February 15, 2015, 10:30-12 PM, Long Beach, California
Written and performed by the International Clinical Ethics Section of A.S.P.E.N. members to educate, engage, and empower healthcare clinicians in communication skills with patients and family members.
Each of the 3 acts in the play is a separate vignette. Begin your comments and questions now, attend the session in Long Beach, California, and continue your questions after CNW15.
I am so looking forward to this session! Ethical issues arise daily in many of our practice settings, and I know this session will be invaluable, to engage us in much-needed discussion, about the types of ethical scaenarios that we encounter, as well as strategies that can help, as we work with Healthcare professionals, patients, and families, when we are faced with these (often VERY challengng) situations. Hope to see you all at the session! Sunday, Feb 15th, 10:30 – Noon, Long Beach Convention Centre,
I want to applaud your efforts in addressing the many issues related to nutrition in seriously ill patients. As a palliative care nurse and researcher, these issues remain as priorities and as a key source of ethical concern and distress for patients , families and professionals. Your innovative teaching through the drama should be an excellent way to promote dialogue on these issues, which will only become more important in the future of an aging society.
Betty Ferrell PhD, RN
City of Hope Medical Center
Thank you Betty Ferrell, we are delighted that you would comment about THE PLAY, especially due to your clinical expertise and research in quality of life and palliative care; Principal Investigator of the End-of-Life Nutrition Education Consortium; on faculty at City of Hope Medical Center in Duarte, California; and editor of the Journal of Hospice and Palliative Nursing.
Recently I was delighted to learn about your course the Comfort Communication for Palliative Care Teams, the course curriculum provided a wealth of knowledge on this topic. Additional information is available at: http://www.pccinstitute.com
Also, Betty is the lead editor of the 2015 publication: Oxford Textbook of Palliative Nursing 4th Edition Edited by Betty R. Ferrell, Nessa Coyle, Judith A. Paice
Chapters in the text beneficial for nutrition support clinicians include:
Communication in Palliative Care: An Essential Competency for Nurses
Artificial Nutrition and Hydration
Withdrawal of Life-Sustaining Therapies Mechanical Ventilation, Dialysis, and Cardiac Devices
The Intensive Care Unit
International Palliative Care Initiatives
Our patients look to the health care team to help them make tough decisions. However, it is up to us to provide support and “options” as we discuss in the scenarios to be presented at CNW on February 15 in Long Beach. It is good to know that there are options and that the family can hear these and feel good about them. A friend recently asked me for help in understanding these options. Through my own personal experiences as well as through what I have learned through these scenarios, I was better prepared to assist. She and her family made the decision of whether or not to place a feeding tube for her elderly relative with cancer. The tube was placed and about 45 days later, he passed away. Good or bad decision is not debatable – it was an informed decision.. These are the types of ethical dilemmas faced every day.
It is great that these ethical dilemmas are being addressed in a creative and interesting way. I suspect this will be great learning for all involved. Thanks for the mention of The Conversation Project in the Act 1 comments.
-Kelly McCutcheon Adams, LICSW
Director, Institute for Healthcare Improvement
I”m very much looking forward to the format of this session hosted by the International Clinical Ethics Section of A.S.P.E.N! It’s sure to be a great learning opportunity and a format that will help attendees with the dialogue in these difficult situations.
Feeding tubes are good for all.
Placing feeding tubes helps to decrease patient suffering.
Giving people basic nutrition and hydration are not extraordinary measures. They provide for basic human needs that are necessary for comfort and allieviation of suffering.
Placing feedings tubes also makes sense economically. People/patients can be more easily be transferred to lower levels of care (nursing homes, hospice, or home) from expensive hospital beds.
And feeding tubes are not permanent and can also be removed at any time if the situation changes. Or they can be closed and clamped to keep all options open.
Feeding tubes are good and generally should be placed, unless a medical condition, such as septic shock, an intra-abdominal malignancy, adhesions, or portal hypertension make placing the tube too dangerous.
As is often the case in Medicine, regarding tube feedings ; “there is never always and there is never never”.
Appropriate indications and guidelines for use of feeding tubes have been developed and continue to be revised as new evidence is identified. The current Evidence Based Medicine (EBM) supports forgoing tube feedings in advanced dementia and end-of-life situations on the basis of higher burdens & risks/benefits ratio.
While food and water meet “basic human needs” the majority of clinicians, theologians, ethicists, courts, statutes, attorneys and judges consider artificial nutrition and hydration (ANH) as extra-ordinary interventions.
“Comfort and alleviation of suffering” can be provided by forgoing ANH in selected patients. The scientific basis for those conclusions are in part summarized in the two references below.
While circumstances regarding the criteria for transfer to nursing homes(NH) usually require ANH for patients unable to ingest food orally, the same is not true for hospice or home transfer. The NH transfer and required tube feeding can present a dilemma for patients who may elect to forgo ANH, but are required to do so because of State laws and regulations (The Troubling Trichotomy).
Because feeding tubes are not without burdens and risks, their indiscriminate use should be avoided. If the possible benefits arise, then a time-limited trial should be considered.
The main tenet to be considered when discussing tube feedings is to respect the patient/surrogate’s decision maker autonomy. In so doing it is incumbent on all of us to provide EBM regarding benefits, burdens and risks of tube feedings, both short and long term including the prognosis with and without the intervention.
This information can be delivered via a crucial/critical conversation between the well-versed interdisciplinary team and the patient/family in language which they can understand.
Refs:
1.A.S.P.E.N. Ethics Position paper. Nutr Clin Pract. December 2010 Vol 25(6) 672-679.
2.Gastrostomy Tube Placement in Patients with Advanced Dementia or Near End of Life. Nutr Clun Pract. December 2014 29(6): 829-840.
Well considered thoughts!
Much appreciated and very helpful!
a. Cancer of the GI tract (primary or metastatic): high risk for the placement of PEGs and feeding tubes. I would fully agree that feeding tubes in these situations could hasten the death of patients because of the high risk of complications.
b. Catholic teaching: Pope Paul II stated in 2004 that artificial admininstration of nutrition and hydration is in principle an ordinary and proportionate means of preserving life. He said that a person in a vegetative state has a right to basic health care, including cleanliness, warmth, nutrition and hydration. He said that it’s morally obligatory as long as it does what it’s supposed to do: nourish and allieviate suffering.
c. Does providing hydration and nutrition mean that we are providing “extra-ordinary” measures? With respect, I think not.
1. John Paul II: Address of John Paul II to the Participants in the International Congress on “Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas. 2004.
2. O’Neil K, Black P: Life, Death, and Catholic Medical Choices: 50 Questions From the Pews. Ligouri Publications, 2011.
In last paragraph of my previous reply meant to state “transdisciplinary” rather than “interdisciplinary”
Thanks to Dr, Meade for his insightful comments and references.
While I respectfully hold the opinion that artificial nutrition and hydration are “extra-ordinary” measures in contrast to Dr. Meade I concur with his other statements in his most recent post with the following considerations:
1. The evidence supporting forgoing ANH I referred to is limited to severe dementia and end-of life situations, not patients in a Persistent/Permanent Vegetative State, which was the specific group that was the focus of Pope John Paul II 2004 allocution.
2. Dr. Meade’s comment that “it’s morally obligatory as long as it does what it’s supposed to do: nourish and alleviate suffering” is in concert with the US Conference Of Catholic Bishops 2011 Q&A approved Pope Benedict XVI and reportedly published in the September 15 2011 edition of the weekly L’Osservatore Romano
“5) Are there possible cases when it would be moral to withhold or withdraw nutrition and hydration from the patient in a “vegetative state”?
Yes. They could be withheld if the available means for administering nutrition and hydration were not effective in providing the patient with nourishment (for example, because the patient can no longer assimilate these), or if the means itself constituted a burden (for example, because
the feeding tube is for some reason causing persistent infections). The Commentary notes that such situations are rare. It also notes that the obligation to provide artificially assisted food and fluids may not bind in situations of extreme poverty or in the absence of a modern health care
system, because one is not held to do what is impossible.”
http://www.usccb.org/issues-and-action/human-life-and-dignity/end-of-life/euthanasia/upload/q-a-nutrition-and-hydration-patients-vegetative-state.pdf
3.Notwithstanding the disparate opinions regarding ordinary vs. extra-ordinary, I hope we can all agree that paramount in these deliberations is the recognition that it s not our beliefs, but rather the one of the patient/surrogate decision makers which is the final determinant of what should be done, provided the trandisciplinary team provides thorough, credible information. These are great opportunities to epitomize the concepts of patient/family- centered care as championed by our Section Chair Denise Baird Schwartz.
4.Thanks again Dr. Meade for your contributions.
Thanks Denise Baird Schwartz for putting this together. Such a necessary and important topic. What a creative and meaningful way to bring this issue to light.
Kelly McCutcheon Adams, thank you for your comment. As Director at Institute for Healthcare Improvement, I know you are working on a White Paper in the month ahead about the Conversation Ready learning and looking forward to your seminar in April 2015 about this learning.
The Program is entitled: Reliably Receive, Record, and Respect End-of-Life Care Wishes for Every Individual, Every Time. The content is applicable to diverse patient populations in multiple settings, and to many different members of teams both within and outside of health care. For more information
http://www.ihi.org/education/InPersonTraining/2015ConversationReadySeminar/Pages/default.aspx
I look forward to the White Paper on this topic and tools that we can use to improve this process.
Can’t wait to see the show!
I think the format is great and a fantastic approach to deal with a painful and difficult issue that many of us in nutritional care face all of the time.
Being Mortal and The Conversation
I want to thank Albert Barrocas for including in this blog “The Troubling Trichotomy”, a phrase that he coined, and Dan Teitelbaum for bringing awareness to the concept that many of us in the field of nutrition face these painful and difficult situations all of the time.In the Troubling Trichotomy there are 3 areas applicable in nutrition support: 1) The “Can” of nutrition support technology; 2) The “Should” of bioethics; and 3) The “Must” of the law.
Our session is focused on number 2, which includes clinical ethics and effective communication, both verbal and non-verbal, between healthcare professionals, patients and their family members, especially when providing life-sustaining medical therapies, including nutrition support.
Two physicians have recently published books about their own personal experience on this topic. Atul Gawande, author of Being Mortal will be discussing the need to improve the conversations in a documentary series FRONTLINE, February 10, 2015. Here is a link to a clip of the documentary: http://to.pbs.org/15q9w6f Angelo Volandes takes the reader through his experience with his father in The Conversation and how this has changed his perspective on what patients also want from their healthcare providers.
Thanks Denise for organizing this and using the theatre to highlight an incredibly important issue that many patients and families are facing in our hospitals, skilled nursing facilities, and other healthcare facilities. The theatre is a wonderful way by which people can be transported to new worlds, including our world. It helps make what we see and do (and take for granted) accessible and understandable. Thanks also for mentioning my book The Conversation which follows the end of life experiences of seven patients. It is a memoir (of my experiences as a clinician and researcher), a guide for patients, and, in some ways, my confession. It is also my attempt to help put patients back at the center of their care so that the care that they receive honors what is important to them.
Unfortunately I wasn’t able to see this play, but I’ve read the playbill and wished I could have been there! I’m no expert, but it seems to me that all three of the scenarios point to a central truth: that sometimes what we consider to be “ethical dilemmas” aren’t really that at all. Instead they are problems that have arisen because of the lack of adequate communication between caretakers and patients and/or families. It’s sometimes the case that once everyone is on the same page and understands what the problems and stakes are, that acceptable solutions emerge. This play goes a long way toward achieving those goals! Thank you!
Thank you Elizabeth Reis for your comment about the Playbill and the goal of our play. I have shared the article that you wrote in New York Times, most recently with Biomedical Ethics Committees at two different hospitals. http://well.blogs.nytimes.com/2014/12/01/hoping-for-a-good-death/?_r=0
Your article is important for both clinicians and individuals not in healthcare, because after reading the first paragraph one begins to realize that at each healthcare institution there needs to be an established process to obtain advance directives and begin early discussion on healthcare the patient’s wishes and a consistent healthcare team approach.
Hoping for a Good Death
“My 78-year-old father died recently after a sudden heart attack. I ought to have been prepared for the five days my mother, brother and I spent with him in the cardiac intensive care unit because I teach medical ethics at a university, and I am a member of a hospital ethics committee and have discussed many difficult end-of-life cases. But much of what happened−and what didn’t happen− came as a surprise to me.”
1. 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, pp 656-676.
2. Schwartz DB. Integrating patient-centered care and clinical ethics into nutrition practice. Nutr Clinc Prac. 2013;28:543-555.
3. Armanios A, Schwartz DB, August D, Frankel E, ; Sussman E, Monturo C, Pontes-Arruda A. Clinician Attitudes Concerning Ethical Practice in Nutrition Care: A.S.P.E.N Member Perspective. Oral abstract at Clinical Nutrition Week 2015, Long Beach, California.
Thanks Denise for organizing this and using the theatre to highlight an incredibly important issue that many patients and families are facing in our hospitals, skilled nursing facilities, and other healthcare facilities. The theatre is a wonderful way by which people can be transported to new worlds, including our world. It helps make what we see and do (and take for granted) accessible and understandable. Thanks also for mentioning my book The Conversation which follows the end of life experiences of seven patients. It is a memoir (of my experiences as a clinician and researcher), a guide for patients, and, in some ways, my confession. It is also my attempt to help put patients back at the center of their care so that the care that they receive honors what is important to them.
Yet another situation has come up with the opportunity to pre-plan what to do with a loved one. A friend and I discussed the options for her sister (for whom she has custodial care) from “do everything” to comfort care. My friend had already thought she wanted comfort care for her sister but in discussing the options, it became clear how appropriate this would be given the situation. She isn’t there yet – and hopefully not any time soon – but she is confident in her options and her decision. And looks forward to enjoying life…today.
I’m sorry I will not be able to attend as I know this will be a very enlightening experience. I live in an area where a certain organization harasses patients and their loved ones if they select to have a feeding tube placed and will do everything in their power including misrepresentation of the patient’s condition to avoid using the feeding tube. I’ve got a very close friend whose mother had a severe stroke. My friend was told initially she needed to place a feeding tube and transfer her mother to long term care which she did do. While visiting her mother at this facility she made the decision she was going to care for her mother at home so the facility made the arrangements to transfer care and transferred her mother home. The organization that assumed care was against tube feeding. Despite the mother’s living will and the daughter’s desire to feed and power of attorney the organization tried everything to avoid feeding including stating the mother’s system was” shutting down and not processing tube feeding”. The mother had regular bowel movements an adequate uri ne output. Despite this the organization providing care convinced the daughter to keep tube feeding at 20mL/hr. As an RDN I watched the situation while my friend’s mother rapidly lost weight. Three months into the situation I couldn’t continue to watch and do nothing. I sat my friend down and gently asked what her goals with her mother were since it was clear she was not going to recover from her stroke. I asked what she’d see as a worse case scenario since I’d in addition to inadequate had seen the caring organization provide a blood pressure medication when the mother’s pressure was 80/60 and had told the neighbor who was sitting at the bed reading a change in coumadin dose. After my discussion my friend decided the worst case would be her mother dying from an infection from a decubitus ulcer. I advised my friend given the lack of nutrition combined with being bedridden I thought her worst fear was likely. She decided she wanted full support but was afraid of the agency providing care. She set up the meeting and at the last minute she couldn’t attend by herself. I left work to provide emotional support. I found I needed to provide more than emotional support because the agency was very clear they were against tube feeding. I heard every excuse. I found I needed to question everything stated. Fortunately the physician had attended the meeting. This agency was also putting one family member against another trying to stop the tube feeding. I finally had to point out the daughter had power of attorney which the agency said they didn’t know which made them change their mind. We initiated full feeding and the mother regained all her weight and was maintained without any issues. Several years later the daughter called to tell me her mother was acutely dying. I asked how she knew that and was told because her pulse oximetry was low. My family was in town for my older brother’s funeral and we were using the mother’s house. I went to see the mother and found a huge hematoma in her leg. The mother was on coumadin and they’d not followed the INR causing the mother to bleed. She had excellent urine output, was processing her tube feeding without problems she just had a huge hematoma. I explained why the pulse ox was low. The agency was not pleased and Monday they abruptly called the daughter stating the mother wasn’t dying as expected so they were withdrawing their services. They were not willing to set up care with another agency before they withdrew their equipment which included the bed her mother was sleeping in. The daughter was in a panic. My hands were tied because legally I’ve got no authority to order anything. I had to find a way to help my friend. I was able to locate a physician service that made housecalls. They went to the house that day, spending over two hours with the daughter, completed a full physical with labs,xrays,and EKG. They showed the daughter the hematoma I’d noticed the previous Friday and explained the pulse ox the same way I had bringing reassurance to the daughter. Since the daughter didn’t want to transfer her mother to a hospital to obtain PRBC the doctor ordered epogen. He accepted my assessment and changed the tube feeding to meet my recommendations. The woman lasted several more years and ultimately died from pneumonia after an osteoporosis fracture. My point in this submission is there are many times when we try to provide what the patient/client and family want, but we have issues with care organizations. Even though it seems as if our hands are tied we must never give up. We owe it to our clients to provide what they want and we must not follow the misguided attempts to change care by uneducated agencies.
Rita Frank, thank you for this amazing story and your role as a nutrition support clinician in improving the outcome based on the patient’s wishes.
This case brings out 4 significant points:
1. Importance of having an up to date advance directive.
2. Selection of an informed and engaged proxy.
3. Role of a family care conference with stakeholders present.
4. Need for education of the patient/family, healthcare professionals and institutions/agencies on the role of nutrition therapies in achieving the patient’s quality of life goals.
RECAP of #Being Mortal on PBS FRONTLINE by Atul Gawande
•Conversations with doctors and patients
•Struggle between hope and making peace with the end
•Front line of social change
•What happens if you can’t fix it?
•Can’t fix aging and dying
•Being equipped and do well with having the conversation
•Struggles with different choices
•Can give some hope, but without unrealistic expectations
•Technique involves listening, as well as talking
•Making a difference in our patient’s lives with having important conversations
•Pause at the right time in the conversation; the patient and family members have
to take in a lot of information
•When up against unfixable problems, it matters what the patient/family member’s
feelings are about this time
•It is important for the individual to be a person, not just a patient
At CNW15 Help Drive the Social Change to Patient-Centered Care with the Conversation:
1. Complete A.S.P.E.N. Member Survey on Clinical Ethics at Clinical Nutrition Week
15 in Long Beach, California, February 14-17, 2015
2. Obtain Survey at Ethics Sessions during CNW15
• Ethical Dilemmas in Communication Across the Age Spectrum: A Theatrical
Presentation, February 15, 2015 10:30-12 PM Room 203AB
• International Clinical Ethics Section Meeting, February 17, 6:30-7:45 AM Room 201A
3. Attend Nutrition and Metabolism Research Paper session February 15, 2-3:30 PM,
Room 103. Abstract on Clinician Attitudes Concerning Ethical Practice in Nutrition
Care: A.S.P.E.N. Member Perspective will presented during this session
Denise,
I would like to congratulate you on “The Play” at CNW15. It was an insightful journey through the critical care setting. This play was filled with laughter, tears, and moments of awe. We were able to see how communication with family and professionals can go wrong and how it is up to the professionals to turn it around, in act 1. We lived through the grief of the child’s mother, and the emotions of the Physcian and Nutrition Support Coordinator in act 2. And finally, we realized the importance of cultural sensitivity and religion in act 3.
It was a delight, truly.