End of life care. That’s not a topic that many people want to think about, but we’re all going to die. And thinking about – and talking about -- the various possibilities in order to ensure that everyone – family members and medical personnel – are on the same page so the loved one can have a good death (which I am defining as a death that is based on their wishes) is really important to do as early as possible.
I never had this conversation with my mother. Part of the reason is that Mom already told me when I was in my 20s, “If I begin to have symptoms of dementia like my mother did, you need to take me to the desert, help me out of the car, and then leave me.” That didn’t happen – it would have been illegal – but she made her wishes clear – she didn’t want to linger.
Fast forward several years later when I was with my elderly father (who doesn’t have dementia) as he was admitted into the hospital ICU for an unknown health issue in his abdomen that was causing him to writhe in pain. The surgeon came in and we asked what the options were. “It’s either surgery or he’s going to die,” the surgeon said. That seemed pretty cut and dry so Dad agreed to the surgery. Then the anesthesiologist walked in and started asking questions as he prepared to have Dad sign the consent forms. “What if your heart stops or you quit breathing while on the operating table? Do you want to be resuscitated?” Dad and I looked at each other. “Dorian, what should I do?” Dad asked. I punted the decision back to him, pointing out that it was his decision and that he was of sound mind. I told him that I would take over (as per the medical power of attorney he had completed) if he came back from surgery in a vegetative state. Fortunately, Dad survived the surgery for what turned out to be a perforated ulcer.
Then we got to the point where he lost his ability to swallow because of his overall weakness following the surgery and the tubes going down his throat for a prolonged period of time. The doctors were recommending placing a feeding tube in his stomach. That normally would have been a decision that would have gotten a thumbs-down in our family; in fact, we had braced ourselves because we had agreed that we were going to follow Mom’s wishes and say “no” to a feeding tube when she became unable to swallow due to her Alzheimer’s and chronic obstructive pulmonary disease. (She died before we got to this point, though.) In Dad’s case, we – Dad, my brother and I – followed the doctors’ recommendation since they told us that they were 90-percent sure that Dad could regain his swallowing function with intensive speech therapy. And it turned out they were right.
So needless to say, I am now having those deeper conversations with Dad. Fortunately, Dad already has had these conversations with his primary care physician. And news stories are suggesting that those conversations may soon be more common. That’s because discussions between patients and doctors about end-of-life care may be covered by Medicare in 2015 if a request is approved by the American Medical Association. (The AMA creates billing codes for medical services, which are then used by doctors, hospitals and insurers.) The codes currently recommended by the AMA that would allow these discussions to be covered are being reviewed by the Centers for Medicare and Medicaid Services. If these recommendations are approved, then they become the standard for private insurers. Furthermore, some private insurers already are reimbursing doctors for having these discussions.
Based on my own experiences with loved ones who are nearing the end of their lives, I hope that the politicians who stirred people up over “death panels” stay out of it this time and that these codes are approved. These conversations are important to have. And if you have a loved one in the early stages of dementia, you need to have these conversations as soon as possible and make sure that your loved one’s doctor is involved so that the loved one can voice his or her wishes. Trust me, I’ve learned this firsthand!
Primary Sources for This Sharepost:
Belluck, P. (2014). Insurers starting to cover end-of-life consultations. Houston Chronicle.
Published On: September 03, 2014