This is a topic that comes up from time to time for often spirited discussion. The most recent example comes in a a couple of articles in the New England Journal of Medicine. One was a research paper; the other was a pro and con discussion.
The research paper studied cardiac arrests that happened outside the hospital. The authors tested the premise that allowing families to watch the efforts of the medical team reduce their psychic distress later. One group of patients received usual care, which meant keeping the families away from what was going on. Families of patients in the other group were asked if they would like to observe the resuscitation up close: 79% chose to watch. A medical team member was assigned to be with them and explain everything that was going on. The researchers then followed up with the families 90 days later to determine how many had symptoms of anxiety, depression, or actual post-traumatic stress disorder.
The investigators found a significant reduction in psychological symptoms among family members who had watched the CPR. Also important is that there was no problem with family members interfering with the medical team.
Now comes the controversy. Family observation of CPR is a hot topic among critical care and emergency physicians, and opinions are strong both for and against. This is shown in the next article. It is short — a case scenario of a cardiac arrest, and is well worth reading if you don’t know what we actually do in those situations. Two experts then wrote brief pro and con statements about allowing families to watch. But it is in the comments where things really heated up. Here are some examples:
Being present is more harm to the family
A genie that should not have been let out of the bottle
No family presence for me!
Absolutely no — apart from the chaotic scenes of CPR, I don’t want to be accused by the family bystander that I killed their loved one, do you?
Don’t deny families who choose to be present –support them
Being present far more important for all.
Yes, I support family presence at the bedside during a code situation
And so on, for nearly a hundred comments. Scanning them over, they seem pretty equally divided. I assume the commenters were talking about adults, but this issue always comes up when we have a CPR event in the PICU. For pediatric intensivists, the question of parents observing is I think less devisive. I always ask families if they wish to leave or would like to stay with their child. Nearly all choose to stay. I have heard many times afterwards that they were glad they had the opportunity to participate in some small way. Nearly all the pediatric intensivists I know feel the same way.
I have never had a problem with parents interfering with care in any way. But the demeanor of the team members, especially the physician directing the resuscitation, is key. Resuscitations are stressful — and messy, too. But shouting never helps anything. A calm, firm demeanor is what parents need to see, especially in the doctor. So do the other team members. I’ve been doing this for 30 years and have seen my share of chaos. The way to control that is practice, practice, practice: mock codes keep everybody sharp.
It is crucial, however, that someone be delegated to stay right by the parents and explain what is happening. Usually I designate an experienced PICU nurse, who needs to be ready to support the parents emotionally — physically, too, which means finding chairs or stools as needed. Every parent I have ever dealt with in this way has been grateful afterwards for being allowed to stay.
Maybe adult patients are different; I have no experience with that. But I think parents of a child should always be given the option. It the resuscitation is unsuccessful, it is a good way to assure them that everything possible was done to save their child.
If you’re interested in this issue at all, I highly recommend you read the pro and con piece linked above, especially the comments.
That’s the question noted ethicist (and pediatric intensivist) Robert Truog asks in a recent opinion piece in the New England Journal of Medicine. And it’s a good question, one that any experienced intensivist has probably asked themselves more than a few times during their career. (Although the journal gives free access to most of their opinion pieces, for some reason they didn’t with this one. So the link is to an extract, but but if anybody wants a full copy, let me know.)
I’ve written before (also in reference to an article by Dr. Truog) about the ethics of futile care — that is, care that is of no benefit to the patient. As a matter of principle, physicians are not obligated to provide such care. The question typically arises when a family asks us to use a potentially toxic or painful treatment in a situation in which a child has no chance (in the opinion of the doctors) of recovering. These are not uncommon situations; I’ve written real-life descriptions of a couple of them in one of my books. Yet even though we’re not obligated to do it, are there times when an attempt to resuscitate a terminally ill child is ethical, even necessary?
Dr. Truog thinks there are such times. Some families simply cannot accept, even after long, painful discussions, that their child will not survive. They cannot “give up,” which is how they may see a decision not to attempt CPR. Like Dr. Truog, I’ve cared for a few patients and their families like that. And, like Dr. Truog, I’ve done CPR on such children. I haven’t prolonged it, but I’ve done it, with the parents looking on, sufficiently long to demonstrate its futility. And the families appreciated that I had done it.
I suppose you could say that when I did that I was treating the family, not the patient. More extreme critics might say I was wasting resources or even being disrespectful of the newly dead. Yet there certainly are times, when their child is beyond saving, that it is appropriate to treat the family in this way. I think any intensivist who doesn’t understand that probably hasn’t practiced pediatric critical care long enough yet.
Anyone who works in a children’s hospital, and particularly in a PICU, soon comes to know many children we call technology-dependent. This term includes a wide variety of children with a wide variety of problems, but a good working definition is a child who requires some item of technology to stay alive. This requirement need not be minute-to-minute. For example, some children require feedings delivered by a mechanical pump, either into their veins or into their intestinal tract. If the technology fails for some reason, the parents usually have several hours at least to bring their child to the doctor to fix the problem.
For some technology-dependant children, however, their reliance on machinery really is minute-to-minute — if the equipment fails, it’s a life-threatening emergency. These usually are children on mechanical ventilators — respirator machines. The day-to-day life for these children and their families is complicated. For example, everyone who cares for the child must be trained in how to trouble-shoot the machinery as well as in more than basic CPR if everything quits working. The machinery takes power to run, and every family needs to have a plan for what to do in the event of a power failure. These are only a few of life’s complexities for these children.
How many of these children are there in the community? Those of us who work in pediatric intensive care believe the number is increasing steadily as our technological capabilities increase. Are there any data about this? The answer is some, but not as much as we’d like.
For large university children’s hospitals, the prevalence is quite high. One recent such study estimated 20% — 1 in 5 — of all the children discharged from the hospital were dependent upon technology in some way, and 1% of these needed a ventilator. Of course large, tertiary children’s hospitals see only the sickest of children: what about the general population? The only comprehensive data I could find for the USA are twenty years old, when a study from the federal Office of Technology Assessment estimated the total as 50,000 children (or about 5/100,000 persons) were technology-dependent, 2,000 of these needing ventilators. A 2006 study of just home-ventilated children for the state of Utah found a 25-fold increase over the intervening decades in the prevalence of this most fragile subgroup of children. There is no reason to doubt that what is going on in Utah is not going on in the rest of the country.
Besides complicated lives, these children and their families also have very expensive lives. How expensive? Ten years ago I looked at the bills of several of my ventilator-dependant children, and they ranged from $75,000 to $300,000 per year. At that annual cost many families quickly reach the cap on their health insurance policies. There is help for them, although it varies from state to state (and the process is long and complicated), with such things as Medicaid waiver programs and Supplemental Security Income from the Social Security Administration.
With the number of these children increasing dramatically, accompanied by a corresponding increase in cost to our cash-strapped healthcare system, what are we to do? Anything? In the abstract, I think it is unethical to deny anyone care based upon cost. But the example of technology-dependant children is a real-life example of where the abstractions of the healthcare debates meet the reality of children’s lives. As a society, we can’t buy everything for everybody. Yet amid all the hub-bub of the debate, we can’t lose sight of the plight of these children and their families.