From time to time I hear from a patient (mostly through my patient empowerment site at About.com) who complains about a situation that occurred during a hospital stay – usually the spouse or child of a hospital patient.
The great majority of those notes say, “I spoke to the patient advocate in the hospital but they couldn’t do anything for me!”
When I reply, I explain that the hospital patient advocate works for the hospital – not for the patient. Hospital patient advocates usually report to the legal/risk management department in the hospital and get their paychecks from the hospital. They help when they can, but the hospital gives them a line they just can’t cross.
That’s the fact I know. And a couple of times I have met hospital “Patient Relations” people. But until this week, I had never had occasion to try to work with them to help a patient.
This week’s hospital complaint email came from Donna (name is changed) who was a volunteer kidney donor to a friend – not even a relative – just a good friend. She was flown from her home in another state to New York Presbyterian – Columbia late last summer, completed the surgery, and returned home. Since then she has had a number of complications, she has been out of work, and she has been in pain.
During these past several months, she has had to return to NYP-C hospital to be treated for the complications she has suffered. Part of her agreement as a volunteer donor was that all her expenses would be covered, of course.
However – there seems to have been a disconnect with the latest trip to NYC for her treatment and as a result, Donna didn’t get her travel expense reimbursement in time to prevent her from losing her apartment. She and her daughter are now living with someone else – and Donna wrote to me in major frustration.
I don’t usually get involved. I usually find someone else to advocate for patients because I’m not a real, honest-to-goodness, hold-a-patient’s-hand, one-on-one patient advocate. My work takes place through keyboards and microphones, not in doctor’s offices, homes or hospitals. But in this case – I figured a couple of quick phone calls — I might learn something while I helped Donna.
So I gave it a shot. Identifying the phone number for “Patient Relations” on the NY Presbyterian website, I called and spoke with a young woman named Oneida. She told me I would get a call back from the patient relations person who handles the kidney transplant relations work within an hour.
You guessed it. That didn’t happen. Two messages, two hours apart later, I called someone else – Donna’s social worker – and expressed my concern for Donna and my frustration with Patient Relations – except that as soon as I hung up the phone, it rang and there was the kidney transplant patient relations person – Desereen.
We did have a nice conversation, and I am satisfied that they are helping Donna to their best ability. Desereen had been reluctant to phone me back because she didn’t understand who I was or why I was involved. I suspect there was some HIPAA-fear thrown in, too….
Not long after that conversation, the phone rang again and this time it was Ann, the social worker, who told me more about Donna’s situation and her work with kidney donors in general. It was a delightful conversation and I did have the feeling as I hung up that New York Presbyterian’s Patient Relations does a good job of taking care of its transplant donors. It’s not their fault there were medical complications, but they get to clean up the loose ends afterward. Not easy.
Bottom line – for those who seek help from a hospital patient advocate, be aware that this person will help you to the extent he or she can – but they don’t work for you, the patient. There is a line, defined by the hospital, they can’t cross to help you. But most will go to that line and even push it a bit further if they can. They want to help you. It’s just that sometimes they can’t.
Which is why, of course, you as a patient or caregiver will always be better served by hiring a professional private patient advocate who has no lines. They’ll do what it takes, within the letter of the law and medical science, to help the patients they work for.
I’ll be following up with Donna in a few weeks to be sure she’s gotten her reimbursement and she’s back in her apartment. She was so generous by choosing to donate her kidney, but she’s been paying the price. At least it seems like NYP is trying to make it up to her.
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