Dr. David Seres
By David Seres on behalf of A.S.P.E.N.’s International Clinical Ethics Section
The following was inspired by a case on which I was consulted. While the details have been significantly changed for the sake of both stimulating a discussion and disguising the patient, the primary ethical dilemmas and the solution we reached (which will be revealed in a subsequent post), remain unchanged.
A consultation is requested of the nutrition support service for TPN for a 42-year-old woman. She has been battling metastatic cancer of the biliary tract for four years. So far she has been winning this battle; her initial prognosis was only three to six months. She has undergone several major surgeries and, in addition to aggressive standard of care chemotherapy, several courses of investigational and complementary medical therapies. Now she is severely cachectic and unable to eat, with symptoms suggestive of gastric emptying delay. She has ascites, very low muscle mass and albumin, and pneumonia, but is not septic. She has a moderate coagulopathy and has been having nose bleeds. She has a functioning dual lumen infusion port. Everyone agrees her remaining life expectancy is measured in days to weeks.
The patient is self-made. She built and ran a large company that started out of her garage while she raised two children alone. She is now extremely wealthy and has used her money in generous and socially responsible ways. The patient is someone used to having her way and having control over her life and her “staff”, which you are now part of, with the snap of her fingers. She is a very large donor to your hospital and frequently socializes with members of the C-Suite and Board of Trustees. Most recently she had started to discuss the possibility of a large legacy donation to endow a cancer research program.
Photo by Omer Unlu via Flickr Creative Commons.
She knows she has cancer, makes no bones about that, but is absolutely unwilling to discuss prognosis, especially if it is bad news. In fact, her boyfriend and sister, whom the patient has instructed everyone to heed, meet everyone beforehand with strict instructions not to mention death, palliative care, DNR, or even possible complications. They produce a document signed by the patient confirming this. She only wants to discuss things that will extend her life, which is her primary goal regardless of cost or discomfort. The patient asks every consultant whether they have read and understand the document before being allowed to start a consultation.
The Nutrition Support Team evaluates the patient and deems the appropriate intervention to be a discussion of the futility of nutrition support. This is a patient for whom artificial nourishment, either enteral or parenteral, is unlikely to meet her stated goals of prolonging her life. In fact, it is more likely that either, but especially parenteral, will shorten it. They feel strongly that they do not want to do something that is so contrary to her stated goals of care.
You enter the case as an ethics consultant after receiving a call from Patient Services. They have received complaints from the family about the insistence of the team that they allow discussion of prognosis. They further complained that the “intransigent and irrational” Nutrition Support Team is refusing her request for feeding. You attempt to discuss this with the patient’s boyfriend and sister. They tell you that anything that even symbolizes futility is horribly distressing to the patient. Her greatest discomfort currently, over and above any symptom or physical pain, is the emotional distress she is feeling about not being fed. She is obsessed with this, talks about it constantly, cries about it, and begs for TPN.
Questions for discussion:
1) What would you do to resolve the situation?
2) What ethical principles are in conflict?
3) What are the nonethical confounders to finding a solution?
4) How can a compromise be found?
5) What compromise can you suggest?
6) What, if anything, could have been done to prevent this ethical dilemma?
Lend your voice to the discussion by leaving a comment below. Do you have a clinical case study involving ethics that you’d like to see explored in Food for Thought? Email Jennifer Kuhn to make suggestions for future topics.
Dr. Seres, thank you for your thought provoking clinical ethics case study and the questions to help facilitate discussion. It appears that the clinicians are dealing with the “elephant in the room” for these controversial issues, which will be addressed in the October 2013 issue of Nutrition in Clinical Practice article entitled Integrating Patient-centered Care and Clinical Ethics Into Nutrition Practice. Also, a Podcast will be available soon about the article, through the NCP home page http://ncp.sagepub.com/
Based on the case study, it does seem that the patient had discussed her healthcare wishes for this period in her life, possibly over the years, with her family/surrogate decision-maker, and maybe her physician. Yet, it is not known if this discussion occurred before her illness/cancer diagnosis or at what point during the illness, when she might have been more receptive to realistic discussions about options, risks/benefits, and possible scenarios. The patient does appear to have an advance directive, including designated surrogate decision-makers, for when she might not be able to make her own healthcare decisions. It is apparent that the patient feels she has prepared and planned appropriately for this period of her illness, but healthcare professionals would disagree.
The physician utilizing shared decision-making, with the patient for healthcare treatment options, would be the most optimum for patient-centered care. This will be difficult to achieve, when the patient does not want to discuss choices, based on risks and benefits of these medical therapies. Sometimes a patient may bond with other healthcare clinicians, involved in their care in the hospital, such as a particular nurse, dietitian, clinical social worker, case manager, or other healthcare team members, including the chaplain, who are sensitive to the ethics issues outlined in the case study. Through these clinician’s interaction with the patient, in their areas of expertise, they may be provided with insight from the patient/family/surrogate decision-maker about previously unspoken concerns. This information would then be communicated to the other healthcare team members and also during the interprofessional patient care unit rounds.
A palliative care consult would have added greatly to the discussion with the patient about goals of care, not focusing on end-of-life, but options. Yet the patient was not receptive to this helpful interaction/communication with palliative care team members, who have dealt with sensitive ethical issues with many other patients. Their expertise might have helped this patient navigate a very difficult time in her life.
Another major issue will occur when the patient, due to her deteriorating clinical status, may no longer be able to express her wishes and have the ability to change her mind, about continuing life-sustaining medical therapies. Her surrogate decision-makers will be left with her directive about “do everything”. Due to the patient’s inability to discuss her future options of healthcare, she has no idea what this term means in the healthcare setting. In this clinical ethics case, life-sustaining medical therapies, including nutrition support, can result in the prolonging of the dying process, rather than extending life in an acceptable state for the patient.
I look forward to your future comments, about how the case continued to unfold and the ultimate outcome, as well as other clinician’s thoughts on these ethical dilemma issues.
Denise Baird Schwartz, MS, RD, FADA, CNSC
Chair International Clinical Ethics Section (ICES) of A.S.P.E.N.
Thanks, Denise. I’m looking forward to how others out there view the case, and will provide follow up and a discussion of the ethical principles at work after others have commented..
I totally agree with Denise’s comments. The situation may become even worse when the patient is no longer able to communicate her wishes and the therapy becomes so painful that she may want to rethink her original decisions. It appears, however, that the patient left the HCP without any other choice than follow her direct instructions. Expressed opinion, remain, after all, the key directive to provide an ethical health support.
Although we know that parenteral nutrition support is futile, it seems apparent that quaility of life issues for this patient includes the use of parenteral nutrition support. Is it ethical to deny her a therapy that would provide her peace of mind in the last few days of her life? If she knows the risks and benefits associated with that therapy, but still wants it so much that she is begging for it, isn’t it increasing her suffering to deny it to her? Is it not reasonable to care for the emotional well-being of patients as well as their medical well-being?
Thanks for your comments. A few points to further the discussion.
First, the patient is NOT, and refuses to be, informed of risks and benefits. Further, the patient’s passionate desire to stay alive longer is, I believe, in direct conflict with their desire for TPN, which is not only futile, but is also more likely than not to hasten the patient’s demise. This is the ethical bind.
I’ll let you all know how this was resolved in an upcoming post. But meanwhile, please continue to comment.
I would let her have the PN because she wants it, she can afford it. If the patient wanted a steak dinner with fresh crab flown in from Alaska we would let her have it and who cares it it won’t add to her longevity or that it will hasten her death because of the stress on the liver. The stress of not getting the nutrition the patient wants is detrimental. This case is different because it is not a doctor pushing for PN or a family member pushing for PN. The patient should have the big vote in this case.
I don’t agree. Patients want lots of things; some of those being inappropriate. Just because a patient wants something (what if it was narcotics? Antibiotics (that weren’t necessary)? Surgery?) does not mean it should be given to them. It’s hard also to assume that “she could afford it.” If the patient is not paying out of pocket for the treatment she’s receiving, then insurance would technically be billed and that, besides being a whole other ball of wax, would bring up other issues….
Very interesting case from Dr. Seres. I think the ethical dilemma is the (correct in my opinion) position of the team that PN is futile in this case, versus the patient wanting to be fed if for no other reason than to ease her anxiety at this stage in her disease. Easing her anxiety can be consistent with improving her (remaining) quality of life. Both positions can be viewed as “right” positions pitting two rights against each other..
I think the discussion would be easier to have with the patient if it was not titled or couched as the “futility of nutrition support.” This reveals the team bias or position before the discussion begins. The role of the NS clinician is to present potential outcomes, risks and benefits of nutrition support, but not to make the decision.for or against. Self determination is the overriding principle that guides health care decision making in the United States. If the service feels strongly that the risks out weight the benefits, they can excuse themselves from the case. But as long as the patient is of sound mind or her appointed proxy is of sound mind, it is their decision once the team has met with the patient and/or her proxies.. In this case money is probably not a concern. It should never be a concern, but unfortunately it might be with a Medicare or Medicaid patient. .
Thanks, Dr. Mueller. Excellent points.
Most importantly for me, you raise the issue of whether patient autonomy is positioned higher on the hierarchy than medical decision-making.
I would respectfully suggest that the role of the clinician (any clinician) is broader than you have suggested: to present potential outcomes, risks and benefits, but not to make the decision.for or against. While I agree that the final decision belongs with the patient or surrogate, I feel strongly that as a result of our excessive concern for autonomy, we clinicians have abrogated our responsibility to guide and to have opinions. One of the unintended consequences is that we leave patients and surrogates with the huge burdon of making decisions about things they have no context for understanding, and all of the guilt and emotional stress that follows, without any indication from us as to whether we would have supported the decion. Further, we then avoid saying the three most important words for patients to hear in this setting: “I don’t know”.
I advocate that yes, we provide our list of risks, benefits, and alternatives, but would add that we all consider adding a bit of advice as well, while continuing to monitor our own behavior lest it become too patriarchal.
For me, the inability to enter into this dialogue with this patient was the most difficult part of the case.
I’m also glad you mention the patient’s financial means. It gives me an opportunity to divulge one of the outcomes. While we all were concerned about the financial impact to the hospital of angering the family by not doing as they requested, we all gathered to support each other in discarding this as any part of our decision-making. Identifying it as a confounder and concern was critical to being able to move past it.
But what if the patient was fabulously wealthy, and the family’s decision was whether to fund a medical or public health program that would save 10’s of thousands of lives vs giving the money to, say, a cult? Would social justice play a bigger role in our decision making?
I have seen this before. If the patient cannot eat and is not a candidate for a feeding tube because of the ascities then PN may be appropriate. Is she dying because of her malnutrition or her underlying cancer. Nobody truley know how much time she has left. We had a patient leave Hospice care to go on HPN and survived over a year. She was able to see her son married which was her goal. The patient has a choice to pursue treatment. I would provide the PN therapy. It can always be stopped. These cases have a way of working out regardless of our own opinions.
Thank you. Very interesting discussion and points made by all. This a great learning experience and I look forward to the resolution.
Very interesting case and discussion! While I consider myself a “novice” on ethics in nutrition and medicine, in my opinion, I think that the option of PN should have been presented just as that, as a means of providing nutrition when it can not be provided orally with diet, or enterally, versus spinning PN as being “futile”, as the Patient may have been more receptive and willing to discuss benefits/risks of PN had it been presented in a straightforward, nonjudgemental, objective way without one’s own prejudices/beliefs/values about PN. Some times you need to put your own “ego”, your own “needs” aside, to be able to better engage the Patient and have a more honest, open discussion, particularly when you have a Patient like this who is very resistant and seems to have a “controlling”, “Type A” personality at baseline. This is not to say that we, clinicians should not express our own opionions to Patients even if we don’t know the answers, but that we need to modify our responses and actions at times to be more in line with where the Pt is at in terms of their beliefs and values, and somehow “come together” and try to find some common ground in making decisions. As this Patient is not “fully informed” of risks and benefits of PN, can we say that she is fully autonomous?? I agree on the one hand that Patients should have the right to services and treatments of their choice, but as clinicians, we are also responsible for them, responsible to the Hospital, to the Insurance company(s), and can we ethically provide, allow a treatment like PN with some knowledge that it might indeed be futile and not really benefit Patient? I think the key is communicating with the Patient and trying to find some common ground, documenting, documenting, documenting that you have made multiple attempts to speak with Patient about risks/benefits, and/or that you actually were able to have discussion with Patient, and that Patient still pushing for PN. I am a Clinical Dietitian, so I do not order PN for Patients, so I’ll never be in a position where I’ll have to make that decision, however, I will speak with Patients and communicate to the Team as much as possible what the Patient is feeling, thinking, and what direction Patient may be heading in, when a decision is being made regarding Nutrition Support.
Great comments, all. Please keep in mind that the patient has set up three impenetrable roadblocks to even getting to the point that we could have an “open discussion”: her boyfriend, her sister, and the document you agreed to before seeing her, which forbids an open discussion. So another point to make: By setting up these roadblocks, has the patient discharged their right to informed consent?
I once had a physician state at an acute care facility when we were having an issue with numerous inappropriate TPN’S “this isn’t Burger King – it’s not have it your way.” I would describe myself as an ethical novice, but I don’t believe our personal opinions should ever have a role in this type of decision. What I believe as an individual I don’t think is pertinent. I do have a question though. If as a professional we know that parenteral nutrition would be futile and the patient/family/caregiver are not aware of the existence of the therapy are we ethically bound to disclose the therapy exists? Thank you for the response in advance.
Dr. Seres before you reveal the outcome of this case, would you provide input on how this clinical ethics case study may have resulted in changes in your institution’s policies or procedures to prevent future issues of this nature?
First, let me address Rita’s comments. I agree that my personal beliefs and morality should never be involved in the patient’s decision-making, and I should, in fact, resign from the case if I cannot separate them from my medical decision making. But I also believe that the whole purpose of a professional education is to be able to assess a situation and provide a professional opinion as to what the most efficacious path might be. I’m sure that’s the distinction Rita was drawing. I feel (please note my careful selection of verbs that indicate that this is all opinion: agree, believe, feel) strongly, however. that in these difficult and unclear situations, we still owe our patients our professional opinions, even an answer to “what would you do in this situation”, and that we’ve been using our respect for autonomy and fear of patriarchal medical practice as excuses to avoid committing ourselves for fear of being wrong. But enough on that soapbox.
As to your second question, no, I do not believe we have any ethical or moral obligation to offer any therapy we believe to be futile. Where this gets muddy is in states like New York that have had laws on the books prohibiting non-feeding (without advance directives or patient agreement) based solely on futility. It may be debatable whether TPN, which is a complex medical therapy, would be covered under the law in the event enteral nourishment was not possible. But because it is ‘debatable” it is likely there are those who do not distinguish EN from PN. Also, please keep in mind that the dilemma here was not that TPN was futile. It was that we believed the TPN more likely to cause harm and hasten her death, which was in conflict with her stated goals.
To Denise’s question, let me say that we are very fortunate to have a wonderful system for bringing such dilemmas to our colleagues for assistance. We maintain a culture of collaboration where the patient’s attendings are all on speed dial on my cell phone. As the nutrition support consultant in the actual case, this was my first call before even considering whether to try to make a decision or interact with the family. And if there was disagreement or the inability for the two of us to find a way to solve the issue, a call to the Director of our Ethics Service, for either informal or formal consultation, would be next.
To your excellent question about prevention, and for those of you who don’t know Denise she has been an avid and tireless advocate for this kind of thinking, I am personally at a loss as to how these kinds of situations might be fully prevented, as not every conflicting medical option can always be anticipated. I think it particularly true in a tertiary care setting. If we didn’t occasionally act heroic for hopeless cases, people would not consider us a tertiary care center. We are constantly educating our colleagues and trainees, developing policies, having open discussions about these issues, and trying to insure the discussions are held preemptively with the patients.
In New York State, a recently passed law (PHL Section 2997-d http://www.health.ny.gov/regulations/public_health_law/section/2997d/index.htm) now requires that all patients with a life expectancy of less than or equal to 6 months be made aware of the availability of Palliative Care. This should also help greatly, as our colleagues in Palliative Care are so attuned to these issues. I recommend Palliative Care consultation for any patient with chronic illness, particularly if it is symptomatic and/or potentially fatal, and well in advance of the approach of death. Palliative Care has, in fact, been shown to prolong life in patients with incurable lung cancer.
Fascinating and all too real case. If PN is given for the patient’s peace of mind and spiritual comfort, is that not palliative care? You cannot change the course of her disease, but you can make her more comfortable (even if the therapy results in the untoward effect of her demise). Is it not like aggressive pain management that stops respirations? Is something described as futile because it does not meet medical standards or because it does not meet patient wishes or desired outcomes. Not wanting to talk about a bad prognosis is not equivalent to being ignorant of our fate. We all want to face death on our own terms….we don’t always get that.
Great to see ASPEN having this dialogue; it is essential for practicing professionals. It is Friday night and I need to write quickly but love the topic. I understand medically that there is probably ” futility of nutrition support”. She has also had “several courses of investigational and complementary medical therapies” that may have been medically futile for her. If the boyfriend/sister know the risk of TPN, and if all the associated charges for TPN are calculated, what is the harm of meeting psychological needs? I understand her feeling of abandonment. If she could eat, we would feed her and not say futile to have her eat. I think deciding futile only from a medical perspective is too narrow a perspective. She is not wasting valuable health care resources, she is spending her own money and should be able to do so, with her surrogates knowing the risk.. You mentioned tube feeding as lower risk, can you try that first ? Or can you transfer to another facility that will meet her needs? Look forward to the outcome. Julie
First of all I want to commend Denise and David for initiating the dialogue and the other commentators for their collegial contributions. My opinion is a follows:
1.The term “futile” should be deleted from our vocabulary since it is a term with variable meaning depending on the individuals perspective and circumstances. I prefer the term “low yield therapy” as previously recommended by the EPEC program (Education for Physicians on End of life Care).
2.Autonomy for a decisionally capable individual/surrogate trumps all other ethical tenets, unless in an extreme case such autonomy would harm large groups of individuals..
3.As professionals we are ethically bound to offer/provide interventions which we feel will be beneficial to our patients.
4.Alternatively, we are also ethically bound not to provide interventions that we feel are harmful to the patient
5.The autonomy principle applies as well to the providers of care, so if the situation arises that the provision of a therapy is totally contrary to their clinical judgment, value system and/or persona, they should do everything possible to transfer care without abandoning the patient.
6. In this case, when the team is being asked to “swim with handcuffs and shackles” the question would be whether the providers be comfortable with proceeding with TPN, if indeed there are no other alternatives to oral or tube feedings
7. A potential compromise to be considered is to discuss with the surrogate decision makers that a time-limited trial of the intervention (TPN) will be undertaken with the proviso that the team will evaluate the efficacy of the intervention and if deemed harmful, withdrawn without further discussion.
I look forward to other comments and the final outcome which I would submit that if arrived with the careful deliberations offered by Dr. Seres and his team was the right decision as are those that involve all stakeholders in an ever increasing patient-family centered healthcare delivery system.
I really apprecaite the case presentation and discussionon on this issue. I direct an education program for nurses in palliative care, the End of Life Nursing Education Consortium (ELNEC) which has provided palliative care for nurses and other professionals around the world and across the US.(www.aacn.nche.edu/elnec) . Issues of food and hydration are among the most common dilemmas. I agree with the important comments that have been made. It is very difficult to balance respect for the person and family, the tremendous emotional issues associated with nutrition at the end of life and yet what we as professionals often recognize as the delicate balance between benefit and harm.
I also an editor of the Journal of Hospice and Palliative Nursing and we have started a new Ethics series in the journal so we welcome any contributions on this topic. One of the clear messages to me from this case is that it is vital to have all disciplines working together to support patients and families in these concerns.
Betty Ferrell PhD, FAAN, FPCN
City of Hope Medical Center
“Nothing about me, without me” – One of my lasting memories of working with the Institute for Healthcare Improvement and Dr. Donald Berwick. This strikes me as an excellent example of one of the “Six Aims for the 21st-Century Health Care System suggested by the Institute of Medicine in Crossing the Quality Chasm: Patient-centered – providing care that is respectful of and responsive to individual preferences, needs, and values and ensuring that patient values guide all decisions.”
If we adopt this suggested aim, perhaps informed patient preferences trump informed clinical judgement of clinicians in this type of case.