“All you need is love,” sang the Beatles many decades ago. It’s a song still sung today. And for good reason. The tune is catchy, and the message is hopeful: “There’s nothing you can do that can’t be done.”
Were it that simple. Love, after all, is our greatest joy. But it can also be complex and complicated. Loving someone “for better or worse, in sickness and in health,” means taking the good with the bad. And that’s not always easy.
Many—if not most—of us will have to take care of the person we love during an illness. It might be for a day, a week or even longer. Some may find it a daunting challenge. For me, it’s a call to action.
Over the past two and a half decades, my husband has been hospitalized many times. Often, it’s involved life-threatening illness with long periods of hospitalization and recuperation. In times like that, I do everything in my power to help him get better. Love is the starting point for advocacy.
Along the way, I have learned a lot about the hospital setting and the very real impact that families can have in making sure their loved ones get the best care. Hospitals are bureaucratic and scary places. For patients and their families, it can feel like being tourists lost in a strange land, not knowing the customs, the language or the culture.
Patients are weak and flat on their backs. They are usually in no position to advocate for themselves. Doctors are busy, rushing from one patient to the next; nurses are stretched, trying to meet the many needs of their patients.
Families can make a difference. They can represent the patient’s wishes and needs when their loved one is unable to speak for him or herself. Knowing the patient better than anyone else in the hospital counts for a lot when navigating the impersonal environment of a hospital setting. Families—working as members of the care team—can also connect the dots because doctors, quite honestly, don’t always communicate well with one another.
Families can fill in the blanks when the sick patient doesn’t fully comprehend everything being said or is not able to remember it later. They also can bring information, perspective and insight that patients may forget or are uncomfortable sharing themselves.
And when the patient goes home, continued care must involve the family to ensure instructions are followed regarding medication, doctor visits, exercise, restrictions, and more.
Much is written about patient-centered medicine. But research shows that patient and family-centered medicine provides the best clinical outcomes, increases patient satisfaction, lowers costs, reduces risks of readmission and can even save lives.
Families can and do make a real difference. They start with love and build from there. There’s one more line from the Beatle’s song that applies here: [There’s] … “no one you can save that can't be saved.”
The one you help save just may be the one you love most.
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Bonnie Friedman is author of Hospital Warrior: How to Get the Best Care for Your Loved One and host of the podcast Hospital Warrior: Advocates and Experts on the Whole Care Network.
Fake it ‘til you make it! That adage of the 1970’s may seem like a cliché now, a silly relic of a bygone era. But in reality, we fake it regularly when we lack full confidence but still manage to push ourselves to rise to an occasion—a job interview, negotiating the price for a new car or holding our ground in an important discussion.
Many people find it intimidating to talk to doctors. They get tongue-tied, afraid to ask questions or worry they’ll say the wrong thing. Research bears out the phenomenon. One study compared the frightened behavior of patients to that of hostages bargaining for release.
Whether you are the patient or it’s someone you love, getting good medical care shouldn’t sink to that level. That means speaking up even when you feel nervous. Doctors often rush from one patient to the next; some are gentle in their dealings, but others seem brusque and impatient. Patients and families can be left feeling too demeaned to even ask a question before the doctor is out the door.
That’s when it’s time to fake it. But you must be prepared. Patient advocacy requires many things – time, attention and perseverance to start. Diplomacy and respect are other essential ingredients. Effective advocacy also requires a strong dose of chutzpah, that wonderful Yiddish word blending personal guts and gumption.
I have been advocating for my husband for more than a quarter-century through multiple hospitalizations and illnesses. One thing I have learned is that my role is as important as the doctors and nurses in ensuring he gets the best medical care. Acting on that knowledge means working with medical professionals as an equal, trusting my instincts and speaking up when I have questions or think something is wrong.
One of the most important jobs of the advocate is connecting the dots – asking the right questions, paying attention to details and making sure that the entire medical team is on the same page. Taking up the charge requires confidence. That can start with basic research to better understand the patient’s condition and be poised to ask smart questions.
Keeping good notes and staying organized helps the advocate pay attention to details and follow up on questions or concerns. Doctors don’t always communicate well with one another, and nurses are sometimes left out of the loop. Issues can fall between the cracks, and misunderstandings can affect patient care. A well-informed advocate can help keep communication flowing.
Advocates who are strong, persistent and professional get a better response from doctors too. When you act with diplomacy and respect, you are more likely to receive those same courtesies in return.
When you put it all together – education, organization and perseverance – confidence in your role as an advocate can grow. The more you do it, the better you get at it. Remember, you know the patient better than anyone else in the hospital. That counts for a lot in a setting that can seem bureaucratic and impersonal.
Draw upon your strengths, life experiences, street smarts and common sense. You can apply that sense of assurance to your advocacy role.
Prepare questions in advance; practice making your case in front of a mirror. If need be, assume you are an actor taking on a role. Remember that even a shaky start is better than no start at all. Before you know it, you won’t have to fake it at all.
Bonnie Friedman is the author of Hospital Warrior: How to Get the Best Care for Your Loved One and host of the podcast Hospital Warrior: Advocates and Experts on the Whole Care Network.
