A patient with persistent vomiting, dehydration, hypokalemia and abdominal pain.
A patient currently undergoing palliative chemo/radiation for metastatic colon cancer.
A patient who has lost 40 pounds in the last 4 weeks.
A patient who was full code.
A patient and son who had no idea
1) What palliative means
2) That her care was palliative.
The patient and son know she has cancer. The son, I think more so than the patient, was floored when I explained to him what palliative care is and means.
I talked for an hour (at 2am) telling the patient and son exactly what the truth was.
That she is in the dying process. And, in no uncertain terms, I gave her and him advice to "get your financial house in order"
You see, the patient owns a bunch of rental properties. The patient does not have a will. Her assets have not been placed in a trust for tax strategy and court fee avoidance.
I became her/his lawyer and financial advisor, in addition to her doctor last night.
The level of mis understanding floored me. It made my jaw drop. To some degree, it made me question why the patient/family and doctor were on such different levels of understanding the situation at hand.
They told me they were going to deal with all that, "when she got better"
I guess the concept of palliative care has never been explained.
They seem like nice educated, reasonable folks. Folks who understood exactly what I was telling them.
That night the patient went from "do everything for 72 hours and if I don't get better, withdraw."
She went from that to DNR. There will be no CPR, There will be no intubation.
I told her for me to do CPR and stuff a breathing tube in and have you lay on a bed in pain, unable to speak, wasting away would not be something you would desire. She agreed.
So if anything came out of this early morning talk with a total stranger, it was a thank you from the son, a thank you from the patient for being upfront.
A thank you for explaining the urgency of the situation for getting her financial house in order, for the sake of her and her family. And a thank you from the patient for not making "me suffer."
She is not rolling the dice anymore. I consider these nice people to be fully informed as of 3 am today.
Good for you. You recognized their level of misunderstanding and cleared up a lot of issues for them. It's amazing to me how many patients and their families don't get it. Do you think it was explained to them and they just shut it out or nobody bothered to tell them what was going on?
ReplyDeletendenunz:
ReplyDeleteAs a former hospitalist who admitted oncology patients (who were seldom informed of the ramifications of their diagnosis), and now private (outpt only) practice guy, the odds are nobody bothered to tell them. Why? Unfortunately, there is little incentive to comprehensively address the issue. Doctors that do the "heavy-lifting," like HH, will continue to become rarer. They do it because it is the right thing to do.
Bless you, Happy, for doing the right thing. This is what medicine is supposed to be about. I have a similar story; as a pathologist, I knew my dad's diagnosis of (previous skin primary, history of CLL) squamous cell ca metastatic to his parotid with extensive neurotropic invasion was incurable. Do you think ANY of his doctors would tell him the truth? He was a stoic type of guy who would never bring it up unless someone else did first - I was NOT going to be that person and risk ruining our relationship. We were never able to talk about it and therefore I was never able to comfort him or answer the questions i know he had inside.
ReplyDeleteI still blame his doctors; they shirked their moral duty. (Some would say I shirked mine, but you'd have to understand our family dynamics). Bless you for saving someone else that pain.
Anonymous At 7:12:
ReplyDelete"I still blame his doctors."
I blame you. This is because you had all of the tools to explain it to him, and chose not to. Afterall, you at least had an incentive whereas the doctor does not (or were you too busy to read other posts from you colleagues, to take the time to understand THE REASON why people get what they pay for, in most cases).
Your vanity post further demonstrates why doctors will continue to lose at the health care game. I don't begrudge you for congratulating your betters, but please don't assume a mantle of superiority when your behavior is worse than the poor schlub who can at least take ignorance as an alibi. How typical, how pedestrian, how thoroughly modern America, for you to displace responsibility.
Wow, that post from Jan 28, 2008 was rather viper-tongued! Ease up on the poor guy whose dad died! Doc or not, he went through the trauma of his father's death and he doesn't deserve anybody's venom. My question is the use of the word "palliative." You aren't implying here that the word is code for, "comfort for the dying" are you? Because palliative care CAN be used with curative measures. For example, somebody undergoing chemo for curative reasons can receive palliative care to cope with the side effects of the chemo. We used a palliative care consult when my father's illnesses got extremely complex and we needed someone to guide us in creating an interdisciplinary plan of care. Please don't think that palliative care is just for the dying. It isn't. Thanks for an interesting, though tragic, post.
ReplyDelete9:30:
ReplyDeleteI agree with you. anon 7:12. Sounds like a dysfunctional waste of a medical education and family dynamic
I agree with kate, that palliative care is not just for the dying patient. But the reasons why patients/families/doctors sometimes have conflicting goals of care is a very complex social topic that has no easy answers. There are many studies looking into what the doctor says and what the patient hears. Palliative care is really a philosophy of care focused on symptom control regardless of stage of disease, with additional patient/family support in communication and goal setting. Sounds like you did a good job HH. thanks for taking the time. For those more interested in palliative care issues, we recently covered the 'Just Say Die' article and how oncologists might use the word 'palliative' over at Pallimed.
ReplyDeleteIn this particular case, the son and patient was under the impression that the current chemo/radiation the patient was undergoing had cure potential.
ReplyDeleteI just found this site and really need help. I have advanced AML with 30% -40% blasts. I also have MS and am insulin diabetic. My white count is 1.6 but my red & platelets are fine. The drs. say that vidaza with myelotarg could give me an extra 2-3 months (with nothing I have about 3 months) My oncologist feels that I need to decide if a couple of extra months is worth it if I am sick throughout. How do you decide? Any help would be greatly appreciated.
ReplyDeleteHi, I'm sorry to hear about your illness. This is a very personal decision for you and your family to make. If it was me, I would ask my self if the treatments and it's side effects would cause my time on earth to be of more or less quality than doing nothing.
ReplyDeleteIf 2-3 extra months of survival came at the expense of weakness, nausea, infections, hospitalizations, etc... then you have to ask yourself if those extra few months is worth it for you. Only you can answer that.
I hope you find the right answer for yourself.