by Kate Adamson
In 1995 I had a catastrophic pontine stroke. I was in the prime of my life. At 33, I was a young active mother of two small toddlers. My life was busy, I was constantly juggling things, running a home, changing diapers and being a busy mom, filled my days to the brim. My health was important and I made working out a priority. I was in the gym six days a week for two to three hours. I felt fulfilled as a wife and mom.
Life seemed to be in balance, until that fateful morning on June 29, 1995. Suddenly, my life changed, my world was turned upside down, and I became the one having my diapers changed. Life from this day forth was never the same for me or my family. As one of my doctors put it, I was circling the drain on the way out. Steven, my husband, was advised to contact a mortuary when I was given less than one chance in a million to live through the night. My healthy, toned body would gradually wither to nothing but skin and bones.
If I were to survive, I needed a miracle. My doctors were entrusted with delivering that miracle. Once my condition was stable, however, it took more than medical skill and dedication to see me to a meaningful recovery. One group that played a major role in my recovery was my case managers.
Fighting for Survival
An unfortunate but real tension can arise when a tragically sick person confronts the medical system. Resources are scarce and enormously expensive. No one wants to let someone die or be sick needlessly, but deciding who should – and should not – receive care is one of the conflicts our society has to deal with. If I had died, my insurance company stood to save $1 million or more. They were not keen about extending treatment to a woman they believed had no potential for recovery.
My husband, who was my lifeline at this point, profoundly mistrusted the insurance company and thought that he would have to battle the powers that be for my survival. In his mind, the case manger was an agent of the insurance company, so Steven wanted to stay as far away from my case manager as possible. He thought that any information given to my case manager would be used against me in the court of insurance coverage. Steven felt that it was up to him alone to save me. He let everyone know that he would sue the world unless I got everything he wanted for me. I am glad he eventually came to view the hospital staff and case mangers as friends, not enemies, because their partnership helped turn the tide for me.
It wouldn’t have made any difference in the first few days if Steven had bothered to make a personal connection with my case manager, because the medical attention I received was pretty much by the book. Once Steven made it clear that he wanted me kept alive, no matter what steps were necessary, the care was pretty much routine. After a day or two in the emergency room of a small community hospital, I was transferred to Torrance Memorial, where I could get a better level of care.
The first day I was there, Steven met and made a solid connection with my respiratory physician, Dr. Steven Kolodney. Dr. Kolodney told Steven how the hospital worked and made him aware that the case manager was not only on my side but could also be a key ally. Steven immediately took this advice to heart and contacted my case manager. He told her that I would be a miracle and he’d appreciate any help he could get in securing the best possible care.
I know now from my own experience with other stroke survivors that not every patient is lucky enough to have an advocate in his or her case manager. I was blessed to have a case manager who was willing to extend herself to try and help make a miracle possible. Steven took the first step to make things happen, and he wouldn’t have known what to do without the advice of Dr. Kolodney. The effort was well worth it.
It took awhile, but a buzz was created in the hospital around the idea that Kate Adamson was a person with an amazing story. This helped me in so many ways. Everyone wants to be around a miracle – no one likes to be on a death watch. Because the staff began to believe in me, I got all kinds of extra attention. For example, when I developed a life-threatening bacterial infection my case manager worked with the laboratory technician to make sure my sputum was cultured every 3 hours instead of every 2 days, as is the regular treatment protocols.
Before my stroke, I had never heard of or met a case manager. I don’t need to tell the readers of this magazine what a case manger is, but I can convey how a patient feels about a case manager. The case manager is the keeper of the keys. From my standpoint, my life seemed to depend on institutions and people completely beyond my control. I had a wonderful ombudsman in my husband, but he was a lawyer, not a hospital staff member. When I realized the case manager could be on my side, I slept better knowing that I did not have to fight the hospital alone.
It also meant a lot to me mentally to know that I was not alone in my desire to pursue what had been described to me as a hopeless course. For example, my right to go to rehabilitation was very tenuous because evidence to support my wishes was scant. What evidence they could find was marshaled by my husband and my case manager to make the best case possible for my continued acute care. It did not hurt the situation that my husband was an attorney, but he would not have had the time or knowledge to pick what should be presented if not for my case manager.
I was extremely blessed to have a compassionate case manager that was willing to fight for me. That made all the difference in the world. Taking on the insurance wasn’t an easy task. My insurance company wanted to have me warehoused; they thought I had no potential for rehabilitation. The medical opinions were negative and seemed to back up the insurance company. My determination to survive was going to be a war. I guess the easier route for the case manger would have been to agree with the negative assessment, yet the partnership my husband had formed with her paid off handsomely. She took the harder road, insisting, along with my husband, that I be evaluated by the rehabilitation hospitals of my choice. Working with Steven, evaluations were set up for me with Long Beach Memorial and Daniel Freeman Hospitals. I hardly remember them because I was so very sick. When I was evaluated at Daniel Freeman, I was not yet able to move any part of my body! All I had going for me was the faith of my husband, my case manager, and the doctors.
My case clearly shows how critical the partnership among patient, family, and medical staff is to the ultimate outcome. I cannot stress how important it is for everyone to get together and fight as one team. The family needs to enlist the case manager and vice versa. My job was to take the next breath; my team’s job was to get me the best care possible.
As I moved from an acute stage toward rehabilitation, my team had their hands full getting me transferred to a rehabilitation hospital. Without my husband, Dr. Kolodney, or my case manager, I thought I was going to die right there in Torrance Memorial. Finally, I was scheduled to be moved to Daniel Freeman. Unbeknownst to me, the staff there had concluded that I had no potential for recovery, and I was to be denied admission. The hospital told my family a different story, however – that I would be admitted to rehabilitation within 2 days of being out of intensive care.
When I made that milestone, plans were made to pick me up 2 days later by ambulance and transfer me to Daniel Freeman. I was nervous yet ready to be moved. The ambulance was due at noon. Unfortunately, noon came and went, still no ambulance. Excuses were made, and a pickup was arranged for the next day. The ambulance never arrived that morning, either. Concerned, Dr. Kolodney told my husband that something needed to be done that day. In his professional opinion, I would simply give up and die if I wasn’t transferred before sunset. Steven asked the doctor to assist him in getting me transferred. Both of them contacted the case manager, who reluctantly told them that Daniel Freeman had no intention of accepting me.
Steven immediately phoned the admission people at Daniel Freeman. “Why has the ambulance failed to show up?” he demanded. Excuse after excuse was offered, but Steven would not relent. He explained that the case manager had been informed that I was not going to be accepted into the program. He then threatened to sue the hospital staff if they refused to admit me. Then Dr. Kolodney got on the phone and yelled at the admitting people.
Finally Steven was able to determine two things; first, my evaluation had occurred before I was able to even move any part of my body; second, I was being turned away for fear that Steven would sue the hospital. He was able to convince the hospital that not admitting me would surely lead to a lawsuit. Admitting me on the other hand, could lead to a happy ending for everyone. Within 90 minutes, an ambulance arrived and I finally was transported to Rehabilitation. I still remember the words of my new neurologist. After finishing his assessment, he looked at me and said, “I think this is going to work.” I desperately needed to hear those words.
I suspect that my case manager at Torrance placed herself in a very awkward position by telling me what was actually going on in regard to my transfer. I will always be grateful for the courage and dedication she gave at this critical moment in my recovery.
I now had a new case manager, Susan, and, again, Steven forged a close alliance. He began a campaign to create the same kind of miracle story around my case that had existed at Torrance Memorial. His technique was to fly a squadron of B-2 bombers loaded with nuclear weapons over the hospital, while politely asking the staff for a few moments of their attention. Before Steven was done, he knew the case manager and she knew him – perhaps better than either one of them would have wished.
Steven, being a lawyer and temporarily out-of-his-mind, was feared and loathed but respected by everyone. The patient’s husband who is about to napalm the hospital gets all the attention. He was determined that I get every advantage possible, including little things that meant so much, like arranging with Susan to get me an air mattress bed as soon as one became available and extra mat time during my therapy.
Susan held weekly meetings with my medical team and my family. Steven asked questions and more questions while demanding answers; Susan was wonderful at addressing these concerns. If I were going to improve from a functionally high quadriplegic suffering from locked in syndrome, I needed plenty of goals! During the 3- month stay, the team helped me focus on smaller steps that I could accomplish. With determination, I strove to meet those goals each week, while Steven kept in constant contact with Susan. Together everyone worked as a team.
Word spread about how willing and dedicated I was as a patient. I’m definitely an A-type personality, and I made that work for me with a fierce determination to stay focused on my long-term goal of going home. I began getting all kinds of extra support. After all, everyone wants to be part of a miracle.
The staff started setting up meetings with me and the newly arrived patients. I was a great example, showing willingness from the patient’s point of view. The slogan on the rehabilitation floor became, “If Kate can do it, so can you.” I loved the chance to help the other patients. Keeping a positive attitude helped us all, although many tears were shed. In fact, I was on a constant emotional roller coaster. The key for any patient’s success is a willingness to do the therapy. Being allowed to encourage other patients gave me a chance to motivate myself. It kept me going and in return, everyone won. The seeds were planted for bigger things to come in my future. Focusing on other people truly helped my recovery
Case Management Applications
Can health care professionals learn any lessons from my experience? I think so. First, patients are not your enemy, but they are somewhat afraid of you. In their minds you hold healing in your hands. With communication you can forge an alliance that will make a difference for everyone. You will serve your patients better and be in a position to derive a much higher degree of satisfaction if you reach out to them. Take the initiative to contact them first.
In the nightmare world of an acute medical crisis, patients’ families may find themselves suspicious of everyone, so it can be so worthwhile to let them know who you are and what you can, and cannot do for them. It is so important that you let the patients and families know that you are on their side and that you will be there to fight for them to get the best care possible.
It helped me to understand how the insurance company evaluated me for continued benefits. Every week, my case manager told me what the insurance company was looking for to approve further treatment and what she was going to tell them. My husband and I were allowed to give input on what my ongoing evaluations would say. I was given the chance to comment on each staff opinion before a final report was prepared. This allowed me to be a part of my own recovery and helped me to stay motivated.
When you take the time to forge relationships with the people who make up your cases, everyone will be better off. Ask yourself: What are my goals? Who do I represent? How can I best serve everyone? Remember, you as the case manager can make a huge difference.
I remember back to when I could only blink my eyes and wondered what the future held. I was very lonely and isolated as I lay trapped in my body – a body that had been so strong, healthy, and full of life. But now I was stripped of all that had made me independent. It was terribly humbling. I never dreamed I’d have a life again, let alone be touching so many others.
My life today is one of gratitude on a daily basis. Thinking back on this journey, I would not be where I am today without help from so many people. I was fortunate enough to have a great advocate in Steven, who fought for me every minute of the day. His determination to use every resource available and my willingness to work for survival were assisted by a great staff, including a wonderful case manager. These people gave me the greatest gift possible – a second chance at life.
Reprinted with permission from The CaseManager