Nutrition and Hydration at the End of Life

Nutrition and Hydration at the End of Life Alice Fornari, Ed.D., RD Afornari@aecom.yu.edu

Quote from James Cimino, MD “Patients receiving palliative care may receive nutrition repletion or comfort care. Non abandonment is a fundamental principle of nutrition support of advanced cancer patients.”

Ethics Analysis Triangle • Virtues: integrity, respect, compassion • Doing what fits the situation and taking responsibility for actions • Seeing the situation from the perspective of the other person • Rules • Goals • Compromise: finding middle ground between you and the other

Rules/Principles • Autonomy: respect self-determination of each person • Beneficence: do good for each person • Nonmaleficence-do no harm to any person • Justice: treat each person with fairness

Goals of Patient Care • Achieve Health • Maximize Human Flourishing • Provide Care • Minimize Human Suffering

Action Requires Justification • Questions to ask to justify actions: • Have we done what is right, good and fitting? • Have we honored autonomy? • Have we maintained respect for others? • Have we maximized flourishing and minimized suffering?

Three Landmark Cases Are nutrition and hydration medical procedures? • Karen Ann Quinlin (1975) • Nancy Cruzan (1980s-90) • Helga Wanglie (1990s) • Ethical and legal issues in nutrition, hydration and feeding-Position of ADA. J Am Diet Assoc. 2002; 102:716-726.

Common Questions • Is artificial hydration and nutrition medical therapy? • If yes, then this decision is subject to the usual standards for medical decision making • Are medically provided hydration and nutrition simply “food and water?” • If yes, hydration and nutrition are basic and ordinary measures which may never be refused, withdrawn, or withheld.

MYTH-Reality • Withholding or withdrawing of artificial fluids and nutrition from terminally ill or permanently unconscious patients is illegal • Like any other medical treatment, fluids and nutrition may be withheld or withdrawn if the patient refuses them or, in the case of an incapacitated patient, if the appropriate surrogate decision-making standard is met • Meisel, A., Snyder L, Quill T. Seven legal barriers to end-of-life care. Myths, realities, and grains of truth. JAMA 2000; 284:2496.

American Dietetic Association Position Statement on Nutrition, Hydration and Feeding • The development of clinical and ethical criteria for the nutrition and hydration of persons through the life span should be established by members of the health care team. Dietetic professionals should work collaboratively to make nutrition, hydration and feeding recommendations in individual cases. • Ethical and legal issues in nutrition, hydration and feeding-Position of ADA. J Am Diet Assoc. 2002; 102:716-726.

Summary Guidelines for Feeding • Feeding should start immediately when the patient is medically stable • Feedings should maintain a reasonable weight, maintain muscle mass, and achieve hydration • Do not feed or stop feeding if medically contraindicated • Stop the feeding if there is evidence of the patient’s wish to stop nutrition and hydration

Where does the Decision Making Begin • Ask these questions: • What does or would the patient want? • What does the patient consider quality of life? • What are the goals of therapy? • Will the treatment, i.e. nutrition and hydration, benefit the patient? What are the risks? • Does evidence –based medicine support the desires of the patient?

NY Health Care Proxy Law • Takes into account the societal difference of opinion on hydration and nutrition • In the case of withholding or withdrawal of artificial hydration and nutrition, if the patient’s wishes “ are not reasonably known and cannot with reasonable diligence be ascertained”, the law provides that “ the agent shall NOT have the authority to make decisions regarding these measures”.

NYS Law-cont. • Advise patients (who may want their agent to prevent or discontinue these measures) to specifically authorize their agent to withhold or withdraw artificial nutrition or hydration on the proxy form. • If not documented specifically, the patient should state on the proxy form that his or her agent “knows” their wishes on this treatment.

Case Scenerio • Mrs. Y, an 89-year-0ld woman, was an eight-year resident of a skilled nursing facility (SNF), living in the same room since admission. During this time, she was diagnosed with a dementia that was now fairly advanced. She was alert and able to recognize individual members of the nursing home staff. Her daughter was her closest relative and was quite involved in her care. Mrs. Y spoke only Greek despite living in the United States for many years. Apparently she had spent most of her time at home and had been dependent on her late husband for all communication and interaction with the non-Greek community. After suffering pneumonia a few weeks previously, her appetite diminished. She experienced a significant decline in her body weight and developed a decubitus ulcer that was somewhat painful. Her daughter reluctantly agreed to the placement of a nasogastric tube, voicing concerns over her mother’s possible discomfort with the tube. Mrs. Y regained much of the lost weight. However, the tube repeatedly became dislodged and was finally removed altogether. • Mrs. Y again began to lose weight. The care team recommended placement of a percutaneous endoscopic gastrostomy (PEG) tube. However, the nursing facility would require that Mrs. Y be transferred to a different unit for residents with greater care needs. Mrs. Y’s daughter said she rather have her mother die than be moved from her “home”. However, she agreed to the gastrostomy on the condition for no change in residence. Mrs. Y never executed a formal advance directive and the daughter admitted to no direct knowledge of her mother’s preferences regarding artificial nutrition. She recalled her mother stating that she “never wanted to become a burden” to her children. She also recalled that the patient’s cousin had throat cancer and lived for many years at home with a feeding tube. Mrs. Y had remarked that she was thankful that the tube allowed him to have a decent life despite the cancer. • The SNF complied with the daughter’s request. The PEG was placed. During the next 6 months, Mrs. Y suffered from cellulites at the PEG site, and was sent to the hospital for endoscopic replacement of the tube after it fractured. She gradually became nonverbal and did not recognize her family but was alert and apparently comfortable. The tube became clogged and nonfunctional. The SNF contacted the daughter to have the tube replaced, but the daughter refused stating that her mother “had no life” and that she should be left in peace. Her caregivers told the daughter that you “can’t starve her to death”. • A bioethics consultation was called.

Decision Making to Initiate or Continue Artificial Nutrition and/or HydrationEmanuel, LL, von Gunten CJ, Ferris FD, Education for physicians on end of life care/Institute for Ethics at the AMA. Chicago, Il: EPEC Project, The Robert Wood Johnson Foundation, 1999. Unspoken premise: food and water are symbols of caring • Is the primary goal palliative care? • Is the outcome of the disease inevitable and the intervention will not change this outcome? • Does intervention prolong the dying process and/or cause suffering? • Is cognitive impairment irreversible?

Decision Making to Initiate or Continue Artificial Nutrition and/or Hydration-cont. • Does the intervention cause complications? • Does the patient have end-stage organ failure and/or end-stage disease? • Is the patient profoundly impaired by a stroke and will not be able to swallow? • Does the risk exceed the benefit? • Is the quality of life verbalized as poor by the patient?

AAFP End of Life Care • Total of 11 principles to guide care provided at end of life. (http://aafp.org) • Beliefs: • Focus on quality, compassionate patient care • Stay current and competent in knowledge and skills in palliative medicine and medical management • Support the medical, psychological and spirtial needs of the patient and family • Dialogue with patients, family and society to explore what is reasonable and morally appropriate

Physician and Team Member Responsibilities • Know state laws on living wills and durable powers of attorney • Have knowledge on risk-benefit ratio with medical treatments • Discuss life-sustaining measures with patients before a medial emergency occurs • Document in medical record discussions and patient wishes • Maintain any legal documents in the patient’s medical record and as appropriate review with patient • Review the information with patient and family as circumstances warrant • These support the AMA’s “Current Opinions of the Council on Ethical and Judicial Affairs.” (http://www.ama-assn.org/ama/pub/category/2498.html )

Concerns of Physicians/Health Care Providers • Are physicians legally required to provide all life-sustaining measures possible? • No. Patients have the right to refuse any medical treatment, even artificial hydration and nutrition • Is withdrawal or withholding of treatment equivalent to euthanasia? • No. There is a strong general consensus that withdrawal or with holding treatment is a decision that allows the disease to progress on its natural course. It is not a decision to seek death and end of life. • Ackerman, RJ Withholding and Withdrawing Life-Sustaining Treatment, Am Fam Phys, October 1, 2000.

EBM Summary on Artificial Nutritional Support • In a terminally ill patient, it is an emotional response to the clinical situation • Not proven to be clinically beneficial • Terminally ill patients with cancer have uniformly shown that treatment with parenteral nutrition provides no survival benefit and does not improve response to chemotherapy • Quality studies have consistently demonstrated no benefit from the use of nutritional support in patients at or near the end of life • Brooke GB Artificial Nutritional Support at End of Life: Is it Justifiable? Am Fam Phy July 1 2001.

Using EBM • Using evidence to guide treatment is wise but physicians must avoid the “slippery slope” of providing no intervention for vulnerable patients. • Brooke GB Artificial Nutritional Support at End of Life: Is it Justifiable? Am Fam Phy July 1 2001.

Terminal Nutrition-SummaryWinter SM. Terminal Nutrition: framing the debate for the withdrawal of nutrition support in terminally ill patients. Am J Med December 15, 2000; 109:723-6 • Decisions about nutritional support at the end of life are influenced by emotional associations and personal experiences • These experiences do not correspond well with end-of-life experience • Viewing nutritional support as a treatment, not as a unique therapy, allows a more objective appraisal of its value in end-of life care • Use the same standards applied to other treatment decisions

Summary-cont. • There is no evidence that nutritional support prolongs life or decreases morbidity in patients with cancer, sepsis, or advanced cardiac or respiratory disease • It is inferred that nutritional support will also fail at modifying disease progression in dying patients • Nutritional support also carries potential harm from complications of access and feeding

Summary-cont. • Withholding unrequested nutrition appears to have effects that may enhance patient comfort and well being, an appropriate goal for end-of-life care • Appetite may be reduced or abolished based on ketosis • Increased comfort secondary to reductions in GI, respiratory and urinary output • These benefits are consistent with physiologic effects of starvation

Concluding Quote “With the rise of interest in evidence-based medicine, some have questioned whether this new medical “movement” is fully compatible with ethics and humanism in medical practice. At least in the instance of artificial nutrition and hydration at the end of life, EBM is more compatible with good medical ethics-without the solid evidence base, the ethical question cannot be properly answered.” • Brody H. Evidence-based Medicine, nutritional support and terminal suffering. Am J Med December 15, 2000; 109:740-741.

Nutrition and Hydration at the End of Life