When a patient requests to drink cold ice water before removing high-flow nasal cannula (to withdraw life support), that will be the last one in his life.
- Don't thicken it.
- Make sure he gets what he wants.
- Don't ask anybody. It won't take long. Go get it by yourself.
I'm floored with so many responses.
In comfort care patients at the end of life, the rule is simple.
- If that makes the patient happy, do it.
- If that doesn't don't do (or discontinue) it.
Did FaceTime right before palliative extubation.
Patient was very sick and his time was expected to be very short after extubation.
I thought we can just clean his face, but his nurse took time to wash and comb hair, to make him even nicer.
Learned the lesson from her.
In a family meeting, after you explained the situation is worse, I see many doctors ask,
"What would he WANT?"
I think this is a BAD question, although I'm aware it is well-intentioned.
I will tell you why...(thread)
1/
When you examine a patient in the ICU, even if they are intubated and not awake, and even if nobody is outside,
- Draw the curtain to make sure patient's privacy, before turning over the sheets.
- Say something like, "Hi Mr. (or Ms.) xxx, let me examine you"
"What would he WANT?" is NOT the right Q.
Instead, we should ask the followings,
- "What are you most worried about?"
- "What are you hoping for?"
- "What is most important to him?"
- "Tell me about him."
- "What makes his life meaningful?"
6/
A med student who rotated with me last year, who is now an intern in an outside institution, called me.
He had a very tough case and wanted to discuss how to navigate the case.
As a clinician-educator, nothing makes me happier than being relied upon by previous trainees.
Death doesn't bother me because death is not a failure.
Our mortality is 100%. Everybody dies.
I do care how patients die, though. This obviously doesn't mean I hope they die.
It's the opposite.
My focus is "how they live" until the very end.
I see trainees give prognosis ("days to weeks") immediately after "how much time I have left?"
It is crucial (and awful) information, and has to be delivered carefully (and as best as possible).
Things I pay attention to (mini thread)
When they ask "how much time?"
1/
I cannot put this in my CV, but "Thank you for your teaching" from graduating medical students is probably one of what I'm most proud of in my career as a clinician-educator.
This am, I bumped w a young man in the hallway. He grabbed my hand, said “I was a med student here. U don’t remember me, but I rotated w u 3 yrs ago, now a resident in Boston. What u taught me made a lot of diff on me”.
Are there any better words than this for an educator?
Then you make a recommendation.
"In order to achieve that goal, I would recommend....."
I say it again.
"What would he WANT?" is a BAD question.
It is more harmful than useful.
Please do not use "WANT" !!
8/8
It is better to sit down when you talk to a patient/family, even for a few min.
By standing, you give the impression that you are busy and you can leave at any moment, which makes pt uncomfortable.
Let me share my anecdote.
1/
By hearing "palliative care", many of you think that I will try to make everybody DNR/I and discourage all the aggressive chemo/surgery/treatments. Don't you?
That's not true. That's not my job.
My job is to match the treatment and their unique goals.
1/
You need to let them talk and listen carefully.
After that, you should try to phrase the goals of care with your own words.
"Based on what you told me, we should probably focus on comfort and make sure he doesn't suffer any more"
7/
One of my favorite consults is goals of care BEFORE high-risk CT surgery.
Why palliative care/GOC before surgery?
It is because we need to have a high-quality conversation, in very challenging cases.
In my opinion, there must be 2 phases of conversations.
1/
In a family meeting, try to answer questions as simply as possible.
Family "Is he going to get better?"
a) "Well, his white count is elevating, x-ray shows pneumonia, kidney function is deteriorating,,," 👎
b) "Probably not (and silence)" 👍
1/
At the end of a family meeting, every time I hear patient/family say "Thank you" to me, the very person who gave them the worst news in their life, I think what matters is not the news we deliver, but the way we deliver it.
Then, I can answer "I use it for PowerPoint and Excel, but I don't edit music or movie. I can afford $1200."
He could say, "OK, then you should buy this model A"
This is more helpful, isn't it?
I think we should do a similar thing in medicine.
5/
Extremely honored to announce that I received the Physician of the Year award!!
I have been in disbelief since I heard it but looks like it's true.
It's meaningful that a palliative care clinician received this.
Appreciate all the support from my colleagues and my family!
I cannot, because I don't understand what "GHz processor" or "GB storage" really means.
Rather than that, I would find it more helpful if he asks me
"What is the main purpose of the laptop?"
"How much is your budget?"
4/
A very bright med student, Wendy Tong, who rotated with me several months ago just published a beautiful poem in
@JAMAOnc
She held an iPad for a family whose loved one was dying. Family couldn't visit because they were far away.
In a family meeting, when patient/family asks you about treatment options first, don't answer that.
If you do, I can guarantee you will get stuck.
You have to explain the medical condition first, and talk about goals/values next.
Treatment options are at the last.
1/
The purpose of treating the disease NEVER should be treating the disease.
Always, it should be to help the patient.
If it doesn't help the patient, don't treat the disease.
When you see family members at bedside, ask them
- What time they came here
- From where
- How
- How long it took
- How often they come here
Believe me, this will help you.
When we give bad news, we tend to minimize it, probably because we are uncomfortable.
- She is doing "a little bit" worse today.
- We "just" want to give you an update.
It doesn't help.
Instead, say like,
- She is doing worse.
- We are concerned and want to talk to you.
In a family meeting, when you discuss the possible negative thing in the future, you should be careful using "if" vs "when".
At end of life,
👎 "If" your condition gets worse,,,
👍 "When" your condition gets worse,,,
It is going to happen. Don't make it ambiguous.
What you should do at this point is exploring goals/values of the patient.
But if you use "want", that q is (automatically) asking about treatment options, not goals/values.
(I want chemo, I want dialysis, etc).
2/
Patient is aware that they are dying
They already expressed that they want to be comfortable.
Then,
Don't ask "do you want CPR?"
Just say "we will not do CPR"
The reason for palliative care consult is GOC.
Yes, you have to start GOC by asking "What did doctors tell you?"
But this question should NOT come right after you introduce yourself.
If I were a patient, I would think "Who are you?"
It won't make a good impression.
1/
- Expect emotions. I usually follow up with "Is this surprising to you?"
- Be prepared with NURSE statements.
You should develop your own style and PRACTICE!
4/4
When you see a family member at bedside, in addition to questions about patient,
Ask them
- what time they came
- how they came
- how long it took to commute
And, only for a second, just put yourself in their position and talk to them.
It won't take long, but it will help.
Elated to receive the letter that I was promoted to Associate Professor of Medicine!!
So grateful for my mentors, colleagues, trainees, patients and my family.
Obviously, this is not the goal.
Will continue to work on elevating the level of
#palliativecare
in this hospital.
Today, when I was about to start talking with family in the hallway, my resident suggested finding a quieter place.
He said, "Setting is the key. You taught me."
The trainee I taught 3 yrs ago reminded me of the lessons I taught him.
Teaching is beautiful, isn't it?
For example, your laptop got broken, and you came to a store to buy a new one.
An attendant comes and explains to you.
"model A is 1.4GHz processor/500GB storage/$1000, model B is 2.9GHz processor/1000GB storage/$1500. Which do you WANT?"
Can you answer the question?
3/
"If your heart stops beating, do you want us to do CPR?"
Everybody can memorize this q and ask this. No need for medical expertise.
If we are medical professionals, we should change the way of asking depending on the medical context.
When you are overwhelmed with emotion, cognition doesn't work.
If the news is too bad and they need time to process, it is ok not to discuss options nor make a decision.
- Make sure they are ready to hear. "Is it ok to share that info?"
- Emphasize uncertainty. "we cannot give you the exact number (bcz we don't know), but we can give you our best guess"
2/
A dying patient with comfort care is on nasal cannula oxygen.
If he/she takes it off, don't put it back.
That means NC is not helping them, but causing more discomfort.
Don't do anything which is not helping for comfort.
It was probably the day I received the most compliments in my life.
I received so many compliments that I don't need any more for the rest of my life.
Being praised for what you love to do. You cannot ask for more.
Appreciate support from my family and colleagues.
The 1st week of ER palliative care just ended.
Consult/day, 6, 5, 8, 11, 13, total 43.
This is probably about what I usually get/month.
It doesn't stop......
To be more precise, I would say like
- When your last moment comes (not "if"),
- we will make sure you will not be in any pain (say something positive first),
- and we will NOT do things like tubes or machines.
- How does this sound? (give the chance they can disagree).
In a family meeting, “what’s the next step?” from family is a trap question.
Don’t answer that question directly.
Say “how to treat him/her moving forward really depends on what makes his/her life meaningful”.
Try to explore goals/values, not treatment options.
Once goals of care are made comfort care, you might feel "done" with the patient.
You are busy taking care of new admission, discharge, etc, and you may check patient less frequently.
I think that is the opposite.
You have to come to the bedside more frequently.
1/
- Make it vague and prepare them (the precise number doesn't help here). "I answer with ranges of time, like hours to days, days to weeks, weeks to months, months to years"
- Give enough space. "in your case, it is probably in the range of (pause) days to weeks... (pause)"
3/
When a patient with comfort care dies, I'm not sad. Obviously, I'm not happy either.
I'm just relieved.
Because I promised they wouldn't suffer,
Because they believed me to make the decision for comfort care,
And because I was able to keep my word,
I'm just relieved.
First of all, we need to decide whether or not to do surgery.
The best tool for this is BC/WC model by
@GretchenSchwa10
The beauty in this model is, by giving the WC of surgery and the BC of no surgery, you can create the story for both options.
2/
"Am I dying?"
How should we answer this very toughest question?
My first-ever Op-ed came out in
@medpagetoday
.
Discussed how we should deliver prognosis.
@genevievefri
Opinion | How to Tell Patients They're Dying
At the end of life, we cannot control the timing of death.
Oftentimes it is shorter or longer than expected.
The only thing we can control is the degree of comfort.
If I have to be grateful about one thing with this pandemic, the need for palliative care has never been recognized this clearly.
Our team are like rock stars in the hospital!
A medical student who rotated with me 5 years ago went to a different institution for residency and came back here for a fellowship.
She told me today that the
#palliativecare
skills she learned here were EXTREMELY helpful.
It made my day.
Thrilled to announce that our paper is just out in
@BMJ_SPCare
!!
Common pitfalls in exploring values.
"What would he say?" --> "I don't know" --> freeze
"What is important?" --> "Getting better" --> freeze
What should you do?
1/
Obviously, there is no right/wrong way of dying.
But, personally, I like that
- family at bedside, holding pt's hand
- pt's favorite music playing
- family joking/laughing about the old story of the pt.
- tears at the end
When I can help this happen, I'm happy.
While a) is correct and accurate, it is not answering the question. I see this A LOT.
They are emotional and complicated info won't sink in.
You need to make it simple and answer the question first.
- Give b) first
- ONLY IF they ask you "why?", then give a)
2/2
When you make a recommendation NOT to do something (CPR, intubation, etc), don't start from that.
X "We will recommend NOT to intubate"
O "We will make sure he is comfortable and NOT in any pain, and will NOT use any heroic measures, like breathing tube".
1/
Although I do it every day, I still feel nervous when I give bad news.
I may not look that way (I try not to very hard), but I am.
But I think I should not feel comfortable no matter how experienced I am.
It's ok to be nervous and uncomfortable. You should be.
Because we are having these difficult conversations every day, we sometimes tend to get used to them.
Remember, on the other side, this is a once-in-a-lifetime event.
Never become comfortable with this.
If you feel uncomfortable, you are in the right spot.
Our goal should NOT be to fix the problem or to avoid death, because then we will fail with a certain percentage for sure.
Our goal should be to provide care regardless of mortality. Then we cannot fail. We can win 100%.
When you examine a patient, even if they are intubated and not awake, and even if nobody is outside,
- Draw the curtain to ensure patient privacy before turning over the sheets.
- Say something like, "Hi Mr. (or Ms.) xxx, let me examine you"
"Fight until the very end" may sound nice.
But if we were to do CPR
- We will remove family from the room
- 10 strangers come into the room and start pressing the chest.
Rather, should family stay at bedside and hold the loved one's hand?
We need to explain that.
When you change the pain regimen, you should communicate that to the nurse.
When you had a family meeting, you should update the nurse about what you discussed.
Don't just place the order and walk away.
English is my 2nd language.
I was scared when learning how to break bad news, bcz I didn’t know nuances.
A small difference in the way you say something could make a big difference in how it sounds.
My solution?
Write down how my mentor said and copied “word by word”.
1/
Got a consult for goals of care, but before I actually saw a pt, an intern already did a perfect job.
Another family tried change the DNR, but another intern did another great job.
I worked with both before and taught communication
I can't think of anything better than this.
We started early palliative care intervention in ER today.
Saw 4 new patients.
It is extremely hard to have a conversation with family over the phone.
Of course.
Who would believe their loved one gets so sick so quickly?
But we believe this will make a difference.
I'm OK if they choose full-court press until the very end, as long as I did my best to explain all the available options, and most likely outcomes of those options.
I'm NOT OK, though, if they choose it by the lack of conversations, or bcz I couldn't explain clearly.
3/3
You don't have to memorize the opioid conversion table.
You should, instead, print it out and have it in your pocket, so that you can access it within seconds.
That is more efficient and reliable.
We are not competing about how smart we are.
Making a recommendation is not the same as being paternalistic.
We are helping to interpret their goals/values, and explain how to achieve that.
This is a privilege we have as a clinician because we studied/trained so hard.
"What are you most worried about?"
"What are you hoping for?"
These are 2 questions to start exploring goals/values.
Even if you get the answer, don't stop.
Always follow with "What else?".
They always have more than one thing to hope for (or to be worried about).
Today, I received a letter of gratitude from a bereaved family.
"You will never be forgotten."
Probably the best compliment you can get as a palliative care clinician.
"Are you going to starve her to death?"
Family often ask us when suggesting against artificial nutrition at EOL.
If you take away food from somebody who is hungry, that is "starve to death".
It's different.
1/
Sometimes it is difficult to do that for whatever reason, which I think is ok.
But if you can do that easily, probably you should sit down even only for a few min.
If you are having a deep conversation, you definitely need to sit down. Go look for a chair.
5/5
Sometimes, patient gets better (more awake/interactive) after goals of care were made comfort care and labs/xrays/fingerstics/antibiotics, etc, were stopped.
Family becomes anxious "oh, did we make a wrong decision?" "Was that too early?"
No, that is not the case.
1/
If patient at end of life requests to go back to their country for the remaining days,
- Check their commitment (how strongly they wish that)
- Make sure if it is safe enough (family can go with them?)
If it looks doable, do not waste any minute. Move fast.
“Because he is so sick, his heart could stop. If that happened, would you want us to do CPR to revive him?”
This is how med students are taught how to discuss CPR in med schools.
We need to do a better job.
@SunitaPuriMD
Silence is one of the most effective communication skills. Also, it is most difficult to teach.
If nobody is saying anything, you get nervous and try to say something, which often is not effective.
It's ok to be silent.
If you don't know what to say, don't say anything.
We have to acknowledge its craziness that, in the US, a patient at EOL (who cannot be taken care of at home) has to pay $400-500/day (not /week or month, /day!) for room/board to receive hospice care in a nursing facility, only because they don't have Medicaid.
NEVER say, "I know/understand how hard this is for you"
That's not true. You NEVER know/understand it.
If you want to say that, say
- It must be so hard
- I can only imagine how hard it is for you.
That's true.
I know palliative care saves money for the hospital, but we don't care about it.
I don't believe any of the doctors in any specialty care about it.
If they do, they shouldn't.
You just have to focus on the patient in front of you and do your best.
I'm having difficult conversations constantly for years.
Do I get used to it? Have I become more comfortable?
That never happens.
Do I have to be more comfortable?
I don't think so.
I believe you don't have to and you shouldn't.
1/
Palliative care is NOT only for end of life.
When consulted before surgery,
- we explore the goals/values
- we sometimes encourage the high-risk procedure if that matches the goal
This process will help pt/family regardless of the outcome.
@Surgpallcare
@ColumbiaSurgery
Had a family meeting with a resident.
- He brought a chair to sit down before talking.
- Asked what they know first.
- Very simple and clear explanation.
It was perfect.
I was like "wow, he is very good!!"
Then realized that he rotated with me in the past.
Yes!!
In a family meeting, when you explain the medical condition, there is a rule called "2-min rule".
No matter how complicated the situation is, you need to be able to summarize that within 2 min.
Sometimes I see others talk on and on and on....
1/
In a family meeting, after you explained the situation is worse, I see many doctors ask,
"What would he WANT?"
I think this is a BAD question, although I'm aware it is well-intentioned.
I will tell you why...(thread)
1/
It turned out I have never received these many responses with my tweet.
This is what I told my fellow yesterday. I'm really glad that many people found it helpful.
I did use this twice today, and it helped me that I went over with this tweet yesterday.
Teaching is learning.
"Is it possible he can get better?"
When family ask us this q, "Yes, it's possible" is not totally accurate or honest.
Theoretically, everything is possible.
The q is not "if", but "how possible"
The answer should be "very likely", "less likely", "highly unlikely", etc.
1/ Proud to announce that our “3-stage protocol” for GOC is out in
@MayoProceedings
!!
I came up with this by synthesizing lessons/pedagogy I learned.
Former fellow, Dr. Emily Lu
@MSHSGeriPalCare
, worked with me to write it up.