Issue #8 February 2024
In This Issue: Dr. Maissel’s thoughts on how the funding for hospice changes what they say to you about the services you receive.
Hospice: You Can Start Too Soon
Recently I received, in my email, a new issue of Healthassist News, a fine monthly newsletter written by Dianne Savastano. I read Healthassist (and you can too—subscribe here), and this issue in particular caught my attention. It was about hospice care, something I have dealt with for a long time, as a doctor, and more recently as a family member of a dying person. In her piece, Savastano contrasts hospice care with palliative care, and also with the controversial medical aid in dying.
All worthy topics, but I want to address a different one today. What interests me is the lack of transparency of the drivers of the actual services that your loved one will receive on hospice. I must admit that writing this (and breaking the taboo requiring that a compassionate doctor never say anything negative about hospice) makes me feel like I’m calling my best friend's baby ugly. Maybe it's more accurate to say that the baby is beautiful and important, just not perfect.
A few months ago, while attending an event, I saw a table exhibit from a local hospice. I chatted with the table workers, a man and a woman, and asked, “When is the best time to start hospice for a patient?”
“As soon as possible,” the woman behind the table replied. “What if my client still wants to see her doctors?” I asked. “No problem,” the man said.
And then I knew that something was fishy. Because—guess what!—that is simply not true. Once you enter hospice, you can’t always see your own doctors. And that’s something that, as I saw first-hand, hospice workers are not always transparent about.
People don’t realize that when they go on hospice, they are essentially switching their insurance coverage. They are expected to stop all physician appointments unless they have explicit permission from the hospice. And visits with the person’s doctors are rarely green-lit. If a patient or family member asks why, the explanation they’re given is framed as a clinical one, along the lines of, “Once someone is on hospice, they don’t need their previous doctors. The goal is no longer a cure. We take care of everything and we have doctors for you.”
Well, maybe. What they don’t tell you is that hospice gets paid a fixed amount for each 90- (or 60-) day period. The cost of all the patient’s healthcare consumption, anything that is in any way related to their hospice diagnosis, comes out of their fee, including doctor visits. Hospice has a strong incentive to narrow down the care and call it “clinical focus.”
When my mother developed a metastatic cancer that was unresponsive to immunotherapy, she decided not to pursue other cancer treatments. Since I had been a career-long fan of hospice, I immediately inquired about hospice. My mother was all on board, thinking hospice meant nice empathetic ladies were going to show up to take care of her in the setting of her choice. I knew that wasn’t the way it worked. For example, I knew that most of the caregiving had to be done by family or private aides. I knew hospice aides came in for a few hours a week—but I didn’t know the extent of what I didn’t know.
When my mother and I met with the nice hospice intake nurse, it was going well until I mentioned that my mother wanted to see some of her specialists. Mom didn’t want anything aggressive from the specialists—no procedures or crazy tests. Mom knew she was dying of cancer. How long she would live was anyone’s guess, and she was still engaged in her healthcare. She wanted to feel as good as possible until the end.
Toward that goal, she had one terrific specialist whom she wanted to see again to find out how her advancing cancer would interact with the diagnosis he was managing. We also wanted to thank him for all he had done.
Mom also had an upcoming appointment to see a new urogynecologist, to address her worsening bladder control. Mom had tried a local urologist and a local urogynecologist. The urologist hadn’t helped, and the local urogynecologist had spent only a few minutes, taken a (too brief) history, and then ordered a bunch of tests. I found a much better urogynecologist outside of our immediate area. We’d been waiting months for this appointment.
When I brought up the urogynecology appointment, the nice hospice intake lady instant-messaged the hospice nurse practitioner. The nurse practitioner said that she could handle all of Mom’s bladder issues. Therefore, seeing a urogynecologist was not approved.
When I pushed back on the desire to see these two specialists, the hospice lady said that it was important to remember that Mom was now in a different stage. We should be taking a “palliative” approach—meaning that she shouldn’t be looking for cures or aggressive treatments. Well, yes. We were taking a palliative approach. And we also wanted one last chat with one specialist and another chat with a new specialist who had the expertise to improve her bothersome symptoms. We wanted to ensure that she would live her best life for as long as she was alive.
No surprise, things then fell apart. They said that if Mom wanted to see her current doctors, they would allow her to see her primary care doctor—as we were given this news, the hospice intake nurse smiled brightly, saying that this was new, and was driven by the hospice wanting to please their patients.
Well, that brought out my inner curmudgeon. While it would be great to say goodbye to her primary care doctor, he was no substitute for the other specialists—whom she wouldn’t be allowed to see. So, Mom did not start hospice services.
I felt bad about inconveniencing the nice hospice intake lady, but I was annoyed by the attempt to use a clinical argument (that didn’t hold water) when the real issue was the money. I understand that money drives everything, and I’m not here to debate the ethics of the American healthcare system, but at least let’s not pretend.
Four months later, my mother is alive and is now on hospice. The hospice staff are terrific. But I remain happy that I didn’t start my mother’s hospice too early. And I still disagree with that enthusiastic table rep who said that hospice should always be started as soon as possible.
Email me with your questions, comments, or subscription requests at gm@mymdadvisor.com. I’d love to hear from you.
Warmly,
Gerda Maissel, MD, BCPA
Dr. Gerda Maissel, Author
Dr. Maissel is a Board-Certified Physical Medicine and Rehabilitation physician and a Board-Certified Patient Advocate.