Ethics question for grad class

[bigsur]

Hi- I am a mother of a two year old with CF and 4 year old without CF. I am a nurse practitioner student working on an ethics paper about the ER episode when a 17 yr old (considered a minor) is in the ER debating with physicians and his mother about not wanting any life saving procedures - while his mother wants any and all that can be done for him. I am wondering how some of you balance being an advocate for your teen or young adult child with CF yet encourage autonomy as well and what plays into your decisions - moral, culture, religion, how to deal with legal issue of patient rights, etc. Thank you, Kara

 

[Printer]

It seems to me that there is not much of a legal or ethical issue here. Mom is in charge and she is the decision maker. End of story.

Bill

 

[Aboveallislove]

Kara,

A few thoughts: First, there is the legal point (does the parent's word hold no matter what and could the 17 year old go to court and get emancipated?) It would seem you need to know this in deciding how to proceed, because if the later than how it is handled could well determine the "outcome." Then, there is the code of ethics governing the medical professional. If it is from a doctor's perspective or the nurses--both have codes of ethics. I would think they also have "advisory opinions" somewhere (there are for accountants in applying our code) and would also think that somewhere in those codes is a discussion of what role an older child should have in the decisionmaking and how the doctor should discuss with both.

From a personal point of view, I would have to consider our moral and religious beliefs: As a practicsing Catholic, I would need to know more facts. We distinguish between "ordinary" and "extraordinary" care. (I can elaborate or give you links it that would help.) If the former, the lifesaving procedure is morally required and as a parent I would make sure to explain that to our child (who by 17 would be well-versed in theology), have a priest in the discussion, etc., and because both our son's earthly well-being and eternal soul are involved, I would try to bring the child along to the right decision, but if not, I would not risk my soul for his earthly autonomy. If the later (extraordinary), it is not morally required and then I as a parent would have to decide if it was moral for me to go against my 17 year old child's wishes to undergo a procedure that is "extraordinary." Here I'd have to know both my child's mental and maturity stability and also seek out spiritual directions/research because I do not know the thelogical teaching here, but I'd think it would be similar to a health care power of attorney going against the wishes of an "adult" ward, if the 17 year old truly is making a moral, sane, and mature decision to forego. Again, though, only if truly extraordinary; I'd also pray to have the strength then to do what was right.
I'm a university professor (formerly undergrads and now grads), so feel free to send me follow-ups (within whatever honor code provisions allow for outside discussion).

 

[beautifulsoul]

Although you could go to court and go through all that stuff aboveallislove has mentioned, I personally think that's wasting time and wouldn't be worth it in the end. I think 17 years old is old enough to understand everything and know enough to make a decision even though by law your considered a minor. Then again, I've never been through something even similar to the situation. My parents didn't incorporate a great deal of moral, culture, and religious point of views. It was slightly difficult growing up since my parents divorced when I was 4 years old. I still don't think that has effected any of my decisions.

I'm not much help here but I think this is a good topic. I hope you receive more replies. Good luck with Grad school!

 

[bigsur]

Thank you, very insightful. Yes, as a nurse practitioner we have a code of ethics (which is more black/white thinking), but also view it as a balanced relationship with the patient and family - more integrative than paternalistic approach. Came to you all to get some of the "lived experience"...a quality as a nurse we try to strive for is to be holistic in our assessment of the patient and family. It has been interesting doing this soul searching trying to view it from both sides- a nurse and a parent to a young boy with CF.

 

[beautifulsoul]

I agree, I find it very interesting trying to view it from different points of view. It really makes you THINK! That's why this is a good topic.

My mom is also an RN. You are going for a higher degree I believe. Feel free to Private Message me for any type of input you are looking for.

 

[bigsur]

Thank you, yes going for Nurse Practitioner - family focus at Georgetown.

 

[LisaGreene]

It's a tough call and even though Bill thinks it's black and white, it's not. I guess from a purely LEGAL point of view, maybe he is right, the decision is in the mother's hands. But I am not a lawyer and there probably is some gray area there.

But from a moral and ethical point of view, it would be very dependent on the mental state of the child- is depression an issue? VERY common with young people with CF. Has there been a good psychological eval? What is the prognosis? I have known people with CF who have been on death's doorstep and have made it back to live many years and are happy they did so. On the other hand, each person does have the right to choose whether he or she will live or die. We all have the ultimate ability to commit suicide and, as you know, that is the third cause of death in teens after accidents and homicide. So the child's wishes should absolutely be strongly considered by all in the decision-making process.

I would hope that the parents have had this type of honest discussion with their teen many times over the years before this "event" has taken place so that decisions could be made thoughtfully and not in the haste of emotion. I would also hope that parents have had the needed support and counseling over the years to be able to prepare themselves for possibilities like this so that they are acting in their child's best interest and from not their own needs and fears. Not an easy thing to do...

Good luck with your coursework. Important considerations....

 

[Printer]

Whenever I was required to deal with case studies, we were always required to deal with the facts as presented. It would be fun to bring in other thoughts but those would not be part of the case as presented.

As presented, Mom wants to keep him alive, try to get a Judge to overturn that. Son wants to end his life, find an ethical argument for that.

Anything else, based upon my experience, is not part of the case study.

Bill

 

[Aboveallislove]

Bill,

Obviously she didn't type out the entire case study--just a blurb, so there are likely many other facts that she didn't include above. She asked for insight from parents who are/might face a similar issue to help glean some insight to help her formulate ideas on how to approach the communications in an ethical manner, which includes compliance with the governing code of ethics (that she notes above includes consideration of the minor patient). The case study is asking for a discussion of ethics--not law; and notwithstanding your legal judgment, even a legal analsysis wouldn't be black and white: This area of the law is state specific and would involve lots of wishy-washy balancing/reasonableness/maturity/best interest language, which would depend on many facts and assumptions--things a professor would expect a student to note, illustrate and examine. And a judge may well overturn the parents wish depending on what the lifesaving treatment is and the child's maturity, mental state, health condition, etc.

Further, even if the legal issue were clear, since the case-study is on ethics, a (good) medical professional would want to help the patient and the parent communicate. As Lisa said, suicide is always a risk and an ethical medical professional would want to make sure that the communications and decision making process brought the parent and patient closer together and did not put the child at more risk, even if the parents' decision stood at the end of the day. And depending on the facts, it could well be that the parent is not making the best decision and that he/she needs to consider other factors--things a good medical professional can help him/her think through, just like they could help the 17 year old think through.

Surely you wouldn't respond to a graduate-level case study on ethics with your above three sentence and earn an F?

 

[Printer]

Thankfully, I never got a F in Grad School or a D or C. I appreciate your academic background but I could only comment on the facts as presented. It would be fun to hear her Profs final verdict.

Bill

 

[NoelA]

Hats off to you! I am in school from my RN, now, but can't wait to get into grad school. My instructors say "For goodness sakes! Get through this first!"

My family has dealt with an issue close to this, but my cousin was 22. He let his mother (also a nurse) know his wishes from the time that he was old enough to understand those decisions. He had his transplant at 20 and did well for 2 years, but contracted pneumonia and went into septic shock. She (his mother) called me to let me know that they were ending life-support. I screamed and cried and was very mad because, to me, he didn't have a voice. Actually he did. His brother came to see me and we talked about his wishes that he had made when he was 15. She wanted them carried out and, had he been under 18 and chose DNR, I feel that she would have fully supported his will. He was strong in his faith and he was sound of mind, so I truly believe that the decision would have been his. Personally, my daughter is 7 and has CF and if she was 59 I would fight her on a decision like that, but I do not judge people that make other decisions. I'm an admittedly selfish person when it comes to her. I'm working on that one day at a time.
Good luck with your paper and your endeavors. It will surely be worth it!

 

[Hardak]

Keep in mind here we are dealing with the legal stand point that untill 18 you are your parents responsibility, as such they make choices for you. But at what point does the wishes of the young adult need to be considered I think is the ethical question raised. This also gets heavenly into the ethical question of how much is too much. As adults we must feel most of these questions out for our selves but to make these choices for another. Things to be considered are can the chooser separate there emotional state to the individual enough to make that choice. Sure it takes KNOWING somebody to say pull the plug, restart his heart...

 

[DrRoe]

I was emancipated when I was 16 and living on my own. So I found it frustrating when a doc would insist on calling my mom - she used to get ticked at them as well because she knew it was holding up my treatment. Having said that - the ultimate question is probably going to be cased in part on who's being the most realistic in this scenario? Without all the facts its hard to really comment to much. The legal issues are black and white - you must treat unless the patient is emancipated, but even then, a quick phone call by the mother asking the court to give her guardianship wouldn't be unexpected. I am curious as to which ethical framework you are intending to base your discussion on.. (deontology, utilitarianism etc.). I teach a graduate course in bioethics and many of my students start out saying 'its unethical' or 'its ethical' without backing up their point of view from a specific framework or frameworks. By the end of my class I hope that they can argue all sides of most ethical situations we encounter in health care before they conclude whether something is or isn't ethical. Quite a few of them start my courses thinking that just saying something is ethical is a sufficient argument.

 

[Jet]

I think its a great question. The mother is literally in charge but for at most 12 more months. I'm sure that's why the case study has the patients age at 17. Yes the mother can force life saving heroics now but not for much longer. As others have said, the medical professions have to get them to communicate. If they are furtunate enough to leave the hospital this time, the mother will lose control at 18. The patient is going to still need/want their mothers advice and support. The real leasson is we all need to have these conversation earlier and under less stressful situations.

 

[Printer]

Which Mother of a 17yo, who supports his position in this case, because he is old enough to make this life determining decision, would allow him to spend the weekend in a motel with his girlfriend. Just asking.

Bill

 

[Aboveallislove]

Bill,

It depends on the life-saving treatment at issue. It could be entirely moral to decline lifesaving treatment; whereas with your example it never would be.

 

[Printer]

In the case, son was opposed to any (all) life saving procedures. Are you now saying that Mom can decide some of the time and son decides on the balance of the time? Then by who's morals, son or mom?

Bill

 

[Aboveallislove]

Bill,

You asked: "Which Mother of a 17yo, who supports his position in this case, because he is old enough to make this life determining decision, would allow him to spend the weekend in a motel with his girlfriend. Just asking."

I was responding to your "which mother" question (not the case study), as a mother who sees the different in supporting a moral decision (maturally and sanely made) by a 17 year old and supporting an immoral decision. As Dr. Roe notes, though, the "ethical model" matters; I am approaching the question from a natural law/Catholic Social Teaching perspective.

Re your question on the case study: Obviously unless the child is emancipated, as you note Mom legally will be able to decide. But a child, with a good lawyer, could (depending on the circumstances) get emancipated quickly to prevent the decision and forego the procedure. But law to the side, if you are asking my perspective on the moral issue, it is this: if the procedure is extraordinary medical treatment, and the 17 year old is mature and sane, morally, the mother should defer to the 17 year old's decision; if the procedure is ordinary medical treatment, than it is morally required and the mother must approve treatment. As far as "whose morals," I'm using my ethical model (natural law and Catholic Social Teaching) under that model, mom cannot cooperate in sinful conduct, which it would be to agree with an unemanicipated 17 year old to forego ordinary care.

This was actually an interesting ethical question afterall!

 

[just1more]

The case at hand is specific on is it ethical not for mom, or son but the physician to knowingly ignore the desires of a 17yr old patient and obey the mother.

Legally the answer is clear, mom wins, unless the child has the means to request a judge the ability to speak for himself.

Morally and ethically is much murkier, thus the case study. Does at 17yr old have enough of a grasp of death to know what they are chosing--likely yes. Does a 17yr old have feelings that should be at least as valuable as the mothers--likely yes. If the 17yr old is done fighting, and ready to go; should a parent be able to force their own unwillingness to let go on the child--not a decision I would want to make as the physician.

Reality is, a 17yr old that makes that decision is in one of several places: 1) truly accepting of death and ready to be at peace, 2) depressed and/or scared and wanting to escape, 3) merely oppositional to the parent and wanting to exert independence or 4) beats me

If the Dr believes it to be 2 or 3 they have an ethical obligation to help the patient try to chose the right path, and follow the mother if the patient fights. However, I firmly believe if the case is clearly #1; then I don't care the age at some point the patient's desires must trump anyone else for THEY and they alone must live or die.