Palliative care has to be one of the most misunderstood elements of care that I’ve encountered. I count myself amongst the people who knew next to nothing about it before I was diagnosed with a terminal illness. I’d always lumped palliative care in with hospice, frankly, and I’ve discovered that many other people think the same way.

Palliative care is NOT the same as hospice and I believe it is extremely important for the public to understand this.

I really like the World Health Organization’s (WHO’s) definition of Palliative care:

Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Palliative care:

* provides relief from pain and other distressing symptoms;

* affirms life and regards dying as a normal process;

* intends neither to hasten or postpone death;

* integrates the psychological and spiritual aspects of patient care;

* offers a support system to help patients live as actively as possible until death;

* offers a support system to help the family cope during the patients illness and in their own bereavement;

* uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated;

* will enhance quality of life, and may also positively influence the course of illness;

* is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

https://www.who.int/cancer/palliative/definition/en/

Sounds lovely, right? To have a team or even just one doctor totally focused on quality of life of the patient, fully committed to looking at the whole system around the patient and the whole life of the patient, and helping patients and their families understand the illness and each treatment, is amazing. I’ve had a palliative care doctor since I moved to Miami and those are my favorite appointments to attend.

Yet, I’ve learned that my experience is not the norm. Early on in my cancer experience, I learned of a fellow terminal patient who was refused palliative care at a large cancer center because she was terminal. Their definition of palliative care did not include someone who would be in treatment for life.

Since this literally flies in the face of all definitions I’ve seen of palliative care, it really surprised me. Doing further research and discussing palliative care with others has shown me quite clearly that the misunderstandings of palliative care is widespread. Many patients in rural areas have no palliative doctors anywhere near them. Many patients are in systems where a palliative care doc could help, but the only palliative docs are outside that health care system, which doesn’t work as well.

In the course of assisting with the Living Beyond Breast Cancer (LBBC) Metastatic Conference recently, I was able to “meet” virtually an amazing palliative care physician, Dr. Brooke Worster, who is the Medical Director of Palliative Care Services at Thomas Jefferson University Hospitals in Philadelphia. Her program, information about which can be accessed here, approaches each patient from a team perspective, focusing on meeting the needs of the whole patient and that patient’s family. I’ve connected my palliative care doc to Dr. Worster and I’m hopeful that will create even more discussions and interactions for the good of all patients.

Dr. Worster is participating in a new project headed by a friend of mine, Marianne Sarcich, entitled Advocating for Palliative Care. The concept and focus is to identify the barriers to every seriously ill person being offered palliative care, to create a model of providing said care (this is where Dr. Worster comes in) and then bring that model to those who need the information. We are still in the phase of discussing barriers and attracting the best stakeholders to effectively advocate.

If you are interested, contact Marianne and/or join the conversation. Bringing palliative care to those who need it the most is absolutely a worthy endeavor.

Some of you may remember the posts I’ve written about how I often feel dehumanized at the hands of the American Healthcare System. Looking back, I realize that I’ve long felt this way, but since my interaction with doctors and visits to the doctor were so few and far between, it became somewhat expected. Now that I am a professional patient and interface nearly daily with some part of the healthcare system, the affect has become much more pronounced.

As I raged against something that happened recently, my very wise father sat me down and suggested that I look a little deeper. Yes, I was beyond pissed that I’d done my job as a patient 100% correctly, coaching the people I was interfacing with on how to do their job along the way, and then. at literally the last second, ended up having to do parts of their job for them when they failed and nearly didn’t get the scan I needed; but there was something else under that.

Anger is often my go to emotion (who am I kidding, it’s nearly always my go to emotion) because it is often effective for me as an articulate white woman and, as many people have shared with me, I get very scary when I’m angry and this accomplishes what I need. I have been trained to break down and literally shred a person’s confidence in their words/testimony without yelling, without cursing, without name calling, with a hyper focus on the details that rivals many, even with chemo brain. I don’t pull this skill out very often, but it’s in my arsenal and it’s extremely effective. There’s a very good reason that people who encounter lawyers or experience being cross-examined are not happy about it. I’ve been on the receiving end of it and it’s not fun.

But underneath that anger and aggressive cross examination lurks a darker and much more complex emotion, that of feeling powerless or helpless.

Here’s a few examples:

• I am an expert on my own body. When I am told how to feel or my symptoms or feelings are dismissed, it devalues me as a human being and it makes me doubt myself. When my treatment often depends on me noticing and interpreting symptoms for my doctors to evaluate, this could literally set me back in my treatment, cause me to lose function or time, including and up to death. The stakes are too high for me to doubt what I feel or even my intuition, something I struggle with already.
• I have four (4) degrees, two (2) of them graduate degrees, and have run several very successful for profit and non profits, including my own, during my career. I’ve always looked younger than I am and it’s worse now that I’ve switched to very low maintenance habits like not wearing makeup and comfortable clothing. When a minimum wage front desk employee begins to argue with me about something they know nothing about, it sends me into the stratosphere. I confess I’m not good at handling that.
• From a very young age, I’ve had a strong sense of justice, of right and wrong. That sense of justice was built up and strengthened during my years in law school and as a practicing attorney. A large part of the time I spent while practicing was advocating on behalf of foster care children and navigating the issues presented by many governmental agencies like Social Security and Medicaid. When I am confronted with inequities, with inefficiencies, with incompetence, with people who are lying to cover up their mistakes, intentional or otherwise, it offends me in my soul and I don’t stop until I am assured that they will be held accountable. Just in case you are wondering, if someone does a great job, I also don’t stop until I get them some accolades and I’m known to provide presents regularly to people who show me kindness. The one thing I typically am is consistent.
• When I, a terminal patient, am looking to other people I don’t know to do their jobs so that I stay alive, it puts me into a position of needing something from people who either don’t or can’t take the time to get to know me as a person. Seeking help to literally stay alive from a system that treats me like a number contributes in a major way to the powerlessness that I feel daily and that only exacerbates my hair trigger when something goes wrong.

I have to take a moment and acknowledge that many men and women in the black or other minority populations are treated far worse than I and are dealing with even more of this feeling of powerlessness and helplessness much more broadly. I can’t imagine how I would feel if I had even more hurdles to overcome and much of the truth telling in the world today has driven this home to me even more. As much as I struggle with being heard and my pain or feelings discounted, there are many many stories that are far worse. I am acutely aware that I need to use my white privilege to help everyone’s access improve and I promise that I keep that in mind as much as I can.

In light of everything that’s happened, I’ve been working on identifying these emotions and acknowledging them before I go nuclear, before I begin ripping people to shreds, before I start dismantling each person in front of me. Once I sit with that emotion for too long, I’m frankly transported to an awfully dark place. The affect of feeling powerless and helpless for too long has a profound affect on the human psyche.

I don’t like that feeling, AT ALL. I’ll do a whole lot to avoid feeling that way, nearly anything, in fact.

Once I am able to calm down, experience the feelings as they are without the cover of anger, I begin to think about what I could do about it. As I’ve often said, I’m a do-er, nothing makes me feel better than doing something about a situation, even if it’s just filing a complaint or filling out a survey. Anger, frankly, while it helps get a reaction or an answer in the moment, does not often lead to a durable solution and people rarely want to deal with someone who is angry and taking it out on whoever happens to be handy.

A little while ago, I decided that I would try to be part of the solution and I found the highest person in the organization at my cancer center’s parent organization and I scheduled a meeting with him. I’ve been blessed with a connected family and the temerity to call the Chairman of the Board directly to ask for a meeting. He met with me, he took me seriously and he accepted my five (5) page spreadsheet of issues and recommendations.

I realize what I’ve done is not for everyone, so here is a list of practical things that every single person and every single patient can do to turn your powerlessness into action, into a solution:

1. Fill out the comment cards. Nearly every doctor’s office and cancer center I’ve seen has a way to comment. Fill them out. Use names. Use details. These can usually be anonymous, which helps a lot when you are concerned about how a complaint will affect your care. You won’t always know what they do with the cards, but if you don’t fill them out, then they don’t have anything.
2. Fill out ALL the surveys. I get a survey after nearly every appointment. I’ve always filled every single one out. My cancer center also does an annual survey. Out of the thousands who get treatment there, only around 100 people fill it out every year. WHAT?!?!? You can fill this one out anonymously too although I put my name on all of them. It’s simple, it takes just a few minutes and it gives valuable information to the people who need it.
3. When something happens, tell the supervisor. The supervisors need to hear about the good, the bad and the ugly. Again, use names, use details, report contemporaneously when the issue is fresh. This doesn’t have to be in person, emails work just as well and then they have it in writing. The point is, speak up in some way.
4. Find out if your cancer center has a patient advocacy office. My cancer center has one and I’ve gotten very familiar with the director. She can’t always fix things, but she’s in meetings with the leadership, so she can bring up issues, especially when there is a pattern. One note of caution here: there is a stigma to using the advocacy office since no one really likes to be called to the curb by someone who isn’t in their department. I do advise using this option sparingly since usually letters go in people’s files when this department gets involved.
5. Follow Up. Now, I typically insist on a follow up call within 24-48 hours and require details on who and when so I can hold them accountable. I’ve found that if you just make the complaint or report an issue or even fill out a survey, that information can get lost in the shuffle unless there is a specific need that requires immediate intervention. If you follow up, ask what happened, ask what will be changed in the future, ask even how you might be part of the solution, you will get noticed and maybe, just maybe someone will pay attention.

When I can, I really do try to figure out solutions to the issues, especially when I see patterns. I’m usually pretty good at noticing patterns and my experience running offices and working with various types of software gives me insight sometimes. Further than that, I ask questions. I ask about the EMR (Electronic Medical Record) and which department can see what, which department is responsible for what. I build a timeline in my notebooks with people and dates and details because I can never keep it all straight in my head. It helps me to figure out which person to talk to, which team is responsible, which person dropped the ball. This effort, while often satisfying to me personally, takes a tremendous amount of time and effort. I don’t recommend anyone do it often because it drives home that we patients are a commodity, a way of earning money, and efficiencies are often about money, not patient care.

What I do know is that me speaking up has identified issues in the EMR and in the organization of my cancer center that the leadership wasn’t acutely aware of. What I do know is that me insisting on details and accountability makes it harder to ignore the problems. What I do know is that I can communicate these things to executives and people higher up in the organization in such a way that is much harder to ignore. What I do know is that by me being the squeaky wheel, maybe someone else won’t have to.

What I also do know is that I will do a whole heck of a lot to not feel powerless, to not feel helpless; at the end of the day, though, I am. I have no control, I have no personal way to effect this system that takes away my humanity and profits off of my suffering. And all I have to say about that, is its fucking awful. Don’t forget to honor these feelings and to share with your team as much as possible what they do right and where they need to improve.