January 2013 Issue
Ethical Decision Making — The Dietitian’s Role in End-of-Life Healthcare When Considering Enteral and Parenteral Nutrition
By Denise Baird Schwartz, MS, RD, FADA, CNSC
Vol. 15 No. 1 P. 28
An 85-year-old man was admitted to an acute care facility after suffering a stroke. Despite his advanced age and history of progressive dementia, his family never prepared documents that addressed advance care planning, which would have designated a surrogate decision maker and indicated his wishes for his end-of-life healthcare.
Before his hospitalization, the patient was living with the youngest of his three adult children, the only daughter. A swallow evaluation by a speech pathologist indicated severe dysphagia. The speech pathologist recommended discontinuing oral feedings and starting the patient on tube feeding.
The physician requested that an RD perform a nutrition consultation to initiate a nasogastric tube feeding and progress the feeding to meet the patient’s nutrient needs. After the RD reviewed the patient’s medical record and consulted with the RN, the dietitian discussed plans for the tube feeding with the patient’s daughter at her father’s bedside. The RD verbally presented information about the tube feeding and provided written information to ensure health literacy, asking the daughter to reiterate and demonstrate what was discussed—a communication technique called the teach-back method.
During this exchange, the daughter indicated that her father never wanted a feeding tube or other medical therapies that would prevent him from enjoying simple daily activities. The daughter said her brothers wanted their father to receive nutrition through tubes and all other medical therapies needed to prolong his life. They were adamant that “everything be done” to extend their father’s life, from a feeding tube to a ventilator to cardiopulmonary resuscitation. This potential conflict between siblings is all too common when dealing with end-of-life healthcare decisions, commonly known as ethical dilemmas.
This article will discuss this common occurrence, the importance of discussing end-of-life healthcare issues with patients and family members while honoring patients’ wishes, strategies to prevent conflict, and the RD’s role in ethical decision making in the context of enteral and parenteral nutrition.
Ethical Dilemma Issues and Stakeholders
The above case study is an example of inadequate family communication without written documentation about end-of-life healthcare wishes. Without documents for advance care planning in a patient’s healthcare record, the clinical ethical dilemma—a difficult problem involving moral conflicts for which there seems to be no satisfactory solution—is now set in motion. This can result in the patient receiving medical treatments that go against his or her wishes and family members making decisions without the individual’s input.
Yet the goal of any healthcare team is to provide appropriate and effective patient-centered care based on the individual’s wishes. From the team members’ perspective, they should deliver medically appropriate treatment using evidence-based medicine and assess the benefits and risks/burdens involved. And they should adhere to their institution’s policies and procedures for ethical decision making regarding artificial nutrition.1 Such care is difficult to provide in the case presented due to the clinical ethical dilemma of family members in conflict with the patient’s wishes.
The ways in which people deal with issues of serious illness often are shaped by their faith and culture. Individuals with different faiths and cultures have diverse perspectives on the use of life-sustaining therapies, the communication process for delivering health information directly to the patient vs. through the family, and the family’s role in the decision-making process for healthcare at the end of one’s life.2
The dietitian’s understanding of cultural and religious diversity is necessary to best meet the needs of a heterogeneous patient population. Diversity awareness gives the RD the ability to tailor information to patients, families, and significant others, and promote understanding of decision making when dealing with the use of artificial nutrition. And awareness of different cultures and faiths furthers an RD’s understanding of diversity in clinical ethics, which promotes making right choices and decisions in healthcare delivery.
Although the patient is the predominate stakeholder in this process, the concerns of the family, physician, dietitian, and other healthcare providers are what comprise the process of providing the most appropriate nutrition therapy intervention. The patient’s best interests always should be at the center of healthcare decisions. Patient-centered care is defined as care that’s respectful of the individual person and responsive to his or her preferences, needs, and values and that ensures patient values guide all decisions.3 The focus of healthcare should be shifted away from managing just the disease and back to patients and their families, the major stakeholders in the process.4
Health Literacy and the Teach-Back Method
The use of evidence-based practice guidelines, such as those from the Academy of Nutrition and Dietetics (the Academy), is beneficial in providing appropriate patient education information.5 As indicated in the education process with the daughter in the aforementioned case study, the RD was concerned about presenting the information in simple terms due to the issue of health literacy. Health literacy is defined as the degree to which individuals obtain, process, and understand basic health information and services to make appropriate healthcare decisions.6 It involves a range of social, cultural, and individual factors, such as age, education, and race.
Due to concerns for improving health literacy, the RD used the teach-back technique with the daughter while educating her about tube feeding. This is an effective method to ensure individuals understand what they’ve been told. The process involves asking the individual to explain or demonstrate what he or she was taught. If the person doesn’t explain correctly what he or she learned, the assumption is that the information wasn’t presented effectively. If this is the case, the RD would explain the information again but use an alternative approach.7
In addition to verbal communication, understanding the printed information is a significant factor that affects the impact of the message. The printed educational material the dietitian gave the daughter was written in accordance with the teach-back method. A fifth-grade reading level or lower is recommended for informational material and has been identified as a criterion for low literacy.5
Awareness of health literacy concerns and the use of the teach-back method are aspects of patient-centered care RDs can use to improve communication with patients and their families. Moreover, RDs should be aware of comparative clinical effectiveness research, which determines what treatment works best, for whom, and under what circumstances, to enhance the decision maker’s ability to fully understand and weigh the alternative healthcare options available.8
Preventive Ethics and the RD’s Role
Another important aspect of end-of-life care for dietitians is the practice of preventive ethics. Preventive ethics suggest that ethical conflict between family members is largely predictable, but it can be avoided through interventions aimed at the organization, the patient care unit, and the individuals involved. The goals of preventive ethics are to identify common triggers of ethical conflict, such as unrealistic expectations that treatment will be effective, and address them before they contribute to conflict. Preventive ethics would have provided options for the RD and other healthcare clinicians involving the 85-year-old father and his children to implement a proactive process to reduce the potential conflict among them. Preventive ethics represents a dramatic shift from the traditional ethics approach, which involves reacting to ethically challenging patient situations on a case-by-case basis.9
RDs maintain a unique role in the hospital setting. They’re in a position to develop nutrition screening parameters for all patients and implement the nutrition care process. This process may call for initiating enteral or parenteral nutrition. But what if this therapy isn’t congruent with the patient’s wishes based on his or her quality-of-life goals? To avoid such dilemmas, RDs can screen for quality-of-life goals before initiating the nutrition care process. They can review the medical record for an advance directive—written documentation of treatment preferences and the designation of a surrogate decision maker—and discuss their findings with other healthcare team members.1
Dietitians are in the best position to improve ethical decision making for enteral and parenteral nutrition because they can facilitate an interprofessional, collegial approach to whole patient-centered care while delivering nutrition therapies. This approach involves two or more medical professionals working together as a team with a common purpose and commitment, and with mutual respect. The process involves the RD being aware of the role of nutrition as it relates to the physical, emotional, and spiritual needs of the patient, when applicable, and relaying this information to the other healthcare team members.
The word “nutrition” connotes a sense of vibrancy and life. The hope is that nutrition, for some patients, will open the door that leads to advance care planning and end-of-life discussions in the hospital setting. Dietitians already have formed bridges between themselves and other medical fields, for example, through discussions with physicians about optimal placement of small-bowel feeding tubes beyond the ligament of Treitz under specific conditions, and with respiratory therapists about the impact of nutrition substrates on blood gases and pulmonary function. And RDs can learn to incorporate ethics in the decision-making process by integrating clinical ethics into their dietetic practices. They can become knowledgeable about advance care planning terms and learn how to promote conversations about nutrition with patients and their families, which can lead to a transformation in nutrition support practice.
Collaboration with the physician, nurse, social worker, chaplain, palliative care team, and other healthcare team members is optimal to facilitate this process. Dietitians who learn more about advance directives, living wills, durable power of attorney for healthcare (a legal document in which a competent person gives another person the power to make healthcare decisions for him or her if unable to make those decisions personally), and physician orders for life-sustaining treatment have an advantage in understanding documents in the patient’s medical record.
Cue-Based Patient/Family Discussion
One way to promote conversations about nutrition therapy with families is to learn about cue-based patient/family discussion. This involves listening for specific key words or trigger phrases from a patient or family member expressing he or she doesn’t want a particular therapy, such as a feeding tube. RDs can use this response to begin cue-based discussions about quality-of-life goals while educating patients and family members about nutrition therapies.
To begin, dietitians can tell family members the goal is to provide enteral or parenteral nutrition support based on the patient’s wishes. The sidebar below presents examples of these triggers for cue-based discussion that can lead a patient or family to understand that the focus should be on the patient’s wishes.
This process is especially useful when the patient is on a ventilator or unable to communicate. The important concept is that family members or surrogate decision makers must understand that their role is to represent the patient’s wishes and not their own. Based on the cues given by the patient or family, dietitians can refer further discussions to the physician, nurse, social worker, or chaplain. Documenting these referrals in the medical record is essential. The verbal and written interprofessional communication is important to facilitate a consistent healthcare team approach. The primary care physician is the coordinator of the clinical ethics process with the patient, family, and healthcare team. RDs and other healthcare professionals help contribute to the clinical ethics process regarding artificial nutrition.
Action Steps for Process Improvement
Both the American Society for Parenteral and Enteral Nutrition (ASPEN) and the Academy provide resources for healthcare professionals on ethical considerations regarding nutrition therapies, including recommendations and guidelines.10,11 The first step for healthcare institutions is to incorporate these recommendations when developing ethical decision making for artificial nutrition policy and procedure. Recommendations and guidelines from other societies and organizations are important to include in these documents based on the patient population characteristics and religious affiliation of the healthcare facility. It’s important to develop the policy and procedure in collaboration with all healthcare professionals involved in the process to encourage acceptance of the final document. A sample policy and procedure for dealing with ethical decision making for artificial nutrition has been published in The ASPEN Adult Nutrition Support Core Curriculum.12
The second step for healthcare institutions involves implementing the policies and procedures needed to improve communication among patients, families, and healthcare providers regarding clinical ethics and nutrition therapies. To sustain improvements in practice, the facility needs to standardize a proactive, integrated, systematic process that focuses on patient-centered care and communication.
The third step involves designing an improvement project dealing with clinical ethics and artificial nutrition with measurable goals, along with developing a plan to remeasure the data. An example of measurable goals can include the number of patients receiving nutrition support that have an advance directive in their chart, the number of patients with family care conferences, or the reduction in the number of bioethics consults, which involve mediation to obtain a consensus among individuals in conflict concerning artificial nutrition issues. Even incorporating an analysis involving patient satisfaction can facilitate process improvements.1,13
The final step involves presenting information about best practices with other facilities at national meetings and publishing data. Accomplishing this step would help dietitians in private practice improve patient-centered care by standardizing the incorporation of clinical ethics in the field of nutrition support.1,13
Engaging the Public in End-of-Life Conversations
To engage the public in end-of-life healthcare conversations, healthcare professionals must educate themselves about the process and become aware of resources and tools available (see sidebar below).
End-of-life conversations don’t involve just the elderly and their adult children; they affect everyone in some capacity. In the hospital setting, patient-centered care is best achieved when all healthcare professionals communicate and are engaged in the conversation to provide a consistent healthcare team approach.14
Perhaps if RDs and other healthcare team members embrace these conversations in their professional and personal lives, the public will become more engaged in end-of-life healthcare discussions. Recognizing the importance of communication in families and acting on these discussions is the best way to prevent clinical ethics dilemmas and provide whole patient-centered care in the hospital. In the future, the goal will be for everyone to have advance care planning discussions with their family and written documentation before an illness develops and hospitalization follows. Dietitians are essential healthcare team members involved in clinical ethics due to their role in the optimal use of enteral and parenteral nutrition—and they can make a difference.
— Denise Baird Schwartz, MS, RD, FADA, CNSC, is the nutrition support coordinator at Providence Saint Joseph Medical Center in Burbank, California, and has been recognized both nationally and internationally as a speaker on nutrition support topics for the critically ill.
Triggers for Cue-Based Patient/Family Discussion
• Patient/family are healthcare team members.
• Patient-/person-centered healthcare is based on patient wishes.
• The family expresses what the patient would want.
• Family/surrogate decision maker’s role is to represent the patient’s wishes, not their own.
Resources and Tools
• National Healthcare Decisions Day (www.nhdd.org): Held annually on April 16, the goal of this day is to inspire, educate, and empower the public and healthcare providers regarding the importance of advance care planning. Resources for activities to promote this day are available on the website.
• Speak Up Campaign (www.advancecareplanning.ca): This campaign is designed to promote advance care planning in Canada. It was developed to raise awareness of the importance of advance care planning and end-of-life care. The website provides a kit with material to promote advance care planning.
• Aging With Dignity’s Five Wishes (www.agingwithdignity.org/five-wishes.php): This guide helps start important conversations about end-of-life care. It provides a documentation tool for detailing an individual’s wishes.
• Physician Orders for Life-Sustaining Treatment (www.polst.org): This is based on effective communication of patient wishes. It involves documenting medical orders on a brightly colored form and includes a paradigm program to improve the quality of care people receive at the end of life.
• The Conversation Project (www.theconversationproject.org): The goal of this project is to have every person’s end-of-life preferences expressed and respected. It includes a starter kit to help initiate conversations with loved ones regarding end-of-life care wishes.
• Breathe — a True Story of Letting Go of My Parents Gracefully, For I Will See Them Again (www.breathe-annebland.com): This book is a healthcare professional’s personal story intended to help others begin the dialogue with family members about end-of-life care decisions. Personal stories such as this one are intended to help individuals deal with family relationships, faith, and values and are designed for both healthcare professionals and the public.
1. Schwartz DB. Ethical considerations in the critically ill patient. In: Cresci G, ed. Nutritional Therapy for the Critically Ill Patient: A Guide to Practice. 2nd ed. Boca Raton, FL: Taylor & Francis; 2013 (in press).
2. Preedy VR, ed. Diet and Nutrition in Palliative Care. Boca Raton, FL: CRC Press; 2011.
3. Barry MJ, Edgman-Levitan S. Shared decision making ─ the pinnacle of patient-centered care. N Engl J Med. 2012;366(9):780-781.
4. Reuben DB, Tinetti ME. Goal-oriented patient care ─ an alternative health outcomes paradigm. N Engl J Med. 2012;366(9):777-779.
5. Gallagher-Allred CR. Communication and education for families dealing with end-of-life decisions. J Acad Nutr Diet. 2012;112(2):309-310.
6. Carbone ET, Zoellner JM. Nutrition and health literacy: a systematic review to inform nutrition research and practice. J Acad Nutr Diet. 2012;112(2):254-265.
7. Weiss BD. Health Literacy and Patient Safety: Help Patients Understand. 2nd ed. Chicago, IL: American Medical Association Foundation; 2007.
8. Gabriel SE, Normand SL. Getting the methods right ─ the foundation of patient-centered outcomes research. N Engl J Med. 2012;367(9):787-790.
9. Epstein EG. Preventive ethics in the intensive care unit. Am Assoc Crit Care Nurs. 2012;23(12):217-224.
10. Barrocas A, Geppert C, Durfee SM, et al. A.S.P.E.N. ethics position paper. Nutr Clinc Prac. 2010;25(6):672-679.
11. O’Sullivan Maillet J. Position of the American Dietetic Association: ethical and legal issues in nutrition, hydration, and feeding. J Am Diet Assoc. 2008;108(5):873-882.
12. Geppert CMA, Barrocas A, Schwartz DB. Ethics and law. In: Mueller C, McClave SA, Schwartz DB, Kovacevich D, Miller SJ, eds. The A.S.P.E.N. Adult Nutrition Support Core Curriculum. 2nd ed. Springfield, MD: American Society for Parenteral and Enteral Nutrition; 2012: 656-676.
13. Schwartz DB. Three steps for improving end-of-life nutrition care. Clinical Nutrition Insight. 2012;38(10):4-5.
14. Schwartz DB. Clinical ethics and nutrition support. J Nutr Therapeutics. 2012;1(1):86-90.