One difficult situation illustrates the process I am suggesting. If you visit your doctor with a serious problem and have some investigations and are told that the news is bad, how should you respond? ‘Bad news’ probably means that you have been diagnosed with a life-threatening condition or a long-term deteriorating illness.
How can you best respond?
Ask as many questions as you can. Get as much information as possible. Write down the details. Get a diagram if appropriate. Ask for sources of reliable information online.
Take a deep breath and seek out a good friend or a close family member to share this information. If you have been told that the outlook is very poor and there is nothing that can be done, then it will be a challenge to research any available treatments by yourself. In such dire circumstances the brain tends to ‘freeze’. So, seek out a disinterested party who, although sympathetic, is not as emotionally involved as you. Someone with some medical or scientific knowledge is better placed to help but any determined, intelligent person can pursue research on your behalf.
Let me share some stories of how other people have reacted.
David, a lawyer in his sixties, was told by the hospital staff who diagnosed his rare form of aggressive non-Hodgkins lymphoma (a kind of cancer of the lymph glands) that the disease was very advanced and nothing more could be done for him and that he should go home and prepare his will. David was so shocked that he simply accepted this news and did not query it. His daughter Sarah however, who was just graduating from university, refused to believe that no treatment of any kind was available. She busied herself researching all the information that was available in the reputable medical literature (see below) concerning the advanced stages of her father’s condition.
Eventually Sarah came across reports of a clinical trial being conducted in this condition in California. Her father, being in the UK, was not eligible to join this study. Undeterred, his daughter contacted the trial manager in California to ask if there was anything similar available in the UK, either in terms of a trial or experimental treatment. Eventually she was able to establish that a few patients were receiving this treatment at a UK centre on a ‘named patient’ basis. These patients may qualify on compassionate grounds and their condition will be closely followed. David managed to get an appointment to see the treating team and was eventually accepted as a test case. To the great relief of both David and his daughter Sarah there was a good response to treatment. Without Sarah’s diligence and determination David would almost certainly have died.
This fortunate outcome is not always available of course. But worth a try.
Your health is your greatest asset and worth fighting for.
Here is another cautionary tale. Susan was seven months pregnant when she fell and broke her wrist. She was taken by a friend to her local Accident and Emergency Unit. She checked in and told the busy Receptionist what the problem was and gave her name. After waiting for eight hours to be seen Susan went to find the nurse in charge and find out how long she might have to wait. The nurse looked at her list and could find no mention of Susan’s name. The receptionist had simply failed to record Susan’s case: human error. So, Susan had been waiting for all that time with no expectation of ever being called. The lesson? Make sure the staff in A&E know you are waiting and check regularly where you stand in the queue. All this is easier if you have an advocate, friend, or family member, who can check on your behalf.
The conclusion I draw from these two stories is that it is vital to participate in your own care. You are the patient most important to you. The medical team needs your help.
In addition, as a clinician myself, I would add that it helps a great deal to learn how hospitals work, which different levels of staff, and their experience, form the healthcare team. Identify a particularly empathic and communicative member of the team who can be an ally when you don’t understand what is happening. Doctors are human and can be as diligent or as indolent as any other worker.
In Martha’s case it seems a cardinal error not to have included her parents in the knowledge that Martha’s condition was deteriorating. Family members should in my view be regarded as part of the healthcare team. To me this story illustrates the importance of having the courage to research intelligently and confront the healthcare team with this knowledge.
You can make this easier for all concerned if you manage to avoid being too personally confrontational. But sometimes this may not possible when a life is at stake.