What I discovered should be shocking to anyone who thinks that their end of life care decisions will be respected…
Over the years I have helped clients establish Revocable Living Trusts. Typically, a trust includes documents like a Power of Attorney for Financial Assets that appoints someone to make financial decisions on your behalf in the event you become incapacitated.
The trust package should also include a Power of Attorney for Health Care in which you name the person(s) that you want to decide your health care decisions if/when you are unable to.
Disturbing Trend in End of Life Care Issues: Will Your Wishes Be Carried Out?
Recently, one of my relatives was admitted to the hospital because of lung and breathing issues.
The treatment that she received was effective and she entered into rehab to help her regain her strength. She was feeling better but then suddenly developed a critical condition unrelated to her previous circumstances. She ended up having to go into emergency surgery.
From a financial planning point of view she did what she was supposed to. She had written instructions that she gave to the hospital informing them that she was DNR and DNI (do not resuscitate and do not intubate). The family was told that during surgery and for 24 hours after, the DNI/DNR would be suspended, as surgery could not be performed if the patient was not intubated. The doctors weren’t sure that she would even survive the surgery, because of her weakened state.
During the surgery, it was discovered that her medical condition was much more serious than first thought and life threatening. When she returned from surgery, she remained intubated and on life support. In the meeting the next morning with the ICU doctor, he repeatedly emphasized that her condition was very critical and several major systems had shut down. But the surgeons were more hopeful, saying other patients had recovered from the same issues and walked out of ICU.
Over the next few days, the family endured the stress and emotional trauma of receiving conflicting advice and outlooks on their loved one’s condition. They struggled to balance giving her every chance to survive while honoring her wishes. In several instances, it was medical personal that made the end of life decisions that had the effect of overriding her and the family’s wishes.
I was confused as to why her wishes were not carried out. What I discovered should be shocking to anyone who thinks that their end of life decisions will be respected.
For instance, it was explained to us that the head surgeon in an operating room has total discretion over whether or not to intubate and/or resuscitate. And there isn’t anything the patient or the family can do about it. In this situation, the doctor was fully aware of her wishes. I didn’t see the forms they had to sign prior to surgery, but I am relatively certain that the form gave the surgeon that authority.
Because of what I witnessed, I started to do some more research and I found out that this is common. I found a blog post, Can Someone Override Your Advance Directive, written by Amy Berman who talks about how her uncle shared his wish, not to extend life when he no longer enjoyed quality of life. This informed perspective came from watching his own mother’s deterioration from Alzheimer’s disease. “My uncle shared his wishes with the family. He designated a health care proxy to ensure that his wishes would be honored.”
“Sadly, he fell, breaking his hip. The fracture needed to be repaired or he would remain in agonizing pain. However, the surgeon refused to do the surgery unless my uncle rescinded his Do Not Resuscitate (DNR) order.”
This brings me to a dirty little secret we aren’t supposed to know about advance directives: providers may pressure patients and families to lift a DNR order.
In some cases doctors ignore advance directives altogether. One reason is that DNRs can hurt the physician’s quality metrics. Physicians–surgeons in particular–do not want a patient dying on their table. Quality measures are increasingly being made available to the public. For example, in Pennsylvania you can enter a surgeon’s name to look up their surgical mortality rate.”
I don’t have any way of verifying the accuracy of this information, but I am concerned at even the possibility that this may become common practice with hospitals and/or doctors.
Suspending the DNR/DNI briefly can make sense in some situations so potentially life-saving surgery can be performed. But imagine the emotional turmoil of having to make the decision to take your mother off life support—especially in the ‘fog of war’ type confusion that occurs when the surgeon and other specialists are hopeful, while the ICU doctor is communicating that the only thing keeping her alive is medical technology and recovery is remote.
The family was unsure of how to proceed until they decided to not just rely on what all the various doctors were telling them, but to see what those same doctors actually wrote on their mother’s medical charts.
When a medical professional read the charts to them, they got a very different picture. Nothing was candy-coated; nothing was couched in comforting and hopeful words.
They finally comprehended the sad reality that recovery was unlikely and even if it happened, their mother would be confined to a nursing facility the rest of her life. The hard decision to stop life support was made easier knowing their mother would never want to live that way.
She passed peacefully, surrounded by her loving family. But had they known the truth sooner, they would have made the same decision days before.
Doctors take an oath to do no harm. They are trained to do all they can to help their patients heal and recover. I cannot imagine the turmoil they experience when faced with patients’ end of life issues on a regular basis.
Their job is to look for hope and to do all they can to save their patients’ lives. But when faced with dire prospects and the plain truth that all of their training and technology cannot do the impossible, some of them have difficulty in communicating this fact to the families that have to make the hard decisions for their loved ones.
In the article, When Doctors Ignore ‘Do Not Resuscitate’ Orders, the author, who is also a doctor, explains “this kind of conversation is hard for doctors in general. We are not nearly as good as we ought to be at talking about the reality that even the best we can offer won’t fix everything, and that everyone eventually dies of something.
“In modern medicine, every death is a defeat, and every illness is merely a chance to prove our worth as diagnosticians and healers.”
It’s interesting to note that this same article reports that in a survey of over a thousand doctors, 88 percent of them reported wanting an advance directive that would stipulate “do not resuscitate” (or DNR) status at the ends of their lives. I wonder if these doctors will have the foresight to prepare their loved ones for the realities of carrying out such directives?
I attended the funeral of my relative last night. In my opinion, the actions of the well-meaning medical professionals to not honor her DNI/DNR, along with their reluctance to be painfully honest about their patient’s condition, resulted in the family having to make the excruciating decision to continue medical intervention beyond their mother’s wishes and eventually, take her off life support.
In retrospect, the family did all they could to follow their mother’s wishes, but would have made different decisions if more accurate information had been made available to them sooner.
Be sure and communicate your end-of-life wishes to those who will be making decisions for you when you cannot. These wishes are personal, unique, and significant to each of us, but if we don’t have plans in place to carry them out, they won’t be. And perhaps, even in spite of our plans, in today’s current health care environment, the sad truth is that they may not be.
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