Nutrition and Hydration at the End of Life Facilitator S Guide

Nutrition and Hydration at the End of Life–Facilitator’s Guide

Learning Objectives:

1. Learners will become familiar with the usual pattern of decline in oral intake at the end of life.

2. Learners will be better prepared to handle questions from families of dying patients about thirst and hunger, including the pros and cons of IV fluids.

3. Learners will be able to discuss the evidence for and against artificial feeding at the end of life, particularly in dementia patients.

4. Learners will be introduced to hypodermoclysis and some of its common uses in end of life patients.

Key Points and Teaching Instructions: 20–30 minutes including pretest and exercises

Give out pretest while learners are gathering. Author contact: [email protected]

Slides 2–3: Learning Objectives

These observations are gleaned from 15 years as the sole doctor at an inpatient hospice. Telling families about these numbers has proved quite helpful.

Many patients follow the downward progression as noted. Patients will sometimes skip a step or go back and forth for a few days. The syringe is usually a 5 ml with a 2–3 cm flexible tube attached.

Often patients will request a taste of some favorite food but will take just two to three bites. Good mouth care, usually using stick sponges, is paramount in dying patients. Cleaning the tongue and mouth and lips should happen several times a day. One can place water, glycerin, and even flavors on the sponges. Families should be instructed and encouraged in mouth care and hand feeding but cautioned about amounts and speed of feeding to minimize choking, gagging, and aspiration. It is also important to prepare families for the rattling that often comes in the last 24–48 hours. See slide 11.

Exercise One—Direct students to Fast Fact #133 “Non-oral hydration in palliative care” and give them 3– 5 minutes to review it. Ask them to be ready to report the “take home message” back to the group. This can be done in pairs, triad, or teams.

Slides 8–10: Many decisions made around feeding at the end of life are based in large part on emotional responses. Many families have long held patterns of expressing love with food. When asked about starvation, I make the distinction between starvation where a person is able to eat but cannot get food and inanition where a disease makes the person unable to swallow or utilize food that is readily available. Poor consciousness and/or dysphagia are the most common reasons that dying folks cannot swallow very much. Decisions concerning non- oral hydration (NG/PEG or IV) must be collaborative. While it is ethical to stop or withhold non-oral hydration or feeding, some families and some doctors will insist upon it. One should think about essential medicines that require ongoing non-oral access, such as antiepileptic drugs. Also ask about social situations where the patient may want to extend life and consciousness for a few days. Note that parenteral pain meds can be given by subQ injection or hypodermaclysis and therefore do not require IV access. Fast Facts #84 “Swallow studies, tube feeding, and the death spiral,” #133 “Non-oral hydration in palliative care,” and #134 “Non-oral hydration techniques in palliative care” will really help prepare one to discuss these points.

© Society of Teachers of Family Medicine & Association of Family Medicine Residency Directors Slide 11: Exercise two—direct students to Fast Fact #10 “Tube fed or not tube feed.” and give them 3–5 minutes to review it. Ask them to write down and be ready to report the “take home message” back to the group. This can be done in pairs, triad, or teams. This can jump start the discussion of tube feeding.

Learners may have some strong and often ill-informed opinions regarding the efficacy and ethics of tube feeding. Physicians can help families a great deal by helping them understand the futility of tube feeding in their demented loved ones. This could be a good place to mention the Thompson Cochrane review.

Ratting will be less if the patient is on the dry side at the end. Some practitioners actually discuss this with families as the “dry death” as opposed to the “wet death.” (Most residents will have witnessed an ICU death of a pt bloated and edematous from 4 or 5 IV lines and drips). Glycopyrrolate is available in pills, oral solution, and injectable forms. It has the advantage of not adding to delirium like atropine or hyoscyamine or TD scopolamine. It does add to urinary retention. TD Scopolamine patches need no swallowing or IV access and last 48–72 hours. This is covered in Fast Fact #109 “Death rattle and oral secretions.”

The Fast Facts #134 “Non-oral hydration techniques in palliative care” and # 220 “Hypodermaclysis” are helpful here. Family physicians need to retain that this technique is available and widely used in palliative settings. It is mainly used for pain medication pumps. When using the technique for other medicines, one needs to consult an experienced hospice/palliative pharmacist.

Cases and Teaching Points: Case One 10 minutes. Case Two 5 minutes. Give a print out of test answers.

Slides 15–19 Case 1 Annie: This case offers learners the opportunity to practice speaking with a family of a demented patient about the NG/PEG feeding decision. One could have role plays with learners and/or faculty in pairs or triads followed by discussion. A PEG is placed for dependable access for Annie’s antiepileptic drugs, but Annie aspirates on the tube feedings so the discussion continues and eventually she ends up on hand feeding with drugs only though her tube. Then she develops uncontrolled secretions. This allows learners to practice prescribing glycopyrrolate or similar agents. The typical dose in an elderly lady like Annie is 1mg BID. If one desires they can make the medicine cause urinary retention. The last slide in the case gives learners the opportunity to discuss IVF and wet death versus dry death.

Slides 20–21 Case 2 Betty: This patient needs parenteral pain medication but has very poor IV access. The case offers the opportunity for learners to consider hypodermoclysis. If necessary have the patient refuse all surgery including placing a central line or a port. Betty can get 500–100 ml of fluid in 24 hours by hypodermoclysis and can piggy back a morphine pump on that or have a separate site. (Figuring the morphine pump setting is covered elsewhere, but one takes her daily oral morphine dose and divides by 3 to get her parenteral morphine dose and then divides by 24 to get an idea of her hourly pump rate—remembering that her pain is insufficiently controlled.) Betty’s thrush can be treated with fluconazole and/or oral nystatin with or without lidocaine.

Slides 22-23 Summary Points

Pretest and answers on next pages.

1. What usually happens with severely dysphagic (mouth care only) end of life patients without non-oral feeding or hydration? (one best answer)

a. Hyponatremia leads to severe delirium in 48 hours.

b. Dehydration sets in, and they die in misery in 3 days.

c. Edema decreases, discomfort improves, and they die quietly in 6–8 days.

d. Families accuse the physician of starving the patient to death

End of life patients who can no longer take fluids slowly dehydrate. Their edema-related symptoms actually improve. They are at higher risk for delirium but not hyponatremia. Patients usually last 6–8 days and die peacefully (range 1–14 days).

2. Regarding NG/PEG feeding in demented patients with dysphagia choose the true statements below: (multiple answers possible)

a. NG/PEG feeding increases protein nutrition and decreases the incidence of pressure sores.

b. The American Geriatric Society recommends that NG/PEG feeding be avoided in favor of hand feeding.

c. A Cochrane review showed a slight survival advantage in patients with PEG feeding over patients with hand feeding.

d. Patients with PEG tubes show much less aspiration problems than patients with NG tubes.

NG and PEG tubes have similar complication rates. The AGS strongly favors hand feeding over NG/PEG feeding in demented patients with dysphagia because the tube feeding provides NO survival, morbidity, or comfort advantage. A Cochrane review confirmed these findings.

3. Common side effects of IV fluids in the dying patient include: (multiple answers possible)

a. Increased oral secretions

b. Pulmonary edema

c. Peripheral edema

d. Agitated delirium

Other ill effects relate to the difficulty finding and keeping an IV site and wide variations in electrolyes. Delirium related to dehydration and electrolyte abnormalities can be improved by IV fluids; however, if restraints are used in delirious patients to keep them from pulling out their IVs then the restraints can add to delirium.

4. Techniques or medicines to manage the “death rattle” in dying patients include which of the following: (multiple answers possible)

b. Rolling patient onto his/her side

c. IV fluid hydration

d. Glycopyrrolate

Oral pharyngeal suctioning causes gagging and is used only when plainly needed. Positioning to drain secretions away from the throat or to assist the patient’s impaired swallowing can be helpful. Glycopyrrolate dries up oral secretions and does not cross the blood brain barrier like atropine or scopolamine.

© Society of Teachers of Family Medicine & Association of Family Medicine Residency Directors 5. Issues for the clinician to consider in family discussions regarding non-oral hydration for the dying patient include which of the following: (multiple answers possible)

a. Physician self-reflection on one’s own biases

b. It may be appropriate to provide non-oral hydration to achieve a specific goal agreed upon with the family

c. Intravenous hydration can cause increased discomfort

d. Patients or surrogates may accept or refuse non-oral hydration

All of these issues should be considered as well as the need for access for essential medicines that can no longer be taken orally.

6. Hypodermoclysis can be used for which of the following: (multiple answers possible)

a. Total parenteral nutrition

b. Parenteral analgesic pumps

c. Non-oral rehydration

d. Drainage of subcutaneous edema

TPN requires too much volume to be provided without central IV access. Pain medication pumps work very well with hypodermoclysis. Limited rehydration can also be done. Hypodermoclysis involves subcutaneous infusions not drainage.

References:

Read the following Fast Facts: Found at The Center for Advancement of Palliative: Care Fast Facts and Concepts http://www.mypcnow.org/fast-facts

Fast Fact #010 Tube feed or not tube feed. 2nd ed. Hallenbeck 2005 http://www.mypcnow.org/blank-a11lk

Fast Fact #084 Swallow studies, tube feeding, and the death spiral. 2nd ed. Weissman 2009 http://www.mypcnow.org/blank-v2lx5

Fast Fact #109 Death rattle and oral secretions. 2nd ed. Bickel/Arnold 2009 http://www.mypcnow.org/blank-wz9l3

Fast Fact #133 Non-oral hydration in palliative care. Fainsinger 2009 http://www.mypcnow.org/blank-o8f4d

Fast Fact #134 Non-oral hydration techniques in palliative care. Fainsinger 2009 http://www.mypcnow.org/blank-kp0gs

Fast Fact #220 Hypodermaclysis. Kamal/Bruera 2009 http://www.mypcnow.org/blank-hhzpb

© Society of Teachers of Family Medicine & Association of Family Medicine Residency Directors Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: a review of the evidence. JAMA 1999;282:1365-70.

Li I. Feeding tubes in patients with severe dementia. Am Fam Physician 2002 April 15;65(8): 1605-10.

Choosing Wisely: American Geriatrics Society. 2012. Five things physicians and patients should question. http://www.americangeriatrics.org/files/documents/choosing_wisely_list2.pdf

Sampson EL, Candy B, Jones L, Sampson EL. Enteral tube feeding for older people with advanced dementia (Cochrane Review). In: The Cochrane Library 2009;2. Chichester, UK: John Wiley and Sons, Ltd.