February 05, 2020

Let's Hear It for Caregivers!

            As a geriatric and palliative care physician, I have provided medical care to many patients in their homes. They are typically very sick: some of them are frail, some suffer from dementia, a number are approaching the end of life. They have spent time in doctors’ offices and x-ray suites and in emergency rooms, they have been hospitalized, and they have had more than their share of operations and procedures. Most of them are at a point in their lives where want to stay at home for treatment. But because of their own physical or mental limitations, they cannot participate extensively in their own medical care. They do not have the mobility to get to a pharmacy to fill prescriptions, they do not see well enough to draw up their own insulin in a syringe, and they do not have the dexterity to change the bandage on a skin ulcer. They depend on a family member or, in some cases, a hired aide, to help them. It is for these patients and the family members who take care of them that I decided to write a book. It would be directed principally at caregivers, at the unpaid, unsung, and unsupported millions who are the backbone of care for frail older people.
            I have met many of my patients’ family caregivers. They are caring, conscientious people who want to do the right thing for their mother or father, sibling or spouse. But they aren’t comfortable administering intravenous medications or giving injections because they worry they might make a mistake, with potentially serious consequences. They want the best medical care for their relative, and if that means bringing them to the hospital every time their shortness of breath gets worse or they have chest pain, that’s what they will do, even if their family member pleads with them to let them stay home. Caregivers would feel guilty if they did anything else because they don’t feel knowledgeable enough to adjust medication doses or oxygen flow rates on their own or to suggest such a course of action to the physician. They haven’t gotten the training necessary to troubleshoot when the medical equipment they are expected to use misbehaves. As a result, many of the oldest and frailest patients are repeatedly hospitalized. The hospitalization commonly leaves them weaker, more confused and more debilitated than they were before admission. Some of them spend months going first to the hospital, then to rehab, then back to the hospital, only to die, perhaps before ever returning to the comforts of home. Not the path that they wanted.
            I discovered that by working closely with family caregivers, by providing them with the knowledge and support they need, this cycle can be interrupted. It’s a multi-step process that begins with a review of the patient’s overall medical condition. It turns out that often either the patient, the caregiver, or both have serious misconceptions about the nature of the patient’s illnesses, how they will evolve over time, and how they are likely to affect the patient’s well-being. Then we talk about what is most important to the patient. Is it to live as long as possible, no matter what the cost in pain, suffering, or institutionalization? Is it to remain as comfortable as possible? Or is it to stay at home and remain independent? Usually, patients want to live as long as possible and be comfortable and be independent at home. The reality is that life is full of trade-offs, and medical care for frail adults is no exception. Based on a realistic understanding of the patient’s general health and a frank conversation about the goals of medical care, we can develop strategies for addressing the medical problems the patient is most likely to develop. If she has chronic lung disease, for example, we can be fairly certain she will periodically develop worsening shortness of breath. When that happens, should the caregiver bring her relative to the office? To the emergency room? Or could she try modifying the amount of oxygen her family member is getting, perhaps supplemented by antibiotics, consulting with a member of the medical team by phone?
            Key to the success of this approach is the relationship between patient, caregiver, and physician. Critical as well is the willingness of the physician to partner with patients and their caregivers. But its effectiveness also depends on the caregiver having basic knowledge about the patient’s medical condition and strategies for addressing problems as they arise.  I believed that a book that guides families along the way could help overcome some of the obstacles to patients getting the kind of care they want as they age. And so, what would become The Caregiver’s Encyclopedia: A Compassionate Guide to Caring for Older Adults was conceived.

            I started the book by discussing how to navigate through medical institutions such as the hospital, the physician’s office, and the rehab facility. Then I decided to add a section about the most common chronic conditions such as heart failure, high cholesterol, and high blood pressure. Next, I added a section on management of acute symptoms: since patients typically say “I’m short of breath” and not “I’m having an exacerbation of congestive heart failure,” I organized this part by symptom. Then I realized I could demonstrate how the caregiver’s response to an acute medical symptom such as nausea or dizziness might vary depending on the goals of care, so I modified the chapters accordingly. The result is a comprehensive guide to medical care for frail older people. I hope that families will view it as a companion to take with them as they proceed along the caregiving journey. It can be a difficult journey, but it can also be rewarding and enjoyable.  Caregivers just need the right tools and a friendly guide to assist them.

January 19, 2020

Where Have All the Doctors Gone?

The New York Times began the new year with a spate of bad news, including a column with the imploring title “Older People Need Geriatricians” and the despairing subtitle, “Where Will They Come From?” The author, Paula Span, who has for years written insightful and informative articles about aging, made a number of valid points about the shortage of geriatricians: projections are that the US will need over 33,000 geriatricians in just five years, but there are only about 7000 in practice today; and one-third of training slots in geriatric fellowship programs went unfilled last year. 

What struck me about the article is that I recall the NY Times running a very similar piece a few years ago. A quick search revealed that indeed, exactly 4 years ago, the Times had a piece called “As the Population Ages, Where Are the Geriatricians?” This essay pointed out that geriatricians are just about the lowest paying subspecialists in the US, earning less than half of what a cardiologist typically makes. They even make significantly less than a general internist—though geriatricians have more training.

The Times is not the only major newspaper to bring the issue to public attention. As far back as 2013, the Wall Street Journal had a column “Desperately Needed: More Geriatricians.” A year later the same paper ran another piece with the same theme but a possible fix. Entitled “A Remedy for the Looming Geriatrician Shortage,” it reported on a consortium involving four medical schools, Icahn, Johns Hopkins, Duke, and UCLA, that focuses on training medical school teachers. Instead of aspiring to develop full-fledged geriatricians, they offer 3-5 day, intensive training modules to medical school faculty members to enable them to transmit expertise in falls, dementia, incontinence, delirium, and other geriatric topics to their students. Funded by the Reynolds Foundation, the program had managed to train 430 physicians over the course of 10 years. The “Program for Advancing Geriatrics Education” (PAGE) ended in 2017.

The real problem, as implicitly acknowledged by PAGE, is not so much the shortage of geriatricians as the lack of geriatric medical expertise. So why has it been so difficult to remedy the situation—the gap between supply and demand has been growing, not shrinking? And what are we going to do about it?

Several explanations have been advanced, each with a corresponding solution. Since compensation for geriatricians is comparatively poor, economists argue, just improve salaries. This means modifying the Medicare fee schedule since the patients under discussion are almost all on Medicare. Since it’s going to be very hard to increase the size of the total pie, giving a larger share to physicians who see geriatric patients will mean giving a smaller share to cardiologists and orthopedists. That won’t go over well with the cardiologists and the orthopedists, not to mention the gastroenterologists, ophthalmologists and other procedure-oriented specialists, who are all well-paid under the current system. Pervasive ageism is another probable cause. More physicians are likely to want to care for older patients if the society as a whole values older people. Society doesn’t and physicians, who are after all members of society, tend not to either. In fact, the reason that so many of the young physicians who accept geriatric fellowship residency slots are from other countries is that ageism is perhaps not so endemic in the developing world. Changing attitudes is going to be even more difficult than modifying the Medicare fee schedule. 

In light of the obstacles faced by each of the proposed solutions, we need to turn to a quintessentially geriatric way of looking at the world: instead of seeking a magic bullet, instead of expecting that there is one root problem and therefore just one problem that needs fixing, we should accept that the problem is multifactorial. Poor reimbursement, ageism, the absence of procedures, insufficient role models all contribute to the shortage of geriatricians and the lack of geriatric expertise among generalist physicians (both internists and surgeons). The fix will likewise have to be multifactorial. Build on pioneering strategies that involve co-management by a geriatrician and an orthopedist for hip fracture patients. Develop screening tools for frailty and refer the frailest of the frail to geriatricians. Maybe we can’t make a great deal of headway in any of these arenas, but perhaps we can improve things a little bit in each of them. And that would be a good start.