Jim’s Notebook: Remembering Mom and What Her Experience Means for Hospices

I just returned from a voyage to Iceland and the Faroe Islands, and it was amazing. They are such incredibly beautiful places. I saw mountains, waterfalls, whales, seals, dolphins, puffins, Viking historical sites, glorious works of art and much more. The picture you see above is one I took of a lovely sunset off the coast.

But today what I really want to talk about is my mom. August 9 was the third anniversary of her death at 82. It’s hard to believe that it’s been three years already. It feels like it was yesterday.

I want to write about mom to honor her, but also because I believe her experience is emblematic of what many seniors go through in our health care system, particularly as they near the end of life. Moreover, I think hospices could learn from some of what she went through.

Her final illness began after a routine pacemaker installation procedure. Sadly, the pacemaker she received was contaminated with MRSA. This devastated her health. Just a couple of months prior she had travelled to Vienna, Austria, and had walked its streets and sites for hours. She had been in robust health. But after a bout with this infection, she was confined to a wheelchair, unable to walk, very frail and in tremendous pain.

Efforts to treat the infection were delayed because of a disagreement between two specialist physicians on the right course of action. The disagreement was communicated via physician notes in clinical documentation. When I proposed that the two doctors actually speak to each other to resolve this, they refused to do so. That kind of direct communication was outside of their protocols, you see. Also, they each worked different hours and were never around at the same time.

Eventually the pacemaker was removed, but the device pocket in her chest wasn’t properly sealed, which led to internal bleeding, a surgical site infection and a second procedure.

This was the beginning of eight months of her suffering through repeated hospitalizations, surgeries and skilled nursing facility stays. At one such facility, my father had to call the police because a staff member had thrown an object at my mother while she was lying in her bed.

At no time was her pain controlled. Her constipation got so bad that it caused fissures in her bowel. The family pleaded with the SNF and later, again, the hospital to give her something beyond a stool softener. But that wasn’t their protocol. She also contracted a catheter-associated urinary tract infection (CAUTI). Requests for palliative care were met with apparent incredulity, so she received none.

The number of things that went wrong with her health care are seriously too many to list, but I will mention just a couple more. For one, she had a stroke while waiting for treatment in a hospital emergency department and didn’t undergo any kind of imaging for 28 hours.

Also, days before her death a hospital pulmonologist declared that her lungs were clear and that she was ready for discharge. We took her directly from there to another hospital where she was diagnosed with double pneumonia. Two days later, her heart gave out and she died.

I want to highlight two particular incidents that occurred during this ordeal.

My mom never gave up hope and, though it never happened, she was determined to walk again. This meant she would need to go to a rehab hospital. However, her Medicare Advantage plan denied the prior authorization.

I filed an appeal. As I did so, my thoughts dwelled on all the families going through similar events who might be less knowledgeable about the healthcare system. What happens to them? Do most people know how to file an appeal with an MA plan, for example? Or do they just accept their insurance company’s decisions, believing they have no choice?

When I filed the appeal, I did describe her condition and the ways she was suffering. But the point I tried to drive home the hardest was this: If she didn’t receive rehab care, she would continue to have multiple hospitalizations and ultimately need a nursing home admission. The message I tried to send was that denying the care would cost the MA plan more money in the long run.

And it worked. They reversed the denial.

Of course, I can’t be certain that a different approach would have failed. But the situation reinforced for me a difficult lesson about the U.S. healthcare system. While the toll of a patient’s suffering might be extreme and escalating – and naturally might be what an advocate for that patient is moved to highlight in discussions or negotiations with payers or providers – that is not necessarily the most effective approach.

Hospices should take heed of this because when they go to work with insurers, particularly those outside of traditional Medicare, they will have to send the exact same message. They need to make the case that their services will reduce the patient’s health care spend and save the insurer some dollars. Simply saying that the patient needs help isn’t going to cut it.

Case in point: In an interview I did a little more than 20 years ago, one insurance executive looked me in the face and said, “I don’t care about lives saved. I care about dollars saved.”

That conversation happened a long time ago, so one would hope that attitudes and leadership might have changed. But has it?

Also, you may have noticed that in my recounting of my mom’s healthcare journey, I didn’t use the word “hospice.” She suffered and died without the benefit of hospice.

The subject of hospice came up only once. Her physician listed several options we could pursue, and at the end she said, “There’s always hospice. They provide many great services.” That was it.

So I asked, “Are you saying that she is terminally ill?”

The doctor dodged the question. She just started talking about something else.

I asked again, “Do you think she has a six-month terminal prognosis?”

The doctor again ignored the question.

My third question was, “Are you saying that she won’t benefit from these other treatment options?”

The doctor had to go and get off the call. We were left confused, frightened and completely unsure of what to do next.

I have to ask: How many patients miss out on the person-centered, comfort-focused interdisciplinary care at the end of life because their health care providers don’t know how to have these kinds of conversations?

How many more people could hospices help if upstream providers could talk openly about the prospect of death?

I’d like to hear from you. What points does your hospice emphasize when communicating with payers? How can we foster better communication with families about the end of life?