Life Support Issues/COPD & ARDS & level of care criteria
Hello and thanks for taking my question.
My mom is 77 years old & fell breaking a hip 2 months ago. This exacerbated her stage 4 COPD, CHF and Cancer that had been managed but was inoperable & had metastasized. Since the hip replacement she's had three respitatory failure events - one from pulmonary edema, one from pneumonia and one undetermined. We are currently on INpatient hospice & she has continued to have more exacerbations but the morphine has helped. The provider wants to move us to home hospice. The problem is that they can not offer 24/7 nursing care and mom refuses or panics sometimes when morphine is offered. She is agitated & delusional at times also. I have seen other family pass with COPD but it did not look like this where she goes from stable to crashing in four minutes. The home hospice can not get a nurse to my home in four minutes. They can not offer 24/7 care when she is stable. I think my mom also has ARDS Acute Respiratory Distress Syndrome - she fits the criteria. Her doc says she doesn't.
Is it possible she could have both? Would that meet criteria for inpatient hospice? I cry & panic at the thought of managing her at home by myself. Thank you.
I am sorry about your mothers decline. I will answer several questions here.
Respiratory Failure is the inability to breathe on ones own without support. ARDS is a specific type of respiratory failure and needs to meet 4 very specific criteria. In the end it does not matter much what type of respiratory failure she has. She clearly has respiratory failure with panic episodes , agitation and mental status changes which I agree is a very frightening experience for her family.
Patients qualify for inpatient hospice care when they have "uncontrolled symptoms that cannot be managed in another setting." The hospice is trying to meet this criteria, so when she stabilizes, they have to try and discharge her home-or to a lower level of care like a nursing home. She sounds very unstable and when she refuses Morphine, it makes her symptoms worse. Patients in her panicked state do not always make the best decisions. They want to "feel better" but become paranoid and think the medicine is making it worse. The Morphine, given on a schedule is the solution! If she got it every 3 or 4 hours routinely it may abort the panic episodes. I do not believe that she will live very long in this state.
So now, what are your options at this juncture?
1) You can take her home and give the Morphine regularly. Hospice provides 24 hours on call service so the nurse is only a phone call away. I suspect she will not be at home for long as her symptoms will again worsen. Then she again meets inpatient criteria and can go back to inpatient care. You can hire private help to be with you at home. It is worth the money and you will not need them for a long time.
2) You can ask the hospice if your mother can privately pay to stay on the hospice unit. She will not need to meet any criteria if Medicare is not being billed. When she has an exacerbation of her respiratory distress, and she again meets criteria, they can change the payment source to Medicare. This seems a good option as it involves moving her around less.
3) You can ask for a transfer to a nursing home for her. This again will cost some money but I don't think she will be with us very long.
I agree that watching someone who is in respiratory distress is very ,very difficult. Where nurses in a facility are able to get her to take medications, sometimes they will not do this for family. That puts you in a very difficult position. I completely understand why you would not want to be the sole caregiver.
Ask to speak with the hospice social worker on the inpatient unit to explore options.
I hope that your mothers final days are peaceful for both of you.