Patient Advocates Can Help

If you are having a tough time navigating medical care, patient advocates can help! Last week I was talking to a friend who recently tore the meniscus in his right knee. He was informed by doctor’s office personnel that he needs surgery. He had a few questions, so he requested a call from the doctor before he scheduled. The response: This is standard care for this type of injury and you don’t need to talk to the doctor. He’s going to tell you the same thing I’m telling you.

My friend was taken aback. As a former Division 1 college basketball player who continued his career playing Masters Basketball, he’s accustomed to superior medical care. He’s also used to being treated as part of the healthcare team. When I told him his experience was not uncommon for the average patient, he was shocked. He also wasn’t sure what to do next.

After some searching, I found the information for the associated hospital’s patient experience team and sent him a link. Unfortunately, it wasn’t as simple as a single search within their website. It took several tries with several keyword variations. This is also not uncommon. It is unfortunate.

The healthcare system is often hard to navigate. When you feel sick, injured, and vulnerable, it can be next to impossible. That’s when a patient advocate can help. If you have a family member who is capable and available to serve in this role, that is ideal. But many of us do not have that.

So, how do you find an advocate when you need one? If you use a clinic associated with a hospital, that hospital may have an office of patient experience. Sometimes it may be called the office of patient and family centered care (PFCC). Sometimes just using the keywords patient centered care will get you to the proper place. Other hospitals will have someone on staff called a patient advocate. If you don’t want to search online, call your local hospital and ask for the extension for the patient advocate or patient experience office.

Patient advocates may have a degree in social work or nursing, but they are not functioning in the same role as a hospital social worker or a nurse. They are more like your own personal communications team. When you run into an obstacle like the one my friend did, an advocate can talk to both parties and help find a solution that works for both.

They can also help you understand a doctor’s instructions, help you seek a second opinion, and help you sort through different treatment options. An advocate can assist your family in understanding how they can support you. Because they work within the system you are seeking to navigate, an advocate may have many avenues for solving a problem that you would not know about.

Not all advocates work for a specific institution. Some work for state health departments. Others work for independent services. When dealing with long-term care, you may receive similar services from an ombudsman program.

It’s always hard to ask for help, especially when you feel vulnerable. Learning about the programs available in your area when you’re well is a great way to prepare. The Beryl Institute gives awards to institutions and professionals that innovate ways to improve the patient experience. If you are a member of an underserved population, Centers for Medicare & Medicaid Services (CMS) may have a specialized program to assist you.

You are an important member of your healthcare team. It is important that the rest of the team collaborate with you to achieve the best outcome. That includes creating a treatment plan that considers what’s most important to you. In order to do that, the team must share information and treat you with dignity and respect. Anything less is unacceptable.

There is a shift toward prioritizing the patient experience because it has become a significant measure of hospital quality. That means, now more than ever before, patient advocates and patient experience specialists are available to assist you.

I wish this had been true when I was struggling to get a diagnosis for psittacosis and then celiac disease. But I am grateful things are changing. I feel better knowing that when I need them, patient advocates can help!

Patient and Family Centered Care You can make a difference

When it comes to Patient and Family Centered Care (PFCC), you can make a difference. My family has spent a lot of time in the hospital this past year-more than 160 days since April 2018. That’s a lot of time to observe a lot of things.
Every hospital is different. Like families, each has its own culture. Departments and even units within a hospital have their own subcultures. In some institutions, the lack of an overall policy results in units developing their own policies.

Communication between units is often lacking so a patient may be transferred from one unit to another within an institution only to experience a confusingly different policy on patient communication tools, changing bed linens, who attends rounds, visitor access, response time to patient calls, etc.

As a patient, you are most likely sick, injured, or weakened in some way. On top of that, you are vulnerable to the expertise, decision making, and implementation of treatment plans at the hand of many, many strangers who you have no chance to vet. That is distressing enough. Adding confusion, inconsistency, and unresponsiveness creates an environment that’s, let’s just say, less than healing.

If you have been a patient and/or family member who has experienced less than acceptable care, you may want to explore your hospital’s policies and participation in Patient and Family Centered Care. There could be an opportunity to provide input that will improve the hospital’s process to benefit patients.

Although Patient and Family Centered Care as a concept has been around for more than 20 years, it has not always been treated as important to healthcare. With participation in Hospital Consumer Assessment of Healthcare Providers and Systems Surveys (also known as Hospital CAHPS®) through Medicare and Medicaid and the public reporting of resulting data, hospitals are increasingly focussed on learning about and improving the patient experience. This has brought additional attention to PFCC.

Patient and Family Centered Care seeks to collaborate with patients and families as partners in care. The four basic tenants of PFCC are:
1. Dignity and Respect
2. Information Sharing
3. Participation
4. Collaboration

Simple enough, right? Of course not when you’re attempting to implement these into a system that has avoided information sharing and often treated patients as subjects rather than people. The good news is that you do not need medical training to relate the patient experience so your voice can be powerful in implementing change.

I sit on a PFCC Hospital Advisory Council. Over the past year, we have helped mold new ICU security policies, changed the language used in scheduling phone scripts and advance directives, given input on opioid risk assessment tools and MyChart content, reviewed food service menus, revised design and use of patient communication boards, and helped implement a hospital-wide linen policy.

In May, council members will begin sitting in each hospital unit to observe and speak to the nurses to determine the obstacles that prevent prompt response to patient calls. The information we gather will be transmitted to our Director of PFCC who will then meet with hospital leadership to determine how best to improve response times.

Our council is a mix of volunteers, hospital staff, and an MD who serves as the Associate Chief Quality Officer for Patient Experience. Some volunteers are retired nurses and medical school professors. Others are business people and community members who are patients or patient family members. Volunteers are required to attend orientation, be familiar with hospital codes, and get a yearly TB test and flu shot (or wear a mask during flu season).

For projects like call response observation, we also receive training for the task. It is our role to be a friendly ear to gather information, not to criticize or make suggestions while in the units. If we have specific concerns, those will be communicated to the Director of PFCC for inclusion in her presentation to leadership. The process is working well enough that current hospital leadership has given PFCC a great deal of authority and priority.

If you feel the patient experience could be improved at your local hospital, you may want to volunteer to assist with, or help the hospital explore implementing, Patient and Family Centered Care. Dedicating your time now can result in a better patient experience for you and/or your family in the future.

Given the amount of time my family is having to spend at the hospital, that seems like a worthwhile investment.