While I'm sure this paper is of great interest to ethicisits, clinicians, and researchers, my primary motivation for blogging about it is the potential for use as a teaching tool. The free availability of the video of the daughters recounting their experiences, emotions, and thoughts is such a compelling portrayal of the emotional and ethical complexities of the case. And you won't lose the forest for the trees. The primary teaching point - that family should be involved in advance care conversations - is made clearly by the daughter in the video.
The story is familiar. A patient is clearly DNR/DNI, and the surrogate decision makers decide otherwise. The ICU team is incensed that her "rights" have been violated. But it's always so much more complex then that...
If I was to teach this case (and I will at the next opportunity), I would write the following story on the board:
- An 83 year old woman with complex medical conditions becomes septic and is seen in the emergency department.
- She has an advance directive that clearly states "Do Not Resuscitate, Do Not Intubate," designating her oldest daughter as her surrogate decision maker. She talked with both daughters about her wishes.
- The doctors ask her daughters for permission to place her on a ventilator
- The patient, very ill and turning grey, says "no-no-no" and wags her finger
- The patient becomes unresponsive, and the daughters grant permission to intubate her and transfer her to the ICU
Then I'd show them the first 4 minutes of the video of the daughter recalling this experience. The first daughter recalls being asked for permission, saying "I didn't have time to think. I thought if they put her on tonight, maybe she'll come off tomorrow." The second daughter says, "I'm glad my sister made the decision to put her on, because my family got a chance, everybody got a chance to see her alive."
At this point, it would be a good idea to get the learners involved. Perhaps by dividing them up into two small groups, and asking one group to defend the emergency medicine physician's decision to intubate, and the other to criticize it. Or having a closed eye vote of how they would have proceeded, where everyone must vote. This strategy usually leads to great discussion because people are forced to put their nickle down.
Then I'd show the video up until the 6:30 minute mark, describing the ICU admission. The second daughter recalls how physicians who had never met her mother tried repeatedly to convince her that they knew what was best for her. All the while, the patient remained intubated on life support.
At this point, I might stop it and talk about how things might have been approached differently up to this point, particularly from the perspective of the ICU team.
Finally, I'd run the video through to the conclusion (only 11 minutes!). The daughter statement that she wishes she had been included in the advance care planning discussions with clinicians is the primary take home message. The appeal for inclusion by the daughter in the context of this familiar and gut-wrenching scenario brings the message home.
I'd want to be sure that the trainees discussed the following issues:
- What are the ideal elements of an advance care planning conversation? Who should be involved?
- Leeway, or the amount of flexibility a patient grants to decision makers to make decisions counter to expressed preferences. How can we ask about leeway? Document it? Would it have helped in this case?What are the competing ethical concerns (patient autonomy, best interests of patient, best interests of family members).
- Are the "rights' of the mother an over-riding ethical concern? How should the family member's interests in wanting to "say goodbye" taken into consideration?
- If you could do it again, how would you discuss this issue with the daughters in the emergency department, in the crunch of the moment? What words would you use? How about in the ICU?
by: Alex Smith
21 comments:
Dear Alex, When I click on the link "video" from your post, it doesn't seem to work, at least with Explorer. Do you have to have a login name and password for the JAGS site?
Thank you
Hi Tom,
The first link is to the article. You have to pay for the article, but the video is free. The video is under the tab that says "supporting information". Or you can click on any of the other links that say "video" in the post and go directly to the video.
Note the video is in a wmv format. This is a microsoft mediaplayer format, should run fine on windows machines. If you have a mac running quicktime, you may need to download flip4mac to play it. Flip4mac is free, just google it.
The authors of the paper ask the question, “…would she have insisted that her children stand by and witness her death without potentially lifesaving treatment if this would impose significant suffering on her children?” One of my first, “incensed” thoughts to this question is “Isn’t that what she was trying to say by wagging her finger??”
My calmer thought: “Do we, as a medical community want to include “perceived family suffering” as an indication for procedures?” After watching the video and hearing that the daughters would have decided differently if presented with the situation again, I’m not really sure that their suffering was spared with the intubation of their mother. I also don’t think that we can say that treatments at the end of a person’s life, whether aimed at aggressive measures for life prolongation or aimed at aggressive comfort measures can change the loss that family members feel after a death. We may be able to change the experience, we may be able to contribute a level of peace and acceptance, but the actual feeling of loss is out of our hands. And is the “perceived suffering” we are trying to alleviate really the family’s or is it our own need to avoid having to see a family’s raw emotions at such a trying time, etc?
There is a statement that I have heard or read, please forgive me as I don’t know who to cite, that talks about what a different experience it would be for the healthcare community to spend the amount of money on bereavement and grief counseling that it is willing to spend on keeping people alive “for the family’s benefit”. I would like to practice in a health care system where patient’s wishes are upheld (especially in cases as clear as this) so that the response to family grief is calling in a grief counselor, not intubating a dying patient. The ED physician comments “...obviously her daughters were not ready to see their mother go…because of the sense of tragedy present, because of the courtesy I believe we owe another human being in that moment of tragedy, because there had to be a sense of closure for the family in that moment, I had to ask the question ‘What should I do now?” Where was the courtesy owed to the dying human being who told you that she did not want intubated? How is dying after 22 days in the ICU any less tragic than dying suddenly in the ED?
I wonder if the intubation was not exactly a response to “perceived family suffering” and a “moment of tragedy” as much as it was a response to “I’m not sure what to do in this situation if I don’t intubate”. For me, a critical teaching point from this paper is that physicians, in an emergency situation, will treat a patient in ways that they are most comfortable – they look into their tool box and pull out what they know how to use skillfully – even if that tool goes against previously stated patient wishes. It is my hope that a physician who knows how to deliver quality comfort care, whether in the ED, admitting a patient on the floor or responding to an emergency situation would be able to answer the question of “What should I do now?” with medicine to alleviate breathlessness, medicine to alleviate pain and agitation and care provided to the patient and family through a team of nurses, social workers, grief counselors, chaplains etc., but not intubation.
So, as you are using this paper and video for teaching purposes of the importance of including family members in conversations, please don’t forget that physicians need to know how to care for patients who do forgo life prolonging measures. It’s a huge step to make sure that patients and families are all on the same page. The step after that is making sure that physicians have the right tools to honor those wishes competently.
Dear Alex,
This case provided me with two experiences, as I first viewed the video and then read the article a few times [Abadir PM, Finucance TE, McNabney. When Doctors and Daughters Disagree: Twenty-Two Days and Two Blinks of an Eye. JAGS 59:2337-2340], which I here mostly relate in that order. (Because of the limitation of 4000 characters, my comment will stretch over three posts.)
I found the video quite informative, especially the two minutes from 7.40 to 9.40. Here, daughter “P” relates how she did NOT trust that her mother understood what the form on the refrigerator door meant. The daughter explained that emergency medical personnel or ambulance people would let her die if her heart stopped. Convinced that her mother did NOT understand this, daughter “P” tore up the form. But this daughter also stated on the video that when she was having a discussion with her mother’s physicians she repeatedly said, “I do not want to hear that… this is my mother.”
As I psychiatrist, I considered several non-exclusive possibilities: Daughter “P” might be difficult to deal with; might not understand how Advance Care Planning can reduce end-of-life suffering; and more than likely was in denial that her mother was very sick and would die someday, probably soon. This seemed enough information to begin asking whether “P” could serve as an adequate agent for the patient. (This image recurs in my mind's eye:a healthcare agent tears up a patient’s Advance Care Planning form!)
After her mother died, daughter “P” stated that the last week of her mother’s life was so plagued by terrible suffering that she would never want anyone to go through that. While “P” did not make the initial decision to intubate (the other daughter did), I learned from the article that she may have been part of the decision-making process that prolonged her mother's dying for 22 days.
Among the lessons to be learned from the video are:
1. Proxies/agents and next-of-kin should be either involved in the “POLST-DNR/DNI conversation” or aware that it took place and given the opportunity to ask questions after they are informed about the patient’s decisions.
2. No one—patient or physician—can always trust proxies/agents when they must make a life-determining question in the moment of crisis; hence there is an important role for clear and specific Living Wills that address the issue of leeway by the patient’s prior expression of preference. This Living Will could say that its instructions should prevail in the event of a conflict. (My colleagues and I have developed the "Natural Dying Living Will," to accomplish this goal.) {end of part one}
3. If a patient is sure about what treatment she does or does not want, she can overcome future sabotage by loving relatives and by well-meaning physicians by stating in her Advance Directive the type of relationship the proxy/agent has with her. The CONTRACT type of relationship is better suited to accomplish this than the COVENANT type of relationship. CONTRACT relationships can state that the agent’s job is to make sure others will faithfully honor the patient’s Known Wishes, which works well with advance directives that clearly state that the patient wants NO leeway.
Note that “P” could have been partially correct about the patient’s understanding at least being incomplete. In his editorial, Daniel J. Brauner, poses a relevant question: “Might the patient have agreed to intubation as a therapeutic trial if she had understood that it might help her and that she would not be left to languish if it did not?” [JAGS 59:2366-2368]. Interesting point. POLST paradigm forms have “limited trials” for tube feeding, but not for the “intubate” part of CPR. (The California POLST simply lists as a standard order “Do Not Intubate” under “Limited Additional Interventions.”
(I disagree with Dr. Brauner’s suggestion to delay such discussions until much later, as this case illustrates family members typically will respond, even for a simpler binary decision, in a crisis. In contrast, a full discussion to attain trust would be include getting the agent to agree to the patient's wish to withdraw ineffective treatment after a certain number of days at most, or sooner if judged futile.
4. Another way to express wishes in a durable way is to record a video that features the patient’s own voice and image as s/he states what treatment s/he DOES or does NOT want, and explains why. (Here is a "demo" example: http://youtu.be/QUCLwbSCmkM ). Optional: add a clinician’s statement that the patient had decisional capacity to refuse this specific treatment when s/he made this recording, and his/her wishes have been consistent over time.
5. The remaining challenge is to find a way that will reliably and rapidly get advance directives and videos in front of emergency physicians and personnel when they must make life-determining decisions. (We are working on technology to accomplish this.)
Now for my experience of reading the article:
For me, the first paragraph of the article raised a flag: “The mother designed her elder daughter as healthcare agent but asked that our discussions not be conveyed to her.” Of course, I had the benefit of hindsight, but I hope I would have asked, “Why? Don’t you realize how important it is for your agent to know your wishes? Why not tell her?” Actually, the mother’s reason is on the next page in the article: “I do not want you to tell my daughters because they would not understand.” For me this raised another flag and series of questions: “Why not? Shall we try to make them understand? Suppose they still cannot understand… do you realize they may not serve you well as your healthcare agent?” My concern here is that in the absence of asking these questions, the mother could incorrectly assume she could trust this physician to make sure that others would honor her wishes. This might seem reasonable to the mother since she had disclosed all this information to him and, aren’t doctors really powerful? To correct this false assumption, I would ask, “Do you realize I cannot make sure your wishes will be honored, even though you told me?” That would create the set up for this key question I would then ask: “Would you consider designating a person other than your daughter, whom you CAN trust to understand and to honor your wishes?” {end of part two}
I was disturbed by the sequence of events: The mother was clear, specific and reportedly consistent in wanting to refuse intubation. She even wagged her finger convincingly. To intubate her right after she became unconscious could be considered battery, a violation of the principle informed consent, disrespectful of her right of self-determination, and at odds with the purpose of advance directive documents, which is to durably preserve patients’ wishes. Such a violation in the U.K. would likely be considered criminal and might even result in the loss of the license to practice medicine.
The final paragraph of the article states, “The final lesson learned is that medical providers should humbly accept the many limitations of advance directives and the inappropriateness of the legalistic model.” This reminds me of a similar limitation noted by Henry Perkins in 2007, in his article, “Controlling Death: The False Promise of Advance Directives,” [Ann Intern Med. 2007;147:51-57]. It is easier and more polite to blame all forms of this type, than: A) to work hard to create better advance directive forms to which strategies are added to make sure that others WILL honor patients’ wishes; B) to train professionals on how to have adequate conversations; and, C) to educate physicians on how to respond to these legal documents in the face of ethical conflicts. The good news is that more states are requiring education about end-of-life issues and ethics. While these issues are complex, these proactive steps are better to prevent unnecessarily prolonged and greater end-of-life suffering than waiting for a lawsuit to inspire malpractice insurance companies to send letters to their physician clients.
Stanley A Terman, PhD, MD
Caring Advocates
DrTerman@gmail.com
800 647 3223
St. Patrick’s Day must have come early this year . . . like 3 days ago, when this video was posted.
How lucky we are! Here are seven reasons why I hope we can find encouragement among the unfortunate and perhaps avoidable missteps that occurred . . .
1) medical professionals cared enough about the family to listen and the family cared enough about others to agree to be videotaped
2) we advocates of ethical EOL care have a shiny new learning curve and research model
3) lawmakers will now have compelling evidence that most Advance Directives are abstruse and feeble documents
4) the advancing GeriPal agenda has already made so many strides forward that we’re ready to acknowledge we don’t know as much as we thought we knew
5) the authors just handed us an inexpensive and practical gift loaded with more potential to benefit society than any current or proposed government funding program
6) the patient and family are African-American, of significance in addressing health care disparities and providing culturally sensitive EOL care
7) when our friends see the vid on Fox and CNN and 20/20, maybe they’ll stop yawning when we talk about how our day went
As a practicing palliative care physician I appreciate the depth of conversation provided here is much appreciated. I am going to utilize this information in presentations I do for interdisciplinary groups. Thanks again.
Patricia A. Schmidt, DO
Alex, thanks for sharing such a great teaching tool addressing ethical issues, sociocultural issues, communication issues, legal issues, and what a good death (or NOT) might look like 9practically half of my Palliative Care class. I have 50 Advanced Practice Nurses in class for two more weeks and will be able to share this real life example with lessons learned.
Our ethics consultation service will be using this as a learning tool - thanks for posting.
Thanks to all for the comments and tweets. Glad people are finding this case stimulating and provocative.
Two more points to add to the conversation:
-Thanks to DieLaughing for bringing up the issue of culture. This brings in an important point - to what extent might cultural values, beliefs, attitudes, and behaviors played into this scenario? This conversation is inevitably speculative, and risks stereotyping. On the other hand, ignoring the profound potential influence of culture on decision-making is a terrible mistake.
-We are sincerely and deeply appreciative of the daughters for agreeing to have their story filmed for teaching purposes. People may have substantive disagreements about the decisions they and the physicians made. As with a good "mortality and morbidity" conference, however, the point is not finger pointing, but learning from this complex, real-world case. Thank you!
ALex,
Please pass on to the family how much we appreciate their willingness to paticipate in the education of all of us.
George
As a hospice professional and a person who has had to guide my own family members through the loss of a sister, this video hit home. The complexities of these discussions were challenging for me as a professional and I found not only did I have to advocate for my sister to receive information about her options I also had to educate the very
I had to educate the staff as well in how to help my family. Most people have limited understanding of basic physiology and disease processes, but if you can help them get a sense of why someone is sick and what is likely to happen next, they can go to the next conversations about what do I want and how should I proceed. You can see in the video that both the
I had to educate the staff as well in how to help my family. Most people have limited understanding of basic physiology and disease processes, but if you can help them get a sense of why someone is sick and what is likely to happen next, they can go to the next conversations about what do I want and how should I proceed. You can see in the video that both the
Both the patient and family make reference to not having the ablility to discuss EOL options and what they really mean. If my personal experience showed me anything, it was how exhausting it was to come to my own understanding and help my sister and family as well. We have to speak truthfully and simply to seek mutual goals of care.
I watch GERIPAL from Spain, and share your points many times.
I would like to invite you to consider the impact of health system architecture and proceedings in this case. In Spain and abroad Europe, Public health system are very powerful, but coexists with private health providers, it is not the same in USA.
I have worked in both sides in Spain, in my place I knew in detail about dealing with health insurance policies for tourist people; now I am in a hospice foundation.
When I see so "strange" behaviours in doctors (I think is very unprobable to consider these doctors as ignorant of law) , like in this case, I wonder about hidden economical benefits for these professionals, would be more profitable to pass through ICU for these doctors? I think it is very probable for the hospital providing this attention , to earn more money using ICU, the bill for insurance company would be higher with ICU than without.
I have seen doctors and other healthcare professionals to work with salary conditions that were rewarding them depending on the bill they could charge for the insurance company.
This is a matter of clinical governance-management issues.
Congratulations about your blog
First of all I want to thank the daughters and authors for this powerful video. As a hospitalist physician this scenario resonated on many levels. One of these does have to do with health system architecture to which Dr. Gomez Garcia refers, and that is that I strongly suspect that neither the emergency room physician nor the ICU team had any prior clinical relationship with this patient or her family. Sub-specialization of the medical profession, peculiarities in physician reimbursement and incentive strategies, and time and geographic constraints have all conspired to further segment health care. Typically a new team of clinicians will care for patients in the outpatient, then inpatient and then nursing facility venues. The model of a primary care physician who will follow a patient through all of these and more settings is rare (and should be highly rewarded if done well). What is then lost is trust and understanding. We, all of us, must strive to maintain communication and openness in our dealings with patients and families.
I do not agree with Dr. Gomez Garcia on one point however; I doubt that economic incentives were anywhere high in the list of motives behind the initiation and maintenance of critical care for this patient. Rather, what could have been another equally disturbing incentive is a concern over litigation. Especially in situations where there are limited prior relationships, we are all highly concerned about angering family and survivors. Reframing the discussion in terms of what the patient desires/would have desired is always the proper approach.
Lou Rubenstein, MD
Reading the article afterward considerably influenced my view on this case. I'm still not sure how well I'll be able to use it as a teaching case, but I'm going to give it a try. I worry that my own emotional response is too strong and that it is also unfair. It was tempered a little by reading the article and spending a bit of time rethinking it. My initial response was very rigid. I felt like the ER doc assaulted this patient (technically, I suppose I should say "battered") and that the daughters placed their own needs above those of their mother. On reflection, I've softened. I still think that the ER doc made a very serious mistake, and is in need of remediation. I wonder if s/he lacked the knowledge necessary to keep the patient comfortable at the end of life and actually respect the very clear advance directive. ER doc still doesn't realize what they did, continuing to argue in the paper that they did the right thing. Asking the daughter for permission to intubate was cruel. It inflicted suffering.
One likes to think that if only *I* was the doc there in the ICU, then this family situation would have gone differently. You hope that you'd manage to achieve a rapport. By focusing on what the family can share about the patient, maybe you'd be able to reframe the discussion. Realistically, this might not have been possible. The daughters seemed genuinely conflicted. There is no doubt that they cared deeply for their mother, and I don't ascribe any blame to them in the end. (I did at the beginning.) However, they never should have been put into this situation in the first place.
How the hell am I supposed to teach this?
I guess the take home is that is very important to involve potential surrogates early in the decision-making process. Additionally, perhaps some discussion on how one might try to keep very strong emotions (anger at the decision made by the family) from interfering with taking care of the patient, as well as the realization that this is MY baggage.
Two teaching sessions with this video so far, and I like it for that purpose. Interesting discussions with considerable audience interaction. So far only with house staff (plus a geriatrics attending and a pharmacist in one session). Tomorrow, I'll be trying it with a small group of third year medical students, as a way to introduce advance directives and why in order to be useful they have to be more than just a piece of paper.
I haven't yet gotten anyone to really defend the actions of the ER doc. This might be because they know (or can guess) my position. I've had to play devil's advocate here, but the most charitable thing I can think to present is that they probably didn't have the tools in their bag to care for someone in end of life respiratory failure without intubating them.
Either the captcha system here is tougher than most places, or I really need an eye exam.
I still continue to use this video for teaching. Today, for IM noon resident conference, I combined it with the Rebecca Sudore piece mentioned here: http://www.geripal.org/2009/10/can-we-agree-to-disagree.html
Emphasized discussion of leeway. This is an idea that is foreign to many of us.
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