by John D. Lantos, MD
Pullman and Hodgkinson present a case that, it seems, should have been an easy one. A competent adult makes a simple request to discontinue a medical therapy. Further, it was a therapy that he’d already tried so personal experience informed his preference to discontinue therapy. His request was repeated over time. He was determined to have adequate decisional capacity. So why did both the physicians and the bioethicists consider this to be a difficult case?
There are certain cases that lead to such dilemmas. They are cases in which emotions tug us in one direction and reason tugs in another.…
For all our efforts to preserve and maintain health and quality of life, an equally important but often overlooked conversation surrounds how our lives come to an end. Approximately 30% of Medicare costs are attributed to the 5% of beneficiaries who die each year, with 78% of those costs stemming from life-sustaining acute care during the final thirty days of life. Compounding the considerable financial cost is the emotional cost of difficult choices made during this time, sometimes without full knowledge or awareness of options and likelihoods.
In this figure, the artist visualizes that final year of life, highlighting one of those difficult questions – Where will I die? – at the end of what is sometimes a difficult and painful path, and sometimes, by fortune or by planning, less so.
Across the horizontal axis, each of 2,398 patients who died within a five year span is represented by a single column, the columns grouped by the estimated environment in which the individual died. The columns are composed of a series of points representing interaction with the healthcare system, as identified through clinical and claims records, and colored by the place of service for the event.
The most obvious difference experienced by the patients studied here is the difference in their final month across the different places of death. Most immediately obvious is that those who die at home or hospice – in this analysis, some of those who died at hospice may be assigned to home due to lack of activity – appear to have a tapering of healthcare activity toward the end, whereas those whose end-of-life occurs in the hospital tend to spend their last days and weeks there.
A summary of costs, conditions, and prescriptions for each of these groups follows the figure. Although the artist does not try to answer some important questions about the experiences of the individuals portrayed here, and what they may have wanted their final year to be like, this visual at least offers the viewer a look into these last moments, and perhaps a bit of insight into how and where we would want our final year to be.
You’ve just moved to a new city for a new job, and before you can find a primary care practice, you get sick. So you visit an urgent care center. The doctor examines you, treats you, and urges you in not-so-subtle (and sometimes judgmental) terms to quickly find and follow up with a PCP. And so the search begins.
Step 1: Consult Google. Find 150 doctors within 50 miles. Realize you know nothing about any of the doctors on the list.
Step 2: Ask colleagues for recommendations. Receive great reviews of 2 doctors.
Step 3: Call the recommended doctors. None are taking new patients.
Step 4: Realize you have insurance that limits your options. Scrap your Google search and search on your insurance company’s website for “find available doctors taking new patients.” Results: 3 doctors.
Step 5: Call the doctors listed. Doctor 1 isn’t taking new patients at all. Doctor 2 is taking new patients in 4 months. Doctor 3 may be able to fit you in in two weeks.
Step 6: Give up the search.
Step 7: Symptoms return. Call a PCP office to beg for an earlier visit. They agree to fit you in in 4 days. In the meantime, they suggest visiting an urgent care facility for timely treatment.
It has been widely discussed among bioethicists and health care policy experts that emergency departments are overcrowded, urgent care centers are rapidly becoming a substitute for the traditional primary care doctor, and that the number of new physicians specializing in primary care medicine has been declining in favor of other, higher-paying specialties. (See Dr. Wayne Shelton’s blog) Despite the push for establishing a “medical home” and centralizing care around the primary care physician, demand for urgent care or emergency services is still high.
Lack of access to primary care is often blamed on financial issues, especially lack of insurance, but even well-insured patients are affected by the PCP shortage. A patient may be able to afford the PCP visit, but they either cannot find a practice accepting new patients or, if they are already a patient, may have to wait several days to get a sick visit appointment. For a patient with strep throat or another easily diagnosable and treatable illness, an extra 4-5 days is too long – the patient suffers longer, risks complications or worsened illness, and must take more time off of work, which can have significant consequences.
Faced with this dilemma, why would a patient wait days for their PCP appointment when they could go somewhere else to receive care the same day? Are patients really to blame for their failure to find a medical home? If PCPs only see patients for a well visit 1-2 times per year, do they have a comprehensive picture of a patient’s overall health? Are primary care physicians actually the primary doctors for their patients, or have their offices essentially become a warehouse for patient medical records from other practitioners?
Urgent care centers are rapidly bridging the gap between PCPs and emergency departments, increasing access to care for acute illnesses while avoiding high costs in the ER, but potentially decreasing interactions between patients and PCPs. Because of this, many patients are left wondering, how can they find comprehensive primary care while still being able to be seen quickly for acute illnesses? Is it reasonable to expect PCPs to be able to provide all primary care for patients, sick and healthy, or do we need to reconsider what is needed for a patient’s “medical home?”
In a recently filed amended complaint against the State of California the family alleges:
"26. Ms. Fonseca has knowledge of other patients who had been diagnosed as brain dead, using the same criteria as in her son’s case. In some of those cases, where the decision makers were encouraged to consent to the withdrawal of life support, the patients emerged from legal brain death to where they had cognitive ability and some even fully recovering. Such cases are fully medically documented."
"38. Despite an official determination that Israel Stinson is dead, the child has shown movement in direct response to the voice and touch of his mother."
"39. Since the issuance of the Certificate of Death, three physicians, independent of Kaiser and UC Davis, have given their medical judgment that this child is in fact alive."
"45. As of the filing of this Second Amended Complaint the child is increasingly having more purposeful movements. In addition to the prior movements that he had at Kaiser in April, he now moves his arms, hands, legs and toes. Further, these movements are not random. They occur primarily in response to voices and music. A song that the child knows was played. He begins to move at the sound of the music."
"49. Plaintiff is informed and believes and thereon alleges that the definition of death is fallacious. In essence, the presupposition is that the cessation of all functions of the entire brain – including the brain stem – is per se irreversible. However, Plaintiff is informed and believes and thereon alleges that brain waves return in rare cases after having disappeared. Nonetheless, California law directs that such a person be deemed dead."
Among other relief, the family seeks:
- An order expunging all records archived by Defendant, or persons and entities under her control or authority, which state or imply that Israel Stinson is deceased
- A declaration that the California Uniform Determination of Death Act is unconstitutional on its face
- A declaration that the California Uniform Determination of Death Act is unconstitutional as applied