Bedside Manner Went Out the Window

Read the following:
 
“Ms. McMath is dead and cannot be brought back to life,” the hospital said in the memo, adding: “Children’s is under no legal obligation to provide medical or other intervention for a deceased person.”
 
http://www.huffingtonpost.com/2013/12/21/jahi-mcmath-life-support_n_4485119.html
 
Now pretend you are the parent of a child, being informed in this manner, that your precious child is dead, the facility has no further obligation. Read between the lines a bit: what parent wouldn’t think that the message is that his or her child doesn’t matter, that it’s all about business, all about bed space, all about expenses, all about who will foot the bill?
 
This is the nightmare Jahi McMath’s family “woke up to” in Oakland, California, after a failed “routine” tonsillectomy that 13-year old Jahi, soon after the procedure, did not wake up to.
 
And she’s brain dead; just like that! Do your mourning, get over it quickly, and pull the plug already.
 
Putting aside legalities, and there is a legal system (fortunately!) that hears both sides, considers expert opinions, and makes a ruling (that can be appealed), it is important to weigh in on the communication process, some of which has been delved into by the news media as pertains to what Jahi McMath’s family has experienced.
 
The same judge just ruled that the deadline when the hospital can disconnect life support is extended to 8 p.m. ET on January 7.
 
http://www.cnn.com/2013/12/30/health/jahi-mcmath-girl-brain-dead/
 
For more details on what it means to be brain dead see:
 
http://www.cnn.com/2013/12/28/health/life-support-ethics/index.html
 
The article contrasts Jahi McMath’s case with that of Marlise Munoz from Texas who is kept alive because she is pregnant. Texas state law provides that “‘life-sustaining treatment’ cannot be withheld from a pregnant patient, regardless of her wishes or the age of the fetus.” Id.
  
The Uniform Determination of Death Act (UDDA) defines death as follows:
 
An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards.
 
http://pntb.org/wordpress/wp-content/uploads/Uniform-Determination-of-Death-1980_5c.pdf
 
The UDDA includes cardiac and brain death.
 
Regarding the brain death standard, NY provides the following “Reasonable Accommodation”:
 
Hospitals must establish written procedures for the reasonable accommodation of the individual’s religious or moral objections to use of the brain death standard to determine death when such an objection has been expressed by the patient prior to the loss of decision-making capacity, or by the Surrogate Decision-maker. Policies may include specific accommodations, such as the continuation of artificial respiration under certain circumstances, as well as guidance on limits to the duration of the accommodation. Policies may also provide guidance on the use of other resources, such as clergy members, ethics committees, palliative care clinicians, bereavement counselors, and conflict mediators to address objections or concerns. Since objections to the brain death standard based solely upon psychological denial that death has occurred or on an alleged inadequacy of the brain death determination are not based upon the individual’s moral or religious beliefs, “reasonable accommodation” is not required in such circumstances. However, hospital staff should demonstrate sensitivity to these concerns and consider using similar resources to help family members accept the determination and fact of death.
 
http://www.health.ny.gov/professionals/hospital_administrator/letters/2011/brain_death_guidelines.htm  
 
Let’s turn our attention a bit more to the “messenger.” We’ve heard the expression, “Don’t shoot the messenger.” Essentially, this adage absolves the bearer of bad news from any responsibility.
 
But the “how” the message is delivered can fall between two opposite ends that range from machinelike, matter-of-fact, cold, stripped of compassion, details only, blunt, with absolutely no sugar-coating, to compassionate, allowing the family to ask questions, providing scientific details in a soft voice, gentle manner, offering support, etc.
 
When did the “cold, hard, ugly truth” become such a commodity that compassion and kindness takes a back seat?
 
Perhaps there is room in an increasing health care/mental health care business model, where cold, hard cash is the consideration or glue that binds the contract, to help out in the “messenger” role. This is where psychology shines.
 
Having a penchant for scientific evidence, my sense is that, absent a miracle, the outcome for Jahi McGrath likely will not be good. How I wish I could have been there to offer my hand in support, and just reach out to a mother whose heart was shattered. This gesture, as a precursor even to getting to the point where the threshold for a reasonable accommodation was reached.
 
Now I realize that Jahi McGrath’s is but one case in an ethical minefield that deals with death, dying, what it means to be dead, how long to prolong life, and towards what end, including “dead” donor organ transplants.
 
In my humble opinion, medical ethics in death and dying begins with what is or once was a living human being (by whatever definition is accepted), and compassion.
 
For a more comprehensive read on brain death, cardiac death, and the dead donor rule, see:
 
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3372912/
 
Roy

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