Nutrition and Hydration at the End of Life Hunter Woodall, MD Nathan Bradford, MD AnMed Family Medicine Residency Anderson, SC

Learning Objectives 1 Learners will become familiar with the usual pattern of decline in oral intake at the end of life. Learners will be better prepared to handle questions about thirst and hunger from families of dying patients.

Learning Objectives 2 Learners will be able to discuss the evidence for and against artificial feeding at the end of life, particularly in dementia patients. Learners will be introduced to hypodermoclysis and some of its common uses at the end of life.

Oral intake declines near the end Oral intake can be used to inform prognosis. Patients without oral intake or IV fluids usually die peacefully in 6–8 days (range 1–14 days).

The Typical Pattern Self feed Spoon fed Drinks sips/takes bites Uses straw mainly for sips Small amounts by syringe Mouth care only

Hunger and Thirst Most dying patients are anorexic and display little to no appetite Many folks want a tiny favorite taste When intake slows down, good mouth care is vital for comfort Prepare families and be ready to treat rattling near the end (more on this later) #10 Tube feed or not tube feed 2nd ed http://www.eperc.mcw.edu/EPERC/FastFactsIndex/ff_010.htm (Fast Fact #010 Hallenbeck, 2005)

EXERCISE ONE FAST FACT # 133 Robin Fainsinger, MD, 2009 https://www.capc.org/fast-facts/133-non-oral-hydration-palliative-care/ What is the take home message? Fast Fact #133 Non-oral hydration in palliative care. Fainsinger 2009 https://www.capc.org/fast-facts/133-non-oral-hydration-palliative-care/

FEEDING = LOVE Family members will ask about: Hunger, thirst, and starvation Non-oral hydration or feeding NG/PEG IVF or even TPN Some will equate medical interventions with normal feeding Fast Fact #084 Swallow studies, tube feeding, and the death spiral. 2nd ed. Weissman 2009 https://www.capc.org/fast-facts/84-swallow-studies-tube-feeding-and-death-spiral/ Fast Fact #133 Non-oral hydration in palliative care. Fainsinger 2009 https://www.capc.org/fast-facts/133-non-oral-hydration-palliative-care/ (Fast Fact #084 Weissman, 2009; Fast Fact #133 Fainsinger, 2009)

Non-Oral Feeding/Hydration Doctors can over-feed as well Non-oral hydration is a medical intervention and can be ethically stopped or refused

Parenteral Hydration Advantages: Disadvantages: Can prolong awake time Can treat or prevent delirium Comforts families and may buy time Occasionally needed for essential access Disadvantages: Peripheral edema Troublesome secretions Pulmonary edema—breathlessness Fast Fact #133 Non-oral hydration in palliative care. Fainsinger 2009 https://www.capc.org/fast-facts/133-non-oral-hydration-palliative-care/ Fast Fact #134 Non-oral hydration techniques in palliative care. Fainsinger 2009 https://www.capc.org/fast-facts/134-non-oral-hydration-techniques-palliative-care/ (Fast Fact #133 Fainsinger, 2009; Fast Fact #134 Fainsinger, 2009)

EXERCISE TWO Read Fast Fact #10 James Hallenbeck, MD, 2005 https://www.capc.org/fast-facts/10-tube-feed-or-not-tube-feed/ Did you learn something new? Fast Fact #010 Tube feed or not tube feed. 2nd ed. Hallenbeck 2005 https://www.capc.org/fast-facts/10-tube-feed-or-not-tube-feed/ Also see : Finucane 1999, Li 2002, Thompson 2009

Dementia and Tube Feeding TF can be refused or stopped TF in severely demented persons is futile: It does not decrease mortality, fix skin problems, or provide comfort. A tube provides medication access but is usually not necessary for that purpose Fast Fact #010 Tube feed or not tube feed. 2nd ed. Hallenbeck 2005 https://www.capc.org/fast-facts/10-tube-feed-or-not-tube-feed/ Also see : Finucane 1999, Li 2002, Thompson 2009 (Fast Fact #010 Hallenbeck, 2005)

Treating the Rattling Be parsimonious with fluids Positioning Suction Atropine or hyoscyamine Glycopyrrolate Transderm scopolamine Fast Fact #109 Death rattle and oral secretions. 2nd ed. Bickel/Arnold 2009 https://www.capc.org/fast-facts/109-death-rattle-and-oral-secretions/ (Fast Fact #109 Bickel/Arnold, 2009)

Hypodermoclysis No more “hunt the vein” Provides access for: Limited fluids Analgesic pumps Parenteral antinausea meds Palliative sedation Fast Fact #220 Hypodermaclysis. Kamal/Bruera 2009 https://www.capc.org/fast-facts/220-hypodermoclysis/ (Fast Fact #220 Kamal/Bruera, 2009)

Annie 1 Annie, an 80-year-old lady, was diagnosed with Alzheimer’s dementia 4 years ago. She now needs one person assist to get to the bathroom and is dependent for other ADLs. She has lost 10 # over the past 2 months. She still recognizes some family but says only one or two words at a time. She has an active seizure disorder, requiring daily meds. She is admitted to the hospital with pneumonia. A swallowing study shows dysphagia with intermittent aspiration.

Annie 2 Annie responds to treatment for her pneumonia but now her daughter asks you about options to treat her dysphagia. What do you say?

Annie 3 Annie’s family chooses a PEG tube to make sure she can get her AEDs, and they decide to use it for feeding as well. One month later she is back in the hospital with aspiration pneumonia, and her daughter asks for a family meeting to reconsider the tube feeding. What do you say now?

Annie 4 Annie goes home with hospice care and hand feeding. She still chokes at times but initially takes enough orally to remain hydrated. Two weeks later her hospice nurse asks for help with her overwhelming oral secretions. What do you order?

Annie 5 The glycopyrrolate through the PEG tube works well, but a few days later Annie stops swallowing completely. You are asked to have one more family meeting. What do you say?

Betty 1 Betty B has Stage IV breast cancer metastatic to bone. Her pain is 10/10 despite long- and short-acting oral morphine. Her veins are horrendous after surviving several bouts of chemotherapy. She enters the hospital for pain control and is planning to go home with hospice care. She is moderately dehydrated with severe oral thrush. What can you offer her?

Betty 2 Hypodermoclysis provides: Hydration Parenteral pain medication After the above measures are instituted and Betty’s thrush is treated she is more comfortable. She goes home with hospice.

Summary 1 Oral intake declines as a natural part of dying. Persons without oral or IV hydration usually die peacefully in 6-8 days. IV fluids at the end of life can increase edema, congestion, and discomfort.

Summary 2 Tube feeding in severely demented patients does not decrease morbidity nor mortality. For rattling, glycopyrrolate has the advantage of not having brain effects. Hypodermoclysis can provide both medication and limited hydration to patients who cannot swallow.