How Can Health Advocates Help with End-of-Life Planning? An Interview with Ruth Linden, Ph.D., Part One

In part one of this two-part interview, health advocate Ruth Linden, Ph.D. talks to SevenPonds about how patients can safely navigate the complex healthcare system, especially as they work through a terminal illness. Dr. Linden works as the president of Tree of Life Health Advocates from her office in San Francisco. Her organization serves clients in the Bay Area, Monterey County and other areas of the country via phone or video chat. Learn more about her organization and how they can help you or a loved one by visiting their official website.

Dr. Ruth Linden
(Credit: treeoflifehealthadvocates.com)

Marissa: Thanks for taking the time to chat with us today. When did you decide to become a health advocate?

Ruth: In retrospect, it seems I’ve been doing the work of health advocacy for most of my adult life — overseeing friends’ care during their hospitalizations and helping to sort out treatment options. When I was a research fellow in U.C. San Francisco’s Bioethics Program, I began to accompany a dear friend to her chemotherapy infusions in the outpatient clinics across the street from my office. That was almost 35 years ago. Of course, we didn’t have the term “health advocate” at that time.

Marissa: What made you want to do this type of work? 

Ruth: Health advocacy chose me; I can’t honestly say that I chose it. Unlike many of my colleagues, I have worked in and around healthcare for my entire career as a professor, researcher and activist. Healthcare justice is my passion. I “get” how doctors think and how health systems are organized. My work as a health advocate synthesizes my deep understanding of the culture of medicine with my commitment to systems change, my problem-solving skills and my fierce tenacity.

Marissa: Did you have to go through any specific training to become a health advocate? How do you get into this sort of field?

Ruth: Although specific training is not required, I opted to complete a year-long certificate in patient advocacy at UCLA. That being said, I cannot imagine being an effective health advocate without my training and on-the-ground experience as a medical sociologist — the foundation of my understanding of how the U.S. health system works and why, so often, it falls short.

Marissa: What sort of issues do you help your clients through when you call them? 

Credit: treeoflifehealthadvocates.com

Ruth: First and foremost, my clients need support accessing healthcare services. They might want help firing their doctors and finding new ones. Other clients need second opinions. Still others find it challenging to communicate with their doctors and want me by their side to help them ask questions, clarify their concerns and ensure they’re receiving appropriate care. I recently arranged for a client to be seen in a highly specialized, out-of-state medical practice that provides consultations for patients who have been misdiagnosed or whose diagnoses may be uncertain or incomplete. I have also helped clients who have exhausted their treatment options gain access to clinical trials. Your readers will certainly be interested in knowing that I also help my clients prepare advance care directives.

At the end of the calendar year, during open enrollment, clients ask me to evaluate their health insurance and determine whether their policies provide the best fit and most cost-effective coverage. I am frequently asked to help with insurance claims that have been declined. I am also occasionally approached by individuals with a stack of medical bills they cannot pay. Earlier this month, I succeeded in getting two-thirds of one client’s bills written off by her doctors and hospitals.

Marissa: Why do people need health advocates to do all of this? 

Ruth: Accessing healthcare has become increasingly difficult. For example, finding a primary care provider who is a good match, belongs to your insurance network, and is accepting new patients can be quite a challenge. Knowing when it makes sense to go out of network and pay out-of-pocket costs can be a hard judgment call. Focusing on the right questions to ask your provider and even deciding which symptoms to mention during a 15-minute appointment can feel overwhelming, especially if you are experiencing severe pain and your doctor thinks you are fabricating or exaggerating your symptoms. Even a doctor who dismisses a patient’s symptoms will take an independent health advocate quite seriously.

Tips from Dr. Ruth Linden: When Do You Need a Health Advocate? 

You might need a health advocate if:

• You’ve received a new diagnosis or treatment plan.
• You’re expecting to stay in a hospital, which is a high-risk environment.
• You have a serious or terminal illness and need to communicate effectively with your physicians and family members.
• You’re not sure whether your insurance will cover an expensive treatment plan.

Marissa: How hard is it to navigate the healthcare system alone? 

Ruth: It’s incredibly hard for most of us, especially if we are ill. Even for those in good health or who have only minor health concerns, the complexity of purchasing insurance, visiting doctors and sorting out insurance claims can be overwhelming. But when a person has one or more chronic illnesses, receives a devastating diagnosis, or enters the hospital, navigating the healthcare system without an advocate can add trauma to the mix. I see a form of post-traumatic stress disorder in many clients that I call “iatrogenic trauma,” that is, trauma caused by one or more physicians or even the entire healthcare system.

Having a health advocate at your side doesn’t alleviate past traumas. But it does ensure that a client’s concerns will be taken seriously and acted on by their physicians. An effective advocate has the skills needed to protect her clients and help them obtain needed care swiftly.

Stay tuned next week for part two of our interview with Ruth Linden, Ph.D., where she will discuss how to write an effective end-of-life plan with your doctor.