One of the most challenging conversations providers can have with patients/families, revolves around making decisions when none of the options are particularly good. And when the patient/family says: “we will do whatever the doctor thinks is best”– that is a challenge.
How does that jive with ‘shared decision making’?
And how can a doctor even determine what’s best for someone, when that person isn’t able to articulate what it is that they want. Because aside from wanting to ‘get better’ they may never have really thought about it.
a Patient
Mrs Q is 65 yrs old with metastatic ovarian cancer.
She has been through everything to try to control the disease. Despite surgery, systemic chemotherapy, radiation therapy, intraperitoneal chemotherapy, and more, her cancer continues to progress. After the most recent round of chemotherapy and follow-up imaging, her oncologists finally told her that there were no more cancer related treatment options- the doctors said it was time to consider hospice. But because Mrs Q is still pretty active, she and her family are not ready for hospice (although I’m not sure they really understand what hospice is- but that’s for another post).
She presented to our emergency room with worsening abdominal distention and intermittent pain. She had not had a bowel movement in at least a week. The CT scan showed the cause to be a large pelvic mass- her cancer. In addition, although her kidney function tests were just slightly elevated (thought to be due to dehydration), the CT scan also showed significant, bilateral hydronephrosis (i.e., the ureters to each kidney was blocked by or involved with tumor).
In hopes of preventing permanent kidney injury (from the ureteral obstruction), she was taken to the cystoscopy suite for placement of ureteral stents immediately after admission. Unfortunately the urologists were unable to pass the stents, so the blockage remains.
Now what?
Possible interventions:
- For ureteral obstruction: bilateral externally placed nephrostomy tubes which will be connected to drainage bags. But that’s not what brought her in, it was her inability to pass stool that was causing her distress.
- For rectal obstruction: placement of an internal colonic stent (if possible) to relieve obstruction; or a diverting colostomy, which necessitates an operation and creation of an an ostomy. Because of her poor nutritional state caused by her cancer, an operation carries significant wound healing and infection risks.
If these procedures are successful, she will be left with at least 2 external devices from her body attached to drainage bags. And Mrs Q takes a lot of pride in her physical appearance and just the surgical scar from her previous operation is a source of embarrassment.
So while the urologists and gastroenterologists and surgeons have potential procedures to offer, she would need to remain in the hospital for at minimum several more days while the procedures get scheduled. And importantly, none of these treatments will do anything to slow down her disease. They might prolong her life, but at what cost?
Is this what she wants for the time she has left?
there is another option: I was asked to see her by her oncologist, to discuss shifting to comfort focused care, with aggressive symptom management, and getting her back home with hospice support. In this way, she could spend the time she has left with her family, in comfortable surroundings.
The key to this decision lies in the answer to the question: how does she want to spend the time she has left?
now the palliative consult
Mrs Q and her family were well aware that she was nearing end of life. And they knew there were no easy fixes to her problem. But when I tried to engage in the ‘what’s important to you?’ discussion, I got a lot of pushback from her husband.
No matter how I tried to approach the topic, the response was the same: “we’ don’t want to talk about this”, “we want whatever the doctors think is the best”. And when I explained that for a doctor to make a recommendation about what may be best for someone, knowing what’s important to the specific patient, is critical- the conversation still got shut down.
And I was kind of stuck. I didn’t really know how to continue this conversation without sounding like a broken record, or worse being seen as badgering them. I had tried to engage with Mrs Q directly as well as her adult children who were present, but they all deferred to Mr Q. They remained very quiet. So there was little more I could do aside from contacting her many providers to explain the importance of them being very honest in terms of what the burdens/benefits of any potential intervention would offer.
From my perspective: not a very constructive meeting.
I happened to run into her adult children outside later that day, and they let me know they understood what I was trying to do, but that their father was struggling. And there was little anyone could do when his mind was made up. That was their family dynamic.
I did recommend that if they thought the burdens of a possible treatment were really too great, they should say so. And during the course of her hospitalization I continued to just check in with the family (including her husband)- to be sure she was comfortable and that all their questions were answered and to try to do little things so they knew I was around and on their side.
Mrs Q spent the next 2 weeks in the hospital and the nephrostomy tubes and the internal colonic stent were placed. By this time, she really wanted to get home. But the evening before she was finally going to go home, her condition took a sudden and dramatic turn for the worse. She required transfer to the icu and was placed on pressors and life support. Soon thereafter the family decided to shift to comfort care- and she died in the early morning.
I don’t know if she spent her final days the way she had wanted.
But my gut tells me, she didn’t.
And it just seems very sad…
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