The Role of Nutritional Supplementation in Advanced Illness

1. The Role of Nutritional Supplementation in Advanced Illness John Mulder, MD, FAAHPM Vice President of Medical Services Faith Hospice

2. Definition of ANH • Artificial nutrition and/or hydration is a treatment intervention that delivers fluids and/or nutrition by means other than a person taking something in his/her mouth and swallowing it.

3. The questions . . . • “Should nutrition be given intravenously if my wife’s gut isn’t working right?” • “Should intravenous fluids be given to my father when he stops drinking and becomes dehydrated?” • “Should a feeding tube be placed if my mother can’t swallow without choking?”

4. Types of ANH • Enteral: Nutrition and/or fluids are delivered through a tube placed in the gastrointestinal tract. The tube may be passed through the nose and throat into the esophagus and ultimately into the stomach (nasogastric tube) or small intestine, or the tube may be surgically placed directly into the stomach (gastrostomy tube) or intestine (jejunostomy tube) through the wall of the abdomen.

5. Types of ANH • Parenteral: Nutrition and/or fluids are delivered via a catheter (very small tube) placed in a vein of the body. The catheter may be placed in a “peripheral vein” (usually in the lower part of the arm), or a “central vein” (one of the body’s larger veins, closer to the heart).

6. Enteral feeding tubes may deliver water, other liquids, special liquid diets, or even pureed foods. Parenteral nutrition can be either partial (having some of the nutrients neededby the body) or total (having all of the basic nutrients, in very simple form, needed by the body to produce energy and maintain weight). Parenteral fluids (intravenous fluids) are usually a salt and sugar water solution, with other substances like minerals added occasionally. What’s being given?

7. Intended to be used temporarily, for short periods of time, until a person with a reversible problem regains the ability to eat and drink normally. Use has become both more widespread and applied for longer periods. Intent of ANH

8. Indications

9. A person who gets aspiration pneumonia because of difficulty with swallowing and choking needs to have a gastrostomy tube placed to prevent recurrence of the aspiration pneumonia. Premise:

10. There is no good evidence that demonstrates that G or J tubes prevent aspiration pneumonia in a person who has difficulty swallowing. Evidence in persons with advanced Alzheimer’s disease that gastrostomy tubes actually cause more harm than if no tube had been placed. Other evidence: tube feeding may actually increase episodes of aspiration pneumonia. Careful feeding by hand is a better alternative. Fact:

11. Artificial nutrition speeds wound healing in a person who is unable to eat normally. Premise:

12. No good studies demonstrating that artificial nutrition and hydration speeds wound healing. In fact, if a person is incontinent (urine or stool) they may suffer from increased skin breakdown due to constant moisture and the irritation of urine and/or feces on the skin. Fact:

13. Persons with cancer cachexia (continued weight loss, not eating well) should receive ANH to maintain weight and strength. Premise:

14. Medical science has been unable to show any benefit from TPN use in patients with cancer cachexia. It does not keep a person from losing weight, does not improve a person’s nutrition, and does not help the person gain strength and energy. Some studies demonstrate shortened survival in persons with cancer cachexia who are treated with TPN. Fact:

15. A dying person who has become dehydrated due to lack of fluids experiences extreme thirst, pain and distress. Premise:

16. Dehydration in a seriously ill person with a terminal condition and in the frail elderly is not painful. Frail elderly persons have a blunted sense of thirst. In the dying patient, studies have shown that the majority never experience thirst. Any thirst that may occurs is easily alleviated by small amounts of fluids or ice chips given by mouth and by lubricating the lips. Fact:

17. A person with advanced disease or a terminal illness who stops eating will “starve to death” painfully. Premise:

18. When a person with advanced disease or a terminal illness stops eating, usually it is because disease has progressed to the point where the person is no longer able to process food and fluids as does a healthy person. Forcing this person to eat, or starting ANH does not help the person to live longer, feel better, feel stronger, or be able to do more. ANH will often produce bloating, nausea, or diarrhea. The majority of dying patients never experience hunger, and in those who do, pleasure feeds relieve the hunger. Fact:

19. Mechanical blockage of mouth, esophagus, or stomach, but otherwise functioning fairly well (especially if experiencing hunger) – G or J tube Bowel obstruction, but otherwise functioning well – TPN Temporary bout of severe nausea and vomiting or diarrhea causing serious dehydration can often benefit from a short course of intravenous fluids to rest the bowel. Circumstances where ANH of benefit

20. Some persons with HIV appear to benefit from ANH, especially those who have no active infection at the time of receiving it. Various GI pathology, malabsorption syndrome, colon resection Circumstances where ANH of benefit

21. TPN: Line infection Thrombosis Cardiac arrhythmia Pneumothorax N/G: Choking, discomfort Aspiration Pulling tube out (restraints) Erosion, abrasions of nasal passage, throat, esophagus, stomach Complications of ANH • G/J Tube: • Anesthesia • GI bleed • Diarrhea • Abd wall infx, peritonitis • IVF • Infection, cellulitis • Electrolyte imbalance • Fluid overload • Phlebitis

22. Secretions in the lungs diminished, less cough, congestion Dehydration can lead to a melting away of the swelling and increased comfort in a person who has edema or ascites With dehydration, there is less fluid in the GI tract, which may decrease nausea, vomiting, bloating and regurgitation Less urine output, thus less need to go to the bathroom for extremely weak and frail patients and less skin irritation when the bedbound person develops incontinence; less need for foley Implications of Dehydration

23. Judicial Decisions PVS Never Competent Persons State’s Prerogatives Limits of surrogate decision-makers Terminal condition PVS Advance Directive Children? Right of refusal rests with parents To assume LSMT must continue until death is imminent makes the child a passive object of technology Baby Doe Regulations (US Child Abuse Amendment of 1984) defer to clinical judgement ‘medically indicated’ ‘...appropriate nutrition, hydration, or medication’ Legal Concerns

24. U.S. Supreme Court says: • States can determine which evidentiary standard to apply to withdrawal/ withholding decisions. • Patients have a liberty interest in refusing unwanted medical treatment. • The state does not have to accept the substituted judgment of family members when the proof is not sufficient. • Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990)

25. What’s a liberty interest? • "The makers of our Constitution … conferred, as against the Government, the right to be let alone - the most comprehensive of rights and the right most valued by civilized men." • Olmstead v. U.S., 277 U.S. 438, 478   • Liberty interests have been interpreted by the courts to include the right to marry, to establish a home, to raise children and pick their schools, and to study a foreign language.

26. Decision Making Standards • Best interests • Objective standard • Reasonable person in this situation • Implied consent • Substituted judgment • Subjective standard • This person, this situation • Statements, wishes, goals, values, life style • Advance directives • Surrogacy rules or laws

27. Private and Public Morality • Not infrequently a private morality is at odds with the public morality as expressed through the enforcement or interpretation of the law. • We are then faced with the “Morality of Consent.” • One may feel it is not proper to accept society’s judgment.

28. Society’s Judgment • Feeding the hopelessly ill patient is a typical example where this dilemma arises. • Society’s judgment is: • Any adult can refuse any intervention, verbally when competent, by living will if not; • a system has been devised by which substitute judgment may be used; • there is a hierarchy in substitute judgment authority.

29. Examples • Two such subsets of Society, relevant to the dilemmas inherent in feeding, are the Medical Profession and Catholic and other Churches. • Medicine holds that inserting a naso-gastric tube is a medical intervention. • Catholic and other churches hold that extraordinary means need not be employed in cases of hopelessly ill patients. • But they may also believe that feeding, no matter how it is delivered is an ordinary means that must always be provided.

30. Courts have usually acquiesced to some of those ideas. • Therefore, (some) public ethics say that naso-gastric feeding is an extraordinary medical intervention that can be withheld if deemed futile and/or if refused by the patient.

31. Why Even Consider WH/WD ANH? • Burdens & Benefits Analysis • Goals of Care • as mutually derived by the family & health care team • comfort vs cure; palliation vs “treatment” • Appropriateness of Intervention • burdens & complications of placing/sustaining access • consistency with values of families/professionals/ others • consistency with goals & realistic prognosis • Lack of proven “benefit” & possible harm in mandating/forcing feeds for a dying patient

32. Individual Influences on Feeding Decisions • Comforting Aspects of Feeding • Human interaction • Natural “loving” care • Pacifying nature of oral stimulation • Satisfies ‘hunger’ behaviors • Consistent with often held aspects of professionalism • Avoiding harm?

33. If I Don’t Feed, Then What? • Questions about “starving” • Requires an exploration of meaning • Does dehydration affect perceived “hunger?” • Course of dying • Issue of “time” • Perspectives on “harm” • Risks/benefits of “forced” feeding • An issue of the goals of care

34. What Facts Should I Consider When Deciding? • Medical Facts • End-stage life-limiting or terminal diagnosis. • Refractory to continued cure-oriented interventions. • Human Value Facts • What are the goals/expectations of the patient and family? • What values, principles, or other constructs are at work? • Patient, family • Communities • Health Care Team • Institution

35. Four studies attest to a reluctance to WH/WD feedings by health care professionals (peds) 1990, Pediatric Section SCCM (42%) 1992 CNS (25%) 1994 Pediatric Housestaff (45%) 2003 Vanderbilt Children’s Hospital (23%) May reflect multiple considerations Symbolic Parental Societal children aren’t supposed to die a cure is just around the corner you can’t give up Language Starving Suffering Timing Prolonged dying Emotional Considerations

36. Language & Values Matter • ‘Best interests’ & ‘Quality of life’ • Relational capacity? • Cognitive ability? • Potential? • “Whose interests pertain?” • When there is a medically irreversible outcome, tell the family “We need to make a decision.” • Discontinue treatments that are harmful or have not proven beneficial (futility) • Withhold nutrition/hydration? • As any other LSMT • Share the decision

37. Language & Values Matter • Acceptable lives & ‘Quality of life’ • Any Life is “Sacred” • Family benefit • Hope…beliefs & expectations • “It is in God’s hands.” • “Giving up” • Young people aren’t supposed to die • Expect a miracle • “Starving the patient?” • Meaning • Suffering • Burden of guilt

38. Issues • Even if you accept that patients and families have the right to determination, your own actual participation—especially given the potent uncertainties & pluralities—can still evoke unsettling emotions and even doubt. • The fact of being unsettled is morally legitimate and may warrant clarification. • However, the simple fact of being unsettled does not legitimate resisting or swaying a patient or family decision.

39. Maintain communication with patient/family Be aware of the signs/symptoms & the time frame over which these will likely appear Respect differing perspectives Remove all therapies at once Shift focus of care to comfort Palliative care team, hospice, home-health Supportive environment Support psychosocial & spiritual needs Symptom management Pleasure feeds skin & mouth care pharmacologic & non-pharmacologic care What To Do If Not Feeding