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carol567 Asked August 2016

How can I get my sister's hospital and hospice records?

When she was discharged from the ICU unit of the hospital, he told me she was going to a nursing home. He then told me the doctor suggested she go to a hospice so as not to prolong her suffering. She made it very clear that she wanted to be resuscitated if the time came. She was fully awake and aware when she went to the hospice. He told her she was not in a hospice but a nursing home. She had COPD, used oxygen, and had a modular that dispensed medicine to her. When she went to the hospice, all of her medicine was discontinued, she was not given food or water. And, eventually, her oxygen was discontinued. She was given morphine and within two days, she was comatose. When I asked the nurse if she was in a coma, she told me, "No." When my brother asked, she told him to ask her husband because she would get in trouble if she gave out information. I just want to know what her condition was and how long they gave her to live. I want to see the records so I can get some closure for myself. I can't ask my brother in law, because he does not tell the truth. Thanks

carol567 Aug 2016
Thank you everyone. I appreciate your feed back.

jeannegibbs Aug 2016
The "six month" judgement is not a prognosis. It doesn't mean the person has been given the medical opinion of having six more months to live. It means the doctor judges that persons in this condition/situation typically don't live longer than six months.

My husband lived 5 weeks on hospice. My best friend's husband lived 3 weeks. My mother lived 3 months on hospice and then was discharged because she improved and was no longer considered likely to die within a few months. (She is still with us 2 years later.)

Death comes on its schedule.

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pamstegma Aug 2016
carol567, it sounds like she didn't even want her husband to know it was Hospice either. She had that right to refuse further treatment and sign the papers, even if all of you didn't like it. Six months of dialysis would have been hellish at best.

freqflyer Aug 2016
carol, I was just thinking of something else, family dynamics when it comes to serious illnesses.

My Mom's side of the family was so very hush hush whenever someone became seriously ill, even my parents didn't tell me when they themselves had cancer issues. Couple years ago I took my Mom to a doctor appointment and the doctor asked me what was the status of my Mom's bladder cancer.... her what??? That was the first time I ever heard about it. But in turn, I never told my parents about my bout with cancer.

So, Carol, I wonder if your sister didn't want the family to know how serious her COPD had become, or if there was another serious medical issue going on that had taken her life.

jeannegibbs Aug 2016
My mother was in a nursing home. She went to the hospital. They recommended hospice care. She went back to the nursing home. I signed the papers to allow hospice to come in and take charge of her care. Mom recovered and has been there two years. I have since seen other residents who were placed on hospice care right in their same rooms.

As CM says, the distinction between "hospice" and "nursing home" may not be based on a building or location; it is the kind of care provided. So whether the ambulance was to take her to "hospice" or "nursing home" they may very well have arrived at the same location.

Somebody signed for your sister to be given hospice care. Providers like to get paid, and they need signatures to get paid by Medicare. I imagine it was her husband.

I once asked for and read through my own medical records, looking for medications that had been tried over a period of time, including a hospitalization. I doubt very much you are going to find the kind of information you are looking for, but I think a lawyer could facilitate your seeing them. There is certainly all kinds of information in there, but not necessarily a frequently updated prognosis.

I hope you can come to a sense of closure. I am so sorry that you lost your dear sister.

Countrymouse Aug 2016
I'm sorry for your loss of your sister.

I am concerned that you are hoping for black-and-white answers to shades-of-grey questions. For example, you seem to have in mind a starkly clear distinction between hospice and nursing homes, between hospice and palliative care, which is not the reality. Hospice or palliative care can be provided in nursing homes. It isn't reasonable to expect your brother in law, at this distressing time, to have been so punctilious about his choice of words.

Similarly, your expectations of there being, somewhere, a written prognosis seems unrealistic. Nobody is going to have put a number on it. It doesn't work like that.

Your poor sister was suffering from end-stage COPD. Her kidneys were failing. She was already sufficiently ill to have been admitted to ICU - a drastic step, which will have put her through extremely aggressive medical interventions. There comes a point in these chronic diseases when the measures required to keep somebody alive are so extreme in themselves that they become cruel. And they are futile. They will not prolong natural life, only maintain bodily functions in a person whose real body is dying.

Your sister was a fighter: she wanted to live. But the potential extra six months you want to know about... those almost certainly would not have been the kind of six months you're thinking of, the kind that anybody would want to live through.

Now that she has passed away, you could, couldn't you, ask your BIL for sight of her medical records? Tell him you want to understand what happened and the records would set events out clearly and factually for you. It may be that he would welcome the opportunity to put an end to your suspicions of him, and be relieved to share them.

carol567 Aug 2016
No, my sister did not sign the hospice papers. As a matter of fact, when the ambulette came to take her to the hospice, my brother in law called me to tell me he sent them back because they mentioned hospice. He said he told them it must be a mix up. He didn't want her to know she was going to a hospice. My niece told me when her mother asked him if she was in a hospice, he told her no. The hospice also had a nursing home that he told us she was going to after she left the hospice. There was a meeting at the hospital she was in that I was invited to just before she went to hospice. At no time did they mention hospice. They discussed that she might need dialysis in the future because one of the medicines she was taking had affected her kidney. Her husband, daughter and myself were at that meeting. There is nothing I can do about this, nor do I want to. She is already gone. I just need to know what her prognosis was. How long had they given her to live. If it was six months, she would have wanted those six months.Thanks freqflyer for the advice of a lawyer. I am willing to pay for my peace of mind.

freqflyer Aug 2016
Carol, I remember your post https://www.agingcare.com/discussions/did-hospice-rush-your-loved-ones-death-162802.htm?cpage=86

My sig other's wife had COPD, was on oxygen, and at least once a month they would go to the ER because she couldn't breathe. The last ER visit was her final one as she passed that day even with the ER staff trying to resuscitate her. He has said over and over he never realized how sick she was.

The only way you can get your sister's hospital and hospice record is if your name was on the HIPAA paperwork which lets the hospital know who is allowed to view same. You had mentioned the other day of hiring an attorney, said attorney can get the records.

As I had mentioned previously, food and water is no longer given if the patient cannot process the food or water. It could wind up in the lungs.

pamstegma Aug 2016
Your sister signed the hospice papers herself. The doctors signed papers stating she had less than six months, with copies of test results to prove it. She was interviewed by an RN to be sure this is what she wanted. She made a decision to go, but she lied to you to make you feel better. If she wanted you to see her records, she would have added you to the list of people who can see her records. She did not. You cannot get the records; that was her decision.

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