Nutritional Considerations at the End of L ife

1. Nutritional Considerations at the End of Life Kevin B. Mathews MD FAAFP Medical Director, Palliative Care Consultation Service Clinical Assistant Professor of Family Medicine SUNY Upstate Medical University

2. Objectives • Define Palliative Care and its role in assisting patients and families • List the ethical, legal and social issues that impact upon nutritional decisions • Discuss the syndrome of imminent death • Identify common nutritional options for patients with anorexia and swallowing difficulty

3. Palliative Care “Palliative care addresses physical, emotional, social and spiritual pain to achieve the best possible quality of life for patients and families. It provides a compassionate, comprehensive team approach for those dealing with a serious illness regardless of diagnosis, prognosis or treatment.”

4. Palliative Care Centers for Medicare and Medicaid Services: • Palliative care means patient and family centered care that optimizes quality of life by anticipating, preventing, and treating suffering. • Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social and spiritual needs to facilitate patient autonomy, access to information, and choice. • Eligibility based on need NOT prognosis 73 FR 32204, June 5, 2008 Medicare Hospice Conditions of Participation - Final Rule

5. Palliative Care Hospice Care vs. Palliative Care • Some treatments and medications may be covered by Medicare • Some treatments and medications may be covered by Medicaid • Some Tx/Meds. may be covered by private insurance. • There is no “palliative care” package Hospice Care Medicare pays all charges related to hospice In 47 states, Medicaid pays all charges related to hospice Most insurance plans have a hospice benefit Medicare and Medicaid hospice benefits are package deals

6. Palliative Care Hospice Care vs. Palliative Care • DNR NOT required for participation • Anyone with a serious illness, regardless of life expectancy • You may receive palliative and curative care at the same time • Duration of palliative care depends upon your care needs and insurance coverage Hospice Care Patient’s life expectancy measured in mos. not years Tx./meds for Sx. relief provided by hospice Length of care depends upon prognosis of months, not years DNR NOT required for participation

7. Palliative care is a continuum

8. MOLST Page 1: DNR • Complete Section A, B, C for DNR • Section D: Advance Directives Page 2: Life-Sustaining Treatment Page 3 and 4: Renew/Review Supplemental Documentation Forms for DNR: Adult and Minor www.compassionandsupport.org

9. Get in the habit of asking . . . • "Would I be surprised if this patient died in the next 6 months to a year?” • For those "sick enough to die," prioritize the patient's concerns: • advance planning • symptom relief • family support • continuity • spirituality

10. Syndrome of Imminent Death • Early • Bed bound, • loss of interest and/or ability to drink/eat • Cognitive changes: increasing time spent sleeping and/or delirium • Mid • Further decline in mental status and obtundation (slow to arouse with stimulation; only brief periods of wakefulness) • “Death Rattle” pooled oral secretions that are not cleared due to loss of swallowing reflex • Late • Fever from aspiration pneumonia • Altered respiratory pattern – apnea, hyperpnea or irregular breathing

11. Swallow Studies, Tube Feedings and the Death Spiral 1. Hospital Admission for complication or predictable end-organ failure due to primary illness (urosepsis/dementia) 2.Inability to swallow and/or direct evidence of aspiration and/or weight loss with poor po intake 3.Swallow evaluation followed by recommendation for non-oral feeding either due to aspiration or inadequate intake 4.Feeding tube (PEG) placed leading to increasing agitation leading to patient removal or dislodgement of feeding tube 5.Re-insertion of feeding tube; wrist restraints placed 6. Aspiration pneumonia 7. IV antibiotics plus oximetry

12. Swallow Studies, Tube Feedings and the Death Spiral • Repeat Steps 4 – 6 one or more times • Family Conference 10. Death

13. Social Context • Food = Life • Starvation = Death • 24/7 News Cycle • Documentation • Calorie count • Daily weights • Swallowing Evaluation • Video Studies

14. Legal Issues • Supreme Court Decisions • Right to Die • Right to Refuse Treatment • Right to Withhold or Withdraw Treatment • No constitutional right to physician assisted suicide. States to decide. • Oregon • Washington

16. Legal Issues • Living Will • Clear and Convincing Evidence • Health Care Proxy • Artificial Nutrition and Hydration • Selection of an agent • NY State Family Healthcare Decisions Act • Surrogate decision makers • Developmentally Disabled • MOLST

17. MOLST Page 1: DNR • Complete Section A, B, C for DNR • Section D: Advance Directives Page 2: Life-Sustaining Treatment Page 3 and 4: Renew/Review Supplemental Documentation Forms for DNR: Adult and Minor www.compassionandsupport.org

18. Recent Legislation related to Palliative Care Palliative Care Information Act: • Applies to patients with terminal illnesses (diseases and conditions reasonably expected to cause death within 6 months) • Providers Palliative Care Access Act: • Applies to patients with “advanced, life-limiting illnesses or conditions” • Institutions

19. Traditional Principles of Medical Ethics • Respect for life, health and the dignity of the dying • Duty to pursue proportionate medical care (ethically adequate medical care) • Exercise of responsible freedom (autonomy) • Respect for the symbolic, cultural, spiritual, and/or religious meanings of care

20. The Principles of Biomedical Ethics • Autonomy • Beneficence • Non-Maleficence • Justice

21. Long Term Artificial Hydration and Nutrition TPN, PEG and IV’s • Risks and benefits vary in the individual • depend on age, overall health status, goals for care, timing and course of disease • Often hard to predict outcome • Decision based upon goals of care • When someone is dying, AHN • Does not prevent aspiration • Does not improve comfort • Does not change prognosis or prevent dying

22. Long Term Artificial Hydration and Nutrition TPN, PEG and IV’s • Ethically can be discontinued • When burdens outweigh benefits • patient repeatedly pulls out tube • quality of life deteriorates • recurrent infection • lack of improvement in labs • excessive agitation • terminal condition • recurrent aspiration • diarrhea

23. Patient Centered Care • Provide What Patients and Families Want • Quality end-of-life care • receive pain & symptom management • avoid prolonging the dying process • achieve a sense of control • relieve the burden on loved ones • strengthen the relationship with loved • Provide What Patients and Families Need • Compassion • Acceptance • Clear information that allows caregivers to determine the goals of care • Identification of surrogate decision maker and preferences

24. United States Catholic Bishops Ethical and Religious Directives for Catholic Health Services (ERD) The “expense” of mechanical ventilation, tube feeding and other means to prolong life need to be measured in emotional, physical and spiritual costs to the patient and the community as a whole. The fact that a technological advancement prolongs life does not make it beneficial. This needs to be reviewed in light of each patient’s circumstance.

25. Treatment Choices • Swallowing Studies • IV Hydration • “Flexi-Flow” • PEG • “J Tube” Feedings • “TPN”

26. Swallowing Studies • Bedside • Comprehensive Feeding and Swallowing History • Oral exam • Trial swallows of various consistencies • Instrumental • Require the patient to be alert, cooperative and able to follow simple commands

27. Swallowing Studies • Potential Indications • Acute Stroke or other neurological condition affecting oral motor function • Tracheostomy or recent endotracheal extubation • Change in oropharyngeal anatomy • Observed Difficulty with Swallowing • Recurrent URIs or Pneumonias • Reduced Oral Food Intake • Unexplained Weight Loss of Fever

28. Contraindications for Instrumental Swallowing Evaluation • Imminent Death – expected within 2 weeks • Death Expected within weeks from any progressive terminal illness • Reduced level of arousal • Coma • Obtundation

29. Swallowing Studies • Value is in providing guidance regarding swallowing techniques and optimal food consistencies for populations amenable to instruction • Lack Sensitivity (65%) and Specificity (67%) in predicting who would develop aspiration pneumonia within one year • Croghan,J et al Dysphagia 1994;9:141-146

30. IV Hydration • Considered a Medical Intervention • No legal or ethical imperative to provide medical intervention unless benefits outweigh burdens

31. IV Hydration • Dehydration can lead to pre-renal azotemia and accumulation of toxic metabolites (opioids – myoclonus, delirium, seizures) • There is no evidence that fluids prolong the dying process • Providing hydration can maintain the appearance of “doing something”, even though there may be no medical value and ease anxiety around the time of death

32. IV Hydration • Parenteral fluids may prolong the dying process • Comatose patients do not experience symptom distress • Less urine/voiding/catheters • Less GI secretions/nausea/vomiting • Less respiratory tract secretions/cough/ edema • Dehydration may reduce distressing edema/ascites • Dehydration may be a natural anesthetic to ease the dying process • Parenteral hydration may be uncomfortable and limit patient mobility

33. PEG • To Prevent Aspiration Pneumonia • Three retrospective cohort studies comparing patients with and without feeding tubes demonstrated no advantage to tube feedings for this purpose • Reduction in chance of pneumonia suggested for non bed-ridden post stroke patients in one prospective, non-randomized study. For bed ridden post stroke patients no reduction was observed

34. PEG • Life Prolongation via Caloric Support • 15-25% in hospital mortality • Predictors of early mortality: high age, CVA, dementia, cancer (except early head/neck), disorientation, low albumin • 60% one year mortality • Data strongest for patients with reversible illness in a catabolic state (sepsis) • Data is weakest in advanced cancer • Weight stabilization or gain • Cohort studies in non-randomized retrospective or prospective studies, no survival advantage between tube fed and hand fed cohorts has been demonstrated

35. PEG • Life Prolongation via Caloric Support • Patients with good functional status and proximal GI obstruction due to cancer • Patients receiving chemotherapy/XRT involving proximal GI tract • Selected HIV patients • ALS patients

36. PEG • Enhancing Quality of Life • Where true hunger and thirst exist (proximal GI obstruction) • Most actively dying patients do not experience hunger or thirst • Dry mouth is a common problem not related to hydration status • Pleasure of eating is denied

37. PEG • Ensure that there is true informed consent prior to placement of a feeding tube. Families must be given alternatives (hand feeding, comfort measures) along with discussion of goals and prognosis. • Assist families by providing information and a clear recommendation for or against the use of a feeding tube. Families who decide against a feeding tube can be expected to second guess their decision and need continued support • If a feeding tube is placed, establish clear goals (improved function) and establish a timeline for re-evaluation to determine if goals are being met (2-4 weeks)

38. Summary • Palliative Care • Goals of Care • Pain and Symptom Control • When the patient and family are ready • Interdisciplinary Family Meeting • Autonomy • Informed Consent • Benefits/Risks • Family and Patient Centered Care • Thanks to EPERC and “Fast Facts”