Palliative Care, my daughter was about 7 the first time I heard the phrase. At the time, my understanding was that it was just another word for Hospice.
As background, my daughter was born in 2000 with Full Trisomy 18. We had received her diagnosis prenatally so we felt that we were as prepared as we could be. We had been told the standard lines by our doctors beginning with “Trisomy 18 is Incompatible with Life.” They couldn’t tell us exactly why she was going to die. Simply that all children with Trisomy 18 die. My doctor actually said to me after I told her about the families and children living with Trisomy 18 that I had met online, “You have to accept it, you aren’t going to have a baby to take home from. This is not a viable pregnancy.” Today that little girl is 13.
So what exactly is Palliative Care and how is it different from Hospice and why does it matter?
Let’s start with what Pediatric Palliative Care is:
As stated by the World Health Organization (WHO), pediatric palliative care “is the active total care of the child’s body, mind, and spirit, and also involves giving support to the family. It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease”
Hospice Care begins when a life threatening illness reaches the final stages when curative measures are no longer being taken. Hospice is for a situation where death is imminent and a patient is taken off life saving procedures and is kept comfortable until the end.
Palliative Care, on the other hand, works to help the patient remain free of pain but in theory also works to help support the patient in a full active life with treatment options to the level of the parents choosing. In other words, only comfort care if that is their choice.
In the case of our Trisomy Children, by this definition, Palliative care would include appropriate and necessary surgeries, procedures, therapies and other measure that will help a child with a “life threatening” diagnosis reach his or her full potential. But is this truly what is offered? That seems to vary depending upon your location and the philosophy of the medical professionals in your area.
So, in its most perfect definition it should be exactly what a family of a Trisomy child should want as the standard of care. Or should they?
A couple weeks ago, in my confusion I asked my daughter’s surgeon her opinion of Palliative Care. “Its an incredible program offering everything a family facing a life threatening illness could need.”
A friend of mine in another state with a child the same age as mine asked her daughter’s neurologist the same question about their local program. The response, “Stay as far away from Palliative care as you can!”
Wow, that’s different. So, what gives? In searching for the truth I have found that Palliative programs and centers are popping up all across North America. Many with programs that offer the same services we have sought out instinctively for our daughter. Many with programs that sound incredible to the parent of an extreme special needs child. A smorgasbord of opportunity. However, would our daughter have even made it this far if she’d been involved with this program?
Why do I ask this, because as I look closely at the “training” that is being provided to aid in setting up these programs rings eerily of the the same dialog we’ve heard since we received Krissy’s diagnosis. Dialog we have avoided because we consciously made a decision when Krissy was born that we would not allow any medical providers, therapists, nurses, you name it around her that did not believe in her potential. We knew the diagnosis and what the possibilities are, we just chose to focus on the possibilities or her life instead.
Taken from a training presentation on Perinatal Palliative Care prepared by a well known Palliative Care physician in Canada, here are just a few points that Trisomy families must be aware of. These are likely to become mainstream thoughts, procedures and protocols if families do not speak up. Original powerpoint found here: http://palliative.info/teaching_material/PerinatalPalliativeCare.pdf
This slide shows Trisomy 18 and Trisomy 13 on a list of “Lethal Congenital Malformations.” Trisomy 18 and Trisomy 13 are not lethal. The anomalies that manifest due to the syndrome are what determine whether or not a child will live.
Doesn’t each child deserve the opportunity to demonstrate their ability to live in this world free of a label?
Another concern is this slide which describes the dialog I referred to earlier:
Life and Death Decisions:
In situations where death will be an inescapable outcome, family may nonetheless feel that their choices about care are life-and-death decisions (treating infections, hydrating, tube feeding, etc.It may be helpful to say something such as:
“I know that you’re being asked to make some very difficult
choices about care, and it must feel that you’re having to make
life-and-death decisions. You must remember that this is not a
survivable condition, and none of the choices that you make
can change that outcome.
We know that because of her illness, she is on a path towards
dying. We are asking you to help us choose the smoothest path,
causing least distress for your baby”
Are you kidding? In every life there comes a time for death and dying but as long as there is a heartbeat there is possibility. Let’s wait to see how this little person presents their issues with the Trisomy that they have been diagnosed with. Let’s first see what the possibilities of life are.
The training goes on to recommend as standard protocol that intranasal Fentanyl (a spray in the nose) be drawn up before the birth, ready to use for pain management:
Now, I fully support pain management but shouldn’t we wait to see if there is any pain to manage? Doesn’t a drug like this make breathing more shallow and less productive? My understanding is that a drug like this doesn’t actually relieve the body of distress, it just makes it so that the body just doesn’t respond to the distress.
We are lucky, I will admit that, our Kristina did not have any life threatening issues at birth. Many of our Trisomy children do have very severe issues and their time spent here on Earth will be brief, that however does not diminish the value of their lives or the love that they share with their families. Every minute is precious.
Families need to be able to rest assured that the very people and services there to support and assist them actually listen to their desires and wishes. It is not necessary to remind a parent of their child’s situation every step of the way. They don’t need to be reminded of the cold hard fact that their child may not survive. These families are well aware of that and if it appears they are not it is because they understand that they must focus on the possibility of life, they must defend their child’s right to life for as long as that child chooses to live. It is their job as a parent.
Palliative care, by definition, should be a program that supports and celebrates the growth, development and potential of every child. But is it? I’m not certain that my daughter or any of the surviving children I know would be here today if we had been involved in a Palliative Care program.
I believe that the idea of Palliative care is a good one. The question is, are children surviving in the program? Over the next few weeks we will be conducting a survey to “unofficially” see what our Trisomy families’ experience has been with Palliative Care. To participate in this survey be sure to register with TrisomyTalk.com and you will be notified when the survey is released.
Please share your comments and experiences with Palliative Care below.