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Life Support Issues/COPD & ARDS & level of care criteria

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Question
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.

Answer
Tamara,

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.  

Life Support Issues

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Betsy Murphy

Expertise

My expertise is in end of life care for adults. Identifying when someone is approaching the end of their life. Benefits and burdens of end of life treatments. Managing pain and other symptoms. Providing care for dying patients at home. Advocating for someone who is dying in a hospital or nursing home.

Experience

More than 28 years of experience in hospice care. Currently consulting with hospices to promote access for patients to receive hospice care earlier in the course of their illness. Betsy provides training for hospice marketing staff to effectively work with nursing facilities to help identify eligible patients. She writes Additional Development Request (ADR) letters to Medicare to help hospices get paid for their services and to avoid future claim denials.

Organizations
Hospice and Palliative Nurses Association

Publications
Articles: Clinical Reviews, Advance for Nurses, Nursing Spectrum, Washington Business Woman, www.Ezine.com;www.alz-nca.com.Books: Understanding Medical-Surgical Nursing (FA Davis and Company), Guide to Caregiving in the Final Months of Life (TM Brown publishers).

Education/Credentials
Bachelors of Science in Nursing, additionally trained as a Family Nurse Practitioner and certified as a hospice and palliative care nurse.

Awards and Honors
Outstanding Woman in Loudoun County (VA) by Loudoun County Commission on Women 1997 and 2002.

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