These groups may be staffed by healthcare professionals, or financial advisers or lawyers, to help patients coordinate their care and fund that care. Their services are sometimes paid for by employers wishing to assist their employees in hopes of getting them back on their feet and returning to work more quickly. Others are willing to work directly with patients who have issues getting correctly diagnosed or treated, or who need help with their health insurance billing and claims.
If the for-profit advocacy group is paid by the patient or one of his benefactors, then the work on behalf of the patient can be considered quite trustworthy. If hospitals offer customer service, it is often through a staff person called a patient advocate. This person can be called upon by a patient or his family member when they run into problems that relate to care or payment for that care.
While these hospital patient advocates may have formal patient advocacy training, most do not. Patients often seek their help when they are frustrated or require assistance for everything from needing a ride home from the hospital, to needing a hospital bill explained.
A hospital's patient advocate can be invaluable; however, empowered patients recognize that this patient advocate draws a paycheck from the hospital. As such, her allegiance will be to the hospital, and she is often not the best person to help in a difficult situation. Like the for-profit advocacy groups, patient advocates in the form of healthcare assistants are in the early years of building an actual career to help patients in these ways.
Not that patient advocates are new; in fact, many of them have worked as "case managers. Because they work directly for the patient, they are highly trustworthy. In the past several years, however, there has been a shift in the way these professionals build their lists of services. A private patient advocate can also help organize information to present a full picture to physicians. Some patients see multiple providers over the course of several years.
During her time as a resident, Mcilnay recalls, she began asking a patient with multiple issues to write problems out prior to her appointment. We would have never gotten to chest pain if she had been going down her list in order. For example, I went to an appointment with a patient and the neurologist asked if he was having any difficulty with urinary incontinence. Yet the disease that the clinician was looking for causes dementia and urinary incontinence.
In each of these instances, patient advocates become a channel for improving communication. I wish I could have focused on my baby without worrying about everything. When my dad and, five years later, my mom, experienced serious, sometimes painful and ultimately terminal illnesses, I wanted to be focused when I was with them.
I wanted to have the energy to be supportive and savor special moments, even just sitting quietly and holding their hand. Stress diminishes the ability to do that. There were times when I thought it would be wise to seek a second opinion, but I was concerned that the current physician would be annoyed. They may even be glad.
Plus, how do you find someone to render a second opinion? Those feelings resonate with colleague Trish Laub , author of the Comfort in their Journey book series and consultant on caregiving and end of life. I later learned that a patient advocate is a person who acts as the quarterback of a care team, coordinating the care and protecting the rights of a person in need of care.
They are truly invaluable. A board certified patient advocate can help reduce the overwhelmed feeling that family caregivers often feel and the very human resentment that can emerge when we are exhausted. Patient advocates provide a spectrum of services related to medical care. There are a few different titles that independent patient advocates may use, including case manager or navigator. The title is not as important as whether the services meet your needs.
When we embrace price transparency, a patient can decide which facility has the most affordable MRI procedure. When we have medical record data transparency coupled with a clinical trials database, a cancer patient can decide the best personal path for their care. Which may include a hospice path, if that is their choice. We have a choice right now. The difference in healthcare is that we have to fight for that choice, whereas in retail it is expected that the customer will decide which items to buy rather than the shopkeep.
How would you like to see healthcare systems and hospitals — particularly public and teaching systems — involve patients or their advocates in meaningful aspects of care best practices, policy making and priority-setting? Patients, caregivers, and patient advocates need to be present in meetings throughout the facility. For far too long we have been forced into the role of lobby designers. We ask that you invite us to take part and provide appropriate recompense for our time.
Or schedule the meeting after the workday is done at the facility. That would be fine. Then everyone at the table can be the unpaid volunteer that patients and family caregivers are so often asked to be. You might want to make sure we can have those meetings next to a playroom though, so our children can play together while we work together to create new policy. Because whether you are a patient or a provider, childcare is expensive.
As far as a healing benefit, the art process is a type of meditation and that can help soothe the soul. It is a very nice feeling to be in the zone and at one with the cosmos. But the creation of art could feel like a nail ramming through my hand, and I would still create. I use art as a tool and the goal is to impact others. He stares at me from that painting like he is still with me. Still alive on pigment covered canvas. Still urging me to help him, a patient.
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