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Ethical Issues Regarding Nutrition in Advanced IllnessMichael Aref, MD, PhD, FACP, FHMAssistant Medical Director of Palliative MedicineCarle Hospital and Physician Group

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Disclosures

• None

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Objectives

• Understand complications of artificial nutrition and hydration that are not ethically justifiable.

• Identify ethical issues with continuing or stopping artificial nutrition and hydration.

• Be able to discuss and clarify “pleasure feeding” with patients and their families.

• Be able to discuss issues of self-dehydration and self-starvation.

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PATIENT VIGNETTECB

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CB

6bioethicsarchive.georgetown.edu/pcbe/images/living_well_graph.gif

The Fate of ConanDisease Trajectories

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ARTIFICIAL NUTRITION & HYDRATIONPROS & CONS

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Nutrition Dependent Disease And Disease Independent of Nutrition

Malnutrition• Malnutrition or malnourishment

is a condition that results from eating a diet in which nutrients are either not enough or are too much such that the diet causes health problems.

Cachexia• Cachexia or wasting syndrome is

loss of weight, muscle atrophy, fatigue, weakness, and significant loss of appetite in someone who is not actively trying to lose weight.

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Benefits of Artificial Nutrition and Hydration

• Physiological support for temporary inability to swallow or to use their gastrointestinal tract due to otherwise reversible conditions.

• Artificial nutrition and hydration (ANH) may prolong life and allow a more accurate assessment of the patient's chance of recovery.

• For patients with chronic disabilities who are unable to take in adequate nutrition by mouth and who enjoy the life they lead, ANH is physiologically and qualitatively useful.

Nutr Clin Pract. 2006 ;21:118-125

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Supportive NOT Curative

• ANH alone, while sometimes supportive, does not cure or reverse any terminal or irreversible disease or injury.

• Multiple studies have consistently failed to show meaningful clinical benefit from ANH in terminally ill patients.

Nutr Clin Pract. 2006 ;21:118-125Nutr Clin Pract.1994;9:91– 100

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System Shut Down

• Terminal illness is a biochemical and metabolic process = slowing of bodily function.– Loss of appetite and thirst.– Difficulty swallowing.– Simultaneous inability to utilize nutrients.

• Few symptoms from dehydration or lack of nutrition.

ANH is “counterpalliative”

Palliat Support Care. 2006;4:135–43.NEJM. 2004;350:2582–90.Medsurg Nurs. 2000;9:233–44.

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Little Quantity-of-Life, Less Quality-of-Life

• ANH support by either the enteral or parenteral route to terminally ill patients suggests increased suffering without improved outcome.

• ANH, whether provided by “feeding tube” or vein, is often associated with significant complications, including bleeding, infection, physical restraints such as tying the patient down, and in some cases a more rapid death.

• TPN does not alleviate hunger.JAMA.1999 ;282:1365– 1370J Gerontol.1998 ;53:M207– M213Lancet.1997 ;349:496– 498Appetite. 1989;13(2):129-41

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Artificial Nutrition and Hydration

• Amyotrophic lateral sclerosis– Improves quality of life in patients with the bulbar form of amyotrophic

lateral sclerosis.• Cancer

– A review of 70 published, prospective, randomized trials of ANH among cancer patients failed to demonstrate the clinical efficacy of nutrition support for such patients.

• Dementia– Tube feeding does not increase life expectancy and worsens quality of life

in end-stage dementia, i.e. when dysphagia develops due to dementia.

End-of-Life Indications and Contraindications

Clin Nutr. 2006 Apr;25(2):330-60Nutr Clin Pract. 2006 ;21:118-125

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ARTIFICIAL NUTRITION & HYDRATIONEMOTIONS & ETHICS

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Emotional Perspective

• Family members– Unwillingness to accept terminal prognosis.– Belief in cruelty of dying process if ANH not administered.– Need to demand interventions to avoid guilt.– Would not ask for themselves, but do ask for family members.

• Physicians– Lack of familiarity with palliative care techniques and evidence.– Length of time required to educate families on true facts of ANH.– Reimbursement for insertion of PEG tube, etc.– Desire to avoid controversial discussions.– Fears of litigation.

• Administrators– Reimbursement for tube feedings, etc.– Fear of regulatory sanctions if ANH not administered (nursing homes).– Extra time and staff needed to assist with oral feedings in weakened or demented patients.– Fears of litigation.

• Withholding ≠ WithdrawalClin Nutr. 2016 Jun;35(3):545-56J Gen Intern Med. 2011 Sep;26(9):1053-8J Am Med Dir Assoc. 2007;8:224–28.

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Ethical Perspective

• Prerequisites of artificial nutrition and hydration are:1. an indication for a medical treatment, and2. the definition of a therapeutic goal to be achieved, and3. the will of the patient and his or her informed consent.In all cases however the treating physician has to take the final decision and responsibility.

• Withholding = Withdrawal

Clin Nutr. 2016 Jun;35(3):545-56J Gen Intern Med. 2011 Sep;26(9):1053-8J Am Med Dir Assoc. 2007;8:224–28.

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C for Critical or Comfort

Critical Care• Mechanical Ventilation• Vasopressors• Artificial Nutrition and Hydration

– D5 or D10 is not nutritional support

Comfort Care• Supplemental oxygen for comfort• Symptom management• Pleasure feeding

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ARTIFICIAL NUTRITION & HYDRATIONTALKING WITH PATIENTS AND FAMILIES

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Talk Early. Talk Often.

• Anticipate trajectory of disease so that you can have continuing conversations about goals-of-care and advance directives.

• Making decisions empowers patients and decreases burden on family because these conversations have already occurred.

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REMAP Artificial Nutrition and HydrationStep What you say or do

Reframe why the artificial nutrition and hydration aren’t appropriate.

You may need to discuss dysphagia or why artificial nutrition and hydration will not be helpful “Given this news, it seems like a good time to talk about what to do now.”

Expect emotion and empathize. “It’s hard to deal with all this.”“I can see you are really concerned about [x].”“Tell me more about that—what are you worried about?” “Is it OK for us to talk about what this means?” “It is human nature to worry about feeding our loved ones.”

Map the future. “Given this situation, what’s most important for you?”“When you think about the future, are there things you want to do?” “As you think towards the future, what concerns you?”

Align with the patient’s values. “As I listen to you, it sounds the most important things are [x,y,z]."

Plan medical treatments that match patient values.

“Here’s what I can do now that will help you do those important things. What do you think about it?“ “Trying to force calories down a tube won’t make you feel any better or live any longer. What do you think about talking about things that we can do that will help you going forward?”

Expect questions about more artificial nutrition and hydration

“Here are the pros and cons of what you are asking about. Overall, the studies of artificial nutrition and hydration in advanced illness tells me that trying it would do more harm than good at this point.“ “’Pleasure feeding’ or ‘comfort feeding’ focuses on the humanness of enjoying the taste of favorite foods in the company of those we most enjoy. If calories won’t fix their disease trying to push them will likely do more harm than good.”

Talk about continuing to provide aggressive care but now focused on comfort rather than cure. “We can help your [x] have as much good time as they can going forward. We’ll focus on the joy of being able to

taste food and be around family. Does that sound like a good plan?”

vitaltalk.org

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ARTIFICIAL NUTRITION & HYDRATIONVOLUNTARY STOPPING EATING & DRINKING (VSED)

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Voluntary Stopping Eating and Drinking (VSED)

• Why?– To preserve patient autonomy.– To retain control.– To hasten death because of unacceptable suffering

without infringing on fundamental ethical principles of Western society.

– “Being tired of life” or “having it done”.– Viewing themselves as a burden to their family members.

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Voluntary Stopping Eating and Drinking (VSED)

• Variant of stopping life-sustaining treatment.• Not physician assisted suicide (PSA):– Provider must assess decision making capacity.– Provider need only agree not to interfere.– Provider should be prepared to address symptom

burden.• VSED usually leads to death in 1-3 weeks.

“The desire for a hastened death regularly occurs, but such thoughts are frequently kept secret by patients unless clinicians specifically inquire.”

BMC Palliat Care. 2014 Jan 8;13(1)Ann Intern Med. 2000 Mar 21;132(6):488-93Widener Law Rev. 2011, 17: 351-361

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ARTIFICAL NUTRITION & HYDRATIONCASE STUDIES

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Case Study

A 49-year-old male came into the cardiac care unit with an inferior wall myocardial infarction, and shortly thereafter coded. Resuscitation attempts succeeded; however, over the course of a few days he went into multisystem failure. On a respirator, receiving multiple medications to support life, and unable to eat anything by mouth or to tolerate tube feedings, the nursing staff were concerned with his nutritional status. An ongoing debate occurred between the physicians and nurses, with the physicians maintaining that he was not “viable enough” for total parenteral nutrition (TPN) but if his condition were to stabilize he would be a candidate. The nurses argued that without adequate nutrition the patient would never stabilize and heal; they felt that he was being starved to death. The intense emotional response of the nurses led the physicians to rethink their approach to care. After 10 days without food and still in multisystem failure, the patient was started on TPN. Regardless, he died several days later.

Life support is life support

www.practicalbioethics.org/files/case-study/artificial-nutrition-and-hydration.pdf

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Case Study

Mrs. J is an 85-year-old woman with advanced dementia and Stage IV non-small cell lung cancer (NSCLC), being cared for at home. Her daughter was distressed that her mother was no longer able to eat and drink “sufficient quantities to sustain life.” Feeding her had become a battle—she spat out her food, turned her head away, and struck out whenever attempts were made to feed her. The daughter asked about placement of a feeding tube so that her mother could be fed “passively” without the “stress” of attempted oral feeding. She expressed that this seemed such a “minor procedure” with the potential for great benefit to her mother. The daughter described her mother as a fiercely independent woman whose husband (her father) had died shortly after her birth. She had never remarried and had worked two minimum wage jobs to support her daughter, as well as attending evening classes in a community college. She was described as a woman who rarely asked for help for herself but had always extended a helping hand to others. The Catholic Church was reported as a place of comfort for her.This elderly and much-loved woman did not have advance directives and had become increasingly withdrawn and uncommunicative over the past decade. Earlier conversations between the daughter and her mother did not reflect what she would want if she was no longer able to eat and drink independently, although she had expressed throughout her life a dread of being dependent on others. Independence and self-sufficiency were fundamental values for her and ones on which she prided herself. This daughter cared deeply for her mother, acknowledging the sacrifices her mother had made so that she could have a good education and opportunities in life that she herself never had. When Mrs. J was no longer able to care for herself her daughter had taken her into her own home, and had recently taken a leave of absence from work to care for her. Her husband and children were supportive.

Artificial Nutrition in Terminal Illness

www.practicalbioethics.org/files/case-study/artificial-nutrition-and-hydration.pdf

27www.practicalbioethics.org/files/case-studies/Pros-and-Cons-of-Tube-Feeding.pdf

28www.practicalbioethics.org/files/case-studies/Refusal-to-Eat.pdf