Wednesday, September 24, 2014

The patient as the CEO

As an IVF specialist , a number of patients with complicated problems are referred to me by their gynecologist. I usually talk to the patient and study her file before reading the referral note, so that I don’t get biased , and can provide a sensible opinion as to what I feel the right course of action for this patient should be.

Today I saw a 36-year-old woman who had had a myomectomy done for the removal of a 7 cm size posterior wall fibroid six months ago . She had started having heavy menstrual periods after the surgery, which is why she want back to her doctor. He did a D&C, which showed she had complex endometrial hyperplasia . She went for a second opinion to another doctor who asked a senior pathologist to review the slides. This was now reported as early Stage 1 endometrial carcinoma .

He advised her to do a hysterectomy , but she didn’t wasn’t to, because she had just got married and wanted to have a baby.

He referred her for an MRI, so the radiologist could evaluate the extent of spread of the cancer.  The scan was reported as showing myometrial invasion, which was surprising, because the pathologist had noted that this was a preinvasive cancer and the basement membrane was intact, which meant that the malignant cells had not penetrated the endometrial lining.

This was obviously a challenging case , with different opinions coming from the radiologist and the pathologist . I  reviewed the films , and even though I am not a radiologist, felt that the “ extension “ which the radiologist had reported on the MRI scan was in exactly the same site where her earlier myomectomy had been done . This meant that it was hard for radiologist to judge from the MRI images whether the difference in the tissue texture at that site was because of an extension of the cancer or because of scaring because of the earlier surgery . The fact that the pathology report had shown that the basement membrane was intact suggested that this was not an invasive carcinoma .

I explained this to her , and said that you might want to consider treating the endometrial cancer medically with high doses of progesterone, and doing an IVF cycle , because time is at a premium for you now, given your age.

The conservative management of early endometrial preinvasive carcinomas has been well established. These very early-stage cancers don’t behave like typical cancers, in that they do not spread to other parts of the body. The problem is that the moment the pathologist uses the word cancer , patients panic and want the offending organ removed immediately.

From a doctor’s perspective, the safest thing to do is to remove the uterus . No one can criticize that particular approach , because it's the standard textbook advice . If , on the other hand , the doctor , for the sake of preserving the patient’s fertility, advises saving the uterus, and then tomorrow , God forbid , the disease spreads , the doctor would be liable for medical negligence , because the patient could say that by failing to remove the uterus , the doctor allowed my cancer to spread – something which could have been prevented by doing a hysterectomy .

The referring gynecologist’s opinion was that I should freeze her eggs in her next cycle, after which he would do a hysterectomy; and we could then transfer these into a surrogate later on.
This was a perfectly viable option. My advise was this in view of her age, we could go ahead and transfer her embryos into her own uterus. Surrogacy is an expensive treatment option , and my major concern was not so much her uterus, as the fact that because of her age, her ovarian reserve was likely to be compromised.

In one sense she was lucky to have so many options – but this also left her head spinning, as she was now completely confused as to what to do next !  She had 4 different opinions from 4 different specialists – the pathologist ; the radiologist ; her gynecologist; and me ! She was a well-informed intelligent patient, and had done a lot of research on the internet, which meant she now had even more opinions to choose from.

I sat down with her and explained to her how to makes sense of all this conflicting advise, so she could move on to the next step. She needed to search authoritative medical websites, such as PubMed, so she could track down medical journal articles to find out what her treatment options were.

She would then need to print this out, and then , armed with this information , she would have to go back to her primary care doctor – her gynecologist, who would then help her to make the final decision.

I suggested she make a list of all the doubts and questions in her mind, and then go back to the pathologist and radiologist, so they could explain their perspective and rationale and review their opinions.

This is where the role of the patient becomes so important ! A lot of these decisions are not written down in black and white , and when it’s not clear as to what the next action steps are, and especially when there are multiple options, the patient's preferences are of overriding importance. We need to respect these, because it’s the patient who needs to live with the consequences of her decision. We are always uncertain as to what the outcome will be , and as doctors, we can just provide our opinions, but we need to let the patient have the final say.

These are challenging patients , but these are the patients we can learn a lot from - especially if they are well-informed and educated , and are willing to do their homework for themselves . They can make the right decision for themselves, using all the various consultants and specialists .

The problem with having so many specialists today is that they are often not coordinated, and care gets fragmented . This is why documentation and sharing information become so important . I told her she needs to print out all the various opinions; make a list of all her doubts; summarise these on one page; and include xeroxes of medical journal articles. In medicine, often the right hand does not know what the left is doing, as a result of which specialists are often clueless as to what is happening in other fields.  If she took the trouble to organize her records, not only will her doctors be aware of what the state-of-the-art thinking is in managing her particular disease, they would also be suitably impressed that this is a well-informed patient , who was capable of making decisions for herself , and would treat her with the respect she deserves

Isn’t all this asking too much from the poor patient , who is likely to feel overwhelmed by this daunting task ? How can she be expected to make sense of all these complexities , especially when the specialists themselves don't agree with each other ? Not only does she have to worry about her disease, she now has to sit and coordinate the care she receives from all her specialists .
Yes, it can be a huge challenge, but the point is that it is the patient who is the one who has the most at stake . I think the problem is that both doctors and patients underestimate the skills and abilities of patients to be able to select for themselves . It’s natural for the m to be confused initially, but it’s far better that they then start drilling down deeper and exploring all their options, rather than live in a fool’s paradise because they didn’t know any better. This way they have peace of mind that they made the best decision for themselves.

While this can be difficult , let's not forget that patients have dealt with difficult challenges in their lives before , and it's not as if we abandoning them . Doctors are always available to hand-hold and guide them, but they need to take responsibility for themselves , rather than abdicate it . This kind of decision is too important to leave up to a doctor, and patients need to step up when faced with these kind of complex challenges , and respond appropriately . The patient is now the CEO of her medical care team , and she has to make sure all her doctors work together to fulfill her personal goals.

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