When a loved one is misdiagnosed, it is excruciating. I know from personal experience. The actual diagnosis and treatment alone was daunting. Add to the equation unnecessary invasive risky procedures, medications, side effects (some near fatal), prolongation of the implementation of proper therapy which effectively hampers prognosis, increased nightmares, anxiety, protracted discomfort to name a few and it is the perfect storm of purposeless suffering.
As a physician, I take very seriously my oath first to do no harm. This is true of most doctors. However, as the disconnect and gap between policy and practice widens, caregivers are increasingly embattled. Why did this avoidable series of missteps take place? The answer is a multi-factorial one. Arrogance and myopia played an integral part. High volume "medical homes" and institutions encouraging use of non-doctors (aka "advanced practitioners" a misleading catch-all for enormously disparate levels of trained medical professionals) to practice beyond the scope of their individual training significantly contributed to this particular derailment. Exceptional care is not valued by the business school algorithms that have been employed to shackle physicians. Complacency and poor communication, repeatedly, prompted decisions to be made on erroneous information. The electronic medical record (EMR) praised by politicians and the endless new companies that design them are exalted billing platforms that contain distracting, useless and extraneous data that is not at all uniform between facilities and organizations. The reality is often not the dream on that front.
The litany to my loved one's story is long and continues, but I would prefer to shift the focus to measures that serve to diminish such mishaps. I cannot fix the health care system overnight -- though my lists have lists for how to maintain premium care. But, I can offer tips that a patient can control to optimize his/her own wellness while navigating it. My beloved profession is changing and in many ways not optimally. This is heartbreaking. As the number of cooks in the kitchen ever increases, I believe empowering the masses to be their own advocates is now an essential and vital tool for avoidance of error. My goal is flawless health care delivery. Yes, it is a lofty one. I will happily lead the charge.
Here Are 10 Ways to Save Your Life or the Life of a Loved One:
- The human factor and variability of personality throughout a single university or health system will never be standardized. It is human nature for a job to become routine. While one employee might be compulsive and detail-oriented, another might be laissez faire. Translation: As in any industry, there will be superb nurses, clerks, lab & phlebotomy techs, nurse practitioners, doctors, medical assistants and so forth that reflect the majority while scattered -- hopefully minimally -- throughout will be some subpar folks who slip through the cracks.
Don't allow yourself to be influenced and make decisions on minor inconveniences. For example, if a staff member takes your weight and blood pressure with your winter jacket and snow boots on because you hem and haw about disrobing, then recognize once that information is recorded in your electronic medical record a doctor will prescribe medicines based on that sloppy data. A cascade of ill effects can ensue. That blood pressure and weight will forever be in your record and may dramatically vary from your true value. Future physicians will make choices for you based on that documented result. Mistakes might be perpetuated as a consequence. My motto is always: Do things right the first time and systematically each and every time. Meaning, if an automated blood pressure reading done properly with direct skin contact is elevated, then request it be repeated manually (if time and the situation allows) and be assured the proper size cuff was used. If the numbers are discordant, then that automated cuff need be retired immediately until calibrated. Your success will be impeded by shortcuts. Repetition is your best friend and greatest protector. For example, albeit the provider, institution or patient, the variables are innumerable. Once you accept this reality, as frustrating as it is to tell your story again and again, this will serve to streamline and minimize error. Tell each and every cog in the caregiving chain of your paternal aunt's recent sudden cardiac death or that infant cousin who was hospitalized repeatedly after birth or your anaphylaxis from penicillin. Know specific details of your family history -- have it written down and carry it, if need be. The diagnostic and treatment process should be a fluid and dynamic one where your physician is constantly reassessing doses, benefits, improvements and adjustments. It is not your job as a patient to determine what is relevant information. When it comes to one's clinical course, more is better with regard to sharing of knowledge and information (as this can reduce testing).
2) Keep record in real time
- Maintain a notebook at the bedside and, in general, for many reasons.
- First, the patient in a hospitalized situation is often under stress and sleep-deprived which frequently impacts his/her memory, sense of time and understanding of plan.
Second, this can often aid in their treatment as it may provide even more current intelligence than the actual computer record. For example, a surgeon can pop in the room, examine the patient and advise on dietary restrictions, but enter the recommendation into the computer later that day. In the interim, another health care professional will stop in without the benefit of that most up-to-date knowledge. This news may alter medication changes they anticipated making, and now will compel them to contact the surgeon directly, if necessary. Third, it is so important for the patient emotionally, psychologically and physically to know who is making their treatment decisions and taking care of them -- especially in the hospital setting. So, be sure to write down everyone who engages in his/her care's name, title, date and time. Fourth, be inquisitive. You are that family member's advocate. Learn what medicine the staff is giving and why, as this will assuage your family member's anxiety and be important down the line if "some drug they gave in the hospital he reacted to," for example. Learn who that staff member is and how they add value to his/her care. The team of health professionals genuinely want what is in your loved one's best interest. Be polite and kind, when possible, as it is important to remember you are all on the same team.The more information a physician has about a patient's history the better informed their decision making which is always in the patient's best interest. Never assume.
3) No family member should be alone when hospitalized
- A loved one might have greater incentive to keep a meticulous record and be a worthwhile advocate, more so than a hired aide. However, this is very family-dependent. Certainly, select those members who have a calming effect on the relative as that is decidedly more therapeutic.
Take shifts, especially in a more protracted hospitalization. A family member can be a buffer that permits a loved one to heal and sleep and not re-tell his/her story repeatedly when concerned loved ones call. As staff visit throughout the stay, the individual can learn exercises from physical and occupational therapists to positive lifestyle interventions and so on that will all augment the underlying medical treatment plan. Knowledge is power, as "they" say.
4) Get copies of medical records as available
- Sensing a recurring theme? Promulgating knowledge is powerful in the medical sphere with the caveat: While accurate facts can ease pain, erroneous ones can perpetuate suffering.
With chronic illness, in particular, or when people are in and out of multiple institutions, having a complete medical record (i.e. imaging studies, laboratory results, EKGs...) will spare them so much unnecessary discomfort, delay and frustration. Whenever one has a study performed and appropriately interpreted, get CDs of actual films in addition to the reports to have on hand. CORRECT ERRORS in formal medical record immediately and officially at that institution in their system -- medical decisions will be made on what is in their documentation. Contact facilities who may have received the flawed ones.Different treatment centers and institutions often do not share the same electronic medical record system -- it can save a lot of time and distress having the data on hand.
5) Have third party as objective observer
- It is well-known that patients do not entirely absorb what doctors say to them in the office, so it is a good idea especially at time of diagnosis to bring along another set of ears.
Additionally, this individual can expedite logistics of visiting nurses to verifying pharmacy hours to aiding in transportation especially when a patient is most vulnerable.Remember: The universal desire of medical staff to family member is to minimize suffering. The seemingly mundane tasks of coordination details can be a tremendously significant and meaningful way to assuage fears and lighten the load.
6) Interview your caregiver
- You are allowed to speak with your doctor!
You are allowed to know the educational background and level of training of any member making decisions or instituting treatments on the doctor's behalf -- AND, to verify that the doctor in charge (or attending of record) is in agreement with any such changes or regimens. Not all levels of training are equivalent and substitutable albeit on the medical doctor track to the physician assistant track to the nursing track. There is a marketing campaign afoot to bundle all who provide primary care under one umbrella and it is misleading to patients. This is wonderfully addressed in this recent JAMA article which underscores the importance of properly labelling those who deliver primary care: Eliminating the Designation of Primary Care "Provider," http://jama.jamanetwork.com/article.aspx?articleid=2506307 If you don't understand what the support staff is conveying or it seems there is a contradiction, then request clarification. Repeat back to the physician or staff member your understanding of his/her statements. There is no dumb question. Ask specifics to be properly informed. If told by any member of the staff "the labs look good," then inquire as to what specifically has been ruled out and tested. This will serve many purposes: 1) assuage anxiety, 2) encourage a second look at the tests to make sure all was performed that was requested, 3) empower you for streamlining future events and so on...
7) Don't swoon over an institution or "world-renowned" titles
- An institution is only as strong as its weakest link.
For example, you can have a brilliant surgery performed, but if your heart is damaged and overlooked by cardiology then what was the point? Be sure specialists in cardiology, for example, are assessing the entire cardiovascular system not simply EKGs from a remote building. A patient is not a solitary lab value. If a physician or member of a team is not taking a thorough history of events in the hospital course (and complete medical history, for that matter) and performing a comprehensive physical examination repetitively, then your loved one is not being treated as a whole person and reversible issues can be overlooked. There is no substitute for a proper history and physical examination. This applies to all specialties. There should be someone captaining the ship. Review discharge prescriptions (i.e. precise dosages, follow-up details) and plan directly with the attending physician. It is often the least trained who is writing these scripts in the hospital setting. Verify what was written for was actually dispensed by the pharmacy. In a perfect world, they are double and triple checked. Be sure your medications, especially long-term ones, are constantly being assessed for side effects and therapeutic benefits.
8) Too many cooks in the kitchen
- You can impede your own care -- if you have no medical training, then self-referrals can do more harm than good. For instance, not all rashes require a dermatologist. Seeing one, when you should have seen a hematologist might delay your progress.
Insist a physician speaks directly to another physician. With the changes in primary care, in particular, and multiple care settings a whisper down the lane mentality will not best serve a patient. Again, make sure someone is looking at the whole picture. Encourage as best as reasonable and realistic continuity of care. Between the government, insurance industry, and health technology companies to name a few, the influencing bodies over the day-to-day practice of medicine are ever expanding and often with competing and conflicting interests. Take control of the measures that are absolutely within your grasp to better your own and loved one's present and future.
9) You are as important in your own health care as any link in the chain.
- Know your medicines by name -- that "purple" pill will not best serve you. Keep a timeline. Have your physician write it down for you.
It is always beneficial to be certified in CPR Do not withhold information no matter how irrelevant you may deem it to be. For instance, herbal remedies, supplements and the like should be included in your story. Be prepared to repeat yourself -- insist on it. The EMRs are not where people perceive them to be -- all offices and hospitals have different systems. Delay is to delay your own care, treatment and diagnosis.
10) Keep your own summary of your health in a concise front/back sheet to keep in wallet
- Your summary should have the revision date at the top -- keep as up-to-date as possible.
Make many copies to hand out to caregivers. Include timeline that lists all name/contact information of physicians seen and for what, when started and stopped meds, recent & past medical history, family & social history, surgical history, allergies (food, drug, environmental exposure and reaction type), hospitalizations, ER visits (contact info) etc... This is not a static document. If there is a development in the family -- update your summary as needed -- regularly! Ask your internist to approve or even copy for you a summary.
Wellness and navigating today's health care system is a team sport. Asking your caregiver to tell you what they are thinking and why and what their plan for the day is, in particular in the hospital setting, helps manage expectations. This will in turn alleviate anxiety and not compound suffering. Taking charge of and an active role in your and your loved one's health care can spare one unnecessary procedures, pain and improve overall outcome. To me, if it can be avoided that a medicine that made an individual previously ill can never again be given; then, that first does no harm.