Food - The four letter word in end of life care Prince Edward Island

1. Food - The four letter word in end of life care Prince Edward Island Palliative Care Conference June 13 2014 Katherine Murray BSN MA CHPCN(C) Joshua Shadd MD CCFP Assistant Professor Centre for Studies in Family Medicine

2. The blessings of team! Dr Joshua Shadd Kath Murray

3. Food can cause conflict and frustration… for family, staff… …and for the dying person

4. Introduction, the challenge “Simple truths of nutrition” The research to support it Ideas for talking with families CACS = Cancer Anorexia Cachexia Syndrome Though some research refers to cancer, the mechanism is similar in other progressive illnesses. Outline

5. Simple Profound truths of nutrition Dr Michael Downing • What a patient can eat and drink will become less. • Eventually both eating and drinking will become zero. • Stopping eating and drinking is natural to the dying process.

6. Simple Profound truths of nutrition Dr Michael Downing • What is nutritionally right at one stage may be very wrong at another. • Aggressive nutritional therapy in advanced disease often contributes to difficulty in symptom control. • Food can cause more discomfort than pleasure.

7. Dr Michael Downing Simple Profound truths of nutrition • What one likes is more important than what is ‘right’ or ‘of value’. • What works is not necessarily what one likes or what is ‘right’. • The atmosphere around eating is more important that what is ingested.

8. Thank-you so very much….. Since early May 2011 I have been watching my 97 year old mother-in-law slowly starving in a long-term care.  When I attempted to ask questions as to why she was not eating, I was treated as if I was asking questions I had no business to ask.  I even asked the Director of Care if there was some avenue or some type of Dementia which at some point dictates to the affected person "Thou Shall Not Eat!".  Letter…..

9. The answer she gave me was "Certainly NOT!"    That was in a meeting a week ago yesterday.  Since then I have been doing my own research on- line and have discovered that indeed as dementia progresses, the brain forgets the importance of food, can't recognize food, forgets how to chew, forgets how to swallow.  Then I read your article and have some further info to help me understand what is going on.  What a shame that no one on staff could sit down with us to educate us on how common this is near the end of life in a person with dementia.  Continued

10. My nursing experience was in acute care so how would I have known this element of dementia?................ I appreciate the Care magazine and always learn something.  Thanks.  MC - Retired LPN Continued

11. Tom Tom is an 84 year old retired Coast Guard officer. He was admitted to the lodge six months ago with advancing vascular dementia. His wife Phyllis visits daily. She arrives mid morning, participates in activities with him, and helps him with his lunch. They have one child – a daughter, Marianne.

12. Tom For the past month Tom has been less interested in activities, and has not been eating well. He seems more tired, has lost weight, and has a persistent cough. Phyllis tries encourages him to eat, and is disappointed when he does not eat. She is worried that when she is not there, that staff do not encourage him to eat as well as she can. Marianne the daughter is worried that he is loosing weight.

13. Tom “Dad will never complain, but I’m really worried about his appetite. Every day Mom brings him something to eat, and helps him with his lunch. When she is not here, he does not eat well. He is loosing weight. He was never a big man, but now he’s getting skinnier by the day! Isn’t there something we can do about this?”

14. Anorexia Anorexia is the loss of appetite, the decreased interest in food and eating. (Today’s discussion is concerning anorexia at end of life only!)

15. Cachexia Involuntary weight loss (>5% from baseline) with loss of muscle > fat. Common in advanced cancer and some other severe, progressive illnesses (e.g. COPD, CHF, AIDS)

16. Uncontrolled symptoms (pain, dyspnea, nausea) Fatigue Dry and/or sore mouth Difficulty/pain with swallowing Aversion to food odors/tastes S/E of meds - N/V, Constipation Psychological factors: depression, anxiety, stress Cognitive impairment Cancer Anorexia Cachexia Syndrome (CACS) Decreased Intake – Why?

17. Why won’t he eat?

18. It really IS all about cytokines….

19. CAUSES OF CACS Deconditioning

20. Systemic Inflammation & Appetite Systemic Inflammation • Neural and hormonal signaling between the brain and GI tract controlling appetite and gastrointestinal function ↓ Nutrient Intake • IL-1 • IL-6 • TNF-

21. Why won’t he eat?Translation… • Systemic inflammation causes a variety of different problems which tend to reduce people’s food intake. • The body’s reaction to the presence of tumor can directly reduce one’s appetite, • Dementia, and disease progression, (or cancer and cancer treatments) also have many other effects that indirectly impact food intake as well

22. “Why is he losing weight?”

23. Weight Balance = Intake – Expenditure Appetite & gastrointestinal motility ↓ Nutrient Intake Systemic Inflammation Nutrient Expenditure ↑ Metabolic rate and processes Tumor-produced factors • Inefficient energy use • Increased breakdown of protein & fat • Decreased making of protein •  cortisol •  muscle glucose uptake •  acute phase protein synthesis •  muscle protein synthesis •  proteolysis •  peripheral lipolysis • Proteolysis inducing factor • Lipid mobilizing factor

24. Inflammation produces changes which accelerate muscle breakdown, and impair muscle rebuilding. This becomes a vicious cycle (less muscle  less muscle-building hormone  less muscle) On top of that, muscle does not use its energy resources efficiently Then why is he losing weight?Translation…

25. “Are anorexia and cachexia always linked? Does one cause the other?”

26. GI Symptom Correlates of Cancer Anorexia Are anorexia and cachexia linked? Nausea Constipation Vomiting Belching Abdominal pain Smell changes Bloating Food aversions Indigestion Hiccups Abn. diurnal variations Taste changes Weight loss Early satiety 79% Yavuzsen, Supp Care Cancer, 2009

27. They usually occur together. They are really part of the same process. Decreased intake and increase spending of energy. However, one is not necessarily directly related to the other. Are anorexia and cachexia always linked? Does one cause the other?Translation…

28. “Is he starving?”

29. The Physiology of CACS vs. Nutritional Deficiency

30. Cachexia is different than starvation. In starvation, the body seeks to conserve energy and nutrients. In cachexia, the body spends them even faster than usual. So is he starving?Translation…

31. “Would “Ensure” or a feeding tube or an IV with food in it help?”

32. Among patients undergoing non-surgical cancer treatments: Parenteral nutrition - net harm Voluntary supplements - no effect on mortality Does supplemental nutrition affect clinical outcome? A Systematic Review Koretz, Am J Gastroenterology, 2007 “In summary, … little evidence was found for benefits ….in terminally ill cancer patients…” Enteral and Parenteral Nutrition in Terminally Ill Cancer Patients: A Review Dy, Am J Hospice Palliative Med, 2006 Supplemental Nutrition Doesn’t Help

33. Unfortunately, not much. Supplemental artificial nutrition (e.g. feeding tube) causes at least as much harm as good. “Would “Ensure, ”feeding tube or IV with food help?” Translation…

34. Parenteral Hydration in Patients With Advanced Cancer: A Multicenter, Double-Blind, Placebo-Controlled Randomized Trial Hydration at 1 L per day did not improve symptoms, quality of life, or survival compared with placebo. Does she need artificial hydration?

35. “Parenteral Hydration in Patients With Advanced Cancer: A Multicenter, Double-Blind, Placebo-Controlled Randomized Trial.” Eduardo Bruera et al. JCO Jan 1, 2013:111-118; Article Reference:

36. “Would medication help him gain weight?”

37. Pharmacotherapy for CACS

38. Cachexia is caused by a combination of many things therefore no single treatment will fix all the causes. Combining multiple medications may help, but we don’t know what would be most safe and effective. Megestrol and a steroid may increase his appetite and energy for the short term, but won’t increase his muscles or strength. “Would medication help him gain weight?” Translation…

39. “Does this mean that he will die sooner?”

40. People who have anorexia or cachexia or both have poorer survival than those who have neither. Lasheen, Supp Care Cancer, 2010 “Does this mean that he will die sooner?”

41. Both anorexia and cachexia are bad news. Whether he has one or both symptoms makes little difference. The survival appears to be about the same. If he had a good appetite and no weight loss, then he might live a few months longer…. it is less about what we do, and more about what is happening in the body. “Does this mean that he will die sooner?” Translation…

42. Anorexia Cachexia is a poor prognostic factor, and may contribute to the mechanism of death, but is not a cause of death. “Is he dying because he’s not eating?”

43. No, he is not eating because he is dying. “Is he dying because he’s not eating?”Translation…

44. Putting this in context…. Nourishment across the life span

45. “Appropriate nourishment across the life span” Let’s play: “Eating at the family reunion….” Setting the stage