Be Your Own Strongest Patient Advocate

As the manager of an Intensive Care Unit, at a large trauma center, I had the duty of being a member of our biomedical ethics committee. I was afforded a unique vantage point from which to observe our progress over the years since much of what we deal with are complex cases involving patients who lack competence, clarity or consciousness to be their own strongest advocate. And who always seem to have an abundance of family with strong conflicting opinions.

Situations like these create havoc with medical staff who must sort desperately through the layers of complexity in an effort to deliver quality care. When there’s an advance directive, we give a collective sigh of relief. When there isn’t, we collectively shake our heads. Without a personalized plan for your health, all health care decisions will be left to the opinions of others. It’s time to be your own strongest patient advocate.

Post Pandemic Healthcare Planning

If there can be silver lining to our recent pandemic, it’s that it has forced us to consider the implications of facing a life-threatening illness, in complete isolation. If you’re like me, your imagination has wrangled with the realistic potential of having to choose between being on a ventilator, alone, in a makeshift ICU or certain death. Would we… could we do it? What if we became too sick too soon to make our voices heard? Who would make that decision and what would the answer be?

From what I witnessed this past year on the frontlines, it seemed so much of the anguish suffered by the patients and families could have been eased by good care planning. So what are you waiting for? Make a commitment today to be a hero, to yourself, to your loved ones and to your healthcare community. Let me offer some observations I’ve made that might help ease you into the process of healthcare planning and allow you to be your own strongest patient advocate.

How Good Healthcare Planning Can Save Your Future

 First. Your care plan is not chiseled into a stone tablet.

It is a signal, a sign to your healthcare providers, that you have put great thought and consideration into things most precious to you. And that you have made certain choices and decisions when it comes to your life and your death. Healthcare professionals consider a patient’s care plan an invitation to connect on a deeper level. It offers them a unique patient perspective, as well as, a launch point for further discussion. You are not issuing an edict for doctors to follow without question. You are opening the door to quality care as you define it. 

Second. Getting Started.

Make a date with yourself, grab a notebook and head for the woods, a park, your balcony or back patio and take a quick snapshot of your life. Ask yourself, what drives you? Then continue as write down what gets you out of bed each day? And finally what is it that constitutes your best life? Is it children, family, music, writing, baseball, work, running, quilting, learning, reading, basketball, video games, religion? No list is too great or too short, as long as it’s yours.

Now take a moment at the other end of the spectrum and think about what might matter to you in a health crisis. Don’t dwell. This is a top-of-mind exercise. Just capture your gut responses… hospice at home, my dog in the hospital, casket, no casket, burial, cremation, gospel, traditional, acoustic music, this scripture, that poem, a suit, my favorite sweater, a wake, this park, that church, my mosque, that hymn.

No matter the method you choose, don’t forget to capture your thoughts and wishes. They will become the bones of your formal care plan that will be referred to, in the event you cannot express your own desires verbally. This is how you can be your own strongest patient advocate.

The Do’s of Healthcare Planning

 Third. Who speaks for you?

Whatever you may call it: Backup Person, Patient Advocate, Patient Representative, Ombudsmen, Durable Power of Attorney for Healthcare, etc., this will be the MOST important choice you make when creating your plan. Take your time and think it through. Here are some important considerations:

• DO start with a list of 2 to 3 people, if you can. This allows someone to decline the role and provides you with a backup to your backup.
  
• DO involve your backup person in both your care planning and your care journey. And who better to have by your side for significant appointments, events or treatments than the person you’ve chosen to step in and step up if necessary. The more you involve them along the way, the more you’ll become of one mind for future decision making.
  
• DO feel free to get creative here. My cousin out in NC is single with no children. But she also has colon cancer and has been through 3 rounds of chemo and 2 hip replacements in 5 years with multiple complications. She has developed a 3-prong approach to her advocacy. Her brother accompanies her to significant doctor’s appointments and reports the outcome to me. He’s a great listener, but hates to take notes. Nevertheless, Anne can just simply be the patient. Her best friend is her routine treatment support and I check in by phone, email and text regularly. The communication flows freely and regularly among the 4 of us, the care providers are never without a point person and Anne feels supported and represented by people who have a day-to-day grasp of her wishes and desires.
  
• DO revisit this decision often. Relationships change. People come in and out of our lives. Make it a New Year’s tradition to review the decisions you’ve made and give yourself permission to change them if necessary. Remember this is no place for passivity, courtesy, favors or obligations. You have to be you own strongest patient advocate!
  

The Don’ts of Healthcare Planning

• DON’T automatically designate a spouse, oldest child, or closest sibling because you think that’s what you are supposed to do. Courtesy and obligation have no place here and can do more harm than good.
  
  Case in point: When my father began to decline, I then suggested we review his care plan. He and my mother were of the generation that never openly spoke of these matters. Their idea of care planning was to make out a “Living Will” in their attorney’s office. Then they would seal it in an envelope, and secure it in a safety deposit box. With my mother gone, I thought it best to find out what he had in store for my two sisters and I. It was a good thing I did.
  
  Somehow, an attorney had allowed my father to designate all three of us as his primary patient advocate. He also had managed this without our knowledge or consent. When I asked him why, he simply said that he didn’t want any one of us to feel slighted. Luckily, my father had managed to avert any health disaster that would have called that document into play. In my mind, that would of been a potentially bigger disaster.  As it turned out, of the three of us, I was the only one comfortable taking on the role. My sisters were grateful for the opportunity to decline. My father and I created his final directive together. And in the end, I was able to carry out his wishes.
  
  Plan ahead and create your own ending….

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