Narratives from a patient- and relative/carer aspect

The care journey or Aboard the Nostromo

“In space no one can hear you scream” Ripley said when she was fighting the monster, trapped on the spaceship Nostromo in the movie the Alien.

But the feeling of being trapped on a spaceship with no-one at the steering wheel, with no direction, alone and with an evil, invincible monster to fight continuously is a good description of our journey in the healthcare system.

Our family – a mother, a father and two little girls – obviously did not want to board Nostromo, and we did not want to wrestle with the immortal monster. We wanted to be like all the other, normal families and board a plane to go to some sunny place, or get in the car and head off for a skiing holiday.

About six months after our second daughter – we can call her Ingrid - was born, we realized something was wrong. Ingrid was developing very slowly; she showed no signs of communication or attention. After several investigations the doctors concluded that she had an extremely rare chromosomal syndrome; she was missing a few genes.

Only 13 to be precise, of the about 20 000 we all have; but one of the genes she was missing is one of the key building stones in the gene system. “Ingrid will have a serious intellectual disability” the neurologist nervously told us when we got the news. “We don’t know any more than that. Here, take this printout from Wikipedia about the syndrome”.

Welcome aboard Nostromo! (The neurologist didn’t say).

At home, in shock, you start to read up: What does the diagnosis mean? How long will my child live? Will she be able to walk, talk, go to school? Your thoughts are spinning. But there are treatments! Look here, in England, Germany and USA, there are different therapies! But, no, we are on the Nostromo. Direction: nowhere. We have to wait for the system to contact us. We are alone in the dark. Waiting for the monster to appear.

Where was the support then? The printout from Wikipedia was no comfort.

A few dark months later we finally get to meet someone to talk about therapies and interventions. By then we had read up quite a bit. “No, we don’t offer those therapies here.” The system decides the care needs. Not the patient. Not what our daughter, our family, needs. In desperation you take what is offered, you have no energy to fight. Aboard Nostromo you learn to feed the monster first. Sacrifice something to keep it at bay.

A couple of years later you start to recognize a certain pattern in the course of events aboard the care-ship. You get tossed around between different professionals that are a little like us on this ship, lost islands, a kind of zombie, that is just going through the motions of their job. As parents representing a child who can’t talk, who only expresses herself with screams or laughter, you demand contact with professionals; that they see us, that they see my daughter and her needs.

But, most only see a routine to follow, a system to manage. “You will have to go back to the reception on the first floor to register first” which I didn’t really hear through my daughters’ screaming after we had been waiting in line for 45 minutes already. “You have to ask her to lie still, otherwise we can’t help her”, something I could hardly believe my ears when I heard, through her screaming. “We have to take a new sample because the blood tests have been sent to the wrong unit”. “You will have to go back to the hospital (on Midsummer Eve) because we gave her the wrong antibiotics last week”. ”Her referral was lost in the system”. “Her case is under a new team in the new organization. The meeting will be delayed a few months more, regrettably”. “You will have to learn to complain to the right person, you cannot complain directly to me”.

In the health care system, no-one can hear you scream.

There are of course exceptions, lights in the darkness; committed professionals reminding us about how it should be always. Who show us that Nostromo is only a creation of a non-functioning healthcare system.

What could have been done different/better?

Our daughter has a rare disorder. Perhaps it is harder for the healthcare system to handle such cases. But there are simple things – “bedside manner” – that are universal: how to handle people when they are fragile, when they need help and support.

You can be clear, from the beginning, about the help that is available, how the process works, where you can get support from the start. Help and support should be offered and given, not be something you have to fight to get. Help and support should be offered on basis of the patient’s needs and wishes, not from systems or routines. Interventions should be offered based on the available evidence, not from the tradition of the establishment or the staff’s own views and fancies.

Professionals should see to the patient, not the routine or process they have to perform. I would also like professionals to see the whole family sometimes; because it is not only my daughter they treat but often also the wellbeing of the whole family. The staff should thereafter talk to each other, check the journal, understand who they are meeting, and as far as possible adjust the system to that person and their needs.

What do you think about person centred care?

Person centred care is a way of stopping Nostromo, and freeing all the families trapped inside, either feeding the monster in desperation or (in vain) starting to fight it.

Person centred care is a step in the direction of getting healthcare professionals to realize that ”the system” that was meant to help has become the monster; to show that the healthcare could be so much better if the focus is on the person and his or her healthcare needs.

My wife Christina was at age 65 multimorbid with pulmonary fibrosis and Chrohn’s disease. When she was taken ill acutely she was affected by movement impairment in the left side of her body. She was therefore admitted to the neurology clinic.

-You would think that when someone gets admitted to the hospital they will be met by a physician saying “I am your medically responsible physician. You will meet with me regularly and together we will discuss your test results, your care, your progress and your prognosis.”
That is not how it is, or that is not how it was in our case. An anonymous health care took over, perpetually changing shape with new answers, opposing answers, no plan for the care or prognosis, no continuity.

After 6 weeks 30 physicians had been involved and a while after that 50 physicians. There was no one the patient or the relatives could build a relationship with. No one who had the long-term medical responsibility, which is also pointed out in the Lex Maria complaint. We could not ask the physicians about last week’s care, or next week’s, or even the care yesterday. They were only there for the day, gone tomorrow and usually never to be seen by us again. They did not know about her medical history. They had to trust what her recorded medical values could tell them about how her body was functioning.

She was paralyzed but no one seemed to notice. At least no one mentioned it to us. I had to bring it up with them. A physician even asked her to turn over so he could check for bedsores. At the neurology clinic they discovered that her movement impairment was caused by an inflammation and fluid in the cerebellum. They wanted to know if the inflammation originated from some other part of her body and so she was sent for examinations at other clinics.

When Christina was sent to the pulmonary clinic we thought she would be seeing the doctor she had had there for five years. That is not how it works for multimorbid patients. When they get admitted for a “new” acute disease all their old contacts they had for their chronic diseases at the different clinics vanish. In this kind of industrial organization the lungs are sent to the pulmonary clinic for a medical status assessment by a consulting physician. That the human the lungs are attached to have a need to see and talk to their ordinary physician is not even considered.

Christina was walking into the neurology clinic on her own legs but was quickly paralyzed; eventually she could only move her right thumb. When she was referred to the oncology clinic she was confined to a wheelchair.

The written report regarding her from the neurology clinic was that ”no substantial deterioration occurred while she was admitted at the neurology clinic”. By that they meant that the lymphoma had not been growing during that time. That she was paralyzed was not mentioned. The oncologist therefore let her wait in her home for a place at the hospital for 10 days. During that period the lymphoma grew dramatically. The oncologist made a Lex Maria complaint regarding this.

The relationship with the patient was at some times remarkable. For example I left Christina on a Friday night at 20:00 and returned Saturday at 10:00. When I arrived I was told she had been moved to another room after I left the night before. Since Christina was paralyzed she was depending on the remote-control for the bed to be able to change her posture a little on her own. Now she was lying totally flat and looking up in the roof. This had been her situation for 14 hours. The cause of this was that the electronic socket behind the bed that the remote-control was plugged in to did not work. The health care professionals told me that they reported this the night before but that they did not know when it could be fixed since it was a weekend. I could see an electric christmas light in the window. It was lit and I pulled that plug out and plugged in the the bed remote-control instead and now Christina was able to use the remote-control again.

Christina died at the oncology ward a little while later.

What could have been done differently?
Christina should have had a doctor that had the long-term medical responsibility. The lack of consistency and shortcomings in the care was a safety risk for the patient. There should have been more continuity in the medical care from the time when she was treated for her chronic diseases; she should have been seeing those physicians that she already had contact with for her chronic diseases. Now, for example, the medications those physicians had prescribed years back were suddenly radically changed. This was worrying to Christina and no one discussed this with her.

In all, I found the organization industrial and inhumane.
No one knew who Cristina really was. What they did to her body was not our concern. It was a concern for the medical specialists and handled scientifically.

Care cannot only be a medical, pharmacological project, it must also be a humanistic and moral project, because caring for a sick person is probably one of the most humanistic things you can do.

The communication between the different clinics was minimal. When Christina arrived at the oncology clinic they did not know she was paralyzed. Neither did they know she was on medications that had to leave her body before they could start with treatment. Now she was hospitalized for four days in the oncology clinic, waiting for a specific medication the neurologists had given to her to leave her body.
The lack of cooperation becomes a danger to the patient.

About person-centred care
After the death of Christina I was told about person-centred care. Imagine if Christina had been given the chance to tell her story about her chronic diseases to someone. How well she handled them. How amazing it was that she was still able to work full time. How careful she was with her medication and how well it worked. How she made an effort to exercise on her own terms. How she loved her job as a linguist. What an excellent partner she would have become to the doctors if they had had the time to talk to her and not just been there for 2-3 minutes and there was a new physician every day. They could have worked out a really good plan together. They could have involved her in the things they planned to do.
That plan could have followed her and been revised and been available for the health care professionals during the course of her care. Then giving her sleeping pills every night and anxiety medication might have been avoidable. Then she would have felt safe and trusted the care. Now she did not.

“They have no clue at all” she said. I know she was right.
For the multimorbid patient the specialized care is totally fragmented. This leads to a fragmented trust in the care. The patients become care objects in an industrialized organization.

To become ill

When you become ill life changes. Often in a dramatic way.
- How am I going to manage? – Who can help me?
- Will I die?
- HELP!

We are born to live. We want to live our lives.

It was right after my sixteenth birthday that I got type 1 diabetes. In my diary I wrote “Death became my first boyfriend. He waits for me. He is always there, faithful”

The pediatrician that informed me about the diagnosis was probably only meaning well when he said ”You have type 1 diabetes! You will have to have injections every day for the rest of your life. But don’t worry, I know an elite athlete that has been living with diabetes for many years. You will be fine!”

I was not fine.

It was chaos. I did not understand anything about all the strange things I had to go through because of my illness. And no one explained it to me.
I was fumbling. Alone. Low blood sugar and hypoglycemia caused me to time and time again wake up in intensive care. The physicians warned me: “You almost died again!”

I didn’t understand – I did not want to understand and I was not able to understand.
I received no information about psychological reactions in connection with my diagnosis.
The hospital staff was concentrating on the medical side of it: ”It is easy! Just check your blood sugar. Take tests! Measure, analyze and act and everything is going to be fine!”

The beginning of my illness was a pitch black, incomprehensible experience. The following years were a fight for my life. No one managed to see or acknowledge what I was going through. I was so young! I looked so strong and healthy! Was it possible that I could be unhappy or want to die?
To me death was more real than life. And with death by my side there was worry, anxiety, pain and grief.
I was suffering from long and deep depressions and started to doubt my own ability.

After soon 38 years with extremely difficult to control type 1 diabetes and many near death experiences I have a good life. I realize that it is in part thanks to fantastic care efforts, but also because of my own fight for a decent life –in spite of serious illness.

What could have been done in a better way?

”Health care” probably meant well. But my feeling of lost health and my traumatic experience of illness was not adjusted to the care that was offered to me as “newly diagnosed with type 1 diabetes”. Different worlds met – we did not speak the same language. We were living in different cultures. We did not see or hear each other.
Today, with a little perspective, I know that a lot could and can be done better. To help and care in the best possible way is a complex and challenging task. And it is vital. That is why medical science, ”healthcare” and our possibility to help in the best way always are worth our strongest commitment.

EVERYONE will - one day - get weak, sick and old. That’s life.

Every time someone is diagnosed, the person stricken by illness should be guided, in a careful and perceptive way, to learn to live with the illness. The ability to live an as full and good life as possible is sadly not provided for the way the healthcare is organized today.

Person-centred care

When I met people working with person-centred care - PCC- was happy and inspired. PCC is based on a hypothesis that may seem obvious: That the care always has to be focused on the person who is suffering from illness; the person, the individual that has to live with totally new challenges in her life.
Obviously.
But sadly, that is not how it works.

We who have lived for a long time with illness know this. We hardly ever share our experiences with anyone, because who would want to hear about how complicated it can be to go to the bathroom, about how I would rather die, or how much it really hurts? A unique experience. A lonely fight. During my long stays at hospitals I have heard other patients/persons tell their stories. Our conversations are intimate and personal because we have experiences in common and knowledge about how challenging it is to live with illness. To meet other patients/persons with experience of serious illness often is the best route to insight and empowerment.
To survive we have been forced to develop a courage to live that is hard to surpass.

Despite this we need help.
That is not strange at all, because everyone does. Sooner or later.

There are some things I think about after a life with serious illness and the forced existential exile that illness brings. There are a lot of things we could improve for everyone in the big and complex healthcare organization. We have to focus on better care for everyone:

- Ask me – an individual, a person with resources – about who I am and how I understand.
- Ask me how I feel and about my experience.
- Let me be involved as much as possible - let me see you - and see me. We have to work together without prestige to better treat my illness/me.
- See me as an intelligent person who can teach you a lot.

- Inform me, be generous with your knowledge – and I will be generous with all I know and have experienced. Together we are stronger.
- Ask what I want or need to do to feel as well as possible.
- Ask what you can do – and what you CAN’T as a physician, nurse, healthcare staff. We have to acquire a language we can understand together.

If I understand correctly, PCC – person centred care – this view is about everyone’s equal right to life. A good life. A rich, interesting, stimulating, fun, demanding life, in the same way that life can be if you are healthy.
If we are to live on the earth together for a while we should consider our shared experiences in the art of being human.

Person centred care is about taking back this perspective. About the art of being human in healthcare, in society and on the earth. As a physician, nurse, relative or patient/person. As a human with a love of life.

In the big, unwieldy, bureaucratic and according to politicians extremely expensive ”care” this sadly does not work very well. The most important task for politicians, economists, buraeucrats, hospital directors and others have in front of them is:

Life itself. A good, rich life despite of the vulnerability all humans sooner or later will experience.
Exactly as it is and always has been with all people: infants, schoolchildren, teenagers, mothers fathers, refugees, ill, healthy, fathers, old, heroes and gangsters etc. Everyone is a person with resources.

I cannot define life in economic terms. I know that quality, humanity and solidarity save lives and build a society that is more humane.
That is how we have to think – that life costs and that it is worth it to spend money on caring for life. Many small and big challenges need to be addressed before a more human care for everyone can function.

If I could have met an ”emergency philosopher” to discuss all my new, complex existential questions with when I had just become ill as a young person, maybe that would have made it easier to live with a chronical illness. I needed to learn a new way of looking at things, that up until then I was taking for granted. I was so young and did not want to be ill. I did not understand the meaning of life anymore.

In Norway I think “emergency philosophers” actually exist – maybe we should try that here too?
 

Text and illustration (above): Malin Högberg

The last day of May in 2015 I was at the emergency ward in Malmö with kidney stones. Usually I get my painkillers, maybe an x-ray and I would be home again within hours.
This time all went very, very wrong.

I probably got too high a dose of painkillers in combination with Atropin, a heart medicine that made my body cramp. That is my entire body. Including my heart. The assessment is that for two –three minutes I was suffering from respiratory arrest during the cramp. After five minutes the brain damage sets in.

My partner runs out to get help and finds the staff in the surveillance room. They rush in to find me, lying on the floor, totally grey. I had fallen off the bed during the spasms and hit the whole left side of my face. Fractured eye socket, my nose was bleeding and I had bitten my lip and tongue through and my teeth and jaw were bruised. Of course the teeth are not covered by the public health insurance. A little misery of it’s own within the misery.

A few moments later they defibrillated me. That would later turn out to have been carried out erroneously.

Had I been on my own I would not have been alive today. There was no monitoring, the nurse said after every new injection that she would “check in on me after twenty minutes”. Then I would have been dead. For real.

But, I am alive now!

And in the aftermath of all fighting, all the stupid bureaucracy surrounding the reports (no wonder a lot of people never do them) and all the obstacles put up for the individual NOT to report the caregivers, I was thinking about everyone that do not have my pit bull mentality, my fighting spirit, my (inherent) anger and my will to fight to my last breath. What do they do? They succumb. They never get restitution anyway. Actually you don’t get restitution anyway, even if you do report everything.

The existential thoughts set into motion by all this and my partner’s trauma caused by him standing there watching me die, thinking he would never get to talk to me again made me decide to take action. And less than two months after the incident I started an action group, that later became an organization, PatientPerspektiv. Today it is the first organization in Sweden for patients injured in health care, and their relatives. We help, support and advice mainly in the process of reporting. We also publish patient stories and debates via our blog. We are very happy to hold responsible persons accountable in our blogposts.

In the organization we now pursue a number of issues regarding patient safety and also have several different innovations that we are trying to develop. The “patient participation” that everyone is talking about but very few actually do something about has become our special mission.

This is one of the reasons we are in the GPCC person council. And why we promote a person-centred care – the participation. Not just the alibi that talking about it gives you.

What could have been done to avoid the trauma that I went through?
To begin with you would have to think about monitoring when heart medication is administrated to a tremendously pain affected patient in emergency care. I fully understand that it is not possible to post a real nurse with every patient to make sure nothing will happen. But that is not needed anymore, it is so EASY. It is called PM, patient monitoring, all you have to do is to put a couple of electrodes on the patients’ chest and turn on the machine and it is done! Then you would have seen long before the respiratory arrest that something very wrong was about to happen.

And when they defibrillated they should have had the machine set to semi automatic. Then they would have seen that there was an arrhythmia – the heart had a rhythm but it was arrested due to the cramp. Probably. No physician that I have asked has been willing to put the theory to test in practice.

Instead a patient’s life was put at risk. Or permanent brain damage was risked. I was lucky. Many are not. Actually 3000 persons every year in Sweden do not have that luck, they die. And more than 100 000 are injured in health care.

The procedures after a medical error need to be revised. The liability for example. Why should I have to pay for the additional days in hospital and controls following the medical error? It was caused by the hospital.

Patients that have been injured by healthcare need a lot of things: a sincere apology. Initiated by healthcare and not after we have had to beg for it. An explanation as to what happened (I still do not know two and a half years later…). A follow up of the routines that they promise to change. How do we know what the caregiver is doing? A fair economical compensation. I got 5000 sek. That is how much my life is worth.

Most of all we have to be able to request accountability. Today that is impossible.

My thoughts on person-centred care
It is the only way forward for healthcare if we want to achieve higher patient safety in the future. Healthcare on equal terms for patients, relatives and staff. The needs of the healthcare and of us, the patients, would mostly go hand in hand. Work environment, moral, work culture, hierarchies and above all the patient’s position in the healthcare needs to be revised and changed.

A person-centred care is based on openness, transparency, and mutual trust – the patient’s trust in the physician and the physician’s trust in the patient. In person-centred care, the patient is seen as a resource just like the physician. The patient is seen as a valuable source of information that can make it easier for the physician to make the right decisions.

I still hear the same things we have heard for thirty years, how healthcare has to become better at listening to the patients. That is one of the keystones in person-centred care – to listen. Listen, take in and consider what the patient is saying.

In person-centred care everyone is working toward the same goal – a dignified and humane treatment. That is the first step to healing, both for the patient and for healthcare, which is rapidly getting sicker.

Writer, lecturer, floorball coach, father of two, husband, dog owner.
Kim moves forward in life with the help of an electric-powered wheelchair and a personal assistant. Never again will he be able to practice his interests from before, as exercising or renovating his house. Physically, he will not be able to support his two daughters. This is because he lost his legs and the function of his arms through a tragic illness.

An illness that could have been prevented. When Kim became seriously ill in the late autumn of 2009 everything went wrong. When he and his wife contacted healthcare he was not met by lack of competence, time or space or any other lack of resources. The problem instead was one of attitude, lack of dedication and communication. Add to that preconceived notions and unwillingness to listen to a relative describing the serious situation and you have the recipe for a failed care effort.
Legally, Kim’s injury is not only patient harm but serious patient harm. It is in essence caused only by healthcare efforts in the initial stage.
Back then, a few years ago when it recently had happened, Kim struggled. He was not that interested in living anymore when life was so drastically changed because he had not received the right care at the right time.

But in that struggle something happened, life changed for Kim. He started to focus on what he had instead of what he did not have. Then the joy of life returned. His hope was growing. Kim’s life is totally different now than it was seven years ago. But maybe it is as rich, in a new way.

Today Kim is the author of two books, he is an appreciated lecturer and a just as involved parent as before. He has been getting a lot of media attention, for example he has appeared in Swedish news and chat shows. He is also a floorball coach and participates in different councils and projects where his experiences and thoughts are of use. Kim is living as active a life as his body permits together with his family, where floorball is the great enjoyment. He lives inside a totally destroyed body, but he is feeling good. He is feeling really, really good.

Kim Andersson is an open person. He is generous, warm and has a great sense of humor. He believes that an important and educational story is best told with humor and humility. The same ambition can be found in his books. He is telling his story openheartedly and shows you how you can make the most of your life and find your passion, in your work as well as in your life. 
His lectures leave no one unmoved. And hopefully the same is true for his books. Many even say their life has taken a new direction after meeting Kim.

Why person-centred care?
When Kim learned about GPCC and person-centred care his thoughts on ”the best possible care” from his own experience fell into place.
Person-centred care is an ethic, an approach to me in my temporary role as patient. That’s right; I am only a patient in my contact with the healthcare. At all other times I am so much more and have totally different roles in life.

Two concepts in person-centred care appeal especially to Kim on the basis of his experiences. These are the concepts of listening and respect for relatives’ knowledge. In Kim’s encounter with healthcare there was no one that really listened to him in his exposed situation. Kim’s contacts with healthcare were handled by his wife. When he was lying on the floor at home, unable to stand up because of dizziness and unable to crawl because of the pain in his legs no one considered that his wife testified that this was not normal behavior for Kim. In fact, this had never happened to him before!
Please, educate yourself about the ethics in person-centred care. Find what works for you within these ethics. You will be a better caregiver and as a bonus you will have tools for succeeding in meetings in all areas of life.