Nutrition Support at the End of Life: A Critical Decision
By M. Patricia Fuhrman, MS, RD, LD, FADA, CNSD
Vol. 10 No. 9 P. 68
Caring for terminally ill patients involves acting ethically and in the individuals’ best interest—a daunting task when patients, families, and health professionals are faced with difficult choices.
Nutrition support alone does not reverse or cure a disease or injury. It is adjunctive therapy that enables a patient to meet nutrient needs during curative or palliative therapy. Nutrition support via a feeding tube or intravenous catheter is a lifesaving therapy for patients who are unable to meet nutrient needs orally. Guidelines are available that provide timelines for how long clinicians should allow inadequate intake before initiating nutrition support.1 However, the timeline for starting and stopping nutrition support in terminally ill patients is often less clear to the clinician, resulting in angst over what is “the right thing to do.”
Burdens of Nutrition Support
There are considerable data indicating that it is not beneficial to provide nutrition support for patients with an irreversible (permanent vegetative state or advanced dementia) or terminal (death anticipated within six months) illness.2 Seventy prospective randomized controlled trials of nutrition support in cancer patients were reviewed and showed no clinical benefit to this patient population.3 Evidence suggests that providing nutrition support can contribute to increased suffering in terminally ill patients due to increased nausea, vomiting, bleeding, edema, pulmonary edema, incontinence (bladder and bowel), or infections, as well as a potential requirement for patient restraint.2,4,5
A comprehensive study of nursing home patients with dementia reported that the insertion of feeding tubes did not improve survival over those hand fed, did not lower the risk of aspiration pneumonia, and did not improve pressure ulcer healing, weight status, comfort, or functional status.4 Another study found that nursing home residents with a feeding tube died 1.44 times sooner than those without a feeding tube.5
The notion that withholding nutrition support contributes to pain and suffering has also been debated. Positron emission tomography scans have demonstrated that when a patient is in a persistent vegetative state, the brain areas responsible for pain perception do not function.4 Therefore, providing nutrition support to this patient population to provide comfort and reduce suffering is not science based. Some studies of patients who are dying have indicated that thirst and hunger are not a significant problem when patients decide to forgo nutrition support and hydration.6,7 A study of nurses caring for terminally ill patients who voluntarily chose to stop food and fluid intake reported the nurses’ median score of the quality of the patients’ deaths as 8 (range: 0 equaled very bad death and 9 equaled very good death).8 For patients with irreversible or terminal illness, it appears that nutrition support may not benefit the patient but may increase suffering and hasten death.
Benefits of Nutrition Support
Nutrition support has been shown to benefit competent patients by reducing physical deterioration, improving quality of life, and preventing the emotional effect of “starving the patient to death.”9 Practice guidelines for palliative care in adults with progressive head and neck cancer reported that tube feeding improved nutrient intake, quality of life, and fluid status.10
Home nutrition support can be a lifetime commitment for patients with intestinal failure due to either surgical removal or disease/treatment-related impairment of a portion of the gastrointestinal tract. Nutrition support is life sustaining, but does it have a positive impact on a patient’s quality of life? Bozetti and colleagues examined the quality of life for patients with advanced cancer on home parenteral nutrition (HPN).11 The patients were severely malnourished, had limited swallowing ability, and were no longer receiving curative therapy. The researchers reported that quality of life was better for patients who received HPN for a minimum of three months. Therefore, the anticipated life expectancy for patients with advanced cancer may be a factor to consider when examining HPN’s potential benefit vs. burden.
Winkler and Wetle conducted qualitative interviews on quality of life with three patients on long-term HPN.12 The authors reported that the patients expressed a good quality of life despite the challenges of the technologically complex therapy. Thompson et al examined the coping skills of patients on home enteral nutrition (HEN).13 Successful coping was earmarked by patients’ acceptance of personal responsibility for their attitude and behavior. The authors developed an educational manual (available at www.copingwell.com) based on the research to help other adults on HEN successfully cope with the therapy.
Location, Location, Location
The approach to nutrition support at the end of life may differ based on where the patient is dying. As the name suggests, an intensive care unit (ICU) is a location where intense medical and surgical treatment is provided. Despite the lifesaving therapy that occurs in the ICU, many deaths happen there after life-sustaining therapy is withheld or withdrawn.14-17 A challenge for healthcare professionals in the ICU is to integrate philosophical, ethical principles with sociological patient care and comfort.18 Ethical behavior and decisions must be encased in compassion, honesty, and respect.18
A long-term care or home location should be more compassionate since the caregiver either has a longer period of time to get to know the patient or is a family member or friend. However, a survey of the survivors of 1,578 people reported that patients in nursing homes were 60% more likely to experience poor pain management and 2.5 times less likely to be treated with respect compared with patients in their homes.19 It appears that when feasible, the optimal location for end-of-life care is the patient’s home.
Palliative vs. Hospice Care
Palliative care provides physical symptom management, emotional support, and spiritual comfort when no curative therapy is available or after making the decision to no longer continue curative or life-prolonging therapies.18 The transition from curative to palliative therapy should be a continuum of care to diminish any feeling of abandonment by the patient and family.
Hospice care integrates palliative care into “focus on relieving the substantial symptom burden patients face at the end of life, as well as advanced care planning needs, existential concerns, and family and social stressors.”20 A study by Lorenz et al revealed that 63% of 149 hospices surveyed in California reported denying admission to patients receiving complex therapy, including PN (38%), EN (3%), chemotherapy (48%), and radiation (36%). Freestanding hospice programs were more likely to deny admission based on these criteria than hospice programs that were part of a statewide or national chain. These restrictive admission criteria could inhibit patients from entering a hospice program. Hospice care should ideally begin approximately six months prior to death. The imprecise ability to predict death and the fear that accepting hospice care is “giving up” results in many patients entering it weeks, days, or hours before their death.
Debate Over Hydration
Hydration’s role in the dying process has been debated. Fear of making patients uncomfortable due to thirst encourages clinicians and families to provide fluids to patients when oral intake is declining or artificial nutrition has been discontinued. Small studies have suggested that fluids play a minimal role in patient comfort as long as meticulous mouth care is provided.6,7 Based on his 20 years of experience working with terminally ill patients, Fine observed that providing “comfort foods” and oral hydration was therapeutic for the patients.2 The oral intake of fluids decreases during the dying process. Water deprivation increases the body’s production of endogenous opiates that create a euphoric state and has been associated with a reduction in pain.21,22 The provision of intravenous hydration can have a negative impact on quality of life by increasing pulmonary secretions, urinary output, nausea, vomiting, and edema.2,23 As stated previously, the symptoms of dry mouth should be managed with ice chips, lip balm, and moistened swabs.
The Roman Catholic Church has exerted a tremendous influence over ethical decisions concerning withdrawing and withholding nutrition support. There are currently two views from the church. In 1957, in “The Prolongation of Life,” Pope Pius XII expressed the view that the spiritual supercedes the physical, and therefore artificial nutrition and hydration are morally optional when patients can no longer interact with the world around them. The Catholic Bishops of Texas and other Catholic theological leaders have reiterated that it is acceptable for nutrition support to be withheld or withdrawn from a patient in a persistent vegetative state.24,25
However, in a 2004 papal allocution, Pope John Paul II stated that clinicians are obligated to provide nutrition and hydration to most patients in a persistent vegetative state.26 According to Fine, Pope John Paul II encased this papal allocution in an inaccurate analysis of medical science.2 The pope referred to the uncertainty of the persistent vegetative state prognosis and the suffering caused by not feeding and stated that the insertion of feeding tubes and intravenous catheters was not a “medical act.”26 Fine countered the pope’s statements, saying there are diagnostic methods to determine when a persistent vegetative state is not reversible; patients in a persistent vegetative state do not experience suffering; and insertion of a feeding tube or intravenous catheter is a chargeable medical procedure.2 Fine argues that withdrawing nutrition and hydration from patients in a persistent vegetative state is done with respect to patient autonomy or the belief that a patient without the ability to interact with others and the environment is no longer “human.”
What an individual believes vs. what his or her religious affiliation teaches may differ. Therefore, healthcare providers must communicate with patients and families to determine preferences.
Guidelines for Approaching Nutrition Support
Nutrition and hydration are life-sustaining medical therapies that, like other medical therapies, can be legally initiated or ceased.27 The American Dietetic Association’s position paper on providing food and hydration to the terminally ill states, “The patient’s expressed desire is the primary guide for determining the extent of nutrition and hydration.”27 The difficulty lies in determining the patient’s desires. Conversations about end-of-life issues should be initiated early in the diagnostic and treatment stages rather than waiting until the dying process has begun. Ideally, there should be documentation through advance directives outlining the patient’s beliefs, thoughts, and desires concerning care during the final stages of life. However, only 20% to 30% of people have advance directives, and it is doubtful that all of these individuals review the documents annually as recommended.28,29
When the patient is unable to make decisions, a family member becomes a surrogate and is charged with the responsibility of making the decision based on the patient’s values, which can be difficult if the patient’s values differ from the surrogate’s beliefs or if the family disagrees about what to do.18 The typical sequence of withdrawing therapies begins with dialysis, vasopressors, and blood tests, while nutrition support and mechanical ventilation are withdrawn last. The sequence is often based on physician bias rather than patient goals and desires.18
Clinical practice guidelines for determining who should be considered for HPN have been published and include the following:
• The patient has the potential to benefit from PN.
• The anticipated length of therapy is six months or longer.
• The patient’s Karnofsky score is greater than 50.
• The family and patient can perform the tasks required to infuse PN.
• The home environment is safe and clean.
• The patient is available for follow up and monitoring while receiving HPN.30
Clinicians often approach the recommendation to discontinue nutrition support based on the therapy’s perceived futility. Futility or ineffectual therapy may be hard to quantify for the patient and family, and it may behoove the clinician to discuss the overall appropriateness or the minimal benefit of the therapy for the patient. If the patient’s wishes are unclear or the family cannot agree, it may be beneficial to continue discussions before terminating therapy. If therapy is stopped abruptly, it could be perceived as lack of caring or abandonment. Follow this rule: “When in doubt, don’t take it out.”27,31
Nutrition support at the end of life should be carefully considered based on a patient’s wishes, prognosis, and therapy goals. Communication among the patient, his or her family, and healthcare providers is essential. Open and honest communication can facilitate decisions that are in the patient’s best interest. The patient’s autonomy should be the driving force in making informed decisions. Ongoing evaluation of benefit vs. burden should occur throughout therapy.
— M. Patricia Fuhrman, MS, RD, LD, FADA, CNSD, is the national director of dietetic services for DCRX Infusion. She has served on the American Society for Parenteral and Enteral Nutrition board of directors and is currently on the American Dietetic Association board of directors. She has published peer-reviewed journals and textbooks and given numerous professional presentations on topics related to nutrition support.
A Case Study
Barry* is a 59-year-old male with gastric carcinoma who underwent a total gastrectomy four months ago and is undergoing chemotherapy.
• Note: Barry and his wife should be encouraged to discuss what to do if the therapy is unsuccessful. The time to start the discussion and document the patient’s wishes is before end-of-life decisions must be made.
Barry has severe nausea, vomiting, and diarrhea. Pharmacotherapy reduces but does not alleviate his symptoms. He has lost 6% of his usual body weight over the past three months. He and his wife are told that the weight loss is a consequence of his therapy and will improve when his cancer is in remission.
• Note: Weight loss is often considered an inevitable consequence of cancer therapy. Nutrition intervention at this point may prevent ongoing nutritional and physical deterioration.
Barry finishes chemotherapy, but dumping syndrome continues to cause diarrhea and nausea, resulting in poor dietary intake and continued weight loss. At his six-month checkup, Barry is diagnosed with recurrent cancer that is not resectable and is causing a partial small-bowel obstruction. Over the next six weeks, his health deteriorates, and he is bedridden with an increased requirement for pain management, resulting in impaired mental acuity and an inability to tolerate solid food. His cumulative weight loss since the initiation of symptoms is 15% of usual body weight. Barry’s physician tells his wife that his prognosis is poor and asks if she would like to consider hospice. She views hospice as “giving up” and is frightened that her husband is starving to death. She does agree to hospice but wants her husband to be fed.
• Note: Having a frank and compassionate discussion with Barry’s wife may help her weigh the pros and cons of nutrition support and hospice at this stage of her husband’s illness.
The infusion of parenteral nutrition (PN) results in hospice’s denial to serve Barry. Barry’s wife attempts to manage his care at home, but the discomfort for him with routine blood work and her fatigue from sleepless nights due to pump alarms and his pulmonary wheezing increase her frustration and fears. Ultimately, after consulting again with her husband’s physician and her spiritual advisor, Barry’s wife decides to stop the PN. Barry is admitted to hospice. Ten days later, he dies.
This case exemplifies the misunderstanding and miscommunication that can hinder providing nutrition support at the end of life. A discussion between the husband and wife at the initiation of curative therapy about what to do if curative therapy is not successful, more attention to the patient’s deteriorating nutritional status prior to the referral for hospice, a better explanation of what hospice can provide, and a frank discussion of the benefits and burdens of nutrition support throughout the course of the patient’s treatment and end-of-life care could have helped the patient’s wife make difficult end-of-life decisions with less fear and guilt.
*Name is fictitious.
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