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Nutrition and Hydration Near the End of Life
The document discusses continuing education opportunities provided by VITAS Healthcare related to nutrition and hydration for hospice patients, detailing the ethical framework, benefits, burdens, and recommendations surrounding artificial nutrition and hydration (ANH). It highlights the financial impact of hospice care on Medicare and the role of hospice in improving quality of life for patients, particularly those with advanced dementia. Lastly, it emphasizes the importance of shared decision-making and explores complications related to tube feeding in the end-of-life care context.
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Nutrition and Hydration Near the End of Life
- 1. Nutrition and HydrationNear the End of Life
- 2. CE Provider Information VITASHealthcare® programs are provided CE credits for their Nurses/Social Workers and Nursing Home Administrators through: VITAS Healthcare Corporation of Florida, Inc./CE Broker Number: 50-2135. Approved By: Florida Board of Nursing/Florida Board of Nursing Home Administrators/Florida Board of Clinical Social Workers, Marriage and Family Therapy & Mental Health Counseling. VITAS Healthcare® programs in Illinois are provided CE credit for their Nursing Home Administrators and Respiratory Therapists through: VITAS Healthcare Corporation of Illinois, Inc./8525 West 183 Street, Tinley Park, IL 60487/NHA CE Provider Number: 139000207/RT CE Provider Number: 195000028/ Approved By the Illinois Division of Profession Regulation for: Licensed Nursing Home Administrators and Illinois Respiratory Care Practitioner. VITAS Healthcare®, #1222, is approved to offer social work continuing education by the Association of Social Work Boards (ASWB) Approved Continuing Education (ACE) program. Organizations, not individual courses, are approved as ACE providers. State and provincial regulatory boards have the final authority to determine whether an individual course may be accepted for continuing education credit. VITAS Healthcare maintains responsibility for this course. ACE provider approval period: 06/06/2021 – 06/06/2024. Social workers completing this course receive 1.0 ethics continuing education credits. VITAS Healthcare® Corporation of California, 310 Commerce, Suite 200, Irvine, CA 92602. Provider approved by the California Board of Registered Nursing, Provider Number 10517, expiring 01/31/2023. Exceptions to the above are as follows: AL: No NHAs, DE: No NHAs, DC: No NHAs, GA: No NHAs, KS: No NHAs, NJ: No NHAs, OH: No NHAs, PA: No NHAs, TX: No NHAs, VA: No NHAs, WI: No NHAs and Nurses are not required – RT only receive CE Credit in Illinois.
- 3. Goals • Describe theethical framework and practical application of artificial nutrition and hydration (ANH) for hospice patients • Help clinicians understand the specific types, risks, benefits, burdens, and complications of ANH • Provide evidence-based answers to common questions about ANH for patients who are nearing the end of life • Explore the recommendations of leading care organizations about ANH • Provide supportive alternatives for patients as they near the end of life
- 4. Objectives • Apply ethicalprinciples to decisions surrounding artificial nutrition and hydration (ANH) near the end of life • Identify the benefits, burdens, and harms of tube feeding (TF) in persons with advanced dementia • Recognize the benefits, burdens, and harms of parenteral hydration in persons near the end of life
- 5. Ethical Framework • Beneficence:Promote patient well-being • Autonomy: Respect patient self-determination • Nonmaleficence: Do no harm • Justice: Protect vulnerable populations and provide fair allocation of resources
- 6. Reinforcing Hospice FactsTrue/False Hospice discontinues all medications and treatments. False. Patients can continue treatments that provide symptom relief and improve quality of life. • For example, a patient with advanced lung disease who is currently on inhaler therapy that allows them to breathe better can continue this therapy while receiving hospice care.
- 7. Hospice Providers: ComplexModalities & Concurrent Therapies Nutritional support/counseling •SQ/IV hydration •Education on diet modification, feeding techniques, aspiration precautions PEG tube management • Education on tube use • Monitor and treat site infection Management of dementia-related disruptive behaviors • Protocol-driven processes to ensure appropriate psychotropic prescribing Skin integrity • Pressure ulcer prevention and management: – Pressure-relieving mattresses and supplies • Wound care: – Proactive coordination with clinical team of appropriate treatments – Intensive pain management Treatment of infection* •Antibiotic support Therapy services • PT • OT/speech • RT
- 8. • Initiating atreatment does not mandate its continued use until the patient dies • Availability of a treatment does not mandate its use • To forgo or to withdraw a treatment is usually ethically and legally equivalent Withholding and Withdrawing Basic Need or Medical Intervention
- 9. Burdens and BenefitsThrough Shared Decision-Making to Delineate Goals of Care (GOC) • Diagnosis • Prognosis • Beliefs and values • Quality of life • Goals of care • Medical indications for treatment
- 10. Prognostication and theMedicare Hospice Benefit • The Medicare Hospice Benefit provides comprehensive care for patients with a prognosis of six months or less if the illness runs its normal course • This benefit covers 100% of care costs related to the terminal diagnosis To be eligible for the Medicare Hospice Benefit, the patient must: • Be eligible for Medicare Part A • Opt for comfort-focused palliative care over curative care • Receive certification by the attending physician and the hospice medical director or team physician that the patient's life expectancy is six months or less • Be re-certified every 90-180 days to maintain eligibility
- 11. *To be eligibleto elect hospice care under Medicare, an individual must be entitled to Part A of Medicare and be certified as being terminally ill. An individual is considered to be terminally ill if the medical prognosis is that the individual’s life expectancy is 6 months or less if the illness runs its normal course. Only care provided by (or under arrangements made by) a Medicare certified hospice is covered under the Medicare hospice benefit. The hospice admits a patient only on the recommendation of the medical director in consultation with, or with input from, the patient's attending physician (if any). NORC at the University of Chicago (2023). Value of Hospice in Medicare. Available at: https://www.nhpco.org/wp-content/uploads/Value_Hospice_in_Medicare.pdf Financial Impact: Total Cost of Care Comparison by Disease State and Hospice Use in Last Year of Life* • Hospice care saved Medicare approximately $3.5 billion for patients in their last year of life • Those patients with hospice stays of ≥ 6 months* yielded the highest percentage of savings – For patients whose hospice stays were between 181-266 days, total cost of care was almost $7K less than non-hospice users – Hospice patients with stays of > 266 days spent approximately $8K less than non-hospice users Spending is greater than Spending is less than non-hospice users non-hospice users No Difference / Not Statistically Significant Disease Group No Hospice Hospice < 15 Days 15 – 30 31 – 60 61 – 90 91 – 180 181 – 266 > 266 ALL $67,192 4% -5% -9% -12% -14% -10% -12% Circulatory $66,041 7% -4% -8% -10% -11% -8% -10% Cancer $76,625 10% -1% -6% -9% -13% -14% -20% Neuro- degenerative $61,004 12% -6% -9% -11% -11% -5% -4% Respiratory $77,892 -2% -11% -14% -17% -19% -18% -22% CKD/ESRD $82,781 1% -14% -21% -24% -24% -23% -27%
- 12. Earlier Hospice AccessImproves Outcomes for People Living With Dementia 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Excellent quality of care Pain needs managed Breathing managed Anxiety of sadness managed Personal care needs Enough spiritual support Goal-consistent care Always treated with respect Patient or family input Family always informed Care coordinated Late (3-day) transition No hospice last month of life • Research continues to demonstrate the value of hospice in people living with dementia • Hospice-enrolled people living with dementia had a higher-quality of life compared to those without hospice • End-of-life transitions (e.g., hospitalizations, ED visits, etc.) were significantly lower for hospice enrollees compared to those who were not • Hospice beneficiaries saw a cost savings of $670 in the last month of life compared to non-hospice users
- 13. Time-Limited Trials • Maybe considered when burden and benefit of treatment are uncertain • Delineate end points clearly • Ceasing ineffective or burdensome treatment may be preferable to no offering at all • Fears of withdrawal should not prohibit time-limited trials – Example: Time-limited trial of intravenous (IV) fluids to see if delirium resolves
- 14. Artificial Nutrition andHydration (ANH) Yes • Tube alimentary tract – PEG – NG – PEJ • Needle into vein or under skin No • Assisted oral feeding – Spooning – Syringing
- 15. When Can ANHBe Beneficial? • Cancer with bowel obstruction – Good functional status – Total parenteral nutrition (TPN) has demonstrated improved quality of life and possibly life prolongation • Stroke with a good prognosis – Often unclear during acute phase – Feeding tubes are often placed as part of a time-limited trial • Bottom line: Use of artificial nutrition and hydration in many palliative care patients may be limited, yet risks and treatment burdens are substantial
- 16. Tube Feeding forPatients With Advanced Dementia
- 17. Case Study ofSH • 83-year-old female who was diagnosed six years ago with advanced Alzheimer’s dementia • Admitted from home to hospital with pneumonia • Minimally verbal • Fair appetite with some weight loss over last six months • Instrumental activities of daily living (IADL) dependent • ADL baseline: Able to walk from the chair to the bed with a walker and self-feed with her hands; incontinent of urine and stool
- 18. Case Study (cont.) •Medications: – Lisinopril – Metoprolol – Lipitor – Aricept – Ketoconazole • Lives with daughter, who is primary caretaker • Essentially homebound; patient not seen a physician in several years
- 19. Hospital Course • Antibioticsand IV fluids initiated • Poor oral intake • Increased confusion and sleepiness (delirium) • ADL now: Not able to get out of bed without assistance, needs to be fed, incontinent bladder and bowel • Should we put in a feeding tube?
- 20. Natural History ofDementia ADL Dependency Death Low Time (Slow decline) High Hospice Eligible FAST 7a or 7C plus Disease-related complication within the last several months Disease-related complications include, but are not limited to: • UTI • Sepsis • Febrile episode • Delirium • Pneumonia • Hip fracture • Eating difficulty or dysphagia • Dehydration • Feeding tube
- 21. Tube Feedings forPatients With Alzheimer’s • For patients with end-stage dementia, comfort feeding (CF) by hand is preferable to tube feedings • CF aligns with comfort, provides social interactions, and avoids complications of tube feedings • CF order can provide steps to ensure a patient’s comfort • Patients find the effort to eat or drink draining or unwelcome; they should not be pressured to make this effort • Symptoms of dry mouth and thirst can be alleviated with mouth care
- 22. Clinical Complications 6-Month Mortality Eating problem 39% Febrileepisode 45% Pneumonia 47% • Median survival: 478 days • Probability of death within 6 months: 24.7% • Died within 18 months: 55% 1Mitchell, S., et al. (2009). The Clinical Course of Advanced Dementia. New England Journal of Medicine, 361(16), 1529-1538. 2Shega, J., et al. (2008). Patients Dying with Dementia: Experience at the End of Life and Impact of Hospice Care. Journal of Pain and Symptom Management, 35(5), 499-507. Prognostication Factors and Hospice Eligibility • Overall mortality and the cumulative incidences of pneumonia, febrile episodes, and eating problems among nursing home residents with advanced dementia (3/6 ADLs)1 Evidence supports the benefits of hospice for patients with dementia and their caregivers2 Patient • 50% reduction in hospitalizations • More likely to die at home • Greater satisfaction with care • Better pain and symptom management • Fewer care transitions Caregiver • Less depression and anxiety • Better health
- 23. Arcand, M. (2015).End of life issues in advanced dementia. Canadian Family Medicine, 61(4), 330-334. Antibiotics • Sometimes, antibiotics are prescribed for end-stage pneumonia to increase comfort, even when death is imminent • Withholding might be appropriate if the goal of care is symptom control without life prolongation
- 24. Does not recommendpercutaneous feeding tubes in patients with advanced dementia. Instead, offer oral assisted feeding. Does not recommend percutaneous feeding tubes in patients with advanced dementia. Instead, offer oral assisted feeding. Does not recommend percutaneous feeding tubes in individuals with advanced dementia. Instead, offer oral assisted feeding. Industry Organization Recommendations
- 25. Marcolini, E., etal. (2018). History and perspective on nutrition and hydration at the end of life. Yale Journal of Biology & Medicine, 2(91), 173-176. Caregiver’s Perspective • Feeding tubes are inevitable • There are no alternatives • Awareness of only procedural risk(s) • Unclear about the patient’s prognosis • Expect tube feeding will improve comfort, nutrition, and longevity
- 26. Questions Generated Do feedingtubes… • Prevent aspiration pneumonia?
- 27. Do Feeding TubesPrevent Aspiration Pneumonia? • No randomized controlled trial of the intervention has been done • No data shows feeding tubes decrease the risk of aspiration pneumonia • Patients can still aspirate oral secretions • Feeding tubes are not shown to reduce the risk of regurgitated gastric contents
- 28. Lembeck, M., etal. (2016). The role of IV fluids and enteral or parenteral nutrition in patients with life limiting illness. The Medical Clinics of North America, 100(5), 1131-1141. Lack of Healthcare Provider Education • 500 PCPs surveyed • 75% of physicians thought that PEG tubes decreased the risk of aspiration • 90% thought that total enteral nutrition (TEN) in advanced dementia improved nutritional status • Most of the participants thought that tube feeding (TF) decreased the risk of pressure ulcers
- 29. Lembeck, M., etal. (2016). The role of IV fluids and enteral or parenteral nutrition in patients with life limiting illness. The Medical Clinics of North America, 100(5), 1131-1141. Actively Dying Patients Benefit Burden Address patient/family preferences Increased secretions Address spiritual/religious preferences Edema/anasarca Prevent dehydration Loose stool Benefits vs. Burdens of IV Fluids
- 30. Lembeck, M., etal. (2016). The role of IV fluids and enteral or parenteral nutrition in patients with life limiting illness. The Medical Clinics of North America, 100(5), 1131-1141. Why Tube Feeding May Not Decrease Aspiration Pneumonia • Cricopharyngeal incoordination • Decreased esophageal motility • Altered esophageal sphincter tone • Impaired gastric emptying • Ineffectiveness of elevation of head of bed
- 31. Questions Generated Do feedingtubes… • Prevent aspiration pneumonia? • Prevent malnutrition and improve functional status?
- 32. Callahan, C., etal. (2000). Outcomes of percutaneous endoscopic gastrostomy among older adults in a community setting. Journal of the American Geriatrics Society, 48(9), 1048-1054. Studies of Tube Feeding and Nutrition (cont.) • 126 patients receive a PEG, 75% are neurologically impaired and dependent in ADLs • Over 1 year, improvement in albumin of 1g/dL occurred in only 13.4% of patients; 5% had a decline • No significant improvement seen in any nutritional parameters • Stabilization of nutritional status may have occurred
- 33. Questions Generated Do feedingtubes… • Prevent aspiration pneumonia? • Prevent malnutrition and improve functional status? • Decrease the mortality rate?
- 34. Teno, J., etal. (2012). Feeding tubes and the prevention or healing of pressure ulcers. Archives of Internal Medicine, 172(9), 697-701. Does Tube Feeding Prolong Survival Significantly? • No published studies suggest tube feeding prolongs survival in dementia patients with dysphagia • Mortality rates remain consistently high following PEG placement in older adults with significant neurologic burden: – 30-day 20%-40% – 6-month 50%
- 35. Teno, J., etal. (2012). Does feeding tube insertion and its timing improve survival?. Journal of the American Geriatrics Society, 60(10), 1918-1921. 1 Year Survival From Baseline by FT Status 0 0 .25 .5 .75 1 100 200 300 400 Days from Baseline Survival FT No FT
- 36. Questions Generated Do feedingtubes… • Prevent aspiration pneumonia? • Prevent malnutrition and improve functional status? • Decrease the mortality rate? • Prevent pressure sores, hasten their healing, or improve patient comfort?
- 37. Teno, J., etal. (2012). Feeding tubes and the prevention or healing of pressure ulcers. Archives of Internal Medicine, 172(9), 697-701. • Compared to patients without PEG tubes, those with PEG tubes were: – 2.27 times more likely to develop pressure sore(s) – 0.70 times less likely to experience healing of an existing pressure sore PEG Tubes and Pressure Ulcers in Patients With Advanced Cognitive Impairment
- 38. Why Not OfferTube Feeding? • Tube-fed patients can experience increased incontinence, which can increase the risk of pressure ulcers • Tube-fed patients produce more urine, stool, and upper airway secretions • Tube-fed patients are more likely to be restrained
- 39. Questions Generated Do feedingtubes… Prevent aspiration pneumonia? Prevent malnutrition and improve functional status? Decrease the mortality rate? Prevent pressure sores or improve patient comfort?
- 40. Pasman, H., etal. (2005). Discomfort in nursing home patients with severe dementia in whom artificial nutrition and hydration is forgone. Archives of Internal Medicine, 165(15), 1729-1735. Dementia, Discomfort, and Cessation of ANH
- 41. PEG Short-Term Local irritation Infection PEGocclusion Aspiration Bleeding Reflux Diarrhea Tube migration PEG Long-Term Restraint use Diminished QOL Frequent replacement/removal No oral intake Limited socialization Poor mouth care Burdensome transitions Feeding Tube Complications
- 42. Teno, J., etal. (2011). Decision-making and outcomes of feeding tube insertion: a five-state study. Journal of the American Geriatrics Society, 59(5), 881-886. Decision-Making and Outcomes After PEG Decision-Making Process • 71.6% reported no conversation about tube • Risks not discussed in 1/3 cases • Discussion lasted less than 15 minutes • 51.8% thought MD was strongly in favor of tube • 12.6% felt pressure by MD to place tube • Worse end-of-life care Adverse Outcomes • Improved QOL 32.9% • Patient bothered 39.8% • Physical restraint 25.9% • Chemical restraint 29.2% • Either 34.9% • ED due to tube 26.8% • Feelings related to tube – Regret 23.4% – Right decision 61.9%
- 43. Mitchell, S., etal. (2016). Tube feeding in US nursing home residents with advanced dementia, 2000-2014. Journal of the American Medical Association, 316(7), 769-770. Tube Feeding Insertion Rates in NH Residents Residents With Advanced Dementia Year With Recent Onset of Total Dependence for Eating, No. With Feeding Tubes Over Subsequent 12 Months, No. (%) 2000 7029 820 (11.7) 2001 6738 774 (11.5) 2002 6239 701 (11.4) 2003 5518 577 (10.5) 2004 5194 462 (8.9) 2005 4628 398 (8.6) 2006 4389 393 (9.0) 2007 4110 357 (8.7) Residents With Advanced Dementia Year With Recent Onset of Total Dependence for Eating, No. With Feeding Tubes Over Subsequent 12 Months, No. (%) 2008 3890 331 (8.5) 2009 3842 297 (7.7) 2010 3794 283 (7.5) 2011 4538 264 (5.8) 2012 4246 235 (5.5) 2013 3685 207 (5.6) 2014 3411 193 (5.7)
- 44. Cervo, F., etal. (2006). To PEG or not to PEG: A review of evidence for placing feeding tubes in advanced dementia and the decision-making process. Geriatrics, 61(6), pp. 30-35. Decision-Making 1. Review the clinical issues 2. Establish the goals of care 3. Present options to manage the feeding problem 4. Weigh risks/benefits based on values/preferences 5. Determine how decisions affect the family member 6. Offer additional sources of decisional support 7. Provide ongoing support; recognize the need to revisit the decision
- 45. Case Study ofSH Concludes • Family elects not to pursue a feeding tube • Patient transitions to hospice at time of discharge • About 4 weeks later, patient dies comfortably at home with minimal oral intake and good mouth care
- 46. The Value Propositionof Hospice and Medicare Hospice Benefit These services are mandated by the Medicare Hospice Benefit Interdisciplinary Team of Hospice Professionals Home Medical Equipment Medication Bereavement Support Continuous Care Respite Care Routine Home Care Inpatient Care
- 47.
- 48. References Arcand, M. (2015).End of life issues in advanced dementia. Canadian Family Medicine, 61(4), 330-334. Callahan, C., et al. (2000). Outcomes of percutaneous endoscopic gastrostomy among older adults in a community setting. Journal of the American Geriatrics Society, 48(9), 1048-1054. Cervo, F., et al. (2006). To PEG or not to PEG: A review of evidence for placing feeding tubes in advanced dementia and the decision-making process. Geriatrics, 61(6), 30-35. Henderson, C., et al. (1992). Prolonged tube feeding in long-term care: Nutritional status and clinical outcomes. Journal of the American College of Nutrition, 11(3), 309-325. Lembeck, M., et al. (2016). The role of IV fluids and enteral or parenteral nutrition in patients with life limiting illness. The Medical Clinics of North America, 100(5), 1131-1141. Marcolini, E., et al. (2018). History and perspective on nutrition and hydration at the end of life. Yale Journal of Biology & Medicine, 91(2), 173-176. Mitchell, S., et al. (1997). The risk factors and impact on survival of feeding tube placement in nursing home residents with severe cognitive impairment. Archives of Internal Medicine, 157(3), 327-332.
- 49. References Mitchell, S., etal. (2009). The clinical course of advanced dementia. New England Journal of Medicine, 361, 1529-1538. Mitchell, S., et al. (2016). Tube feeding in US nursing home residents with advanced dementia, 2000-2014. Journal of the American Medical Association, 316(7), 769-770. Pasman, H., et al. (2005). Discomfort in nursing home patients with severe dementia in whom artificial nutrition and hydration is forgone. Archives of Internal Medicine, 165(15), 1729-1735. Teno, J., et al. (2012). Does feeding tube insertion and its timing improve survival? American Geriatrics Society, 60(10), 1918-1921. Teno, J., et al. (2012). Feeding tubes and the prevention or healing of pressure ulcers. Archives of Internal Medicine, 172(9), 697-701. Teno, J., et al. (2011). Decision-making and outcomes of feeding tube insertion: A five-state study. Journal of the American Geriatrics Society, 59(5), 881-886.