I write this blog because I know quite a bit about the healthcare system, as I have been a part of it from many angles over the span of 30 years. There isn’t much that I can’t figure out with a little elbow grease, until this week. This is a bit long, but it is an important story and I hope you will persevere.
Two weeks ago today my dad called and said his buddy, Roger, up here in Minneapolis was just diagnosed with a terminal brain tumor, was in the hospital and my dad asked me if I could help. Roger has no living family and very few (if any true) friends other than my parents. Unfortunately for Roger, my parents left Minneapolis for Phoenix at the end of November and at that time Roger was fine, he said he had been feeling great. After a sudden incident a couple of weeks ago, he found himself half-conscious on the floor in his condo. Medics broke his door down and he was admitted to a local hospital. Roger met the definition of a vulnerable adult – he had no one to fend for him and he was unable to communicate well for the first week in the hospital.
Even though Roger was diagnosed with a terminal brain tumor, of the kind that has never, ever been cured, the hospital went ahead did a craniotomy, one other surgery to keep blot clots from going to his lungs and colonoscopy that I guess nearly killed him. I am going to be interested to understand how consent was obtained for all of this. If you were 80, lived alone, had 1 good friend and a terminal brain tumor would YOU consent to a colonoscopy (let alone all of the other futile things they did to him)? I suspect not.
Upon meeting with Roger two weeks ago today in the hospital I found a mentally intact patient with little trouble expressing himself, who could communicate well enough to have a full conversation, but at times he just couldn’t find the right word. Roger looked like a homeless man, not the fastidious man he had always been. I asked the nurses to please shave him (which even in the ICU we did daily no matter the condition of the patient); he hadn’t been shaved in days if ever since he was admitted, it broke my heart.
Roger gave me permission to review his medical information – the plan was for chemo and radiation and who knows what else. I later found a card in his room from the radiation oncologist. Roger and I had a frank conversation about his wishes and what it came down to is that he wanted to ‘ride off into the sunset’. I told him I would make that happen and be by his side every step of the way. I became Roger’s healthcare Power of Attorney (POA) and we filled out the forms the hospital gave us so that I could act on his behalf when he no longer could. We completed his healthcare directive and he was assured nothing heroic would be done from that point forward. He said he wanted to go to Hospice. I promised him I would make that happen.
On the next day the doctor called to tell me that he spoke with Roger that morning and agreed that Roger did not want any further medical treatment, and that he seemed able to understand everything that was happening (was this a miracle or had they just not bothered to figure this out before I showed up?). He said that Roger’s case would be sent to the ‘ethics committee’ in the morning. I thought that it was a curious time to send his case now, and not right after admission before they started performing lucrative surgeries and tests for a terminal patient. For the next week I went back and forth to the hospital to get papers notarized, bring Roger every beautiful Danish and cookie I could get my hands on and ensure that he was going to have the best possible road to the ‘next side’ pain free and paved with peace. He looked very happy covered in chocolate from head to toe. The nurse and I agreed that dying covered in chocolate would not be a bad way to go. Roger and I had a great week of chatting, laughing and rolling our eyes about our new President and his shenanigans.
We couldn’t get him moved to another level of care quickly as the ethics committee was now deeply involved with his case and I had no way to get access to Roger’s money to pay the cash they would need for a down payment. We were thinking it would be assisted living before hospice, as he seemed to be hanging tough for now. Several times during the week I asked the staff to call me back to let me know how Roger was and in at least 2 cases (in a one week…) I never got a call back.
Thursday night he looked a little tired and I noticed one pupil was bigger than the other and I remarked when I got home that I felt that wasn’t a good sign, but he still seemed really with it. On Friday I got a call from the social worker who was helping to find somewhere for Roger to go, and we had decided that I would move to get financial power of attorney so that I could make a down payment on assisted living for him. She said are you aware there has been a ‘condition change’ and I said no I was not, no one had called me. She said he was very out of it and only awake if you roused him and I panicked, as I didn’t have the financial POA done – so I left work and rushed to the hospital to find the notary and do more paperwork. I sat and cried at the nurse’s station and I said his decline was faster than we all thought. One nurse said “oh I am not surprised” and I said I WAS surprised as I had asked the prognosis more than 5 times and was told it could be 3 months to a year. Her response? “oh the oncologist and neurologist couldn’t agree”. Wonder why…you know the revenue from chemo?
Long story that I won’t go into but at this point I didn’t get access to Roger’s accounts. At this point we knew he needed to go straight to Hospice and we started to work on that plan. After a lot of gnashing of teeth, everything was set for Roger to be transferred to Hospice Saturday morning at 9:30 AM. I was thrilled.
Friday night I got a call from the Hospice at 9:20 PM saying that Roger could not be transferred to Hospice and would likely have to stay in the hospital (and die there) because the form they had me fill out was missing ONE piece of critical direction – that I would have responsibility for Roger’s body after death. I was incredulous. I just completely broke down in tears and said I felt like everyone was more interested in making sure they got paid that making sure a man’s dying wishes were followed. She said they would have taken him regardless of his ability to pay, but she said there was no way he could come without the missing directive. At this point I wasn’t sure Roger would be capable of notarizing this missing tidbit. I was beside myself.
Saturday morning I woke up and decided I was NOT going to let Roger die in the hospital, shabbily shaved in a hospital gown – I could not live with that outcome for this sweet old guy. I was on a tear. The social worker was willing to help and found a notary in the hospital who then refused to notarize this one missing tidbit – even though I had POA and every other power I needed. I broke down into tears again – I asked if there wasn’t someone else there who could notarize for us and did this person know that the only thing this signature was authorizing was the ability for us to move this patient to Hospice. Yes, she knew that. She said the hospital doesn’t always have a notary on over the weekend. I thought I was doomed, lest for the fast thinking of friends. I went online to find a mobile notary and for $50 this guy would drive over to the hospital and notarize this tiny tidbit for me. This was after probably 30 calls between the Hospice, the social worker and me. My nerves were frayed, my eyes swollen and I knew this was my last hope to get him moved. If you aren’t familiar with Hospice you won’t understand how important this was to me to get him moved, but hold on for a minute and you will see.
The notary texted me and said the job was done! I called the hospital and the social worker was thrilled – Roger had a ride to Hospice at 4pm that day! Next thing I heard Roger was in Hospice had already had a bath, a close shave, a backrub, a foot massage, tater tot hot dish and an ice cream sandwich. THIS is why I fought – I promised Roger I would take care of him and make sure he was comfortable and I cried…again, but this time in relief. Roger was comfortable and eating treats and I was felt ten tons of weight lift.
Over the next few days Roger started his transition to the other side, but he was clean and comfortable and loved. His last meal was a chocolate Glam Doll doughnut I brought him, and an ice cream sundae.
I visited Roger yesterday morning early and whispered in his ear that he could feel free to let go now, that I had taken care of everything and that he didn’t need to fight anymore. I told him “Roger, this is your time to ride off into the sunset, it is time to go”. I left thinking I would come back and see him the next day. I was just getting close to home when Hospice called and said Roger had just passed at 9:05. I left him at 8:57. More tears, but relief. The nurse said she saw him just take one big last breath, and that was it. Peaceful. Comfortable.
I have never been so frustrated with our system. In a nutshell what is wrong? How about an ethics review BEFORE you start making money performing expensive futile surgeries and inflicting pain on a vulnerable person? How can a hospital not have a notary available 24/7 who understands the importance of the role they play in the care of their patients? How can the staff not know what paperwork is needed in order to ensure a patient can move to Hospice – can’t they just have a folder of papers ready to go labeled ‘what you need for Hospice transfer’? How about a shave for a man so they don’t have to look homeless and have an itchy face while dying?
I am exhausted, frustrated and thankful that I don’t give up easily. Roger was my best friend for 2 weeks and he left the world just the way he wanted. But let me ask you, if this were you in this situation, what would have happened? Chemo and radiation? More surgery? Remember the term ‘lucrative patient’ from my earlier blog, does that seem fitting here? I am embarrassed for my profession, my field and the entire system. We spend billions on systems and talk, talk, talk about what patients want and need and this is what we have to show for it? No wonder the cost of care and insurance is so high. In this case I could have saved probably close to $100,000 and ensured that Roger got exactly what he wanted, a peaceful and calm exit. Shame on this whole mess. WE MUST DO BETTER. We need to stop talking and focusing on how much money we can make and start to begin to take care of patients again. Our entire system has lost its way.