Who Cares for the Frail Elderly?

A whopping 86 million Americans are family caregivers for an adult with significant health problems, according to a new report. Untrained, unpaid, and unlicensed, they take care of some of the sickest patients in the U.S.

Just under half of these caregivers provide complex medical care: this is a level of care that only doctors or nurses would be allowed to administer if the patient were in a hospital or nursing home. They supervise their family member’s medications, drugs that may have side effects so severe that patients taking them need to be hospitalized. They apply dressings to wounds, a procedure that is sometimes so painful that the patient has to take narcotic pain medicines beforehand. A minority even give intravenous medication or use equipment such as dialysis machines or ventilators that are customarily operated by specially trained professionals.

In the last three years, the percent of Americans serving as caregivers to an adult with health issues has gone from 27% to 36%, presumably related to the growth of the elderly population, the recession (which forced families to take on caregiving responsibilities rather than hiring outsiders), and the rise of chronic illness (fully 75% of older adults have at least one chronic disease such as diabetes or emphysema). The focus of the new survey is how these caregivers get the training they need to do their jobs.

The answer is both unsurprising and disturbing. When caregivers seek help, they rely heavily on a web search.

Caregivers often do consult a health professional—79% of them report they spoke to a clinician about their concerns. But they report wanting and needing much more guidance in carrying out their daily responsibilities. They say they use the internet to learn how to monitor drugs and how to diagnose and treat disease. What they uncover on the web ranges from sophisticated, up-to-date medical information to downright disinformation. Fortunately, a professional agrees with their diagnosis 41% of the time, according to the study. In the majority of cases, a clinician disagrees with the caregiver’s web-based diagnosis (18%) or the caregiver never seeks the advice of a clinician (35%).

It is time to recognize family caregivers as members of the health care team and make sure they get the right kind of training to do their job, just like their professional colleagues. To date, “caregiver support” has largely been psychosocial, intended to ease the stress that comes from taking care of a chronically ill relative an average of 20 hours a week. “Support” for the sophisticated role that caregivers often play, a role that is the key to optimizing medical treatment and minimizing hospitalizations, will require new resources. We need to be creative about designing these materials, recognizing that 60% of all caregivers have another job, usually full time. We will need to design videos and massive on-line courses (MOOCs) as well as how-to guides. The physicians who care for the frailest and sickest patients should take the lead: it’s what their patients need.

Last Chapter or Final Gasp?

An update from the Dartmouth Atlas last week reports that we are making excellent progress in how we care for people at the very end of life. Medicare enrollees spent fewer days in the hospital and more days enrolled in hospice in 2010 than they had a mere three years earlier. Perhaps even more impressive than the overall 9.5% decrease in the number of hospital days per patient or the 13.2% increase in the proportion enrolled in hospice at the time of death is the change in selected institutions. As the Dartmouth Atlas data so often reveal, change is not evenly distributed across all regions or all hospitals. Some academic medical centers, such as NYU's Langone Medical Center, demonstrated a whopping 29.9% decrease in the average number of days spent in the hospital during the last six months of life, from 26.9 days to 19.1 days. At the same time, other centers such the University of California, Irvine, reported an almost exactly equivalent increase in the average number of days spent in the hospital. But buried in the report is some less encouraging news, which the authors mention without comment: in the last two years of life, Medicare spent an average of 15.2% more in 2010 than it had in 2007 (an increase from $60,654 to $69,947).

How can we be doing less of what costs most--hospital care in general and ICU care in particular--and be spending more, not less? Either costs for everything are going up or we are spending proportionately more during what will turn out to be the first 18 months of the last 2 years of life. Sadly, both are probably true. A recent Time Magazine special report brings home the point that some economists have been making for years--it's the prices that make American health care so expensive. We pay more for tests, for hospital care, for physician visits, for medications, and for just about every other component of health care, than our counterparts anywhere else in the developed world. But the other all too probable reality is that though we finally recognize that most patients do not want burdensome, invasive treatment when they are dying, we are if anything more aggressive in our treatment of those in the last chapter of life but not in its final gasp.

It is time to extend the discussion about how best to care for patients near the end of life from those whose deaths are imminent to this larger group who may have months or even a few years to live. These patients are often over 85 years of age and typically have multiple chronic conditions such as heart disease, lung disease, and diabetes or a serious, advanced illness such as cancer or dementia or Parkinson's disease. Predicting how much time they have left may be difficult but projecting what they are likely to experience in their remaining time--progressive decline, increasing dependence, lower quality of life--is not. These are patients who are not eligible for hospice care and in most instances want more medical treatment than is typically available through hospice. But when they understand their general health condition, they often say they prefer care that emphasizes quality rather than quantity of life. It is our challenge to find ways to deliver that kind of care, substituting labor-intensive for technologically-intensive treatment and home care for hospital care. Only when we shift our gaze to life's last chapter will we both improve the quality of care for the sickest, most vulnerable elders and at the same time lower costs.

Culture Change in the Nursing Home: Boon or Boondoggle?

An exciting movement known as "culture change" is sweeping through nursing homes. It seeks to transform nursing homes into homey environments that focus on what residents want, not what's best for the institution and its staff. They are supposed to let residents decide what they want to do--when they want to get up, when to have meals, what they'd like to eat, and how they spend their days. To this end, staff are empowered (they are supposed to get to know the residents for whom they provide care so they can figure out how best to help them) and cross-trained (all staff members perform all tasks, like a family rather than an institution). A recent study found that fully 85% of directors of nursing in a large sample of nursing homes say that their facilities have incorporated at least some features of culture change, compared to 56% in a study done by the Commonwealth Fund in 2008. But does culture change succeed in improving quality of life?

My father lives in a nursing home that is supposed to fully embody culture change. The facility is beautiful. Almost every resident has a private room. The building is carved up into "households" of only 14-15 residents. Life in the household is organized around a bright "country kitchen," similar to what many people experienced in their own homes. But as a home that is supposed to enhance well-being, it is unequivocally a failure.

My dad is 89 years old and has moderate dementia and Parkinson's. Like most of the people in his household, he needs help with the most basic activities--going to the bathroom, getting dressed, bathing, and walking. He cannot initiate activities. He expresses no interest in the various events that take place in the building such as concerts or discussion groups, so unless a visitor takes him, he does not attend. He used to spend most of his time in his room, looking at the New York Times or watching television; because he sometimes got up without calling for help and often fell, he is now required to spend all day sitting at the dining room table where the staff can keep an eye on him. He has nothing to do other than watch a large screen TV that is on continuously and study the daily "schedule of events" (none of which he attends) that is distributed to each resident.

As a group, the nursing assistants at this nursing home are kind and gentle and provide adequate personal care--though they often neglect to put in my father's hearing aid, forget to shave him, do not take him to the bathroom with sufficient regularity to avoid accidents, and leave him wearing soiled clothes. They do not try to engage him in conversation or come up with suggestions for how he might spend his time.

My father lives in an extremely high end facility that was designed from its inception to implement resident-centered care. Perhaps the facility succeeds with the small minority of residents who have no cognitive impairment. Perhaps the facility succeeds with residents who are mobile. The idea behind culture change is inspiring. But either it doesn't work or its implementation is tremendously flawed. In either case, it's time for high quality research to monitor the outcomes of culture change and to figure out what needs to be done to make the dream a reality.

The Truth About Prognosis

We've known for years that cancer patients think their life expectancy is considerably greater than it really is--and that their oncologists think it is. This kind of wishful thinking has serious consequences: patients who believe they have years to live are likely to want their doctors to do everything possible to prolong their lives, even if the treatment is painful and risky. Patients who believe their time is very limited tend to want their doctors to provide treatment geared to promoting quality of life. This past week, a new study published in JAMA Internal Medicine by Melissa Wachterman and colleagues reports a similar gap between dialysis patients and their nephrologists.

A small group of dialysis patients (half of whom were over age 70) were interviewed along with their kidney doctors. The patients were significantly more likely than the doctors to believe they would be alive in one year or in five years, and were almost twice as likely as their doctors to think they were candidates for a kidney transplant. As with cancer patients, the majority of kidney failure patients who were pretty sure they would be alive in a year wanted medical treatment focused on extending life (though just under half did not) but fewer than ten percent of those patients who were not so sure they would live a year wanted a focus on life prolongation.

This study confirms how important it is for patients to understand the nature of their illness. All too often, physicians try to determine their patients' goals of care and corresponding treatment preferences without first making sure patients know their prognosis. But people rarely have fixed views about what is best for them--whether living longer or being comfortable or remaining independent is paramount depends on their situation. Physicians need to be clear with their patients about what they can expect and patients should push their doctors to tell them.

What is not addressed in the Wachterman study--and what may be even more important for patients to grasp if they are to make informed decisions about treatment--is the overall trajectory of their illness, not just prognosis in the narrow sense of survival time. Patients need to know in general terms what they are likely to experience in the coming weeks, months, or years: will they be able to stay at home or will they need extensive personal assistance, perhaps living in a nursing home? Will they need to spend a lot of time in the hospital? Are they likely to experience frequent relapses followed by improvement or should they anticipate a slow downward slide? Planning for future care is tremendously important for every person with a serious illness. And gaining a good understanding of one's general medical condition is the crucial first step in advance care planning.

Back in Business

After a one-year hiatus, I am returning to blogging. "Perspectives on Aging" has been reborn as "Life in the End Zone." It is intended for anyone interested in issues arising in life's final stage: people with advanced illness or old age, their friends and family members, policy-makers, and clinicians. I plan to publish one short post each week, typically a response to an article in the medical literature or a report in the media. In honor of the blog's rebirth, and thanks to Google and the wonders of technology, the blog has a new look. Please send me feedback about both the appearance and the content of "Life in the End Zone."