Providing Hope in Pediatric Palliative Medicine

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SS 134: Providing Hope in Pediatric Palliative Medicine

Session 134

Dr. Kelly Komatz, Director of the Hospice and Palliative Medicine Fellowship program at UF, talks about her experience in pediatrics, hospice, and palliative medicine.

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[01:13] Interest in Pediatric Hospice and Palliative Medicine

Kelly graduated over 30 years ago now from medical school. She did a pediatric residency and during her time there, she became very interested in the neonatal intensive care unit. She spent an extra year of training in the inpatient neonatal intensive care unit.

She found out she really missed the outpatient world and caring for these children who had medical complexities. So she left that training and came back out into the community and started being the pediatrician who wasn’t afraid of caring for those children.

'The field of pediatric palliative medicine is in its toddler years now but it's only been around for ten years or so.'Click To Tweet

Kelly was one of the pediatricians that were allowed to take a board exam in order to receive the secondary board certification in pediatric hospice and palliative medicine.

[03:12] Traits that Lead to Being a Good Pediatric Hospice and Palliative Care Specialist

The most important trait is to recognize that it will take time for the families to get to their ultimate decision. Know that the families move at a different pace than we do. Physicians can see the writing on the wall if you will, but the families are not there yet.

'The field of pediatric palliative medicine is in its toddler years now but it's only been around for ten years or so.'Click To Tweet

Essentially, you have to be comfortable with uncertainty. Most physicians don’t necessarily go into the practice of medicine without that as an overwhelming trait. Because you’re usually able to fix things and heal. So this is a bit more different than your typical pediatric practice.

[04:45] The Biggest Misconceptions Around the Specialty

First off, it’s not hospice. Hospice is just a very small piece of what a palliative care physician does. It’s really caring for that patient and the family at their end of life.

Palliative is working with the children and the families who have underlying chronic conditions that will likely result in their death during their childhood years. But it doesn’t mean that they’re dying right then.

Secondly, it is also not a depressing field of practice. Kelly finds this to be very rewarding in working with these families and developing these relationships that really foster trust.

'It's not only end-of-life and it's also not depressing.' Click To Tweet

[06:22] Typical Patient Population

Kelly believes that medicine has become very technologically dependent. Children they see are those coming out of the neonatal intensive care units or the pediatric intensive care units who are dependent upon medical technology.

These are children who are living at home on ventilators, who are on oxygen, and who have feeding tubes on. These are children, who back in the day, may have died or who remained in an institution because of their technology dependence. 

Types of patients they deal with are those with rare congenital anomalies and conditions, children who might have already been out in the community and were healthy. And then they have sustained an injury from an untoward event like motor vehicle accidents and some things along those lines that rendered their life different.

'It's a misnomer to think that all of our children only have cancer or leukemia because that's a very small piece of the children who we care for.'Click To Tweet

[08:20] Typical Day

Kelly underlines another trait that’s useful in this specialty and that’s being able to go with the flow. In her practice, she does palliative care consults.

She will be in the hospital half a day attending morning rounds in the intensive care units and receiving new consults. Then on the other half of the day, she sees patients in medically complex clinics.

These are patients that they’ve already been caring for over the last few years. These are also new patients who are being discharged out of the hospital. And they need a good plan of care of overall pediatric care to help them navigate the system of their medical care in the U.S. and all the different specialists. Their practice is a little bit inpatient and then a little bit of outpatient.

[09:44] The Training Path

One is to complete a residency program first. Most are either completing a general pediatric residency program and then you can apply to a year-long fellowship specifically for hospice and palliative medicine.

If you’re more interested as a pediatric, there are not as many facilities around the country that offer pediatric training. But they are expanding every year. 

A lot of trainees will also have a second specialty. So you’d see people who have done neonatal fellowship training, emergency medicine, intensive care medicine, and hem-onc.

People are looking to blend their pediatric subspecialty training with the added year of providing what is a palliative care overlay onto their daily practices. Or they’re able to split their time similar in being a hem-onc doctor half the time and then doing palliative care the other.

'You have to have your initial training and be board-certified in a general medicine specialty before you are able to go into the one-year fellowship.'Click To Tweet

In terms of competitiveness, it varies right now. In pediatrics, they’re meeting the needs of those that want to practice and come into their fellowships. So she wouldn’t necessarily describe it as competitive as much as where you want to practice.

A lot of sites might only have one or two openings so it’s competitive in that way. But their pediatric palliative community is small. As program directors and fellowship directors, they usually help the trainees that want to come into a fellowship to find a spot if there’s one available.

[13:00] Message to Future General Pediatrician and Subspecialist Pediatrician

The fact is that the majority of us in medicine are trained to do something. And as a provider, it’s very difficult to tell the patient and their family that there’s nothing more they can do.

On the one hand, that statement sounds like there’s nothing more we can do. We’re just going to stop everything.

But in palliative medicine, that’s where they can do a lot. The palliative care team along with the physicians and social workers and nurses can wrap themselves around the family.

'It's very difficult as a provider to look at a patient and their family and say there isn't anything more we can do.'Click To Tweet

They can do a whole lot for that family in helping them with their experiences. They ensure that their answers are what they need to hear. And that the decisions they make are okay. It’s okay to say no to a surgery. It’s okay to say no that it’s time for them to go home.

Oftentimes, it’s very difficult when we’re looking at children to be able to say enough and let’s get the child home and keep them comfortable at home. And stop having them readmitted to the hospital and stop offering on these surgeries.

All this being said, Kelly wishes that more physicians would be able to say enough is enough, let’s regroup on this and look at the total picture. Then ask the palliative care team to come in to be a key player with this patient and family.

[15:36] Working with Other Specialties

Other specialties they work with include all the intensivists, cardiovascular intensive care unit, pediatric intensive care unit, neonatal intensive care, neurology, neurosurgery, and hem-onc. The children access those pediatric subspecialty physicians on a regular basis.

Down the road, they also intercept a lot with orthopedics because families are contemplating whether or not they should have certain surgeries. They work closely with those physicians as they try to make the best decision with the family so they can hear all of their options. Especially what the option would look like if they chose not to do a certain surgery.

[16:45] Special Opportunities Outside of Clinical Medicine

They can work with insurance companies to help them understand the worth of being able to bill and reimburse for your services.

'It is still a toddler type of specialty but the children need to have these services out of the hospital.'Click To Tweet

Even inpatient consult services struggle to meet the bottom line. But then when you’re trying to help these families transition out of the hospital and back into their community, there’s a paucity of availability and a lot of it comes down to reimbursements.

You’re taking care of the family and the child but you’re also trying to help insurance companies understand the worth of what your specialty is able to bring to these children and families.

[18:25] What She Wished She Knew That She Knows Now

Kelly didn’t realize that her philosophy and the way she was practicing medicine with these children had this name of palliative medicine. It wasn’t until the grassroots in the states started growing and she was attending meetings and realized it was actually what she does.

She feels very happy with her job. She actually feels like the old country doctor of Days Gone By because they’re one of the rarities of being able to follow these patients and families over a very long period of time. So they end up becoming part of their family in that way.

'It helps to take care of these patients over the course of time that you're able to journey with them.'Click To Tweet

She encourages medical students and residents to look into getting some experience through electives that are available throughout the country. 

Even if they don’t feel they’re going to practice that field, but if you’re going to one of the specialties like neonatal intensive care emergency medicine or pediatric intensive care. It’s important for them to get exposure to what palliative medicine is so that they have a real-life experience of what it is.

Also, try to see these patients outside of the hospital as they’re functioning and not when they’re sick. Be able to experience the family and the child outside the acute care setting.

[21:23] The Most and Least Liked Things

Kelly loves listening to the stories of parents. She’s currently training in narrative medicine which is a handing glove in her opinion. Just be able to stay present with these families as they’re making these difficult decisions. No one ends up being a parent thinking this is where they’re going to be.

It’s great to have someone available to balance ideas off of or hear from, someone who’s had multiple years of experiences that can help guide their decisions. At the end of the day, it’s the family’s decision. You can’t force them one way or the other.

'If you feel that you gave them their options, they understood, and they're making the best decision for them and their child, then just support them in that.'Click To Tweet

There isn’t another field of medicine that really delves into the depth and the breadth of everything – the psychosocial, spiritual, etc. They really look at the total family and not just the patient at this point in time. But where they come from and where they might be going.

On the flip side, the thing that she least likes is the hours but that’s fine. If it was your loved one or family, you would want that person you trust to be there as you’re trying to go through a very difficult situation.

[24:24] Major Changes in the Future

Kelly is hopeful that the specialty for pediatrics was better recognized for what it could do for these families and children. In order to have that happen, it needs to be looked at as dollar savings. 

As the cost of medicine continues to increase and increase at some point, there might be a bit of glimmer of the possibility of helping them in decreasing the cost of medicine. But then also to increase the quality of life for these families and children.

[26:35] Final Words of Wisdom

If she had to do it over again, Kelly would still have chosen the same specialty. She emphasizes that it’s not for everybody but she would definitely do it again.

Finally, she encourages students that if you’re wanting to care for children that are a little more medically challenging and a lot of different conditions, then it would be worthwhile to go and look at websites where you could get a couple of weeks’ experience with the pediatric palliative care service. They’re all across the country.

Even if you’re headed to another specialty, it’s important to get that experience. It’s not a sad specialty. And until you really come and experience it, it’s difficult to understand how rewarding it could be.

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