Turning Down Patients for Hospice Care
I'm particularly frustrated today because I'm batting 0 for 3 this weekend. I saw a patient Friday evening who was 92 years old, had severe dementia, and was bed bound with contractures in his legs and hands. His son had been trying to get him hospice care for the past 1 1/2 years but he's never quite met the hospice criteria for admission because he's "eating too much", even though he's a gaunt 5'7" and 110 pounds. Instead, the patient's son is forced to call 911 to get any care in an emergency situation and the patient has to endure hospitalizations for things that a hospice team could easily treat at home.
Another patient I saw on Friday had esophageal cancer that had spread to his bones before even being diagnosed. He underwent 10 palliative radiation treatments on his lumbar spine to prevent spinal cord compression and had completed two rounds of chemotherapy. He was in a great deal of pain which was being conservatively managed by his oncologist with less than optimal drugs. He wanted the expert pain and symptom management of a hospice team and access to Methadone for pain relief but also wanted to continue chemotherapy treatments until there was any clear evidence whether it was working or not. Again, I had to deny him hospice admission because his Medicaid wouldn't pay for both hospice and chemotherapy at the same time.
The third patient had COPD and was oxygen dependent for the past six years. This past year alone she had a pacemaker placed, a heart attack with three stents placed in her heart, two hospitalizations for gallstones that couldn't be surgically treated because of her other health issues, and yet another hospitalization for diarrhea and vomiting that lead to pneumonia - likely from fluid overload secondary to I.V. fluids. She wanted to avoid hospitals and be treated conservatively in her home but because her COPD wasn't severe enough according to Medicare, I had to turn her down too.
Most hospice professionals you talk to will express some frustration over this problem. Patients want hospice care, which we know saves Medicare and Medicaid thousands of dollars per patient, but Medicare's guidelines prevent them from accessing it. Some will say a universal health plan will solve the problem, others will say privately funded (meaning through donations to non-profit agencies) community palliative care programs are the answer. I think physician education could go a long way - all physicians should be adequately trained in pain and symptom management.
I'm still not sure what the best answer is but I know that something needs to change. As our baby boomers continue to age, they will be demanding expert pain and symptom management at the same time as they are receiving the aggressive treatments our modern medicine has to offer. This is a smart generation who wants it all and rightly so. No one should be forced to make the decision to be miserable and in pain while they continue aggressive treatments or to give up those aggressive treatments just to have access to adequate pain control.
If you think you know the answer to this dilemma, have similar frustrations, or totally disagree with me altogether I'd love to hear what you have to say.
Comments
Just wanted to know if you are using the Medicare guidelines and if you are including comorbidities in your presenting cases as all your cases/patients do sound very appropriate.
11-year veteran in the field – full time
Yes, the Medicare guidelines were followed carefully. The first patient with dementia did not qualify under a dementia diagnosis because he was speaking more than 7 intelligible words and was eating pretty well with only mild dysphagia and no history of aspiration PNA or any other recurrent infections. We are monitoring him closely for any weight loss, in which case he would qualify for decline in health status.
The second patient with esophageal cancer certainly met the criteria but wanted to continue with chemotherapy. Because Medicaid won’t pay for chemotherapy and hospice at the same time, we had to turn him down.
The third patient had COPD but was still ambulatory with only mild dyspnea on exertion and no dyspnea at rest. She was relatively independent in her ADL’s and hadn’t experienced any lasting physical decline. She was a strong woman with a knack to “bounce back” to baseline after any illness, even an MI!
How in the world can you tell a dieing person that because they want to live 1 more month or 1 more day by using Chemo that they are ineligible to have hospice care? I know a sweet man who has been a quadrapligic since he was 19 and he is now 53. He was just placed in a nursing home ((dive)) this evening because his medicare would no longer allow him to stay in the hospital. He underwent an 8 hour radical surgery 2 weeks ago to take out his Cancerous bladder, urethra, prostate, failed kidneys, lymph, received a colostomy and the cancer has spread to his abdomen and there is a mass in his colon. He was not eligible for Chemo because of his declining cancerous condition and 6 – 12 week prognosis. But now the doctors are saying if you want to live a little longer than we will put you on Chemo (lowest dose)possible and see how much longer you will live. UUUUUUUUgh!
NOW this poor man is in a nursing home with unbelieveable bed sores, in a crank bed that he can’t get comfortable in and all he wants to do is go HOME. His parents are in their late 80’s, his father has Alzheimers and his mother has unbelieveable spinal degeneration. And because there are no beds available in any other nursing home then he will have to lay there in pain and rotting bed sores listening to a woman screaming across the hallway for someone to pay attention to her cries for help. Where do I sign up to say enough is enough? Who is going to listen? How loudly can we all scream at the same time?
My mother is in a nursing home, has alzheimers and was just put on hospice. SHe still eats, looks healthy, but her lab work is looking not so good. Could that be why they admitted her? Maybe you could request lab work on your 92 year old man.
Sometimes lab results such as a low albumin level can be great supporting evidence for a hospice diagnosis. Low albumin is indicative of poor nutrition and physical decline. The patient I described above actually had a normal albumin level. Other than being mildly anemic and having a UTI, this guys lab results were pretty typical of a 92 year old.
My mom has been on hospice 8 months with a dx of Alz and COPD and lives in an assisted living facility. At 6 months, she broke her hip and the oxygen has helped her a bit plus a full time aid to feed and assist her in slowly walking a few feet. Hospice is now pulling out (including the CO2 and all the equipment) because her vitals are better. We have to also stop the full time aid at $17K a month that mom has paid for. Can you advise me at all? Should I protest knowing I may need them in a few days or months again? I have no one to ask and feel utterly helpless. I cannot understand it: she qualified for hospice, then broke her hip, is now on oxygen, needs a full time caregiver to prevent falling that we now cannot afford and hospice is pulling out?
My mother was an alcoholic with liver failer. During the last 6 months of life I knew she wasn’t going to make it much longer and tried to arrange DNR and get Hospice lined up. For the last year of life she was abondoned by her doctors. They simply ignored our calls…refused to called us back. We even threw money their direction…donating big bucks to the hospital…giving free passes to high dollar golf courses…you name it. But even money couldn’t buy proper care. The family was at a loss…we had no idea what to do with the woman who was now unable to walk, had bed sours and in dypers. The only care we could find was calling 911 and having her sent to the emergency room to be put on a feeding tube and “stabelized.” In the end the emergency room finally managed to toss us a really bad doctor to take on her case but I don’t think he knew what he was doing. In fact, a nurse friend of mine told me he was an OBGYN…not a liver doctor. But still…her chart read that only five percent of her liver was functiong…I’m no expert but duhhh. Again, when she would spit up her food and shrink in size we had no choice but to call 911 where we would sit in the emergency room for hours (her laying on the floor) until they had time to admit her and then of course they would feed tube her up to stableized again. This happend 15 times. About once every 10 days. All the while I begged for DNR and Hospice. Never got the ok until the night before her death. (The hospice worker didn’t actually come to the house with the pain meds until 11pm) She was in pain, HATED the feeding tube, Wanted to go home. In fact her last coherent word to me was during her last few hours in the hospital when she simply groaned “hooommmmeee. To this day I am angry about the pain she had to go threw unecessarily. In fact, if I had this all to do again I simply would not of called the hospital. Just let her stay home and dye in her own bed where she belonged.
Mom is a late stage (7) alzheimer’s patient…bedridden, suffers total incontinence, food has to be pureed to keep from choking…utters words sporadically…has been on hospice 9mos…at this time, they say she will be reevaluated Friday for possible dismissal from hospice services…she consumes her pureed food and drinks, and they believe that is a plus…I am told that bloodwork will be taken for this evaluation…seems cruel taking this support away at this time…