Thursday, April 21, 2016

Hospice; Advanced Care Directives; and Saying Goodbye

Earlier this month, I sat with a loved one during her final week in hospice. During that time, she managed just four short phrases, one of which was "help me."

She had fallen out of her bed in the memory care center in the middle of the night.  She had hit her head on the floor, which was very hard--concrete covered with a thin indoor/outdoor carpet.  I was exasperated to learn that there were no side rails on her bed.*

As a result of the fall, she suffered a massive subdural hematoma that the neurosurgeon told us would have likely killed her instantly but for the fact that Alzheimer's had begun to shrink her brain, making room for the hematoma in the expanding space between her dura and brain. The neurosurgeon advised that she was not a good candidate for surgery.

So there was nothing left but to transport her from the ICU to the hospice program at the memory care center. After a week, she lost the ability to swallow.

Her guardian had executed an advanced care directive on her behalf.  This means she received medication for pain and anxiety management, but nothing else. Not even IV fluids.  I generally believe it's important to honor advanced care directives, but I found it harder to stomach given that a guardian, not the patient, had executed the directive.

When someone subject to an advanced care directive looks you in the eye, grips your hand, and says "help me," what can you do?  What does "help me" mean in that context? Of all the things I thought or hoped she might say, this was a request I hadn't anticipated.

I found myself wondering if I could challenge the advanced care directive. I thought about whether the memory care center had been negligent in not installing side rails on her bed. (I'm a lawyer, after all.)  Then, when she started struggling for breath, I thought about Oregon's Death with Dignity Act.  I considered whether this end was better or worse than a long decline during which Alzheimer's would take her from us bit by bit.

Those thoughts, I think, were just distractions on the path to coming to terms with what was happening and would happen. Ultimately, I settled on the following as ways to "help" that were more constructive:

  • With the full support of the hospice staff, we made sure she received her medications as frequently as her doctor allowed in order to manage her pain and anxiety.
  • We invited a music therapist to come play guitar and sing to her.
  • We sat with her round the clock, spoke to her, played her favorite music and sang to her (she had been in an a cappella group when she was younger and loved music).
  • We applied lotion to her drying skin, chapstick to her drying lips and swabbed her mouth with a moist sponge.
  • We held her hand.
  • We convinced family members that had found it too difficult to be there to join us in her room.
  • We were there.

This woman made me feel like the center of the universe. She was always interested in what I was doing. Always on my side. Always in the audience or the stands to cheer me on. While it's wonderful to have had a grandmother who makes you feel this way and I love her to pieces, I realize that I only knew her in a sort of one dimensional way. She was a lot more than a grandmother and I can only imagine the extent to which the loss I feel is amplified in her husband, siblings and children--people who had longer and deeper relationships with her.

She told me many times that family was the most important thing to her. I hope, at the end in particular, that she had some awareness of how important she was to us.

If you are a hospice or memory care center worker reading this post, I want you to know how grateful I am for the compassion and care shown to my grandmother. Thank you for doing an incredibly difficult and important job.

Our last picture.

* The memory care center told our family that use of bed side rails was prohibited under state law, but based on some cursory research that doesn't seem entirely true. The Oregon Administrative Rules, which include bed side rails in the definition of "physical restraints," provides that residents in care facilities shall "be free from... physical restraints except as ordered by a physician or other qualified practitioner.... Restraints are not to be used for... convenience." See the FDA safety alert on entrapment hazards associated with hospital bed side rails here for another perspective.  I understand that bed side rails can both hurt and help and that a judgment call was made, but if you have a loved one in a care facility in Oregon, you might consider advocating for bed side rails or padded flooring next to the bed.