Tube feeding at the end of life: ethics and best practices

I attended a great CME on tube feeding at the end of life, on August 18, 2011, by Dr. Michael Rabow from UCSF. Here is a summary of the highlights:

While 90% of doctors think patients with advanced dementia benefit from tube feeds and over half believe PEG tubes in advanced dementia are the standard of care, the available evidence shows very limited benefit and often significant downsides. Specifically: nutritional status is not improved, aspiration rates are not decreased, hunger/thirst is no better, there is not religious ethical requirement for tube feeding, and it does not prolong life (with 3 narrow exceptions, noted below).

14% of families of patients with PEG tubes said they felt pressured or coerced into agreeing to placement of PEG. When patients with end-stage illness and families of patients with advanced dementia are given their prognosis, the goals of therapy are discussed, and the downsides of PEG reviewed (including a 71% chance of needing restraints to prevent the tube from being pulled out for patients with advanced dementia), only about 10% want feeding tubes (compared to about 50% that are currently getting them.)

Specifically on the role of swallowing studies: helpful for developing speech therapy regimens and recommending consistency of food, but decisions to place PEG tubes based on swallowing studies to PREVENT ASPIRATION PNEUMONIA are found not to be very predictive in longitudinal studies. (About 65% specificity and sensitivity.)

PEG tubes can prolong life in the following cases (for patients not at the end of life and without advanced dementia):

1.      Acute, reversible illness (such as sepsis and burns)

2.     Selected chronic illnesses (e.g. HIV, ALS)

3.     High GI obstruction in early cancer (including XRT involving head, neck, proximal GI tract)

Physicians are not good at prognostication, and we don’t like doing it. Yet it is a key to the patient consent process. 63% are overly optimistic, 17% are overly pessimistic. Accuracy increases with clinical experience and drops with increased knowledge/connection with the patient. Accuracy drops 12% for every year a physician knows a patient. Patients tend to be even more optimistic than physicians 82% of the time. Patients and families want prognostic information; it impacts decision-making about tube feeding and other end-of-life decisions. Some hints on overcoming our tendency towards over-optimism (none are perfect, but this may help physicians integrating many different factors):

1.      In bed over 50% of the time suggests a 3-month prognosis.

2.     Consider not just the severity of the disease but the progress of the disease.

3.     Ask yourself: “Would I be surprised if my patient died within 1 years, 2 years, etc.”

4.     In patients with advanced cancer, factors suggesting less than 30 days survival are:  dyspnea, dysphagia, physician estimate of less than 3 months, leukocytosis >8500.

While some families may want to initiate tube feeds because feeding is a symbol of love/caring and they don’t want to see their loved one starve, tube feeds decrease attention and nurturing, decrease attention to oral care, shift the focus to painful oral ulcers/lip fissures. In these cases, discuss alternatives to tube feeds:

1.        Foods of preference

2.       Slow hand feeding

3.       Time limited trial with clear goals/timeline for re-assessment

4.       Other expressions of love and care

5.       Realistic acknowledgement of prognosis (consider shift to comfort care).

The financial incentives of our system tend to promote tube feeding in spite of this lack of evidence of benefit. Medicare and insurance cover insertion of the PEG and formulas for feeding. If patients with advanced dementia can’t feed themselves, slow hand feeding is paid for by the SNF. SNFs and nurses often initiate request for PEG tubes.

In summary, it is our duty as clinicians to keep the evidence of harm and benefit in mind in our therapies and discussions with patients and their families, to avoid increasing suffering, pain, and loss of dignity for patients at the end of their lives.

Robert Moore, MD, MPH

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