This blogger raises some excellent points. When presented with an ethical dilemma, how do you feel the best response is for health care providers? (Both from the provider and patient point of views?) I'm reposting the original post below, for those who do not have access to medscape.com.
One of my favorite aspects of being an obgyn is the opportunity to interact with a diverse array of women at critical points in their life, and to provide the best guidance and help that we can offer. While it is a privilege, and a feature of my job that I value, it certainly is not without its challenges.
I work in a busy county hospital that sees a wide range of women from all different cultures, socioeconomic backgrounds, and values that can vary markedly from my own. Working here has presented some amazing learning opportunities, but also challenges in how to negotiate care with patients from vary different circumstances and belief systems than my own.
One of these cases occurred on call last night, and I am still thinking about this patient, and what, if anything, we could have done differently.
This was her fourth pregnancy, with three term vaginal deliveries, and she was now in her 26th week with a desired pregnancy by her period and a first trimester ultrasound. The patient is the full time caretaker for an elderly parent and her three small children. She was seen for her routine anatomy scan yesterday afternoon, and noted to have hourglassing membranes. On Labor and Delivery we confirmed a viable fetus, breech, with a bulging bag of water and a cervix visually dilated to 2-3 cm. Due to concerns about her responsibilites for her family, the woman refused inpatient admission although she does desire full resuscitation should she go into labor. We spent hours negotiating with her, and offered a variety of resources to assist her. She agreed to outpatient bedrest (although with three small children, none of us were confident of that) and outpatient betamethasone. She then left against medical advice.
The case left all involved feeling conflicted. As women's health providers, all of us wished to preserve the patient's autonomy, and she was clearly competent to make her own decisions, but none of us felt good about sending a 26 week fetus, footling breech in a multip with advanced dilation out the door.
When you are caring for a patient with different values/circumstances than yours, how do you reconcile your feelings so that medical care is not affected?
Written by:
Maria Rodriguez, MD, Ob/Gyn & Women's Health, 04:11PM Dec 30, 2009
31 comments:
I don't know enough medically to assess this situation... but the ethical question is interesting. The doctors and nurses really have TWO patients here - the mother and the baby. If the mother is doing something (or not doing something) that endangered the health of the baby (a baby past the age of viability, no less) it seems like there should be legal recourse to step in and mandate whatever actions necessary to save/protect the baby.
I can appreciate where this woman is coming from, having small children and an elderly parent to care for. BUT she also has a tremendous responsibility towards her unborn child... who would arguably be at greater risk if she neglects bedrest than her children would be if she agreed to bedrest. (Although it may be logistically difficult, others could care for her children and mother - no one else can care for her unborn child.)
So where is the line drawn? At what point do doctors have an obligation to there littlest patient over the comfort and desires of their bigger patient? At what point can the state step in? At what point is it child abuse/neglect for a mother to go against her doctor's orders?
I don't have the answers. They are hard questions. Personally, I would always err on the side of the most vulnerable person involved - the unborn child. But that's just my opinion based on my own belief system...
Thanks for sharing this interesting post!
I wonder if the mother truly didn't understand how probable it is that she will lose her baby. Was she given "worst case" senarios? A visit to the NICU might have helped her understand.
I ignorantly asked my OB if I could go home after being put on mag. overnight (bp 168/100+), because I thought since my bp had come down I should go home. He was surprised, but didn't explain that it would be in my best interest to stay.
It's a tough line to walk of course.
If she is competent to make medical decisions, then it is her right to make whatever INFORMED decision she wants and then live with the consequences.
The sticky part is "informed." You never really know if a patient fully understands the consequences and has a mindset that takes into account that those consequences could happen to HER.
I appreciate when medical providers are willing to think outside of the box to solve a family's problem. I was admitted to Antepartum in preterm labor at 23wks with my 15 month old baby along in a stroller at the appointment, my husband out of town, no family able to be reached by phone, no offers of help from the nursing staff (who were very annoyed by the situation on their busy unit.) That put me in an impossible situation, made worse by the anxiety of my pregnancy complications. I'm sure I looked non-compliant but I had a sobbing child right in front of me while trying to be told to lay still for the unseen child I was carrying- should I care for the baby in the stroller or the one in my uterus? For a devoted mother, it's not a choice anyone could make. I couldn't see any options except to go home against medical advice unless they were willing to find a sitter for me right there & then.
The best option would be prepare a mother for realistic solutions to bedrest or hospitalization. Identify local services, food & prescription deliveries, low cost hired help, home health agencies, etc. My docs had NOTHING to offer, they simply threw up their hands, suggested I ask a church (I didn't have one). How was I supposed to get groceries, change diapers, load my toddler into his car seat? My husband was fired from his job because of my bedrest and were broke in a month, each visit to L&D came with a copay of $100 demanded rudely by financial staff in my hospital room (we made just a little too much for assistance) yet nurses & docs said they had couldn't help us financial arrangements with the hospital, we should just go into debt and take care of it later. Tell that to the bill collectors on my doorstep! I stayed 24hrs to get the steroid shots then I was supposed to return for twice weekly visits that required a 1 hr drive each way and 3-4 hrs of monitoring, yet they didn't want me sitting up for more than 15 minutes?!
Yes, I didn't comply with strict bedrest & it probably contributed to my baby's birth at 30 weeks. We all survived it and both of my children are doing fine now. This isn't an ethical debate, it's just real life: these are difficult situations. Easily accessed social services, compassionate listening & creative thinking would help patients in these situations.
What IS a good, compliant, perfect patient supposed to do in such an impossible situation? I am so frustrated with medical personnel who put these demands upon us and don't listen when we object that it's impossible for whatever reason, and then get angry at us for being "reckless." I'm sure the woman in the OP didn't WANT to put her unborn baby at risk, but what should she have done? Where I delivered my second baby, I wasn't even allowed to watch my 2 year old alone for 10 minutes in my postpartum room, there had to be another adult at all times. If I had gone into labor or had an emergency when my husband was not available, what would they have had to offer for me? Put my daughter in foster care while I "comply" in the hospital. That's it.
Is it really her right to make whatever decision she wishes, assuming she has all the information? What about the rights of her unborn child? Does she have the right to smoke crack, so long as she has all the information about how harmful it is?
(This is an extreme example, of course, but it's to illustrate the point that the line must be drawn somewhere. At some point, the life of the unborn child must be taken into account, difficult situations or not.)
I don't know. Does a pregnant woman also have a right to get in a car and drive? That's also dangerous. And about as useful a comparison as the one to smoking crack. And while debating bed rest vs. continuing one's life, what about evidence that total bedrest doesn't improve outcomes?
A parent has the right to refuse their child a blood transfusion. A woman has the right to refuse medical care. In all but the most extreme cases the person best qualified to make these life decisions is still the mother.
I can appreciate your genuine concern for this patient. At this point, I think you did all you could and if something happened, it was her decision and her responsibility.
I don't know where this person is spiritually, but with each of my pregnancies it drew me closer to God each time. I know that's not usually a subject breached with a physician, but patients are often on a totally different page spiritually than their doctors, and feel differently about making decisions like this than their doctors do, who see it from a decidedly clinical perspective. I refused a c/s at around 39 w after getting high BPs and learning my baby was breech so that I could go into labor on my own and hope to VBAC. It didn't work out, but I made that decision and walked out of the hospital that day. Perhaps, once your patient has had some time to think about it, pray about it or whatever she's doing, she might come back and decide to take your advice.
Thanks for sharing this with us.
Would an Ob/Gyn go as far as this doctor to help a patient? Doctor pays rent so patient can receive treatment
There is another ethical layer which is the fact that our society glorifies "having a baby". People conceive children that they may have limited or no resources (financial, emotional or spiritual) to care for. There seems to be little thought or planning as to whether one has the ability to care for a 26 week pregnancy or a 5 year old child cos "we made love and created this gift from God." Gag. This leaves the rest of us in society who actually weighed the pros and cons of bringing a being into the world holding the bag.
As to this case, this woman has the rights to her own body and her fetus is part of her body. She should be given all the relevant information and resources and left to make her own choices.
Shit, if men had babies, you can bet none of them would have had to try to choose between caring for four other beings and the baby on board. The Patriarchy would not have put them in that position.
I think every here has made good points - I disagree with some of them, but I can completely see where they are coming from.
I guess the more I am reading these comments, the more I am thinking a lot of this falls into pro-life/pro-choice arguments.
Is the fetus really just "part of the mother" at this point, or it's own person? Does the unborn baby deserve rights and advocacy, or is the mother's rights the most important to uphold?
Like most ethical questions, it's a lot of gray area. A lot of people think they know the "only" answer - but reality isn't that black and white.
These are questions that keep HCPs up at night wondering if they did the right thing.
"It seems like there should be legal recourse to step in and mandate whatever actions necessary to save/protect the baby."
This sounds SCARY to me. This is the line of reasoning used to force women into c-sections they won't give consent for. That's a very, very slippery slope. VERY.
And smoking crack? Come on. It's illegal to begin with and doesn't compare to having a lot of responsibilities and not being able to sit in the hospital on bed rest.
And speaking of bed rest--from what I've read, there isn't a lot of evidence that in-hospital bed rest does that much to change outcomes ANYWAY. So this woman may actually have been making a decision based on that fact.
A pregnant woman is a woman with her own rights, values, and life circumstances, who happens to be carrying a child, and only she can make these types of decisions. Yes there is an important point to be made about whether this woman or other women like her are truly informed of the risks & benefits of the choices they have in front of them. But assuming they do (and I would bet that this woman most likely had the dead/damaged baby card pulled on her left and right for hours before she was finally allowed to leave)... they are the only ones that can make the choice. The implications of any other arrangement are extremely troublesome...
Excellent POV given all around.
As a mother of five with healthy parents and a supportive husband I couldn't fathom having to choose. We'll actually I have. When I needed an urgent appendectomy while 7 months pregnant with #4 yet had a job to maintain so I could continue to fund the life of my older three and still wanted to conserve some time off for maternity leave. My OB gave me the worst case scenario which meant appendectomy asap with risk, inlcluding loss of baby and/or my life (cause yeah anesthesia is still deadly) or chance appendix not rupturing now but later and then more risk again including loss of life for baby and/or me.
My support system included other friends and family who were too legitimately busy with their own lives.
My children are very well spaced, planned for and thought out but shit happens. FOR REAL!!!
Would the doc/ blogger terminate their career to care for an ailing parent (say with cancer) plus nieces and nephews if the mother had to enter into rehab or psyche care?
The bigger problem is that we have cultures of folks who now live in the ameriKKKa where the family and it's extended village is no loger valued.
SHE NEEDS A VILLAGE, Not critics!
Oh, and until abortion becaomes illegal at every week following implantation I don't want to hear any commentary about the rights of the unborn. What a schizophrenic society we live in. Chastise a woman pregnant by choice for having to mannage extreme choices yet legalize and even pay for the early demise of the unborn.
Well that's my rant!
"It seems like there should be legal recourse to step in and mandate whatever actions necessary to save/protect the baby."
This statement TERRIFIES me. Who gets to make that call? Can the courts decide? What if the mother chooses one medication over another for an illness during pregnancy - should the courts be able to trump her decision and say hell no lady, you need to take X med?
Or what if there's just disagreement about what's safest? The thing that terrifies me is the court in FL that mandated a woman have a csection because the doctor thought it was safer than a homebirth - they pulled a laboring woman out of her attended homebirth, put her in court while in ACTIVE LABOR unable to advocate for herself in that type of environment, and she was court ordered to have a c - then whisked away.
Sure, it was about the rights of the fetus. Someone had to have legal recourse to protect it, right?
How horrifying paternalistic.
If you can't "reconcile your feelings" - it isn't about you, the caregiver. It's about the patient. Those who see a potential conflict should re-think whether OB is an appropriate career choice.
"We spent hours negotiating with her" - I think this patient was enormously patient with the medical team, especially given that she was there for a routine anatomy scan which, after all, she could have elected to skip.
This woman went to her MD for routine testing, trying to be a good patient and mother, and ended up being badgered for hours when she had three other kids and an elderly relative to consider. She IS the village for her family. She sounds enormously capable and admirable.
No wonder I see so many unhappy L&D stories on these blogs.
"There is another ethical layer which is the fact that our society glorifies "having a baby". People conceive children that they may have limited or no resources (financial, emotional or spiritual) to care for. There seems to be little thought or planning as to whether one has the ability to care for a 26 week pregnancy or a 5 year old child cos "we made love and created this gift from God." Gag. This leaves the rest of us in society who actually weighed the pros and cons of bringing a being into the world holding the bag."
To the writer of the quotation above:
1st of all- What in the world does this have to do with the story at hand. There is nothing about the woman being unable to afford her children, only that she is having difficulties in being able to afford 24/7 care for her children and another adult at the drop of a hat. Really? We need to be prepared to pay for immediate round the clock care for our children at the drop of a hat before even thinking about getting pregnant?
2nd- How dare you. I'm not saying people don't make immature decisions regarding having a child, but to judge others having financial difficulties or maybe an unplanned pregnancy (which it isn't in this case anyway)and accuse them of trying to force others to carry their load is just terrible, and again, irrelevant to this story.
"When you are caring for a patient with different values/circumstances than yours, how do you reconcile your feelings so that medical care is not affected?"
I am struck by the unwitting arrogance of this statement. It is not about you, and that is the how you make sure medical care is not affected. I am a mental health professional and I deal with similar issues on a daily basis. The thing that makes me RESPONSIBLE and FAIR as a provider is that I recognize that people who are competent have the right and authority to make their own decisions, whether I agree with them or not. How I feel about their choice should NEVER affect the care that I provide. This is not my journey, and they are not my choices to make. They might refuse meds, services, or treatments that I might think will be immensely helpful, or even to comply with a lease to keep their housing. Still it's their choice and they have a right to make those choices.
It is simply arrogance that makes us professionals feel that we know what the right answer is for any other person.
We can and should offer information, likely consequences and their probabilities, but any type of coercion (such as negotiating for hours) is unethical in my book.
Truly stunning,and I am so glad that I work in an environment that recognizes an individual's right to make choices, even if it leads to serious consequences.
Great points, Sarah.... but again, we aren't just talking about an individual's rights. We are talking about TWO patients here (mother and child). That is why I think this gets a bit more complex. If it is one person acting for herself, then of course it is simply her choice alone. If it is a woman making a choice that can be deadly for her child, that is another issue all together. It isn't so black and white anymore.
This continues after the child is born, of course. We've all heard of cases where courts basically forced parents to give their child life-saving medical care when they wanted to refuse it.
No matter how you feel about all of that, the fact is that a later term pregnant woman isn't just making choices for herself...she's making them for herself and her unborn child. It's not quite apples to apples to compare this situation to one where a (non-pregnant) person is, say, refusing cancer treatment for themselves.
"a later term pregnant woman isn't just making choices for herself...she's making them for herself and her unborn child"
So in a case where a pregnant, late-woman makes an informed decision for herself and her unborn child with which the health-care provider does not agree, the health-care provider should have the ability to override the decision of an otherwise competent woman? What if the nursing staff is supportive of the woman's decision but the physician is not, or vice versa?
To reiterate: leave your personal beliefs at the door if you want to work in OB. If you can't, choose another medical specialty.
"So in a case where a pregnant, late-woman makes an informed decision for herself and her unborn child with which the health-care provider does not agree, the health-care provider should have the ability to override the decision of an otherwise competent woman? What if the nursing staff is supportive of the woman's decision but the physician is not, or vice versa?"
No, no, no... this isn't at all what I am trying to say. I am saying the decision is much more complex. In a case (like the one presented in this blog post) where there is no medical certainty of outcomes... or every high probability of a certain outcome... it would be unethical for anyone to interfere with the mother's decision. Risks should be presented, and the mother decides. Opinions can be shared, if asked, but the decision is best left to the mother in these situations.
In situations where the outcome is much more clear, and even inevitable, and choice A saves the life of mother and baby and choice B is almost certain death or harm to the baby... in that case, things get murky. These are the cases where it does sometimes lead to legal action, on behalf of the unborn child. But, again, these are extreme and rare cases but they do happen.
But, of course, the default decision maker should always be the mother. Things just aren't so black and white when she makes a decision that most certainly harms her unborn child (just as there is trouble if she makes decisions that harm her born children!)
I don't think I'm saying anything that controversial here. But the question is... where is the line drawn. When, and under what circumstances, is the child protected (just as all children are protected). At 24 weeks (viability) at 37 weeks (full term) or not until birth?
I don't have the answers, and I'd not so arrogant as to assume I do know all the answers. These are just questions that all OBs, social workers, and medical lawyers for tha matter think about all the time.
"These are the cases where it does sometimes lead to legal action, on behalf of the unborn child."
If you research actual case law, virtually every one of those cases resulting in treatment of a pregnant woman against her will has been overturned.
"where there is no medical certainty of outcomes... or every high probability of a certain outcome... it would be unethical for anyone to interfere with the mother's decision. Risks should be presented, and the mother decides."
Excellent. It seems that most of us agree (not sure if Anonymous is multiple people).
"Things just aren't so black and white when she makes a decision that most certainly harms her unborn child"
Well, no, and I can see some benefit to preventing women from smoking crack while pregnant... given that smoking crack is an illegal activity, pregnant or not. But what about smoking cigarettes, or eating sushi?
"the question is... where is the line drawn?"
Ah. It appears you were attempting to have another discussion entirely, based on a scenario quite different from the one the blogger described.
"Ah. It appears you were attempting to have another discussion entirely, based on a scenario quite different from the one the blogger described."
Er... yeah. I am guilty of that. Sorry to bring the discussion off track.
And, yes, there is more than one anonymous poster here - just adding the confusion.
I'll back back to lurking quietly before I cause more confusion. :)
I'm also wondering why this post is tagged with "drug use in pregnancy." There's nothing in the narrative about the mother being a drug user, is she getting tarred with that label because she's lower income or minority or something? I sure hope not.
I think this is one of those situations that fits into a saying we used during my medical ethics fellowship "Ethics is easy; life is hard."
The ethics of this situation and many like it are pretty clear. The pregnant woman as a competent adult has the right to make any decision she chooses. Case law as mentioned above, pretty clearly upholds this right as well.
On a personal level as a health care provider, it is scary and disturbing to see a client make a decision you feel is dangerous. Although I fully support a woman's right to do so, I am still a thinking and feeling human being and still feel what I feel. A previous commentor state "To reiterate: leave your personal beliefs at the door if you want to work in OB. If you can't, choose another medical specialty." I agree that our personal beliefs can't govern how we care for patients, but doctors and nurses and social workers do have personal feelings and sometimes strong reactions to situations we encounter and discussing them in a forum away from patient care can be helpful.
In the OP, as this woman's care provider, I would of course counsel her as objectively as possible on her risks, and if she made the choice to go home, I would do everything in my power to maintain a good relationship with her and make sure she knew that if her situation changed, she could return immediately for care, without any condemnation. If there were lesser things we could do for her, I'd offer them (like the outpatient steroids, or maybe in another situation outpatient tocolytics if needed, or home monitoring if it's possible.)
Sometimes, I think when we face a "non-compliant" patient we are so adament about getting our point across that we shut the door on the patient's ability to seek care again when able/willing.
"I agree that our personal beliefs can't govern how we care for patients, but doctors and nurses and social workers do have personal feelings and sometimes strong reactions to situations we encounter and discussing them in a forum away from patient care can be helpful."
Sure. I'm a veterinarian, not a physician. Ethical discussions are a hot topic in any veterinary discussion forum, amongst colleagues, and during cocktail hour at any veterinary meeting. This helps us maintain our sanity.
"I think when we face a "non-compliant" patient we are so adament about getting our point across that we shut the door on the patient's ability to seek care again when able/willing."
Bingo. That's why I don't think a good doctor should attempt to impose her personal beliefs upon a competent, well-informed patient/client.
Lily - sorry, that was my mistake. When I add tags to the post, it automatically fills in what I start typing. I removed the "drug use in pregnancy" tag. It wasn't appropriate for this post.
Anon 7:35...as pointed out, she was legally able to go to a selected clinic and ABORT the "child"...except if this was a pro-abortion log we'd be calling it a fetus or product of conception. Americans want to have it both ways in the "when is it a human" debate.
I only have a dog in the fight when a someone wants to make a decision that is going to cost taxpayers money...like refusing to make a 92 year old on a vent with pressors a DNR, or insisting on the full court press to save a micropreemie who will cost society (i.e., you and I) millions of dollars.
If a family like the Duggars who pay their OWN bills want to make a choice that is not illegal, more power to them.
Pattie, RN
Are you referring to the Florida case of court ordered bedrest? I'm very curious to see how the legal system handles this case of a mother's wishes conflicting with an unborn baby's medical need.
I believe that bedrest saved my only 2 surviving babies (after losing several in the late 2nd trimester due to IC & placental abruption) but I got a different opinion from every expert about the value of bedrest or hospitalization. They had no guarantee it would work, sending me home with meds & a babysitter would probably have been just as valuable, yet no one mentions a home health option for bedrest moms?
Mental health holds are one thing, maternal health holds are very different... I'm uncomfortable with the idea that some women are court ordered to controversial medical treatment. I'd like to see you follow up on this subject, give us your perspective as you become the midwife for moms in difficult situations. I hope you work hard to find solutions that are acceptable for mom and baby.
FYI - the original author posted an update. She said that for two weeks, they called this woman every day to check in and offer support. They talked to family to get them on board as well. Then end result? After two weeks, the woman admitted herself to the hospital (still pregnant). So they stayed on her, offering as much information as possible and tried connecting her with a support system to help with her kids and mom.
Doctorjen, you did a medical ethics fellowship? *swoon*
I agree that it is impossible to leave your feelings at the door. I won't, and I plan to be an ob/gyn. I will also fight to protect my patients' autonomy, and practice informed consent as comprehensively as possible. I won't judge them, and in most cases, I will stand by their ability to refuse a treatment or choose a course of action that isn't what I think is the best health decision.
I think only one commenter here even mentioned home care assistance. The elderly and the disabled can sometimes get aide service paid for by Medicare/Medicaid. Home care aides assist people in bathing and dressing, cook for them, do their laundry and their shopping. This differs from state to state. Isn't there any such provision for pregnant women who need bed rest? Would an insurance company pay for such care if medically authorized? Was a hospital social worker involved in the discussion who could investigate whether the woman qualified for such services?
Considering the societal cost of caring for an extremely premature baby, the cost of a few weeks of home care aides would be very small. If this isn't available, it should be.
Susan Peterson
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