It’s difficult for me to trust our health care system because I spent 6-14 hours a day for 252 days at a family member’s hospital bedside. During that time we were denied access to a doctor, refused treatments and not told the truth.
It took 17 blood transfusions before anyone would listen to me and do an investigation into the problem. For six-and-a-half months I was told an MRI wouldn’t show the problem. When the problem was finally found, an MRI would have shown it. And the need for transfusions was stopped with a procedure that took five minutes!
During all of this we went through the hell of trying to get a placement in an extended care facility.
On January 22nd, 2010 I was informed that our family member was considered “medically stable” and could be transferred to an extended care facility. We had to start paying for our family member’s hospital stay (see below) as of January 25th. On February 7th the paperwork for our family member to get on “the list” for an extended care bed went to the anonymous government board which oversees placements. On March 4th I was informed the application was rejected because the board felt our family member required too much medical care. I asked the hospital placement person in charge of the file, “What’s next? What will become of my (family member)?” The placement woman didn’t know, said she would check and get back to me. She never did.
On April 23rd, when there was no resolution to our family member’s status, when the placement woman had yet to provide answers to my March 4th question, when a doctor told me he refused to attend a meeting because he disagreed with what I was being told, and when I learned that our family member had been accepted into care but no one told me and the hospital had rejected that approval, I wrote the placement woman.
On May 6th, the two hospital placement women came to our family member’s hospital bed and asked to speak with me. I expected this was to discuss my April 23rd letter. They wanted to talk about the Personal Directives Act, which came into effect on April 1st, 2010. When I raised my letter they claimed not to have received it, even though I had hand delivered it on the 24th. Fortunately, I copied the letter to hospital site manager. These placement women refused to discuss my issues and referenced a Department of Health letter concerning my family member’s status. I hadn’t received any correspondence from the department. They shouted, “Well, you should have!”
I walked out of the meeting. These two women, I later learned, told their manager I had threatened them. I have met presidents, prime ministers and princes, I know how to act in pressure situations. If anyone felt threatened it was how they would appear in a performance review.
Because of my journalism background and because in hospital you are in an alien environment with its own language and because of my need to keep my sister, nieces and aunt updated on our family member’s condition, I made daily notes, like a diary. On May 6th I taped the whole meeting. It’s a good thing I did because that is my defense. I threatened no one. Yet, it’s two of them against me. The next day, May 7th, I was called to a meeting with the placement manager (a woman I had asked to meet for two months and denied access to), the hospital manager and nurse manager. With three of them, I anticipated there would be a lot of information flowing, so I again pulled out my tape recorder. The hospital manager told me – and I have this on tape – that the hospital has a no tape policy. I reluctantly put my tape recorder away. Later I learned the hospital has no such policy. Once again I was not told the truth.
I then learned this meeting was about the supposed threats I made against the placement staff. The managers’ attitudes changed noticeably when they learned I had a tape of that meeting. The discussion quickly moved on to finding a bed in an extended care facility for my family member. It had taken two months to get their attention. (By the way, the hospital manager acknowledged receiving her copy of my April 23rd letter. In the two weeks she had it in her possession did nothing with it. She did not contact me or speak with her staff to see if the situation had been resolved.)
On Monday, May 10th, I received a letter from the Kentville office of the Department of Health concerning the earlier decision regarding my family member’s placement. That decision was made prior to April 6th. The letter was dated April 29th and not mailed until May 7th.
I am suspicious that this letter was merely written to give cover to someone who failed in their duties. Months later I learned a representative of the Department of Health has issued “warnings” about me to members of our community. I have never met this person, never corresponded with her, never spoken to her. Anything she thinks she knows about me comes from sharing an office with the local health authority. That would seem to violate a number of regulations, both by the Health Authority and Department.
(NOTE: I was right to be suspicious of this April 29th letter. 16 months later I learned that the person who wrote this letter – she mailed it over another person’s signature – didn’t work for the Department of Health, but worked for the local health authority. She hadn’t worked for the Department of Health for two years, so why is she still using their letterhead? Why is she signing with another person’s name and title? Why are there no repercussions of this type of action?)
Here is my issue: if this can happen to me, it can happen to you. How do we know it hasn’t happened to others? Where in the rules, regulations and laws in this province are the patient’s family members and representative protected? In hospital the patient and/or their family member is often on their own to face a team of people throwing so much information at you it takes time to digest. I have noticed in my meetings with hospital teams that they don’t keep notes. I understand from federal civil servants this is a way to provide deniability, which suggests to me that ours is an adversarial health care system.
Without notes, staff can make whatever later claims they wish and the layperson, like me, who is responsible for making medical decisions, is at a disadvantage. Additionally, if they fail in their duties or act in an unprofessional manner or to our family member’s detriment, they escape punishment because they are protected by taxpayer-provided legal representation. The health care authority’s vice president of medicine told me, “Your (family member’s) health care would have been better but for you. You ask too many questions. People are intimidated.” I’m expected to make life-and-death decisions and they resent me asking questions! One woman wrote on this blog, “It seems to us that anyone over 70 has an invisible expiry date stamped on their body somewhere. The system is in no hurry to help them with their problems.”
We have privacy laws, but my experience and the experiences I am hearing from other Nova Scotians is that these laws mostly allow health care authorities to hide their failings.
We need laws/regulations/something to protect those of us who are trying to act for our loved ones. I believe we need:
1. We need a regulation which forbids health care authorities from preventing families from recording meetings. Given the stressful situation and the overwhelming amount of complicated information, many of us need a reference to review and something to share with family members to ensure we make proper decisions.
We are asked to make decisions that we can only make once. The rules and regulations are all weighted against us. Our system, as it operates now, isn’t collaborative, it’s combative. The system is terrified of being sued. But when you are unaccountable, you have no inspiration or incentive to be good at what you do. This needs to change.
2. I believe we need a regulation that requires an impartial, outsider observer be present anytime female staff meet with single men. That outside observer would be for the protection of all parties. However, that outside person cannot be a security officer because that would be intimidating. I don’t think this is unreasonable given that most high school teachers in Nova Scotia won’t allow themselves to be left alone in a room with a student for fear of a false accusation.
There have been a number of cases across Canada where men have been falsely accused by women and children and later exonerated when statements have been recanted or facts have not supported charges. But this has not happened before reputations have been damaged. We need protection. When someone – male or female – does do wrong, they should be prosecuted, but unfounded accusations shouldn’t be viable escape mechanism for someone caught not doing their job.
3. We need a regulation which prevents civil servants from remaining anonymous. How can we question decisions and actions if we don’t know who to contact? They know who we are, but we don’t know them, this creates an imbalance, which can be to the detriment of the person in care.
4. We need a standard for transmission of information and a requirement for that transmission to be forthright and fast! I asked questions about my family member’s condition in March 2010 and was ignored. I kept asking until we left the hospital in June. December 15th,, after a return to the ER and something the ER doctor told me, I put my questions in writing to the vice president of medicine. On February 15th I followed up and again in April. This health care authority’s mission statement says: “We make rational, informed decisions based on evidence and we are accountable for our actions and effective sustainable management of resources.” If true, why does it take so long to respond to questions about the care they give? A friend in Cape Breton had to wait 19 months for his father’s autopsy results. Why does it take so long to gather this information? It would seem they are playing a game to wear the family out, to make us wait so long we will give up and stop questioning what is or has happened to our loved ones. Either that or they’re unable to execute their job.
5. We need an inquiry into how staff act and carry out their jobs. A month after I was accused of threatening the placement staff, one of these women threatened my cousin, who was recently widowed, that if she didn’t answer her – the placement woman’s – questions “immediately” my 89-year-old aunt’s scheduled respite stay at the Evergreen Home for Special Care would be cancelled. How is this right? What emboldens people to treat frail and distressed people as mere pawns in some game? Interestingly, the week I finally received word my family member could move out of the hospital, that home had seven other empty beds. When I told the doctor on duty, he asked why they still had 10 people in a holding wing, waiting for placement? Indeed. Our system if rife with confusion and miscommunications – and a few untruths.
For the health and safety of those in care, we need change now.
(I wonder how many families and patients are paying for hospitalizations that they shouldn’t have to? If the medical assessment says the patient is well enough to move to a special care facility, but the civil service refuses to accept this assessment, why should the family or patient pay for their daily stay in hospital? It doesn’t seem fair. And why should patients and families pay for hospital stays when the paperwork for a transfer sits on a desk in that hospital? Our paperwork went out 12 days after we had to start paying for the stay. And if your application is rejected and the patient is forced to stay in hospital, why should you pay? Ask for your money back. If more of us did that, the system might just speed up. Looking at my local health authority’s financial statements I saw that the fees they collected for people waiting to go into care rose 60% in one year. And that was a year when we had over 120 new long-term care beds added to inventory. It doesn’t make sense that access to more beds slowed placement. Either the placement process is seriously flawed or people aren’t doing their jobs.)