated with terminal dehydration is dry mouth.

Benefits of Terminal Dehydration

Comfort can be provided by family members and other caregivers by gently cleansing the mouth with a soft tooth brush, relieving dry mouth with ice chips or oral swabbing, and frequently applying a water-based lip balm (Dahlin, 2004).

Drying skin can also be moisturized with lotion.

End of Life Patients and Dysphagia

The end-of-life (EOL) population includes patients who are seriously ill and those who have other underlying conditions, such as advanced age, progressive disease, or advanced dementia.

A specialized skill set is required for EOL patients with dysphagia and their families.

SLPs must be able to adapt treatment plans to reduce risk and emphasize enhanced comfort and choice and they must facilitate patient/family communication (Levy et al., 2004).

End of Life Patients and Dysphagia

SLPs must optimize function related to dysphagia symptoms and minimize potential complications from continued oral feeding;

SLPs must work to improve patient comfort and eating satisfaction; and

They must promote positive feeding interactions for family members.

EOL Patients with Dysphagia and Choice

Patients may choose to forego instrumental diagnostic testing (e.g., VFSS), especially if the examination would not change the clinical outcome.

Patients may choose to refuse a prior recommendation for NPO status or choose not to initiate the use of ANH.

Families or patients may choose foods or food textures based upon cultural or familial significance.

Right to Refuse Medical Treatment

For patients with severe, unrelieved suffering and advanced, incurable illness, cessation of eating and drinking is considered part of the right to refuse treatment.

Voluntary cessation of eating and drinking is, by definition, a patient decision and the clinician’s role is one of continued care and support (Quill & Byock, 2000).

It is the fundamental right of competent patients to refuse medical treatment and to be free of unwanted bodily intrusion (Miller & Meier, 1998).


A clinician who counters a patient’s decision by forcing food or ANH risks committing assault.

Because it typically takes several days to a few weeks for death to occur by this means, the patient who seeks death by terminal dehydration and starvation retains an opportunity to change his/her mind.

Moreover, pain and suffering caused by the underlying disease can be treated by standard palliative measures, including administration of sedation.


The right to forego food and water, whether by mouth or by artificial means, is a method of voluntary death.

The distinction must also be made between the decision of the patient who has no underlying condition that interferes with normal appetite, digestion, or absorption of water and essential nutrients, but nevertheless intends to end his/her own life by not eating and drinking.

Palliative Care & ANH

Palliative care does not include or exclude any specific type of therapy, such as ANH.

Instead palliative care seeks to provide relief from symptoms caused by the terminal process.

Palliative care neither seeks to hasten or postpone death, but to relieve suffering (Moynihan, Kelly, & Fisch, 2005).

So if ANH is withheld, it does not mean that the patient as been abandoned.

At end of life, reducing physical discomfort and maintaining patient dignity are paramount.

ResourcesBrodsky, M. B. (2005). Ethics and quality of life: Opposing ideals? Perspectives on

Swallowing and Swallowing Disorders, 14(3), 7-12.

Brody, H., Campbell, M., Faber-Langendoen, K., & Ogle, K. (1997). Withdrawing intensive life-sustaining treatment: Recommendations for compassionate clinical management. NEJM, 336, 652-657.

Chouinard, J., Lavigne, E., & Villeneuve, C. (1998). Weight loss, dysphagia, and outcome in advanced dementia. Dysphagia, 13, 151-155.

Cline, R. D. (2006). Nutrition issues and tools for palliative care. Home Health Care Nurse, 24(1), 54-57.

Fordyce, M. (2000). Dehydration near the end of life. Annals of Long Term Care, 8(5), 29-33.

Gillik, M. R. (2006). The ethics of artificial nutrition and hydration—A practical guide. Practical Bioethics, 1, 5-7.

Hanna, E., & Joel, A. (2005). End-of-life decision making, quality of life, enteral feeding, and the speech-language pathologist. Perspectives on Swallowing and Swallowing Disorders, 14(3), 13-18.

Resources

Critchlow, J., & Bauer-Wu, S. (2002). Dehydration in terminally ill patients: Perceptions of long term care nurses. Journal of Gerontological Nursing, 28(12),

Dahlin, C. (2004). Oral complications at the end of life. American Journal of Nursing, 104(7), 40-47.

Fairrow, A., McCallum, T., & Messinger-Rapport, B. (2004). Preferences of older African-Americans for long-term tube feeding at end of life. Aging & Mental Health, 8(6), 530-534.

Gordon, M., & Alibhai, S. (2004). Ethics of PEG tubes: Jewish and Islamic perspectives. American Journal of Gastroenterology, 99, 1194.

Huffman, J. L., & Dunn, G. P. (2002). The paradox of hydration in advanced terminal illness. American College of Surgeons, 194(6), 835-839.

Kahn, M., Lazarus, C., & Owens, D. (2003). Allowing patients to die: Practical, ethical, and religious concerns. Journal of Clinical Oncology, 21(15), 3000-3002.

Landes, T. L. (1999). Ethical issues involved in patients’ rights to refuse artificially administered nutrition and hydration and implications for speech-language pathologists. American Journal of Speech-Language Pathology, 8, 109-117.

Resources

Leslie, P. (2008). Food for thought: How do patients with ALS decide about having a PEG? Perspectives on Swallowing and Swallowing Disorders, 17, 33-39.

Matsumura, S., Bito, S., Liu, H., Kahn, K., Fukuhara, S., Kagawa-Singer, M., & Wenger, N. (2002). Acculturation of attitudes toward end-of-life care. Journal of General Internal Medicine, 17, 531-539.

McCann, R., Hall, W., & Groth-Juncker, A. (1994). Comfort care for terminally ill patients: The appropriate use of nutrition and hydration. JAMA, 272, 1263-1266.

Miller, F. G., & Meier, D. E. (1998). Voluntary death: A comparison of terminal dehydration and physician-assisted suicide. Annals of Internal Medicine, 128(7), 559-562.

Moynihan, T., Kelly, D., & Fisch, M. (2005). To feed or not to feed: Is that the right question? Journal of Clinical Oncology, 23(25), 6256-6259.

Quill, T. E., & Byock, I. R. (2002). Responding to intractable terminal suffering: The role of terminal sedation and voluntary refusal of food and fluids. Annals of Internal Medicine, 132(5), 408-413.

Quill, T. E., Lee, B. C., & Nunn, S. (2000). Palliative treatments of last resort: Choosing the least harmful alternative. Annals of Internal Medicine, 132(6), 488-493.

Resources

Sharp, H. (2005). When patients refuse recommendations for dysphagia treatment. Perspectives on Swallowing and Swallowing Disorders, 14(3), 3-6).

Shapiro, D., & Friedmann, R. (2006). To feed or not to feed the terminal demented patient—Is there any question? IMAJ, 8, 507-508.

Sullivan, R. J. (1993). Accepting death without artificial nutrition or hydration. Journal of General Internal Medicine, 8, 220-224.

Taylor, M. (1995). Benefits of dehydration in terminally ill patients. Geriatric Nursing, 16(6), 271-272.

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