- Email: [email protected]
An Ethical Perspective on Palliative Care
FROM THE ACADEMY Ethics in Practice
An Ethical Perspective on Palliative Care
A
MULTI-DIMENSIONAL PARAdigm shift in health care continues to spread as palliative care grows into an overarching concept integrated throughout the field. Once thought of in terms of hospice and long-term care units, research indicates that the concept can improve not only quality of life and patient satisfaction, but perhaps extend life as well in patients who might otherwise suffer less-desirable outcomes.1-5 These quantitative results, added to strong anecdotal support, help build a compelling case for the shift, particularly as it appeals to a heightened sense of ethics in terms of beneficence, non-maleficence, and justice. This brings a multi-dimensional dynamic to the discussion of wellness and improved outcomes, and registered dietitian nutritionists (RDNs) accustomed to the concept report it’s completely in line with the profession’s traditional model of optimizing patient health through nutrition. The objective of the present article is to first explain the concept of palliative care, consider it from the perspective of ethics, and
This article was written by Brian Boyce, an award-winning freelance writer in Terre Haute, IN. 2212-2672/Copyright ª 2017 by the Academy of Nutrition and Dietetics. http://dx.doi.org/10.1016/j.jand.2017.01.017 Available online 24 February 2017
The Continuing Professional Education (CPE) quiz for this article is available for free to Academy members through the MyCDRGo app (available for iOS and Android devices) and via www.eatrightPRO.org. Simply log in with your Academy of Nutrition and Dietetics or Commission on Dietetic Registration username and password, go to the My Account section of My Academy Toolbar, click the “Access Quiz” link, click “Journal Article Quiz” on the next page, then click the “Additional Journal CPE quizzes” button to view a list of available quizzes. Non-members may take CPE quizzes by sending a request to [email protected]. There is a fee of $45 per quiz (includes quiz and copy of article) for non-member Journal CPE. CPE quizzes are valid for 1 year after the issue date in which the articles are published.
970
offer examples of challenges faced in the field of nutrition, as well as resources for the practitioner’s benefit. Joy Heimgartner, MS, RDN, CSO, LD, a certified specialist in oncology blood and marrow transplant at the Mayo Clinic in Rochester, MN, said once introduced to the palliative care model, many RDNs might say they’ve actually been practicing this all along. “Nutrition-side, I think it’s always been our job,” she said. Professionals in the field of nutrition would be well-served to learn more about the concept of palliative care as it portends to offer expanded career opportunities by way of dedicated teams and departments, all the while bringing RDNs more seats at the proverbial tables serving patients from pediatric to geriatric, oncology, or diabetes. Some physicians argue that the long-standing association that palliative care has as an alternative to curative care might be inhibiting beneficial program utilization in other areas.2 Lisa Epp, RDN, CNSC, LD, a specialist in home enteral feeding programs with the Mayo Clinic, said more discussions are needed on the topic to help providers understand what palliative care is, and is not. “I think dietitians in particular, and health care professionals in general, need more information on the topic. Many people use the term but don’t fully understand it and how they can make a difference.”
THE PALLIATIVE APPROACH Palliative care is a comprehensive approach focusing on the relief of suffering and improvement of quality of life for patients and caregivers using integrated, multifaceted, multidisciplinary strategies.2,6 Hospitals and long-term care facilities are increasingly dedicating teams and departments to the task, assembling professionals from multiple disciplines. A patient- and family-centered approach, palliative care is proactive in its anticipation and subsequent prevention of suffering associated with
JOURNAL OF THE ACADEMY OF NUTRITION AND DIETETICS
treatments.7 The goal is increasingly becoming to implement these strategies as early in the treatment as possible. This approach continues throughout the continuum of the illness and emphasizes patient access to information and consent. A major goal of the concept is to include the psychological, social, and spiritual needs of those involved, and to do so as early in the treatment as possible.6 And while many in health care still associate the term with hospice, long-term care, or end-of-life treatment, it is in point of fact a much broader concept touching numerous conditions and diseases at all stages. Palliative care is provided both within and outside the Medicare hospice benefit, perhaps leading to some of the confusion. But nonhospice palliative care is coordinated alongside lifeprolonging and curative treatments for patients with complex and lifethreatening conditions. Lisa Dierks, MFCS, RDN, LD, nutrition manager for the Mayo Clinic Healthy Living Program, said she’s watched the palliative model grow and shift over the course of her career, 15 years of which were spent in long-term care and hospital settings. “When I think of palliative care, I think about the discussions taking place,” Dierks said, contrasting that with hospice programs which are typically oriented toward classifications and prognosis-related rules. Dierks said the Mayo Clinic now utilizes departments and teams specifically titled and trained as palliative care operators.
FOR MORE ETHICS INFORMATION:
Academy’s Code of Ethics: http://bit.ly/2jggky2 More resources on the Code of Ethics: http://bit.ly/2jMFENd Academy’s Ethics Toolkit: http://bit.ly/2jfHPIb Questions concerning ethics? E-mail [email protected]
ª 2017 by the Academy of Nutrition and Dietetics.
FROM THE ACADEMY Programs of varying size and complexity offer palliative care at more than 80% of US hospitals sized 300 beds or greater.2 Participating specialists are incorporated from disciplines ranging from nutrition, nursing, rehabilitation, pharmacy, as well as chaplaincy and social work. Conversely, hospice care provides compassionate care for patients facing life-limiting illnesses or conditions.8 Both hospice and palliative care utilize a multi-disciplinary, team-based approach emphasizing pain management, psychological, spiritual, family support, and dignity. Both hospice and palliative care can be afforded patients of any age or diagnosis, but whereas palliative care can fit any prognosis, hospice is reserved for those with no curative hope in plan. Palliative care can thus be incorporated into a hospice plan, but not vice versa. In this sense, hospice is actually a form of palliative care, designed to provide comfort and compassionate care through end-oflife, delivered in the United States by specifically licensed agencies subject to federal regulations.5 Dierks said conversations with patients and caregivers are essential in both models, but qualitatively different due to one working off an expected recovery and the other not. “Having the conversations is key,” Dierks said, recounting a former patient in a long-term care facility who had suffered a broken hip. The elderly patient, who had other comorbidities, she said, abjectly refused tube feeding or thickened liquids. Based on her discussions with the patient, he ultimately opted against a video swallowing test as well and she designed an alternative feeding program in accordance with the physician’s orders. Given that the patient was expected to recover from the hip surgery, and the role nutrition plays in that process, Dierks utilized a palliative-style approach in handling the situation, she said, emphasizing the need to explain choices, potential longterm effects, and recognize the patient’s concern for pain as well as associated difference in costs. Both Dierks and Epp said the importance of advocating what’s best for the individual regardless of financial status is a critical benefit supported by the palliative process. Epp observed that due to the structure of health care reimbursement models, patients are June 2017 Volume 117 Number 6
often unaware of the cost differences between various approaches. In the case of patients who expect to recover, whether pediatric or geriatric, that information is often a consideration for families and patients alike, she said.
ASSOCIATED OUTCOMES The shifting paradigm toward palliative care is supported by diverse professional bodies including the American Academy of Pediatrics and the National Cancer Institute, fueled by research associating it with positive outcomes.5,6 Clinical trials comparing early palliative care plus standard oncological care against standard treatment alone in metastatic non-small-cell lung cancer not only indicate improved quality life and fewer depressive symptoms, but superior survival rates and lessaggressive treatments.1 Meanwhile, the palliative care approach is being demonstrated as having positive effects on the families and caregivers of patients as well.3 Early palliative care approaches introduced to caregivers of advanced cancer patients were shown to reduce depression and stress scores in caregivers in a randomized controlled trial seeking to quantify the phenomenon.3 Another study indicates that early palliative care is correlated with optimized timing of final chemotherapy administration in cancer patients.4 The combination of improved patient and caregiver satisfaction alone can make a big difference to those designing meal plans, some say. Epp said it’s still tough researchwise to tie palliative care directly to improved outcomes, but the connection makes sense to those in the field and has long been conceptually utilized in nutrition. Better levels of comfort lead to improved patient satisfaction, and patients aren’t likely to follow through with painful therapy that makes them uncomfortable, she observed. Malnutrition has long been known to complicate cancer outcomes, making early intervention crucial. And while many RDNs have used palliative-style approaches in this regard, more and more facilities are readying dedicated support teams for the same purpose. This produces a multifaceted dynamic, particularly in the case of patients with comorbidities. Likewise, early intervention by a multidisciplinary palliative
team can have a reverse effect in a positive direction. Heimgartner said that, as an oncology dietitian, these are all pretty familiar concepts. “We may not have recognized it as palliative care, but it was,” Heimgartner said of long-standing traditions in the field regarding educating patients and caregivers about the role of nutrition in their treatment. Oncology treatments in particular can have a plurality of nutrition-related effects on a patient and their family. Pain when swallowing, nausea, and an altered sense of taste can all swirl together for patients who desperately need nutrition.
ETHICS IN MIND Dierks, chair of the Academy of Nutrition and Dietetics Ethics Committee, said the patient-centered, communication-oriented nature of palliative care lends itself to high ethical practice. The term ethics refers to the principles of right conduct, which Dierks explained include: beneficence, or doing good by alleviating suffering; nonmaleficence, or doing no harm; and justice, by way of providing the quality of care to which patients are entitled. The Academy’s Code of Ethics for the Profession of Dietetics offers 19 principles divided into five categories: fundamental principles, responsibilities to the public, responsibilities to clients, responsibilities to the profession, and responsibilities to colleagues and other professions.9 As professionals, RDNs must insure they give enough information to patients so as to facilitate sound decision-making processes. This isn’t always easy, and employing a team approach can be beneficial across all spectrums as comorbidities comingle with treatments and side effects. This is particularly true in cases where quality of life comes into play, Dierks said, emphasizing the importance of obtaining patient directives early in the process. Dierks offered a case study in which a skilled long-term facility patient with severe dementia tells the RDN she no longer wants to be fed via a gastronomy feeding tube. In the example, the patient has no advanced directive, and her daughter wants her to continue being fed. Among the numerous points to consider here is Principle #8 from the Code of Ethics:
JOURNAL OF THE ACADEMY OF NUTRITION AND DIETETICS
971
FROM THE ACADEMY “The dietetics practitioner recognizes and exercises professional judgement within the limits of his/her qualifications and collaborates with others, seeks counsel, or makes referrals as appropriate.”9 One of the benefits to the palliative care approach is the broader, dedicated team whose sole mission is to work toward resolving issues such as this with a balanced approach. As an RDN, Dierks said her role is to help explain to the patient, and in many cases the family, the totality of treatment options, long-term effects, and relationship to recovery, and the palliative care approach aids in that. Unlike a multiple choice test, the right answer in situations like this relies on consensus instead of a one-sizefits-all approach. Heimgartner, who works with patients undergoing stem cell transplant and other proactive cancer treatment strategies, said the difference between palliative and hospice is becoming more relevant as patients are expected to recover and live many years posttreatment. This brings a different element to the discussion of ethics when pain management and medication are involved, she said. “It’s getting to be more of an early diagnosis than late term,” Heimgartner said, adding that now a palliative care team strives to handle pain management from the initial consultation through recovery. The topic of addiction to pain medication is of national concern and forces professionals to make disciplined, collaborative decisions with the patient and family completely informed. Collaborative discussions regarding the long-term effects of the medication and treatments, such as stem cell transplants or pain medication, are qualitatively different depending on the patient’s prognosis, she said. “In my area of practice, there is a lot of fear coming from patients and their families about pain medication and addiction, and those fears may prevent them from seeking stronger pain management when it’s necessary. If, for instance, I have a patient with swallowing pain so bad that they are choosing to spit out saliva rather than swallow it, I’m going to gently remind them that in order for their body to get the nutrition necessary to heal, they are going to have to let us help them with pain. If a patient has heard that 972
‘oxy’ or ‘fentanyl’ have killed rock stars and they want to avoid them, the team is going to discuss benefits and alternatives of those medications,” Heimgartner said. Epp said the issue can become more emotionally complicated when children are involved. “I think sometimes the ethical dilemmas come more with kids because the parents have to make the decisions,” Epp said. In the case of tube feeding pediatric patients, the decision has to be understood and made whether the goal is to feed the patient for growth or life maintenance. This is particularly a concern when a recovery is fully expected and parents may be emotionally conflicted during the process. Epp said that in her experience, the questions get more intense when one has to decide whether or not to discontinue tube feeding as opposed to someone who never had a tube in the first place. “And I think it’s that way with a lot of therapies,” Epp said, explaining that decisions can be impacted by the pain and discomfort being felt by the patient while amid the therapy and it’s imperative to explain the ramifications of decisions. And whereas in prior years hospice patients were unlikely to engage tube feeding, more are opting for it now. “That trend is changing and people are wanting to be fed through end of life.” But with improved nutrition and outcomes often comes an extension of life, bringing with it more needed discussions concerning quality of life and pain management.
treatment. Patients, too, should be informed that the term “palliative care” does not imply recovery is less likely, she said. By integrating discussions concerning pain, comfort, and potential long-term effects into treatment at the onset, patients are more likely to respond positively and adhere to regimens, she said. By formalizing the process through palliative care teams and dedicated departments, the process can achieve a measure of standardization while focusing on the individual patient. This in turn could afford RDNs more career opportunities in diverse settings.
References 1.
Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-742.
2.
Kelley AS, Meier DE. Palliative care—A shifting paradigm. N Engl J Med. 2010;363(8):781-782.
3.
Dionne-Odom JN, Azuero A, Lyons KD, et al. Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: Outcomes from the ENABLE III Randomized Controlled Trial. J Clin Oncol. 2015;33(13):1446-1452.
4.
Greer JA, Pirl WF, Jackson VA, et al. Effect of early palliative care on chemotherapy use and end-of-life care in patients with metastatic non-small-cell lung cancer. J Clin Oncol. 2012;30(4):394-400.
5.
American Academy of Pediatrics. Policy Statement: Pediatric palliative care and hospice care commitments, guidelines, and recommendations. Pediatrics. 2013;132(5):966-972.
6.
National Cancer Institute. Palliative care in cancer. http://www.cancer.gov/about-cancer/ advanced-cancer/care-choices/palliative-carefact-sheet#q14. Accessed July 29, 2016.
7.
National Hospice and Palliative Care Organization. Palliative care. http://www. nhpco.org/palliative-care-4. Accessed July 27, 2016.
8.
National Hospice and Palliative Care Organization. Hospice care. http://www. nhpco.org/about/hospice-care. Accessed July 27, 2016.
9.
Academy of Nutrition and Dietetics. Code of Ethics for the Profession. http:// www.eatrightpro.org/w/media/eatrightpro %20files/career/code%20of%20ethics/code ofethicsdieteticsresources.ashx. Accessed July 29, 2016.
10.
Murtagh FE, Bausewein C, Verne J, Groeneveld EI, Kaloki YE, Higginson IJ. How many people need palliative care? A study developing and comparing methods for population-based estimates. Palliat Med. 2014;28(1):49-58.
11.
Laurance J, Henderson S, Howitt PJ, et al. Patient Engagement: Four case studies that highlight the potential for improved health outcomes and reduced costs. Health Aff (Millwood). 2014;33(9): 1627-1634.
CONTINUED DEVELOPMENT The trend toward a palliative approach shows no signs of slowing, and some research indicates between 69% and 82% of patients in high-income countries need this style of care.10 Similarities between the palliative care and patient activation models are noteworthy as research indicates the latter is also correlated with improved outcomes and costs.11 In the case of patients suffering comorbidities, RDNs are already accustomed to communicating with colleagues from associated specialties. Heimgartner said more information needs to be disseminated about the topic so as to remove the “stigma” many have associating palliative care exclusively with end-of-life
JOURNAL OF THE ACADEMY OF NUTRITION AND DIETETICS
June 2017 Volume 117 Number 6
An Ethical Perspective on Palliative Care
A
MULTI-DIMENSIONAL PARAdigm shift in health care continues to spread as palliative care grows into an overarching concept integrated throughout the field. Once thought of in terms of hospice and long-term care units, research indicates that the concept can improve not only quality of life and patient satisfaction, but perhaps extend life as well in patients who might otherwise suffer less-desirable outcomes.1-5 These quantitative results, added to strong anecdotal support, help build a compelling case for the shift, particularly as it appeals to a heightened sense of ethics in terms of beneficence, non-maleficence, and justice. This brings a multi-dimensional dynamic to the discussion of wellness and improved outcomes, and registered dietitian nutritionists (RDNs) accustomed to the concept report it’s completely in line with the profession’s traditional model of optimizing patient health through nutrition. The objective of the present article is to first explain the concept of palliative care, consider it from the perspective of ethics, and
This article was written by Brian Boyce, an award-winning freelance writer in Terre Haute, IN. 2212-2672/Copyright ª 2017 by the Academy of Nutrition and Dietetics. http://dx.doi.org/10.1016/j.jand.2017.01.017 Available online 24 February 2017
The Continuing Professional Education (CPE) quiz for this article is available for free to Academy members through the MyCDRGo app (available for iOS and Android devices) and via www.eatrightPRO.org. Simply log in with your Academy of Nutrition and Dietetics or Commission on Dietetic Registration username and password, go to the My Account section of My Academy Toolbar, click the “Access Quiz” link, click “Journal Article Quiz” on the next page, then click the “Additional Journal CPE quizzes” button to view a list of available quizzes. Non-members may take CPE quizzes by sending a request to [email protected]. There is a fee of $45 per quiz (includes quiz and copy of article) for non-member Journal CPE. CPE quizzes are valid for 1 year after the issue date in which the articles are published.
970
offer examples of challenges faced in the field of nutrition, as well as resources for the practitioner’s benefit. Joy Heimgartner, MS, RDN, CSO, LD, a certified specialist in oncology blood and marrow transplant at the Mayo Clinic in Rochester, MN, said once introduced to the palliative care model, many RDNs might say they’ve actually been practicing this all along. “Nutrition-side, I think it’s always been our job,” she said. Professionals in the field of nutrition would be well-served to learn more about the concept of palliative care as it portends to offer expanded career opportunities by way of dedicated teams and departments, all the while bringing RDNs more seats at the proverbial tables serving patients from pediatric to geriatric, oncology, or diabetes. Some physicians argue that the long-standing association that palliative care has as an alternative to curative care might be inhibiting beneficial program utilization in other areas.2 Lisa Epp, RDN, CNSC, LD, a specialist in home enteral feeding programs with the Mayo Clinic, said more discussions are needed on the topic to help providers understand what palliative care is, and is not. “I think dietitians in particular, and health care professionals in general, need more information on the topic. Many people use the term but don’t fully understand it and how they can make a difference.”
THE PALLIATIVE APPROACH Palliative care is a comprehensive approach focusing on the relief of suffering and improvement of quality of life for patients and caregivers using integrated, multifaceted, multidisciplinary strategies.2,6 Hospitals and long-term care facilities are increasingly dedicating teams and departments to the task, assembling professionals from multiple disciplines. A patient- and family-centered approach, palliative care is proactive in its anticipation and subsequent prevention of suffering associated with
JOURNAL OF THE ACADEMY OF NUTRITION AND DIETETICS
treatments.7 The goal is increasingly becoming to implement these strategies as early in the treatment as possible. This approach continues throughout the continuum of the illness and emphasizes patient access to information and consent. A major goal of the concept is to include the psychological, social, and spiritual needs of those involved, and to do so as early in the treatment as possible.6 And while many in health care still associate the term with hospice, long-term care, or end-of-life treatment, it is in point of fact a much broader concept touching numerous conditions and diseases at all stages. Palliative care is provided both within and outside the Medicare hospice benefit, perhaps leading to some of the confusion. But nonhospice palliative care is coordinated alongside lifeprolonging and curative treatments for patients with complex and lifethreatening conditions. Lisa Dierks, MFCS, RDN, LD, nutrition manager for the Mayo Clinic Healthy Living Program, said she’s watched the palliative model grow and shift over the course of her career, 15 years of which were spent in long-term care and hospital settings. “When I think of palliative care, I think about the discussions taking place,” Dierks said, contrasting that with hospice programs which are typically oriented toward classifications and prognosis-related rules. Dierks said the Mayo Clinic now utilizes departments and teams specifically titled and trained as palliative care operators.
FOR MORE ETHICS INFORMATION:
Academy’s Code of Ethics: http://bit.ly/2jggky2 More resources on the Code of Ethics: http://bit.ly/2jMFENd Academy’s Ethics Toolkit: http://bit.ly/2jfHPIb Questions concerning ethics? E-mail [email protected]
ª 2017 by the Academy of Nutrition and Dietetics.
FROM THE ACADEMY Programs of varying size and complexity offer palliative care at more than 80% of US hospitals sized 300 beds or greater.2 Participating specialists are incorporated from disciplines ranging from nutrition, nursing, rehabilitation, pharmacy, as well as chaplaincy and social work. Conversely, hospice care provides compassionate care for patients facing life-limiting illnesses or conditions.8 Both hospice and palliative care utilize a multi-disciplinary, team-based approach emphasizing pain management, psychological, spiritual, family support, and dignity. Both hospice and palliative care can be afforded patients of any age or diagnosis, but whereas palliative care can fit any prognosis, hospice is reserved for those with no curative hope in plan. Palliative care can thus be incorporated into a hospice plan, but not vice versa. In this sense, hospice is actually a form of palliative care, designed to provide comfort and compassionate care through end-oflife, delivered in the United States by specifically licensed agencies subject to federal regulations.5 Dierks said conversations with patients and caregivers are essential in both models, but qualitatively different due to one working off an expected recovery and the other not. “Having the conversations is key,” Dierks said, recounting a former patient in a long-term care facility who had suffered a broken hip. The elderly patient, who had other comorbidities, she said, abjectly refused tube feeding or thickened liquids. Based on her discussions with the patient, he ultimately opted against a video swallowing test as well and she designed an alternative feeding program in accordance with the physician’s orders. Given that the patient was expected to recover from the hip surgery, and the role nutrition plays in that process, Dierks utilized a palliative-style approach in handling the situation, she said, emphasizing the need to explain choices, potential longterm effects, and recognize the patient’s concern for pain as well as associated difference in costs. Both Dierks and Epp said the importance of advocating what’s best for the individual regardless of financial status is a critical benefit supported by the palliative process. Epp observed that due to the structure of health care reimbursement models, patients are June 2017 Volume 117 Number 6
often unaware of the cost differences between various approaches. In the case of patients who expect to recover, whether pediatric or geriatric, that information is often a consideration for families and patients alike, she said.
ASSOCIATED OUTCOMES The shifting paradigm toward palliative care is supported by diverse professional bodies including the American Academy of Pediatrics and the National Cancer Institute, fueled by research associating it with positive outcomes.5,6 Clinical trials comparing early palliative care plus standard oncological care against standard treatment alone in metastatic non-small-cell lung cancer not only indicate improved quality life and fewer depressive symptoms, but superior survival rates and lessaggressive treatments.1 Meanwhile, the palliative care approach is being demonstrated as having positive effects on the families and caregivers of patients as well.3 Early palliative care approaches introduced to caregivers of advanced cancer patients were shown to reduce depression and stress scores in caregivers in a randomized controlled trial seeking to quantify the phenomenon.3 Another study indicates that early palliative care is correlated with optimized timing of final chemotherapy administration in cancer patients.4 The combination of improved patient and caregiver satisfaction alone can make a big difference to those designing meal plans, some say. Epp said it’s still tough researchwise to tie palliative care directly to improved outcomes, but the connection makes sense to those in the field and has long been conceptually utilized in nutrition. Better levels of comfort lead to improved patient satisfaction, and patients aren’t likely to follow through with painful therapy that makes them uncomfortable, she observed. Malnutrition has long been known to complicate cancer outcomes, making early intervention crucial. And while many RDNs have used palliative-style approaches in this regard, more and more facilities are readying dedicated support teams for the same purpose. This produces a multifaceted dynamic, particularly in the case of patients with comorbidities. Likewise, early intervention by a multidisciplinary palliative
team can have a reverse effect in a positive direction. Heimgartner said that, as an oncology dietitian, these are all pretty familiar concepts. “We may not have recognized it as palliative care, but it was,” Heimgartner said of long-standing traditions in the field regarding educating patients and caregivers about the role of nutrition in their treatment. Oncology treatments in particular can have a plurality of nutrition-related effects on a patient and their family. Pain when swallowing, nausea, and an altered sense of taste can all swirl together for patients who desperately need nutrition.
ETHICS IN MIND Dierks, chair of the Academy of Nutrition and Dietetics Ethics Committee, said the patient-centered, communication-oriented nature of palliative care lends itself to high ethical practice. The term ethics refers to the principles of right conduct, which Dierks explained include: beneficence, or doing good by alleviating suffering; nonmaleficence, or doing no harm; and justice, by way of providing the quality of care to which patients are entitled. The Academy’s Code of Ethics for the Profession of Dietetics offers 19 principles divided into five categories: fundamental principles, responsibilities to the public, responsibilities to clients, responsibilities to the profession, and responsibilities to colleagues and other professions.9 As professionals, RDNs must insure they give enough information to patients so as to facilitate sound decision-making processes. This isn’t always easy, and employing a team approach can be beneficial across all spectrums as comorbidities comingle with treatments and side effects. This is particularly true in cases where quality of life comes into play, Dierks said, emphasizing the importance of obtaining patient directives early in the process. Dierks offered a case study in which a skilled long-term facility patient with severe dementia tells the RDN she no longer wants to be fed via a gastronomy feeding tube. In the example, the patient has no advanced directive, and her daughter wants her to continue being fed. Among the numerous points to consider here is Principle #8 from the Code of Ethics:
JOURNAL OF THE ACADEMY OF NUTRITION AND DIETETICS
971
FROM THE ACADEMY “The dietetics practitioner recognizes and exercises professional judgement within the limits of his/her qualifications and collaborates with others, seeks counsel, or makes referrals as appropriate.”9 One of the benefits to the palliative care approach is the broader, dedicated team whose sole mission is to work toward resolving issues such as this with a balanced approach. As an RDN, Dierks said her role is to help explain to the patient, and in many cases the family, the totality of treatment options, long-term effects, and relationship to recovery, and the palliative care approach aids in that. Unlike a multiple choice test, the right answer in situations like this relies on consensus instead of a one-sizefits-all approach. Heimgartner, who works with patients undergoing stem cell transplant and other proactive cancer treatment strategies, said the difference between palliative and hospice is becoming more relevant as patients are expected to recover and live many years posttreatment. This brings a different element to the discussion of ethics when pain management and medication are involved, she said. “It’s getting to be more of an early diagnosis than late term,” Heimgartner said, adding that now a palliative care team strives to handle pain management from the initial consultation through recovery. The topic of addiction to pain medication is of national concern and forces professionals to make disciplined, collaborative decisions with the patient and family completely informed. Collaborative discussions regarding the long-term effects of the medication and treatments, such as stem cell transplants or pain medication, are qualitatively different depending on the patient’s prognosis, she said. “In my area of practice, there is a lot of fear coming from patients and their families about pain medication and addiction, and those fears may prevent them from seeking stronger pain management when it’s necessary. If, for instance, I have a patient with swallowing pain so bad that they are choosing to spit out saliva rather than swallow it, I’m going to gently remind them that in order for their body to get the nutrition necessary to heal, they are going to have to let us help them with pain. If a patient has heard that 972
‘oxy’ or ‘fentanyl’ have killed rock stars and they want to avoid them, the team is going to discuss benefits and alternatives of those medications,” Heimgartner said. Epp said the issue can become more emotionally complicated when children are involved. “I think sometimes the ethical dilemmas come more with kids because the parents have to make the decisions,” Epp said. In the case of tube feeding pediatric patients, the decision has to be understood and made whether the goal is to feed the patient for growth or life maintenance. This is particularly a concern when a recovery is fully expected and parents may be emotionally conflicted during the process. Epp said that in her experience, the questions get more intense when one has to decide whether or not to discontinue tube feeding as opposed to someone who never had a tube in the first place. “And I think it’s that way with a lot of therapies,” Epp said, explaining that decisions can be impacted by the pain and discomfort being felt by the patient while amid the therapy and it’s imperative to explain the ramifications of decisions. And whereas in prior years hospice patients were unlikely to engage tube feeding, more are opting for it now. “That trend is changing and people are wanting to be fed through end of life.” But with improved nutrition and outcomes often comes an extension of life, bringing with it more needed discussions concerning quality of life and pain management.
treatment. Patients, too, should be informed that the term “palliative care” does not imply recovery is less likely, she said. By integrating discussions concerning pain, comfort, and potential long-term effects into treatment at the onset, patients are more likely to respond positively and adhere to regimens, she said. By formalizing the process through palliative care teams and dedicated departments, the process can achieve a measure of standardization while focusing on the individual patient. This in turn could afford RDNs more career opportunities in diverse settings.
References 1.
Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-742.
2.
Kelley AS, Meier DE. Palliative care—A shifting paradigm. N Engl J Med. 2010;363(8):781-782.
3.
Dionne-Odom JN, Azuero A, Lyons KD, et al. Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: Outcomes from the ENABLE III Randomized Controlled Trial. J Clin Oncol. 2015;33(13):1446-1452.
4.
Greer JA, Pirl WF, Jackson VA, et al. Effect of early palliative care on chemotherapy use and end-of-life care in patients with metastatic non-small-cell lung cancer. J Clin Oncol. 2012;30(4):394-400.
5.
American Academy of Pediatrics. Policy Statement: Pediatric palliative care and hospice care commitments, guidelines, and recommendations. Pediatrics. 2013;132(5):966-972.
6.
National Cancer Institute. Palliative care in cancer. http://www.cancer.gov/about-cancer/ advanced-cancer/care-choices/palliative-carefact-sheet#q14. Accessed July 29, 2016.
7.
National Hospice and Palliative Care Organization. Palliative care. http://www. nhpco.org/palliative-care-4. Accessed July 27, 2016.
8.
National Hospice and Palliative Care Organization. Hospice care. http://www. nhpco.org/about/hospice-care. Accessed July 27, 2016.
9.
Academy of Nutrition and Dietetics. Code of Ethics for the Profession. http:// www.eatrightpro.org/w/media/eatrightpro %20files/career/code%20of%20ethics/code ofethicsdieteticsresources.ashx. Accessed July 29, 2016.
10.
Murtagh FE, Bausewein C, Verne J, Groeneveld EI, Kaloki YE, Higginson IJ. How many people need palliative care? A study developing and comparing methods for population-based estimates. Palliat Med. 2014;28(1):49-58.
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CONTINUED DEVELOPMENT The trend toward a palliative approach shows no signs of slowing, and some research indicates between 69% and 82% of patients in high-income countries need this style of care.10 Similarities between the palliative care and patient activation models are noteworthy as research indicates the latter is also correlated with improved outcomes and costs.11 In the case of patients suffering comorbidities, RDNs are already accustomed to communicating with colleagues from associated specialties. Heimgartner said more information needs to be disseminated about the topic so as to remove the “stigma” many have associating palliative care exclusively with end-of-life
JOURNAL OF THE ACADEMY OF NUTRITION AND DIETETICS
June 2017 Volume 117 Number 6