My crazy week was winding down, finally. Admissions, multiple visits, IDT and unbelievable family issues (literally cannot make some of them up) all stirred together created a week where I am positive I acquired more than a few new silvery strands of hair. But, alas… it wasn’t over until I returned all of my calls… can’t just leave folks hanging for the weekend, you know?
One of my final calls of the day was to the wife of a man recently admitted for breathing issues. During my admission visit, I had to traverse a very precarious road of distrust, misguided beliefs of hospice and just a general wariness towards what the social worker and I were saying. It was uncomfortable and I felt like I was already at a huge disadvantage- from the word go.
But, that’s not always out of the ordinary for us Hospice workers. Most of the time, patients come to us with a lot of preconceived, but, not always accurate thoughts. Never one to shy away from a challenge, I spent the next few weeks working with pharmacists to get this man on the right medications, made multiple visits for symptom management issues and made only promises that I knew I could deliver on. Equipment was on time. Patient’s wife, as well as the patient were delighted with hospice. Now, that’s a big statement considering what I encountered during that first visit. In fact, during the most recent visit, my sweet guy said “Thank you for sticking with me. I know I am not always easy to deal with. But, you know your stuff… and you are just like this ray of sunshine and hope (me??!?) that we needed.” The only stumbling block I ran into, you might ask? The patient’s chosen doctor.
I had never worked with this particular doctor and was not sure what to expect. I saw that he and I are both Greek, so I sent my faxes over including my maiden name (Kavalieratos… Greek enough for you? His wasn’t much easier) because I thought there might be a kinship or an in. But, faxes went unanswered. Notice, that is plural. Phone calls went unreturned. During a desperate moment, I was forced to reach out to the medical director because the doc was going to leave this patient without medications during a long holiday weekend. Needless to say, Greek or not, he had moved himself to my least favorite list.
“Helen… we had a visit with the PCP today and I am just so upset and mad that I needed to talk to you about it,” she began. Patient’s wife was audibly frustrated and went to tell about how the doctor was noticeably rude and dismissive during the visit. He kept talking to them about how their choices would directly lead to death and dying. Sure, they know he has a life limiting illness and know there is nothing curative that can be done, but, is it necessary to repeat something like that over and over to the point that the wife is crying and the patient asks to leave? Is that compassionate care?
So, doctors…NPs…. PA…
A patient on hospice does not mean they have given up.
It means that they have done all they can tolerate and now, they want to live the days they have without pain and with maximum comfort.
We, patients, families and hospice workers, thank you for helping to bring them to this point. Your job was and is crucial. Your job was and is, sometimes very thankless, so, THANK YOU.
When a patient chooses hospice that doesn’t mean that you have failed.
When a patient chooses hospice that doesn’t mean that you are being disregarded. It’s not some sort of “slap in your face.”
Patient have various phases in their lives… neonatologists, pediatricians, internal medicine doctors, gerontologists and even hospice providers. Not many would get upset or offended as a patient moved between those stages. Hospice is another stage.
If you feel as if hospice comes into a patient’s life and takes over, sometimes that is true and has to happen. We have the time to look at medication lists and have conferences with dedicated hospice pharmacists. Those calls allow the paring down of medications and addition of other medications that might be overlooked – ones that make a huge difference in the patient’s quality of life. You do not possibly have the time to do all of that during the insurance mandated 15 minute visits.
Expanding on that thought, by the time a patient comes to hospice, that often have many specialists involved. Primary doctors don’t always get full medication lists, so medications are added and taken away based on flawed information. That’s not the case with hospice. We get to see everything and spend a lot of time tweaking things until things are just right.
If we ask for narcotics, please respond. We ask for appropriate doses and frequencies. Please understand that we are cognizant of the opioid issues, but, these are hospice patient and things are quite a bit different. If you don’t agree, please have a conversation with us rather than just leaving questions and requests unanswered.
This is a collaboration for the sole purpose of patient comfort and ease. Please talk to us about anything and everything you might have concerns about. We are all happy to collaborate, educate and disarm any false truths.
We care about your patients just as much as you do. There is nothing we would ever willingly do to put them in any danger or hasten their passing. That is between them and whatever greater force they believe in.
Hospice patients have a 3-4 month longer lifespan than those choosing curative routes.
Families report more peaceful passings, increased feelings of ease with the death of a loved one, as well as they themselves being more at peace. That says a lot because death is such a painful process for families.
We all took a “Do No Harm” oath. We honor that every day, every visit and every contact. By not speaking poorly of hospice, by not making family members cry during visits, by collaborating with hospice, so are you.
How did my phone call end, you ask? “Helen, I haven’t seen my husband feel as good as he has the past few weeks in a very long time. I prayed for a long time for him to be able to get out a few words without getting short of breath. He is speaking in actual sentences! Full sentences! I can’t ask for anything more. All of those things are due to hospice. You fixed his medicines and fixed our lives. I know it’s not forever, but thank you for this time.”
My day almost ended with frustration and anger, but, we put a plan in place for future issues and wife was even happier.
My day ended with happy tears after her closing thoughts. That’s all I want for all of my patients.