In hospice care there is a need for difficult conversations that lead to even more difficult decisions by healthcare providers, their patients and families. Of the most challenging conversations is that about commencing, maintaining or removing artificial nutrition and hydration (ANH) as a patient nears the end-of-life.
These decisions are complex for various reasons, including medical and ethical guidelines, along with the consideration of the emotions of patients and their families. In addition, difficult questions about withholding food and water at the end of life will arise, and the religious, cultural, spiritual and personal factors that are involved with a loved one’s forthcoming death further complicate the conversation.
Hospice care providers can maneuver these difficult decisions by fostering engaging conversations that are rooted in empathy and well-informed by their expert clinical knowledge, skills and experience.
Create an Individualized Plan for Hospice Care
Proactive care planning demonstrates an optimal method for the patient and family to clearly explain the wishes and values of the patient before the patient becomes unable to do so. Providers can inform patients and families of the process of natural death, inclusive of the role that ANH may play. The interdisciplinary team can be an indispensable source that they can rely on to effectively conduct such conversations so that all standards, including medical, ethical and professional, are met, or exceeded.
Since each patient’s prognosis, needs, and objectives of care vary, the decisions regarding ANH should always be established after thoughtful, transparent and informative conversation that needs to address the following:
- Specific diagnosis and prognosis (how ANH will impact each)
- Medical issues (the implications for or against ANH)
- Non-medical issues (the personal, cultural and religious beliefs and values of the patient and their family and how these can be respected in the hospice plan of care)
- Quality of life (if ANH will increase or decrease suffering)
- Goals of care (if the decisions related to care will reinforce the wishes and values of the patient)
Provide Education to Family Members About the Dying Process
Current research does not support the claim that withholding food and water at the end-of-life contributes to suffering and/or the prolongation of life. This should be incorporated into the discussions with the patient and family as well as the creation of the specified plan for hospice care. Furthermore, as the condition of the patient changes, the plan for hospice care should change appropriately also.
It is important that the clinical staff in the interdisciplinary team mitigate the associated emotional issues by reassuring the family that the team is not “giving up on” or “starving” a patient in hospice care who stops eating or drinking. On the contrary, the team should provide education to their patients and families regarding the human body’s natural dying process, including the fact that the digestive tract shuts down with an increasing incapacity to process food and liquids. Patients’ families can find reassurance in understanding that as food and liquid intake decelerates, the patient’s body often also releases the “feel-good” endorphins naturally to relieve pain.
The Benefits and Risks/Complications of Tube Placement:
For hospice patients the following overall guidelines address feeding tubes:
- Existing feeding tube: If patients are enrolled in hospice with already existing feeding tubes, physicians should work closely with patients, their families and any other caregivers to make decisions with regard to if and when to reduce or cease ANH. As a patient nears the end of life, ANH can be responsible for discomfort, aspiration and development of bedsores, absent of the advantage of prolonged life.
- Placing a new feeding tube: Typically, feeding tubes are not placed for patients once they are admitted into hospice care. Rarely, a decision will be made, with collaboration between the patient, family and interdisciplinary team, to proceed with implementing a feeding tube.
Generally, research shows that ANH does not extend life or lengthen longevity of survival. However, it has shown that it can be connected with various difficulties that decline the quality of life for the patient. Typical difficulties caused by ANH include irritation, infection, blockage, discomfort, aspiration pneumonia, bleeding, reflux, uncontrolled diarrhea, limited socialization/movement, frequent replacement or removal of tubes, a lack of proper oral care, and elevated utilization of physical and/or chemical restraints. Tube feeding near the end-of-life can also develop sensations of “drowning” or uncomfortable “fullness” for the patient.
As an example of prognosis-based guidelines, the American Geriatric Society, American Academy of Hospice and Palliative Medicine, and The Society for Post-Acute and Long-Term Care Medicine do not recommend feeding tubes for patients with advanced Alzheimer’s/dementia, but instead, recommend oral assisted feeding, (Teno, J., et al, 2014).
Frequently Asked Questions from Healthcare Providers Regarding ANH at End-of-Life:
- Do feeding tubes prevent malnutrition? Not necessarily, as many people that are on hydration and feeding tubes still experience malnutrition due to their underlying disease, immobility, and/or neurologic deficits (but not typically from a lack of food and water).
- Do feeding tubes prevent bedsores or expedite healing? ANH can increase urine output, stools, diarrhea, upper airway secretions, and immobility, which can all intensify and increase bedsores, as well as interfere with the overall healing of existing wounds.
- Do feeding tubes reduce the mortality rate? According to research, life expectancy is virtually identical for patients who are offered ANH at the end-of-life with those who are not offered it.
- Do feeding tubes prevent aspiration pneumonia? Current research does not support the claim that feeding tubes reduce the risk of aspiration pneumonia or regurgitated gastric material. On the contrary, some evidence indicates that there is an increased risk of aspiration, as patients with tubes can still aspirate gastric material and oral secretions, or even suffer aspiration pneumonia from other natural causes.
Educate Families About End-of-Life Care
Healthcare providers are instructed to encourage patients’ families to adhere to the following established guidelines for hospice patients with regard to hydration and nutrition near the end-of-life:
- Provide small sips of water or liquids, ice chips, hard candy or significantly small amounts of food with a spoon if the patient is still able to eat and/or drink. Adhere to signs from the patient for when to stop.
- If a patient is no longer able to drink, maintain moisture of their mouth and lips with swabs, a wet washcloth, lip balm or moisturizers.
- Encourage family members to offer alternative forms of nourishment such as engaging conversation, loving touch, music, poetry, humor, visits from pets, gentle massages, reading, prayers or other behaviors of compassion and love.
Teno, J., Meltzer, D. O., Mitchell, S. L., Fulton, A. T., Gozalo, P., & Mor, V. (2014). Type of attending physician influenced feeding tube insertions for hospitalized elderly people with severe dementia. Health Affairs, 33(4), 675-82. Retrieved from https://www.healthaffairs.org/doi/10.1377/hlthaff.2013.1248