Serendipity

About 4 months ago, I received an email asking if I knew about a research program for MAiD, as a patient called in looking for follow up. I offered to make a few calls and check around. On a hunch, I also reached out and called the patient to find out what was going on and to make sure things were okay. It turned out that patient is Jessica Lentz, a palliative and hospice social worker from Portland, Oregon, living with a serious and chronic illness called Dermatomyositis. Over the course of the past months, Jessica and I have gotten to know one another, and we have connected over our shared palliative care social work histories and our humanness. When I asked her to share her narrative with our blog readers, she readily agreed. She has incredible insights both from the clinical palliative care and patient perspective, and her reflections have informed my practice.

In addition to the following reflection entitled “A View From Both Sides of Hospice”, she has a blog with more of her writings. Jess’s narrative is tailored specifically for our CU MSPC blog to both educate and inspire palliative care community specialists:

I’m naturally outgoing and chatty. I can talk to anyone about anything. I’ve always been that way, and it’s served me well in life. Both as a social worker professionally and in my personal experiences. My determination and talking is why I was able to connect with a social worker at the University of Colorado despite living in Portland, OR.

Studies have been contacting me pretty frequently. As someone that paid my way through college working as a research assistant and as supplemental income later. In my quest to help in understanding the experience of Hospice and Aid in Dying, I have been participating in everything. It was through this that I ended up connecting with Melissa. We had a great talk, despite the fact, I didn’t need any assistance from the social worker and have two currently. After hitting it off and sharing that I am trying to document the experience of having a rare disease, having been a social worker, and covering all of the nitty-gritty details of the experience, I was offered the fantastic opportunity to write a piece for University of Colorado Anschutz Palliative and Hospice Care blog.

I was thrilled, because being alive and a part of the greater world as long as possible matters to me. Dying is simply part of living. The end part, but it’s just another part of this wild journey we all take. Unfortunately, it’s taken me months to write this. Primarily, because I have been really struggling with rapid decline but also to keep myself from simply bashing the US healthcare system.

America has some the best healthcare in the world if you can afford it. But our healthcare systems aren’t functional or accessible for many Americans, it’s particularly a hardship for those of us with rare and chronic conditions. The level of care we receive in hospice is what it should be throughout. I’m going to die at 43 years old, because we don’t have that level of care from the start of the patient experience. Not only is adequate holistic healthcare nonexistent until hospice, the lack of home-based services all contributed to me giving up on treatment.

Healthcare is a system and series of institutions which have ingrained bias and bigotry. Systems and institutions are notoriously dehumanizing, and I experienced it firsthand and knew better. Working healthcare is supposed to be a higher calling and not cause harm, or that’s what I was taught when working it. The way patients are treated in the current profit-based healthcare system is harmful and traumatic. One of the biggest obstacles for me as a patient was that I knew how healthcare was supposed to function, as well as my rights as a patient.

I wasn’t shy about demanding my rights and dignity and often requested a Patient Advocate. The Patient Advocate is usually a social worker, and their job is to advocate for me. The average patient doesn’t know Patient Advocates exist, or that they’re not just HR. I’m a social worker, and part of our professional ethics is centering the client. Social Workers advocate for the client first, or at least that’s what we’re supposed to do.

I have worked in healthcare as a CNA and Social Worker. One of my first adult jobs was as a CNA in home health and hospice. I was earning extra money for college, and I was getting medical terminology, charting, and my Red Cross Certification done prior to starting my Social Work education. My plan was to be a Medical Social Worker, so I wanted to understand everything that went into end-of-life care. I was seventeen and had no clue what was going to happen in a few years, and when I became the patient sooner rather than later.

The education and knowledge I gained from my experiences as a CNA and Social Worker would prove to be lifesaving. I’ll forever be grateful for learning from some of the best in the field. I worked in multiple areas of healthcare, or I wouldn’t be writing this today. A critical turning point in determining if I could keep going with a riskier and painful treatment option was the way I was treated by healthcare workers. I’ve been a patient for decades now. Not knowing it was a rare, degenerative, systemic disease for another 8-10 years at least didn’t help.

When a person is at their weakest and most vulnerable state is when the realities of for profit, assembly line healthcare fail. Nothing seemed connected and all were considered acute, but I kept getting worse not better. From the ages of 21-26 years old I had over twenty-six surgeries and invasive medical procedures to “fix” the identified problem. Unfortunately, the problem was a rare disease, Dermatomyositis, which I’d never heard of and neither have most doctors. Eight years after my health started declining, I finally received a diagnosis.

But the years of surgeries, procedures, and dehumanization that happens when you’re the patient took a permanent toll on me. My outlook on medical and healthcare professionals is permanently changed and not for the better. I’m traumatized and terrified of hospitals and especially emergency rooms. I’m hospice because I couldn’t bear treatment and being a patient anymore. I also hoped that I’d get more time from full, holistic care. We called it the “hospice bump,’ because patients would often improve initially under hospice care.

The treatment and focus are completely different than the slash and burn practices used in treating a terminal condition. Our health care model is almost adversarial in nature. We use words like war, battle, fight, and strength to signify the experience of medical treatment for diseases. Violence of it is part of losing one’s humanity. One thing that is crucial to why I survived longer than average is simply good, private insurance.

People with rare diseases just like me are routinely denied necessary treatments and medications, because we don’t fit within a method-based standard of care healthcare system. If you don’t have good insurance benefits and have an income over at least $100,000+ annually, it’s unlikely that treatment and drugs needed will be affordable. One of my creams to keep skin on my hands cost almost $1000 a month, and that was one medication out of twenty-six from my regular pharmacy. Then there are the compounded prescriptions coming from specialty pharmacies that require the patient to bill insurance or are not in-network, and even with good insurance covering 80% for out-of-network one pill was approximately $5,000 with the pharmaceutical company assistance program. How many average Americans can wait for weeks or months to be reimbursed for thousands of dollars.

Meanwhile the drugs for MAiD cost $686 from s specialty compounding pharmacy before insurance. All my care from medications, assistive equipment, bandages, doctors, weekly nurses, social workers, spiritual support, acupuncture, and massage are covered 100% under my hospice benefits. It’s cheaper to die in America than it is to try to stay alive. Even at the top of my game and with my highest salary, as a social worker, I never could’ve afforded my healthcare on my own. My husband’s amazing insurance saved my life for decades.

When I could no longer physically work full-time or part-time consistently, my only independent source of income became a small and heavily taxed Social Security and Disability Insurance (SSDI) check monthly. Making me entirely dependent on my husband financially for the last fifteen years. Being unable to afford respite care or CNAs, my family and friends had to pick up the slack and become caregivers. I needed more than I could give too many times to count. Most would wave that one away, but I know it’s the nature of being sick.

The price tag financially, physically, and emotionally for me and those I love is incalculable. Healthcare or more aptly the lack of affordable and accessible care destroys relationships from the stressors of surviving the American healthcare system. By the time I chose hospice, I was exhausted but wasn’t going to wait until the last minute and spend my final days in agony, so I chose hospice sooner than later. Too many people buy into the battle and warrior mythology surrounding disease and miss enjoying the end of life. It’s been a better experience than treatment, and I’m hitting the end of my journey.

It’s oddly precipitous that due to physical complications and changes, I couldn’t write and finish this piece up, when I intended two months ago. We’re talking about the cost of healthcare, and a very public display of rage against the insurance systems. It’s never just one person to blame or responsible. Healthcare is a bureaucratic system, and we need to examine it and change, so everyone can have the choice between continuing treatment, doing treatment but with a focus on palliative care, or choosing to stop and transition to hospice. Currently, we have weapons that destroy that cost less than the medications that help. We can change that much.

What is most frustrating and unnecessary is that we have a better model. We know the benefits of robust palliative care. The benefits of hospice are seen in the people graduating hospice, although that’s more cut than supportive care for patients. Regardless, the point is hospice care is patient focused and holistic in nature. It supports the whole family system and allows the patient, me, to retain some last vestiges of dignity and humanity.

All these words sum into one thing-we can do better for healthcare in America. We already have a working model, and it’s what I learned from. The cost of a death shouldn’t be less expensive than healthcare to live. We need to do away with the archaic war and violent language surrounding healthcare and embrace the hospice model I was taught in my years working. Countless lives could be saved from physical and financial ruin.

I wouldn’t have known how to navigate it or survived this long if I hadn’t started out in healthcare and hospice as a social worker and advocate. Most people don’t, and it’s destroying lives. As professionals with knowledge of the healthcare system and a better way to apply care, we can be leaders in the change. The greatest changes come from groups of dedicated individuals that are willing to use their voices. People like me desperately need you to speak up now, before hope is lost.