Compassion with Staying Power

I talk a lot about compassionate care being a systems issue – not just an individual provider’s responsibility, but also the responsibility of health care organizations and health/insurance policy makers. Actually, I have noticed that people enter health professions with altruism at the heart of their ambition. This altruism is then squashed, or at least tempered, by working in the health care system that we have in the United States, which prizes production and monetary value rather than compassion and true healing. A study out of Canada[1] published just last week analyzed different continuing education programs that aim to teach compassion to health care workers. I want to discuss the nitty gritty findings of this study in depth next week, but this week, I want to talk about a central finding of the study: “prior to implementing compassion training, leadership support should be secured to create an ethos of compassion throughout the organization.”

While this feels intuitive to me, as a provider whose altruism has at times been thwarted and jaded by several different organizations, it was validating to see that statement as one of the three central findings of this research. My own compassionate actions as an individual are only possible and sustainable if my employer supports and values those types of actions. It is challenging for individual health care companies to change their ethos from production to compassion, even though research in the field points to compassion as the missing piece for improved patient outcomes, decreased pain medication usage, and decreased provider burnout. Often administrators’ feel their hands are tied by insurance realities because financial bottom lines do matter, and most private insurances are for profit, publicly traded companies that are raking in unprecedented profits (a topic for another day). If the national health care systems that support local health care companies do not hold an ethos of compassion, it will be impossible for compassionate care to take root as a national standard of care. One such insurance reality was brought to my attention this week, and it demonstrates just how far our country’s health infrastructure needs to go before we can truly say that compassion is a health care value that we practice.

According to their website, Centers for Medicare and Medicaid Services (CMS) covers 1 out of 3 Americans. This is a huge percentage of the population, and often other insurers follow their billing rules. Their rules and decisions heavily influence the inner workings of health care companies. CMS has a process by which they agree to cover new medications that have done well in clinical trials as a way to generate more evidence of the drug’s effectiveness. The process is called Coverage with Evidence Development (CED). This seems like a great idea in practice. Patients get new medications sooner, covered by insurance, and research for different treatments is advanced.

On January 11, CMS put forth a new CED protocol for a breakthrough drug for the treatment of Alzheimer's Disease. This is very exciting for the general public, people who have a family history of Alzheimer's Disease, and perhaps especially for people with Down syndrome, who have a 90% chance of developing Alzheimer's Disease at some point in their lives. The genetic component for the amyloid precursor protein implicated in Alzheimer’s Disease is located on the 21st chromosome. People with Down syndrome exhibit symptoms at an earlier age than the general population, and have a faster disease progression. This protocol excludes people with Down syndrome and other intellectual and developmental disabilities (IDD). By excluding this population from participating in the new CED protocol, CMS is blocking people with Down syndrome and IDD from not only possible life-changing treatment, but also from contributing to research that could propel future treatments. This type of blatant discrimination leads directly to compassion failure in the medical system.

Two posts ago, I talked about the 3 beliefs required for compassionate action. Because this is so clearly NOT a compassionate policy, I want to troubleshoot the beliefs leading to the discriminatory policy.

1. The policy makers do not have a relationship with people who have Down Syndrome or other IDD

2. The policy makers do not believe that people with Down Syndrome or other IDD are suffering when they have Alzheimer’s Disease, or they believe that they somehow deserve that suffering (or do not deserve to have their suffering alleviated)

3. The policy makers do not believe they have the tools to help people with Down Syndrome or other IDD who have been diagnosed with Alzheimer’s Disease

To address point 1, the policy makers have a defined relationship with people who have Down Syndrome or other IDD. I can't know whether the individuals contributing to the policy have specific knowledge of people with Down Syndrome or other IDD, so it's possible this blind spot may have contributed to their decision to exclude the population with the highest risk for Alzheimer's Disease. It's worth noting that CMS is the primary insurance for people with disabilities. To address point 3, this specific CED provides a drug to help people who have been diagnosed with Alzheimer’s Disease, so these policy makers have a tool that may either directly help people with Down Syndrome or other IDD by treating their symptoms, or indirectly by providing research that might lead to a better treatment in the future. These realities indicate, to me at least, that belief 2 is the main problem here.

Unfortunately, our society has historically devalued lives of people with disabilities. People with disabilities have often been excluded from medical research, or perhaps worse, have been allowed to participate in the research but then prevented from reaping the benefits of the research. They and their families have had to fight for inclusion in almost every arena: accessible physical environments, access to education, access to places of worship, access to equipment, and the list goes on. When discriminatory policies such as this CED are presented, families of children and adults with Down Syndrome or other IDD are re-traumatized by a health care system that deprioritizes and minimizes their loved ones' experiences. They read this policy as saying, “Yes, we know your family member is probably going to suffer from a deadly disease, but they don’t deserve to be treated because their lives aren’t as important at baseline.” This creates medical trauma, rather than healing, and it creates distrust in the medical system as a whole.

A medication exists that can temper and decelerate the onset of a deadly disease, but the person most at risk for the disease cannot access it. It is not compassionate to withhold life changing medication...as a national policy. Parents, family members, and caregivers of people with Down Syndrome and other IDD know that even the most compassionate individual providers, in the most progressive and compassionate hospital systems, have to work within this rigid, discriminatory framework. It's not enough, and we cannot progress toward compassionate care if these are the kinds of frameworks in which we have to operate. Compassionate care is a top down and bottom up objective, and without both sides on board, the research shows it will not be accomplished.

If you would like to contact CMS about this blatantly discriminatory policy, you can submit a comment at www.ndss.org/cms-comment

[1] https://www.tandfonline.com/doi/full/10.1080/10401334.2021.2017941#.YfQBI19Cirg.twitter