522652
research-article2014
NCPXXX10.1177/0884533614522652Nutrition in Clinical PracticeSchwartz and Kottkamp
Clinical Ethics Insights
National Healthcare Decisions Day Denise Baird Schwartz, MS, RD, CNSC, FADA, FAND, FASPEN1; and Nathan A. Kottkamp2
Nutrition in Clinical Practice Volume 29 Number 2 April 2014 252–254 © 2014 American Society for Parenteral and Enteral Nutrition DOI: 10.1177/0884533614522652 ncp.sagepub.com hosted at online.sagepub.com
Keywords ethics; nutritional support; terminal care; advance directives
How Does National Healthcare Decisions Day Benefit the Nutrition Support Clinician? The 7th Annual National Healthcare Decisions Day (NHDD) is scheduled for April 16, 2014. This day was initiated to inspire, educate, and empower the public and providers about the importance of advance care planning.1 NHDD brings focus on the importance of documenting an individual’s wishes for healthcare, including nutrition therapies. The importance of advance care planning in ethical decision making for nutrition support is well documented.2-6 Nutrition support clinicians are involved in identifying the need for enteral nutrition (EN) and parenteral nutrition (PN), ordering therapy, administering formulas and solutions, and evaluating and monitoring nutrition therapy. Yet, without appropriate advance care planning, there is a chance that this therapy may not be desired by the individual and is given against his or her wishes. This is most likely to occur if an advance directive is not available for a patient unable to communicate in the hospital, especially without a surrogate decision maker who knows the patient’s wishes. NHDD exists to reduce the frequency of these unfortunate situations. Despite the widespread availability of advance directive forms and resources, implementation rates are poor, communication with healthcare professionals and documentation of preferences remain inadequate, and deficits in advance care planning continue to occur.7 Resolution of this issue of dealing with life-sustaining medical therapies choices is a multifactorial issue. PN and EN are life-sustaining medical therapies and require a thoughtful decision-making process before the illness and hospitalization, especially when considering these therapies for long-term periods. Also known as artificial nutrition and hydration, these therapies are similar to intubation with subsequent mechanical ventilation in that they are life sustaining. Individuals have the right to decline artificial nutrition during an acute illness or for an extended period. A person’s culture, religion, and values, along with input from family members, may alter his or her view on use of nutrition therapies during an illness and near the end of life. Autonomy is the essential component that must always be considered; yet without an advance directive, the person’s actual wishes may not be known.2,3 Incorporating a screening for quality-of-life goals,
including a review of the individual’s advance directive, is important prior to recommending nutrition support therapies.5
What Is the Role of NHDD and How Can Nutrition Support Clinicians Use This Day to Maximize Promotion of Advance Care Planning Awareness? NHDD encourages advance care planning to be a structured process. While it focuses on providing a single day each year to serve as a catalyst for action, NHDD’s core themes are applicable throughout the year. Significantly, the “Lead by Example” concept has been a core theme with NHDD since its inception. This theme recognizes that all healthcare professionals are potential patients with a need for advance care planning of their own. In fact, substitute decision makers may be needed for roughly 70% of all adults.8 Furthermore, this theme also recognizes that it is difficult to assist others with advance care planning and to advocate for it unless we are engaged in the process ourselves. Moving beyond professionals, NHDD encourages awareness by all adults to recognize the benefits of thinking about and discussing with loved ones what their healthcare choices would be if they were unable to speak for themselves. Advance directives come in two main forms: •• The documentation of a “healthcare power of attorney” (or “proxy” or “agent” or “surrogate”), which names documents the person an individual selects to be his or her voice for healthcare decisions if he or she cannot speak for himself or herself.
From 1Nutrition Support Coordinator, Providence Saint Joseph Medical Center, Burbank, California; and 2Chair, National Healthcare Decisions Day, Richmond, Virginia. Financial disclosure: None declared. This article originally appeared online on February 14, 2014. Corresponding Author: Denise Baird Schwartz, Providence Saint Joseph Medical Center, 501 South Buena Vista, Burbank, CA, 91505, USA. Email: [email protected]
Downloaded from ncp.sagepub.com at NATIONAL UNIV SINGAPORE on June 28, 2015
Schwartz and Kottkamp
253
Table 1. Advance Directive Sources.1 Aging With Dignity (Five Wishes) www.agingwithdignity.org/five-wishes.php This document helps individuals express care options and preferences. The advance directive meets the legal requirements in most states and is available in 20 languages for a nominal fee. Order online or call 850-681-2010. Caring Connections www.caringinfo.org/ This site offers free, state-specific advance directives for all 50 states and the District of Columbia that meet the legal requirements for each state. Download individual copies for free or call 800-658-8898 to have a copy mailed to you. Center for Practical Bioethics www.practicalbioethics.org/ Caring Conversations is a workbook to help individuals and families communicate with each other about their healthcare preferences and contains advance directive documents. These forms are valid in every state when notarized and signed by two witnesses. Download for free or call 800-344-3829 to order. Compassion and Choices www.compassionandchoices.org/ This site offers an advance care planning tool kit and state-specific advance directive materials. Lifecare Advance Directives www.lifecaredirectives.com/ This site offers free state-standard advance directives for all 50 states, the District of Columbia, and 4 major U.S. territories (American Samoa, Guam, Puerto Rico, and the Virgin Islands). Research-validated comprehensive advance directives, as well as completion guides, agent guides, and other important advance directive support documents, are also available. MedicAlert Foundation www.medicalert.org/ This site offers emergency medical information and identification services, including Do Not Resuscitate medical IDs and option to store advance directives for all 50 states. MyDirectives www.mydirectives.com This site offers a free online platform for completing an advance directive, which is then stored in a secure database available to you and your medical providers 24/7 to ensure one clear, well-thought-out document. My Directives also features a Discussion Guide and Conversation Starters to help patients and families have discussions with doctors, other family, and a healthcare agent. Project GRACE www.projectgrace.org/ Guidelines for Resuscitation and Care at End-of-Life offers a free Advance Care Planning Document that is legally valid in states that do not require forms to be notarized. Download for free, or call 877-99-GRACE to order a copy.
Table 2. Resources for Family Conversations.1 The Conversation Project theconversationproject.org/ Dedicated to helping people talk about their wishes for end-of-life care. They are focused on generating conversations about healthcare wishes with family members and ensuring individuals have thought through what they want at the end of life. DeathWise www.deathwise.org/ Passionate about motivating people to talk about, make decisions, plan for the end of their lives, and then document their wishes in an advance directive to ensure their preferences are communicated to their medical services providers, family, and friends. Wise Conversations provides trained coaches to meet with and guide small groups of people through conversations about clarifying choices and the process of completing advance directives. Engage With Grace www.engagewithgrace.org/ Movement with the goal to help people discuss what’s important to them so their end-of-life experience is just as purposeful as the way in which they live their lives. Their movement calls on people to engage in a blog rally every Thanksgiving and also has a call to action to participate in their One Slide project. The One Slide features just 5 questions designed to get the conversation about end-of-life care started with loved ones. The Engage With Grace Blog Rally has a different theme every year at Thanksgiving and is an opportunity for people to donate their Facebook, Twitter, and Blog updates to raise awareness about the importance of end-of-life conversations. PREPARE www.prepareforyourcare.org/ Referred to as PREPARE For Your Care, this interactive website serves as a resource for families navigating medical decision making.
•• A “living will” documents what kinds of medical treatments an individual would or would not want at the end of life. Tools are available from the NHDD website to obtain free advance directive documents and resources for family conversations that would benefit both the healthcare professional
and the individual and their family. These tools are listed in Tables 1 and 2. Although free forms and decision-making tools have been available for years, various studies indicate that no more than one-third of Americans have completed an advance directive.9 One of the likely reasons for these low figures is that advance care planning tends not to be encouraged by and reinforced by
Downloaded from ncp.sagepub.com at NATIONAL UNIV SINGAPORE on June 28, 2015
254
Nutrition in Clinical Practice 29(2)
healthcare providers. Several potential solutions to this are structural, and providers are encouraged to consider the following: •• Look at your processes and patient flow procedures for all patients: 1. Are patients asked about advance directives only by an admissions/registration clerk with little or no knowledge about the topic? 2. Is there any follow-up about advance directives and advance care planning following the registration process? 3. Does your discharge planning process address advance care planning? 4. Do you have advance directives included in your checklist of documentation for transfers? •• Consider your state laws and resources, affecting how easily the public is able to access and use resources: 1. Could you advocate for changing state law requirements that create extra burdens on the creation of advance directives (ie, reduce complicated witness limitations, notary requirements, mandatory forms/language)? 2. Does your state bar association and/or medical society have resources for advance directives and advance care planning? 3. Does your state have an advance directive registry? •• Consider extending your community outreach to include creating opportunities to engage others who may not have had any exposure to advance care planning: 1. Have you focused all your educational efforts merely within your organization/facility? 2. Have you made any effort to reach underserved populations? 3. Have you recruited anyone else to join the NHDD initiative? 4. Have you shared personal stories about this topic?
Conclusion NHDD provides an opportunity for nutrition clinicians to engage in advance care planning and to inspire and educate patients and their family in the use of advance directives as a communication tool. The ultimate goal is to provide medical therapies, including nutrition support, based on the individual’s wishes during a period in his or her life when decision making becomes difficult during an illness and at end of life. If nutrition clinicians “Lead by Example” and work to develop structured ways to address this goal, it is likely that the care delivered to patients and their families will be more compassionate, more patient centered, and more efficient.
References 1. National Healthcare Decisions Day. http://www.nhdd.org/. Accessed November 25, 2013. 2. Barrocas A, Geppert G, Durfee SM, et al; A.S.P.E.N. Board of Directors. A.S.P.E.N. Ethics position paper. Nutr Clin Pract. 2010;25:672-679. 3. Geppert CMA, Barrocas A, Schwartz DB. Ethics and law. In: Mueller C, McClave SA, Schwartz DB, Kovacevich D, and 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. 4. O’Sullivan Maillet J, Schwartz DB, Posthauer ME. Position of the Academy of Nutrition and Dietetics: ethical and legal issues of feeding and hydration. J Acad Nutr Diet. 2013;113;828-833. 5. Schwartz DB, Posthauer ME, O’Sullivan Maillet J. Practice paper of Academy of Nutrition and Dietetics: ethical and legal issues of feeding and hydration. www.eatright.org/positions 6. Schwartz DB. Integrating patient-centered care and clinical ethics into nutrition practice. Nutr Clin Pract. 2013;28:543-555. 7. Heyland DK, Barwich D, Pichora D, et al; ACCEPT (Advance Care Planning Evaluation in Elderly Patients) Study Team; Canadian Researchers at the End of Life Network (CARENET). Failure to engage hospitalized elderly patients and their families in advance care planning. JAMA Intern Med. 2013;173:778-787. 8. Silveira MJ, Kim SYH, Langa KM. Advance directives and outcomes of surrogate decision making before death. N Engl J Med. 2010;362:1211-1218. 9. U.S. Department of Health and Human Services, Assistant Secretary for Planning and Evaluation, Office of Disability, Aging and Long-Term Care Policy. Advance directives and advance care planning: report to Congress. August 2008. http://aspe.hhs.gov/daltcp/reports/2008/ADCongRpt.htm
Downloaded from ncp.sagepub.com at NATIONAL UNIV SINGAPORE on June 28, 2015
research-article2014
NCPXXX10.1177/0884533614522652Nutrition in Clinical PracticeSchwartz and Kottkamp
Clinical Ethics Insights
National Healthcare Decisions Day Denise Baird Schwartz, MS, RD, CNSC, FADA, FAND, FASPEN1; and Nathan A. Kottkamp2
Nutrition in Clinical Practice Volume 29 Number 2 April 2014 252–254 © 2014 American Society for Parenteral and Enteral Nutrition DOI: 10.1177/0884533614522652 ncp.sagepub.com hosted at online.sagepub.com
Keywords ethics; nutritional support; terminal care; advance directives
How Does National Healthcare Decisions Day Benefit the Nutrition Support Clinician? The 7th Annual National Healthcare Decisions Day (NHDD) is scheduled for April 16, 2014. This day was initiated to inspire, educate, and empower the public and providers about the importance of advance care planning.1 NHDD brings focus on the importance of documenting an individual’s wishes for healthcare, including nutrition therapies. The importance of advance care planning in ethical decision making for nutrition support is well documented.2-6 Nutrition support clinicians are involved in identifying the need for enteral nutrition (EN) and parenteral nutrition (PN), ordering therapy, administering formulas and solutions, and evaluating and monitoring nutrition therapy. Yet, without appropriate advance care planning, there is a chance that this therapy may not be desired by the individual and is given against his or her wishes. This is most likely to occur if an advance directive is not available for a patient unable to communicate in the hospital, especially without a surrogate decision maker who knows the patient’s wishes. NHDD exists to reduce the frequency of these unfortunate situations. Despite the widespread availability of advance directive forms and resources, implementation rates are poor, communication with healthcare professionals and documentation of preferences remain inadequate, and deficits in advance care planning continue to occur.7 Resolution of this issue of dealing with life-sustaining medical therapies choices is a multifactorial issue. PN and EN are life-sustaining medical therapies and require a thoughtful decision-making process before the illness and hospitalization, especially when considering these therapies for long-term periods. Also known as artificial nutrition and hydration, these therapies are similar to intubation with subsequent mechanical ventilation in that they are life sustaining. Individuals have the right to decline artificial nutrition during an acute illness or for an extended period. A person’s culture, religion, and values, along with input from family members, may alter his or her view on use of nutrition therapies during an illness and near the end of life. Autonomy is the essential component that must always be considered; yet without an advance directive, the person’s actual wishes may not be known.2,3 Incorporating a screening for quality-of-life goals,
including a review of the individual’s advance directive, is important prior to recommending nutrition support therapies.5
What Is the Role of NHDD and How Can Nutrition Support Clinicians Use This Day to Maximize Promotion of Advance Care Planning Awareness? NHDD encourages advance care planning to be a structured process. While it focuses on providing a single day each year to serve as a catalyst for action, NHDD’s core themes are applicable throughout the year. Significantly, the “Lead by Example” concept has been a core theme with NHDD since its inception. This theme recognizes that all healthcare professionals are potential patients with a need for advance care planning of their own. In fact, substitute decision makers may be needed for roughly 70% of all adults.8 Furthermore, this theme also recognizes that it is difficult to assist others with advance care planning and to advocate for it unless we are engaged in the process ourselves. Moving beyond professionals, NHDD encourages awareness by all adults to recognize the benefits of thinking about and discussing with loved ones what their healthcare choices would be if they were unable to speak for themselves. Advance directives come in two main forms: •• The documentation of a “healthcare power of attorney” (or “proxy” or “agent” or “surrogate”), which names documents the person an individual selects to be his or her voice for healthcare decisions if he or she cannot speak for himself or herself.
From 1Nutrition Support Coordinator, Providence Saint Joseph Medical Center, Burbank, California; and 2Chair, National Healthcare Decisions Day, Richmond, Virginia. Financial disclosure: None declared. This article originally appeared online on February 14, 2014. Corresponding Author: Denise Baird Schwartz, Providence Saint Joseph Medical Center, 501 South Buena Vista, Burbank, CA, 91505, USA. Email: [email protected]
Downloaded from ncp.sagepub.com at NATIONAL UNIV SINGAPORE on June 28, 2015
Schwartz and Kottkamp
253
Table 1. Advance Directive Sources.1 Aging With Dignity (Five Wishes) www.agingwithdignity.org/five-wishes.php This document helps individuals express care options and preferences. The advance directive meets the legal requirements in most states and is available in 20 languages for a nominal fee. Order online or call 850-681-2010. Caring Connections www.caringinfo.org/ This site offers free, state-specific advance directives for all 50 states and the District of Columbia that meet the legal requirements for each state. Download individual copies for free or call 800-658-8898 to have a copy mailed to you. Center for Practical Bioethics www.practicalbioethics.org/ Caring Conversations is a workbook to help individuals and families communicate with each other about their healthcare preferences and contains advance directive documents. These forms are valid in every state when notarized and signed by two witnesses. Download for free or call 800-344-3829 to order. Compassion and Choices www.compassionandchoices.org/ This site offers an advance care planning tool kit and state-specific advance directive materials. Lifecare Advance Directives www.lifecaredirectives.com/ This site offers free state-standard advance directives for all 50 states, the District of Columbia, and 4 major U.S. territories (American Samoa, Guam, Puerto Rico, and the Virgin Islands). Research-validated comprehensive advance directives, as well as completion guides, agent guides, and other important advance directive support documents, are also available. MedicAlert Foundation www.medicalert.org/ This site offers emergency medical information and identification services, including Do Not Resuscitate medical IDs and option to store advance directives for all 50 states. MyDirectives www.mydirectives.com This site offers a free online platform for completing an advance directive, which is then stored in a secure database available to you and your medical providers 24/7 to ensure one clear, well-thought-out document. My Directives also features a Discussion Guide and Conversation Starters to help patients and families have discussions with doctors, other family, and a healthcare agent. Project GRACE www.projectgrace.org/ Guidelines for Resuscitation and Care at End-of-Life offers a free Advance Care Planning Document that is legally valid in states that do not require forms to be notarized. Download for free, or call 877-99-GRACE to order a copy.
Table 2. Resources for Family Conversations.1 The Conversation Project theconversationproject.org/ Dedicated to helping people talk about their wishes for end-of-life care. They are focused on generating conversations about healthcare wishes with family members and ensuring individuals have thought through what they want at the end of life. DeathWise www.deathwise.org/ Passionate about motivating people to talk about, make decisions, plan for the end of their lives, and then document their wishes in an advance directive to ensure their preferences are communicated to their medical services providers, family, and friends. Wise Conversations provides trained coaches to meet with and guide small groups of people through conversations about clarifying choices and the process of completing advance directives. Engage With Grace www.engagewithgrace.org/ Movement with the goal to help people discuss what’s important to them so their end-of-life experience is just as purposeful as the way in which they live their lives. Their movement calls on people to engage in a blog rally every Thanksgiving and also has a call to action to participate in their One Slide project. The One Slide features just 5 questions designed to get the conversation about end-of-life care started with loved ones. The Engage With Grace Blog Rally has a different theme every year at Thanksgiving and is an opportunity for people to donate their Facebook, Twitter, and Blog updates to raise awareness about the importance of end-of-life conversations. PREPARE www.prepareforyourcare.org/ Referred to as PREPARE For Your Care, this interactive website serves as a resource for families navigating medical decision making.
•• A “living will” documents what kinds of medical treatments an individual would or would not want at the end of life. Tools are available from the NHDD website to obtain free advance directive documents and resources for family conversations that would benefit both the healthcare professional
and the individual and their family. These tools are listed in Tables 1 and 2. Although free forms and decision-making tools have been available for years, various studies indicate that no more than one-third of Americans have completed an advance directive.9 One of the likely reasons for these low figures is that advance care planning tends not to be encouraged by and reinforced by
Downloaded from ncp.sagepub.com at NATIONAL UNIV SINGAPORE on June 28, 2015
254
Nutrition in Clinical Practice 29(2)
healthcare providers. Several potential solutions to this are structural, and providers are encouraged to consider the following: •• Look at your processes and patient flow procedures for all patients: 1. Are patients asked about advance directives only by an admissions/registration clerk with little or no knowledge about the topic? 2. Is there any follow-up about advance directives and advance care planning following the registration process? 3. Does your discharge planning process address advance care planning? 4. Do you have advance directives included in your checklist of documentation for transfers? •• Consider your state laws and resources, affecting how easily the public is able to access and use resources: 1. Could you advocate for changing state law requirements that create extra burdens on the creation of advance directives (ie, reduce complicated witness limitations, notary requirements, mandatory forms/language)? 2. Does your state bar association and/or medical society have resources for advance directives and advance care planning? 3. Does your state have an advance directive registry? •• Consider extending your community outreach to include creating opportunities to engage others who may not have had any exposure to advance care planning: 1. Have you focused all your educational efforts merely within your organization/facility? 2. Have you made any effort to reach underserved populations? 3. Have you recruited anyone else to join the NHDD initiative? 4. Have you shared personal stories about this topic?
Conclusion NHDD provides an opportunity for nutrition clinicians to engage in advance care planning and to inspire and educate patients and their family in the use of advance directives as a communication tool. The ultimate goal is to provide medical therapies, including nutrition support, based on the individual’s wishes during a period in his or her life when decision making becomes difficult during an illness and at end of life. If nutrition clinicians “Lead by Example” and work to develop structured ways to address this goal, it is likely that the care delivered to patients and their families will be more compassionate, more patient centered, and more efficient.
References 1. National Healthcare Decisions Day. http://www.nhdd.org/. Accessed November 25, 2013. 2. Barrocas A, Geppert G, Durfee SM, et al; A.S.P.E.N. Board of Directors. A.S.P.E.N. Ethics position paper. Nutr Clin Pract. 2010;25:672-679. 3. Geppert CMA, Barrocas A, Schwartz DB. Ethics and law. In: Mueller C, McClave SA, Schwartz DB, Kovacevich D, and 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. 4. O’Sullivan Maillet J, Schwartz DB, Posthauer ME. Position of the Academy of Nutrition and Dietetics: ethical and legal issues of feeding and hydration. J Acad Nutr Diet. 2013;113;828-833. 5. Schwartz DB, Posthauer ME, O’Sullivan Maillet J. Practice paper of Academy of Nutrition and Dietetics: ethical and legal issues of feeding and hydration. www.eatright.org/positions 6. Schwartz DB. Integrating patient-centered care and clinical ethics into nutrition practice. Nutr Clin Pract. 2013;28:543-555. 7. Heyland DK, Barwich D, Pichora D, et al; ACCEPT (Advance Care Planning Evaluation in Elderly Patients) Study Team; Canadian Researchers at the End of Life Network (CARENET). Failure to engage hospitalized elderly patients and their families in advance care planning. JAMA Intern Med. 2013;173:778-787. 8. Silveira MJ, Kim SYH, Langa KM. Advance directives and outcomes of surrogate decision making before death. N Engl J Med. 2010;362:1211-1218. 9. U.S. Department of Health and Human Services, Assistant Secretary for Planning and Evaluation, Office of Disability, Aging and Long-Term Care Policy. Advance directives and advance care planning: report to Congress. August 2008. http://aspe.hhs.gov/daltcp/reports/2008/ADCongRpt.htm
Downloaded from ncp.sagepub.com at NATIONAL UNIV SINGAPORE on June 28, 2015
