managing health care

When a person is first diagnosed with a serious illness, it can be quite stressful -- both for the person who is ill and for family and friends. Likewise, when a pre-existing medical condition worsens or the medical situation changes, it can be very difficult to get the information you need and discern the best treatment options. And those are just the practical concerns.  The emotional impact of such a diagnosis or of a worsening condition, too, is jarring.  

Questions and worries come to the fore, rewinding and replaying in our thoughts, increasing anxiety and decreasing the energy required to get through this difficult time.  Sometimes it's a good idea to write the questions and concerns down and address them one by one.  

Listening to thousands of patients and families In over 35 years working as a nurse has acquainted me with some of the many questions and concerns which rise to the surface at such a time. 

Practical questions include: 

What should I do? Who can I talk to? 

How can I get the information I need to be an active participant in my health care decisions? 

Are there effective treatments? What about side effects? Medications? 

How can I advocate for myself? Do I need to ask a family member or friend to help advocate for me?

What about web sites describing my illness and treatments? How can I be sure the info is reliable? 

Are there any fairly reliable sites to check out before instituting a wider search? What about research studies? How do I find the ones which might affect me? 

Other concerns come to the fore as well, some of which have personal, social, or family ramifications and address life changes sometimes affected by worsening illness or advanced aging. These concerns include: 

What will happen to me/us? How will I/we cope? 

How can I get the medical help I need? The community assistance? Will I be able to afford it?

How will I get to my doctor appointments, chemotherapy, or radiation? 

What questions should I ask my doctor? My insurance company? My family? 

What about finances? And caregiving? Is help available? Will I be able to work? 

Continue to care for my children? Grandchildren? Spouse? Parents? 

Will I need to choose an alternate living situation? Make some changes in driving, daily activities? 

How about medical decision making? Do I need a living will? A power of attorney for health care? 

Will I become a burden to my family and friends? Or an example? 

Is there some way to grow through all this, to become stronger? To heal old wounds? 

To communicate more lovingly and effectively? 

These questions and more swirl around in our thoughts and minds and during discussions with loved ones in times of illness, aging, or increased frailty.  Questions not addressed during this introduction to Navigating Illness will be covered in those which follow. 

I hope the answers and reflections you find will help guide you discern you next steps and address future decisions.  Mostly, I hope this information will address your concerns, ease worries, and help you attain the knowledge and support you need. 

Getting the Information and Care You Need 

So, you've just been diagnosed. Or maybe your health or that of a loved one has gradually worsened. You need more information on what to do next but are unsure how or where to get the information. Should you ask someone you know? Talk to your doctor? Find some helpful web-based resources? Or all of the above? 

With so much on the table -- and such potentially momentous life changes in view -- it can be difficult to figure out what to do next. Obviously, the first order of business if you've just been diagnosed is to find out more about the illness, its treatment, and how it might be expected to affect your life or the life of a loved one.  Don't be afraid to ask questions and seek information from your physician, health care providers, or community based resources.  Advocating for yourself and for a loved one is one of the most powerful ways to assure the best possible health outcome.  

Many people worry about insulting a health care provider by questioning what they are doing or asking for more information about a process, test, procedure, or treatment.  In fact, it is not only important, but also life-saving to do so.  If you don't feel confident enough to ask forthright questions of those who provide your health care, invite someone along who has no such qualms.  (The old good cop/bad cop approach is till quite handy.)  

The tough truth is that health care today is rationed, more often than most of us know. Someone who has no one to advocate for them gets less good care than someone who has a "guardian angel" watching over them. The single best advice I have for anyone who has a loved one in a hospital or institution is: Friends don't let friends go to the hospital alone.  And friends and family members should not leave a loved one in a long term care or rehab facility without a lot of close watching over (even by phone), question asking, and accompaniment.   

Health care providers are not meanspirited, just overly busy and sometimes inadequately trained. (Or just plain arrogant.)  Accidents and medical malpractice do happen, and more often than most people think.  This is not meant to be alarming, just informative.  As a legal nurse consultant, I've seen my share of cases which were entirely preventable, if only patients and family members were tooled to speak up and speak out. If you think you should say something, say it.  If you are uncomfortable with a doctor or nurse doing a procedure because they don't seem to know how, say something.  Insist the procedure is done by someone with the requisite experience.  

Mainly, just be alert and protective.  Ask for explanations.  Request info on labs, procedures, and next steps. Take notes.  If you don't understand something, say so.  You have a right to clear information presented simply.  If someone seems to be in too much of a hurry to answer your questions, request another time frame in which you can ask them.  

If you are the patient, please invite someone you know and trust to watch over you when you are hospitalized: it's tough for any of us to adequately advocate for ourselves when we are ill or medically vulnerable.  Plus, malpractice aside, it just makes sense to invite another set of ears (and hands for note-taking) to any important medical appointment.  Family members and friends take note: the patient is in charge. Unless instructed otherwise, you are invited simply to listen and take notes.