Alzheimer's and informed consent

[mtpockets]

What is the name of your state (only U.S. law)? California

My father's doctor talked him into a risky operation. My father survived the operation (just barely), but died shortly thereafter due to complications.

I have just learned that my father had Alzheimer's disease. I am wondering whether he had the capacity to consent to the surgery in the first place.

 

[justalayman]

I am wondering whether he had the capacity to consent to the surgery in the first place.

I don't know; did he?

There are many levels of Alzheimer so what he may or may not have been able to understand will be very specific to his condition.

 

[Hot Topic]

How do you know that your father's doctor talked him into a risky operation? How do you know it was risky?

Seems odd to me that you didn't know he had Alzheimers.

Alzheimers can take years to develop. Some people aren't diagnosed right away because they assume that they're having a "senior" moment. They need to be tested and treated by Alzheimer specialists, not just the family doctor.

 

[mtpockets]

risky operation

How do you know that your father's doctor talked him into a risky operation?

My father repeated the doctor's sales pitch later that week. In retrospect I think the doctor oversold the procedure.

How do you know it was risky?

My father had congestive heart failure. He was so weak after the surgery that he was bedridden.

Seems odd to me that you didn't know he had Alzheimers.

Alzheimers can take years to develop. Some people aren't diagnosed right away because they assume that they're having a "senior" moment. They need to be tested and treated by Alzheimer specialists, not just the family doctor.

He seemed okay to me. I don't think he was tested or treated for Alzheimer's by anyone. But his death certificate says he had Alzheimer's.

Normally his attendant took him to the doctor. But I took him to the emergency room a couple of times while his attendant's car was in the shop. I remember being asked questions that seemed odd at the time (for example,does he recognize you?), but if he had Alzheimer's, then the questions make more sense.

 

[Gail in Georgia]

"Alzheimers" is often a catch-all phrase now being used to describe many forms of dementia from mild to severe.

Since you knew your father required some sort of attendant, what did you do when your father mentioned this surgery?

Gail

 

[ecmst12]

What was the surgery? What would have happened if he had NOT had the surgery? What was the desired outcome?

 

[mtpockets]

hospice reimbursement

Since you knew your father required some sort of attendant, what did you do when your father mentioned this surgery?

My father needed an attendant because he was too weak to walk very far or even push his own wheelchair after his heart attack. I didn't realize the heart attack had affected his mental status.

The purpose of the surgery was to remove a small tumor. I was supportive when he discussed his decision to have this surgery. I didn't think it was my decision.

I don't know what would have happened if he had not had this surgery. Obviously the tumor would have continued to grow, but he might have died from congestive heart failure before it became large enough to cause serious problems.

I am trying to figure out why his death certificate lists an illness I wasn't even aware of, one for which he was never tested or treated, but doesn't list other illnesses for which he was receiving treatment. My initial reaction was that the HMO doctor took advantage of him and should have discussed the surgery with a family member.

However, another thought occurred to me today. Maybe the HMO doctor was simply respecting his rights as a patient. The question then would be why or how the Alzheimer's diagnosis was listed on his death certificate. Does the diagnosis affect the amount Medicare reimburses the hospice? Would the hospice receive a higher rate of reimbursement for an Alzheimer's patient than for one who had no cognitive impairment?

 

[Gail in Georgia]

It sounds as if you had good contact with your father. How did you see his responses to you? Did he appear confused and unable to make decisions?

Again (and I work in a medical setting where most of our patients are elderly), the term "Alzheimers" tends to be used quite frequently, often on patients who have never undergone any testing for Alzheimers. It's replaced previously used terms such as vascular dementia or (at times) normal mental changes simply associated with age.

Alzheimers is a progressive disease and even in those with an accurate diagnosis, many are quite capable of appropriate decision making in the early stages of this disease.

Gail

 

[lya]

One thing is for sure--somewhere a physician had documented a physical condition with a terminal outcome in the expected range of 6 months or less; otherwise, there would have been no hospice admission.

End-stage Alzheimer's is an admission-approved diagnosis for hospice.

If the hospice patient receives medical treatment not related to the "hospice diagnosis", hospice is not involved. In this poster's scenario, hospice was most likely not involved as the tumor was not related to Alzheimer's or CHF.

The cause of death has nothing to do with whether hospice is paid or how much hospice is paid. Hospice is paid a lump sum that based on the admitting diagnosis; out of that lump sum, hospice must pay for all of the care, services, and meds that it provides. It is very difficult and requires meticulous management of care and costs in order for a hospice to remain financially viable.

Treatment provided for other problems, those that are not part of the admitting diagnosis' processes, are not covered by hospice and do not affect hospice's payment/reimbursement.

We have no idea of the diagnosis that qualified the patient for hospice or if it applies to this situation at all.

From the mention of CHF, I suspect that heart failure or another chronic, end-stage cardiac condition existed.

I find it interesting that only the surgery is being questioned as an appropriate decision for this patient to make. There is no question about his having hospice, seeing the physician who recommended the surgeon, or the hospital for admitting him, or anything else.

If the original poster had no question about the patient's ability to carry on without him/her and to rely on an "attendant", then obviously, the family felt the patient was competent and did not need their involvement in decision making.

Now, the patient has died and at least one family member is questioning the competence of the patient--all because a death certificate listed Alzheimer's disease as a condition active at the time of death and possibily contributing to the death of the patient.

 

[mtpockets]

diagnosis listed in error

The hospice finally called me back. Apparently the person who handles the death certficates has been out of the office. The Alzheimer's diagnosis was apparently listed in error, and the death certificate will be corrected.

My father was admitted to hospice because of his congestive heart failure.

My father did not seem confused to me. I was under the impression that Alzheimer's patients alternate between clarity and confusion, so thought maybe I missed the confusion because I was not around 24/7.

After the surgery my father said he never would have consented if he had realized how sick he would be afterwards. The error on the death certificate made me wonder if the HMO doctor took advantage of him.

Thank you for all of your informative replies.

 

[lya]

I'm pleased that you were able to clarify the Alzheimer's issue. It didn't make sense for you not to know that he was noticeably confused and did not need to be making decisions(without assistance) such as surgery; so, it didn't make sense that his incompetence would go unchallenged by the physician, the surgeon, the anesthesiologist, and any RN involved in the pre-op stage of the surgery.

 

[abby0880]

glad to hear that

Glad to hear that you have cleared out the Alzheimer' issue. People with severe Alzheimer's disease are not allowed to decide for themselves because they may not be able to decide soundly for themselves. Thus a family member needs to be consulted, however in the case of your father, where Alzheimer's is not an issue, he is still able to decide to undergo that surgery.