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Healthcare still has far to go in exploring the complex medical and emotional issues in end-of-life care.

Death is a part of life. The way we die is dependent on the medical culture in which we practice. Modern technology, with its curative focus, has left little room in medical schools for end-of-life education and is only recently beginning to make a comeback across disciplines.1,2 Physicians are frequently unaware of patients’ choices. Ethnicity is not factored into the current use of advance directives, further diminishing the already poor communication that currently exists between clinicians, patients, and families.3 Ironically, a patient’s fear of poor prognosis further inhibits communication.4 Consequently, the terminal diagnosis often occurs too late to provide a patient a meaningful death experience.

Ethical Culture
There are four generally accepted principles used in bioethics: 1) autonomy, or self-determination; 2) beneficence, or acting in the patient’s best interest; 3) nonmaleficence, or doing no harm; and 4) justice, or fairness in care.5

According to noted palliative care expert Ira Byock, MD, our ethical culture is structured to emphasize autonomy and justice at the expense of beneficence, thus leading to our current dilemma in end-of-life care. While legal precedence continues to uphold a person’s right to self-determination, the medical community has focused on saving life for the sake of quantity instead of quality. This situation is compounded by the problem-oriented approach to medicine, which reduces patient evaluation to specific measurable clinically related issues, thus failing to identify the essence of an individual to determine best interest.

Patient Autonomy, Beneficence, and the Dying Person
The problem-oriented approach to medicine views people as patients with a list of clinical issues that need to be resolved. Sparing a patient from advice or counsel because of the clinician’s fear or other personal feelings violates beneficence and autonomy by inhibiting a patient’s ability to make an informed choice to accept or reject treatment. This approach employs the political definition of autonomy more than its fundamental core, therefore emphasizing equality and universality over the sanctity and sacredness of the individual that cannot be separated from gender, race, culture, and religion.6 Respect means listening with compassion about each patient’s situation to ensure medical decisions align with his or her desires and beliefs.7 If the patient’s wishes conflict with medical recommendations, it would be considered abandonment if thorough communication was not completed.

Advance Directives and Cultural Diversity
Universality is assumed in modern bioethics, rendering minimal attention to ethnic and cultural diversity. There are also the assumptions that healthcare providers offer real choices to patients rather than simply verbalizing medical terminology, and that both patients and providers have equal positions in the relationship.8

Cultural differences affect our ability to communicate and perceive relationships. European American and African American studies show tendencies to favor the right to self-determination, whereas Mexican and Asian Americans prefer a family-centered model of medical decision making. African Americans consistently prefer life support more than other ethnic groups and disclose wishes to their family instead of physicians. Asian and Mexican Americans are less likely to want disclosure of a terminal prognosis, believing patients should not decide this issue. Advance directives are perceived as irrelevant in the family-centered model and can become a source of frustration with healthcare’s demands to make choices. Studies also show that not all patients desire disclosure of terminal status independent of ethnicity.9-12

Although it is important not to stereotype cultures based on preconceived biases or views, this research demonstrates the need for cultural sensitivity and exploration of wishes regarding truth disclosure.

Inappropriate Use of Gastrostomy Tubes in Dementia
Medical advances enabling easier placement of gastrostomy tubes in the 1990s led to a dramatic increase in tube insertions—from 61,000 in 1988 to 121,000 in 1995. Approximately 30% of these patients had dementia, the perception being that the disease is not terminal, even though the loss of ability for oral intake occurs in the final stages. Studies of percutaneous endoscopic gastrostomy (PEG) tubes and older adults with dementia have shown 30 day post-PEG insertion mortality rate to be as high as 25% to 30%.13,14

Review of literature from 1966 through 1999 revealed no evidence that tube feeding with advanced dementia prevented aspiration pneumonia, prolonged survival, reduced risk of pressure sores or infections, improved function, or provided palliation.15 No data was found to demonstrate decreased risk of aspiration between jejunostomy tubes and gastrostomy tubes. Continued risk of aspiration in this population was attributed to reflux of gastric contents and aspiration of oropharyngeal secretions.16 No difference was found between groups treated with and without tube feeding among 1,386 patients with recent progression to severe dementia.17 Problems associated with PEG tube placement appear to cause suffering, with long-term complications reported at a range of 32% to 70%.15,16,18

Fewer feeding tubes were noted in more communicative environments. Nursing home traits associated with higher use of tube feeding in dementia included for-profit status and lack of special care for dementia—implying a financial motive because of the greater reimbursement rate and less staff time necessary for tube-fed patients. State-stipulated weight loss and dehydration regulations were also cited as a potential factor.17,19

These findings magnify the lack of beneficence seen in many nursing home settings driven by profit and regulations. Since it is not cost effective to employ enough staff to provide appropriate social and sensory stimulation, these patients are deprived the simple pleasure of ordinary care that nurtures the spirit and provides pleasure, socialization, and mental stimulation. It would be interesting to observe the effects of such nurturing care on those not yet in the final stages of dementia on prolonging cognitive decline.

Withdrawal of Life Support
Physicians have been challenged in applying clinical ethics to real-life patient care conflicts, especially when patients are unable to exercise their autonomy.20 Modern technology has turned many finite decisions into a game of balancing quantity of life with life without quality. This is especially true in the intensive care unit where the rule is to rescue, since “the certainty of futility is difficult to determine and misunderstanding about quantitative and qualitative futility is widespread among medical residents.”4 A study of 1,446 physicians—34% who were medical attending and 45% surgical attending—believed nutrition and hydration should always be continued even if all other forms of life support were stopped.18 There is a greater tendency in pediatrics to seek cure despite burden of treatment. Research has demonstrated great variability between pediatric intensive care unit physicians and oncologists on life support issues.21

Overestimation of prognosis by physicians may cause patients to request futile care.22 Overestimation of prognosis by critically ill patients and families has been associated with choosing more life-sustaining treatment—even if inappropriate.4 This is one of the greatest challenges in decision making, since the protective mechanism eliciting emotions such as hope and denial of impending death by the patient and family inhibit frank discussion of prognosis.

Current clinical ethics has replaced the words “ordinary” and “extraordinary” with “proportionate” and “disproportionate” in differentiating between obligatory and nonobligatory care. This is because extraordinary care is actually relative to the patient’s condition; what may be ordinary for one may be considered extraordinary for another. An example of proportionate vs. disproportionate care may be a feeding tube-dependent patient with amyotrophic lateral sclerosis vs. an end-stage patient with dementia. What is determined as disproportionate and burdensome is relative to the perceiver, and therefore dependent on autonomy. Every situation is unique, requiring rigorous evaluation to ensure a patient’s rights are followed.

In the recent Schiavo case, legal precedence once again upheld the American Medical Association’s position that “in certain limited circumstances life prolonging medical treatment, including medication and artificially or technologically applied respiration, nutrition, or hydration may be stopped or withheld.”23 However, the recent allocution of Pope John Paul II has caused great consternation in both Catholic and non-Catholic Americans by reducing “the administration of water and food, even when provided by artificial means” to ordinary and proportionate care.24 This statement appears to defy autonomy, beneficence, and maleficence for the sake of justice, since the patient’s perception of disproportionate or burdensome care would not matter. It also ignores why the term ordinary was changed to proportionate. Nutrition support would be mandated for all patients in a persistant vegetative state even if against their wishes—whether stated or not.

Many Catholic bishops and ethicists believe this viewpoint is contrary to more than 500 years of theological analysis, and that it even contradicts the pope’s previous statements. Kevin O’Rourke, a renowned Catholic bioethicist, notes that there are two variables involved—the extraordinary medical intervention and the ordinary nutrition infused into the intervention. Regardless of what it is called, benefit and burden still need to be evaluated in each situation, says O’Rourke. The current division is hoped to be addressed by Pope John Paul II’s successor. In the meantime, while some of the more than 500 American Catholic hospitals have changed feeding tube policies, others maintain current protocol since an allocution is not dogma and subject to ethical review.25-27

Withdrawal of Life Support vs. Euthanasia
It is difficult to find current literature not equating withdrawal of nutrition support with euthanasia. One exception is the statement on euthanasia and physician-assisted suicide made by physician and bioethics professor Paulina Taboada, MD, PhD, on behalf of the European Association of Palliative Care Task Force: “To argue that it is morally justified to omit certain medical interventions in order to allow a person to die with dignity is not equivalent to supporting so-called passive euthanasia. The act of withholding or withdrawing disproportionate treatments because they are disproportionate is morally different from the act of omitting proportionate treatments with the active intention to hasten death.” She further states that neither withholding nor withdrawing futile treatments can be considered as euthanasia.28 This view mirrors accepted bioethical principles and legal precendence.

Dehydration
There is a current debate regarding whether terminal patients in imminent death benefit from dehydration. Limited scientific research exists on this topic. Dehydration has been well accepted in the hospice community as a compassionate measure that decreases secretions, urine output, edema, and ascites while causing a euphoric effect that calms the patient. Studies have shown dehydration to be isotonic in the dying patient; discounting symptoms attributed to hyper or hyponatremia and osmolality changes. The euphoric effect has been attributed to endogenous opioid production along with ketosis from lack of food intake which has been shown in animal studies.29,30 No relationship has been demonstrated between thirst and fluid intake; easily ameliorated by small sips of fluid and ice chips.31 Also, research has shown the most significant association with thirst in terminal dehydrated patients to be oral disease.32

Hydration, on the other hand, has been shown in some studies to decrease the incidence of delirium caused by opioid neurotoxicity due to reduced renal clearance. Hypodermoclysis and protoclysis have been suggested as alternates to parenteral administration due to greater comfort and no skilled need for administration.33,34 Arguments against hydration due to fluid overload do not account for judicial use of hydration. A recent study, however, demonstrated increased peripheral edema, ascites, and pleural effusions with modest hydration and no difference in bronchial secretion or delirium.35

The dying patient can achieve fluid balance with minimal volume and is much more sensitive to fluid changes. Until more research is available, the decision to use hydration with imminent death must be done with respect for patient wishes only after careful assessment of the problems and symptoms related to dehydration.

Voluntary Refusal of Nutrition and Hydration
One of the most challenging movements in today’s society is the choice of patients to end their life through refusal of oral intake of food and fluids. While one must respect patient autonomy, the refusal of ordinary, proportionate care poses a new challenge. Fueling this trend is a survey completed by hospice nurses in Oregon demonstrating a positive death experience for those patients who chose to hasten their inevitable demise by refusing food and fluids.36 These results reverberate other observational data seen over the last two decades that demonstrated absence of hunger and a sense of well-being.37-39

Voluntary refusal of food and fluids is regarded as voluntary, passive euthanasia since the medical team honors a competent patient’s refusal of intake with the full knowledge that death will result sooner than the natural course of illness. This fits into the larger category of voluntary refusal of nutrition and hydration (VRNH) and in this context has been related to the same ethical rationale as withdrawal of nutrition support.

It is considered essential to evaluate any person considering VRNH for clinical depression, as well as evaluating psychosocial factors that may make a difference to such a decision. If clinical depression is ruled out and a person still desires VRNH, it may be from a “felt sense of being done” as noted by Byock in a number of his patients at end of life. In his words these patients “expressed a sense that eating or drinking were no longer relevant to their situation. They were far along in a process of withdrawal, having turned their attention inward or beyond.”32

Clinical guidelines reflected in the Annals of Internal Medicine position paper on dying patients’ voluntary refusal of food and fluids have recommended that addressing the ability to understand all aspects of therapy and means of alleviating suffering are essential so an informed exercise in autonomy can be made. Ruling out clinical depression and exploring other options that may enhance patient quality of life are also necessary. If the desire for VRNH persists, then the patient’s wishes should be honored, while maintaining the goal of palliation and optimal quality of life. If clinician involvement is an infringement on personal beliefs, consultation with an ethics committee and possible transfer of care is advised.40 These recommendations are meant for patients with advanced terminal illness.

No such guidelines were noted regarding patients without terminal disease who consider VRNH as a means to end a life without benefit. Even when considering the burdens of their situation, the absence of inevitable death without VRNH challenges ethical principles.

The Hospice and Palliative Care Subunit under the American Dietetic Association’s Oncology Practice Group has a listserv where dietitians can share information, experiences, and ideas on end-of-life care. New members are always welcomed.

— Anne Cox, MS, RD, is a hospice dietitian for Genesys Home Health and Hospice Care in Michigan and secretary of the American Dietetic Association Oncology Dietetic Practice Group.

References
1. Byock I. The ethics of loving care. Health Prog. 2004;85(4):12-19,57.

2. Open Society Institute. Palliative Care Education. Available at: http://www.soros.org/initiatives/pdia/articlespublications. Accessed November 29, 2005.

3. Hallenbeck JL. Palliative Care Perspectives. New York: Oxford University Press, 2003.

4. Sullivan M. Hope and hopelessness at the end of life. Am J Geriatr Psychiatry. 2003;11:393-405.

5. American Academy of Physician Assistants. Policy: End-of-Life Decision Making. Available at: http://www.aapa.org/gandp/eol.html. Accessed November 28, 2005.

6. Acton Institute. A nation in religious denial. Available at: http://www.acton.org. Accessed November 28, 2005.

7. Quill T, Brody H. Physician recommendations and patient autonomy. Ann Intern Med. 1996;125(9):763-769.

8. National Academies Press. Field MJ, Cassel CK, Eds. Approaching death: Improving care at the end of life. Available at: http://www.nap.edu/readingroom/books/approaching. Accessed November 28, 2005.
9. Kwak J, Haley WE. Current research findings on end-of-life decision making among racially or ethnically diverse groups. The Gerentologist. 2005;45(5):634-641.

10. Perkins HS, Geppert CM, Gonzales A, et al. Cross-cultural similarities and differences in attitudes about advance care planning. J Gen Intern Med. 2002;17(1):48-57.
11. Blackhall LJ, Murphy ST, Frank G, et al. Ethnicity and attitudes toward patient autonomy. JAMA. 1995;274(10):820-825.

12. Keating D, Nayeem K, Gilmartin J, et al. Advance directives for truth disclosure. Chest. 2005;128:1037-1039.

13. The Doctor Will See You Now. Milkes, D. “Tube feeding” — Right or wrong: the medical, legal and ethical issues. Available at: http://www.thedoctorwillseeyounow.com/articles/seniorliving/peg. Accessed November 27, 2005.

14. McCann R. Lack of evidence about tube feeding: Food for thought. JAMA. 1999;282(14):1380-1381.

15. Finucaine T, Christmas C, Travis K. Tube feeding in patients with advanced dementia. JAMA. 1999;282:1365-1381.

16. Li I. Feeding tubes in patients with severe dementia. Am Fam Physician. 2002;65(8):1605-1610.

17. Brown University. Summary for policy makers. Available at: http://www.chcr.brown.edu/dying/policyfeedtube.htm

18. Gillick M. Rethinking the role of tube feeding in patients with advanced dementia. New Engl J Med. 2000;342(8):206-210.

19. Turner S. Financial factors play part in nursing homes use of feeding tubes. George Street Journal [serial online]. July 11, 2003.

20. Tunzi M. Ethical theories and clinical practice. Arch Fam Med. 1999;8:342-344.

21. Randolph AG, Zollo MB, Egger MJ, et al. Variability in physician opinion on limiting pediatric life support. Pediatrics. 1999;103(4):e46.

22. End of Life/Palliative Education Resource Center. Warm E. Weissman D. Prognostication. Available at: http://www.eperc.mcw.edu. Accessed December 6, 2005.

23. Rosner F. Death by withdrawal of nutrition and hydration. Einstein J Biol Med. 2004;20:81-84.

24. Catholic Health World [serial online]. November 2005:21(19). Available from The Catholic Health Association of the United States. Accessed December 4, 2005.

25. Tammeus B. Pope’s stance puts pressure on hospitals. Kansas City Star. April 3, 2004:A1.

26. O’Rourke K. The Catholic tradition on forgoing life support. Nat Catholic Bioethics Quarterly. 2005;5:537-553.

27. Graham J. Loyola ethicist finds himself at center of Catholic debate on end-of-life treatment. Chicago Tribune. April 24, 2005:1.

28. International Association for Hospice and Palliative Care. Comments on the EAPC ethics task force’s statement on euthanasia and PAS. Available at: http://www.hospicecare.com. Accessed December 3, 2005.

29. Ellershaw JE, Sutcliffe JM, Saunders CM. Dehydration and the dying patient. J Pain Symptom Manage. 1995;10(3):192-197.

30. Burge F, Byock I, Daniels D, et al. Artificial hydration and nutrition in the terminally ill: A review. Academy of Hospice Physicians. Approved July 11, 1995.

31. Ersek M. Artificial nutrition and hydration: Clinical issues. J Hospice Palliative Care Nurs. 2003;5(4):221-230.

32. Byock I. Patient refusal of nutrition and hydration: Walking the ever-finer line. Am J Hospice Palliat Care. 1995;12(2):8-13.

33. Dalal S, Bruera E. Dehydration in cancer patients: To treat or not to treat. Supportive Oncol. 2004;2:467-487.

34. Bruera E, Portenoy R, Eds. Topics in Palliative Care. New York: Oxford University Press; 1998.

35. Morita T, Hyodo I, Yoshimi T, et al. Association between hydration volume and symptoms in terminally ill cancer patients with abdominal malignancies. Ann Oncol. 2005;16(4):640-647.

36. Barclay L. Voluntary dehydration to hasten death: A newsmaker interview with Linda Ganzini, MD, MPH. Medscape [serial online]. July 22, 2003.

37. Bernat JL, Gert B, Mogielnicki RP. Patient refusal of hydration and nutrition an alternative to physician-assisted suicide or voluntary active euthanasia. Arch Intern Med. 1993;153(24):2723-2728.

38. Sullivan RJ Jr. Accepting death without artificial nutrition or hydration. J Gen Intern Med. 1993;8(4):220-224.

39. 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.

40. Quill TE, Byock IR. Responding to intractable terminal suffering: the role of terminal sedation and voluntary refusal of food and fluids. Ann Intern Med. 2000;132(5):408-414.