Pain can be excruciating and can make life not worth living. Unfortunately, I have a colleague, Martha, who is watching this happen to her father, and she wants you to learn from her experience if you must ever face this nightmare. Here is Martha’s story.
Her dad, Paul, has been living with pain for 10 years. He has tolerated it with some medications, but he is declining fast. It has gotten to the point where Paul wants to stop living this way. Martha brought hospice in for palliative care and learned a couple of things along the way.
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She contacted hospice for an informational meeting to see if he was eligible for palliative care. The shocker was that palliative care does not provide the pain medication (narcotics) that he needs. Instead, they put him on hospice as he met the criteria for this service. The plan being if he can break the pain cycle and have a quality of life again, he will go off hospice. If not, he is planning to stop eating and will pass away. These are tough conversations for anyone to have to go through, but that was not the worst part.
The worst part was getting Paul on hospice. You must have a referral from a doctor to do so. If not, you need medical records, and the hospice medical director can make the order. Right now, in health care, getting ahold of medical professionals is a nightmare.
Martha is a dental assistant. How is she supposed to make calls and get what she needs done when she is at work? Many offices will collaborate with you so that you do not have to take a leave of absence, but in this case, Martha had to. She could not make the system work unless she stormed the doctor’s office.
Lesson 1: Always Be Polite
You get better results being grateful not angry.
On Friday, she heard from the doctor’s assistant Patty at 8:15 a.m. that she would discuss the request for Hospice with the doctor. At 1:00 p.m., there was still no phone call from Patty. Martha went in person to the doctor’s office and asked to speak to Patty. She stayed calm, deliberate, and respectful. She was told to take a seat and they would let Patty know. Then, she was called to the desk and told the doctor was still with patients and Patty would call her at the end of the day.
Lesson 2: Do Not Leave Until You Get What You Need
You know what that would mean? Doctors do not always make those calls and then it would be another couple of days for Paul to live in agony. Martha politely asked for help to get medical records sent to the hospice director and was given a phone number to call. Martha sat back down in the waiting room and made the call. You guessed it, a voicemail. At this point, Martha’s chest started tightening as she realized she was not going to get results and tears silently started falling.
Lesson 3: Have A Plan B
She politely asked for an ombudsman or the supervisor for medical records to help with this emergency. At this point, the staff took pity, brought tissues, and ran back to tell Patty what was going on. Again, Martha was instructed to take a seat. At this point, the entire waiting room was aware that a patient in pain needed a hospice referral, and this family member was having trouble getting that done.
It took a while, but Patty came out and told her the order was written. Martha went home and 2 hours later hospice arrived and started the patient on narcotics.
This story is important for some of you who may be dealing with caregiving issues. It is a nightmare. Then, you add your work schedule, it gets worse. But the challenge of health care workers being short-staffed, or not caring, is simply wrong on so many levels. Why is it that someone must break down with tears of frustration to get action? Paul is getting some relief now. And Martha is recuperating from this additional trauma. This is wrong. Our system is failing so many of our patients. This is why you must be an advocate whether you want to or not.
The intent for this article is to empower you to do what needs to be done to help your loved ones.
My suggestions:
- Go to the doctor’s office if you do not get responses on the phone.
- Do not get angry. People become passive aggressive when you do and are less likely to help you now and in the future.
- Do not leave the doctor’s office until you have a resolution. If she had left when Patty did not want to talk to her initially or when she was given the medical record phone number, she would be no closer to having gotten the hospice referral.
- Also, every hospital system here in Cleveland has ombudsmen who can help with these types of issues. Request one. If not, then ask for supervisors until you get a person to help you out.
I know this is upsetting to hear, but hopefully this will help if you are ever in a situation like that. Do not give up. Once on hospice, Martha found that they were the most helpful supportive professionals who are accessible and never rush or avoid a caregiver. That is how you make a system work.
Email me at diana2@discussdirectives.com to share if you can relate to this experience.
