Norma’s story – a human tragedy reflecting human and system failure

Citation

Bowerman, J. (2009), "Norma’s story – a human tragedy reflecting human and system failure", Leadership in Health Services, Vol. 22 No. 1. https://doi.org/10.1108/lhs.2009.21122aaa.001

Norma’s story – a human tragedy reflecting human and system failure

Article Type: Editorial From: Leadership in Health Services, Volume 22, Issue 1

Recently, I have received two books to review for LHS – one comparing home care systems in three different stories; the other about how to use action learning in the workplace. As I read these books and reflect on their content, I am reminded of a rather tragic personal event that occurred just this past month.

In September of 2008, my mother’s close friend died under tragic circumstances. Her passing for me brought together for me some of the failings of a very sophisticated health care system that can replace a heart, provide treatments for cancer, yet fail to address the dying needs of a senior citizen with dignity. The story is sad – I am informed by many that it is common across borders and countries – it reflects a health system that is busy – driven by immediacy and with no time to consider individual circumstances, nor for learning across professional boundaries. It raises a number of issues, including how the elderly are treated in our society, appropriate resources and where they are directed, and just how vulnerable we are when we have no advocate or lack the personal power to advocate for ourselves.

Norma Brown was an 83-year-old woman who lived very independently for most of her life – despite bad asthma and a congested chest. She had little or no involvement with the health care system until she developed type 2 diabetes some two years ago, and at that time had to be rushed to the hospital. Since then she had managed herself, as she had before, but the diabetes took its toll on her strength and mental acuity, and though she attended diabetes meetings and worked hard with the pharmacist to manage her medication, she became increasingly frail.

Norma lived in a small rental apartment. Over the past two years her rent had increased by 50 percent. Without the financial help from her brother in Ontario she could not have afforded to live there, but she lacked the sheer physical and mental strength to move. And finally, she just grew to chronically sick for anywhere else to take her.

In early September of 2008, whilst attending an opening of a senior citizen’s recreation centre, Norma collapsed and had to be rushed to the hospital. It was believed that she had suffered a stroke. She was hospitalized for three days in the Emergency Department of the university hospital. When friends went to see her, they were told that she had “amongst other things, been suffering from lice” and had needed to be “cleaned up”. In fact, she did not have lice – she was suffering from bed bugs. In addition, the friends were told by a kindly and concerned nurse that there was “no way she would be released to her apartment She was absolutely too sick to be sent home”. They also needed the contact information for her next of kin which my mother, being Norma’s friend, willingly volunteered to go and get.

When my mother went to Norma’s apartment to pick up her brother’s telephone number in Ontario, she could see that the whole apartment was crawling with bed bugs. The furniture had all been moved away from the walls, suggesting a previous infestation which someone had attempted to deal with. The mattress and bed were propped up against the wall. Norma, obviously lacking the physical strength to put things back in their place, had been sleeping on a tiny bug ridden sofa.

Mother returned to the hospital with the necessary contact information, some two hours later. She had been vastly relieved that they were keeping Norma in the hospital – especially when she had seen the state of her apartment. However, in the two hours of my mother’s absence, all plans had changed. As soon as she arrived, she was told that the hospital was releasing Norma immediately. When mother protested “you can’t send her home to that hovel”, they said it had already been decided and that home care would take care of it from now on.

Norma was sent home on Friday evening. She was very weak – had great trouble breathing, and was in no condition to care for herself. My mother spoke to her on Saturday and on Sunday morning we took her some groceries, including tins of diabetic meal replacement. Without our help she would have had no food. Despite the hospital’s word, Home Care nurses had not been around. On Monday, the Home Care nurse finally showed up – my mother talked to them although they were reluctant to talk to her because she was not the next of kin. They asked my mother if she could take care of Norma. My mother informed them that she herself is 84-years-old and simply not capable of taking on the care of another, no matter how sick. My mother also pointed out the bed bugs to the Home Care staff. Even though the home care personnel were physically in the apartment they failed to see that the place was crawling with bugs until they were informed.

Norma’s landlord had her place fumigated again some three days later. Despite the terrible condition of Norma’s lungs, exacerbated by an insect infestation for which she was in no way responsible, (these terrible bugs crawl through the common pipes and heating systems of apartments and condominiums) we can only presume that she was in her apartment while the fumigation took place. The last thing she said to my mother was that the home care nurse was supposed to show up with a puffer to help ease her chest congestion.

Norma must have knocked her phone off the hook. No one from Home care showed up after Friday – one week after her hospital release. Her brother in Ontario and my mother both tried to contact her – to no avail. The police were called and broke in to her apartment. Norma, unconscious, was lying on her still bed bug ridden sofa. She was rushed to yet another hospital – where she died two days later – at least in a clean bed, washed clean, and with a chaplain at her side having been tended to by kind medical personnel. Officially, the cause of death was pneumonia and perhaps a stroke. In any event, Norma’s suffering was over.

Norma’s plight speaks to a growing sector of our population today. This sector is poor, lacks the capacity for adequate self care, and most of all is lacking in advocacy. No-one was there to speak up for Norma when she needed it. True, she could have chosen to live in Ontario where her brothers and sisters lived, but that was not her choice, and she was not a drain on the health care system – nor indeed on any system, until her end. Norma’s independence, her ability to manage on the pittance of a pension she received from the government is to be admired. But when the end comes, and it does for all of us, where are the safety nets for the Norma’s of the world? Norma lived in an oil rich province in western Canada. Could there have been better alternatives for her end of life care? Let us examine the points where advocacy, and leadership and indeed basic human compassion, could have come together:

1. 1.

   Who made the decision to release Norma from the emergency department instead of giving her the hospital bed she so clearly needed? Was it a Nurse? An Administrator? A Doctor? If people as desperately sick as Norma are released, then there needs to be a system in place to handle the situation. A social worker? A respite home? A home care system that works? It is all to easy to point the finger at lack of money, but when the system is broken, then no amount of money can fix it. It takes people who talk to each other. This was so clear in the Gerry Robinson series from the BBC. An important component of leadership is communication especially across professional boundaries, and making right decisions. In the face of information to the contrary, the hospital knowingly released Norma to a situation from which she could not possibly recover. It’s easy to get health care when the bone is sticking out of the skin but it is much harder when one’s condition is both acute and chronic, not immediately visible and especially when one is old and helpless.

2. 2.

   What about the leadership in the home care system? How do they know if they are the appropriate body to be caring for someone who is acutely ill in appalling living conditions? Could their workers not have seen her desperate plight and done something about it? Removing her from her apartment? Checking on her two or three times a day on a daily basis. At least making sure she was not there while the fumigation took place, and then doing the necessary cleaning to keep the bugs at bay. It takes a lot of work to eliminate bed bugs. A puffer is no answer. Were they not communicating with her doctor, the social worker, the hospital? Could they have not made the call that she was simply too sick to be on her own at home. But then home care personnel are not highly paid, they become the equivalent of housekeepers with little status in the health care system.

3. 3.

   When something like this happens, and I suspect that Norma’s case is just the thin edge of the wedge, then where is the learning? If we all just carry on in our busy worlds operating independently then the learning does not happen and the leadership is broken. We try to create leadership through training; we demand it from leaders and criticize them when they fail to deliver, yet the opportunities to build and develop it on the job are ignored in the interests of efficiency and work. What would have happened if someone had refused to send Norma home? Could that happened and if not then why not?

When things are going well, and everything happens as it should, we assume that our leaders and the leadership they provide are in alignment – things are working. But this case does suggest that our formal medical case system despite its sophistication – is simply unable (or unwilling?) to provide the necessary care so that the very poor and elderly parts of our population can live out the remaining days of their lives with dignity. How do we prevent this? I believe that the answers lie in our willingness to communicate with each other, our ability to exert the personal leadership attributes we possess, whatever our position in the hierarchy, and the need to be open to changing how we think and what we do. One simple decision, “let’s keep this woman here in the hospital” would have enabled Norma to live her last days with dignity – not too much to ask in a country and province as rich as this one is.LHS Co-editor

Jennifer Bowerman