Adding life to end-of-life care

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Elizabeth Newman
Elizabeth Newman

As I suspect of most journalists, I'm an eavesdropper. Recently I heard a pizza shop employee say to another employee, “No one was being honest with her,” and the other employee said, “I can't believe it. Well, at least she doesn't have kids.” It killed me that they started whispering after that, probably when they saw my ears perk up in attempts to hear the rest of the story.

More seriously, I heard a conversation in a hospital waiting area this week that gave me pause. While I was waiting for the surgeon to give me an update on a family member (all went well), a man, his mother and wife sat down next to me. The man, probably in his 50s, was complaining about advance directive forms.

His daughter said, “What would you want? Do you want us to keep you on a machine?” He said to his daughter, “Psssh. If I'm not here, let me go.” His mother said, “We'll be there every day praying for you,” and made the sign of the cross. His daughter said, “How about we give it a year?” The man shrugged and said, “You'll know what to do.”

The problem, of course, is the man was fairly clearly saying he didn't want artificial measures to be kept alive, while his wife was saying she would want him or herself to be on a ventilator for a year if there was hope of recovery.

While I don't know what the man did for a living, if anything, I think conversations such as “You'll know what to do,” are more common among healthcare professionals. It's meant to be a statement of trust and reassurance. But it's not a real answer to the question.

We must understand, and communicate, what artificial breathing and nutrition mean. Beyond medical care, nursing homes need to make sure to know a resident's preferences: If a resident is dying, who does he/she want in the room? Is there music that they'd want to be playing? When/if should a priest, rabbi or other religious figure be notified?

Even assuming we (or our residents) are healthy and young (-ish), it's incumbent to make sure a family member or friend has access to legal and financial documents in the event of a tragedy. If cremation or burial, or for people to sit shiva, for example, is wanted, it important to let them know and, even better, write it down, along with other wishes. Don't expect a grieving child — yours or someone else's — to remember whether it was Psalm 23:4 (“Walk through the valley of the shadow of death”) or Psalm 121 (“I lift up my eyes to the hills”) that was preferred.

It also is critical, if you are a pet owner, to have someone who could take responsibility for your animals, either for finding another home for them or by permanently taking them into their home. This week I saw a sad post about an Illinois man whose uncle had passed away and his dog didn't leave his side for days. The nephew lived in an apartment and couldn't take the dog, who is now at a shelter and at risk of being put down. Do not assume a rescue group can swoop in to take your animal.

The good news for my hospital friend is that I saw him in recovery a few hours after his surgery, and his wife and mother were at his side. I was glad to know he was going to be fine, but I also hope the conversation in the waiting room was only the beginning of communicating his ultimate wishes to his family.

Elizabeth Newman is Senior Editor at McKnight's. Follow her @TigerELN.


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Daily Editors' Notes

McKnight's Daily Editors' Notes features commentary on the latest in long-term care news and issues. Entries are written by Editorial Director John O'Connor, Editor James M. Berklan, Senior Editor Elizabeth Newman and Staff Writer Marty Stempniak.