Big Losses and Big Lessons

[Rich_by_the_Bay]

This week, I lost two young patients to advanced cancer.

One was a 28 year old woman with stomach cancer (very unusual at that age). Her young husband and she had discussed her preferences for cardiac resuscitation ("code") status and it was requested that she not be coded. Her parents felt differently, and tried to trump the husband, who was her legal surrogate and was in compliance with her advanced directives (her living will). They waxed and waned and fought to the end. At one point a parent challenged a nurse who was giving morphine to the patient, thinnking it was intended as euthanasia (it wasn't). I empathized deeply with the husband, but also understood the parents' inability to accept the inevitable. After she died, the parents and husband went their separate ways, consumed by grief and bitter at one another. My team and I shed some tears privately and all involved felt awful.

The second was a 39 y.o. woman with a history of childhood cancer that was "cured" with radiation, but that radiation probably caused - decades later - a lymphoma and then breast cancer. She had clearly requested no resuscitation, her family was on board all the way. She received terminal sedation, meaning deep sedation not sufficient to affect vital functions in itself, but deep enough to have her sleep deeply, yet able to awaken when the dose was decreased for brief visits with her family. I don't think she had much physical pain. Family attended her death. It was indescribably sad but peaceful and everyone seemed accepting and also relieved. My team traded hugs and condolences with a grateful grieving family, who thanked us profusely for understanding and respecting their wishes.

 

[Nords]

I'm sorry for all the losses you deal with-- I don't know how you do it, Rich. But thank you for telling us about it.

 

[Meadbh]

I've experienced this a lot. In my work, the parents are the surrogate for their child, who is unable to express his/her wishes. Denial of the inevitable is very painful for the patient and also (sometimes forgotten) for the people looking after the patient.

Advice to forum members: PLEASE put your wishes in writing in a healthcare directive and make sure your loved ones and your doctor are willing to respect it.

 

[FinanceGeek]

Thanks for sharing these "real world" stories. I've always admired medical personnel for what they have to deal with on a day to day basis - I don't know HOW you guys (and gals) do it

I recall when my Mom died in hospice after several days of watching her body slowly shut down, feeling incredibly relieved that her pain and suffering was finally over, and then feeling incredibly guilty for feeling relieved right thereafter. And feeling very sad to lose her. A very complex set of emotions.

It should remind us all what's truly important and to live well for today while planning for FIRE which may or may not ever come. I hear SO MANY stories of people working and working all their lives, retiring, and dropping dead of a heart attack several months later.

 

[Meadbh]

Let's be nice to Rich today. He's had a tough week. I mean....it's been two weeks since I lost a patient.

It wears you down...........

 

[haha]

I second what the others have said. Being a clinical doctor or nurse is a very hard job. It takes brains and soul, and you both seem generously endowed with these.

Good work!

Ha

 

[Moemg]

I think denial is an automatic response that helps the family deal with the pain .When my late husband was in ICU dying I was in denial .Positive he would get better until his nephrologist took me aside and bluntly said " He will never recover " .Painful ,yes but it help me make the decision to let him die peacefully .

 

[Meadbh]

Moe, you're an RN, right? Did that make your husband's illness more or less difficult for you?

Glad to see you seem to be doing fine now!

 

[chinaco]

It is very difficult. My sibilings and I have been caring for a parent that is in bad shape (perhaps dying). She has been in the hospital. When asked about a DNR... I was unsure what to say. I listed "Full Code" until I could talk with sibilings. I was also told that often (with elderly in poor health) they wind up with broken ribs and if revived may last several days and suffer.

I spoke with siblings. Two of them agreed that a DNR made since. One sibling did not to agree because of all kinds of unrealistic scenarios that might happen. Essentially agreed to not make a decision.

What bothered me about it was the sibling that refuted the notion of DNR has not been around taking care of the parent and is kinda disconnected from it. I felt she had done nothing to help out and when it came to that painful decision about what to do... failed to confirm, raised unrealistic concerns,... all that came out of it was more feeling of guilt about it. I felt fairly angry about being the person saddled with the task of making the decision. It is easy to sit on the sideline, watch, and criticize.

I put her DNR. It is the right thing to do. My parent's condition is one that is degenerative with a dismal future.

 

[cute fuzzy bunny]

Sad stuff Rich. I know I couldnt do it.

 

[REWahoo]

My hat's off to you doc. The world is a much better place because you and the other caring people in the medical profession have what it takes to deal with constant tragedy. I'm not ashamed to say that I'm not man enough to be able to handle what you must go through. Thank you for what you do.

 

[Khan]

What bothered me about it was the sibling that refuted the notion of DNR has not been around taking care of the parent and is kinda disconnected from it. I felt she had done nothing to help out and when it came to that painful decision about what to do... failed to confirm, raised unrealistic concerns

From what I have read, it is usually the distant/uninvolved adult child that is opposed to DNR.

 

[Meadbh]

It is very difficult. My sibilings and I have been caring for a parent that is in bad shape (perhaps dying). She has been in the hospital. When asked about a DNR... I was unsure what to say. I listed "Full Code" until I could talk with sibilings. I was also told that often (with elderly in poor health) they wind up with broken ribs and if revived may last several days and suffer.

I spoke with siblings. Two of them agreed that a DNR made since. One sibling did not to agree because of all kinds of unrealistic scenarios that might happen. Essentially agreed to not make a decision.

What bothered me about it was the sibling that refuted the notion of DNR has not been around taking care of the parent and is kinda disconnected from it. I felt she had done nothing to help out and when it came to that painful decision about what to do... failed to confirm, raised unrealistic concerns,... all that came out of it was more feeling of guilt about it. I felt fairly angry about being the person saddled with the task of making the decision. It is easy to sit on the sideline, watch, and criticize.

I put her DNR. It is the right thing to do. My parent's condition is one that is degenerative with a dismal future.

Chinaco, the "daughter from California" (or somewhere else far away) syndrome is very common and guilt is the usual reason for it. There has even been a case in Canada in which the daughter, who I think was a nurse living in the US, packed her mother, who was dying of cancer, into the car and drove her across the continent against her will in a futile search for a cure. After the police had located them, the mother (who had all her wits and knew what she wanted) disowned her daughter and got a restraining order against her.

You are in a very difficult situation if your mom is unable to convey her wishes. Your best strategy is to be as informed as possible and to interpret the information in light of how you believe your mom might see things. It may be helpful to ask for a second medical opinion and also to ask to speak with an ethicist.

We handle this by having team meetings with the family and, if they wish, with extended family and spiritual advisers. These decisions are a process and sometimes it takes several meetings and lots of time before a consensus is reached. Remember that just because someone is DNR does not mean they are receiving care. In fact palliative care can be the most uplifting experience when it is accepted.

Be well. PM me if you need to.

 

[Moemg]

Moe, you're an RN, right? Did that make your husband's illness more or less difficult for you?

Glad to see you seem to be doing fine now!

In some aspects it was harder because I knew what they were talking about but mostly I was just a wife losing the love of her life .

 

[Rich_by_the_Bay]

What a heart-warming response, the board at its best.

My purpose for posting was to shine a light on the contrast between death when all advanced directives are reconciled versus the additional pain when they are not.

But, yes, it was a hard week and thank you for your good wishes. And all of mine go out to the posters who shared their own such moments.

Now I'm gettin' the heck out of here before someone suggests a group hug.

 

[Texas Proud]

Let's be nice to Rich today. He's had a tough week. I mean....it's been two weeks since I lost a patient.

It wears you down...........

Which is one of the reasons my sister was a delivery nurse for more than 20 years... but then again, sometimes they lose one also... but more happy endings...

don't know why she moved to the operating room...

 

[Texas Proud]

As others have said.... it is good to have some of the caring people like the ones here helping out at the end of life...

And I also agree to talk to your loved ones on THEIR wishes.. come on, it is their life you are dealing with.... I have the medical power for my mom... we have had many conversations on 'what would you do' when we see something on TV dealing with death... I would ask, what would you want in this situation.... I know for sure that my mom would not want to by like that lady that was in Florida... but if there is a chance that she will leave the hospital and continue with her good life she wants whatever care there is.... if it is just delaying the end... then stop now and let life takes it course...

 

[DangerMouse]

I'm so grateful that we have people like Rich, Meadh and Moe working in the medical field. I admire you so much, as you do work I could never do.

I agree it is so important to have written instructions as to what you want done. When my father was in the hospice dying from pancreatic cancer he clearly stated he was DNR. However, when it came to the time, I know my mother would have tried to override that decision, if she had of been present. Luckily she was not at the hospice at the time.

Death or should I say the dying process, can bring out the worst in people, because I know it did in the case of my families behaviour at the time my dad died.

 

[Ed_The_Gypsy]

Carpe diem.

 

[SteveR]

What a heart-warming response, the board at its best.

My purpose for posting was to shine a light on the contrast between death when all advanced directives are reconciled versus the additional pain when they are not.

But, yes, it was a hard week and thank you for your good wishes. And all of mine go out to the posters who shared their own such moments.

Now I'm gettin' the heck out of here before someone suggests a group hug.

Nothing wrong with a good group hug once in a while.

I agree with your comments on the contrast. I have been in a direct situation where I knew the outcome of my late wife's medical condition and knew what must be done yet was torn apart by the realization that I would be ending her life with my consent to remove life support. It is a very very uncomfortable place to be...your brain says one thing and your heart another. Unless you have been in the shoes of a person who mush decide on the continuation of life support or the end of life in a spouse or child you cannot imagin what goes through you head and the turmoil and the grief and guilt that comes with it all.

Doctors see this all the time but have the advantage of distance from the emotional attachment a direct family member has in the decision process. I have seen many people die and it is far different when that person is you direct family or close friend than a stranger or mild acquaintance.

I am glad I had POA for Healthcare for my late wife. I have it for my current wife and she has it for me. We have clear directives but her lack of medical knowledge or experience will make any decision more difficult because she will focus more on what MIGHT happen rather than what WILL happen in a given medical event or illness. Still, I would rather neither of us has to envoke the POA as I once did and may have to again for my mother some day.

Rich, you and the other MDs that frequent this board bring a lot of focus and medical experience to the board and have enlightened many people that would otherwise still be confused or misled on many topics. Keep up the good work.

 

[Outtahere]

I can only add myself to the list of people here that admire Rich, Meadh and Moe and what they do for patients and the families. Thank you for all you do.

 

[firewhen]

One things folks could do, especially after ER when there is presumably more time, is be a hospice patient volunteer. Most programs encourage volunteers, after some training, to visit the patients, whether at home or in a facility, to spend some time with them and hopefully brighten their day or just have somebody there. As the medical folks may be able to confirm, too often families do not visit much for a variety of reasons.

I have never been a volunteer, but it is one of the things I have thought about doing after ER, assuming I have the stomach for it. I learned about the volunteer program when we had a relative in hospice.

 

[Moemg]

I knew the outcome of my late wife's medical condition and knew what must be done yet was torn apart by the realization that I would be ending her life with my consent to remove life support. It is a very very uncomfortable place to be...your brain says one thing and your heart another. Unless you have been in the shoes of a person who mush decide on the continuation of life support or the end of life in a spouse or child you cannot imagin what goes through you head and the turmoil and the grief and guilt that comes with it all.

Steve ,
You are so right .It was the most difficult thing I ever had to do .It has given me so much more empathy towards people going through it that I think it really enhanced my nursing care .

 

[lazygood4nothinbum]

first, two words: terry shrivo. and then i'll just leave that at that.

isn't it something how what can seem so horrible can also be so beautiful. i would imagine, doc, that experiences like those must make it hard for you to pull the plug on your own career. it seems almost a calling.

 

[FinallyRetired]

Rich
Just got back from a week away to bring back my MIL to live with us, and read your stories. That's tough, man, and I'm thankful there are individuals like you and other docs that can deal with these situations, shed a tear if you need to, and go back and do it all over again.