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Get a handle on your loved one's medical team
How I gave my brother 3 extra months of life at home with his family!
Most family members are at a loss when their mom’s, dad’s, brother’s, wife’s, medical team doesn’t make sense. And most of them don’t know where to begin intervening. Nearly all put their trust in the care givers having no other alternative.
I want you to be able to take things into your own hands and insist your family member gets what they want from the last days of their lives.
In case 1. My brother wanted to die at home! In case 2. my wife wanted to “Live without fear!
Turn that into a treatment plan and you can be proud of what you all accomplished.
My 68 year old brother died at home, not in the hospital, enjoying his wife, kids, grand children and friends for three extra months.
Here’s what I learned that you can do too:
First, I had a bit of an edge. I’ve consulted with healthcare leadership of all types of care, home care, hospice, medical centers, insurers, and health systems for over 30 years. I learned what moves the system as well as what drives individual care givers. But even with this edge, I had to improvise, not accept the status quo.
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Rather than looking from on high consulting with Senior Management or the Hospital Board of Directors, like you perhaps, I was in the belly of the beast.
My brother called me at my campsite late in the day saying, “This is it! Brain tumors. Brain surgery!” He had had manageable lung cancer that now was in his brain.
The family call asked all of us to hurry back home to say goodbye before he passed. And so I did.
When I got to the hospital all I heard from everyone was, “his body is giving up.” That’s it. Neither his son nor his wife nor anyone else knew why he was “failing” other than that he got sepsis in a Step Down Rehab Hospital, post brain surgery. Sadly post operative infections aren’t rare. No body knows or will admit where it came from. His readmission came with edema, kidney failure, heart failure, sepsis, cancer, and more. He was 68 yo.
Like a good brother I said goodbye as did his whole family, 15 in all planted in his hospital room. The next day, surprise, he’s alive!
I waited three days watching every hospitalist, palliative care manager, nurses, cardiologists, kidney doctors, and more, each entering as if they hadn’t read the chart, introducing themselves, and asking, “So what seems to be the problem?”
My brother’s wife was like a deer in the headlights, not understanding why or if he was dying. Finally I asked the direct question to which she responded, “they just want him to die.” Indeed that seemed to be the plan as far as I could see. “He’s just giving up,” they all repeated like a mantra.
Finally the entire family confronted the most consistent hospitalist, the hospital’s doctor in charge of his case. Just as his son, my nephew blurted out, “so, am I to understand that your refusing care for my father?” I took charge.
“Doctor, you can see how upset everyone is! I need information and none of us will engage in the next day’s clinical team planning meeting until I get it.” Since the nurse searching the Electronic Medical Record could only pull up clinical indicators one shift at a time,” I now demanded all of the date on key indicators of my brother’s health, lab results, weights, fluid intake and output, and more.
I sat with the data, created trend charts on every key indicator of his medical condition, and concluded that my brother was not dying, at least not now.
Eventually he would succumb to his cancer, but every indicator showed steady improvement since his admission two weeks earlier, every one!
I went to the nurse on shift and showed her the measurements and said, “my brother’s not dying, is he? Not now.” “Oh no!” She responded nonchalantly.
I met with the family, shared the findings, and announced a new plan: round the clock family observation in the hospital room, consultation with each specialist clarifying that my analysis was correct,
… and the final part of the plan… Get my brother home before this hospital killed him!
In order to go home, my brother had to maintain blood oxygen levels on the low dose O2, a criteria for Homecare. In the middle of the last night before discharge, my nephew intercepted a lab tech trying to put the high flow O2 mask on my brother, believing she was following orders… old orders, that is. Now empowered, my brother’s son said, “oh no you don’t!” She left and wasn’t heard from again.
We got my brother home that morning, which also took micromanagement by me, not only of the hospital bureaucrats but of the entire Homecare team from medical supply company to nurses, from getting a proper commode to prevent a crisis waking my brother across the house to his bathroom, to getting the floor model of a home retirement sofa chair which would lift him up high enough to stand on his own. That was a fun negotiation with Bernie and Phil’s. every other one was a knock down drag out fight ending with my demand to talk with the highest level of leadership of each provider of materials, equipment, and care.
Lesson 1. Most family members and indeed the patient themselves don’t want to upset anyone on the care team for fear they would abandon him or her. So … get someone else to make the waves for him or her.
I’ll go into the details of the screw ups in the entire system of care as well as my $100,000 report to the hospital CEO afterwards detailing the failed systems in his hospital. That got a cursory “thank you but” response.
The upshot? We got my brother home. He lived lived three months longer than planned, at home, every malady cleared up, walking on his own, and eating dinners at the kitchen table with his family.
He ultimately died, likely of liver failure from his spreading cancer, painlessly and peacefully. He got a three month reprieve from the grim reaper surrounded by grandchildren and friends.
Lesson 2. Families often need help from someone who knows the system, someone who can translate for the family, and intervene with the care givers. Most families don’t have that resource and children of elders, especially living far away, need that support to help their parent through the ordeal and do the right thing so as not to be left with the guilt that they hadn’t done everything they could.
Lesson 3. Care givers are all overwhelmed by their case load. The days of the kind, considerate, Dr. Markus Welby are long gone. The system responds to the loudest family member who insists on being talked to in plain English.
In summary, families have to have a spokesperson, hired advisor or trusted confident family member. They should never assume that everyone on the care team has the same vision for care nor the same marching orders. Firmly but confidently the family must take charge of the care team. This person must ask the questions that are on everyone’s mind and question the plan if something doesn’t sound right. Everyone must know exactly how the patient wants to live albeit under the care of a clinical team, and be committed to ensuring that his or her wishes are central in the care plan. And finally, someone must be willing to take charge in the best interest of the patient, not making clinical decisions but keeping everyone involved knowledgeable and capable of carrying out the plan.
Living as well as one can until the end IS the goal! And ultimately it’s about everyone feeling proud that they all did the best they could for their mother, father, brother, wife or other.
Case 2. My Wife Fought to live well with Ovarian Cancer for 5 years “To live without fear,” was her goal, written for her care team by me. I made sure she had the chance to do just that.
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