Artificial Nutrition and Hydration: Having the Conversation
Providers must compassionately convey to patients and families the realities related to artificial nutrition and hydration at the end of life, including potential harms.
Clinician conversations with patients and families about whether to use artificial nutrition and hydration (ANH) in frail elders with advanced disease can be challenging. Ethical principles, case law, and formal opinions of medical and advocacy groups uphold the position that ANH are medical interventions, and decisions regarding its use fall under the same paradigm for informed consent used in all medical decision-making: educating patients and families about benefits and harms to allow fully informed patient and family-centered decision-making within the framework of the patient’s overall values and specific goals for the intervention.
This requires that health professionals be knowledgeable about the research findings on benefits and harms of ANH, and have the communication skills to convey these to patients and families in an understandable and culturally appropriate manner.
The ethical issues have been discussed over the past 40 or 50 years, with the current consensus being that ANH are medical interventions with benefits and burdens akin to other medical interventions. Decisions around ANH involve the ethical principles of patient autonomy, beneficence, and nonmaleficence. To ensure patient autonomy, providers need to be fully aware of patient/family goals and patients and families need to be fully informed about whether the intended interventions can realistically achieve these goals. They also need to be aware of possible side effects and toxicity of interventions and weigh the benefits of the treatment against the possible burdens in light of patient-specific goals.
Beneficence, or the imperative to do what is best for the patient, requires that clinicians be fully aware of indications and contraindications of therapy, and both the expected benefits and possible harms of interventions, to discuss these with patients and families, and to recommend interventions that provide net benefit to the patient. Nonmaleficence, the imperative to do no harm, also demands that clinicians avoid recommending those treatments whose harms outweigh the benefits in light of a particular patient’s circumstances and goals.1, 2
Legal case law over the past 40 years has also established that ANH are medical interventions, not obligatory basic care, and decisions about their use require consideration of the benefits and harms. From the Quinlan case in 1975, to the Cruzan case in 1990, to the Schiavo case in 2005, federal and state courts have consistently upheld the status of ANH as medical interventions and the rights of the individual or his or her legal decision-maker to forgo the treatment.3
Many medical and advocacy organizations, such as the Academy of Nutrition and Dietetics,4 the American Medical Association,5 the American Geriatrics Society,6 the American Academy of Neurology,7 the Alzheimer’s Association,8 the American Academy of Hospice and Palliative Medicine,9 the American Nursing Association,10 and the Hospice and Palliative Nurses Association,11 have position statements on the provision of artificial nutrition and hydration that also indicate that ANH are medical interventions, with possible benefits and predictable side effects. These organizations stress the importance of truly informed consent to allow patient autonomy to be possible. This includes informing patients and families of alternative treatments and interventions to ANH.
So why is it still so hard for health care providers to have the conversation? Is it because of lack of knowledge on the part of patients and families, and on the part of interdisciplinary health care providers, about the evidence base regarding provision of ANH to seriously ill frail elders? Is it because of unrealistic expectations of what can be accomplished by ANH on the part of patients, families, and clinicians? Or is it because of the emotionally laden content of any discussion of withholding nutrition or hydration, albeit artificial, from patients?
ANH are easily conflated with the act of normal feeding, as of an infant, with all of its attendant symbolism of caring and love. But ANH have little in common with eating a normal meal around the dinner table with loved ones. In fact, ANH may further isolate patients from human contact and its attendant acts of caring.12, 13
Some say that patients and families have unrealistic expectations and demand unreasonable interventions for their loved ones. Yet, research indicates that when presented with all the relevant facts, patients and families generally opt to forgo more aggressive interventions when benefits are marginal.14
Perhaps the fault lies in the lack of formal training of health care professionals, especially physicians, in how to have these challenging conversations.
A framework is presented for having these challenging discussions with patients and families in a supportive way that augments autonomous informed decision-making on the part of patients and families.
Resources for health professionals and for patients and families are included.
Artificial nutrition: Nonoral, mechanical feeding either by intravenous or enteral route. Enteral feedings may be provided through either nasogastric tubes or gastrostomy, esophogostomy, or jejunostomy tubes that are placed either endoscopically or in open surgical procedures. Intravenous nutrition is administered through a central line and often is called total parenteral nutrition (TPN).11 Parenteral nutrition can also be administered through a peripheral vein.14
Enteral Feeding for Patients With End-Stage Dementia
Unfortunately, the body of the research evidence fails to substantiate that any of these goals is achieved through enteral tube placement in patients with advanced dementia.15, 16 In fact, considerable burdens may ensue, including the use of restraints to prevent dislodgment of tubes, an increase in pressure sores due to immobility and increased urinary or rectal output with maceration of skin, and an increase of aspiration pneumonia. Some studies even suggest increased mortality results when compared with conservative management.
The evidence is compelling enough for three organizations, the American Geriatrics Society, the American Medical Directors Association, and the American Academy of Hospice and Palliative Medicine to choose as their No. 1 recommendation for the ABIM Choosing Wisely Initiative17 the avoidance of inserting percutaneous feeding tubes in individuals with advanced dementia, and the recommendation of offering oral assisted feedings instead based on strong evidence that ANH does not prolong life or improve quality of life in patients with advanced dementia while imposing possible burdens such as the need for hospitalizations, surgical procedures, fluid overload, diarrhea, abdominal pain, local complications, and less human interaction while failing to decrease3 (and possibly increasing) episodes of aspiration pneumonia.
Enteral and Parenteral Feeding in Patients With Metastatic Cancer
Alternatives to ANH include keeping the patient’s mouth and mucus membranes moist and using ice chips in the oral cavity to alleviate thirst and taking small bites to enjoy taste. Although appetite stimulants have been tried, these also are unlikely to be effective in cancer anorexia/cachexia syndrome, but time-limited trials of such agents as megestrol acetate or steroids could be considered when weighed against known side effects, if improving appetite is an important personal goal for the patient.3
Enteral and Parenteral Nutrition and Hydration in Patients With Far Advanced Bulbar Amyotrophic Lateral Sclerosis (ALS)
Parenteral Hydration in End-Stage Advanced Illness
What do we know currently? Does artificial hydration effectively relieve thirst in seriously ill dying patients? Does artificial hydration extend life? Does artificial hydration alleviate delirium or other distressing symptoms? Research is difficult to conduct in this frail, vulnerable population, hence the paucity of well-designed studies examining these specific questions.
It has been fairly well established that intravenous fluid is not an effective intervention for relief of thirst. More effective interventions are keeping the mouth and mucous membranes moist with frequent small sips of fluid or introduction of ice chips into the oral cavity, as well as maintaining good oral hygiene.3
Epidemiological studies comparing hospice patients, who generally do not receive hydration artificially when close to death, with similar patients who are not in hospice and may be receiving ANH, more routinely fail to indicate that nonhospice patients live longer. In fact, some studies seem to indicate that patients receiving hospice and palliative care live longer than matched controls, so perhaps it can be inferred that artificial hydration administered when the person is close to death is unlikely to extend life.21
Some palliative care experts point out that dehydrated patients who are taking opioids for symptom management may accumulate toxic metabolites causing delirium, and that hydration may relieve this delirium.22 Still others argue for changing regularly administered opioids to an as-needed schedule once oral intake ceases, to prevent delirium from occurring.3
Some experts are concerned about excess fluid accumulation in body tissues and lungs causing distressing edema and/or pulmonary congestion, especially in patients who have low levels of serum proteins with its attendant third-spacing. Some experts posit that dehydration may actually improve comfort through the release of endorphins, noting the ease with which frail elders can slip into a dehydrated state unnoticed due to lack of troubling symptoms other than decreasing level of consciousness.3
With little evidence to guide us, we should perhaps proceed as follows: “First, do no harm.” If the patient is expected to die and is not experiencing discomfort, or if the patient is experiencing significant edema or pulmonary congestion, avoid initiation of ANH (or discontinue it) while continuing less invasive interventions for comfort, such as moistening mucus membranes frequently and use of ice chips orally.
If the person is expected to die and has agitated delirium thought to be due to possible opioid toxicity, first hold the opioids, and if ineffective at relieving agitation, consider a time-limited trial of hydration. If the person is suspected of having a reversible etiology causing decline and is dehydrated, consider a time-limited trial of fluids to see if he or she improves.
ANH Use in the End Stages of Chronic Illnesses
Structuring the Conversation
• Setting: These vitally important conversations should occur with the patient and/or authorized decision-maker in a private setting that is conducive to comfortable and intimate communication. The clinician should ensure that there will be no interruptions, and body language should be commensurate with a respectful and caring attitude (eg, taking the time to sit down).
• Perception: The clinician ascertains what the patient and family understand about the disease. He or she should also elicit what is important overall to the patient and family, and what they believe can be accomplished realistically.
• Invitation: The clinician asks what the patient and family want to know about the disease and the patient’s condition.
• Knowledge: The clinician imparts knowledge to the patient and family, clarifying any misconceptions and presenting alternative interventions that can realistically achieve patient-specific goals of care, along with known possible harms and benefits of each.
• Emotion: The clinician should allow time for the patient and family to express emotions, resisting the urge to talk over the emotions, empathizing, and assuring the patient and family that he or she will be there for them.
• Strategy and Summary: Once emotions have settled, the clinician should jointly discuss with the patient and family the next steps and follow up periodically to determine whether and how patient goals are being met by the interventions, and adjust the treatment plan together accordingly.
Case Study Conclusion
The attending physician then explains the usual course of Alzheimer’s dementia, with its inexorable decline leading to death. She points out that insertion of a feeding tube is a surgical procedure with possible complications and local discomfort, and that studies have not found it to be useful when used with patients like their mother. The possible side effects are presented, including increased risk for developing another aspiration pneumonia. Then she describes the use of oral assisted feeding in their mother’s case, with use of pureed food and nectar-thickened liquids as an alternative that has fewer harms associated with it. The family chooses to institute a program of assisted oral feedings with Edith upon her discharge back to the nursing facility, and often take turns helping Edith during meals.
There are frameworks to help guide the clinician in having these conversations, such as the SPIKES Framework, which may lessen the difficulty of initiating and continuing these discussions.
It is an essential part of our professional responsibility to fully inform patients and families about medical interventions, including ANH, to promote truly informed patient-centered decision-making by patients and families.
— Cheryl Arenella, MD, MPH, board certified in family medicine as well as hospice and palliative medicine, worked as a contracted cancer education program specialist in the Office of Communication and Education of the National Cancer Institute from 2005 through 2013. She served as a consultant medical director for the National Hospice and Palliative Care Organization from 2006 to 2010, working in the areas of quality and compliance. She works as a health consultant for hospice and palliative care programs in the areas of education, compliance, quality, program development, and medical staff development.
Resources for Health Professionals
• End-of-Life Care in the Setting of Cancer: Withdrawing Nutrition and Hydration (www.medscape.org/viewarticle/718781_print)
• Fast Facts and Concepts #010: Tube Feed or Not Tube Feed?, 2nd edition. (www.eperc.mcw.edu/EPERC/FastFactsIndex/ff_010.htm)
• POLST (Physician Orders for Life-Sustaining Treatment) Paradigm (www.polst.org/educational-resources/)
• Choosing Wisely: An initiative of the ABIM Foundation (www.abimfoundation.org/Initiatives/Choosing-Wisely.aspx)
• ALS Association: Information About Feeding Tubes (www.alsa.org/als-care/resources/publications-videos/factsheets/feeding-tubes.html)
• Alzheimer’s Association End of Life Decisions: Honoring the wishes of a person with Alzheimer’s disease (/www.alz.org/national/documents/brochure_endoflifedecisions.pdf)
• FamilyDoctor.org: Artificial Hydration and Nutrition (http://familydoctor.org/familydoctor/en/healthcare-management/end-of-life-issues/artificial-hydration-and-nutrition.html)
• American Hospice Foundation: Artificial Nutrition and Hydration at the End of Life: Beneficial or Harmful? (http://americanhospice.org/caregiving/artificial-nutrition-and-hydration-at-the-end-of-life-beneficial-or-harmful)
• Aging with Dignity: Five Wishes (www.agingwithdignity.org/five-wishes.php)
• Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient With a Life-Threatening Illness, Fifth Edition by Hank Dunn (http://hankdunn.com/purchase/hard-choices-for-loving-people/)
• Prepare website (www.prepareforyourcare.org)
• WebMD: Questions and Answers: Artificial Nutrition and Hydration and End of Life Decision Making (www.webmd.com/balance/questions-answers-artificial-nutrition-hydration-end-of-life-decision-making)
2. Moulton B, King JS. Aligning ethics with medical decision-making: the quest for informed patient choice. J Law Ethics. 2010:38(1):85-97.
3. Emanuel LL, Ferris RFD, von Gunten CF, Von Roenn J, eds. EPEC-O: Education in Palliative and End-of-Life Care for Oncology. The EPEC Project, Chicago, IL, 2005. Education in Palliative and End-of-Life Care for Oncology: Module 11: Withdrawing Nutrition and Hydration. http://www.cancer.gov/cancertopics/cancerlibrary/epeco/selfstudy/module-11/module-11-pdf.
4. O’Sullivan Maillet J, Baird Schwarz D, Posthauer ME; Academy of Nutrition and Dietetics. Position of the Academy of Nutrition and Dietetics: ethical and legal issues in feeding and hydration. J Acad Nutr Diet. 2013;113(6):828-833.
5. AMA policy on provision of life-sustaining medical treatment. American Medical Association website. http://www.ama-assn.org//ama/pub/physician-resources/medical-ethics/about-ethics-group/ethics-resource-center/end-of-life-care/ama-policy-provision-life-sustaining-medical.page?.
6. American Geriatrics Society. Feeding Tubes in Advanced Dementia Position Statement. http://www.americangeriatrics.org/files/documents/feeding.tubes.advanced.dementia.pdf. May 2013.
7. Bacon D, Williams MA, Gordon J. Position statement on laws and regulations concerning life-sustaining treatment, including artificial nutrition and hydration, for patients lacking decision-making capacity. Neurology. 2007;68(14):1097-1100.
8. Alzheimer’s Association National Board of Directors. Assisted Oral Feeding and Tube Feeding. http://www.alz.org/documents_custom/statements/assisted_oral_tube_feeding.pdf. Approved September 2011.
9. American Academy of Hospice and Palliative Medicine. Statement on Artificial Nutrition and Hydration Near the End of Life. http://www.aahpm.org/positions/anh. Approved by the Board of Directors September 13, 2013.
10. Congress on Nursing Practice and Economics. Forgoing Nutrition and Hydration. Revised Position Statement. http://www.nursingworld.org/MainMenuCategories/EthicsStandards/Ethics-Position-Statements/prtetnutr14451.pdf. Adopted by ANA Board of Directors. Effective date: March 11, 2011.
11. Hospice and Palliative Nurses Association. Hospice and Palliative Nurses Association (HPNA) Position Statement: Artificial Nutrition and Hydration in End-of-Life Care. http://www.hpna.org/pdf/PositionStatement_ArtificialNutritionAndHydration.pdf. Approved by the HPNA Board of Directors June 2003.
12. Casarett D, Kapo J, Caplan A. Appropriate use of artificial nutrition and hydration—fundamental principles and recommendations. N Engl J Med. 2005;353(24):2607-2612.
13. Tsai E. Withholding and withdrawing artificial nutrition and hydration. Paediatr Child Health. 2011;16(4):241-244.
14. Watters JM, Freeman JB. Parenteral nutrition by peripheral vein. Surg Clin North Am. 1981;61(3):593-604.
15. Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: A review of the evidence. JAMA. 1999;282(14):1365-1370.
16. Ersek M. Artificial nutrition and hydration: clinical Issues. J Hosp Palliat Nurs. 2003;5(4):221-230.
17. Choosing Wisely: An initiative of the ABIM Foundation. http://www.abimfoundation.org/Initiatives/Choosing-Wisely.aspx.
18. Raijamakers NJH, van Zyulen L, Costantini M, et al. Artificial nutrition and hydration in the last week of life in cancer patients. A systematic literature review of practices and effects. Ann Oncol. 2011;22(7):1478-1486.
19. Jatoi A, Loprinzi C. Current management of cancer-associated anorexia and weight loss. Cancer Network website. http://www.cancernetwork.com/print/174523. April 1, 2001.
20. Hallenbeck J. Tube Feed or Not Tube Feed? 2nd Edition. Fast Facts and Concepts #110. Medical College of Wisconsin website. http://www.eperc.mcw.edu/EPERC/FastFactsIndex/ff_010.htm.
21. Connor SR, Pyenson B, Fitch K, Spence C. Iwasaki K.Comparing hospice and nonhospice patient survival among patients who die within a three-year window. J Pain Symptom Manage. 2007;33(3):238-246.
22. Lawlor PG. Delirium and dehydration: some fluid for thought. Support Care Cancer. 2002;10(6):445-454.
23. Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES- A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5:302-311.