Reaching the End of Life: What Do We & Loved Ones REALLY Need?
Posted by Warm Southern Breeze on Wednesday, September 26, 2012
Recollecting, one of my patients was similarly diagnosed, suffering terminal lung cancer of the small cell carcinoma type, and had one lung removed. He had presented to the ED (Emergency Department) with extreme hypoxia (lack of oxygen), to such an extent that his lips had a distinctive blue cast to them. His oxygenation was so exceedingly poor, that he would turn in bed, and his sats (oxygen saturation level) would drop to 70% – neither a good, nor one that would sustain life.
In conversation with him, I asked him what he wanted to have happen to him, how he wanted things to turn out for him. He wasn’t under any misguided notion about his state of well-being or health and wanted to depart the ICU.
He said, “I want to go home to die.”
I responded by saying, “We want you to go home too. Let’s see what we can do to get you back there.” At that point, I began some very simple teaching about his breathing. He was a habitual mouth breather, and he knew it. I’d glance up at him, and his mouth would be gaping open as he watched teevee. Problem was, that every time his mouth opened, his sats dropped, even though he was receiving high flow O2 therapy via specialized nasal cannula.
So I instructed him that by keeping his mouth closed and breathing through his nose, his sats would increase. And barring any other unforeseen circumstance, were his sats to consistently maintain above 90%, that would be the greatest step toward his objective to go home.
At the end of my shift, he was consistently satting 98%.
Doctors are practicing irrational medicine at the end of life
I just took care of a precious little lady, Ms. King (not her real name), who reminded me that, too often, we doctors are practicing irrational medicine at the end of life. We are like cows walking mindlessly in the same paths; only because we have always done things the same way, never questioning ourselves. What I mean is that we are often too focused on using our routine pills and procedures used to address abnormal lab values or abnormal organ function, to rightly perceive what might be best for the whole person, or even what may no longer be needed. Our typical practice habits may in fact become inappropriate medical practiceat life’s end.Ms. King was a case in point: She was a 92-year-old nursing homepatient on hospice for metastatic breast cancer. Ms King had been transferred to the ER for a sudden drop in blood sugar, presumably due to her oral diabetes medication. Her appetite had apparently been trailing off, as is common at the end of life, and her medication appeared to have become “too strong.” Her glucose level had been corrected by EMS during her trip from the nursing home to the Hospital, so when I came into see Ms King she was at her ‘baseline.’I opened the door to bed 24 and a grinning little white-haired lady peered at me from over her sheet. “Hi,” she said greeting me first.“Hi, Ms King,” I smiled back at her and picked up her hand.
She reached over with her free hand to pat me on my forearm, “You sure are a cute little doctor,” she said smiling.
I couldn’t hold back a little laughter. “Well, you sure are a cute patient too,” I smiled and winked at her.
She winked back at me.
“Wow, this is the most pleasant 90-year-old I have cared for in a while,” I thought to myself.
As we chatted it became clear to me that she had some mild dementia but had no pain or complaints at the time. She just said, “I think I had a ‘spell’” ( a “Southernism” for some type of unusual and undefined episode of feeling ill or fainting); and “I’m not hungry” when I offered her food.
Leaving her room still smiling after our pleasant exchange, I went back to look at her medical record from the nursing home and two things immediately struck me:
1. She was on 20 medications, only about half of which seemed needed or appropriate to me. For instance, if someone is expected to die from cancer in the next 6 months (which is why she was on hospice care), why should that person take a cholesterol pill every day?
- Is it going to change her outcome? No.
- Will it add to her comfort? No.
- Could it possibly cause unnecessary harm? Yes.
- So, why is she on this medication? No rational reason that I can think of, other than mere habit on the part of the doctor.
- Doctor habit: See an abnormal lab value ( i.e. elevated cholesterol) = give a pill to correct it. While this is a fine default among the rest of the population, this type of unconscious medical practice at the end of life is contributing to wasteful drain of precious and scarce Medicare and Medicaid dollars. We cows (doctors), need to depart from these types of paths. If the usual pill, practice or procedure does not have any benefit for the dying person, if the typical treatment doesn’t create comfort, or may actually harm this person, then DON’T DO IT! Get off this path!
2. She was on hospice care but her order sheet read, “Full Code.” I can never figure this one out. If you or your family member enters hospice care this means that you generally accept that your time on this earth is limited, specifically to less than 6 months or so. Thus, it is irrational to ask for chest compressions or shocks or artificial life support measures when your expected end comes. Right? Didn’t you sign up for hospice because you were wishing for a peaceful, natural death? Well, not everyone agrees with me, so I called Ms. King’s power of attorney to clarify this point, it was her son, Mr. King.
Mr King was a pleasant man who said that he was unable to come to the hospital because he himself had suffered a stroke. After I explained the full code vs Do Not Resuscitate/Allow Natural Death pathway, he said, “Oh No! she never wanted all of that life support stuff. Both of us want what you said, ‘ a natural death.’”
I was curious that he so readily had me change this order, so I asked, “Now, has any doctor or nurse ever had this conversation with you before?”
“Nobody said anything that I could understand.” Was his reply, “but I know what you are talking about.”
I rolled my eyes up and shook my head silently while holding the phone.
How many times do little ladies like Ms. King, who are clearly at the end of life, have “Full Code” orders written or carried out only because:
i) no doctor has every talked to the family, or
ii) the family simply didn’t understand the jargon of the doctor.
- How many times do little ladies like Ms King end up being “coded” with rib crushing chest compression and transported back to the ER, when all they ever wanted was a peaceful end?
- How many times are little ladies like Ms King “resuscitated” only to lie in the ICU on a breathing machine for 2 days before their hearts give out for the final time?
- Would CPR change Ms King’s outcome of death from metastatic cancer? No.
- Would a successful resuscitation ( i.e.restarting her heart despite a crushed rib cage) add to her quality of life? No
- Would artificial life support add to her comfort? No.
- Would seeing her dead body, with tubes sticking out of every orifice, give her family a sense of peaceful closure about her death? No.
- Yet we as a nation pay for these types of outcomes every day, because this scenario happens every day. I contend that this is largely the fault of us doctors, we are failing at having the right conversations in the right way. We are too busy just doing things the way we have always done them, practicing in our default pathways and patterns … and it’s not working!
We have got to start practicing conscious, rational and caring medicine at the end of life. We doctors must ask ourselves, “What medications really matter for this patient?” We must be having conversations that the patients and families can actually understand. We must be talking about how the “high tech” pathway at the end of life may actually create or prolong unnecessary suffering. We must instead focus on communicating that the “high touch,” comfort-focused pathway is most likely to give final peace to all parties- patients and families alike.
Becoming less like cows, and awakening ourselves to these changes in practice pathways will not only rescue our patients and families from needless medical interventions and suffering at the end of life, it might just help save the life of the Medicare and Medicaid systems as well … and that’s something to “Moo” about.
Monica Williams-Murphy is an emergency physician and author of It’s OK to Die.