At Long Last: End of Life Care for Dementia Patients

Advances in medical technology have resulted in substantial gains in life expectancy, especially in developed nations (Roser 2016). However, the healthcare system in the United States is not effectively prepared to handle the massive influx of patients with age related cognitive deterioration and their goals to live comfortably at home and be free of pain. Not only does the current healthcare system stress quantity rather than quality of care, but it also is heavily biased towards acute medical intervention and short term increase in life instead of comforting patients and relieving their pain (Meier 2015). Doctors and hospitals are incentivized to provide more treatment, even if it is less beneficial to patients. However, patients with terminal illnesses do not want aggressive treatment to prolong life, but rather to enjoy their remaining time in comfort (Delude 2015). These issues become more evident in the context of dementia and its underlying diseases, such as Alzheimer’s, which are currently incurable despite the considerable improvements in medical technology and treatment.

Alzheimer’s disease, a progressive neurological disorder that afflicts about five million Americans today, affects the entire body (Mitchell et al. 2012), leaving patients incapacitated and bedridden. Patients gradually lose track of where they are, what is happening, how to dress themselves, who their family is, finally becoming immobile, incontinent, incoherent, and catatonic. As a result, an Alzheimer’s diagnosis is extremely emotionally distressing because it constitutes a loss of identity and of personhood. However, the long trajectory of cognitive decline means that many patients who are diagnosed with Alzheimer’s disease will likely continue to survive for many years, and sometimes even decades (Delude 2015).

When asked, three out of four people say they would prefer to die at home, receiving comfort care only and with no intrusive interventions. Yet most people fail to discuss end-of-life wishes with their families, and only one in four actually prepares advance directives. So when the end nears, most families don’t know what their loved ones would want. Meanwhile, doctors are trained to defeat death, not allow it to happen. In addition, the current payment system creates perverse incentives for sending dying patients to hospitals, where the default mode is acute care. As a result, many people receive unwanted and expensive end-of-life treatments that exacerbate, rather than alleviate, pain and suffering (Delude 2015).

The purpose of the healthcare system should be to best use medical technology to help patients with dementia achieve their goals of comfortable, at home care that provides relief from pain. End of life care is supposed to be supportive and less intrusive in nature. Though dementia is terminal illness, the process of eventual death takes an exceedingly long time. Consequently, patients are more likely to pass away due to the clinical complications from interventional care and being bedridden rather than from the disease itself. In contrast, hospice is a more effective form of treatment because it provides a refuge from unwanted end of life interventions. In hospice care, patients forgo curative treatments but receive care focused on comfort, managing symptoms, relieving pain, emotional support, and enhancing the quality of the time they have left (Delude 2015).

Though hospice seems ideally suited to providing the type of care that advanced Alzheimer’s patients need, it can be a challenge to be admitted. A physician must certify that death will come within six months, a requirement that stems from the early days of hospice when it was primarily designed for cancer patients. However, it is significantly more difficult to predict with reasonable accuracy when a patient with dementia will likely die than it is for a patient with cancer, a disease that has a relatively well understood trajectory towards death. “Alzheimer’s prognosis is so variable that most people who need hospice care won’t get it because it’s not clear they are dying until the last week of life,” says Diane Meier, a geriatrician at Mount Sinai Hospital in New York City. In addition, patients are also required to show ongoing decline in order to continue to receive hospice care. Patients who live longer than six months must reapply; those who stabilize and stop getting worse are no longer eligible for hospice. Ironically, hospice patients often do improve, because palliative care alleviates medical problems caused by the side effects of intrusive medical interventions. By providing loving and meticulous care, patients lives are extended and, in a cruel paradox, their eligibility for hospice is jeopardized (Meier 2015).

The hospice Medicare benefit was set up in 1980s for terminally ill patients. As a result, Medicare considers hospice only as a short term solution and has implemented a cumulative benefit cap per patient. The inherent problem with financing hospice care for dementia patients specifically is that their “end of life” care often lasts far longer than the six month period that Medicare will reimburse. The majority of expenses are taken up only in the beginning of care, when the patient is first admitted, and at the end, when the patient is dying. In between, however, daily expenses are typically lower. Despite the expense curve, hospice benefits are paid out at a constant rate, which eats into the benefit cap. Consequently, hospices must discharge long term patients once the benefit cap is reached. This ineffective administration of funds severely limits the care that patients wish to receive. Many patients who outlive their prognoses and would have benefited from continued palliative care provided by hospice services are forced to resort to invasive hospitalizations and aggressive medical treatments as families struggle to pay for or provide comfortable, at home care consistent with the goals of patients (Meier 2015).

Unfortunately, the current healthcare system does not offer a clear way to continue to care for patients who have been discharged from hospice (Delude 2015). In order to make palliative care more accessible to the ballooning aging population, the hospice Medicare benefits program must be revised such that benefits payments are not paid at a constant rate. Rather, benefits should be reduced during the period when the patient is in stable condition and hospice expenses are lower. This allows patients to remain longer in hospice care and in the comfort of their own homes.

As clinicians become more reliant on the technical aspects of care, less attention is given on supporting patient and their families. Adjusting doctor training protocols and reimagining the home as a place of medical treatment are key aspects in changing the healthcare system for the better. It is imperative that doctors in medical school be trained to take the time necessary to explore the goals and values of patients and best utilize their expertise and medical technology to help patients achieve their goals. The medical system is primarily built around hospitals and clinics and the payment system mirrors that. Though a growing number of hospitals now provide palliative-only care to dementia patients, most who need that care are not actually in hospitals, but rather in their own homes, nursing homes, and retirement communities (Meier 2015). Because reimbursements are predominantly given to hospitals and clinics, most doctors do not have any financial incentives to provide at home care. Reaching these patients will require new federal policies that include the home as an effective location of health care and reward doctors for meeting patient needs where needed (Delude 2015).

References

Advanced Dementia: State of the Art and Priorities for the Next Decade,” by Susan L. Mitchell et al., Annals of Internal Medicine, January 3, 2012.

A National Study of Live Discharges from Hospice,” by Joan M. Teno et al., Journal of Palliative Medicine, August 7, 2014.

Fixing Medicare’s Hospice Problem,” by Cathryn Delude, Proto Magazine, January 28, 2015.

Long Last Moments,” by Cathryn Delude, Proto Magazine, January 28, 2015.

Troubled Passage,” by Diane Meier, Proto Magazine, February 15, 2015.

Alzheimer’s Disease and Dementia Are Different,” by Angela Lunde, Mayo Clinic Expert Blogs, September 27, 2007.

Alzheimer’s and Dementia,” no author listed, Alzheimer’s Association, nd.

What is the Difference Between Alzheimer’s and Dementia?,” no author listed, Alzheimers.net, nd.

Medicare Hospice Benefits,” no author listed, Medicare.gov, nd.

Life Expectancy,” by Max Roser, Our World in Data, 2016.

Important Terms and Definitions:

  • Dementia: a chronic or persistent disorder of the mental processes caused by brain disease or injury and marked by memory disorders, personality changes, and impaired reasoning.
  • Alzheimer’s Disease: a progressive mental deterioration that can occur in middle or old age, due to generalized degeneration of the brain.
  • Palliative Care: care designed to relieve pain or alleviate a problem without dealing with the underlying cause so patients remain in comfort.
  • Hospice: a home providing palliative care for the sick, especially the terminally ill.
  • Medicare: the federal health insurance program for individuals who are 65 years or older.