Author Archives: Dianne Savastano

Recommended Reading: Rare Diseases

My friend and colleague Sue Nemetz is President of The NemetzGroup, a life sciences commercial and strategy advisory firm. Recently, TNG published a fascinating newsletter about rare diseases and the development of medicines to treat them.

“Rare diseases (AKA, ‘orphan diseases’) are unlike any other. For a host of reasons — not the least of which is the human toll these take on those afflicted and their families — the discovery, development, and commercialization of medicines in this area needs to be approached in ways that are different than what one might do with more established diseases affecting much larger populations.”

Read the entire piece here.

Three Documents You Need… For Your Parents and Your College-Age Children

  1. HIPAA Release Form 

    Recently, my friend Kathy encountered a frustrating experience with her step-mother who had fallen and was in the emergency room facing a decision about surgery. Kathy lives several states away and when she called the ER, the professionals she encountered were reluctant to share any information until they asked her step-mother for permission to share her healthcare status.This led to significant time delays and multiple phone calls, all of which could have been avoided had Kathy’s step-mom previously signed a HIPAA release form and given it to Kathy to keep on file. With that in hand, Kathy could have called and said:”Hi, I’m Kathy, Mrs. Smith’s step-daughter. I live in Kansas and can’t be at her side right now. I am a physician and I’d like an update on her medical status and appreciate that you must protect her privacy. She signed a HIPAA release form specifically for occasions like this. Can you provide a fax number to send this to? Once you are able to retrieve it, I’d like to call back so we can discuss her care.”

    A HIPAA release form is also critical for your adult children (over 18), particularly if they live or go to school far away and may need your assistance in the event of a medical situation. Here as well, having one of these can save a great deal of time and angst.

  1. Health Care Proxy 

    A Health Care Proxy grants another individual permission to make healthcare-related decisions for you in the event you can’t make them for yourself. In Kathy’s case, her step-mom was awake, alert and able to decide on her own about the recommended surgery. But what if she were unconscious and not able to decide? With an executed health care proxy in hand, Kathy could have shared the document via fax/email and made decisions immediately.Some health care proxy documents contain sections in which you can include what you might want – or not – for end-of-life care. Topics such as resuscitation, intubation, feeding tubes, etc., are addressed. If your document does not contain such information, you may complete other forms called a Living Will, MOLST Form or a 5 Wishes document.It’s grown increasingly common at the time of hospitalization to ask the patient if he/she has a designated health care proxy and, if not, to request that one be completed on the spot. I prefer a more thoughtful approach in which this is discussed ahead of time. This way, there’s an opportunity to inform the proxy of your wishes, as well as give the other person a choice in deciding to take on this important responsibility.

    If you are having a planned admission to a hospital, bring an executed copy with you so that there is no confusion with duplicate forms being completed. Also, be sure your primary care physician has your health care proxy on file.

    Lastly, if you have an executed document, have it readily accessible to share. I found my dad had given me a copy but the originals were in a safe deposit box. In a crisis, had I not been available, my mom would not have been able to make a trip to the bank to obtain it. I have a copy of the executed document scanned onto my computer so that I can easily fax or email it (a copy will suffice).

  1. Power of Attorney 

    Power of Attorney allows a designated person to make financial decisions for you in the event you cannot make them for yourself. In a healthcare crises or in the case of a slow decline from illness, a person may lose the ability to make decisions that require some form of financial transaction such as selling assets, hiring private help in the home, moving to an assisted living environment, etc. Having such a document also allows one to easily access financial resources, something that can streamline decisions and, again, save a lot of anxiety and time.In my family, my parents serve as health care proxy and power of attorney for each other and I am the alternate. In families with multiple siblings, I’ve seen different roles assigned to different siblings for different parents. In these situations, having designated roles has been instrumental, especially when siblings disagree about what mom or dad may want for healthcare and how to spend their money on their behalf.

Conclusion

As you assess your roles in your respective families, such as daughter or son, mother or father, granddaughter or grandson, niece or nephew, consider what would happen if a loved one for whom you have some level of responsibility were to become ill. Give yourself the gift of being prepared for such situations by knowing about the documents discussed above and having them in place.

What to Say When They Call You “Dear”

Over the past ten years, my clients and I have had numerous encounters with healthcare professionals in which the professional uses terminology that is inappropriate. Most commonly, this involves calling the client “Hon,” “Dear,” or “Sweetie,” and/or commenting on how cute he or she looks (often several times).

It makes me uncomfortable. I just don’t appreciate seeing these wonderful and dignified older adults, who have a wealth of life experience, being treated in an infantilized way. And so I began asking my clients how they felt when someone talked to them this way. Over and over, they told me:

  • I didn’t like it but I was afraid to say something.
  • I just didn’t know what to say.
  • I felt like a child and I know I’m not.
  • I wondered if they thought I had dementia.

I began to seize the opportunity to change the status quo and Challenge the Process by speaking up. Here’s what I say when I encounter this type of behavior:

  • Mr. T. prefers to be called “Mr. T.”
  • Excuse me, Mr. T. prefers to be called “Sam.”

If this type of assertiveness makes you uncomfortable, I understand – I don’t find it easy either! Reactions range from heartfelt apologies to outright defensiveness, so you never know how your comments will be received. Sometimes, depending upon the response, I may add:

  • I appreciate you were being kind, but I thought you’d want to know that it makes my client uncomfortable.
  • Sometimes such terms lead an older adult to feel as if their being treated as a child. I thought you would want to know that for the future.

My clients, too, have begun to speak up for themselves, as a result of our conversations. They may say something like:

  • I know you meant well by calling me honey, but I prefer to be called Sam.

I’ve also found myself sharing information about who Mr. T was as a younger man, as a way to demonstrate his accomplishments and preemptively curb the behavior. I say things like:

  • Before retiring, Mr. T. ran a very successful accounting practice.

Older adults deserve our respect

Approximately 60% of my client base falls into the “older adult” category, defined as those who are over the age of 85. In our culture we use many different words to describe this demographic and I confess to having struggled with most of it until I settled upon “older adult.” It is my way of demonstrating respect for an individual’s age and the vast reservoir of experience they represent.

Words like “honey” or “cute” are often used to describe children. When they are similarly used for older adults, it can be perceived as condescending (whether or not that was the intention). As important, it can lead to attitudes that may ignore the older adult’s wishes or thoughts, again, as if they were babies.

I know that these terms of endearment are rarely spoken in a mean-spirited way. On the contrary, they are often intended to be kind and comforting. However, in healthcare settings – a place where healthcare consumers already tend to assume they have less power than those around them – this is problematic. My clients have often relayed how they felt patronized and offended, but just didn’t know how to handle these encounters.

Recommendations for interacting with older adults

In writing on this topic, I am hopeful that raising awareness about the issue will result in positive change. Here are a few ideas:

  • Check yourself and see what your habits are when addressing older adults. Self-awareness is key to changing any behavior.
  • Recognize that while endearing terminology may be fine with you, the other person may feel differently. They may be too polite to tell you how irritated it makes them.
  • Recognize that such terminology, although well meaning, can be infantilizing and dismissive to what an older adult has to say.
  • In first meetings with new people, err on the side of formality; address others as Mr./Mrs./Ms. if you know their last name. If the other person thinks it is too formal, they’ll let you know and will guide you as to what they should be called. If they accept such a greeting, use it until you’re told not to.
  • If, as a manager, you notice an employee addressing people inappropriately, take the initiative to educate and coach them on the topic of appropriate greetings. Monitor improvement and hold others accountable for their actions.
  • If you, like me, have people in your circle who refer to older adults in infantilizing ways, explore what they find admirable about that older person and encourage compliments on their own merits. Examples are:
    • You’ve accomplished so much in your life.
    • Your experience is amazing.
    • You are a joy to interact with. I enjoy spending time with you.
    • I admire your positive outlook on life.
    • I admire your spirit.
  • Model the way, leading by example. My preferred practice of exemplary leadership as outlined by my favorite researchers on the topic is to Model The Way. Kouzes and Posner say that leadership is not about personality; it’s about behavior – an observable set of skills and abilities. There is nothing more powerful than you demonstrating respectful behaviors toward others!

Conclusion

Communicating the difference between celebration of age and condescension takes time and skill; it is a fine balance. If we hope to get past the preconceptions that exist in our culture, we need to reflect on our own biases and openly discuss with others how their words make us feel.

I challenge you to speak up and proudly celebrate the experience and accomplishments that come with each day of living. Do this for your clients, your family and yourself.

Health Care Decisions: Black and White vs. Gray Areas

Black and white scenarios are simple. They usually involve just one decision and there is some predictability in their outcome.

Gray areas, on the other hand, involve several, often interconnected decisions and vary based on the preferences of the people involved as well as their particular circumstances. These scenarios are often unpredictable and can be confusing or stressful. They may, at times, even feel unfair.

Consider the case of my client, Jim. He was approaching 65, planned to remain working and had health insurance through his current employer. His wife, also 65, was retired and had access to retiree medical benefits for both herself and her spouse. Jim had to choose among the following options:

  • Stay on his employer-sponsored plan
  • Access traditional Medicare and its suite of associated products
  • Revert to his wife’s retiree medical coverage

He was confused.

Another client was diagnosed with a blocked cardiac artery. He also had three options presented to him:

  • Take several cardiac medications and be closely monitored for symptoms
  • Have a cardiac catheterization procedure that could involve insertion of a stent to open the blocked artery
  • Consider the need for open heart cardiac surgery as a possibility if stenting was not appropriate

He wasn’t sure what to do either.

A third client, Barbara, was caring for her spouse at home. He had Alzheimer’s Dementia that had now progressed to the point where caring for him alone was becoming unsafe for Barbara and her husband. Her options were as follows:

  • Share caregiving responsibilities with her children
  • Hire private help in the home to assist her
  • Research and possibly move her husband to a Memory Unit in an Assisted Living facility

All of these options posed dilemmas for her.

How to sort through the choices available

Clearly, and in all three of these examples, the decisions to be made are in that murky gray area of “it depends.” How then, does one decide? Here are a few suggestions to help you and your loved ones through the process:

  • Gather as much information as possible


    For the gentleman choosing his insurance, a spreadsheet that compared benefits and the cost of each option helped him decide.For the man with cardiac disease, a long discussion with his cardiologist, during which she outlined the risks and benefits of each choice based on the scientific literature, was helpful.For the woman caring for her husband, a discussion with her children about their availability to help, as well as researching the cost of in-home care or a move to a Memory Unit was invaluable.

  • Don’t go it alone

    These are big, potentially life-altering decisions; there is no reason you need to make them alone. As I’ve mentioned in previous newsletters, there is tremendous value in having a Care Partner who can attend physician appointments, acting as another set of ears, a scribe, and a helper.A Care Partner is equally useful within these gray areas of decision making. They can help by:
    • Listening
    • Helping you to identify all the options available
    • Helping you think through the implications of each decision
    • Helping you reach a decision you can live with
  • Superimpose your preferences on the options availableThe man facing an insurance decision liked his employer-sponsored plan and was not looking forward to a change that might impose an administrative burden on him.The man with the artery blockage wanted to resume all his activities and did not want to be held back by symptoms of angina that might occur.Barbara had a preference for caring for her husband at home.

  • Listen to your intuitionOnce you’ve gathered information from as many sources as you feel comfortable with, listen to your gut about what the best decision – for you – may be. We’re all different; intuition is about acquiring knowledge and then making decisions through emotions. So ask yourself: “Is what I am about to do in keeping with my values?”In the insurance example, Jim valued an outcome in which he would pay no more than was necessary for what he thought was beneficial. He felt that his current plan was very valuable.For the man with the cardiac issue, he valued independence and vibrancy. He wanted a solution that would restore that.In Barbara’s case, she valued the commitment she and her children had made early on after her husband’s diagnosis: to care for him at home if it did not place any undue burden on her or her children.

  • Do the best you can; recognize that decisions are often iterativeJim had the option of continuing on his employer-sponsored plan for now and putting off a decision between traditional Medicare and his wife’s retiree benefit when he retired two years later.The man with the artery blockage wanted to have the catheterization and hoped a stent could be inserted. If need be, he will embark on surgery.Barbara decided to care for her husband with the help of her children and outside assistance. If the time comes where a move to a Memory Unit is needed, she will cross that bridge then.

Conclusion

As you and your families are presented with health care choices, always remember that clear cut, black and white decisions may not be possible.

Learning to live within gray areas of decision making by using some of the suggestions above can help you make choices that are both sound and comfortable.

Our Health Care Is Our Own Responsibility

Dianes DadIt all began two years ago, when my dad noticed a growth under the skin of his upper right arm. This “lipoma” (a benign, fatty tumor) didn’t bother him and so we, in collaboration with his physician, decided to do nothing about it.

Eighteen months later, he started to complain of a strange, sporadic tightening sensation in the right arm followed by an odd feeling in his head (“a sort of lightheadedness”) that would go away when he rested for a few minutes.

We went back for a re-evaluation and, thinking the lipoma was now pressing on the artery of his arm, had the tumor removed.

But the problem didn’t go away. Both my dad’s primary care physician and the surgeon who had removed the lipoma continued to speculate it was a vascular issue rather than cardiac, since his symptoms were on the right and not the left.

Finally, after a thorough evaluation and medical record review, a vascular surgeon suggested that maybe it was cardiac, even though the symptoms were “on the wrong side.”

One cardiology evaluation, two stress tests and an angiogram later, it was determined that my dad had two coronary artery blockages and would require bypass surgery, something that was performed successfully earlier this month.

Whew! My dad is home now and recovering beautifully. Still, I don’t mind telling you that when the ordeal was over and I had some time to think, I found myself feeling more than a little bit embarrassed.

Why had it not occurred to me to pursue a cardiac evaluation earlier? After all, the signs were all there: Shortness of breath when walking; lightheadedness that resolved immediately with rest; pain in the upper arm.

And while my dad’s cardiologist tried to soothe my feelings by asking me when I had become a cardiologist myself, I couldn’t help but wonder how I had missed the obvious.

Anchoring Mistakes

According to Dr. Jerome Groopman, fifteen percent of all people are misdiagnosed as a result of “errors in thinking” by physicians.

He explains that within the first 18 seconds of meeting with a patient, a physician will generate an idea in her mind of what’s wrong, often interrupting the patient’s story in the process. This “anchoring mistake” may cause the physician to fixate on that snap judgement.

This judgement might be based on…

… the first thing the patient says;

… something in the medical records that somebody else concluded previously;

… not listening effectively;

… some combination of all three.

In my dad’s case and given that, as the cardiologist explained, “he had an atypical presentation of a very common disease,” it’s easy to see why, initially, we were all led down the wrong path.

That’s why Dr. Groopman wants us, as patients, to understand how physicians think and to encourage our doctors to think more broadly. Specifically, he suggests asking two critical questions when given a diagnosis:

  1. “What else could it be?” This can help prevent the anchoring described above.
  1. “Could two things be going on simultaneously?” This may encourage a thought about the possibility that there is more than one answer for a common symptom.

Lessons learned

Over the past two weeks, I’ve relived every conversation I had with my dad and his doctors, going way back to the appearance of his first symptoms. Here then are some suggestions to help you and your loved ones act as your own best advocate when you suspect something may be wrong:

  • Pay close attention. Write down when symptoms occur, including what else might be going on when you experience them (e.g., “It happens when I walk and goes away when I stop.”). This may help in identifying a pattern you can share with your doctor.
  • Try not to self-diagnose. Let your physician do her job, asking questions, listening and assimilating information.
  • Gather all relevant medical records. This is especially important if you receive care in multiple health systems that don’t communicate electronically with one another. It also helps any specialist you see be more efficient and may prevent duplication of a diagnostic test.
  • Share your entire story. If your physician interrupts too soon, state that you are not sure she is listening to the whole story and you want to be sure she has as much information as you do about your body.
  • Ask Dr. Groopman’s questions. If a hypothesis is developed or a diagnosis made, and a plan of care is outlined, ask the questions Dr. Groopman suggests: What else could it be? Could two things be going on simultaneously?
  • Speak up and walk away if necessary. If you don’t feel heard, muster up your courage to politely say so: “I’m not feeling totally comfortable that you’ve heard all I want to tell you. I’m unclear as to why you’ve come up with this diagnosis and plan of care. Can you help me to understand more fully?” If you continue to remain uncomfortable, pursue another opinion.

Conclusion

My experience with my dad – something that occurred despite the talented group of physicians with whom we worked as well as my own professional focus – reinforced for me the importance of acting on our own behalf, pushing back when things don’t seem right and looking beyond the obvious.

I am forever grateful for those professionals who listened, evaluated, communicated and came up with the right diagnosis in time. I, for one, will be more vigilant in the future!