By Sarab Sodhi
I walked up to a patient in the Emergency Department, a woman in her 90s who had fallen. She had a decent-size laceration on her forehead and was quite upset. Unable to tell me what had happened, or how she fell, I had to rely on the EMS history. Luckily, the EMTs were still there and could tell me that she had a history of dementia, had fallen at home (where she lived alone) and had been unable to get up for a couple of hours. A neighbor walking by had heard her cries and called 911.
That history alone had me concerned, so she received the typical Emergency Department workup—a CT scan of her head and lab work, including testing for rhabdomyolysis, among other potential problems. All her test results where normal. She was a lovely lady, with children who lived out of state, as our social worker had discovered. She had been living alone for about four years since her husband died, had slowly developed worsening dementia and didn’t often see her doctor. I repaired her laceration and, as I finished, she grasped my hand and wouldn’t let go. She was terrified of the hospital, and wanted to go home.
I wanted her to go home, too. I reached out to her family and asked their opinion, but no one lived nearby who could take care of her other than her neighbors, who also were elderly and infirm. With a heavy heart, I admitted her to the hospital against her wishes, but with her family’s approval.
Realities of Patients with Dementia in the Hospital
The downsides of admitting her were apparent: sundowning, worsening of her mental status, increased aggression due to being in the hospital and hospital-acquired infections. These all were situations about which I had received late night calls as I covered the wards. My philosophical opposition to admitting someone into the hospital for care they possibly didn’t want was trumped by scared family members who didn’t understand the course of her disease.
Patients get admitted against their will, without the ability to choose, as they are “altered” and have “lost capacity.” They stay in a hospital bed, are prescribed all kinds of meds, hate being there (and often die from illnesses caused by medical examination or treatment)—all for care they didn’t want that likely wouldn’t have improved their health or living situation.
Caring for patients with dementia is expensive. Medicare and Medicaid estimate they spend $236 billion on such care, which is about 20 percent of their expenses, according to the Alzheimer’s Association. Patients with dementia incur higher costs, in some cases 3.3 times higher than their counterparts, with hospitalizations accounting for more than half of these costs. Finally, the risk of being hospitalized is 3.68 times higher for a patient with dementia than for one without, according to Bynum et al. in an article in the Journal of the American Geriatrics Society.
But I couldn’t send this woman home and risk the possibility that she’d fall again, perhaps developing an intracranial hemorrhage or a hip fracture that would hasten her demise—especially considering she didn’t have anywhere to go, and exhibited a poor mental status.
Often, though, I question my decision. I do so particularly after I read Dr. Atul Gawande’s book, Being Mortal. Never before had I imagined why nursing homes came into existence, and how they had evolved over time. And I question my decision as I think about my aging grandparents, and their dislike of hospitals and doctors, as well as of senior living facilities. I realized that they (like most of Gawande’s interviewees) simply wanted to continue to live their lives, on their own terms, in their own homes. That, however, becomes very challenging to arrange for the moderate to severely demented patient.
What Are Options Beyond Hospitalization?
So what, then, to do? In an ideal world, a loving series of family members with large enough incomes to accommodate homecare or time off would move in with the patient and care for them around the clock. An absurd idea in the present day United States, it is a reality in much of the developing world, as larger families live together and can share caregiving responsibilities.
If caregivers are not available, then the other stark, extreme choice is the regimented, industrial and depersonalized nursing home. Nursing home care is expensive, estimated at $80,000 to $90,000 per year, according to the Alzheimer’s Association (alz.org/facts). Even caring for patients with dementia at home is expensive, with the average home health aide costing $20 an hour, bringing the cost for a 12-hour-a-day, part-time person to $87,000 per year. Families caring for patients with dementia are 28 percent more likely to cut back on their own food to pay for care. Despite this, 70 percent of people with dementia live at home, cared for by family and friends, and 18 percent live alone, according to Black et al. in the Journal of the American Geriatrics Society.
My practice pattern is as follows: I consult a POLST form or living will if easily accessible, though most often in the Emergency Department these are hard to come by. I call the family when phone numbers are available, and ask about family members’ and the patient’s wishes. Often, many will come to stay with the patient until a long-term solution is found. Finally, when the above options fail, and knowing that many of these patients will require long-term placement, I admit them to the hospital.
I followed up on my patient a few weeks later. Initially she had been doing well in the hospital, had one episode of sundowning during which she attempted to attack a nurse, and then developed an aspiration pneumonia, which required intubation and ICU admission. Subsequently, she was taken off life support and died. Would her life have played out differently at home? I’ll never know.
No Easy Answers, but Conversations a Start
There are no easy answers to this incredibly difficult problem. Patients with moderate to severe dementia are sent back and forth from the nursing home to the hospital all the time. Families attempting to care for their loved ones often have been trying for months to keep a life together for them, until a fall or pneumonia sends them into the hospital and becomes the proverbial straw that breaks the camel’s back.
The challenge remains that culturally, as Americans, we seem to consider dying a failure, according to healthcare blogger and consultant Ian Morrison, and consequently are less open to end-of-life conversations. As physicians and healthcare providers, we have little formal training in end-of-life and goal-of-care conversations—dialogue which arguably is one of our most important functions. And until recently, insurance didn’t reimburse primary care providers for that activity. Ultimately, at present, we have no guidance for when a patient with dementia needs medical care.
The best any of us can do is attempt to do our all for the patient in front of us, trying to maintain their standard of life as we agitate for changes, advocating for more early goals-of-care discussions and calling for reimbursing primary care doctors to have such conversations. And we can call for adding in more conversations about the challenges of dementia and aging, in an effort to move toward a nursing home that gives its inhabitants autonomy over their own lives, trying to improve the national “non-plan” that currently exists for aging.
Sarab Sodhi, M.D., is an emergency medicine resident at Cooper University Healthcare in Camden, N.J.
Editor’s Note: This article appears in the September/October 2016 issue of Aging Today, ASA’s bi-monthly newspaper covering issues in aging research, practice and policy. ASA members receive Aging Today as a member benefit; non-members may purchase subscriptions at our online store or Join ASA.
I found the article extremely interesting and lacking the resources that are indeed needed.
Once again the silos of health care continue to work against the patient . If hospitals could rely on outside professionals such as private case managers families sand patients could get unbiased health care information that promotes health care advocacy .
An aspect of care coordination that hospitals lack is the use of s private RN case manager. Often Private case managers are the systems piece that offers not only the ability to engage in meaningful conversations among
family members but take into consideration the patients preferences , troubleshoot family dynamics, and find ways to collaborate the plan of care.
It is challenging for hospitals to contract out or able to refer to such entities to families and patients but families would gain more and hospitals would use less acute care if we could find a way to merge the two.
Most families I work with often say after the fact, I wish I knew there was such a thing when my relative was hospitalized.
Private case managers who are RN's especially know the system and we are here to help not create more silos but to work towards what our professions stand for , dignity with compassion for our clients.
tina Cheplick RNCCM
Care Solutions for Elders
San Anselmo Ca