Physician Etiquette Question: Important Meeting with your Oncologist

[Mike 03]

I have a question that may apply to many others here on DU.

My father suffers from an incurable cancer and there was recently a dramatic turn for the worse in his condition.

The therapy being contemplated is intense for a man of his age and after reading as many papers and abstracts as possible, there is a question--in his mind, my mother's, and my own--as to whether or not he can (or wishes to) go through this.

But his case was presented to an entire board of oncologists who specialize in cases like his, and this was their conclusion.

We have an important meeting next week, and my parents wish me to be there to ask some tough questions about alternatives to the transplantation option they are suggesting.

Question:

I'm exceedingly nervous about this meeting. I will feel extremely awkward questioning this expert. I've arrived at a list of approximately twenty questions (as brief as I could make it).

Although we don't know for a fact what he is going to suggest (although his assistant told us that he was leaning toward this therapy), would it be proper and more considerate to him to send him my concerns in advance? Or would that come off as presumptuous and as "second-guessing" him?

I would hate to come off as a meddlesome son of one of his patients or to ambush him in the meeting, as some of the questions are technical or have to do with laboratory results, etc...

The last thing in the world I want to do is tick off my father's oncologist.

Another thought I had was to send the list of questions and concerns to his chief nurse/assistant. She and I have corresponded before, and she is very kind.

Since I've never been through this before, I don't know what proper procedure is in dealing with a situation where my parents have serious fears about the next phase of treatment, and they are shy about asking, and I'm being brought in--a stranger--to try to figure this out. But I don't want to ask too many questions (which might sound like I'm questioning his judgment) and upset him.

Thanks in advance for any advice.

EDIT: to spell check

EDIT: Just to add something important that I did not make clear in my original post:

My father's attitude, until now, has been that he doesn't seem to want to know much about his cancer or treatment selections. He trusts his doctors and is more/less content to let them make his treatment decisions. My mother and I are the ones who are studying and reading every paper we possibly can.

But I do know that Auto SCT is something he is terrified of and had hoped to avoid, at least this soon into therapy.

So it's a balancing act of respecting his right not to know, with asking the questions that need to be asked to determine if he absolutely needs to go through this. He does seem more interested in his situation now that this issue has arisen.

[Midlodemocrat]

1. Is there a chance that this aggressive protocol could save your dad's life?

[Mike 03]

2. I don't know. Possibly prolongue; not save. What it could save him is

months of agony.

It may not even prolongue it, but what time he has left might be a better quality of life.

[Midlodemocrat]

4. IF I may, what type of cancer does he have?

Certain cancers have much better rates of remission/cure than others.

[Mike 03]

6. He has multiple myeloma, but he as especially aggressive form due to

chromosomal mutations. He is refractive to therapy that initially helped him greatly.

It's beginning to wear off.

[Mz Pip]

3. Talk to your dad

and be an advocate for his decision. The doctors are working for him, not for themselves so if they have some extreme therapy in mind they should be able to explain clearly to your dad and to his family why this is the best approach.

Hopefully the doctor is professional enough to not take your concern as a personal affront on his expertise.

[Mike 03]

10. I am hoping and betting on the fact you are right. I'll just say up front that I appreciate

his time and know how valuable it is, but there are some questions we have to ask.

The difficult thing is that my father is strangely detached from his own therapy, by choice, I presume.

His attitude, until now, has been that he doesn't want to know much about his cancer or treatment selections.

But I do know that Auto SCT is something he is terrified of and had hoped to avoid, at least this soon into therapy.

So it's a balancing act of respecting his right not to know, with asking the questions that need to be asked to determine if he absolutely needs to go through this.

(I wish I had written it that clearly in my OP--I'll try to add it)

[JuniperLea]

5. There's no such thing as a question that shouldn't be asked...

Oncologists are faced with family questions every single day, and if they are worth their salt, they will take every question and graciously answer it to the best of their ability. I went through the same thing several years ago with my grandfather, who had leukemia and ultimately succumbed to the disease.

Good luck to you and your family.

[kestrel91316]

7. IIRC, multiple myeloma is a very painful cancer because of how it grows

inside the bones, so be sure to discuss appropriate, and if need be AGGRESSIVE, pain management.

[madeline_con]

8. You have every right to ask questions and understand the

procedure, alternatives( if any exist) and the prognosis. If the doctor balks at them, he/she may not be the best choice. A good doctor explains everything to the family in a respectful way to help them make a well informed decision.

[dem629]

9. The patient (and concerend family) is their own best advocate.

I would bet that you are not going to be the first person to question this expert. And you have every right to ask every question.

It's my opinion that as long as a patient (or an advocate) is being reasonable, there's no such thing as a bad question. I would also wonder about a doctor who wasn't willing to fully consult and explain on any issue, especially one of this magnitude.

I wish you the best and hope that you have a lot more time with your dad.

[tpsbmam]

11. Ask the questions, most definitely.

Any good doctor expects them. You have to advocate for your Dad at this point. Take something with you to write down what the oncologist says, too -- it's too easy to forget a bunch of it when you start hearing too much information.

I was Mom's advocate when she had cancer -- Mom wanted to know just so much and no more. It helped to have someone who could talk to her oncologist. She was tough as nails but didn't always want to know the whys & wherefores and I did -- someone had to. Her oncologist worked with us as a team and he was spectacular at it.

Good docs truly expect questions and most I know respect patients & family members who ask them. Sorry your family is having to go through this, Mike.

[Tangerine LaBamba]

12. You're afraid of upsetting him?

Hey, keep in mind he's working for your father - not the other way around - and it's his job to answer questions from his patients and/or his patient's representatives.

A good professional likes nothing more than well-prepared questions, people who actually listen to the answers, who ask more questions, and who are fully informed before they make their decisions. I trust your father's oncologist is a good professional - he would not be in that line of work if he didn't want to deal with patients and their families.

You should, I think, email the questions to his chief nurse, not so much as a substitute for sending them to him, but to ask her if there's anything you're missing, anything else you should be asking.

Then, you make up your final list of questions, and go in there and have your employee - the oncologist - answer them to your satisfaction.

Your post sounds like you're personalizing this one, as if the oncologist would get mad and fire your father as a patient because his family DARED to ask him questions. Well, that's not how it works, so get that right out of your head, and take a stronger position. The physician will appreciate dealing with someone who can meet him on his own sturdy emotional ground - believe me, they deal with shattered and confused people all the time - and he'll be grateful for your organization and clear thinking.

So, just go do it, and I wish you all good luck.

[Mike 03]

14. Excellent points.

I know you are right. I just know doctors are under such pressure nowadays to get through these appointments as quickly as possible, and I know my parents never ask him questions. They are passive patients.

But I'm going to ask these questions, for sure, and let the chips fall where they may.

But I was wondering if it would be a good idea to submit them to his assistant or something like that.

Eh, there's probably not time. The meeting is Monday.

Thank you for your words. They inspire me to just do this and not worry about it.

[csziggy]

13. Don't be nervous - you and your family are making very difficult decisions

And need all the information you can get to make an informed choice.

My second oldest sister acted as a patient advocate for our oldest sister through brain cancer and for our brother in law through pancreatic cancer. She was better able than the spouses and parents involved to ask the tough questions and help find the information to make good decisions. Generally, the doctors and other medical professionals were glad to have someone that was able to ask coherent questions and share the decisions.

I would send the list of questions to the chief nurse/assistant, especially if you have a good relationship with her. That way it will not look as though you are trying to broadside the oncologist and give him time to frame the answers in layman terms. Remember, you are not a stranger - you are a family member with a vested interest in helping your mother make the best choices for your father.

My thoughts will be with you. I know you have a tough road ahead.

[Mike 03]

15. csziggy, I can't thank you enough for your response, My heart goes out to you, your

sisters and your brother for all you and they have been through. Brain and pancreatic are two of the most difficult cancers and I also have lost friends to both of them.

You are so right about spouses and the individual concerned being unable to ask the very tough questions even when you know, privately, they want to ask them.

Thank you for your excellent advice re: whether to send the questions ahead of time.

Thank you so much! This helps a great, great deal!

Mike

[csziggy]

16. Thank you, Mike

:hug:

[Mike 03]

21. This is what I did:

I articulated the thoughts I expressed here to my Dad's nurse, who is his oncologist's assistant, exactly as you suggested.

She is an awesome person, and if she says it is appropriate, I'm prepared to submit my questions to her for consideration and take her advice regarding how to speak to the doctor.

It should be fine!

I'm just going to be flexible and try to do as well as I can and make this meeting count so that everyone walks away more informed, and nobody walks away with hurt feelings.

Thank you again for your inspiration and clear direction.

[csziggy]

26. Oh good! It's important that the questions be asked and answered as much as possible

And remember, everyone is trying to do their best for your father. A lot of doctors tend to be kind of idiot savants - they spend so much of their time being good doctors they may lose track of other things, but I really believe they want to be the best doctors they can.

Sending good vibes to your father.

[6000eliot]

17. I never let a doctor touch me in any way without fully explaing what he or she is doing and why.

I don't care how he or she feels about it. It's my body and my decision.

[canoeist52]

18. My Father-in-law died at home with Multiple myeloma 10 yrs.ago

Back then the prognosis wasn't very hopeful. Maybe they have better options now. He was 87 and had survived colon cancer 2 yrs earlier. After the MM diagnosis, he lived about 5 months. I can't say enough good things about our hospice experience. Whatever treatment your family chooses, my heart goes out to you.

[SharonAnn]

19. Wow, what timing. I just home from a day of medical tests with my spouse and we have

a meeting with his oncologist in the AM. I'm anticipating that the news is going to be either marginal or bad news. In any case, I have done research all during the course of his treatment and gone with him to the Dr. visits, conveyed information that he either "forgot" or didn't think was important, or he didn't want to "bother" the doctor with. I have asked questions that could've been seen as challenging the doctor by someone who was insecure, but have been careful to be respectful but firm.

His doctor has been wonderful in responding. Without defensiveness or evasiveness, he has answered my questions and my husband's questions.

At last Friday's meeting he went over the latest CT scan results that showed three "spots" that hadn't been there before chemotherapy and have apparently developed during the last six months of chemotherapy. He scheduled a PET scan for today and explained that it would show if there's a lot of cellular activity in these "spots" which would indicate a spread of the cancer.

After that meeting, I contacted some medical friends, researched more about colon cancer on the Internet, and decided to schedule a visit to the M.D. Anderson Medical Center in Houston, one of the premier places in the United States for cancer treatment. Through this week I have been arranging getting the medical records to them, getting medical insurance information to them, etc. At no time have I been concerned about how his current oncologist would "feel" about this. My husband is very important to me and he deserves a review by a premier cancer center as to his actual condition, prognosis, and potential treatments if there are any more.

The only mistakes I feel that I have made during the course of this treatment was to wait, trust in his original doctor (a G.P.) who treated him with anti-anxiety medication for nearly 6 months instead of doing basic testing and a colonoscopy in time for this to have been removed without risk of metasteses. Because my husband liked his original doctor, I just let things drift and I should have set up an appointment with another doctor for a second opinion.

As your father's advocate, do what you think needs to be done to protect and care for your father. Don't except less than what you feel is excellent and compassionate care. The cancer patient is emotionally overwhelmed with the situation and their fears and physically overwhelmed by what the disease and the treatments are doing to them. They can't be expected to fight hard for themselves. That's your job!

Be courteous, respectful but firm. Research everything you can, ask every question that you think might be relevant, and help your father make his decisions.

My best wishes for you and if I can ask for something for us, I would ask your best wishes and prayers for us tomorrow.

[SmileyRose]

25. Every patient needs a damn bitch in their corner.

I know that sounds harsh but I firmly believe it. Between my Dad, and now my husband who's just recently home after a 7 month fight for his life in the hospital - and will have likely another year before we know for sure what we'll end up with - I've learned the fine art of "walk softly and carry a really big stick".

One of the critical care nurses told me I cracked them up - I found this way of telling people to do their damn job in a way that made them feel like they had been complimented instead of reprimanded.

[Mayberry Machiavelli]

20. Writing out the questions in advance is a very good idea.

As you said, the time is too short. It's easy to forget an important question.

Order them from most important to least though.

[Barack_America]

22. As a physician-in-training, I say "ask away".

Answering such questions is the oncologist's job.

Don't worry about angering him. Doctors are bound by law and ethics to answer these questions before administering this kind of therapy.

I think that it is perfectly appropriate to e-mail your questions ahead of time to the physician (and perhaps cc the nurse). It will be important for them to determine if the appointment time you have scheduled will be adequate to address your concerns.

My very best wishes to you and your family. My father has battled chronic lymphocytic leukemia for years and we too have experienced frustration and fear when treatments stop working.

:hug:

[JerseygirlCT]

23. I haven't gone through this myself

(and I'm very sorry that you find yourself in this spot). But I cannot imagine any good doctor taking offense at a person asking questions. Even pointed questions. I know when I display some knowledge of a condition, and ask intelligent questions based on that, my doctors seem to appreciate it. They give me an opinion, which I trust because I trust them, but in the end, it's always my decision, not the doctor's.

And this doctor should be the same way. Bottom line is your father's preference, of course. But if your questioning ensures that he is provided with all the best information on which to make his choice, then you will have done him, and the whole process, a service.

Don't feel intimidated - there's no expectation that you will understand as much as the doctor - unless you are also an oncology specialist. But you are important as the son of the patient. And you have the right to ask questions!

[SmileyRose]

24. Been there done that

My dad died in late 2006 of a rare kind of bone cancer. My experiences with Mom, Dad and the doctors taught me.

1. There are never too many questions.

2. No oncologist worth their salt would feel threatened by anyone asking questions but in fact would encourage it.

3. Any oncologist worth their salt would make you feel like your Dad is the only patient they have all day, and have all the time in the world to make sure everyone, you Dad and those who love him, understand all the options available, the costs, the best outcomes, the worst outcomes of each.

4. A really great oncologist will have a case management nurse on staff to answer follow up questions after you leave the office - including via email.

5. Consider having your Dad tell the oncologist, in your presence, including signing what forms are necessary, that it's OK for the doctor and their staff to communicate with you regarding your Dad's condition and treatments. This way, if you need to ask question that may be uncomfortable for Dad to hear then those can be asked without him in the room, or later via email.



It's a very delicate balancing act with parents. We had the same basic thing. Dad just wanted a basics of what was wrong and what the treatment plan was, what to expect afterwards and what can he do to minimize the discomfort of the side effects. Mom had 80 gazillion questions, spent hours days weeks months all over the internet, chat rooms, talking to the case manager, researching etc. She even researched every known method of regulating bowel habits during chemo down to the molecular level........ It kept her busy - it kept her feeling less than completely powerless.

You'll have to deal with Mom and Dad differently and adjust on a day to day basis....... but don't forget yourself. You have your own fears, needs etc. Get your own support system. You'll need it.

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