Last Thursday while we were in a meeting, Strange received a call from the hospital in the town where his mother lives. She had been found unconscious in her home, laying for an unclear amount of time in her own urine. The exterminator that found her called 911 and she was transported to the emergency department. I’m laying out the record of what happened next both to document for myself that I am not crazy and to outline the critical importance of communicating your end of life wishes with your family.

Strange is an only child and Strange Mom is not married. Life with Strange Mom had been difficult lately, mainly because of her absolute refusal to have these types of discussions. At 85, there was a significant probability that she would face an end of life issue in the near future. She wanted desperately to maintain the status quo. We had hints that she had begun to decline, but she refused to discuss her finances or her wishes. The best information we had was based on a single conversation they had a few years ago – if there was a chance she could recover, she wanted all heroic measures in the world performed. If there wasn’t a chance she could recover to write poetry, that was the end. In the last few days we’ve been able to get a beginning sense of how bad her financial situation is. She is deeply, deeply in debt and has $58 in liquid assets. Once her creditors are paid, there will likely be no equity in her home.

Strange Mom’s stroke has been absolutely devastating. An extremely large portion of the left side of her brain is affected. She cannot speak. Up until recently she could not swallow, and now can only manage small bites of pudding. The areas of her brain that are important for information processing and understanding are severely damaged. She can’t follow directions. Her motor function on her right side is severely limited. She cannot care for herself, she cannot toilet, and she cannot move in her bed.  In the ICU, her neurologist said, “We want to be sure that she doesn’t have another stroke?” After the neurologist left, Strange asked, “Why would another stroke be bad? This is horrible?”

After several painful, painful conversations, we developed come clarity that she would not have wanted to live like this. As Strange puts it, she was a woman of language. To not be able to communicate would have been unpalatable to her. Given the severity of her other symptoms, and the fact that she would have needed a percutaneous endoscopic gastromy tube, in order to support adequate nutrition, Strange decided that palliative care was the best route for her, with the long term goal of moving to a hospice setting. With that in mind, we decided on the following goals:

• She should be made and kept comfortable
• It would be ideal to have her with her family at the end of her life, where she would be cared for and not alone.

Now, knowing that there was a storm brewing on the horizon, we had set aside some money to deal with Strange Mom’s final affairs and to transport our family to her town for a funeral.  Before we left the hospital on Monday, we had a positive conversation with the palliative care team about transporting her to Iowa to be with us. We could care for her in our home until she became a hospice candidate, and then she would move to residential hospice. Because her family would be around her and wouldn’t have to travel, we could use a large portion of the money we had set aside for her final arrangements to fund her transport. When we left, the doctor shook our hands, said he understood the plan, and that we should even call his cell if he could help.

A few hours later, the tone of things changed.

Talking to the case manager, she asked if we had considered that there was a non-zero possibility that she would die in transport. I was puzzled. She’s going to hospice. There’s a non-zero possibility that she will die soon anyway. Wouldn’t she want to be with her grand kids if she had the possibility?

Since Monday, the hospital has gone largely dark, with the exception of a couple of intense conversations with the doctor and case manager. In yesterday’s conversation, the doctor reiterated that it was possible that she could die in the transport. We asked, “Are you telling us that her condition has severely deteriorated? Is she medically unstable?” “No, just that it’s a long uncomfortable trip in a car and it’s a possibility.”

She’s immobilized in a bed, sitting in a diaper, with hospice as an end goal, anyway. If we could help her to see her family, isn’t it worth an uncomfortable car ride?

They recommended an air transport, for more than $30,000 if we wanted to bring her home. We can squeak together the money for the ambulance. There’s no way we have $30,000+ for an air flight and neither does she. During the conversation, it became clear that there was an underlying factor that the hospital was considering. The doctor mentioned that his “hands are tied” and that “risk management” was involved.  Today, the palliative care nurse said specifically, “Her doctor is worried that you’ll sue if she dies in transport.”

Fast forward to this afternoon when we had another conversation with the doctor and case manager. The doctor remarked that he did “not believe that it is in her best interest to travel by ambulance.” But, it’s not clear to us why, other than it’s uncomfortable. The solution from the case worker is that we have a choice between a 1) $30,000+ air flight and 2) signing her out AMA and arranging transport on our own.  We asked why she can’t go directly to hospice. Because she doesn’t have an end of life symptom yet that must be managed.

I can’t convey in a blog post how upsetting I found our conversation. I asked over and over, “If you’re telling me that she is so unstable that she can’t be transported because she will likely die, please give us another option.” The case worker kept repeating that our only options are to sign her out AMA or put her on an airplane.  I kept repeating that it wasn’t clear to me that the suggestion that we sign her out AMA was because the doctor truly didn’t agree with our plan and thought there was a high probability she’d die, or because they were afraid of the liability in case she died.

Their other suggestion was to discharge her to a long term care facility, which is only covered by her Medicare if she is going for rehab. We want her to have comfort measures, not intense rehab. Medicare won’t pay for comfort care in a skilled nursing facility and we don’t have $243/day plus the cost of her final arrangements and travel for our family. Neither does she.

They suggested that we move her home, but her home is not receptive to her return and she has no coverage for home health comfort care.

So, the only option that we have on Friday afternoon is to leave her in the hospital.  And that’s where we stand…