W h at ’ s t h e d i f f e r e n c e ?
IMPROVING PEDIATRIC PALLIATIVE + HOSPICE CARE
The Lighthouse
{
With over 55,000 pediatric deaths per year in the United States, there is a tremendous need for pediatric palliative and hospice care facilities. While this programmatic typology exists in several countries around the world - including over 45 centers in the United Kingdom alone - only two pediatric palliative and hospice facilities are operational in the United States. Offering a spectrum of care that extends from respite to end-of-life, these facilities would benefit over 8,600 children daily in the U.S. In addition to compiling research in order to build a case for the express need for such a facility, I propose that this typology requires a unique organizational scheme that diverges from the traditional program of home or hospital. Rather than adhering to the hierarchies found in a single-family residence, upon which the current model is organized, this new design revolves around the Nurses’ Station as the nucleus of the facility. Additionally, the design relies heavily upon biophilic stratagem and play therapy, which further influence the program and form of the building. These tactics are used to enhance the psychological state of the patient, family, and medical staff and to mitigate the impact of a life-threatening or life-limiting illness.
Short-term care administered at any time (1-7 days)
Provided at any point in the child’s life
Usually administered within the last 6 months of life
Any individual with special needs
Can be continued until the end of life
Giving the patient comfort and peace
Allows parents time away from their child
Relieve the child of physical and emotional distress
No curative measures
Gives the parents time to “recharge” physically and emotionally
Interdisciplinary team supports the patient in any setting
An understanding that the patient will only live for a short period of time
Having their child’s needs met by a medically certified team
Can be administered with or without life-prolonging measures
Halt any medical procedures to prolong life
Cardiac problems, Enlarged heart
Weakened smooth muscles
Low blood pressure
Unusual bone Structures
Early cataracts.
Muscle weakness
Loss of coordination, trouble walking
Dental abnormalities, single incisor tooth
Liver enlargement
Close set, crossed or downward gazing eyes
Ambiguous genitalia
Disturbance of bladder and bowl function
Excessive Urination
Dental abnormalities
Abnormally sized head, seizures, brain malformation Vomiting, gastrointestinal problems
Weakened cardiac muscles
RESPITE
50
~60,000 15-19 years 25.3%
Pa l l i at i v e
Infectious / Immunologic
~28,000
100
Persistent coughing, wheezing, pneumonia
Red or purplish rash
Osteoporosis
Problems with blood circulation (stroke, infection, tissue damage, and fatigue) Learning disabilities Loss of control over movements of arms, legs, torso, or facial muscles Chromosomal Abnormality
Less than 19 years old
~45,000 Chromosomal/ M u lt i o r g a n
M e ta b o l i c / Biochemical
5-9 years 6.4%
Post-neonatal 16.9%
50
0
18,664
RN -
nagers - Hospice
IC
U
&
ri Pe
r-B
ab
urs yN
NO
- Pe
rinat
al Social Work -
Perin ata lC ha
pl
-N
TY NI
VOLUNTEE
RS
Ladybug House
(In Development)
(In Development)
Sarah House (In Development)
GEORGE MARK CHILDREN’S HOUSE
Connor’s House
Is the primary caretaker capable of administering care?
No
HIV/AIDS, infectious mononucleosis Bone and joint infections
Genetic/ Congenital
None
Tracheostomy
Ventilator
Mean Number of Medications per Day
Fluctuating Decline
50
Mortality at 12 month Follow-up
30.3% Median Time from Consult until Death
107 Days
Less than 6 months to live?
Can you afford home care? Is it available to you?
NO
Palliative & Respite Care
YES
Hospice Care
NO
Palliative & Respite Care
Can you afford 24/7 care at a hospital?
NO
YES Does the patient have less than 6 months to live?
Would your child benefit from a supportive community of similar patients?
YES
YES
Does the patient need assistance in activities of daily living?
Does the primary caretaker have time to administer 24/7 care?
YES
i ng
ao n
Crescent Cove
YES
No
Can you afford home care? Is it available to you?
YES
Does the primary caretaker need a break?
YES
Is the primary caretaker capable of administering care?
Are you making frequent visits to the hospital?
YES
Do you have other time commitments like work, a husband or other children?
Home Care
No
Long-term Care Facility (Respite Care)
YES
NO
Palliative Home Care
YES
Long-term Care Facility
Yes
YES
Does the patient dislike the hospital atmosphere?
NO
Is the patient lonely?
Is this making the patient or family uncomfortable?
YES Palliative Home Care
No
Long-term Care Facility (Palliative & Respite Care) YES
Does the primary caretaker need a break?
No
NO
Long-term Care Facility (Palliative & Respite Care)
YES
Long-term Care Facility (Palliative & Respite Care)
No
Long-term Care Facility (Palliative & Respite Care)
NO
No Long-term Care Facility (Hospice Care)
Forget Me Not - Children’s Hospice Darian House - Children’s Hospice Claire House - Children’s Hospice Tŷ Gobaith - Children’s Hospice Northern Ireland - Children’s Hospice L a u r a Ly n n I r e l a n d ’ s - C h i l d r e n ’ s H o s p i c e Acorns - children’s Hospice C h a r lt o n F a r m - C h i l d r e n ’ s H o s p i c e J u l i a’ s H o u s e D o r s e t - C h i l d r e n ’ s H o s p i c e Children’s Hospice sOuth West Little Harbour - Children’s Hospice Naomi House - Children’s Hospice
YES
L
na
C tal
ersh ip -
Ma ase
Complete Patient and Perinatal Care TEAM
Diagnosis
n Ob st e tric ia
Does the patient have chronic pain?
HOW DOES THE U.S. COMPARE?
CANUCK PLACE CHILDREN’S HOSPICE
Are you making frequent visits to the hospital?
NO
-
ity/NICU Lea d
CAL STAF FEDI -M
ne
Ma t e r n
EXHAUSTION
Me dic i
M ot he
DOESN’T HAVE TIME BECAUSE OF JOB
Central Line
Time
&D /
SPACE LIMITATIONS (IE. ONE ROOM APARTMENT)
t gis o lo
lists cia
FAMILY NOT CAPABLE OF ADMINISTERING TOTAL CARE
PRIMARY USERS
at rin Pe
e Sp
FAMILIAL DUTIES OUTSIDE OF PATIENT CARE (IE. SIBLINGS & HUSBAND)
Increased heart rate, fatigue, weakness
Malignancy
NO ist - Pediatric P atolog allia eon tive -N
ric
LIVE FAR AWAY FROM GOOD HOME CARE NURSES
Respiratory failure, Pneumothorax, coughing up blood, damaged airways
Staphylococcus and other skin infections
C h a r a c t e r i s t i c s o f P at i e n t s
Feeding Tube
at
NOT SICK ENOUGH FOR ACUTE CARE
H o s p i ta l
Low blood pressure, diabetes
Lung infections, tuberculosis, pneumonia
W h at d o e s t h e j o u r n e y l o o k l i k e ?
di Pe
Care CANNOT BE ADMINISTERED AT the
FAMILY IS GOING ON VACATION
S
S - COMM ING U
NO MODE OF TRANSPORTATION
WHO ARE THE PRIMARY USERS?
L IB
C
Chromosomal abnormality
Intestinal obstruction
Muscle aches, failure to gain weight or grow, difficulty walking
Neuromuscular
Time
Source: Friebert S. NHPCO Facts and Figures: Pediatric Palliative and Hospice Case in America. 2009.
Care CANNOT BE ADMINISTERED AT
Muscle cells break down
Ages 20-24
1-4 years 9.6%
- PARENTS D L HI
Learning disabilities, epilepsy
0
Source: "NHPCO's Standards for Pediatric Care." National Hospice and Palliative Care Organization.
Why?
Difficulty breathing
50
100
Fragile
Quality of Life
~19,000 10-14 years 7.6%
NEUROMUSCULAR
Brain or nervous system problems, seizures
Time
Less than 1 month (50% congenital or prematurity)
Primary CNS
Upset stomach, diarrhea.
During Infancy (less than 1 year)
Neonatal 34.3%
Cardiopulmonary
HOSPICE
+ 14 , 000
Blocked bile duct
Reproductive system complications
Sudden Death
Time
Quality of Life
400, 000
Jaundice
Bone deformity
0
0
Total Pediatric deaths per year
Cancer
Quality of Life
How Many Children Die in the U n i t e d S tat e s ?
Quality of Life
How old are the children when they die?
Steady Decline
Poor weight gain and growth
Vision loss, Unusual Facial Features
100
100
3 m i ll i on
HOME
Frequent infections
Cardiopulmonary
Slow growth, restricted movement
Neuromuscular
Depression/Psychosis
Immunodeficiency
//The Need W h at d o t h e s e c h i l d r e n s u f f e r f r o m ?
}
Infectious/Immunologic
Skin rash
T r a j e c t o r i e s o f P e d i at r i c Dying
How Many Children in the United S tat e s w o u l d B e n e f i t ?
HOSPICE
//The Patient C h r o m o s o m a l / M u lt i - o r g a n
Un de rg r a du ate H o n o r s T h e s i s S pri n g 2 0 1 6
PALLIATIVE
Primary CNS
B a rr e tt, T h e H o n o rs Co l l e g e T h e D e s i g n S ch o o l - A rch i te ctu re
M e ta b o l i c / b i o c h e m i c a l
J e s s i ca Ca s e Facu lty: Mi l ag ro s Z i n g o n i
RESPITE
Home Care
NO
Long-term Care Facility (Respite Care)
YES
NO
Yes
Long-term Care Facility (Palliative & Respite Care) Would you like to stay with your child and fulfill activities of daily living?
Would your child benefit from a supportive community of similar patients?
NO
YES
Long-term Care Facility (Respite Care) Long-term Care Facility (Palliative & Respite Care)
NO
Palliative Home Care
YES
Long-term Care Facility
Long-term Care Facility (Palliative & Respite Care)
WHERE DO CHILDREN SPEND THEIR END-oflife?
R a c h e l’ s H o u s e - C h i l d r e n ’ s H o s p i c e C h i l d r e n ’ s H o s p i c e A s s o c i at i o n S c o t l a n d Robin House - Children’s Hospice E a s t A n g l i a’ s C h i l d r e n ’ s H o s p i c e Noah’s Ark - Children’s Hospice Richard House - Children’s Hospice Demelza House - Children’s Hospice T h e S h o o t i n g S ta r - C h i l d r e n ’ s H o s p i c e Alexander Devine - Children’s Hospice Christopher’s Children’s Hospice Chestnut Tree House - Children’s Hospice
HOME
HOSPICE
HOSPITAL
When all locations are made relatively accessible for a patient to die, each is chosen roughly 1/3 of the time.
(In Development)
Dr. Bob’s Place
R YA N H O U S E
When pediatric palliative / hospice facilities are not easily accessible
( N o l o n g e r o p e r at i o n a l )
F R E E S TA N D I N G P E D I A T R I C R e s p i t e a n d H o s p i c e C A R E FACILITIES IN OPERATION
When pediatric palliative / hospice facilities made accessible
(Typical in the UNITED S TA T E S )
(Typical in the United Kingdom)
When extremely well-integrated
F R E E S TA N D I N G P E D I A T R I C R e s p i t e A n d H o s p i c e C A R E FACILITIES CLOSED OR IN DEVELOPMENT
into the community, like BC’s Canuck Place, most children and their families choose hospice.
//nurses’ Station As the center of this pediatric palliative and hospice facility, the traditional Nurses’ Station expands to become part of the surrounding gathering spaces. While creating a visual connectivity to the patient rooms through a courtyard, privacy is maintained to increase the comfortability of the patient.
//The Courtyard Biophilic strategies are implemented throughout the facility, reducing perceived corridor length and acting as a “positive distraction” technique for the patients to reduce anxiety and symptoms. Large courtyards intersect the building, influencing the overall form and program to increase the well-being of patient, family and medical staff.
//The Playground Play has been shown to reduce stress and improve communication among pediatric patients. To integrate play into the actual program of the building, rather than isolating it to particular rooms, a theme is implemented as a “positive distraction” technique. Starting from the northern “Ship Court” and extending to “The Lighthouse”, the nautical theme is always prevalent.
//The Lighthouse
The Lighthouse symbolizes the bereavement stage in the experience of the facility, where a chapel and remembrance room are located at the southernmost end of the main circulation path. To enter these spaces, the visitor ascends through a glass hallway passing through a garden towards a colorful stained glass window into the peaceful space and then processes down to the Memory Garden below.
Treasure Trove Court - Outside Conference Room
North Entrance - Looking towards Nurses’ Station
North-South Section
9
8
10
7
12 11
16
13
15
14 1
1 2
3
17
4
18 6
5
2
19
22
20
23
24 25
21 27 3 26
5 4
FLOOR 1 1/32” : 1’
FAMILY / UTILITY 7. Family Room 8. Game Room 9. Staff Break Room 10. Staff Sleep Room 11. Family Conference 12. Laundry 13. Linen
14. Oxygen 15. Family Room 1 16. Family Room 2 17. Medicine Room 18. Tub Room 19. Waste Room 20. Nurses’ Station
PLAY 1. Sensory Room 2. Art Room 3. Media Room 4. Theatre Room 5. Multi-Use Play Room 6. Hydrotherapy
ADMINISTRATION 21. Music Room 23. Break Room 24. Large Conference 25. Small Conference 26. Main Office 27. Welcome Desk
ADE 422: Spring 2016 Barrett Honors Independent Thesis
FLOOR 2 1/32” : 1’
1. Patio 2. Event Space / Multi-Use Gathering 3. Kitchen / Dining 4. Chapel 5. Bereavement
Student: Jessica Case Instructor: Milagros Zingoni