2 "Everything Stops for Tea" Nutrition, Eating, and Palliative CareAnd so I guess we need to rectify the credentials.The title of my talk was chosen simply to reemphasize how significant a role is played by food, meals, and meal time. Although in health care it is not the case that everything stops for our sustenance and socializing, taking on nutrition usually involves a great deal more than mere energy repletion.I hope to address a number of issues today. Keeping in mind the broader context of “Ethical Issues in Nutrition Management of the Terminally Ill,” I’ll speak about some of the many psychosocial issues that arise from diminished PO intake in patients with end stage disease. I’ll speak of some of the reasons for this, and the inevitable loss of both weight and function commensurate with it.I’ll speak briefly (to an audience already aware) of the important distinction between cachexia and starvation, and of artificial nutrition, in particular the question of if/when PEG is appropriate in Palliative Care.Through it all, I will emphasize that in Palliative Care, and indeed in all of medicine, establishing Goals of Care is the most significant first and ongoing step.Ted St. Godard MA MD
3 “Let food be your medicine and let medicine be your food.” Hippocrates“Sex is good, but not as good as fresh, sweet corn.” Garrison KeillorFood equals health, as far back as Hippocrates. It’s not just your mother. Food equals pleasure, in a host of ways. It is, however, probable that Mr. Keillor was in his latter years when he made this comment.
4 Objectives Psycho-social aspects of eating and not eating “starving,” “wasting,” some patientsApproach to patients and familiesNutrition challenges in the gravely illCachexia versus Starvation (? Decreased PO = starvation)Role for Artificial NutritionYes, no, maybe so?“Palliative Perspective”Always need objectives.
5 I. Psychosocial issues “Nothing would be more tiresome than eating and drinking if [they were not] a pleasure as well as a necessity.” VoltaireEat, drink, and be merry.
6 I. Psychosocial issues Meals/eating highly “loaded” celebrations, milestones, happy times, sad times, memoriesMany or most patients with terminal illness ultimately are unable to eat enough to avoid weight loss and maintain activity levels
7 I. Psychosocial issues Patients Body image? Sexuality? Embarrassment, shame, guilt, frustrationWeaker and weaker, smaller and smaller“I’m wasting away…”“Loaded” for patients and families. Patient becoming weaker, losing more and more weight.
8 I. Psychosocial issues Families Frustration, anger LO weaker, smaller, frailer, but “won’t eat”Try harder, vicious circleConflict“We can’t just let her/him starve…”“Loaded” for patients and families. Patient becoming weaker, losing more and more weight.
9 I. Psychosocial issues “Starvation” We live in a world where this ought not to happenUnconscionable“Wasting”Inefficient, shameful, immoral?I think language is very important. “Wasting” is a word I try not to use. “Starvation,” however, comes up often, and it is useful to make clear the important distinction between “starvation” and cachexia.
10 I. Psychosocial issues Nutrition is a basic animal need Is feeding a fundamental component of care? A right?Eat, drink, and be merry
11 I. Psychosocial issues 38 male, metastatic esophageal Ca. Presented with pneumo-mediastinumPEGCachectic, ate (copiously) for months53 female, metastatic ovarian Ca., bowel obstructionObese, eating (copiously) around NGIncreasing emesis… “How will we feed her now?”Let’s look at a few patients, and see some of the issues that arise, and then move on to an approach that sometimes helps with these challenging issues.
12 I. Psychosocial issues 73 male, metastatic hepato-cellular Ca., Frail, bedbound, cachectic, icteric“Doctor, he no eat. Make him eat”53 female, metastatic breast Ca., bowel obstruction (multiple omental mets, abd/pelvic adenopathy)Looks well, ambulating“So now I just starve to death?”
13 II. Approach to patients/families This is a Picasso, circa Not what we usually expect when we think of Pablo, is it? And in the same way it might not meet our preconceived expectations, so Palliative Care is in many ways as active as passive, in spite of the often unspoken prejudices regarding “hand-holding and morphine.”
14 II. Approach to patients/families Goals of CareI strongly believe that the most important element in Palliative Care (if not all of medicine), is the establishment, monitoring, and ongoing modification of goals of care. Whether dealing with issues of pain and symptoms, infection management or other potentially life prolonging interventions (transfusions), or as in today’s discussion, with nutrition, patients, families, and care team need to be guided by the jointly established, and over-arching goals of care. “Maintain quality of life, avoid prolongation of dying” is in parentheses because I am aware that these goal are heavily loaded with my own beliefs/prejudices.(Maintain quality of life; avoid prolongation of dying)
15 II. Approach to patients/families WHO definition:Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life- threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
16 II. Approach to patients/families WHO definition:…improves quality of life of patients and their families……prevention and relief of suffering…..early identification,… assessment and treatment of…. problems, physical, psychosocial and spiritual.Emphasis on Sx management over cure. “Care beyond cure.” Affirmative obligation to the dying patient and his/her family. Not simply the absence of certain curative interventions. Physical, psychosocial, and “spiritual” symptoms. And importantly, intention is neither to hasten nor postpone death.
17 II. Approach to patients/families Palliative CareDeath“Active Treatment”Now, we’re all familiar with this so-called “old model,” where active treatment, sometimes called “aggressive,” is pursued until such time as it’s deemed “futile,” at which point the patient is “made palliative.”
18 II. Approach to patients/families Palliative CareDeath“Active Treatment”And because Dr. Harlos has been doing such a terrific job for the past decades, I expect most of us have seen this slightly modified model, arguably idealized, where the Palliative and “active” components overlap. And I think it’s important to point out here that one doesn’t always need the Palliative Care team to provide palliative care, and that what is more important that who provides the care is what the goals of care are.
19 II. Approach to patients/families Cure, restore function, prolong life, provide comfortA simple approach to “Goals of Care.” the goals vary along a continuum, and I’ve deliberately put a small line on the bottom, suggesting that where one locates oneself on the continuum can change over time, can fluctuate. Of course, using lines is slightly inaccurate, as the process is not linear.
20 II. Approach to patients/families CureRestore functionProlong life“Heal often, cure sometimes, comfort always.” I think it’s Osler.Comfort always
21 III. Nutrition Challenges in PC Failure to achieve balanceDecreased PO intakeAnorexia, xerostomia, altered taste/smell, odyno/dysphagiaDecreased absorptionAltered energy utilizationSo with those ideas in mind, a quick look at some of the nutrition challenges we face in end stage disease. And given the nature of the present audience, I am going to go very quickly through this.
22 III. Nutrition Challenges in PC Inadequate ingestion“Developed” countries: medical reasonsWorldwide: lack of foodAn ethical aside, as it were. I hope we all enjoyed our breakfasts.
23 1. Decreased PO intake Anorexia (loss of appetite) Multi-factorial “Cytokines”: central (hypothalamic) and peripheral (via vagus nerve) influencesHuge frustration for families, source of much tensionI do want to spend a bit of time on anorexia, because it is such a huge problem for families to cope with.
25 Anorexia (loss of appetite) Approach:Symptom control (nausea, pain)Meal selection, timing, portion/presentationAvoid/reduce conflict (eat, drink, be merry): “eat what, where, when, as much/little as you want”
26 4. Pharmacology in anorexia Tx Progestational agents: MegestrolCorticosteroids: Dexamethasone
28 4. Pharmacology in anorexia Tx Appetite stimulants may increase intake, body weight, and quality of life, but they do not affect prognosis in the terminally illDy, M. “Enteral and Parenteral Nutrition in Terminally Ill Cancer Patients: a Review of the Literature.” American Journal of Hospice and Palliative Medicine. 2006; 23 (5):But depending on the goals, we sometimes use meds.
29 Simple approach, according to these bovines Simple approach, according to these bovines. But what if you simply can’t eat?
30 3. Altered energy metabolism 2. Decreased absorptionNauseaEmesisDiarrheaSurgical/anatomical changes3. Altered energy metabolismEmesis, diarrhea, obstruction, anatomical/surgical alterations in GI tract. And in terms of number 3 here, let’s look just briefly at some of the underlying pathophysiology of cachexia.
31 IV. Cachexia versus Starvation Starvation: pure protein/energy deficiency (under-nutrition)Cachexia: cytokine-induced wasting of protein and energy stores, caused by effects of diseaseMalignancy, COPD, ESRD, CHF, AIDS, RARemarkably resistant to hyper-caloric feedingThomas, D. “Distinguishing Starvation from Cachexia.” Clinics in Geriatric Medicine. 2002; 18:
32 IV. Cachexia versus Starvation Biochemical markers represent nutritional status or illness severity?Acute-phase cytokine responseStrong inverse correlation between IL-2R and albumin, pre-albumin, cholesterol, HgbCommon pathway to reduction in albumin, etc. may be cytokine induction, rather than absence of nutrientsChicken or egg conundrum. That is, when we check, say serum albumin, and it’s low, is it because of poor nutrition or cachexia?Thomas, D. “Distinguishing Starvation from Cachexia.” Clinics in Geriatric Medicine. 2002; 18:
33 IV. Cachexia versus Starvation AppetiteLate suppressionEarly suppressionBMINot predictive of mortalityPredictive of mortalityAlbuminLow in late phaseLow in early phaseCholesterolMay remain normalLowTotal lymphocyte countLow, responds to re-feedingLow, no response to re-feedingCytokinesLittle dataElevatedInflammationUsually absentPresentWith re-feedingReversibleResistantSo let’s look at some of the distinctions. But what if the goals of care are such that we are still pursuing more than just comfort? Or what if it happens to be that a case can be made that artificial nutrition is a comfort measure? Let’s speak a bit about artificial nutrition.Thomas, D. “Distinguishing Starvation from Cachexia.” Clinics in Geriatric Medicine. 2002; 18:
34 V. Role of Artificial Nutrition Ethical PrinciplesAutonomyBeneficenceNon-maleficenceInformed consentBeauchamp and Childress. Principles of Biomedical Ethics. New York: Oxford University Press (4th Ed.)
35 V. Role of Artificial Nutrition Informed consent. Patient/surrogate:Is able to communicate consistent preferenceUnderstands risks, benefits, and alternatives“Appreciates” the informationUses rational thinking to arrive at decisionAnd of course there are other considerations if dealing with a surrogate.Beauchamp and Childress. Principles of Biomedical Ethics. New York: Oxford University Press (4th Ed.)
36 V. Role of Artificial Nutrition Nutrition is a basic animal needIs feeding a fundamental component of care? A right?Eat, drink, and be merry
37 V. Role of Artificial Nutrition Artificial, specialized nutritional support is no different from any other life sustaining medical therapy that supports bodily function, such as antibiotics, oxygen therapy, or dialysis.Not offering it is ethically acceptable if benefits do not outweigh the risks for a particular individual.Just some important general things to point out. Because we’re talking about feeding, important to make clear that…McClave , S., Ritchie, C. “The Role of Endoscopically Placed Feeding or Decompression Tubes.” Gasteroenterology Clinics of North America. 2006; 35:
38 V. Role of Artificial Nutrition There is no ethical or legal difference between withholding a … feeding tube versus placing the feeding tube and then later removing itGanzini, L. “Artificial Nutrition and Hydration at the End of Life: Ethics and Evidence.” Palliative and Supportive Care. 2006; 4:
39 V. Role of Artificial Nutrition Several Groups of Potential BeneficiariesMalignant diseaseAcute CVADementiaNeurodegenerative diseasesAnd I’m not even going to speak about people in PVS, for whom there almost certainly is survival benefit. Quality?
40 V. Role of Artificial Nutrition Two Potential BenefitsProlong lifePalliate: improve comfort, enhance quality of life (for patients and their care-givers/loved ones)
41 V. Role of Artificial Nutrition Patients with MalignanciesDespite increased nutrient delivery, trials show disappointing results in improving clinical outcomeImprovements in biochemical markers inconsistently correlate with objective clinical benefitsThis is a bit of a generalization, as we will see. Cachexia versus starvationThomas, D. “Distinguishing Starvation from Cachexia.” Clinics in Geriatric Medicine. 2002; 18:
42 V. Role of Artificial Nutrition Patients with Malignancies?survival benefit if PEG in early head and neck cancers (tolerate treatments better)There seems to be some survival benefit….Ganzini, L. “Artificial Nutrition and Hydration at the End of Life: Ethics and Evidence.” Palliative and Supportive Care. 2006; 4:
43 V. Role of Artificial Nutrition Patients with MalignanciesLittle evidence was found for benefits from enteral or parenteral nutrition in terminally ill cancer patients, other than for those with mechanical gastrointestinal tract obstructionMy emphasisDy, M. “Enteral and Parenteral Nutrition in Terminally Ill Cancer Patients: a Review of the Literature.” American Journal of Hospice and Palliative Medicine. 2006; 23 (5):
44 V. Role of Artificial Nutrition HungerOften not notedAmeliorated usually with small amounts food/drinkDy, M. “Enteral and Parenteral Nutrition in Terminally Ill Cancer Patients: a Review of the Literature.” American Journal of Hospice and Palliative Medicine. 2006; 23 (5):
45 V. Role of Artificial Nutrition Acute CVA with Dysphagia↑ Survival↓ MorbidityGanzini cites 3 “well-designed studies” showing…. And one could be forgiven for suspecting that this type of patient would not end up on a Palliative Care ward. But we need to remember that, in spite of what may to us seem an obviously dying patient, “we can’t just let her/him starve.”Ganzini, L. “Artificial Nutrition and Hydration at the End of Life: Ethics and Evidence.” Palliative and Supportive Care. 2006; 4:
46 V. Role of Artificial Nutrition Acute CVA with DysphagiaRCT compared tube feeds within 7 days of admission versus no tube feeding for more than 7 daysEarly tube feeding associated with NS reduction in risk of death (ARR 5.8 %)↑ Survival ? offset by 4.7 % excess of survivors who had poorer outcomesDoes early feeding keep patients alive who are more severely disabled? Who might otherwise have died?Dennis, Lewis, Warlow, C. “Effect of Timing and Method of Enteral Tube Feeding for Dysphagic Stroke Patients.” Lancet. 2005; 26 (365):
47 V. Role of Artificial Nutrition Dementia34 % pts. with dementia or cognitive impairment have PEGsPrevent aspiration, heal/preven skin ulcers, prolong lifeEvidence equivocal at best on all countsMcClave , S., Ritchie, C. “The Role of Endoscopically Placed Feeding or Decompression Tubes.” Gasteroenterology Clinics of North America. 2006; 35:
48 V. Role of Artificial Nutrition DementiaPatients with dementia who are so disabled as to stop eating have poor prognosis even with PEGPEG in demented patients huge risk factor for restraintsGanzini, L. “Artificial Nutrition and Hydration at the End of Life: Ethics and Evidence.” Palliative and Supportive Care. 2006; 4:
49 V. Role of Artificial Nutrition Neurodegenerative diseaseALSCognition usually spared10 – 20 % 5-year survival without artificial ventilation and nutritionWith support, lifespan can be extended “indefinitely”Ganzini, L. “Artificial Nutrition and Hydration at the End of Life: Ethics and Evidence.” Palliative and Supportive Care. 2006; 4:
50 V. Role of Artificial Nutrition Neurodegenerative diseasePEG in ALSImproves nutritionMakes “eating” easier (lessens fatigue)Decreases time spent feedingAllays fears of choking? Improved QOLGanzini, L. “Artificial Nutrition and Hydration at the End of Life: Ethics and Evidence.” Palliative and Supportive Care. 2006; 4:
51 V. Role of Artificial Nutrition Neurodegenerative diseasePEG in ALSMortality benefit?Survival increased only in patients where PEG inserted earlyFVC < 50 % predicted increases risk mortalityThe evidence does not seem strong, but in the few studies, earlier placement seemed to bode better for survival than relatively late.Ganzini, L. “Artificial Nutrition and Hydration at the End of Life: Ethics and Evidence.” Palliative and Supportive Care. 2006; 4:
52 V. Role of Artificial Nutrition Several Groups of Potential BeneficiariesMalignant diseaseAcute CVADementiaNeurodegenerative diseasesTwo Potential BenefitsProlong lifePalliate: improve comfort, enhance quality of life (for patients and their care-givers/loved ones)There appear to be some differences both in terms of survival and QOL, depending on both disease and stage of disease. And therefore, as is often the case, we need a case-by-case analysis. What can perhaps be addressed, if we return to the discussion of Goals of Care, is the notion that a particular intervention may be more comforting to family members than to patients. And so, as always, it’s important to know who we’re treating.
53 VI. RecapIssues surrounding eating and nutrition come to play a very significant role in the lives of people with most end stage illnessesOften more difficult for families than patientsPotential source of much conflict
54 VI. RecapDecreased PO intake, and altered ability to metabolize nutrients effectively is etiologically complexDepending on goals of care, there sometimes is a role for medication and/or artificial nutrition“Treatment” must always and everywhere take into considerations of goals of care
55 Edible: “Good to eat and wholesome to digest; as a worm to a toad, a toad to a snake, a snake to a pig, a pig to a man, and a man to a worm.” Ambrose Bierce