My daughter died 108 days ago at HCA HealthOne Swedish Medical Center in Denver. She had been hospitalized for close to a month. The time we spent at the hospital was horrible. How could it not be? We were confronting the most traumatic loss my family had ever faced. My daughter was dying…at the age of forty. This loss was unbearable, and yet there was no choice but to bear it.

Aside from Jessica dying, there were other issues during her stay that were deeply distressing for myself and my family. First, the hospital lost her phone. That may seem insignificant, but when your daughter is at the end of her life and the hospital is cavalierly disregarding your loss, it’s infuriating. Staff assured us, more than once, they would replace the phone…because they lost it. They never did. My daughter, Amy, contacted the hospital administration and the board of directors about the situation to no end.

Now you may think that because my daughter died it doesn’t matter. But you’d be wrong. The phone was hers. Hers while she was alive and hers to decide who she wanted to have it after her death. It was Jessica’s property and when she died it became ours, along with all her other belongings. You know who it never belonged to? Swedish Medical Center. How dare they decide that they didn’t need to rectify their mistake…that they didn’t need to honor their promise and, my daughter, by replacing her phone. In the weeks before I went to Denver, to be with my family, I lost my ability to talk to my daughter because her phone was gone. She wouldn’t answer the hospital phone. And here’s the thing, she didn’t need to because she had a fucking phone. My family struggled to notify her friends after her death because we didn’t have her phone with the contact information.

Second, it was hard to get honest, straightforward information from the hospital doctor. My daughter, Amy, noticed on a medical form, handed to us during a room change, that her sister had cirrhosis of the liver. That is end stage liver failure…but no one told us. She had been in Swedish Medical Center four weeks earlier and there was no mention of cirrhosis to her or in her discharge paperwork. That’s a huge oversight…perhaps negligent.

Every day I asked the doctor if my daughter was going to recover. And all I got was a list of the problems caused by the liver failure, the additional tests she needed, and the new medications they were giving her. It wasn’t until I backed the doctor into a corner, figuratively, that she said…and I quote, “I don’t think she’ll die today.” My daughter died the next day.

Even after that response, the doctor wanted to put a tube down my daughter’s nose and throat to give her another medication. And because Jessica was uncomfortable and couldn’t lay still, they would need to restrain her. That was my breaking point. I burst into tears and told them absolutely not. They were not going to tie her to the fucking bed. I’m no doctor but it was clear she was dying. Why put her through that…what was the point?

I told the doctor I wanted my daughter to be comfortable and without pain. No more tests. No more trying to give her medication by mouth because she couldn’t swallow anything…which they should have known. Why did they not know that? Why did I have to tell them? And why did I have to demand pain medication at all? The doctor kept telling me that Jessica wasn’t in pain. I insisted on pain medication the previous day because she had been crying and in obvious pain. I told her that I knew if she was in pain…I’m her mom. She needed IV pain medicine.

After that conversation, the doctor offered us the option of hospice services. She said they could be at home or in the hospital, but her recommendation was in-hospital. We agreed. After the decision was made a hospice worker came, introduced herself and explained what was going to happen and how their services worked. The next morning, January 2nd, a hospital social worker came to my daughter’s room to talk to us…. Remember, my daughter is dying in the bed beside me…the social worker told us that Jessica’s death was “not imminent enough” and so they were discharging her. WTF! So, after finding out that imminent meant within three days, I asked where she was supposed to go? The social worker said she needed to go home with one of us or to a skilled nursing facility…and with that speech bubble still hanging in the air…she added that a facility would be expensive, Medicaid would not pay for it, and we could not afford it. Nice.

I was sobbing and my daughter, Amy, was trying to talk to them. I’m gonna shorten this story for you…we insisted they get the doctor because the social worker said the doctor made the determination that my daughter’s death was not imminent enough. When the doctor came in, I reminded her that she told me the day before that she didn’t think Jessica would die that day…but clearly, she was dying. In what world does that not indicate an imminent death. I spent the previous night at the hospital because I wasn’t sure she’d make it until the morning. I did not want her to be alone. All anyone had to do was look at my daughter to see her death would be very soon. We argued with the doctor until she agreed that Jessica’s death was imminent and she stayed at the hospital. It didn’t seem to matter that we had nowhere we could have taken her. My daughter died that night, January 2nd. About eleven hours after they wanted to discharge her.

The issue for me is that the hospital took the most horrific time in our lives and made it so much worse. I was barely holding on as it was but then I had to convince the doctor my daughter was going to die right away. I had to argue for my daughter’s death…to persuade the doctor that my daughter would die at any moment…what mom should have to do that. No one should ever be in that position. Ever. And now I am reliving those moments, conversation by conversation, in an attempt to elicit integrity and compassion from this hospital.

The hospital’s response to all of this was to blame hospice. To say that they have no control over a hospice agency’s decision to accept a patient for in-hospital care…basically they threw them under the bus. Although factually true, it is not relevant here. Hospice accepted my daughter for in-hospital services at once and without question. Aside from the nurses, who were compassionate and kind, the only positive experience we had at Swedish was working with hospice…and they are an independent agency. Not part of Swedish at all. They still contact me regularly to see if I need anything. I have heard nothing from Swedish Medical Center. No condolences. No acknowledgment. Nothing.

If you are reading this and you live in the Denver metro area, please share this post with everyone you know. At the end of my blogs, I always say that in the end all that matters is how we love people. I love my daughter so much…and I love my family. Sometimes loving means not letting something go. Continuing to fight for someone who can’t fight for herself. I will not allow my daughter to be disregarded or treated as though she was insignificant. Her life had meaning…she was an important person. She was so important to us, and she should be important to Swedish Medical Center. After all they are in the business of caring for people…or so they say.

Swedish administrators, it is time to get your shit together and do a better job. Do more. Care more. Be better. From my perspective you can only go up from here. Start by replacing my daughter’s phone. Then learn how to deal appropriately with families who are facing the imminent death of a child…or a sister…an aunt…a niece…a parent. Forget your profits for a moment and consider what is best for the patient…for the family…how you can help make an unbearable situation more bearable. That’s your fucking job. Do better so no one else has to go through what we did. Losing my daughter was the most horrific experience of my life. I did not need you to make it worse…and you did…infinitely worse. You should be ashamed. People come to you for help. Be helpful. Have integrity. Be better.

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