You have no idea what it’s like to be called into a sterile conference room with a hospital administrator you’ve never met before and be told that your mother’s insurance policy will only pay for 30 days in ICU. You can’t imagine what it’s like to be advised that you need to “make some decisions,” like whether your mother should be released “HTD” which is hospital parlance for “home to die,” or if you want to pay out of pocket to keep her in the ICU another week. And when you ask how much that would cost you are given a number so impossibly large that you realize there really are no decisions to make. The decision has been made for you. “Living will” or no, it doesn’t matter. The bank account and the insurance policy have trumped any legal document.
If this isn’t a “death panel” I don’t know what is.
As a matter of fact, I DO know what this is like…I’ve been on both sides of this conversation. I watched my grandma be kept alive for years longer than she should have and for longer than she wanted to. And as a pediatrician, I had to break the news to a mother of a brain dead, healthy-the-day-before, 7 year old who was skateboarding on a sidewalk across the street from someone mowing their yard who ran over a baseball that flew through the air and lodged in the child’s skull. Yes, I had that conversation. It still hurts my heart to remember that mother’s desperate wail. I also remember the kid from the projects whose apartment burned down a few days prior to him trying to climb into his window from the roof to get his Nintendo. The rope broke. He fell 12 stories. His mom also wailed.
It’s always the same heart-wrenching wail. It hurts so badly.
We could have kept this seven year old alive. We had the machines to do that. He was brain dead but every other organ in his body worked perfectly. However, there was no chance he would ever recover. Oh, yes, of course there was. We’ve all heard the stories in the media about people coming out of comas after 15 years and asking for pizza.
So…how do we decide who gets to die and when? How do we, as a culture, mesmerized by the “miracle” of modern medicine and the desperate fear of our own mortality, decide as a culture, and as a family unit, when and how to make life and death decisions?
There are so many complexities in this very typical story you describe here that simply aren’t mentioned. Was your mother expected to live just another month? What were her wishes? Did she have unfinished business she needed to take care of before passing on or was she content with life and happy to have led such a fulfilling life on this earth? Money is only one of the issues these so-called “death squads” should take into consideration. The hospital where I did my residency had an ethics committee and a Palliative Care team that played a vital role in talking with patients and their families about life and death. Money was only one of the components of end-of-life issues. And, yes, the topic of money does need to be addressed. If every single person in America is entitled to the exact same care as President Obama, I think you’d see healthcare in America costing more than double it’s current outrageously expensive price tag. Are you willing to spend double on healthcare today to give everyone in America, rich or poor, the same level of care as Obama? This would literally cost 50% of your pre-tax income if the cost of healthcare were to double for the average family of four in America.
Life is complex. Death and dying is complex. Death squads will absolutely never happen. But palliative care and medical ethics teams are a vital component to a healthcare experience and they are something that should be expanded. A person spends 80% of their lifetime medical costs in the last 2 years of their life. Are we spending our money wisely? Doctors are actually really good at predicting how long someone will live. If they see a 90 year old with kidney failure on dialysis, they can pretty accurately state how long that person will live– 1 month, 6 months, 12 months, etc.. Are we getting our money’s worth by allowing my 90 year old grandmother an extra 2 months of bed-ridden, dialysis-dependent depression?
That’s a hard question. But I concluded, in the case of my grandmother, modern medicine did her a disservice. And I’m 99% sure she agreed. It killed me to see her in that condition kept alive by machines simply because we could AND because of the provision in Medicare that covers dialysis 100% of the time.
Keep in mind, insured dying people are cash cows for healthcare providers. Uninsured dying people are sinkholes. How do we approach both the insured and uninsured and practically talk about death and dying? This is the question we need to answer. And it can only be done on an individual basis by an independent group of professionals trained in ethics and palliative care who do not profit from the results of that discussion.
That being said, I’m very sorry you had to endure what sounds like an unprofessional and untrained person who talked with you in such a difficult setting. Helping people approach death is an art and a skill. It takes a very special person to do such a difficult, badly needed job. Unfortunately, not all doctors are good, passionate communicators.