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Artificial Nutrition and Hydration in EOL

Tiffany Gonzales, MD

Department of Palliative and Supportive Cares

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Artificial Nutrition and Hydration (ANH)

ANH

A medical procedure that involves placing a tube or needle into the alimentary tract, into a vein, or under the skin to deliver fluids and nutrients1,2,3

Evidence - Survival

A large prospective study of patients with dementia in the US nursing homes who had developed recent difficulties in eating showed that a feeding tube insertion did not result in a survival benefit.

DEMENTIA

Teno JM, Gozalo PL, Mitchell SL, et al. Does feeding tube insertion and its timing improve survival? J Am Geriatr Soc. 2012;60(10):1918-1921.

Smaller observational studies involving patients with dementia suggest a lack of evidence of prolonged survival rates associated with the use of ANH.

Rydvall A, Lynoe N. Withholding and withdrawing life-sustaining treatment: a comparative study of the ethical reasoning of physicians and the general public Crit Care. 2008;12(1):R13.

National Council for Hospice and Specialist Palliative Care Services. Key Ethical Issues in Palliative Care: Evidence to House of Lords Select Committee on Medical Ethics. London, UK: National Council for Hospice and Specialist Palliative Care Services; 1993.

Curtis JR, Vincent JL. Ethics and end-of-life care for adults in the intensive care unit. Lancet. 2010;376(9749):1347-1353.

Evidence - quality of life

Tube feedings likely increase the risk for aspiration in patients with AD.

National Council for Hospice and Specialist Palliative Care Services. Key Ethical Issues in Palliative Care: Evidence to House of Lords Select Committee on Medical Ethics. London, UK: National Council for Hospice and Specialist Palliative Care Services; 1993.

Evidence -

Quality of Life

Despite patients receiving adequate calories from tube feedings administered in long-term care facilities, evidence suggests that these patients may experience continued weight loss and depletion of lean and fat body mass.

Mitchell BL, Mitchell LC. Review of the literature on cultural competence and end-of-life treatment decisions: the role of the hospitalist. J Natl Med Assoc. 2009; 101(9):920-926.

No studies have provided evidence that ANH improves healing rate of pressure ulcers or other infections.

National Council for Hospice and Specialist Palliative Care Services. Key Ethical Issues in Palliative Care: Evidence to House of Lords Select Committee on Medical Ethics. London, UK: National Council for Hospice and Specialist Palliative Care Services; 1993.

Curtis JR, Vincent JL. Ethics and end-of-life care for adults in the intensive care unit. Lancet. 2010;376(9749):1347-1353.

Hall S, Longhurst S, Higginson IJ. Challenges to conducting research with older people living in nursing homes. BMC Geriatr. 2009;9:38.

In fact, among patients with AD, feeding tubes are not associated with improved pressure ulcer healing, and appear to be associated with an increased risk of developing new pressure ulcers.

Teno JM, Gozalo P, Mitchell SL, Kuo S, Fulton AT, Mor V. Feeding tubes and the prevention or healing of pressure ulcers. Arch Intern Med. 2012;172(9):697-701.

Patients with dementia may pull on their PEG tubes, leading inpatient or nursing home staff to use restraining devices, which can exacerbate delirium or agitation, and also can worsen pressure ulcers.

Feeding tube-related complications accounted for 47% of ER visits in one prospective study of nursing home patients with AD.

Givens JL, Selby K, Goldfeld KS, Mitchell SL. Hospital transfers of nursing home residents with advanced dementia. J Am Geriatr Soc. 2012;60(5):905-909.

DEMENTIA prevalence 2022

Alzheimer’s Association. 2022 Alzheimer’s Disease Facts and Figures. Alzheimers Dement 2022;18

CASCADE

CASCADE

(choices, attitudes, and strategies for care of advanced dementia at the end of life)

Followed older adults with advanced dementia in 22 nursing homes over 18 months.

Mortality was 25% at 6 months and 55% at 18 months.

Almost 90% developed eating problems as part of the progression of AD4.

Mitchell SL, Teno JM, Kiely DK, et al. The clinical course of advanced dementia. N Engl J Med. 2009;361(16):1529-1538.

Subsequently, a number of practice guidelines and position statements have been published, advocating for careful hand-feeding and the avoidance of feeding tubes in patients with AD.

American Geriatrics Society feeding tubes in advanced dementia position statement. J Am Geriatr Soc.2014;62(8):1590-1593.

American Academy of Hospice and Palliative Medicine. Five Things Physicians and Patients Should Question. 2013; http://www.choosingwisely.org/societies/american-academy-of-hospice-and-pallliative-medicine/ Accessed May 31, 2017.

Evidence or lack thereof...

Evidence regarding ANH for cancer patients is difficult to interpret given the heterogenous nature of the cancer population, including cancer type and disease progression.

CANCER5

A recent systematic review found a lack of high-quality studies to guide practice recommendations regarding ANH for patients receiving palliative care.

Good P, Richard R, Symris W, Jenkins-Marsh S, Stephens J. Medically assisted nutrition for adult palliative care patients. Cochrane Database Syst Rev. 2014(4):Cd006274.

Evidence - survival

There exist a few uncontrolled prospective studies that suggest there may be a role for ANH in patients with a prognosis of more than weeks to months, but the decision needs to be highly individualized.

Evidence

-Survival

Several smaller, observational studies suggest that a subset of patients receiving total parenteral nutrition (TPN) experience increased survival rates of at least 3 months.

American Academy of Hospice and Palliative Medicine. AAHPM Position Statement on Withholding and Withdrawing Non Beneficial Medical Interventions. http://aahpm.org/positoins/withholding-nonbeneficial-interventions. Accessed January 11, 2012.

Gillick MR. Rethinking the role of tube feeding in patients with advanced dementia.

N Engl J Med. 2000;324(3):206-210.

In a Mayo Clinic study, conducted over a 20-year period (1979-1999), involving 52 patients with a variety of cancers (most with bowel obstruction or malabsorption receiving home TPN), 16 survived for 1 year or longer.

The investigators were not able to identify predictors for long-term survival and instead concluded that use of TPN must be determined on a case-by-case basis.

Gillick MR. Rethinking the role of tube feeding in patients with advanced dementia. N Engl J Med. 2000;324(3):206-210.

In cases of ovarian cancer complicated by bowel obstruction, one small study noted modest benefit (approximately 2 weeks of extended survival), and another study showed no benefit with the use of TPN. 6

Good P, Cavenagh J, Mather M, Ravenscroft P. Medically assisted hydration for palliative care patients. Cochrane Database Syst Rev. 2008(2):CD006273.

Ganzini L, Goy ER, Miller LL, Harvath TA, Jackson A, Delorit MA. Nurses' experiences with hospice patients who refuse food and fliuds to hasten death. N Engl J Med. 2003;349(4):359-365.

Conversely, meta-analysis shows that TPN for patients with cancer receiving chemotherapy is associated with decreased survival, decreased response to chemotherapy, and an increased rate of infection.7

Fuhrman MP, Herrmann VM. Bridging the continuum: nutrition support in palliative and hospice care. Nutr Clin Pract. 2006;21(2):134-141.

Importantly, significant potential adverse effects associated with TPN include infection, hepatic dysfunction, electrolyte abnormalities, and thrombosis. Quality of life and patient considerations include the need for frequent monitoring of electrolytes and cost.

Hui D, Dev R, Bruera E. The last days of life: symptoms burden and impact on nutrition and hydration in cancer patients. Curr Opin Support Palliat Care. 2015;9(3):346-354.

Withdrawal of ANH: Ethical Considerations

Issues:

ETHICS

Debate and uncertainty among the general public and some care providers about whether this is a basic need or a medical intervention.

The fear of death by starvation and dehydration remains an emotionally charged subject.

The public dialogue has focused mostly on ANH for younger patients in persistent vegetative states as opposed to adults dying of underlying terminal illnesses. 8

McCann RM, Hall WJ, Groth-Juncker A. Comfort care for terminally ill patients. The appropriate use of nutrition and hydration. JAMA. 1994;272(16):1263-1266.

Tresch DD, Sims FH, Duthie EH, Jr., Goldstein MD. Patients in a persistent vegetative state attitudes and reactions of family members. J Am eriatr Soc. 1991;39(1):17-21.

Preston T, Kelly M. A medical ethics assessment of the case of Terri Schiavo. Death Stud. 2006;30(2):121-133.

When asked to rank their likelihood of withdrawing eight life-sustaining treatments, a group of 481 physicians indicated they would be least likely to withdraw tube feedings and intravenous fluids. (blood products --> HD --> pressors --> TPN --> Abx --> vent --> TF --> IVF)

Christakis NA, Asch DA. Biases in how physicians choose to withdraw life support. Lancet. 1993;342(8872):642-646.

Often, understanding the patient's or surrogate's spiritual and faith background can be helpful to guide decision making. 9

Catholic Healthcare Directives

The 2009 version of Ethical and Religious Directives for Health Care Services, 5th edition (the norms adopted by Catholic bishops in the US that apply to Catholic hospitals)

CATHOLIC

STANCE

A person has a moral obligation to use ordinary or proportionate means of preserving his or her life. Proportionate means are those that in the judgement of the patient offer a reasonable hope of benefit and do not entail an excessive burden or impose excessive expense on the family or community.

A person may forgo extraordinary or disproportionate means of preserving life. Disproportionate means are those that in the judgement of the patient do not offer a reasonable hope of benefit and entail an excessive burden or impose excessive expense on the family or community.

In principle, there is an obligation to provide patients with food and water, including medically assisted nutrition and hydration for those who cannot take food orally. This obligation extends to patients in chronic and presumably irreversible conditions who can reasonably be expected to live indefinitely if given such care.

ANH becomes morally optional when they cannot reasonably be expected to prolong life or when they would be "excessively burdensome for the patient or would cause significant physical discomfort".

The free and informed judgment made by a competent adult patient concerning the use or withdrawal of life-sustaining procedures should always be respected and morally complied with, unless it is contrary to Catholic moral teaching. 10

Judicial consensus

ANH is a medical treatment and may be refused under the same standards as other medical treatments.

There is now no question that adult patients with decision-making capacity can refuse ANH.

JUDICIAL

CONSENSUS

Meisel A, Cerninara KL. Right to Die: The Law of End-of-Life Decisoin Making. 3rd ed. Riverwoods, IL: Aspen Publishers; 2011.

Some states by statute limit the right of surrogates to refuse ANH. In some states, withholding or withdrawing ANH from incapacitated patients who are not terminally ill may require court approval or other requirement such as proof of the patient's wishes by "clear and convincing" evidence. 11

Meisel A, Cerninara KL. Right to Die: The Law of End-of-Life Decisoin Making. 3rd ed. Riverwoods, IL: Aspen Publishers; 2011.

Cruzan c Director, Missouri Department of Health, 497 US 261 (1990).

AAHPM Statement on Artificial Nutrition and Hydration Near the End of Life

Approved by the AAHPM Board of Directors September 13, 2013

last accessed 12/28/2022

AAHPM endorses the ethically and legally accepted view that ANH is a medical intervention.

AAHPM STATEMENT

Like other medical interventions, it should be evaluated by weighing its benefits and burdens in light of the patient's clinical circumstances and goals of care.

ANH may offer benefits when administered in the setting of acute, reversible illness, or as a component of chronic disease management, when the patient can appreciate the benefits of the treatment and significant burdens are not disproportionate.

Near the end of life, some widely assumed benefits of ANH, such as alleviation of thirst, may be achieved by less invasive measures including good mouth care or providing ice chips.

The potential burdens of ANH depend on the route used and include sepsis (with TPN), aspiration, diarrhea (with tube feeding), pressure sores and skin breakdowns, and complications due to fluid overload.

In addition, agitated or confused patients receiving ANH may need to be physically restrained to prevent them from removing a gastrostomy tube, nasogastric tube, or central intravenous line.

The patient and family should also understand that appropriate medical interventions would continue, even if ANH is not implemented.

AAHPM recognizes that in some faith traditions ANH is considered basic sustenance, and for some patients and families, ANH is of symbolic importance, apart from any measurable benefits for the patient's physical well-being. Such views should be explored, understood, and respected, in keeping with patient and family values, beliefs, and culture.

Communications is necessary to allow caregivers to learn about patient and family fears about "starvation" and other frequently expressed concerns. It is essential to explain the patient's clinical condition and that the inability to eat and drink can be a natural part of dying that is generally not associated with suffering.

AAHPM advocates respectful and informed discussions of the effects of ANH near the EOL among physicians, other healthcare professionals, patients and families, preferably before the patient is close to death.

When a time-limited trail of ANH is pursued, clear, measurable end points should be determined at the beginning of the trial. The care giving team should explain that, as with other medical therapies, ANH can be withdrawn if it is not achieving its desired purpose.

Recognize that ANH is a form of medical therapy that, like other medical interventions, should be evaluated by weighing its benefits and burdens in light of the patient's goals of care and clinical circumstances.

Acknlowedge that ANH, like other medical interventions, can ethically be withheld or withdrawn, consistent with the patient's wishes and the clinical situation.

KEY ELEMENT

Establish open communication between patients/families and caregivers, to assure that their concerns are heard and that the natural history of advanced disease is clarified.

Respect patient's preferences for treatment, once the prognosis and anticipated trajectory with and without ANH have been explained.