A Patient Advocate's View

Unexpected Illness & End of Life Planning

If you follow Caryn on LinkedIn, Facebook or Twitter, you probably have read about the client who was diagnosed with a benign meningioma. She was 77 years young and enjoying her retirement from the local University. Her children and grandchildren all lived with her in the home her late husband had purchased when he returned from the war.

Her youngest daughter had inherited her husband’s diabetes and recently she required a lot of medical care. The daughter was still working, but had used up all her FMLA and was hoping to get disability soon. The family had already used all their credit paying for these medical bills.

Then, one day Mom fell down and couldn’t get up. At the hospital, they found the tumor, but it was considered inoperable because the patient had many other health complications. I got the call for help when Mom’s Medicare was almost set to run out. The discharge planner at the hospital was pressuring the family to apply for Medicaid and move their mother to a nursing home. Mom was very upset about the idea and became very loud about her feelings. As happens, the doctors put her attitude down to dementia.

I met with the son and the daughter who was sick herself, but was the one everyone counted on to understand all the issues since she worked in health care too. Mom was suffering from many symptoms of the meningioma, physical and mental. To make matters worse, Mom’s social security check wasn’t in her account. I suggested they check with the discharge planner, and sure enough her check had been diverted to a rehab facility she was in briefly during this event.

The first steps I suggested, was for the sister to get the doctors to give the dementia diagnosis in writing. Then someone needed to go to the social security office and be made the payee. They also needed to arrange for a Power of Attorney and Health Care Agent. All the while, the hospital staff kept changing the plan from Mom going to a rehab, going to a psychiatric adult home and going in for more tests. Mom was now on a respirator, so she couldn’t express her wishes.

At this point, I suggested that the family ask the doctors about hospice care. It took the hospital another two weeks, while they did more tests before they arranged for the transfer to a hospice facility. As if that wasn’t enough, the family dog died at home. Mom was at the hospice for another week, when she passed peacefully with her whole family around her. The house was safe and her assets intact since hospice is covered by Medicare.

Now, this should have been a satisfactory ending to the story, but what happened next is why this story is about the need for preplanning. As far as anyone knew, Mom had never made out a will. The children thought she had some kind of life insurance policy, but no one could find it. The funeral parlor accepted a deposit and said they would take assignment of the insurance policy for the rest. The son called me just as the wake was about to begin. They couldn’t find the policy and her employer didn’t have any record of one. He couldn’t find any of the paperwork about the house either. The funeral parlor stopped the service and offered the family a lesser costing arrangement and the family made do with that.

Now, they have to go to the probate court to appoint an administrator, which will probably be the sister. She will have to research all of Mom’s assets including finding the deed and her creditors before she can distribute the estate. The family doesn’t have any access to Mom’s accounts, and their credit is all gone, so they can’t hire an attorney for help.

This story could have been so different if there was just a little preplanning. Mom, knowing she had three children who lived in her house with their children could have made a simple will. She could have appointed one of the children as her Health Care Agent, so they could have avoided the unnecessary medical treatment and bills. They could have made sure her final wishes were followed in regard to her funeral and spent the time mourning her now, instead of scrambling for paperwork. I can only imagine that Mom has her dog in her lap and is shaking her head for not doing that planning.

July 18, 2011 - Posted by | Uncategorized

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