Category Archives: Advance Care Planning

Dazed & Confused at the Warehouse

The Costco in our area recently shuttered its long-standing warehouse store and opened a brand-new, bright and shiny and much larger one a few miles away. Eager to see what the new store had to offer (and lured by the prospect of a free roasted chicken), my husband and I made our first visit.

Once inside, it was simply…overwhelming. First, the sheer enormity of the place. It’s hard to visualize what 148,000 square feet of space actually looks like, until you’ve actually sprinted from one end of the store to another (in this case, to pick up an item I’d forgotten, while my husband waited in line with our cart.) There were yet more endless aisles than there had been in the old store, with unreachable goods stacked up to the ceiling. I barely knew where to find anything in the old store, but the new one was even more of a mystery. There was no way to figure out the logic (or lack of it) behind what products were located where. There was no one to guide us; what staff members we saw were absorbed in their own tasks.

So, in short, I felt lost, confused, intimidated, turned off and discouraged.

And it made me think: maybe this is a medical metaphor. Maybe this must be how too many patients and caregivers feel when they’re suddenly thrust into the health care system to deal with serious illness or a medical crisis. The hospital setting alone can be jarring and intimidating. In a crisis, patients (or their caregivers, if patients aren’t in a position to speak for themselves), must make decisions about treatment and care fairly quickly.

Much has been written about how shared health care decision-making (by patient and physician) has come to replace the old paternalistic model in which physicians mostly made decisions for you. But the fact is, particularly in a crisis, there is not an even playing field between you and your medical team. The team has the advantage of having far more knowledge and experience with your condition than you, and unless the team includes gifted communicators, that puts you at a disadvantage.

So what can you do to avoid becoming dazed, confused and fearful about making harmful choices in a medical setting? A little preparation, while you’re in good health, can help. Here are just two of many useful sources:

Recognizing that patients need better information about what care they truly need, Consumer Reports and the American Board of Internal Medicine (ABIM) Foundation have developed the Choosing Wisely® website (http://www.choosingwisely.org/patient-resources/) which aims help consumers choose care that is supported by evidence; doesn’t duplicate tests or procedures already received; and is truly necessary. More useful information is available at http://www.consumerhealthchoices.org, including advice for caregivers and treatments and tests for elders.

One of the best things you can do is to have an advance directive that spells out the kind of care you’d want if you couldn’t speak for yourself. Caring Connections is a program of the National Hospice and Palliative Care Organization (NHPCO). You can find advance directive forms for each state on its web site: http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289. Caring Connections makes its forms available free of charge.

I haven’t yet found a road map for our local Costco. Fortunately, though, there are many to be found, pre-crisis, in health care.

Overlooked for 2015 Top Medical News

LastcomfortspaperWhat was the top medical news story in 2015? In November, Medscape (a medical website from WebMD) asked just that of its readers — primary care physicians, specialists and other health professionals – and more than 400 replied. Number one was: a major change in diagnostic codes, known as ICD-10. Not surprising, perhaps, as there are many more new codes for physicians to ponder, and probably much more administrative time required, as a result, to the chagrin of small practice owners. (http://www.medscape.com/viewarticle/855309)

If we’re talking about developments that have the potential to make a big difference for patients in the coming years, though, I’d like to suggest at least two that ought to top the list.

My first “top news” story affects advance care planning. At long last, as of January 2016, you and your doctor will be able to discuss your goals, beliefs, values and fears should you become seriously ill – and Medicare will actually reimburse him or her for doing it. Granted, the reimbursement isn’t huge — $86 for a mere 30-minute discussion and $75 for a follow-up – but maybe it will be enough of an incentive to encourage more physicians to engage in these critical conversations.

These are difficult discussions to engage in, whether you’re talking with family and friends or your physicians. And too many physicians’ communication skills leave something to be desired. But the goal is to make sure that if you become very ill – particularly if you are not able to speak for yourself – your care will reflect your wishes and values.

My second “top news” story was the selection of hospices that will participate in the Medicare Care Choices pilot project, with implementation beginning in January 2016.

The Care Choices pilot will allow certain hospice patients with advanced cancers, chronic obstructive pulmonary disease (COPD), congestive heart failure, or HIV/AIDS to elect hospice care without having to give up curative treatments.

             Originally, the Centers for Medicare and Medicaid Services (CMS) was going to pick at least 30 rural and urban Medicare-certified and enrolled hospices to participate. It expected to enroll 30,000 beneficiaries over a three-year period. But because there was so much interest in the pilot, CMS expanded it to more than 140 Medicare-certified hospices and extended the duration of the project from three to five years. It expects to enroll as many as 150,000 eligible Medicare beneficiaries.

Why is this important? Because the idea of forgoing treatment aimed at cure – currently a requirement to enter into hospice care – has discouraged too many patients and their physicians from considering comfort care solely. Ideally, when the pilot is done, there will be useful evidence about whether concurrent care (curative and comfort) improves quality of life and results in fewer hospital readmissions and, possibly, lower Medicare costs.

In my “wishful thinking” category: Maybe in 2016 CMS will announce it is eliminating the six-month prognosis requirement for patients to enroll in hospice care. That would certainly get my vote for top medical news story next year!