I am writing about the experience my sister Michelle had while staying at a downtown Toronto hospital from December 4, 2009 until December 22nd, at which point she was moved to the palliative ward.
My sister was a patient there for 5.5 years following her diagnosis of stage III ovarian cancer in 2004. Michelle received excellent care there over this time period. Her original oncologist is a wonderful doctor and Michelle was very grateful for the care she’d received there. Michelle had a recurrence 18 months after her initial diagnosis, a period of remission and then another recurrence in the fall of 2008, when a tumour was found in the lining of her lung.
Michelle had always had a very high opinion of this hospital. She knew that she’d lived longer than many women with a similar diagnosis. She enjoyed excellent relationships with various medical personnel.
My sister was a very intelligent and capable 49-year-old woman. She was single and very independent. We were extremely close. I had Michelle’s Power of Attorney, but there had never before been an occasion where she’d needed me to intervene on her behalf.
In November 2009, Michelle began a new clinical trial. The hope was that the drugs would shrink the tumours in the lining of her left lung and those in her left arm. The new drug didn’t seem to be helping and Michelle was having a lot of trouble breathing. I called an ambulance for Michelle on December 3 because her breathing problems worsened. She was taken to another downtown Toronto hospital and then was admitted to her regular hospital on December 4, 2009. Our expectation (hers and mine) was that she would begin a new type of chemotherapy. She’d had an appointment scheduled on the week of December 15th, to discuss treatment options. We were both aware that her situation was serious but we weren’t expecting her to die in December. We thought she’d get one more reprieve.
Michelle, who had lived independently and without oxygen prior to entering the hospital, was put on oxygen and had to use a wheelchair while in the hospital. She wasn’t able to walk further than the washroom in her room. The fluid in Michelle’s lung was lobulated and after several unsuccessful attempts to drain the fluid, her doctors decided to place a chest tube which was attached to a unit that took fluid out of her lung. The unit rested on the floor.
When she told the nurse that the instrument (a device that measured the fluid in her lung) attached to her back (through a tube) was too heavy for her to carry, she was told it wasn’t heavy. She needed help getting to the washroom. She had to navigate oxygen tubes and her chest tube. Michelle was a very independent person who lived by herself and rarely asked for help.
During an over two-week stay, only twice did the nurse who was caring for Michelle write her name on the whiteboard in Michelle’s room. She was weak and tired and didn’t know who her nurse was most of the time. Michelle wasn’t able to walk to the nurses’ station. She felt powerless, forgotten and abandoned.
Despite being a patient at her local hospital for over 5 years, Michelle’s name was written as “Mrs. LastName” on the outside of her door. Michelle had never been married and did not use “Mrs.” She was frustrated because every new staff member who entered the room would call her “Mrs. LastName”. Michelle made it clear that she was Ms or Miss Michelle LastName, yet it took over a week for someone to change the tag on her door and everybody who came in would call her “Mrs. LastName.” This is the type of thing that may not be a big deal when someone stays in the hospital for a day or two but after a week, it was just another sign of lack of caring. Imagine 5 – 10 different people coming in to your room each day and getting your name wrong, day after day.
It seemed that everybody except Michelle and I knew that she was dying. Instead of telling Michelle how serious the situation was, staff kept asking her to sign a do not resuscitate order, yet she was kept on the 17th floor. These were the last weeks of Michelle’s life. She needed to know.
Michelle had to repeatedly ask porter staff to slow down because she was so nauseous. She was weak and needed gentle care. She was taken for an x-ray almost daily but she had to have this conversation every time.
Michelle was taken for a CT scan, though she was unable to lie down to have the scan. Anyone who had taken the time to look at her could see that she was not capable of lying down due to her breathing difficulties and her need for oxygen. Since she was so ill, moving around and waiting was a real strain on her body.
On December 17th, Michelle’s main doctor (while in the hospital) told me that Michelle had months, maybe weeks to live. Her lung was not working and there was nothing else that could be done. Even if they could get her lung to work, there was very little chance she’d respond to treatment. He also told me that Michelle would be moved to the palliative ward at her hospital as soon as possible. This was the Thursday evening. I called the social worker to discuss next steps.
When the social worker first met with me, I was told that after a couple of weeks, depending on her condition, Michelle would likely be moved from the hospital’s palliative ward to a long term care facility. We spent time discussing various facilities. I chose three institutions and signed the paperwork. There was never any discussion of Michelle moving from the 17th floor in the hospital directly to a different institution.
Even before Michelle found out she was dying, she wanted to move to the palliative floor. She wasn’t getting the level of care she required on the 17th floor. She wondered if the nursing staff thought that, because she was young, she didn’t need help. During the last week she spent on the 17th floor, she needed more care and assistance. She kept saying, “I’m so disappointed in this hospital.”
Once Michelle found out she was dying, she was desperate to get to the palliative floor. She’d stayed there for 9 days in October of 2008 and she knew it was a quiet, peaceful place. I told her on December 18th, that her doctor said she was next on the list to move to the palliative floor. This was on Friday. She was so relieved. She just needed to rest and be peaceful. She needed more care and fewer interruptions.
I was told on December 21st by her main doctor, one of palliative doctors and one of the nurses that Michelle would finally be moving to the palliative ward on December 22nd. Michelle was so tired and said very little at this point but she asked me repeatedly when she was moving. She was extremely relieved when I was finally able to tell her that she definitely would be moving the next day.
On the morning of December 22nd, I was getting Michelle’s things together for her move. By this point, Michelle was very weak and wasn’t speaking much. She was exhausted and frustrated. The social worker, who’d met me and knew that I had Michelle’s POA, walked in to Michelle’s room, intending to tell her that she’d be moving to a different hospital.
I asked the social worker to leave the room and speak to me outside. The social worker seemed to have no concept of the impact of what she was about to tell Michelle. This astounded me, since I had previously had a lengthy discussion with her about how Michelle wanted to move to the hospital’s palliative ward as soon as possible.
Both the main doctor and the palliative resident had told me that Michelle was declining rapidly and her life expectancy was looking more like weeks than months. When I told the social worker this, she replied, “they don’t know that.” I could see that Michelle was clearly deteriorating quickly and so could the doctors, yet the social worker was dismissive.
I told the social worker that Michelle had been promised a bed and 2 doctors and one nurse had confirmed this to me. I also told her that Michelle would be devastated if she were moved at that point. She needed peace and comfort in a place she knew. She didn’t need more stress and upheaval. Nobody had ever discussed the possibility, with either Michelle, or myself, that she would move from the 17th floor to a different facility. There was absolutely no understanding of the impact that decision would have on Michelle. There was absolutely no compassion shown.
This discussion continued with a doctor on the 17th floor. I do not know his name but I believe he was a medical oncologist. He, and several others, tried to tell me that a bed had become available at another facility at the “exact time” that a bed became available at the hospital, even though I was told about the bed Monday evening and the other bed mid-morning on the Tuesday. I told this doctor (The social worker was present for all of this) that three of his colleagues had told us that Michelle had the next bed. He continued to claim that the two beds had come up at the exact same time. I told him that made no sense. I also told me that I would not agree to have my sister transferred.
H e told me that if I refused a bed at another facility, my sister would stay on the 17th floor because the palliative ward would not accept patients who had refused beds at other hospitals. If I didn’t agree to move her, Michelle wasn’t going to get the care she needed. I guess he had the power to deny Michelle the care she required and let her suffer, while terminally ill. He was mean, threatening, unprofessional, bullying and completely insensitive. My sister had already been told she had a bed. There had never been any discussion of moving her out of the hospital prior to a stay in the palliative ward.
This doctor was yelling at me in front of at least 5 other people. I told him and the social worker that I was absolutely appalled at their lack of sensitivity. I wonder how either of them would feel if they had a loved family member who was dying, and instead of getting care and compassion, she was treated as a disposable number on a spreadsheet. The doctors continued to yell and try to bully me in to agreeing to move Michelle and I walked away. His behaviour was disgusting. I called Patient Relations to report this incident. Patient Relations called me back with an apology and the main doctor and the palliative doctor apologized. All of this was fine but apologies from those who had nothing to do with this were not the point.
A few minutes later, a different doctor and a nurse approached me from the palliative team. This doctor told me that Michelle could be moved to palliative care but then moved out to another institution the next day. Again, I felt this was threatening. Nobody seemed to care that Michelle needed to get what she was promised, which was a room on the palliative floor so that she could be peaceful and rested in a quiet, caring environment. As we discussed the situation more, I felt that this doctor did show some sensitivity. I told them that my mother was also terminally ill and that I didn’t have the emotional energy to continually fight for my sister. I was then told that Michelle would be moved to the PMH palliative ward. During this discussion, I was also told that three other people had been moved to the palliative ward over the weekend. I wonder why Michelle wasn’t considered a priority.
As I wrote previously, Michelle received excellent care at the hospital over the 5.5 years of her illness. She had a 9-day stay at the hospital’s palliative ward in 2008 to manage her pain. She was confident in the care she’d received during her time there. However, she was terribly disappointed in how she was treated during her time on the 17th floor. She felt abandoned and forgotten. She was very ill and she needed more attentive care. She felt so let down on so many levels. As her sister, I can’t tell you how much it pains me that she went through this during her final weeks of life. She wanted peace and comfort. She should have gotten it.
I found out later in the day on December 22nd that since Michelle had a chest tube and another instrument attached to the chest tube, she would not have been eligible to move to the facility at Bloor and Church. Multiple staff members pressured me and ignored my sister’s needs without bothering to determine whether the other facility would even accept Michelle.
Michelle moved to the palliative floor on the afternoon of December 22nd. She died on December 29, 2009. I wrote to Patient Relations about what happened and very extremely disappointed with the response. That’s why I’m sharing this story here.
What we learned:
1. Were the patient and their family members included in the performance assessment of their primary healthcare providers?
2. Did the care team collaborate with the patient and the caregiver?
3. Did hospital management assess how the staff members perform their duties?
4. Is there a survey given to patients that would include assessment of compassion, transparency and privacy?
5. Is there an independent patient relations agency to advocate for patients?
6. Does the hiring committee include patients and family caregivers?
7. Is management involved with patient quality feedback?
8. Did staff have a sit-down discussion with the patient and their family members once they were aware the patient was dying?
9. Did staff write their names on the white board in the patient’s room? Did they introduce themselves if they were new to the patient?