Medical Tech News

Getting the MOST from your ADVANCE DIRECTIVES

The pendulum in healthcare has clearly swung; “Colorado passes medical aid in dying, joining five other states”. Amazingly, to me, it happened during my relatively short healthcare career. It was 1990 and I was in medical school when congress passed the Patient Self Determination Act (PSDA). That law mandated that healthcare organizations “inform patients of their rights under State law to make decisions concerning their medical care”. Now, just 26 years later, we can legally help patients die. This relatively rapid swing has produced a great deal of discussion, but also confusion – especially about “forms”.

One reason the PSDA was passed was to reduce the cost of futile end of life care. This was obviously a government consideration with the ever-increasing Medicare and Medicaid populations. On a personal level people were beginning to realize that staying alive and living weren’t necessarily the same thing. People were being, “saved” with intensive medical care – like a ventilator – only to languish in a coma.

With passage of PSDA, advance directives, living wills and medical durable power of attorney became the methods for people to tell healthcare providers what they did or did not want “in the end”. All states had their own laws governing these issues. However, for the most part it was legal for adults to write their choices on any piece of paper and have it witnessed or notarized.  These patient choices collectively became known as advance directives and essentially gave patients the right to:

  1. Designate a decision maker if they were incapacitated (i.e. Medical Durable Power of Attorney)
  2. Decide what life support they want in a terminal condition (i.e. Living Will)
  3. Choose to receive or not receive CPR (i.e. Do Not Resuscitate - DNR)

Not surprisingly, people documenting their advance directives at home, didn’t always get what they wanted at the hospital. The causes included unavailable forms, confusion about choices, family members with differing opinions and doctors erring on the side of, “saving” people rather than letting them die. This was in part what prompted the POLST movement (Physicians Orders for Life-Sustaining Treatment) and similar programs like MOLST (Medical Orders for Life-Sustaining Treatment) and MOST (Medical Orders for Scope of Treatment). I collectively refer to these as POLST forms.

The critical difference between advance directives and the POLST forms is the required signatory.  Advance directives are signed by patients (Patient SELF Determination Act) and made legal with witnesses or a notary. The “O” in POLST forms stands for “orders”, signed by a physician. Additionally, advance directives are meant for everyone to identify their choices about end of life care. POLST forms are to be completed as end of life becomes more likely due to age and disease.

To receive end of life care consistent with their wishes, everyone should complete advance directives with the help of their primary care physician (Medicare now reimburses the physician for this discussion). This discussion and the completed forms get the patient and doctor on the same page. The written document can then be shared with family and loved ones, so that everyone is on the same page – in the end. The advance directives become the guide for the patient and physician to complete a POLST form later on, as age and disease bring the end nearer.

Nearly Half of Patients Don’t Understand What You Say

The headline — Mall of the future: dinner, movies and a colonoscopy – really caught my attention. Obviously having a colonoscopy at the mall sounds a bit misplaced. However, the economics outlined in the article make sense. The other reason it caught my eye was the sequence: dinner, movie and a colonoscopy. Not to be gross, but anyone in the business of colonoscopies knows that having dinner first would be a very bad idea. Of course that type of snafu in the headline just goes to show how little people, not in the business, know about healthcare.
In the healthcare business our poor explanations to patients have contributed to high hospital readmission rates and general patient dissatisfaction. In fact, in patient satisfaction surveys (HCAHPS) only 52% of patients “Strongly Agree” they understood their care when they left the hospital (CMS Hospital Compare). Similarly, patients scheduled for colonoscopy don’t understand their responsibilities prior to the procedure resulting in 1 in 4 colonoscopies being unsuccessful (Inadequate Bowel Preparation). And what might be just “messy” for a gastroenterologist, can be a huge disaster for a patient. They missed a workday and the doctor might have missed a cancer. Our healthcare training of diagnosing and treating just isn’t sufficient when it comes to explaining.
While we wait for the training programs to retool, perhaps we could immediately start helping our patients with what they have clearly identified as a solution: video. Youtube reports over 4 billion views per day. With only 7 billion people on earth viewing 4 billion videos per day, it’s pretty obvious what people want. When you add to that the fact that images are processed in our brains 60,000 times faster than text, you get a win for patients and clinicians: i.e. videos make explanations faster and easier for both parties!!

Combining video with patient instructions insures that patients know their part in the process. It can also reduce no-show rates (17% down to 4%). Airlines figured this out long ago: show a video, save the stewardess while improving the message. Instead of wordy, time consuming explanations or misunderstood paper instructions, share a video with patients about their procedure and make everyone happy (Sample Video). They can watch a movie and have dinner after the colonoscopy.

Doctor Speak: Disconnected Communication

Doctor Speak Disconnected Communication It is generally agreed that the language of medicine was first Greek and then Latin. Today, in spite of doctor’s speaking to patients in their native tongue, the language of medicine might as well still be Greek. It is the rare lay person that knows their hippocampus from their gluteus maximus. And while most doctors don’t speak Greek or Latin, too often they use “doctor speak” for body parts, diseases, and treatments. This leads to a big gap between what the doctor knows and what the patient understands.

Doctors are not necessarily smarter than lay people; they just know and deal with things that are generally unfamiliar or uninteresting to people. If it is Escherichia coli causing infection in the bladder is of great interest to the doctor. The lay person only cares if it burns when they pee. To further disconnect the two, just add the name of the prescribed treatment drug to the conversation. It takes a doctor to figure out the cause of a problem, but it takes an interpreter to help the doctor translate
“doctor speak” into laymen terms.

Another reason – rarely discussed – causing disconnects between patient and doctor communications is payment. Doctors do not get paid for explaining things to patients. Sure, they care about their patients, but they get paid for diagnosing and treating their patients, not talking to them. When they submit their bills to insurers, and the federal government, there aren’t any billable codes for “explained vertigo diagnosis to patient for 10 minutes”. There is a billable code for “vertigo”.

In a foreign country speaking louder and slower doesn’t change the language discrepancy. Similarly, having a doctor say the same thing in “doctor speak” three times doesn’t make it more understandable. When it comes to one’s health, that lack of clear understanding can lead to poor health outcomes, unnecessary return visits and increased cost.

In spite of huge technology advances in medicine and elsewhere, doctors are still explaining things with “doctor speak” and no translator. Misunderstanding language in a foreign country may be only embarrassing or funny. Misunderstanding disease processes and treatments could be deadly. In a world where foreign languages can be translated with an app on a smartphone, isn’t it time “doctor speak” be translatable? The medical community needs to utilize modern technology, video, graphics, and animations to help patients better understand what ails them and how to fix it.

Patient Education Bill of Rights

Patient Education Bill of Rights A friend of mine was just diagnosed with Parkinson’s disease. He saw two neurologists in the same practice on the same day. They both asked basically the same questions, conferred in the hall, and then came in and said: “we believe you have Parkinson’s”. I called that a dx-bomb or diagnosis bomb!

Any dx-bomb is bad enough, but when it isn’t followed with some serious Q&A, the dx-bomb can be emotionally deadly. For my friend, the dx-bomb was followed by: “we are going to put you on a new medication”. And that was the end of their medical care for the day.

Surely every adult has some vision of what it means to have Parkinson’s. Likely none of those visions are pretty. Doctor’s, perhaps understandably, feel they are finished when they determine the diagnosis. Unfortunately for patients, the doctor’ finish is their beginning. Patients are not so much interested in how the doctor got to the diagnosis but rather where the diagnosis will be taking them.

I think it is time that something is done to ensure that dx-bombs are always followed by patient education. I think it is time that patients receive help understanding their conditions and treatments rather than just being treated. Accordingly, I propose:

Patient Education Bill of Rights
All patients have the right to medical condition and care instructions:

  • In their native language
  • At their level of understanding
  • That help them hear, see and understand
  • That allow sharing and review of instructions with loved ones (i.e. electronic)
  • Which identify what, when and how testing and care will be done
  • Which identify what the patient needs to do, as well as when and how
  • That include alternatives, risks and benefits of all testing and treatments
  • With ample opportunity to discuss any questions with their caregivers

What do you think?

Family Matters Now and in the End

My incredibly intelligent father, with a PhD in chemical engineering and over 50 US patents to his name, called the other day to discuss his living will. Like Dr. McCoy in Star Trek, especially compared to my dad, I like to say “I’m a Doctor not a…”. However, in this particular instance my twenty years in emergency medicine gave me the ability to actually be “smarter” than my dad. The sad part is that my smarts came at the expense of participating in too many people dying and too many conversations with families that didn’t know what the dying person wanted.

Interestingly, after knowing my father for 57 years, I still didn’t know some of his preferences for end of life care. Fortunately having the conversation was easy since we had many similar conversations about my dear mother. She died earlier this year after too many health “care” episodes including hip fractures, dementia and pneumonia. Gratefully, she died at home with my dad and my sisters near her side. While it was difficult for my non healthcare family members to witness a death, they all agreed it was the right time and right place. Sadly, that’s something most families can’t say about their loved one’s death since over 70% of people die in a hospital or LTC facility even though over 80% of people want to die at home.

I appreciate that the conversation about the end of life is difficult. But I know the conversation is nearly impossible when the person becomes my patient and the family is waiting in the “quiet room”. No one expects to be an ER patient, much less the family member of a dying ER patient. When I talk with the family they are consumed with the shock of a nearly dead loved one. Not surprisingly, they can hardly comprehend, much less decide, about things like “did he want to be on a ventilator?”. The end result is usually indecision resulting in painful, expensive and often futile care. In fact, in 2014 Medicare spent $50 billion in the last 2 months of people’s lives. Fifty billion dollars and the outcome was the same: the patient was dead. And in that 2 months, dying people were in the hospital instead of with their families.

That’s why the conversation needs to be started NOW and it needs to involve moms, dads, daughters, sons and loved ones of ALL ages. You do NOT need a doctor in the family to start the conversation, you can utilize resources like Essential Choices to understand the issues and document your choices. You also do NOT need an attorney to complete and finalize your advance directives. While very state has statutes about advance directives, you do NOT have to have any special form. When you’ve had the conversation with your loved ones, you should then make sure your doctor knows your choices. Don’t worry about taking their time with this conversation, this year Medicare started paying for it.

I like what Dr. Byock said: “I have an advance directive, not because I have a serious illness, but because I have a family.” Do yourself and your loved ones a big favor now. At the very least, start the conversation about “what if” so you don’t end up like a deer in the headlights staring back at me some horrible day.