Aug 6, 2014 - Home parenteral nutrition (HPN) is a life-sustaining therapy ..... the âFive Wishes Form,â Physician Orders for Life-Sustaining Treatment, durable ...
Journal of Parenteral and Enteral Nutrition http://pen.sagepub.com/
The Prevalence and Contents of Advance Directives in Patients Receiving Home Parenteral Nutrition Gloria T. Bui, Jithinraj Edakkanambeth Varayil, Ryan T. Hurt, Kari A. Neutzling, Katlyn E. Cook, Debra L. Head, Paul S. Mueller and Keith M. Swetz JPEN J Parenter Enteral Nutr published online 5 August 2014 DOI: 10.1177/0148607114544323 The online version of this article can be found at: http://pen.sagepub.com/content/early/2014/08/03/0148607114544323
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research-article2014
PENXXX10.1177/0148607114544323Journal of Parenteral and Enteral NutritionBui et al
Original Communication
The Prevalence and Contents of Advance Directives in Patients Receiving Home Parenteral Nutrition Gloria T. Bui, BA1; Jithinraj Edakkanambeth Varayil, MD2; Ryan T. Hurt, MD, PhD2,3,4; Kari A. Neutzling, BS1; Katlyn E. Cook, BS1,2; Debra L. Head AA, CCRP2; Paul S. Mueller, MD, MPH1,2,5; and Keith M. Swetz, MD, MA2,5
Journal of Parenteral and Enteral Nutrition Volume XX Number X Month 201X 1–6 © 2014 Mayo Foundation for Medical Education and Research DOI: 10.1177/0148607114544323 jpen.sagepub.com hosted at online.sagepub.com
Abstract Background: Ethical issues may arise with patients who receive home parenteral nutrition (HPN) and have a change in their overall health status. We sought to determine the extent of advance care planning and the use of advance directives (ADs) by patients receiving HPN. Materials and Methods: Retrospective review of the medical records of adult patients newly started on HPN at the Mayo Clinic, Rochester, Minnesota, between January 1, 2003, and December 31, 2012, to determine the prevalence and contents of their ADs. Results: A total of 537 patients met the inclusion criteria. Mean (SD) age at commencement of HPN was 52.8 (15.2) years, and 39% (n = 210) were men. Overall, 159 patients (30%) had ADs. Many mentioned specific life-prolonging treatments: cardiopulmonary resuscitation (44 [28%]), mechanical ventilation (43 [27%]), and hemodialysis (19 [12%]). Almost half mentioned pain control (78 [49%]), comfort measures (65 [41%]), and end-of-life management of HPN (76 [48%]). Many also contained general statements about end-of-life care (no “heroic measures”). The proportion specifically addressing end-of-life management of HPN (48%) was much higher than that previously reported in other populations with other life-supporting care such as cardiac devices. The primary diagnosis or the indication for HPN was not correlated with whether or not the patient had an AD (P = .07 and .46, respectively). Conclusion: Although almost one-third of the patients had an AD, less than half specifically mentioned HPN in it, which suggests that such patients should be encouraged to execute an AD that specifically addresses end-of-life management of HPN. (JPEN J Parenter Enteral Nutr. XXXX;xx:xx-xx)
Keywords advance directives; end-of-life care; ethics; parenteral nutrition
Clinical Relevancy Statement Home parenteral nutrition (HPN) is a life-sustaining therapy used in a number of disease states, including short bowel syndrome, enterocutaneous fistula, and motility disorders. Advance directives (ADs) are important documents for allowing patients to articulate their goals, values, and preferences in the setting of chronic diseases. A number of studies have evaluated ADs in other diseases, but none has evaluated the prevalence and contents of ADs in patients receiving HPN. Nutrition providers should discuss ADs with all such patients.
Introduction Parenteral nutrition (PN) is a supportive intervention for patients with gastrointestinal (GI) tract failure. Home PN (HPN) has become more prevalent, given its lower cost and enhancement of patient quality of life compared with inpatient PN.1 For most of these patients, HPN represents a lifesustaining therapy, for without it they would be unable to survive for an appreciable period of time. Since the inception of HPN in the early 1970s, the number of patients receiving it has increased dramatically.2 Currently, HPN has a yearly
prevalence of approximately 120 patients per million in the United States, with 5-year survival in North America and Europe ranging from 60%–79%.3,4 Despite the routine use of HPN, clinicians often find it difficult to effectively recognize patients who will benefit from it. While clinicians can start HPN relatively easily, the decision to do so requires a full assessment of medical need and the determination of a clear end point for its use. For example, should HPN be used in patients with cancer who have an unclear treatment program or an overall poor prognosis? Such patients are often started on HPN despite little or no likelihood of clinical benefit.5 Conversely, in the absence of a progressive illness, HPN is clearly indicated in patients with GI tract failure who are unable to maintain adequate nutrition status with oral or enteral nutrition (EN) alone. The matter of nutrition support can elicit emotional responses from patients, families, and clinicians. Although courts have ruled that withdrawal of nutrition support is permissible if it no longer allows a patient to achieve his or her goals of care,6,7 doing so can lead to strong emotional reactions and potential divisions among the patient and family members.8,9 When the decision-making capacity of the patient is compromised, such conflict can be even more pronounced.
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Journal of Parenteral and Enteral Nutrition XX(X)
The goal of advance care planning is to allow patients to give voice to their preferences for healthcare in the event that their decision-making capacity is lost. Often, an advance directive (AD) can allow the patient to document his or her preferences regarding life-sustaining interventions, including EN or parenteral nutritional (PN) support. Such documentation may be helpful to surrogates who are trying to determine the role of nutrition support for their loved one.7 However, to our knowledge, the prevalence and contents of the ADs of patients receiving HPN in the United States have not been assessed.
appointment of a surrogate decision maker, and comments regarding life-sustaining treatments. This study was approved by the Mayo Clinic Institutional Review Board. In accordance with Minnesota law, we excluded patients who did not authorize use of their medical records for research purposes. Incarcerated patients were excluded. No patients were contacted for the purpose of this study, since this was a retrospective review of medical records only.
Methods
The methods and statistical analysis used in this study were analogous to those in previously reported studies involving patients with cardioverter-defibrillators,11 cardiac pacemakers,12 or ventricular assist devices.13 Continuous variables were summarized using mean (standard deviation [SD]). Categorical variables were summarized using frequency percentage. The data were divided into 2 groups, those with an AD in the electronic health record and those without an AD in the electronic health record. Continuous variables were compared between the 2 groups using a 2-sample t test, and categorical variables were compared between the 2 groups using the Fisher exact test (or the χ2 test when appropriate). Contingency analysis of the presence of AD either by primary diagnosis or indication for HPN was done using the Pearson χ2 test. P values
