How many people actually have an advance directive – a living will? Many patients don’t think about it until they become ill. Sometimes, they never get around to expressing their wishes. And the default assumption is often that aggressive care should be offered.
I recently attended a conference which discussed using videos to teach patients what their decisions mean. There, Dr. Angelo Volendes discussed his research on end of life discussions with cancer patients.
Fifty patients with malignant glioma were randomly divided into two groups. One group was given description of care options at end of life verbally. The other group saw a video after the same verbal narrative.
The video depicted three levels of care: aggressive care- CPR / ventilation; basic care (hospitalization but no CPR); comfort care (symptom relief).
The results:
Relying only on verbal narrative: 26% preferred aggressive care; 52% preferred basic care; and 22% preferred comfort care.
Supplemented by video: 0% preferred aggressive care; 4% preferred basic care; and 91% preferred comfort care. The rest were uncertain.
83% said they were comfortable with the video presentation.
In other words, watching the video significantly altered patients’ choices.
Using video to make informed decisions makes sense. If one has never been in an ICU or intubated, it would be very difficult to viscerally understand what that means.
I’ve had the experience a time or two that I tell patients something and they like it and agree. Then I put a written consent form before them and they’re deer in my headlights. I had one intellectually honest–but bonkers–patient tell me that she didn’t realize the things that were in the consent form. When I asked her whether she remembered me telling her the things that were in it, she admitted that she did. So I next asked what the difference was and her and her husband’s replies were: now it’s in writing.
I translate this to mean that seeing is believing. Unless a patient is synesthetic and can visualize spoken words, they aren’t seeing them. We–sophisticated medical professionals–usually get it* but we can’t rely on civilians to do so. I can see why videos might be great, if they’re made well and properly tailored. I almost always draw pictures for my patients–at least 95% of the time I have to explain anything more complex than doing an angiogram. And they get that. In fact, they often ask me if they can keep the diagrams. I always say yes.
*But one time, no. I once testified on behalf of the Cleveland Clinic and a radiation oncologist in a case in which a neurosurgeon was suing the clinic and a radiotherapist for complications that followed stereotactic radiosurgery for a dural AVM. The neurosurgeon was the plaintiff, and the theory of the suit was complex, but mainly hinged on the notion that valid informed consent had not been obtained since the radiotherapist didn’t disclose that, while he had treated plenty of brain AVMs, he hadn’t treated a dural AVM before. Totally bogus, and the jury agreed in detail.
(I argued that the therapist had no more duty to delineate the details of his previous AVM treatments than he–the lawyer–had to inform the first woman that he represented that she was, in fact, the first woman he had represented, the first client over 6 feet in height, etc. The lawyer actually argued with me in court in front of the jury! No kidding. And we had had exactly the same argument at my home during discovery!! What a moron. At least he didn’t violate the first rule of cross: don’t ask a question you don’t know how the witness is going to answer. But if you know that the answer’s going to be adverse….????????? Not sure whether the plaintiff or the lawyer was dumber.)
If a neurosurgeon doesn’t know the potential complications of treating an intracranial disease, I had to wonder whether he was, in fact, competent to have been practicing, which he had been doing right up to the time of his radiosurgery–and afterwards until the complication occurred. The complication was a bad one: retrograde venous thrombosis with attendant cerebellar infarction. Somehow the issue of whether the plaintiff had been getting informed consent didn’t come up. It didn’t need to.
paper does not clarify at which stage in treatment plan was this video offered:at biopsy result, or after debulking surgery or post radiation chemotherapy etc?Most pts with gliom may not be in position to give full informed consent
“POINT SYSTEM” FOR NARCOTIC USE IN NEAR DEATH
For many years, oncologists and hospice medical personnel have been threatened by DEA for using appropriate levels of narcotic analgesia, which in some cases may blur the closeness of respiratory arrest. This has caused some clinicians to avoid that realm entirely, with the result of unnecessary suffering. This is a specially prominent concern in cases where spinal metastases are present.
A patient instruction video might be helpful, but first it is necessary to get DEA off the backs of near-death clinicians.
I propose a “point system” be developed to review clinical findings of patients near death, to determine with greater accuracy the need for very high doses of narcotic analgesia. The idea would be to “stick with the point system” and use that as a legal defense against harrassment from Government.
Development of the point system would be done by a Congress of clinical specialists who must deal with this issue on a daily basis as well as spokespeople from cancer groups and citizens who desire input on such a plan.
Then it would be submitted to DEA as a consensus document. It would be potentially very helpful in the legal defense of physicians and give them the freedom to do what they actually want to do: avoid near-death suffering.
Unfortunately there is no perfect solution to the issue of suffering near death. But the legal system has been a partner in this and their participation has not been constructive.
Michael M. Rosenblatt, DPM