Being a patient or a carepartner can be a lonely, powerless
There’s no high powered legal or lobbying team to help support
you in your or your loved one’s health care journey. There’s no PR team at your
beck and call. There’s no advisory board, no executive committee, no
assistants, no chatbots or AI-powered technology coming to the rescue. There’s
no funding or a company sponsoring your efforts.
There’s no course in how to be a professional patient or
There’s no one there in the stillness and dark of the night, when
you are in the quiet of your thoughts, the privacy of your personal space,
where there are fleeting moments that you don’t have to be strong and
courageous. There is no one there to console you, support you as you lay there
willing to make a deal with the devil for the slightest glimmer of hope, the
slightest bit of clarity, or slightest bit of peace.
As a the carepartner to a loved one who is sick or disabled, many wouldn’t second guess charging head first through a thousand wielded swords if it meant a hope or a cure.
As an advocate, the majority of the work you do is self-created,
self-supported, and unpaid. A calling. An undeniable, magnetic force that pulls
you in because you cannot turn a blind eye no matter how hard you try. Because
you cannot bear witness to human suffering and not do anything. Because you’ve
been there and you can relate to another’s pain, grief, and sense of
hopelessness and it is unacceptable to not help ease the heaviness of another’s
A diversion into the world of high fashion in this week’s post… It’s an area that everyone who knows me would admit I know nothing about. Nevertheless, here we go…
Martin Schulte, a Partner at Oliver Wyman management consultants, recently posted a fascinating article on, of all things, fashion industry supply chain management. It contains some interesting nuggets for healthcare.
Background: before the 1980’s, couture was customized, reserved for the wealthy, and slow to diffuse into popular culture from biannual fashion shows.
Two disruptive changes shook up the fashion industry in the 1980’s and 1990’s: The first was a move to what is called the “fast-fashion business model” where couture was “translated” from the runways and quickly mass-produced. The second disruption was the emergence of discount realtors like H&M and Topshop, which offered extremely fashion-sensitive clothing (at cut-rate prices) to the masses. These two trends quickly democratized fashion.
I can’t tell you exactly when it happened, but sometime in the past two decades, the practice of medicine was insidiously morphed into the delivery of health care. If you aren’t sure of the difference between the two, then “God’s Hotel” is the book for you. It’s an engaging book that chronicles this fin-de-siecle phenomenon from the perspective of San Francisco’s Laguna Honda Hospital, the last almshouse in the United States.
Dr. Victoria Sweet, a general internist, came to Laguna Honda for a two-month stint more than 20 years ago and ended up staying. Laguna Honda was home to the patients who had nowhere else to go, who were too sick, too poor, too disenfranchised to make it on their own. The vast open wards housed more than a thousand patients, some for years. Laguna Honda was off the grid, and this, Sweet discovered, was to the benefit of the patients.
Unencumbered by HMOs and insurance companies, the doctors and nurses practiced a very old-fashioned type of medicine, “slow medicine,” as Sweet terms it. There was ample time for doctors and nurses to get to know their patients, and ample time for patients to convalesce. Many a written-off patient recovered within the comforting, unhurried arms of Laguna Honda.
Of all the people in the health care system, none is more central than the physician. Fundamental reform that lowers costs, raises quality and improves access to care is almost inconceivable without physicians leading and directing the changes. Yet of all the actors in modern health care, none are more trapped than our nation’s doctors. Let’s consider just a few of the ways your doctor is constrained, unlike any other professional you deal with.
No Telephone. Sometime in the early part of the last century, all the other professionals in our society — lawyers, accountants, architects, engineers, etc. — discovered the telephone. It’s a handy device. Ideal for communicating with clients. Yet even today I find that I can rarely talk to a doctor by phone. Why is that?
The short answer is: Medicare doesn’t pay for telephone consultations. Medicare has a list of about 7,500 tasks it pays physicians to perform. And talking by phone isn’t on the list — at least in a way that makes it practical. Private insurance tends to pay the way Medicare pays. So do most employers.
At a time when doctors feel like they are being squeezed on their fees from every direction by third-party payers, most become very focused on which activities are billable and which are not. And most are going to try to minimize their non-billable time.Continue reading…
You are sick with something-or-other and your doctor writes you a prescription for a medication. She briefly tells you what it’s for and how to take it. You go to the pharmacy, pick up the medication, go home and follow the instructions, right? I mean, how hard could it be?
Pretty hard, it appears. Between 20 percent to 80 percent of us – differing by disease and drug – don’t seem to be able to do it.
There are, of course, many reasons we aren’t. Drugs are sometimes too pricey, so we don’t fill the prescription. Or we buy them and then apply our ingenuity to making them last longer by splitting pills and otherwise experimenting with the dosage.
Some drugs have to be taken at specific times or under specific conditions, posing little challenge when you are taking only one. But it can be devilishly difficult to coordinate the green pill half an hour before breakfast, the yellow ones on an empty stomach four times a day and the orange one with a snack between meals. It’s complicated; we don’t understand. We’re busy; we forget. We’re sick; it’s confusing.
Some drugs produce uncomfortable side effects while others set off an allergic reaction. Every single day, we have to decide if the promised outcomes are worth the discomfort.Continue reading…
Health care leaders are busy talking to attorneys and consultants about how to set up Accountable Care Organizations (ACOs). A recent Advisory Board survey found that 73 per cent of hospital finance executives said that creating such an organization was a top priority for their health system.
Last year my most popular keynote topic was patient-centered medical home creation; this year everyone wants a presentation on ACOs.
However not everyone has jumped on the ACO bandwagon. Bruce Bagley, MD of the American Academy of Family Practice was recently quoted as saying, “There are probably no experts about ACOs. It’s a developing concept.” And Jeff Goldsmith, PhD, of the University of Virginia stated at the same conference: “I think this is a stupid idea. Managed care without the risk – that’s like gin and tonic without the gin. How do you end up making choices if you’re not forced to make them?”
I started thinking about what an ACO would look like if it was truly patient-centered. What if we designed an ACO that gave patients what they say they really want?
Don Berwick wrote an article in Health Affairs in 2009 that examined what patient-centered should mean, and since he became the head of Medicare in 2010 it might make sense to start there. After all, Medicare is pushing the ACO concept by creating pilot projects and encouraging the shift from fee for service payments to global payments for medical care reimbursement.