Aging, distributive justice, ethical challenges, ethics, health care, health care reform, Hospice, medical ethics, medicare
In the continuous conversation regarding fixing/reconfiguring the US health care system, one of the biggest areas of concern relates to cost. The unfortunate truth is that even when it comes to caring for people, money is still a major player. For those in favor of health care reform, many of the arguments tend to be towards distributive justice as a reason to limit care options in situations of “futility.” As we can see from the following article, the question runs deep. If I want treatment, but the medical establishment deems it unnecessary, should insurance still be required to pay? And if insurance doesn’t pay, can I choose to pay if I have money. The following article poses some of these ethical challenges in relationship to end of life care.
While the article raises many valid points, I do take issue with a couple of things. First, it is clear where the author’s bias is, for she includes a swipe at those who argued that the US health care reform bill included discussion of “death panels.” While I do grant that the conservative media completely misconstrued the issue of billing for end of life discussion care, one nevertheless should not be quick to attack those who are fearful of losing the ability to make decisions about when to stop treatment. Sure, we can suggest that people pay if they want treatment beyond what is considered medically sound, but many are afraid of doctors stopping treatment before all avenues are discussed/exhausted. Second, the taxpayer pays for care regardless of what kind of care is provided. Medicare is based on taxed money, regardless of cost. While it is true medicare has overspent on futile care, the health care reform bill was also, in its early stages at least, discussing the possibility of nationalizing health care, which would also be funded by our taxes. And then I, the tax payer, would still not have a say in how the money is spent, only this time, less would be spent as opposed to more.
In financial planning, we first look at client goals and then review whether the client’s actions are congruent with those goals. A step in the process is to break down spending – how much is going for needs, how much for wants, and how much is wasted. We can then get a true picture of what changes need to be made.
The same goes for health care. We are attempting changes from the top down. Figure out the waste, the non-vital services, and the true needs of our health care system. Another effective path is to make changes from the bottom up. If we all do our part, incredible change can happen. The health care system in this country is everyone’s responsibility.
Along with taking care of our health while we can, each of us needs to address our end of life decisions and care. I discussed this in my last two posts and promise this is my last on this topic for a while. End of life conversations are hard. Familiarity breeds comfort, and talking about end of life openly, honestly, and often, will improve how we deal with this guaranteed outcome of birth.
Now I get to the dollars spent at the end of life. In this wonderful country, we have the right to make our decisions regarding health care. And to make the situation more empowering, if we have any insurance, public or private, we don’t have to pay for those decisions directly. It is like going to a buffet in Las Vegas. You pick as much of anything you want, and pay one price. And maybe in the end, you’ll win a jackpot. We know the consequence of this. If no one has to see the bill for treatment, then costs are not considered. This is a big reason why we spend so much money in the last days of life.
Let’s explore an all too familiar situation. “Paw-Paw” is 92, has four children, and many grandchildren. He lives independently, and has lived a great life. Since he is from Wisconsin, he doesn’t talk much so of course he hasn’t shared his end of life wishes with his family.
One day, Paw-Paw’s son finds him sprawled on the floor, still breathing, but unresponsive. At the hospital, the doctors determine he has had a major stroke. They are keeping him alive with life support and providing “full court press” intensive care.
Family flies in from all over the country. What should they do? There are mixed emotions. The doctors say the situation is bleak. If he survives, he will most likely be bed bound, uncommunicative, and will require a feeding tube surgically placed in his stomach. Despite the odds, some of the family members insist on “doing everything.” They are not ready to let Paw-Paw go and hope for the miracle. After a month in the ICU, despite all the best care and equipment, he develops a severe infection and dies. Cost of treatment? Estimates vary, but the bill will most likely be in the $300,000+ range. Money spent unwisely, producing little to no benefit.
Who pays the bill? All of us – through Medicare. As discussed in a previous post, each taxpayer already pays $3,660 of the $7,960 of health care costs per person in this country. Are we getting the most for our taxpayer dollars by keeping Paw-Paw alive? Is it better to spend $300,000 to keep him alive for 30 days, or use that $300,000 to pay for basic preventive and acute care that can save many more years of life? Who should decide how taxpayer’s money is spent? These are hard questions we need to answer. One of the few things England has done right with their health care system is come to a consensus on what care should be paid for with taxpayer dollars. We could learn from this. And the beauty of our great democracy – if Paw-Paw’s family wants to pay for the miracle, that is fine and we should support that decision.
How does the Affordable Care Act address end of life issues? The law originally provided funding for education on end of life issues. Under attack by the death panel squad, this provision was removed. Physicians can still educate patients on end of life care, they just don’t get paid specifically for that education. And throughout the law, any attempt at cutting costs or rationing is emphatically not allowed.
What can we do in the meantime and what needs to happen in the future?
Patients and families:
- Understand prognosis and what happens at the end of life. Have hope, work for the best cure, and prepare for the worst outcome. These choices are not mutually exclusive.
- Stand in unison on decisions – the system is stacked against our wishes being carried out (unless our wishes are to “do everything.”) Everyone speaking with the same voice empowers health care providers to follow those wishes. Having advance directives and discussing them with the family and providers is a helpful step.
- Stand up to the system. Advocate for education on end of life and unnecessary medical interventions. The ABIM Foundation has started Choosing Wisely, a program to do just this, and many other specialty societies have signed on to the cause.
- Take time to educate the family. Learn the communication skills needed to have hard conversations. A great resource is “Fierce Conversations” by Susan Scott.
- Quit practicing medicine from a place of fear. Yes, we need tort reform, and practicing from a place of joy, caring, respect, and using healthy communication is what we should do until we get needed reform.
- Let’s quit demonizing the word “ration” and start constructive dialogue on the best way to use taxpayer’s health care dollars. We already irrationally ration – let’s bring some sense to it.
- Provide support to health care providers by funding education on advance directives, end of life care, and communication skills around these issues. If we learn to respectfully communicate and solve problems, we can go a long way.
Please share your thoughts and comments on this site. You can also reach me on Twitter @CarolynMcC or at firstname.lastname@example.org. I’m grateful for your participation.