Hospital Diaries Part 4

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Hospital signI realized a while ago there was no way I could make this a daily blog. My days are full – waking in the morning with worry followed by doing the bare minimum to keep a house in order. I pay bills and feed the cat. The phone rings constantly and e-mails drop into my inbox asking “How is your husband? Please give us an update.”

We are actually in our third admission to hospital now. Since March 11th my husband has been home a total of six days:

Timeline:

  • Initial hospital admission March 11th 
  • Discharged March 18th 
  • Readmission March 20th (my husband and stepdaughter’s birthday)
  • Discharged April 29th
  • Readmitted May 3rd
  • Today is May 11th. He is still in hospital.

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There is no continuity of care. Every one to two weeks a new doctor heads up the GI hospital team. I have asked and been told that it is the same with many other teams. I asked and was told that it is not because this is a teaching hospital. This happens at most hospitals. I don’t have statistics but I can say I believe this lack of continuity in care puts patients in jeopardy. I believe that lives can be lost because of it. I have talked to doctors who believe this too. They ask me to speak out about this; to tell our story. So that’s what I intend to do. I will start by telling you this: There were times I thought my husband would die. He lost 20 pounds in hospital until the day his own, personal GI doctor rotated onto the team for one week. In that one week he saved my husband’s life.

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DoctorThough he didn’t know my husband personally, Doctor Number 1 keeps my husband comfortable (drugged up to dull the pain) while the doctor tries to catch up on many caseloads. In my husband’s case this means going through charts dating back 30 plus years. Because of the complexity of the situation he consults with specialists – GI and Hematology. He is unsure of treatment because the low white blood cell count that complicates things. He is supportive. Then he is gone.

March 25th Doctor Number 2 rotates on. I was concerned about this lack of continuity of care, which is why I asked the nurse to contact the team the night before (see my last post – Part 3). But no doctors arrived that day.

The next morning I go to the hospital and stop at the nurses’ station to ask if I can speak to the weekday coordinator. She is standing there. I introduce myself. She says she will come down to my husband’s room.

She arrives and I tell her our story to date, particularly about the issue of the inappropriate hospital room and the issue with the nurse the night before. She is supportive.

PaperMarch 26th
I pick up the brochure about the Patient Relations and dial the number of the woman I know – The Patient Relations Specialist. I leave her a voice-mail message. Later that day she comes to my husband’s room and we have a long chat. She documents the details of our situation. I ask for a family meeting with his medical team. She says she will set one up.

The meeting is set with the new GI doctor, the floor Coordinator and the Patient Care Facilitator. Both our daughters have come from work, out of town, to be present at the meeting. The doctor begins by outlining my husband’s case. I try hard to bite my tongue. I know the case. I need him to know what’s going on and we are the people who can bring him up to date quickly. He takes a breath and I dive in.

I tell him the issues quicker than a resident can update him. Some of the details he knows. Some he’s not aware of. I ask if he will be available to talk to me twice a week. He tells me he will and that’s always how things go. The coordinator looks at me and nods her head. So I tell him about the incident the night before and the fact that we waited all day and no one showed up. His composed demeanor is obviously rattled then states he will be available. And he keeps that promise. I see him a few times over the course of his two weeks on the case.

PhoneMarch 28thEaster weekend is approaching. My husband is getting weaker. The pain is escalating. I call him in the morning and he mentions that one of the staff is talking about whether he will be sent home for Easter weekend. I freak out again thinking they are going to discharge him and he’s too sick. But it is a misunderstanding on my part. I am assured by doctors that he will not be going home.

April 2nd – My husband can no longer eat by mouth. The doctors decide to give his stomach another rest. But this time he needs nutrition because he is losing ground quickly. I look at his once thin but healthy frame. His eyes are ringed with dark circles. His legs are like spindles. He sleeps a lot because he is on so much pain medication they can’t seem to keep up with the pain anymore so they’re giving long-acting medication plus timed injections and “breakthroughs,” an injection in between the timed injections.

IVHis veins are collapsing from all the IVs and they start a Total Parenteral Nutrition (TPN)  This will sustain him without food by mouth. But it is a thick concoction and is difficult on the veins, especially my husband’s that are already in poor shape after weeks of medication and saline solutions via IV . Eventually they have to stop giving him TPN via IV as the area is becoming red and sore so they order a Peripherally Inserted Central Catheter (PICC) line  (which he still has as of today when I am writing this). After the PICC is inserted and TPN starts he won’t need to put food into his sick and painful stomach. Then he will gain strength. And I see this happen after less than a day. Today we are hopeful. Some days not so much. This is a roller coaster ride that just doesn’t seem to have an end. But today, he’s o.k. I think.

On Monday, April 8th Doctor Number 2 is gone and Doctor Number 3 is scheduled to visit my husband. When I go to the hospital I ask my husband if he’s seen the new doctor. He hasn’t. Later that day I ask the nurse when the doctor is coming and she says he should be around soon. Still later I ask again and a nurse checks the chart. She informs me that the doctor apparently came to see my husband then wrote in his chart that the patient was not in his room.

My husband hears this and is livid. The only time he left the room was to go for a walk and sit by the elevators to get exercise and wait for us to come up. Not knowing my husband (again, lack of continuity in care) the doctor apparently walked right by him.

April 10th: The hematologist came to talk to us on March 21st when my husband was in emergency. We are told the results of my husband’s bone marrow test, to see if he does have MDS,were inconclusive. There are four separate tests. One said Yes. One said Maybe. Two said No. They will have to do another bone marrow test after the medication he was on is fully out of his system. This should be four weeks from when he stopped taking the medication (March 11th). It is scheduled for April 10th. The GI Team says they will let the hematology doctor know if my husband is still in hospital and they will do the test  in hospital April 10th and we will have the results of the test two days later – on the Friday so no waiting over the weekend. We have been counting the days (I will explain more about this in my next post).

Most days I ask to see Doctor Number 3 and am told he will be there in the afternoon. This goes on during the course of the next two weeks. The doctor never comes when I’m there. I am not doing my due diligence as a caregiver. I should be insisting on seeing him but I can’t because my days and nights are physically and mentally occupied trying to keep my husband from the torture he’s enduring.

Hospital bedFor the past two weeks I have been lying next to him on the bed to help him until the painkillers kick in. It becomes our daily ritual as we hold hands and cry together. He whispers “it’s o.k. it will be o.k.” over and over and over again. And we cry. This is the first time in over 30 years that I have ever seen him cry. It won’t be the last time.

Doctor Number 3 has told my husband that he can start eating again. He tells my husband he can be discharged when he starts eating 1,200 calories a day. But each mouthful sets off the pain. And every day we watch the same horror story repeat itself over and over and over again. My stepdaughter implores him not to eat the food but my husband feels he should follow doctor’s orders.

One day a full roast beef lunch arrives. He eats it and gets violently ill. The pain is so bad there are several breakthrough injections. I beg him to stop eating. He finally relents because he can’t take the pain anymore. So we agree that he won’t put anything past his lips that needs to be chewed. And I hope that this will help him.

April 15thDoctor Number 3 is gone. We are told that my husband’s personal GI specialist will be heading the team this week. I come into the hospital to find my husband in pain again. All he has had is liquids. The nurse brings pain medication. I lay on the bed with my husband. I look at the nurse and say “Can you page the GI team? Can someone please see what’s going on?” She says she can’t. They’re busy.

They’re busy. They’re busy. They’re busy. I hear this all the time.

child coloringI think about when my daughter was in grade school. She was a wonderful student; so smart and sweet. Her teacher was overwhelmed with a large class and one problem student in particular. She thought my small child could help her tame the wild child and she put their seats next to each other. My daughter came home bruised. I asked her what happened. She said the boy was hitting her. She said it was o.k. I said it wasn’t. I went to talk to the teacher. I asked her why my daughter was sitting next to this boy who was beating her up. She told me my daughter was a good influence on the boy. I told her I didn’t care about any of the kids in her class except for my daughter and she had better move my daughter out of harm’s way immediately.

The doctors are busy. I don’t care. All I care about is my husband. He is sick. He is dying. Yes, you can die from pain and I know that he will if someone won’t listen.

My husband is lying on the bed his left shoulder on the pillow his right arm draped over the bed railing.  I am holding him whispering in his ear to hopefully give him strength. He can’t talk. I look up. I think no one could have timed this more perfectly. I asked for this and it happened! His personal GI doctor is standing there. He looks at us. I see four residents. Their mouths are opened. They are staring. The doctor looks at my husband and says, “Robert, you don’t look very well” (yes, my husband has a name, but he prefers to be called Bob, but this doctor always calls him Robert – which is fine because, finally, someone who knows him as a person – not a patient number – is here). I look up and say, “the last doctor thought it was a good idea for Bob to eat 1,200 calories.” His doctor looks at us and says “then I don’t think you should be eating.”

I have a small amount of hope now. Someone who has seen my husband a few months ago is confronted with a man who has lost 30 pounds in total since they last saw one another. He knows my husband. He is busy but he cares. And he cares because he knows my husband as a patient AND a person . But I think, if he didn’t come there at that time Bob would have died because the medical care system is broken and continuity of care is no longer a priority.

So I will say this now and I will repeat it again because this has to stop. Continuity of care is imperative. Without it people can die, may have died, because the lack of continuity of care. We were lucky. Some people aren’t so lucky.

Our story isn’t done yet.  I have struggled for weeks against doing this; writing our story. I am tired. I feel most days like I can’t do this anymore but I keep doing it because I have to. I have to keep advocating, and I have to write about it too. The universe is somehow telling me that we can’t finish this journey unless I document it. And there is so much more to tell because our journey isn’t over yet.

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10 responses »

  1. I continue to be both amazed and appalled by your story knowing full well the truth of it across this nation. Politicians blame it on an overload of the medical system by our babyboomer generation but that is a simplistic response. Sure, that is part of it but shouldn’t be a surprise to anyone who has looked at demographics. Part of it is money of course. And part of it is foolish management that should NOT be making decisions that affect medical care. You are absolutely right; continuity of care is critical to the well being of patients.

    Thinking of you both with admiration for your courage and the love you share.

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  2. This is a horror story, Suzanne. The fact you’re relating it objectively as a journalist brings the horror of it into sharper focus as your tale unfolds. How absolutely wearing it must be for you to advocate for someone you love who’s at a critical point and yet have to accept, at least to some degree, the way things work in the hospital in order to keep those who can help on your side. I admire you for your strength and I also admire you as a journalist with your ability to tell your story this way. Everyone who reads your blog will be thinking, “I hope I never experience anything remotely close to this in the hospital system.”

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  3. Thanks for your comments Judy. I really appreciate your feedback and giving our story credibility, as a fellow journalist/writer and a friend.

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  4. Thanks for your support, Ceci. I have to write about it or it just gets bottled up inside. It’s one of the best ways for me to release my frustration, fear and anger – at people, but for the most part at the unfairness of all that is happening to Bob. He can’t seem to get a break.

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  5. Thank you so much for continuing to share this journey with us, Suzanne. I know it’s hard for you to do this, but hopefully, your words will ultimately help change the system. Continuity of care is indeed essential in cases such as Bob’s, where nothing seems to be working. How fortunate that his own doctor came onboard at the hospital and was able to step in and help. Hopefully, things will soon turn around for Bob. But we all have you to thank for documenting this journey. I am confident that eventually, you will have a long-form narrative (our possibly a book) that you will write to share the story with the entire country. Yes, we’re fortunate to have public healthcare in Canada, but it’s nothing to brag about it it’s not working.

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  6. Thank you for your support Doreen. I write to help myself and help others, I hope. I hear stories from so many other people about going through similar situations. In most cases it’s elderly parents who are virtually ignored by the health care system, treated like they no longer have value. That is so wrong and I could rant about that one for days. But today is my day off so I’ll let that rest. Thank you again for your support and friendship.

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  7. Suzanne, leaving aside your excellent analysis re continuity of care, can you strategize for the impending return of Doctor 3, who first ignored Bob and then gave very dangerous orders for him to eat? I’m thinking formal complaint to the hospital, formal complaint to the College of Physicians and Surgeons of Ontario. But the dilemma is, if you make these moves, and he is back on the rotation anyway, will he retaliate? Another option is to refuse any treatment he orders, could Patient Relations help you plan for his return?

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  8. You are doing important work here, Suzanne. We all know the system is bloated and dysfunctional, but it’s the personal stories that highlight the problem in the most effective way. Patients should not have to fear they will emerge from hospital sicker than when they went in but sadly, that is too often the case when files are mismanaged or, as you say, there are too many careless cooks in the kitchen.

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  9. Thanks for your support Janet. Bob is no longer under the GI team; he’s under surgery. I don’t have the strength to try and do more than write about it and I am concerned for his ongoing care so it’s a double-edged sword. And, believe it or not, I haven’t gotten to the worst part yet. If I was going to retaliate it would be the doctor who lied to us and scared Bob so much he was beside himself. That will be posted in the next blog.

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  10. Virginia thanks for your support. You said it perfectly. As I mentioned in comments to other posters here. I was concerned about Bob’s care and remained concerned. He is high risk. I don’t want to upset care givers but being quiet doesn’t work either so I am walking a tightrope right now. We can’t afford retaliation. And his current team is excellent, though I would like to give them a few pointers in patient and caregiver care. That will come up in a future post where I will have some research (hopefully) to support this. I am just shocked at the difference in the hospital system today versus nine years ago. It’s like night and day. How scary is it? I did everything I could possibly do not to have to have Bob back in emergency the third time (yes, he’s there again)I was absolutely petrified because of what we had been through the last time. But in the end it turned out to be a far better experience. I believe that had to do with continuity of care that surgery provides, at least for now, in our particular situation. More to come…

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