Josephine was not acting like herself. She wasn’t eating; she
seemed constipated. She was lurking in dark corners and not interacting with
her family. Usually, Josephine was quite friendly and warmed up to strangers
in seconds. She had a hearty appetite and loved to play. Her friends had
noticed these changes, but didn’t think much of it. After all, she had been
declining very slowly – probably over the span of a few weeks.
Worried, a friend made a doctor’s appointment for Josephine on
Friday. However, on Thursday, Josephine seemed to be bouncing back to her
normal self. The friend canceled Friday appointment, as Josephine seemed to
be doing just fine.
Friday afternoon, Josephine’s friend noticed a sharp decline.
The friend called the doctor’s office to reschedule the appointment and took
Josephine in Saturday afternoon.
The doctor took one look at Josephine. The diagnosis: complete
liver failure with almost no chance of recovery or the ability to ever again
have a decent quality-of-life. She was whisked away in an ambulance to the
ICU at the local hospital and hooked up to IVs and machines.
What does the friend, who has health care proxy, do? Josephine
does not have a DNR.
Rachel
I also agree with all your comments but especially resonate with Boo’s statement that the health care proxy was given to a trusted friend. While it is difficult to make those decisions, hopefully all the conversations that took place in the past will strengthen the friend to do what is in the best interst of Josephine.
Useful info, nice blog, thanks.
I also agree with Boo. Josephine trusted her friend to make her medical decisions. Her friend now must advocate on her behalf and proceed with her wishes, independent of her own.
Dtto to Boos comments. After reading all of the comments, I feel that Boos comments bring home the subject matter clearly for me.
To build on the last comment, the health care proxy was established because this is a person Josephine trusts to make decisions about her health when she is unable to do so. The time has come. The friend must now consult all resources to make the decision — and if she feels that Josephine will never again have a “decent quality-of-life” then she can discontinue medical intervention and spare her friend what has been described as a miserable situation.
Years ago I read some research on health care proxy decisions. In the research an individual was given a health/end-of-life scenario and asked to make a decision for themselves. Then their health case proxy was given the same scenario and asked to make a decision for them. Lastly, the decision of the proxy was shared with the individual. In all of the cases in which the individuals decision was different than that of the proxy, the individual stated they would agree with their proxy’s decision over their own, because they trusted the proxy to make the best decision for them at end of life. I use this research to guide proxy when they are feeling unsure of what to do.
Might I throw in a wrench? Let’s say Josephine is not able to communicate orally…
Most thoughts I had on reading this scenario have already been said – and much confusion remains for me about why the situation exists as it does, and most importantly what the friend and proxy does or does not know about Josephine’s own wishes. It certainly highlights the importance of good advance communication between individuals at the time a relationship of surrogate decision-making is being legally established. So – I am hopeful the friend knows something about Josephine’s end-of-life care preferences (beyond simply the lack of a DNR, which does not affirmatively indicate anything specific) and believe she should act in accord with those wishes. If she does not have this information, then in her shoes, I would seek the advice of professionals at the hospital who could help with the decision-making process – social services, Josephine’s physicians, chaplains, potentially the ethics committee.
I would have to agree with the majority of comments already made. I would further look into finding out what Josephine’s wishes are if the friend isn’t already aware of them. It is extremely difficult if those wishes were not made clear. No matter what the decision the friend will have to be able to live with it.
Stacey
This will sound strange, I’m sure, but the description of Josephine in Rachel’s first paragraph – lurking in dark corners, not interacting with family, used to have hearty appetitite, loved to play, quite friendly, warmed up to strangers in seconds – sounded just like our beloved family dog, when dementia took hold at age 17! The characterization was so similar, I was truly expecting a twist at the end – until I got to the ambulance/ICU part.
Now that I’ve come to terms with the notion that this is, indeed, a human, I’m left wondering how old Josephine is. Is she young, does she have special needs – and is that why a medical proxy was established? As several have already asked, why was a friend made the proxy, if Josephine had been interacting with her family until a few weeks ago? Was there no DNR because Josephine’s wishes were to pursue every medical treatment available, or was the subject just not addressed?
I agree with the majority to date – if there was conversation enough to establish a proxy relationship, some discussion of Josephine’s wishes should have ensued. It makes me wonder if there is more to the medical proxy than is provided. It sounds odd that a friend would make, then cancel, a doctor visit on Josephine’s behalf. Is this a person with special needs and family “issues” that required some sort of intervention and an appointment of a proxy?
CC, I thought the questions you asked were very good – BUT can’t help but to point out the question of how old she is… would that be a relevant fact to know?
Corrections to previous comment: I agree that Josephine’s friend should make decisions based on what Josephine might want, and feel confident in her decisions.
I tend to think that living wills complicate end of decision-making when someone has also designated a health care decision-maker. With growing number of possible medical interventions, it is next to impossible to list all of the possibilities in a living will. I feel that you can have conversations about your choices with a trusted friend or family member whom you feel could best represent your wishes, and designate that person as your health care decision
I agree that Josephine should make decisions based on what her friend might want, and feel confident in her decisions.
I tend to think that living wills complicate end of decision-making when someone has also designated a health care decision-maker. With growing number of possible medical interventions, it is next to impossible to list all of the possibilities in a living will. I feel that you can have conversations about your choices with a trusted friend or family member whom you feel could best represent your wishes, and designate that person as your health care decision-maker.
I wondered why Josephine was lurking in dark oorners and if that was indicative of typical or atypical behavior for Josephine and perhaps a non verbal flag that something was amiss. The immediate situation, however, has to do with the existing health care proxy and Josephine’s wishes or inclinations prior to this end of life event. I agree that a discussion with the family may be warranted. Clearly the friend vs. family had the health care proxy for a reason but it may be helpful to prepare the family for actions that the friend is obliged to take or get guidance from the family if Josephine’s wishes were not clear.
Like many of my fellow students I fell that we don’t have enough information to make a clear descision as to what to do. It is not clear that Josephine is completely unable to communicate.If that is the case, I would suggest that the family be contacted. Her friend, health care proxy, and the family can discuss this together. It’s possible that the group as a whole can come to some conclusions as to what they think Jospehine may want.Perhaps,at some point one of them have had some serious converstaions with Jospehine about such possibilities. Getting input from the family is imperative, especially if they friend is unltimately making final descisions. The approval of the family will help the friend deal with the emotions that come from making such difficult choices.
This case makes me wonder what the standard operating procedure is for folks whose relatives and/or health care proxies are unable to provide their input. Perhaps this is a well established procedure that I’m unaware of, but it occurs to me that there’s a larger question about end of life care absent any specific directive that’s worth considering. Is it the case, as Dr. Thomas describes, that hospitals have their own procedures regarding end of life care, or is there (or should there be) a more universal moral standard for either extending or choosing not to extend life in scenarios such as the one described above?
As they say, not enough information. This happend all too quickly and hind sight is 20/20.
Depending on the family interaction, they need to be brought into the conversation and consulted. It is also interestng that Josephine thought to have a health care proxy and not a living will or DNR unless her wishes were that explicit in the proxy to provide guideness to her friend. I will assume that Josephine must have known something could go wrong with her health. I would hope the family has the missing information. The Proxy must follow her friend,s stated wishes even if the proxy disagrees. I’d hope she, the freind, knew what she was getting herself into before agreeing to be the proxy. Get help or advise from the hospital, the doctor and family and comply with the proxy. You opted to be a close friend who was trusted, so trust your instincts and friend’s wishes.
To add to Lynette, the case gives little information as to what Josephine would prefer. The fact that she was “lurking in dark corners” suggests some level of depression. That she was not communicating with her family seems somewhat consistent with having a friend serve as her health care proxy. The lack of a DNR cannot be interpreted beyond the absence of a document that communicates her intention to be recussicated. If I were the friend, I would take the time to describe my relationship with Josephine over time, and with as much detail as possible about anything that Josehpine said, did, or owned, that was relevant. I would then discuss my findings with an experienced health care professional to determine if anything emerges from this process that can give me guidance. Then, having given myself every opportunity to prepare to act in accordance with Josephine’s wishes, I would take the actions I thought were appropriate.
Tom
If the friend is the health care proxy, I hope that she had a prior discussion with Josephine regarding how she wanted to live and how she wanted to die. This conversation, although potentially difficult, is essential at the time of establishing a health care proxy. Absent that discussion, the friend needs to have a long conversation with herself – putting aside her own biases, she needs to ask herself what Josephine would want. She needs to proceed, with confidence, to have those wishes honored.
Lynette