Patient Advocate: An Important Role for All Caregivers

November, 2008

The job of caregiver, though usually unpaid, is one of the most complex and challenging roles anyone will undertake. There is no how-to manual that can adequately coach people on what it takes to keep a loved one safe and well once he or she has serious medical problems.

Whether you have a loved one living with you full-time or you manage his/her care from 3,000 miles away, chances are you will be called at some point to act as that person’s advocate. So, along with the responsibilities that many of the more than 35 million caregivers in this country face on a daily basis, such as feeding, cooking, bathing or overseeing hired help, you will also need to be a voice for that person if he/she isn’t able to ask crucial questions or find important information.

Physically or mentally impaired older people need advocacy in many areas. Some examples include dealing with housing or transportation offices, the Social Security Administration, and sorting through Medicare and Medicaid. Many seniors are entitled to benefits they are unaware of and need someone to help them find information on vital programs. Some elders are eligible for reduced or frozen rent rates, reduction of transportation costs and/or specialized transportation to help them remain independent. Find your local area agencies on aging at www.eldercare.gov for more information on what your loved one may qualify for.

Perhaps the most important area for advocacy is the health care system. From prescribed medications to medical testing and hospitalizations, studies show that older Americans must be proactive in understanding the health care they receive to protect themselves from errors and injuries. Those who can’t do so need someone to speak up on their behalf.

Older people need a good advocate within the health care system. There is no doubt that being hospitalized puts older patients at risk for a whole host of problems, including infections, falls, confusion, weakness and bedsores. In addition, a 2006 report by the Institute of Medicine revealed that hospitalized Medicare patients experienced an estimated 400,000 preventable injuries each year from adverse drug reactions. Another 800,000 adverse events were found in nursing homes, plus 530,000 more in outpatient settings.

One of the major recommendations that came from this study was that “patients and their surrogates should in turn take a more active role in the process . . . to keep careful records of all medications.” Patients and caregivers can cut down on the likelihood of injury by creating a simple medical record that is brought to all doctor’s appointments and hospital admissions.

In addition to harm done by medications, what about all of the interventions that are offered to older patients or those with serious illness? We’ve all heard stories about someone who has had the wrong leg amputated or the wrong kidney removed, and are horrified that such things can still happen despite the high level of care available in this country. These are obvious cases in which people received the wrong care—care that only does them harm. In addition, another study showed a 13 percent increase in the number of procedures done on Medicare patients during their final hospital admission that did not result in a corresponding increase in life expectancy. We have more technology to use at the end of life, but it isn’t always the right choice.

Because of this, it is critical that older persons and those with chronic serious illness (and their advocates) become well informed when treatments and procedures are being offered. Some important questions to ask are:

  • What will be the added benefit of this?
  • What are the possible side effects?
  • Will it affect my ability to function independently?
  • What are the possibilities if I choose not to do this?

Another important step to take is creating advance directives–a living will or health care proxy, depending on which state you live in. Discussing these important issues with your loved one will be immensely helpful should the day come that you must make health care decisions on someone else’s behalf.

Sometimes making big medical decisions can seem overwhelming. One place to turn for support if you are grappling with various treatment choices is your hospital’s palliative care team. This interdisciplinary form of care, now a recognized medical subspecialty for physicians, is focused on relief of suffering for those faced with serious health issues. The services a palliative care team provides are usually covered by Medicare or other types of insurance and are billed just like treatments from any other medical specialist.