HPNA Position Statement Artificial Nutrition and Hydration in End-of-Life Care

Transcription

1 HPNA Position Statement Artificial Nutrition and Hydration in End-of-Life Care Background Patients with life-limiting, progressive illness often experience a decline in appetite, loss of interest in eating and drinking, and weight loss. Some patients may experience dysphagia, which also decreases oral intake. At some point in the illness trajectory, most patients will either be unable to take food and fluids by mouth or will refuse food, including their favorite foods. 1, 2 These changes can cause distress, especially for families and other caregivers, and raise questions about artificial nutrition and hydration (ANH). 2 The decision to implement ANH should consider probable benefits and burdens of the therapy. Artificial nutrition and hydration has traditionally been used to meet several therapeutic goals: 1) prolong life; 2) prevent aspiration pneumonia; 3) maintain independence and physical function; and 4) decrease suffering and discomfort at the end of life. 3 There are few well-designed studies, however, that have examined whether or not ANH is effective in meeting these goals. The empirical evidence that has been published indicates that ANH often does not affect these clinical objectives. For example, studies show that tube feeding does not appear to prolong life in most patients with life-limiting, progressive diseases; moreover, complications from tube placement may increase mortality. 4-6 Furthermore, artificially-delivered nutrition does not protect against aspiration and in some patient populations may actually increase the risk of aspiration and its complications. 3, 4, 7-9 Finally, research has shown that artificial nutrition and nutritional supplements do not enhance frail elders strength and physical 4, 10, 11 function. One of the most important aims of hospice and palliative care is to minimize suffering and discomfort. Many patients, families, and other caregivers fear that undernourished patients may experience hunger. They may also believe that dehydration results in troublesome symptoms such as thirst, dry mouth, headache, delirium, nausea, vomiting, and abdominal cramps. 12 Contrary to expectations, however, studies show that most actively dying patients do not experience hunger even if they have inadequate caloric intake. 13 Many patients may experience thirst, but this symptom is not associated with fluid status; therefore, parenteral fluids are unlikely to alleviate thirst. 12 Headache, nausea and vomiting and abdominal cramps are not associated with dehydration in 1

2 terminally-ill patients. 14 Dry mouth is common, but is not improved by tube feeding or intravenous hydration; conscientious mouth care and small amounts of fluid and ice chips effectively relieve dry mouth In addition to lack of evidence for the beneficial effects of ANH on patient comfort, the possible complications of therapy discourage its use in most patients at the end of life. Parenteral fluids and total parenteral nutrition can cause considerable discomfort with repeated venipunctures and iatrogenic infections. Fluid therapy has also been reported to worsen edema and increase respiratory tract secretions, although these outcomes are not strongly supported by research. 14 Tube feedings are associated with increased infection, fluid overload and skin excoriation around the tube. 4 Since many tube fed patients are not offered food, even if they are able to eat, they may be deprived of human contact and the pleasure of eating. 15, 16 Other discomforts associated with tube feedings include exacerbation of nausea, vomiting, and diarrhea, as well as throat and nose pain from nasogastric tubes. Finally, therapies such as ANH that require the use of tubes increase the likelihood that patients will be restrained Physical restraints are distressing and often increase patient agitation. 19 In addition to the evaluation of the clinical benefits and burdens of ANH, decisionmaking regarding the use of ANH must occur in the context of an open discussion and incorporate the patient s values and goals for care. When patients are incapable of understanding their prognosis and treatment choices or are unable to express their wishes, advance directives and surrogate decision makers must be consulted. The right of competent adults to decide whether or not to accept or refuse specific medical therapies is now well established through legal precedent. Artificial nutrition and hydration is considered medical treatment and thus can be requested or refused. 1, 20 This right reflects respect for patient autonomy. 21 Competent adults may express their decision about ANH and other therapies through advance directives, which should guide care planning at the end of life if the person is no longer able to make decisions or express his or her wishes. The right of parents to forego or withdraw ANH for children who are unlikely to benefit from the therapy also needs to be honored. 22 Providing food and fluids is a fundamental caregiving activity. When caregivers witness gradual decline in the ability to take food and fluids, they may feel compelled to ensure that adequate nutrition and fluid are provided. They may fear that the patient will suffer as she or he starves to death or dies of dehydration. 2, 16, 23 Therefore, families and other caregivers need to be presented with accurate information about the burdens and benefits of ANH. The provision of nutrition is also a significant opportunity for social interaction between caregiver and patient. Artificial nutrition and hydration denies caregivers this opportunity. Artificial nutrition and hydration may be used inappropriately in patients with conditions such as dysphagia that hinder oral intake. Many of these patients can continue to eat and drink, provided that adaptive feeding and 2

3 hygiene techniques are utilized. 15, 24 Speech therapists can be particularly helpful in identifying risk factors for complications of oral and tube feeding. They also can teach staff and family caregivers safe feeding techniques. When feeding activities are no longer possible or reasonable, families and other caregivers should be educated and supported in other ways to provide comfort and social interaction. It is important that they understand that decreased oral intake is a natural, nonpainful part of the dying process. Despite the evidence that ANH should not be routinely used for patients at the end of life, one should not categorically rule out its use in all patients. For example, some patients may benefit from fluid therapy, such as patients with opioid toxicity and delirium associated with dehydration. 25, 26 Traditionally, hospice providers have been reluctant to provide ANH to patients and at times, this reluctance has translated into policies that deny ANH to all hospice patients. In contrast, acute care settings routinely provide aggressive fluid replacement and at times invasive nutritional therapies without regard to the lack of positive outcomes associated with the therapy. 25, 26 Given the wide spectrum of patients now treated by hospice and palliative care teams, some experts suggest that a middle road between universal treatment and universal nontreatment fosters the most effective decision-making around ANH. 26, 27 For example, policies and practices might discourage the use of ANH in situations where ANH is unlikely to benefit patients but allow a trial of ANH in situations where patients might benefit (eg, using fluid therapy for delirium associated with dehydration). In addition to medical indications for ANH, nurses should recognize specific religious and cultural groups for whom withholding or withdrawing ANH are considered immoral. Although members of these groups should not be stereotyped and assumptions about religious and cultural beliefs should be avoided, sociocultural and spiritual considerations need to be incorporated into 28, 29 decisions about initiating and withdrawing ANH. Position Statement The Hospice and Palliative Nurses Association (HPNA) is committed to compassionate care of persons at the end of life. The HPNA believes that the decision to initiate, withhold, or withdraw ANH should be made by the patient and family with accurate and nonjudgmental input from the healthcare team. Ideally, this decision is also documented in an advance directive and clearly communicated to the surrogate decision maker and healthcare team. It is the position of the HPNA Board of Directors to: Promote the education of healthcare providers to ensure that they understand the clinical, legal, and ethical issues regarding the use of ANH. Support education of patient, family and other caregivers about the dying process and its effects on nutrition and fluid status. Caregivers should be taught to enhance the patient s comfort by providing frequent oral and skin care, effective and timely symptom management, and 3

4 psycho-spiritual support. Support caregivers in coping with feelings of helplessness, loss, and fear. Recognize that in specific situations, ANH may be clinically beneficial. ANH may also be initiated or continued to honor the beliefs and values of some cultural and religious groups. Encourage nurses to collaborate with speech therapists, nutritionists, and other healthcare providers to identify and implement strategies that enable caregivers to provide oral nutrition and fluids safely and effectively, as an alternative to ANH. Promote the use of a decision-making process that examines the benefits and burdens of ANH and includes the patient s clinical condition, goals, and values. Acknowledge and support the established, legal and moral right of competent patients to refuse unwanted treatment, including ANH. Acknowledge and support the family's or other surrogate s role as decisionmaker in cases where a patient is unable to make his or her wishes known or is unable to evaluate the benefits and burdens of artificial nutrition or hydration. Promote the use of advance directives such as living wills or the legal assignment of durable power of attorney for health care to document choices and values that should guide care at the end of life in the event that decisionmaking capacity is lost. Promote early discussions about the goals of care and treatment choices, including the expected benefits and burdens of possible end-of-life interventions including ANH, prior to treatment initiation, refusal, or withdrawal. Encourage policies that guide a decision making process for resolving disagreements about care among patients, families, surrogates, and healthcare team members. Support research on the outcomes of ANH in diverse groups of hospice and palliative care patients. Definition of Terms Advance Directives: documents that provide written instructions regarding healthcare choices when a person is no longer able to make or to communicate decisions. Two major types of advance directives are the: 1) living will, which gives instructions regarding specific medical procedures and therapies that should be provided or foregone in specific circumstances (eg, in terminal illness, dementia, persistent vegetative state); and 2) durable power of attorney for health care (DPOA-HC), in which one person assigns another person the authority to make healthcare decisions on his/her behalf in the event that he or she becomes incompetent. 21 Advance directives provide a means by which autonomy is respected when the person is no longer competent. Laws regulating advance directives differ from state to state. 4

5 Artificial Hydration: administration of fluid through non-oral means; routes include intravenous or subcutaneous (also called hypodermoclysis), rectal (proctoclysis), and enteral. 30 Artificial Nutrition: non-oral, mechanical feeding either by the intravenous or enteral route. Enteral feedings may be provided through either nasogastric tubes, or gastrostomy, esophagostomy, or jejunostomy tubes that are placed either endoscopically or in open surgical procedures. Intravenous nutrition is administered through a central line and often is called total parenteral nutrition 15, 30 (TPN). Autonomy: (From the Greek, autos self ; nomos rule government ) a bioethical principle that is concerned with the ability and right of individuals to make decisions for themselves. 21 Autonomous decision makers are persons who can act: 1) intentionally; 2) with freedom from controlling influences and coercion; and 3) based on an understanding of the situation and choices. 21 Autonomy directs nurses and other healthcare providers to respect the choices of competent individuals regarding procedures and therapies. 31 Competency: ability to perform a task; 21 in the context of end-of-life decision making, the term refers to the ability of patients to understand the diagnosis, prognosis and treatment choices, to make a reasoned judgment about different treatments, and to communicate their preferences for care. Competence often is differentiated from capacity in that the former indicates a legal judgment, decided in court, and the latter refers to a clinical judgment made by health professionals. In practice, however, there often is little practical difference between competence and capacity. 21 Surrogate decision maker: a person authorized to make decisions on behalf of an incapacitated person; the authority is established through a legal document such as durable power of attorney for healthcare (DPOA-HC), a court proceeding, or as authorized by state laws. 21 References 1. Position statement on foregoing nutrition and fluid. American Nurses Association. Available at: Accessed February 4, Twycross R, Lichter I. The terminal phase. In: Doyle D, Hanks G, MacDonald N, eds. Oxford textbook of palliative medicine. 2nd ed. New York: Oxford University Press; 1998: Hallenbeck J. Fast facts and concepts #10: Tube feed or not tube feed? J Palliat Med. 2002;5(6): Finucane TE, Christmas C, Travis K. Tube feeding in patients with advanced dementia: a review of the evidence. JAMA. 1999;282(14):

6 5. Mitchell SL, Kiely DK, Lipsitz LA. Does artificial enteral nutrition prolong the survival of institutionalized elders with chewing and swallowing problems? J Gerontol A Biolog Sci Med Sci. 1998;53(3):M Rabeneck L, McCullough LB, Wray NP. Ethically justified, clinically comprehensive guidelines for percutaneous endoscopic gastrostomy tube placement. Lancet. 1997;349(9050): Cogen R, Weinryb J, Pomerantz C, Fenstemacher P. Complications of jejunostomy tube feeding in nursing facility patients. Amer J Gastroenterol. 1991;86(11): Finucane TE, Bynum JP. Use of tube feeding to prevent aspiration pneumonia. Lancet. 1996;348(9039): Kadakia SC, Sullivan HO, Starnes E. Percutaneous endoscopic gastrostomy or jejunostomy and the incidence of aspiration in 79 patients. Amer J Surg. 1992;164(2): Fiatarone M, O'Neill E, Ryan N, et al. Exercise training and nutritional supplementation for physical frailty in very elderly people. N Engl J Med. 1994;330(25): Kaw M, Sekas G. Long-term follow-up of consequences of percutaneous endoscopic gastrostomy (PEG) tubes in nursing home patients. Digest Dis Sci. 1994;39(4): Ellershaw JE. Dehydration and the dying patient. J Pain Sympt Manage. 1995;10(3): McCann RM, Hall WJ, Groth-Juncker A. Comfort care for terminally ill patients. The appropriate use of nutrition and hydration. JAMA. 1994;272(16): Billings JA. Comfort measures for the terminally ill. Is dehydration painful? J Amer Geriatr Soc. 1985;33(11): Dahlin C, Goldsmith T. Dysphagia, dry mouth, and hiccups. In: Ferrell B, Coyle N, eds. Textbook of Palliative Nursing. New York: Oxford University Press; 2001: Gillick MR. Rethinking the role of tube feeding in patients with advanced dementia. New Engl J Med. 2000;342(3): Quill TE. Utilization of nasogastric feeding tubes in a group of chronically ill, elderly patients in a community hospital. Arch Intern Med. 1989;149(9): Sullivan-Marx EM, Strumpf NE, Evans LK, Baumgarten M, Maislin G. Predictors of continued physical restraint use in nursing home residents following restraint reduction efforts. J Amer Geriatr Soc. 1999;47(3): Evans LK, Strumpf NE. Tying down the elderly. A review of the literature on physical restraint. J Amer Geriatr Soc. 1989;37(1): Gostin LO. Deciding life and death in the courtroom. From Quinlan to Cruzan, Glucksberg, and Vacco--a brief history and analysis of constitutional protection of the 'right to die'. JAMA. 1997;278(18): Beauchamp T, Childress J. Principles of biomedical ethics. 5th ed. New York: Oxford University Press; Nelson LJ, Rushton CH, Cranford RE, Nelson RM, Glover JJ, Truog RD. Forgoing medically provided nutrition and hydration in pediatric patients. J Law Med Ethics. 1995;23(1):

7 23. Callahan CM, Haag KM, Buchanan NN, Nisi R. Decision-making for percutaneous endoscopic gastrostomy among older adults in a community setting. J Amer Geriatr Soc. 1999;47(9): Langmore SE, Terpenning MS, Schork A, et al. Predictors of aspiration pneumonia: how important is dysphagia? Dysphagia. 1998;13(2): Fainsinger RL, Bruera E. When to treat dehydration in a terminally ill patient? Support Care Cancer. 1997;5(3): Choi YS, Billings JA. Changing perspectives on palliative care. Oncology (Huntingt). 2002;16(4): Bruera E. The Choi and Billings article reviewed. Oncology (Huntingt). 2002;19(4): Schostak RZ. Jewish ethical guidelines for resuscitation and artificial nutrition and hydration of the dying elderly. J Med Ethics. 1994;20(2): Hamel R, DuBose ER. Views of the major faith traditions. In: Hamel R, ed. Choosing death: Active euthanasia, religion, and the public debate. Deerfield, IL: Trinity Press International; 1991: Kedziera P. Hydration, thirst, and nutrition. In: Ferrell B, Coyle N, eds. Textbook of palliative nursing. New York: Oxford University Press; 2001: Daly BJ. Special challenges of withholding artificial nutrition and hydration. J Gerontol Nurs. 2000;26(9): Developed by: Barbara Wagner, MS, BSN, CHPN Mary Ersek, PhD, RN Sue Riddell, MS, RN, NHA A note of appreciation to Judith Schwarz, PhD, RN for helpful comments on an earlier draft of this statement. Approved by the HPNA Board of Directors June 2003 To obtain copies of HPNA Position Statements, contact the National Office at Penn Center West One, Suite 229, Pittsburgh, PA Phone (412) Fax (412) Website 7