Tonight's picture was taken in October of 2008. This was classic Mattie. He was in the child life playroom and creating! He literally transformed a big piece of paper into an ocean and then began designing fish and other creatures out of model magic clay. You may notice popsicle sticks too, which Mattie decided to include in his composition. These sticks were forming a car bridge over the water. Unfortunately you can't see the finished product, but the bridge was able to support and transport several hotwheel cars across the water.
Quote of the day: I say to people who care for people who are dying, if you really love that person and want to help them, be with them when their end comes close. Sit with them – you don’t even have to talk. You don’t have to do anything but really be there with them. ~ Elisabeth Kubler-Ross
Today I went to a briefing on Capitol Hill entitled, "The Status of Palliative Care in the United States." There is a myth that is pervasive not only in the public but in our health care system and that is that palliative care is synonymous with end of life care. This isn't the case. Patients can and should receive access to palliative care when managing any healthcare crisis or chronic and long term illness. Palliative care is an added service that you can access within a hospital and the beauty of this service is it doesn't stop when you get discharged from the hospital. This layer of support will be there for you when you are outpatient! Unlike typical medical care which ends on the day of discharge! Palliative care is performed by a health care team, NOT JUST ONE professional. A team of doctors, nurses, social workers, and chaplains, all working on understanding your unique issues and concerns and helping with pain and symptom management, communication issues and problems between the coordination of healthcare providers, and emotional and social support. This team in essence advocates for the patient and gives feedback to the medical team, which can thereby influence and alter the way medical care is provided.
When Mattie was diagnosed with cancer, Georgetown University Hospital did not have an established pediatric palliative care team to assist us. However, with that said, the pediatric chief of hematology and oncology believed in a team approach when coordinating Mattie's care. So we indeed had physicians, nurses, a social worker and a chaplain assigned to us. However, just because you have the team in place, doesn't mean the team is equipped or trained in palliative needs. In fact I learned today that most palliative care fellowships for physicians exist only because of private philanthropy.
The briefing was very interesting and informative today, however, it only presented data on palliative care for adults. This troubled me, so I asked a question about this. What I learned is that adult physicians truly do not have a good understanding for pediatric issues or concerns and they weren't up to speed on the data that exists in the pediatric world. I know this because when I got home I emailed our psychosocial research team, who enlightened me. But the bigger question is why advocate for your profession on the Hill, and silo out children? Children need access to these services and when presenting data, I would have hoped to see the full spectrum of patients covered, and this includes CHILDREN!
In any case, here are some interesting facts presented today....................
The Palliative Care Report Card: https://reportcard.capc.org/
In 1998 only 15% of hospitals offered palliative care services, whereas now 67% of hospitals offer this service (to adults!!). The hospitals which tend to provide such care are hospitals which have 300 or more beds, teaching hospitals, and Catholic Church operated hospitals.
Family experience with Hospitals:
Not enough
contact with Physician: 78%
Not enough emotional support: 51%
No information about
what to expect: 50%
Not enough
help with pain and other symptoms:
19%
What is palliative care?
Specialized medical care for people
with serious illness (doctors, nurses, social workers, chaplains).
Improves quality of life
Provides
an added layer of support
Accompanies life-prolonging and curative
treatments for as long as patients need it.
What do palliative teams do?
Relieve
–Pain and other symptoms
–Distress- emotional, spiritual,
social, practical
–Uncertainty
Communicate
–What to expect
–Treatments that match person and
family priorities
Coordinate
–Medical and practical needs
across settings
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