The Lighthouse: Improving Pediatric Palliative and Hospice Care by Jessica Case

IMPROVING PEDIATRIC PALLIATIVE + HOSPICE CARE

The Lighthouse

Jessica Case Faculty: Mil agros Zi n g o n i Arizona State Univer si ty Barrett, The Honors Co l l e g e Herberger institute fo r D e si g n a n d th e a r ts Architecture Undergraduate Hono r s T h e si s Spring 2016

Introduction

//The Issue

//The Need

The Problem

//The Patient

//The Precedent

The Parts

//The Nursesâ&#x20AC;&#x2122; Station

//The Courtyard

//The Playground

//The Lighthouse

Bibliography

A simpl e chil d, that l i g h tly d r aw s its breath, And f eels i ts l if e in every l imb, W h at sh o u l d i t know of death? Wil l iam Wordsworth (1 7 9 8 )

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 singlefamily residence, upon which the current model is organized, this new type of design revolves around the Nursesâ&#x20AC;&#x2122; 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.

â&#x20AC;&#x153;Rel iabl e statistics fo r c h i l d r e n who receive PP/H C se rv i ce s remain dif f icult to pa r se fr o m ex isting sources. I t i s a l so dif f icult to characte r i z e ch i l d r e n who might be ap pr o pr i ate o r el igibl e f or servi c e s b e ca u se this characterizatio n i s a m ov i n g target.â&#x20AC;? National Hospice an d Pa l l i ati v e Care Organization fac ts a n d f igures (2015 Edition)

ntroduction

//The Issue

Everybody dies. The causes are many and circumstances vary, but this underlying fact has remained unchanged thus far in human history. Science has improved and lives are getting longer, but the last breath will eventually come for everyone. Acknowledging that death is an unavoidable part of life should be reason alone to improve end-of-life care for all. Though it is human nature to avoid thinking about the loss of your own life or of the life of a loved one, it is necessary to discuss the inevitable end-of-life experience. Ideally, the process should be made as comfortable and dignified as possible, no matter the age, ethnicity or gender of the human being. This final farewell is a relevant and important discussion that must be in the forefront of society. However, the topic of death is still a taboo for many Americans, thus making improvements difficult.1 Nobody wants to talk about death, especially the death of a child. Unfortunately, approximately 60,000 infants, children and teenagers die every year from numerous unavoidable conditions or accidents.2 This fact alone makes the discussion worth our time and attention, which is not the case in the United States. As a country 1 - Laura Novak. “A Home Away From Home for Dying Children,” The New York Times, February 10, 2004, 5. 2 - Chris Feudtner, M.D., Ph.D., M.P.H., Wenjun Zhong, Ph.D, Jen Faerber, Ph.D, Dingwei Dai, Ph.D, and James Feinstein, M.D., M.P.H. “Appendix F: Pediatric End-of-Life and Palliative Care: Epidemiology and Health Service Use.” In Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington (DC): National Academies Press (US), 2015.

we are endlessly optimistic, making it unthinkable to most that a parent would have to watch their child go through end-of-life with no hope of a cure.3 In the American mind, palliative and hospice care is immediately correlated with care for those over 60 years old; it is too painful or uncomfortable to think of children dying. As medicine and technology improve and mortality rates decrease in the United States, it becomes easy to assume that the death of a child is an anomaly. In fact, the number of complex care children (CCC) is rising in the United States. As technology improves, children with life threatening health problems are able to live longer or survive extreme prematurity, usually requiring the services of a pediatric palliative care team.4 Rarely published on popular media outlets, this subgroup is easy to overlook in today’s positivity-centric culture.5 Bringing awareness to the subject is one of the key factors in making a change to the existing pediatric palliative and hospice community.

3 - Fred Mogul. “Too Many People Die In Hospital Instead Of Home. Here’s Why.” Kaiser Health News, September 22, 2014, accessed March 12, 2015, LexisNexis Academic. 4 - US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. The National Survey of Children with Special Health Care Needs Chartbook 2009-2010. 5 - “Pediatric Long-Term Care...Long Overdue.” Melnic. Accessed February 11, 2016. http://www.melnic.com/pediatric-long-term-care.jsp.

//The Need

It is important to understand the sheer size of the population that would benefit from a pediatric palliative or hospice team in order to fully grasp how unprepared the current system of care actually is. To find such a seemingly simple number, there is an exceedingly confusing and complex answer. In their 2015 Edition of Facts and Figures, the National Palliative and Hospice Care Organization (NPHCO) explains, “Reliable statistics for children who receive PP/HC [pediatric palliative/hospice care] services remain difficult to parse from existing sources. It is also difficult to characterize children who might be appropriate or eligible for services because this characterization is a moving target”.1 Currently, there are several issues related to how data is being collected in the United States. This includes differences in “definitional and prognostic criteria”, accessibility to pediatric programs, nomenclature usage and patient characterization. For example, the age that is considered “pediatric” varies across programs, as there is no legal threshold in existence.2 For some, a pediatric patient may range from 0-19 while others may consider a patient pediatric up to 24 years old. This skews the data 1 - “NHPCO’s Standards for Pediatric Care.” National Hospice and Palliative Care Organization. Accessed January 24, 2016. 2 - Chris Feudtner, M.D., Ph.D., M.P.H., Wenjun Zhong, Ph.D, Jen Faerber, Ph.D, Dingwei Dai, Ph.D, and James Feinstein, M.D., M.P.H. “Appendix F: Pediatric End-of-Life and Palliative Care: Epidemiology and Health Service Use.” In Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington (DC): National Academies Press (US), 2015.

tremendously, when it is considered as a single body of evidence. The nomenclature used in any given circumstance is an additional barrier for getting a solid data set. For instance, epidemiological data, or information focusing on disease prevalence in a given population, might only focus on children who die or children with complex care conditions. Conversely, pediatric palliative and hospice programs encompass those with life-limiting conditions or life-threatening conditions.3 It is extremely difficult to understand the available status of the palliative population when there is not a consistent way to collect the data. We can, however, make educated estimates at how many children would benefit from palliative and hospice care based on disease-related diagnostics and death rates in the United States. This can, at the least, demonstrate a certain and undeniable understanding that there is a significant need for an improvement in pediatric palliative and hospice care in the U.S. We can begin our attempt at understanding the breadth of need by looking at the Supplemental Security Income (SSI) eligibility of children in the United States. Since 1994, the SSI Program has guaranteed a minimum income for citizens who It is important to understand the shear size of the population

3 - Sarah Friebert, MD, and Conrad Williams, MD. NHPCO’s Facts and Figures Pediatric Palliative & Hospice Care in America. Report. 2015 ed. National Hospice and Palliative Care Organization.

incomes are too low to adequately provide for their child on their H o w M a n y C h i l d r e n i n t h e U n i t e d S tat e s own, thus excluding children with complex care conditions from any would Benefit? family above that minimum income level. The National Hospice and Palliative Care Organization recognizes at least 400,000 children as having chronic, life-threatening conditions out of the entire pediatric population. Furthermore, NHPCO states that approximately 53,000 RESPITE 3 million children die every year in the United States. More specifically, out of 18,888 pediatric deaths in 2013 (ages 0-19), non-preventable deaths accounted for three-fourth of total deaths.6 Generally, Pa l l i at i v e these are the patients targeted by palliative and hospice care 400,000 teams. However, a palliative or hospice team can certainly care for patients who have a “preventable” complex condition, including one attributed to an unintentional injury. An example of this type of situation could include a child who had a near drowning experience HOSPICE and suffered severe brain damage due to oxygen deprivation. +14,000 Conversely, it is important to understand the most prevalent “non-preventable” conditions that would attribute to a patient’s qualification for palliative or hospice care. The top causes of death for complex care condition (CCC) infants (<1 year of age) in the United States are characterized as cardiovascular, congenital/ genetic, respiratory and neuromuscular complications. Conversely, the top causes of death for complex care children in the age range of 1-19 years were malignancy, primary central nervous system, metabolic/biochemical, neuromuscular and cardiovascular disorders.7 Descending in frequency, the most common groups Source: "NHPCO's Standards for Pediatric Care." National Hospice and Palliative Care Organization. in which PP/HC pediatric diagnoses are categorized are cancer, primary CNS (central nervous system), metabolic/biochemical, have complex care conditions and/or disabilities.4 Though this neuromuscular, cardiopulmonary, and infectious/immunologic encompasses a broader subgroup than those in need of palliative disorders.8 The symptoms and trajectories for the diseases care, it is a starting point from which to narrow our consideration encompassed in these categories vary widely, including sensory, of the following data. In October 2012, 1.3 million children were considered SSI eligible and received monthly aid.5 It is worth repeating that these benefits are only given to those families whose 6 - “NHPCO’s Standards for Pediatric Care.” National Hospice and Palliative 4 - SSI Annual Statistical Report, 2013. Report no. 13-11827. Social Security Administration, 2014. 5 - Cathy Ruffing, and LaDonna Pavetti. Center on Budget and Policy Priorities / SSI and Children with Disabilities: Just the Facts. Report. December 14, 2012.

Care Organization. Accessed January 24, 2016. 7 - Sarah Friebert, MD, and Conrad Williams, MD. NHPCO’s Facts and Figures Pediatric Palliative & Hospice Care in America. 8 - H. Siden, M. Miller, L. Straatman, L. Omesi, T. Tucker, and J. Collins. “A Report on Location of Death in Paediatric Palliative Care between Home, Hospice and Hospital.” Palliative Medicine 22, no. 7 (2008): 831-34.

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 ?

Cancer

Infectious / Immunologic

Cardiopulmonary Primary CNS NEUROMUSCULAR

M e ta b o l i c / Biochemical

CHromosomal/ M u lt i o r g a n

Palliative Care Organization recognizes at least 400,000 children as having chronic, life-threatening conditions out of the entire pediatric population. Furthermore, NHPCO states that approximately 60,000 children die every year in the United States. More specifically, out of 18,888 pediatric deaths in 2013 (ages 0-19), non-preventable deaths accounted for three-fourth of total deaths.10 Generally, these are the patients targeted by palliative and hospice care teams. However, a palliative or hospice team can certainly care for patients who have a “preventable” complex condition, including one attributed to an unintentional injury. An example of this type of situation could include a child who had a near drowning experience and suffered severe brain damage due to oxygen deprivation. Conversely, it is important to understand the most prevalent “non-preventable” conditions that would attribute to a patient’s qualification for palliative or hospice care. The top causes of death for complex care condition (CCC) infants (<1 year of age) in the United States are characterized as cardiovascular, congenital/ genetic, respiratory and neuromuscular complications. Conversely, the top causes of death for complex care children in the age range of 1-19 years were malignancy, primary central nervous system, metabolic/biochemical, neuromuscular and cardiovascular disorders.11 Descending in frequency, the most common groups in which PP/HC pediatric diagnoses are categorized are cancer, primary CNS (central nervous system), metabolic/biochemical, neuromuscular, cardiopulmonary, and infectious/immunologic disorders.12 The symptoms and trajectories for the diseases encompassed in these categories vary widely, including sensory, muscular, skeletal, cognitive, psychological, respiratory, digestive and cardiac impairment. When looking at the death toll by age range, over 50% of child deaths occur before 1 year old. This

encompasses a broader subgroup than those in need of palliative care, it is a starting point from which to narrow our consideration of the following data. In October 2012, 1.3 million children were considered SSI eligible and received monthly aid.9 It is worth repeating that these benefits are only given to those families whose incomes are too low to adequately provide for their child on their 6 - “NHPCO’s Standards for Pediatric Care.” National Hospice and Palliative own, thus excluding children with complex care conditions from any Care Organization. Accessed January 24, 2016. family above that minimum income level. The National Hospice and 7 - Sarah Friebert, MD, and Conrad Williams, MD. NHPCO’s Facts and Figures 5 - Cathy Ruffing, and LaDonna Pavetti. Center on Budget and Policy Priorities / SSI and Children with Disabilities: Just the Facts. Report. December 14, 2012.

Pediatric Palliative & Hospice Care in America. 8 - H. Siden, M. Miller, L. Straatman, L. Omesi, T. Tucker, and J. Collins. “A Report on Location of Death in Paediatric Palliative Care between Home, Hospice and Hospital.” Palliative Medicine 22, no. 7 (2008): 831-34.

How old are the children when they die?

15-19 years 25.3% Neonatal 34.3%

How Many Children Die in the United S tat e s ?

Total Pediatric deaths per year

~60,000 During Infancy (less than 1 year)

~28,000 Less than 1 month (50% congenital or prematurity) 10-14 years 7.6%

~19,000 Less than 19 years old

Post-neonatal 16.9%

5-9 years 6.4% 1-4 years 9.6%

~45,000 Ages 20-24

18,664 Source: Friebert S. NHPCO Facts and Figures: Pediatric Palliative and Hospice Case in America. 2009.

number drops to 16% for children in the age range of 1 to 9 years old and then rises again to approximately 34% for children 10 to 19 years old.13 Though death is much more prevalent in neonatal and post-neonatal children, this is not necessarily indicative of the population seen in pediatric palliative and hospice care facilities. This is because many of the infants born with life-limiting conditions 9 - Ann Marie Case, FAAP, Andrea North Cut, MAMFC, MARE, BCC, and Kenna Hamm, LMSW. “Building the Family Cradle: A Team Approach to Palliative Perinatal Patient Care Conferences.” Pediatric Hospice and Palliative Care Essentials Fifth Annual Conference. 10 Aug. 2013. Lecture.

are too fragile to leave the NICU or have too short of a life to take advantage of the hospice care available. Therefore, along with infants, many of the children who will be utilizing these services will be toddlers and young adults. While understanding the different markers for these disorders is important, we should remember that in each of these numbers is a real child who would benefit from personalized care. In the words of Maimonides, “There is a general rule, and I have seen great physicians acting on it, that the physician should not treat the disease but the patient who is suffering from it” (1135-1204). Though we will continue to look at the issue from an extremely impersonal perspective, it is important to remind ourselves of who sits within the vast sea of statistics.

Why? Care CANNOT BE ADMINISTERED AT

HOME

NO MODE OF TRANSPORTATION

FAMILY IS GOING ON VACATION

NOT SICK ENOUGH FOR ACUTE CARE

Care CANNOT BE ADMINISTERED AT the

H o s p i ta l

LIVE FAR AWAY FROM GOOD HOME CARE NURSES

FAMILIAL DUTIES OUTSIDE OF PATIENT CARE (IE. SIBLINGS & HUSBAND)

FAMILY NOT CAPABLE OF ADMINISTERING TOTAL CARE

SPACE LIMITATIONS (IE. ONE ROOM APARTMENT)

DOESN’T HAVE TIME BECAUSE OF JOB

EXHAUSTION

Though the demographical knowledge is vital, it was mentioned previously that pediatric palliative and hospice care prefers to look at children with life-limiting conditions and lifethreatening conditions rather than solely the death tolls. This is because there are many children who are living through their entire childhood requiring assistance with daily living and palliative care without hospice. The closest estimate that The National Hospice and Palliative Care Organization could find for the children that would need palliative services was 8,600 children per day, found by the Children’s Palliative/Hospice Services in 2001. Additionally, they found that 5,000 children on a given day were in their last 6 months of life, or eligible for hospice care.14 It is likely that this information is most likely missing and many of the children who are either unaware of palliative services or unable to access the services that they would need, thus being left out of any statistical 10 - National Hospice and Palliative Care Organization. ChiPPS White Paper: A call for change: recommendations to improve the care of children living with life-threatening conditions. October 2001.

data. NHCPO’s extremely optimistic estimate is that only 20% of children who die receive palliative care at all. Over 40% of adults currently receive palliative care at end-of-life.15 This difference is deeply concerning considering the fact that so many of these children are dying without being able to communicate the pain that they feel both physically and psychologically. The pediatric palliative team is simply unavailable due to scarcity, leaving the patient and their families in the hands of a medical staff who is unprepared to deal with the physical and psychological issues that accompany a complex care condition. U.S. Department of Health and Human Services states that 11.2 million children in America have special health care needs, with 27% of these children having “conditions that affect their activities usually, always, or a great deal and could potentially benefit from PP/HC.”16 That is over 3 million 15 - “NHPCO’s Standards for Pediatric Care.” National Hospice and Palliative Care Organization. Accessed January 24, 2016. 16 - US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. The National Survey

W h at ’ s t h e d i f f e r e n c e ?

{

RESPITE

PALLIATIVE

HOSPICE

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

}

American children who would benefit from palliative and/or hospice care at some point, meaning 8,600 children would benefit daily.17 Currently, we do not have a governmental or medical infrastructure robust enough to adequately handle this amount of children. Before proceeding, we must take the time to define some of the various kinds of care that can be administered to a pediatric CCC patient. Respite Care is essentially a ‘babysitting’ service for patients who require continual technological or nursing support. This service gives the caretaker a break from watching over the child of Children with Special Health Care Needs Chartbook 2009-2010. 17 - Cynda Hylton Rushton. “A Framework for Integrated Pediatric Palliative Care: Being with Dying.” Journal of Pediatric Nursing 20, no. 5 (October 2005): 311-25.

continuously, giving them a much needed break to tend to other members of the family, to work or to themselves.18 Respite care is not currently covered by any type of insurance, requiring families to pay ‘out of pocket’ or, if available to them, utilize pediatric care centers, like Ryan House, who pays for 28 days of respite care a year per family through philanthropy. Palliative Care is synonymous with the symptom management for the child and family. This induces physical and psychological distress and bereavement support that it administered by a perinatal and pediatric medical care team that consists of an obstetrician, a perinatologist, a neonatologist, a pediatric palliative medicine specialist, various pediatric specialists, maternity/NICU leadership, L&D/mother-baby nursing specialist, social workers, chaplain, case managers, registered nurses and more.19 This team provides a continuum of care in which the patient is constantly being monitored and tended to by medical professionals, whether at home, in a care facility or in a hospital. Short-term Care refers to a stay that is usually under 90 days. This can include “nutrition assessment and support, seizure management, medication management, post-surgical care, interdisciplinary assessments and therapy (such as rehabilitation services), pain management, and end-of-life care”.20 Depending of the situation, short-term care can be funded completely or partially by private insurance, governmental support or ‘out of pocket’. Hospice Care refers to the last 6 months that a person has to live and is usually covered by insurance. This type of care provides “medical care, pain management and emotional and spiritual support” to patients with life-limiting illnesses.21 Once a patient decides to employ the use of either hospice care, they have understood and accepted that their 18 - “Pediatric Long-Term Care...Long Overdue.” Melnic. Accessed February 11, 2016. http://www.melnic.com/pediatric-long-term-care.jsp. 19 - Ann Marie Case, FAAP, Andrea North Cut, MAMFC, MARE, BCC, and Kenna Hamm, LMSW. “Building the Family Cradle: A Team Approach to Palliative Perinatal Patient Care Conferences.” Pediatric Hospice and Palliative Care Essentials Fifth Annual Conference. 10 Aug. 2013. Lecture. 20 - “Pediatric Long-Term Care...Long Overdue.” Melnic. Accessed February 11, 2016. http://www.melnic.com/pediatric-long-term-care.jsp. 21 - “Hospice Care” National Hospice and Palliative Care Organization. http:// www.nhpco.org/about/hospice-care.

CAL STAF I D FE M -

PRIMARY USERS

VOLUNTEE R

gi o lo

ativ e

Me dic i

ric at

Ob st e tric ia

tologist - Pediatric Palli

di Pe

na Neo st -

at rin

TY NI

- PARENTS D IL -

S - COM M ING U e Sp Ma t e r n

nagers - Hospice

RN -

lists cia

Ma ase

ip -

lC ata

ity/NICU Lea ders h

Complete Patient and Perinatal Care TEAM in er

& U

r-B

M ot he

&D /

urs yN

i ng

- Pe

rinat

al Social Work - Perin ata lC h

ap la in

-N I

22 - Tom Daschle and Tommy Thompson. “Who will care for America’s aging population?” The Washington Post, November 21, 2013, accessed March 19, 2015, LexisNexis Academic. 23 - Fred Mogul. “Too Many People Die In Hospital Instead Of Home. Here’s Why.” Kaiser Health News, September 22, 2014, accessed March 12, 2015, LexisNexis Academic. 24 - Ann Marie Case, email to author, March 25, 2015 (7:01 a.m. CT). 25 - Cynda Hylton Rushton. “A Framework for Integrated Pediatric Palliative Care: Being with Dying.” Journal of Pediatric Nursing 20, no. 5 (October 2005): 311-25. Accessed March 24, 2016.

WHO ARE THE PRIMARY USERS?

L IB

illness has greatly limited their life. Unfortunately, many issues arise when trying to apply these designations in reality, especially when understanding the oftentimes-impossible task of having parents accept their child’s imminent death while the child is still living. Firstly, American’s negative perceptions of each of these terms make them reluctant to utilize them. The demographic of CCC children lies on the margins of society, hardly being discussed in popular, national media. Though this carries over to other countries, the United States is surprisingly uniformed and unprepared for this subgroup considering the fact that the United States is a welldeveloped nation and economic powerhouse.22 American tends to be unusually positive as a whole, preferring to focus on growth and improvements. Though this does not immediately sound like a negative characteristic, this can mean fighting to get better until the last possible moment, even when death is inevitable.23 Dr. Ann Marie Case explains that “the focus in our country at end- of-life seems to be quantity rather than quality”, maintaining the primary goal of extending a life instead of increasing the quality of a short one.24 The result of this, oftentimes unnecessary, fight leads to a tumultuous, stressful, and uncomfortable death for both the patient and the family. With the advancement in technology, it has become possible to extend life much further. Either the physician of the family may be unwilling to accept the death as an outcome for a child who has an uncertain prognosis, sacrificing the comfort and dignity of the child for an elusive and oftentimes nonexistent cure.25 Familiarizing the public with the topic of death and broadening the options that are available to deal with it is absolutely essential. Caretakers should be aware of hospice and palliative care long

before they absolutely have to face it. They should also be given an accurate assessment of how much time the patient actually has and what the most comfortable and affordable option for them would be. Oftentimes this timeline gets skewed by doctors remaining needlessly optimistic, either unaware of the existing hospice care available or because of the responsibility and possible guilt that they feel for the childâ&#x20AC;&#x2122;s decline in health. The United States needs to reach a quality of life that aligns with the standard of living we have come to expect as citizens of one of the most developed countries in the world. To get a better understanding of how beneficial a holistic, integrated care model is when facing the decisions that these families must make, I have included an excerpt that summarizes the journey of two patients that are similar in age and diagnosis.

Jason, the first patient, experiences the symptoms and aftereffects of acute myelogenous leukemia without a comprehensive care team walking him and his family through the process of dealing with such a diagnosis. Their last moments together are riddled with strife and anxiety because of the lack of psychological understanding and care offered. Melinda, though experiencing the same disease and ultimate outcome, had a much more peaceful and resolved death because of the measures her and her family had taken to say goodbye before her end-of-life. Though these are only two examples in a vast sea of situations and diagnoses, they sum up the basic psychological benefits a having a medical team that is familiar with palliative and bereavement methods to help a family make important and informed decisions.

Case Study: Jason Jason, an 11-year-old with acute myelogenous leukemia (AML), is initially treated with chemotherapy and goes into remission. Several months later, the leukemia relapses. At this time, the treating team and family discuss the options for further treatment and the likelihood of survival. Together, they agree on a bone marrow transplant (BMT). Four weeks into the BMT, Jason develops acute graft-versus-host disease, respiratory failure, and gram-negative sepsis. He is transferred to the pediatric intensive care unit (PICU) for aggressive treatment of the sepsis, hemodynamic support, and mechanical ventilation. As his condition worsens, he develops renal failure. His physiological status is continuously monitored and numerous specialists give daily recommendations about the best way to manage each system. After 21 days in the PICU, he remains ventilator dependent, receiving hemodialysis, antibiotics, and other medications. Hemodynamics and ventilatory instability require aggressive sedation and analgesia, and the patient is unable to communicate about his treatment or care. His family maintains at constant vigil at his bedside, rarely taking breaks for sleep or food. They repeatedly ask the team whether there is anything else that can be done for Jason. From the perspective of the oncologist caring for Jason, this is an expected and potentially reversible situation. During a second hemodynamically unstable period 10 days later, Jason arrests and is successfully resuscitated and stabilized although requiring an escalation in life-sustaining therapies with an uncertain impact on his neurological status. Jason’s parents continue to request that all aggressive therapies be undertaken to prolong his life. At each period of deterioration, the oncologist and intensivists continue to offer aggressive therapies without discussing palliative care or hospice. Yet, on rounds, the nurses and resident physicians repeatedly ask, “Why are we doing this?” They are distressed because they believe that the treatments are burdensome and that the child has no chance of recovery. Two months after being transferred to the PICU, Jason experiences another arrest after an acute deterioration and is unsuccessfully resuscitated. He dies in the PICU under the care of the PICU staff and his family is distraught because they had no chance to say goodbye.”1

Cynda Hylton Rushton. “A Framework for Integrated Pediatric Palliative Care: Being with Dying.” Journal of Pediatric Nursing 20, no. 5 (October 2005): 311-25.

Case Study: Melinda Like Jason, 12-year-old Melinda is diagnosed with AML, but the course of her treatment occurs within a holistic, integrated model of care. At the time of her diagnosis, she and her family are introduced to the oncology staff and the palliative care team that includes, among others, a child life specialist, a social worker, and a chaplain. The oncologist describes the usual trajectory for AML and reassures Melinda and her family that the entire team will help manage her pain and symptoms throughout the treatment process, giving her support physically, emotionally, and spiritually. He states that, although many children survive, some do not. He promises to share information and decisions with the family on a regular basis and invites them to ask questions and share concerns with members of the team. Remission is achieved with chemotherapy, and Melinda resumes her usual activities and school between scheduled chemotherapy admissions. Six months into treatment, she relapses, and a BMT is suggested. While discussing the treatment, the oncologist again introduces the palliative care team and their role in her care and invites Melinda and her parents to think about what matters in her life and what their fears are about the future. He advises them to consider whether there may be a point when the burdens of treatment may become too great. Concerned about the possible complications and her quality of life during and after the BMT, Melinda and her parents talk about the BMT and decide to go ahead with the procedure. Plans are made for members of the compassionate care team to follow up with Melinda and her family. Before beginning the transplant, Melinda makes hand molds, a scrapbook, and a video as special mementos for her family. Her parents are referred to a parent support group; community referrals for supportive care are made. Three weeks after the marrow infusion, Melinda develops graft-versushost disease, renal failure, and severe sepsis requiring mechanical ventilation, hemodynamic support, dialysis, sedation, analgesia, and aggressive skin care. Despite aggressive support, her condition continues To deteriorate over the next 3 weeks. The oncologist and intensivist meet frequently with the family to clarify the goals of care. They suggest that resuscitation would be unlikely to change the outcome and might cause additional burdens, even prolong her death. Although distraught at the idea of her impending death, Melinda’s parents decide that resuscitation would not be appropriate. Instead, they ask for the opportunity to have some time with Melinda before she is unable to interact. The treating team weans Melinda from sedation and removes her breathing tube, and the family gathers at Melinda’s bedside. With the support of the child life specialist, chaplain, members of the healthcare team, and palliative care service, the family conducts a celebration of life service. Melinda is able to interact with her family briefly. Four hours later, she dies peacefully with her family at her side.”1

Cynda Hylton Rushton. “A Framework for Integrated Pediatric Palliative Care: Being with Dying.” Journal of Pediatric Nursing 20, no. 5 (October 2005): 311-25.

Maimonides (1135-120 4)

The Problem

â&#x20AC;&#x153; There is a general r u l e , a n d I h av e se e n g r e at physicians acting o n i t, th at th e ph ysi ci a n shoul d NOT treat th e D I SE A SE b u t th e PA T I E N T who is suf f ering f ro m i tâ&#x20AC;?

The Problem

//The Patient There are many types of patients who will be cared for in a pediatric palliative and hospice facility with hundreds of different symptoms and maladies. These can include issues with the muscular, cardiac, epidermal, dental, pulmonary, skeletal, oculous, endocrine, neurological, circulatory, and any other bodily system. With so many health complications, it becomes difficult to tailor a design to a specific disorder. This is why it is imperative to create a flexible architectural response that will be able to accommodate any child who is suffering from mental or physical impairment. While we canâ&#x20AC;&#x2122;t anticipate all the needs that will arise in the future, we can critically study what exists and surmise what is to come. When looking at mobility, it becomes clear that most children are non-ambulatory or highly dependent on a caretaker or mechanical devise for movement. This may include range from the use of a wheelchair to being entirely bed-ridden. As the diagram below suggests, almost every disorder can impede proper skeletal and muscular development. Therefore, ADA accessibility should become the primary path of circulation within the building, rather than a secondary path to those who are completely ambulatory. These passageways should not be a constant reminder to the patients that the cannot move independently, but should instead be the preferable path that is both stimulating and varied. In other

words, a ramp should not simply be the inconvenient alternative to the stairs. Additionally, we must remember that although some patients do come to this facility to spend their end-of-life, which will mean leaving without their child, many others may be coming to take advantage of respite care. While it initially may seem inconsiderate to place these two programs within the same building, â&#x20AC;&#x153;death is a reality that all of these families must face at some pointâ&#x20AC;?.1 It should not, and cannot successfully, be hidden from view. Unwillingness to be transparent with a child about the possibility of death can add much more anxiety, fear and pain. When a child does not know what is happening to them and why their health is deteriorating, they can easily succumb to fear and anger rather than moving to acceptance and enjoying the time they have left. While death should certainly not be hidden, it is also important to provide these families with privacy, dignity and respect as they grieve. To adjust to this need, it would be beneficial to hold wakes, funeral services and other ceremonies related to death in a building that is less exposed, but still completely accessible, to the everyday program. As the condition of these children is fragile, death could 1 - Jean-Marie Mead, interview by author, California, March 11, 2016.

Weakened smooth muscles

Low blood pressure

Unusual bone structures

Early cataracts.

Loss of coordination, trouble walking

Dental abnormalities, single incisor tooth

Immunodeficiency

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

Jaundice

Blocked bile duct

Upset stomach, diarrhea. Brain or nervous system problems, seizures

Vision loss, Unusual Facial Features

Bone deformity

Reproductive system complications

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

come at an unexpected moment. All we can do is prepare for its jarring blow and be ready to pick up the pieces. Whatever the reason a family is utilizing this facility, the fact that the patient is still a child is the most powerful influence on design. Returning a childhood to the patients, along with promoting creativity, happiness, and play, will be paramount in creating an environment that truly reflects its users. The design will allow for children to continue to discover, learn and grow, regardless of what their timeline looks like. One of the biggest sorrows that these patients hold is the knowledge that they will be missing out on growing up. Dealing with this void will require foresight on the side of the architect, ensuring that there is room for living life to its fullest while in this place. Each day is to be carried out as if it is the last, continually holding new discoveries and room to grow. Therefore, architectural features, such as ramps within the building, should become the primary route of circulation rather than a secondary path to those who are completely ambulatory. These passageways

Difficulty breathing

Learning disabilities, epilepsy Muscle cells break down Chromosomal abnormality

Cardiopulmonary

Muscle weakness

Frequent infections

Neuromuscular

Slow growth, restricted movement

C h r o m o s o m a l / M u lt i - o r g a n

Depression/Psychosis

Poor weight gain and growth

Intestinal obstruction

Low blood pressure, diabetes Respiratory failure, Pneumothorax, coughing up blood, damaged airways Increased heart rate, fatigue, weakness

Infectious/Immunologic

Cardiac problems, Enlarged heart

Primary CNS

M e ta b o l i c / b i o c h e m i c a l

Skin rash

Muscle aches, failure to gain weight or grow, difficulty walking Lung infections, tuberculosis, pneumonia Staphylococcus and other skin infections

HIV/AIDS, infectious mononucleosis Bone and joint infections

should not be a constant reminder to the patients that the cannot move independently, but should instead be the preferable path that is both stimulating and varied. In other words, a ramp should not simply be the inconvenient alternative to the stairs. Withing The Lighthouse, this theory is implemented through the use of an airconditioned path that ascends through the garden and diverges to access either the upstairs kitchen or the chapel. This transforms simply traveling through the building into a journey through nature and around treetops. Additionally, we must remember that although some patients do come to this facility to spend their end-of-life, which will mean leaving without their child, many others may be coming to take advantage of respite care. While it initially may seem inconsiderate to place these two programs within the same building, â&#x20AC;&#x153;death is a reality that all of these families must face at some pointâ&#x20AC;?.2 It should 1 - Jean-Marie Mead, interview by author, California, March 11, 2016.

T r a j e c t o r i e s o f P e d i at r i c D y i n g Steady Decline 50

Quality of Life

100

Quality of Life

C h a r a c t e r i s t i c s o f P at i e n t s

Sudden Death

Malignancy

Genetic/ Congenital

50 Neuromuscular

Feeding Tube

100

Quality of Life

Fragile

Fluctuating Decline

None

Tracheostomy

Ventilator

Mean Number of Medications per Day

Mortality at 12 month Follow-up

30.3% 0

Time

Central Line

Time

Quality of Life

Median Time from Consult until Death Time

107 Days

Information Sourced from: “Building the Family Cradle: A Team Approach to Palliative Perinatal Patient Care Conferences.” Pediatric Hospice and Palliative Care Essentials

Information Sourced from: “Developing a Successful Pediatric Palliative Care Program.” Center to Advance Palliative Care.

not, and cannot successfully, be hidden from view. Unwillingness to be transparent with a child about the possibility of death can add much more anxiety, fear and pain. When a child does not know what is happening to them and why their health is deteriorating, they can easily succumb to fear and anger rather than moving to acceptance and enjoying the time they have left. While death should certainly not be hidden, it is also important to provide these families with privacy, dignity and respect as they grieve. To adjust to this need, it would be beneficial to hold wakes, funeral services and other ceremonies related to death in a building that is less exposed, but still completely accessible, to the everyday program. As the condition of these children is fragile, death could come at an unexpected moment. All we can do is prepare for its jarring blow and be ready to pick up the pieces.

Whatever the reason a family is utilizing this facility, the fact that the patient is still a child is the most powerful influence on design. Returning a childhood to the patients, along with promoting creativity, happiness, and play, will be paramount in creating an environment that truly reflects its users. The design will allow for children to continue to discover, learn and grow, regardless of what their timeline looks like. One of the biggest sorrows that these patients hold is the knowledge that they will be missing out on growing up. Dealing with this void will require foresight on the side of the architect, ensuring that there is room for living life to its fullest while in this place. Each day is to be carried out as if it is the last, continually holding new discoveries and room to grow.

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 ? Does the primary caretaker need a break?

Are you making frequent visits to the hospital?

Diagnosis

Does the patient have chronic pain?

YES

Less than 6 months to live?

Palliative & Respite Care

YES

Hospice Care

NO YES

Is the primary caretaker capable of administering care?

Can you afford home care? Is it available to you?

YES

Does the patient need assistance in activities of daily living? YES Does the patient have less than 6 months to live?

YES

Does the primary caretaker have time to administer 24/7 care?

YES

Is the primary caretaker capable of administering care?

Are you making frequent visits to the hospital?

Palliative Home Care

YES

Long-term Care Facility

YES

Do you have other time commitments like work, a husband or other children?

Yes

Is the patient lonely? YES No

YES

Long-term Care Facility (Palliative & Respite Care) Palliative Home Care Long-term Care Facility (Palliative & Respite Care)

YES No

Does the primary caretaker need a break?

Does the patient dislike the hospital atmosphere?

Home Care

YES

Long-term Care Facility (Palliative & Respite Care)

Is this making the patient or family uncomfortable?

YES No

Home Care Long-term Care Facility (Respite Care)

YES

Long-term Care Facility (Palliative & Respite Care)

No Long-term Care Facility (Hospice Care)

Would your child benefit from a supportive community of similar patients? Can you afford 24/7 care at a hospital?

Can you afford home care? Is it available to you?

Palliative & Respite Care

Long-term Care Facility (Respite Care)

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? Long-term Care Facility (Palliative & Respite Care)

YES

Long-term Care Facility (Respite Care) Long-term Care Facility (Palliative & Respite Care)

Palliative Home Care

YES

Long-term Care Facility

//The Precedent To understand what must be implemented to satisfy the needs of complex care children in the United States, we must first understand the current system of care. This includes seeing the United States pediatric palliative and hospice structure from a worldview perspective, identifying the downfalls of the current model and understanding the potential that a successfully implemented system holds. Currently, “there is a dearth of resources available to assist families with the care of medically fragile children”. This issue is only going to be exacerbated through technological advancement which is allowing children to survive through traumatic injury or premature birth, among many other potentially injurious events. These children may survive, but will spend the rest of their lives with “serious health and neurological impairments”. Consequentially, there must be a growth in facilities that can relieve the physical and psychological distress of both the child and their family.1 Looking at the number of pediatric palliative and hospice facilities in North America and Europe, the discrepancy in number of facilities becomes immediately apparent. Though over 49 pediatric palliative and hospice facilities exist throughout the United Kingdom alone, only two are in operation within the United States.2 This does 1- Katherine Smith, “Pediatric skilled nursing facilities in the United States: locations, descriptions, and networks” (1992). Scholar. Archive. Paper 1744. 2 - Susan Agrawal. “Palliative Care and Respite Houses: A Desperate Need in

not include institutionalized skilled nursing facilities or hospitals, which are each accompanied with a myriad of issues when used as the primary source of a child’s respite, palliative or hospice care. Some of these issues include the fact that an overnight stay in a hospital bed can run upwards of $1000, most children do not enjoy spending time in a sterile and uninspiring hospital environment and institutionalized nursing facilities oftentimes require sacrificing custody of the child to obtain governmental support for long-term care. The list of issues that arise from trying to fulfill pediatric palliative and hospice care in an institutional facility or hospital is lengthy, none of which are ideal scenarios for either the child or family who may already be overwhelmed by the complexities of care and attention that the patient requires. No matter how excellent each of these institutions may be, they are simply not designed to adequately deal with these children for an extended period of time, let alone to enhance the experience of the patient and their family. In the United Kingdom, however, tremendous attempts have been made to remedy this situation. While these homes have been very successful in terms of usage and support, with 30% of families choosing to spend end-of-life in the facility, they still lack an architectural response.3 Many of these ‘homes’, as they call them, the United States.” Complex Child E-Magazine, 2014. 3 - “A Report on Location of Death in Paediatric Palliative Care between Home,

HOW DOES THE U.S. COMPARE? CANUCK PLACE CHILDREN’S HOSPICE Ladybug House

Crescent Cove (In Development)

(In Development)

Sarah House GEORGE MARK CHILDREN’S HOUSE

(In Development)

Connor’s House

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

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

(In Development)

R YA N H O U S E

Dr. Bob’s Place ( 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 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

are free of charge, depending on over 80% of their expenditures on philanthropy alone. Several celebrities, including Daniel Craig and Kate Middleton among many others, endorse these facilities through widely publicized visits and speeches as well as televised commercials.4,5 Several YouTube videos exist, oftentimes starring one of the aforementioned public figures, to educate United Kingdom residents on the great need for their support. This exposure greatly increases the general population’s knowledge, increasing the amount of monetary support and volunteerism. You will find no such videos being widely viewed in the United States. As for the buildings themselves, they are generally either existing residences that have been refurbished to administer care to CCC patients or are newly built to emulate a freestanding residence. Hospice and Hospital.” Palliative Medicine 22, no. 7 (2008): 831-34. 4 - BBCCiN. “Daniel Craig Talks about Clare House, a Charity Supported by BBC Children in Need.” YouTube. 2012. 5 - Jasper Copping. “Duchess of Cambridge Speaks of Hospice ‘lifeline’ in First Video Message.” The Telegraph. April 28, 2013.

Consistently, the program and appearance resemble that of a traditional ‘home’, in which there are 8 to 10 bedrooms, a kitchen, a dining room, a living room, a play room, etc. While creating a “homey” environment comes from altruistic motives - perhaps to distract the children and family from the fact that they are, in fact, not home - it does not cater to the needs of the users as well as it could without this traditional program and superficial appearance. I argue that the necessities of this unique program could be treated as the novel and innovative typology that it is. Rather than simply emulating a home - to overcompensate for the fact that it is not one or as an attempt to avoid recalling the flavor of an institutional nursing home - I argue that this place should be recognizable to the public for what it is rather than pretending to be what it is not. This facility is a place that tends to children. Regardless of their sickness or lifespan, they are kids who bring as much creativity and wonder to the table as a child who is healthy. Properly integrated into a community, these facilities can make a monumental impact on the families that they serve. On of

WHERE DO CHILDREN SPEND THEIR END-of-life? HOME

HOSPICE

HOSPITAL

When all locations are made relatively accessible for a patient to die, each is chosen roughly 1/3 of the time.

When pediatric palliative / hospice facilities are not easily accessible

( Typical in the UN ITE D STATES)

When pediatric palliative / hospice facilities made accessible

( Typ ic al in th e Un ite d Kin gd om)

When extremely well-integrated

into the community, like BC’s Canuck Place, most children and their families choose hospice.

these facilities is Canuck Place Children’s Hospice located British Columbia. As North America’s first freestanding children’s hospice, Canuck Place boasts locations in both Vancouver and Abbotsford. This Canadian hospice cares for children whose ages ranges from 0-19, with over 40% of the children being 12-19 years old. Due to the free respite and hospice services made possible by donations, in addition to the “mobile clinic” services, extensive bereavement support and community activism, over 60% of families choose to spend their child’s end-of-life in one of the Canuck Place facilities.6 This illustrates how important it is to provide an alternative to the hospital, home or nursing home to families and children dealing with life-limiting or life-threatening conditions. Families choosing to spend end-of-life in the facility, they still lack an architectural response.7 Many of these ‘homes’, as they call them, are free of charge, depending

on over 80% of their expenditures on philanthropy alone. Several celebrities, including Daniel Craig and Kate Middleton among many others, endorse these facilities through widely publicized visits and speeches as well as televised commercials.8,9 Several YouTube videos exist, oftentimes starring one of the aforementioned public figures, to educate United Kingdom residents on the great need for their support. This exposure greatly increases the general population’s knowledge, increasing the amount of monetary support and volunteerism. You will find no such videos being widely viewed in the United States. As for the buildings themselves, they are generally either existing residences that have been refurbished to administer care to CCC patients or are newly built to emulate a freestanding residence. Consistently, the program and appearance resemble that of a traditional ‘home’, in which there are 8 to 10

6 - “A Report on Location of Death in Paediatric Palliative Care between Home, Hospice and Hospital.” Palliative Medicine 22, no. 7 (2008): 831-34. 3 - “A Report on Location of Death in Paediatric Palliative Care between Home, Hospice and Hospital.” Palliative Medicine 22, no. 7 (2008): 831-34.

8 - BBCCiN. “Daniel Craig Talks about Clare House, a Charity Supported by BBC Children in Need.” YouTube. 2012. 5 - Jasper Copping. “Duchess of Cambridge Speaks of Hospice ‘lifeline’ in First Video Message.” The Telegraph. April 28, 2013.

bedrooms, a kitchen, a dining room, a living room, a play room, etc. While creating a “homey” environment comes from altruistic motives - perhaps to distract the children and family from the fact that they are, in fact, not home - it does not cater to the needs of the users as well as it could without this traditional program and superficial appearance. I argue that the necessities of this unique program could be treated as the novel and innovative typology that it is. Rather than simply emulating a home - to overcompensate for the fact that it is not one or as an attempt to avoid recalling the flavor of an institutional nursing home - I argue that this place should be recognizable to the public for what it is rather than pretending to be what it is not. This facility is a place that tends to children. Regardless of their sickness or lifespan, they are kids who bring as much creativity and wonder to the table as a child who is healthy. Properly integrated into a community, these facilities can make a monumental impact on the families that they serve. On of these facilities is Canuck Place Children’s Hospice located British Columbia. As North America’s first freestanding children’s hospice, Canuck Place boasts locations in both Vancouver and Abbotsford. This Canadian hospice cares for children whose ages ranges from 0-19, with over 40% of the children being 12-19 years old. Due to the free respite and hospice services made possible by donations, in addition to the “mobile clinic” services, extensive bereavement support and community activism, over 60% of families choose to spend their child’s end-of-life in one of the Canuck Place facilities.10 This illustrates how important it is to provide an alternative to the hospital, home or nursing home to families and children dealing with life-limiting or life-threatening conditions.

6 - “A Report on Location of Death in Paediatric Palliative Care between Home, Hospice and Hospital.” Palliative Medicine 22, no. 7 (2008): 831-34.

Isolation Anxiety Fear Loneliness Sterile Boring Foreign

peaceful familiar imaginative supportive Natural playful familiar

HOW DO WE BEGIN TO MAKE ALL THIS DATA INTO AN ARCHITECTURAL SOLUTION?

“ Today is her f uture. We don’t think about th e pa st. we don’t think about th e fu tu r e . What is she doing today? ” Patty geisinger Austin, TX

//THE NURSES’ STATION The registered nurse, or RN, is central to any pediatric palliative and hospice facility, if not in healthcare worldwide.1 Nurses are the ones “of all Interdisciplinary healthcare team members, who are in most frequent and intimate contact with patients”.2 They are the patient’s primary medical caretaker, a support system for the parents and siblings, and an intermediary between doctor and family. The nurse plays many different roles and spend the majority of their time within the building, making them an extremely influential user. This prominence in the facility indicates a need to place the Nurses’ Station in a central location within the facility. Along with being accessible both visually, auditorially, and physically to the patients’ rooms, the nurses must also be accessible every other part of the building in case a patient suddenly needs their assistance 1 - Anne M. Parkinson, and Rhian Parker. “Addressing Chronic and Complex Conditions: What Evidence Is There regarding the Role Primary Healthcare Nurses Can Play?” Australian Health Review 37, no. 5 (September 13, 2013): 588-93.. 2 - Cynda Hylton Rushton. “A Framework for Integrated Pediatric Palliative Care: Being with Dying.” Journal of Pediatric Nursing 20, no. 5 (October 2005): 311-25. Accessed March 24, 2016.

elsewhere. In George Mark Children’s House in San Leandro, CA the Nurses’ Station is located far from the entrance, though directly between two corridors of rooms. This placement gives the nurses optimal travel time, though poor visualization. Registered Nurse Jean-Marie Mead, the day shift Patient Care Coordinator/Manager

George Mark Children’s House Remick Associates San Leandro, CA

Ryan House Orcutt l Winslow Phoenix, Az

George Mark Children’s House Remick Associates San Leandro, CA. 2016

and the Nursing Education Liaison at George Mark, explained that though the station was close to the rooms, is was difficult to know if someone needed their assistance from the hallway alone. She said that “it would be nice to have surveillance cameras” to see down the corridors more easily while still maintaining adequate privacy for the patient.3 It has also been proven that “patients, parents, and caregivers are more likely to be forthcoming to medical staff when they know others cannot overhear them”, underlining the importance of maintaining privacy while still allowing for surveillance.4 Similarly, the Nurses’ Station in Ryan House is placed in a central location, though does not have direct visibility of the majority of the rooms. Upon visiting the two buildings and observing activity levels throughout the day, a major organizational flaw became apparent. Though positioning the Nurses’ Station in a hallway, which both building have done, promotes efficiency with direct access to the primary circulation path, it does not allow the desk to become a

gathering space. In both facilities, however, the station functioned as a primary node of activity, where nurses, volunteers, visitors, patients, family and administration congregated. Due to the limited space surrounding the desk, chairs were brought in from other spaces. The RNs at George Mark Children’s House critiqued both the limited space within the station and the inability to access the outdoors from the hallway. In the pictures below, the nurses, a therapy dog trainer, and a patient sit around the Nurses’ Station eating lunch, visiting, and providing care. The Nurses’ Station was a ‘Home Base’ of sorts for the majority of users in the facility. While the traditional residential gathering spaces had been given prominence in the facility, like the Great Room and the Dining Room, the Nurses’ Station lacked an identity or distinction. Instead, it appropriated the circulation path thus decreasing efficiency for the path itself. Using these observations, it becomes clear that it is advantageous to centralize the Nurses’ Station. In this new design, the Nurses’ Station lies between the two main circulation paths, visible from every entrance to the building. This allows for the medical staff welcome regular visitors with a familiar face or to respond quickly to any part of the building if they are needed. Rather than being placed between two long corridors, a triangle

3 - Jean-Marie Mead, interview by author, California, March 11, 2016. 4 - Rohde, Jane. “6 Checkpoints When Designing a Pediatric Healthcare Unit.” Building Design & Construction, November 14. Accessed February 22, 2016. ASU Libraries.

12 11

1 2

18 6

24 25

21 27

3 26

5 4

FLOOR 1 1/16” : 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

FLOOR 2 1/16” : 1’

1. Patio 2. Event Space / Multi-Use Gathering 3. Kitchen / Dining 4. Chapel 5. Bereavement

View from the Nurses’ Station to the 8 Patient Rooms

courtyard is placed between the Nurses’ Station and the patients rooms. This allows for a direct visual connection while maintaining privacy for the patient. Due to the fragile state of these children, they oftentimes lack the independence that would be normal of a healthy child their age.5 Any sense of independence or privacy is a welcome commodity - especially for teenagers who are aware of their physical disability. With this implementation, the nurses are able to recognize when a patient needs assistance directly from the nurses station. As well as being located at the core of the program, the Nurses’ Station divides the two primary corridors in the building. These paths of circulation, leading from the North Entrance to either The Lighthouse or the Drop-Off Court, further divide the program within the building. The more privatized spaces and living quarters for the patients, family and medical staff are located to the east of 5 - Canuck Place Children’s Hospice, and British Columbia’s Children’s Hospital. Pediatric Palliative Care Family Education. 2004.

the set Nurses’ Station and primary circulation paths. The public, play and administrative programs, however, are on the first and second floor to the west of the Nurses’ Station. This organizational strategy emphasizes the importance of public and private, though does not give a preference to either while allowing free movement between the two halves.

North Entrance - Looking towards Nursesâ&#x20AC;&#x2122; Station

//The Courtyard It has been proven repeatedly that nature has a profound effect on human psychology.1,2 Biophilia, which “implies affection for plants or other living things”, in the built environment can be incredibly beneficial for reducing stress, increasing attention, and reducing burnout rates among many other positive results.3 Utilizing Biophilic Design Matrices (BDM), there are several methods, with as many benefits, to integrating nature into a pediatric setting. When designing a facility which will essentially become a second home to many of its users, whether it be for the patient or for the staff, the mental wellbeing and satisfaction is one of the utmost responsibilities that a designer has. Using the landscape to manipulate and protect the structure will have several impacts on the facilities inhabitants. In the current architectural pediatric palliative and hospice care model, there is an effort to integrate natural elements into the design of the building. In George Mark Children’s House, the 1 - Beth McGee, MS, and Anna Marshall-Baker, PhD. “Loving Nature From the Inside Out: A Biophilia Matrix Identification Strategy for Designers.” Health Environments Research & Design Journal 8, no. 2 (2015): 115-30. 2 - Milena Heinsch. “Getting down to Earth: Finding a Place for Nature in Social Work Practice.” International Journal of Social Welfare 21, no. 3 (September 25, 2011): 309-18. 3 - Bjørn Grinde, and Grete Grindal Patil. “Biophilia: Does Visual Contact with Nature Impact on Health and Well-Being?” International Journal of Environmental Research and Public Health IJERPH 6, no. 9 (2009): 2332-343.

building is surrounded by a lush, green landscape. One the interior, however, these attempts are limited to small windows throughout the building that do not allow for natural daylighting. Both buildings are characterized by wings of patient rooms that protrude from the body of the building to have windows in each patient room on either side of a wing. This leaves long expanses of straight hallways that are windowless and generally monotonous, generating anxiety in children who can’t put a sense of scale to the length of the hallway.

Ryan House Orcutt l Winslow Phoenix, Az. 2015.

George Mark Children’s House Remick Associates. San Leandro, CA. 2016

Ryan House Orcutt l Winslow Phoenix, Az. 2015.

The Lighthouse combats this issue by inserting a courtyard in the hallway, thus splitting the pairs of rooms apart, the length of the hallway diminishes altogether. Children who spend most of their time indoors, like those in medical facilities, oftentimes do not get adequate amounts of natural light. This can upset their sleep cycle, which in many cases is already disturbed due to the sick child’s fear of sleeping.4 Daylighting alone has been shown to decrease stress, increase job satisfaction, reduce depression, and aid circadian rhythms”.5 By introducing natural light through a series of courtyards that insert themselves into the building, The Lighthouse allows the medically fragile patients who may be unable to go outside due to a compromised immune system or mobility limitations to experience sunlight throughout the building. Additionally, if a patient should not want sunlight at a particular part of day, each of the patient rooms is equipped with operable folding screens to manage the amount of light that is desired. In order to obtain only avoid the harshest light throughout the day, the largest expanses of glazing face away from the south and west or protected by overhangs and vegetation. The 4 - Canuck Place Children’s Hospice, and British Columbia’s Children’s Hospital. Pediatric Palliative Care Family Education. 2004. 5 - “Loving Nature From the Inside Out: A Biophilia Matrix Identification Strategy for Designers.” Health Environments Research & Design Journal

CONF. ROOM

ABSTRACTION AND ABSTRACT EXPRESSIONISM

BAY AREA FIGURATIVE

POLITICS AND POP ART

MEMBERSHIP INFO. CENTER

THE BODY IN CONTEMPORARY ART

ROTATING WORKS ON PAPER

REINVENTING MODERNISM

ADMINISTRATIVE OFFICE AREAS

CONF. ROOM

AMERICAN SCENE / SOCIAL REALISM

RECEPTION CONF. ROOM

TOWER LOBBY

INTERSTITIAL GALLERY

ART OF AUSTRALIA

ART OF AMERICAS

THE ART OF CRAFT ART OF AMERICAS

De Young Museum. Herzog & de Meuron and Fong & Chan Architects. San Francisco. 2016.

“positive distraction” of daylighting is an ever-changing mural that can add interest to the operation of the building.6 Another biophilic strategy employed in The Lighthouse is the place-based dimension, which “is a connection to the local natural identity” in which there is a connection to the place in which the facility is located.7 Due to the fact that the site where The Lighthouse is located used to be part of an airport campus, it has lost the rich natural identity that it once had as a piece of Austin, TX land. To restore the topographical vegetative variety, the building is encapsulated in retaining walls that insulate the building against the surrounding urban fabric while allowing the ground to ebb and fall around the facility. This undulation alternates what is visible to the patient, inspiring imagination and curiosity. Much like the Japanese Tea Garden that sits in the middle of busy San Fransisco, the peaceful courtyards within these retaining walls would allow for internal reflection and security. To honor the overgrown foliage of the Hill Country as the place-based strategy, local plants and trees will fill the interior of the retaining wall, giving the patients a way to be immersed in nature without having to leave the facility. To provide further connection to the city, the second floor - accessible by ramp, stairs, or elevator - provides expansive views of Dell Children’s Hospital and the surrounding area. Much like the De Young Museum in San Francisco, the courtyards push their way through the building, influencing the form and environment on the structure itself. From every part of the building, nature is made visible. Introducing nature within the facility is not a new concept for medical environments. Some of the first hospitals in Western Europe were monastic communities in which the garden was regarded as a necessary element within a rejuvenating space.8 In these circumstances, the building was

MAIN COURT

ART OF AMERICAS

MAIN LOBBY TICKETS/INFORMATION ART OF AMERICAS

ENTRY COURT

CAFE

FAMILY ROOM

CAFE KITCHEN

EVENTS KITCHEN

CONCOURSE LEVEL

AUDITORIUM

MUSEUM STORE

Public Areas

EDUCATION GALLERY

6 - G. Campagnol, and M. M. Shepley. “Positive Distraction and the Rehabilitation Hospitals of Joao Filgueiras Lima.” HERD: Health Environments Research & Design Journal 8, no. 1 (2014): 199-227. 7 - “Loving Nature From the Inside Out: A Biophilia Matrix Identification Strategy for Designers.” Health Environments Research & Design Journal 8 - “Biophilia: Does Visual Contact with Nature Impact on Health and Well-Being?” International Journal of Environmental Research and Public Health

Japanese Tea Garden. Makoto Hagiwara San Francisco. 2016.

wrapped around a singular courtyard that was thought to be therapeutic and medicinal. Though some children won’t be able to physically experience the garden due to their ailments, it has been shown that simply making vegetation visible can increase pain tolerance with patients reporting greater pain relief and decreased anxiety.9,10 With each courtyard that is inserted into the building, the form shifts to allow for ample greenspace. Rather than entering a traditional medical facility like the ones that these patients are accustomed to, they enter a garden-like space that is filled with natural light and vegetation. To understand the context in which the The Lighthouse resides, the surrounding area and community must be taken into consideration. The Lighthouse was designed for a vacant lot parallel to Dell Children’s Hospital in Austin, Texas. As a newly developed area, there is amble opportunity to connect to the community through the Mueller Neighborhood to south and to the vast array of medical IJERPH 6, no. 9 (2009): 2332-343. 9 - Milena Heinsch. “Getting down to Earth: Finding a Place for Nature in Social Work Practice.” International Journal of Social Welfare 21, no. 3 (September 25, 2011): 309-18. 10 - S. A. Sherman-Bien, V. L. Malcarne, S. Roesch, J. W. Varni, and E. R. Katz. “Quantifying the Relationship among Hospital Design, Satisfaction, and Psychosocial Functioning in a Pediatric Hematology Oncology Inpatient Unit.” HERD: Health Environments Research & Design Journal 4, no. 4 (2011): 34-59.

George Mark Children’s House site plan + entrance Remick Associates. San Leandro, CA. 2004

Ryan House entrance Remick Associates. San Leandro, CA. 2004

practices to the north. As several families can attest, having child specialists nearby can lighten weekly travel time considerably.11 In addition to the convenience of living close to a world-renowned children’s hospital, the facility will benefit the +6,000 SSI eligible children in Central Texas, in which there is no freestanding or noninstitutional pediatric palliative facility that can accommodate the needs of a child with a complex care condition life-limiting disease. Dell Children’s Hospital also employs a comprehensive care team of individuals trained in pediatric palliative and hospice care. This includes, but is not limited to, an obstetrician, a perinatologist, a neonatologist, pediatric palliative medicine specialists, pediatric and hospice specialists, maternity/NICU leadership, social work, Child Life specialists, a chaplain, case managers and registered nurses.12 This extensive team ensures that through every step of the palliative or hospice process, whether it be prenatal or as a young adult, the patient and family are given ample information, options, and support from medical professionals. Though it may seem customary to have a team that is familiar with pediatric palliative and hospice care, many pediatric physicians are not properly educated or comfortable with palliative or hospice options. This can cause years of anguish for a child and his or her family, culminating in a turbulent, stressful and painful death.13 Having access to a team who is knowledgeable and confident enough to provide comfort to a patient allows for a peaceful and dignified end-of-life process. Locating the facility across the street from the hospital campus is not only advantageous in term of time saved and accessibility, but necessary to minimize excess turbulence and stressors for the patient. This close proximety also reduces the time that physicians 11 - Robinlynn8. “Owen’s Hospice Story- and His Momma’s Thoughts on the Subject.” Wordpress.com (blog), September 11, 2015. Accessed January 4, 2016. https://owenshospicestory.wordpress.com. 12 - “Find a Doctor or Medical Staff - Dell Children’s Medical Center of Central Texas.” Find a Doctor or Medical Staff - Dell Children’s Medical Center of Central Texas. 2016. Accessed April 24, 2016. 13 - Cynda Hylton Rushton. “A Framework for Integrated Pediatric Palliative Care: Being with Dying.” Journal of Pediatric Nursing 20, no. 5 (October 2005): 311-25. Accessed March 24, 2016.

L o c at i o n c h a r a c t e r i s t i c s

City

Austin, TX Neighborhood

Mueller SSI eligible children in the surrounding 6 counties

~6,000 Direct relationship with

Dell Childrenâ&#x20AC;&#x2122;s Hospital Access to wide variety of

child specialists and emergency services spend accessing the facility, which can be several hours a day.14 The site itself is 91,000 square feet and borders a parking lot to the southeast which can be shared with the facility. Dell Childrenâ&#x20AC;&#x2122;s lies directly to the north across the Philomena Street, presenting the designer with opportunities for visual connections from the facility to the hospital. To the south of The Lighthouse is the recently-constructed Mueller neighborhood which employs mixture or commercial and residential zoning in the New Urbanist style. This allows ample opportunity to connect with the community outside of the medial community for support through philanthropic 14 - Ann Marie Case, email to author, March 25, 2015 (7:01 a.m. CT).

support as well as exposure to pediatric palliative and hospice care itself. While both George Mark Children’s House and Ryan House have the advantage of being located on hospital campuses, they are highly inaccessible or unsightly to the surrounding community. George Mark Children’s House is located in San Leandro, CA. Though secluded on a lush hilltop, the facility is only accessible by driving through the loading dock of several industrial and commercial buildings. It is wholly unaccessible hardly noticed from the surrounding community. Once inside the gated property, however, the site is green and quiet, albeit far from the beaten path. This affects cell phone signals, ambulance accessibility and convenience for patients and their families. Ryan House, on the other hand, is located in the hearth of Downtown Phoenix. Even with the central location, this facility goes widely unnoticed and unrecognizable to the general public. Because of its urban location near the main hospital, Ryan House has limited space on which to put the prescribed pediatric palliative and hospice program. This leaves hardly any space for public reception or biophilic methods. As a result, the facade is unwelcoming and generic. Though there are is a central play court within the building, it is entirely concealed by an impermeable wall surrounding the entire property. This gives the outside community no hint as to the significance or function of the facility. While seclusion certainly is appropriate aspect to include in the pediatric palliative and hospice program, it is important to avoid isolating the children and families that are experiencing this journey. Exposing the community, as mentioned in a previous section, can be helpful for a number of reasons including donations,

W h y D e l l C h i l d r e n ’ s H o s p i ta l? Only dedicated freestanding pediatric facility in

Central Texas Serves

46-counTy Area Total Beds

250 PICU Beds

24 Level 4 NICU Beds

30 Level 1

Trauma

View from the vacant site to the northeast to Dell Children’s Hospital across Philomena St.

volunteerism, support groups, and educational opportunities. In The Lighthouse itself, opportunities for community involvement architecturally manifest themselves in several ways. With entrances to all sides of the block, the facility is accessible whether one is approaching from the Mueller neighborhood, the bordering parking lot, or Dell Childrenâ&#x20AC;&#x2122;s Hospital. Greenspace surrounds the entire building, providing shade and respite to those walking by. Most importantly, 4,500 sq. ft. of space are devoted to an event space and patio located on the second floor of the building. With sweeping northern views to both Dell Childrenâ&#x20AC;&#x2122;s Hospital and the surrounding community, the space provides ample room to host philanthropic or private events to help fund the facility.

South Drop-off Court

//The Playground Another form of “positive distraction” taking place in The Lighthouse is play through an imaginative theme, undulating shapes, and child-scale fixtures.1 Play is essential for the psychosomatic and communicative development of a child, let alone their creative and energetic outlet.2 For a medical facility that attends to sick children, it is especially important to interlock play with the essence of the design. Usually hospitalization “constitutes an unpleasant experience both for adults and mostly for children, who suddenly have to leave the familiar place of their home and the persons who are important for them, and stop their favorite activities, including play.”3 This does not have to be the case. By integrating an imaginative and adventurous spirit into the design itself, play becomes in integral part of how the facility functions. For instance, the Taka Tuka Land, a kindergarten in Germany, the facade and interior become a playground where children are free to climb and play. The imagination, which is so free and uncontrolled in children, is enlivened by the versatility of their 1 - Jane Rohde. “6 Checkpoints When Designing a Pediatric Healthcare Unit.” Building Design & Construction, November 14. Accessed February 22, 2016. ASU Libraries. 2,3 - Konstantinos Koukourikos, Laila Tzeha, Parthenopi Pantelidou, and Areti Tsaloglidou. “The Importance of Play During Hospitalization of Children.” Mater Sociomed Materia Socio Medica 27, no. 6 (December 2015): 438-41.

Taka Tuka Land Baupiloten, 2007. Berlin, Germany. ArchDaily

environment. In a medical environment, play can be a channel in which the child can communicate to their caretaker or express themselves when they don’t know how. It can also be used to calm the patient when they are experiencing stress that is intensified by their illness, whether it be because of fear of examinations, confusion about their location or people around them, physical pain and separation from their family.4 Though play is oftentimes overlooked due to the primary position of medical attention, it becomes very important when a 4 - “The Importance of Play During Hospitalization of Children.” Mater Sociomed Materia Socio Medica 27, no. 6 (December 2015): 438-41.

Ryan House Orcutt l Winslow Phoenix, Az. 2015

CT Ronald McDonald House. Don Eckols, AIA. Austin, TX. 2016.

George Mark Children’s House. Remick Associates. San Leandro, CA. 2016.

of glazing to promote visual connections between the patients and staff. Similarly, the “game room” which is located in the Family Wing, has more teenage-specific games that appeal to both parents and siblings. This room has a visual connection to both the street and the Family Room so that they can be properly monitored while parents discuss the patient out of earshot. child is frequently or consistently visiting a medical institution. Another form of play that is integral to the entirety of The Ryan House and George Mark Children’s House use a series Lighthouse’s design, primarily because of its departure from an of themed rooms to allow the patients to play. Each facility has a institutional appearance, is the theme. Themes, as a “positive variety of rooms including an art room, music room, sensory room, distraction” technique, have a favorable impact on the child’s main play room and digital lab. Though these rooms serve their psychological state.6 The subtle nautical theme of The Lighthouse purpose, they do not allow for a collaboration or connection between allows the child to enter an underwater adventure rather than one rooms, isolating each activity. Jean-Marie Mead, a registered that is reminiscent of a sterile, scary or unfriendly medical facility. nurse at George Mark, explained that some of the rooms double The oscillating retaining wall structure that surrounds the building as homework rooms where siblings can finish their schoolwork.5 In gives the impression of rolling waves spilling over with greenery. the Central Texas Ronald McDonald House in Austin, TX, play is The Play Ship sitting at the north entrance acts as a recognizable extended to the non-pediatric visitors with a pool table. Play is an monument that can bring familiarity, rather than anxiety, to a child’s effective distraction mechanism that can illicit joy intergenerationally, mind when they enter the care facility. As the patient enters the thus reducing stress and promoting well-being. building, child-scale luminescent bubbles protrude from the wall, In The Lighthouse, the various play-specific rooms surround inviting the child to sit inside or roll underneath. Approaching the a larger flexible play space. The the rooms can be auditorially disconnected if the user chooses, each wall is separated by a strip 5 - Jean-Marie Mead, interview by author, California, March 11, 2016.

6 - Jane Rohde. “6 Checkpoints When Designing a Pediatric Healthcare Unit.” Building Design & Construction, November 14. Accessed February 22, 2016. ASU Libraries.

Nurse’s Station, which is central to the two primary circulation paths that divide the building in half, light spills in from the many skylights that follow the circulation paths floating above the first floor. The visibility of the circulation paths through glazing and minimal visual impediments allows for optimal orientation and “wayfinding” while moving through the building. This is important to minimize the patient’s confusion and fear of the unknown.7 Continuing through the building, the patient can follow a luminescent “wave” that floats overhead - attached the 2nd floor walkways. These “waves” provide a clearly illuminated walkway throughout the day and night that leads directly from the Nurses’ Station to the patient’s room. No matter the time of day, the circulation path will be recognizable with the soft illumination of these blue “waves”. Within the patient room itself, an opaque laminate panel divides the stairway from the bedroom, still allowing the patient to see who is coming or going from the room. While easy to clean and shatter-proof, the partition contains an slightly opaque graphic of an underwater scene, such as a coral reef with fishes or simply waves. This subtle, yet playful detail adds to the theme of the building. Furthermore, to address the fear that some children face as they try to sleep, each room is outfitted with small LED lights embedded into the ceiling and a series of thin pin-lights. Though hardly noticeable during the day, at night the LED’s twinkle softly in the background while the more prominent pin lights form a star formation unique to the room, such as the Big Dipper or Orion’s Belt. This detail provides a naming system for each of the rooms as well as a unique detail that the patient can claim as their own. Using a dimmer, it can be used as a night-light that helps the patient to become more comfortable with sleeping through the night. Returning to The Dock, or the Nurses’ Station, the patient can continue along the circulation path that leads up a ramp to The Lighthouse itself.

7 - Heidi Salonen, Marjaana Lahtinen, Sanna Lappalainen, Nina Nevala, Luke D. Knibbs, Lidia Morawska, and Kari Reijula. “Design Approaches for Promoting Beneficial Indoor Environments in Healthcare Facilities: A Review.” Intelligent Buildings International 5, no. 1 (2013): 26-50.

Treasure Trove Court - Outside Conference Room

//The Lighthouse Death is an inevitable path of life that can come much too early in a childâ&#x20AC;&#x2122;s life. This is a reality for the children staying in The Lighthouse. While there are many different levels of acceptance and grief for each individual, the facility needs to be flexible and respectful to each family and child. Though many children come to the facility to utilize the respite services, leaving within a few days to a few months, The Lighthouse will be the last destination for some. These two programs - respite and end-of-life - are interwoven and equally significant. However, there should be a clear differentiation between a place where the living are carrying on with their lives and the place where friends and family are mourning a loved one and

George Mark Childrenâ&#x20AC;&#x2122;s House. Remick Associates. San Leandro, CA. 2016.

visiting them for the last time. In George Mark Childrenâ&#x20AC;&#x2122;s House, this bereavement space is located in succession to the other patient rooms. There is no defining characteristic in this room to suggest its purpose or significance except for a single crib located in a small room that is connected to a sitting room. This room placement in the larger program does not give adequate privacy or reverence to the people who are mourning the loss of their loved one. In Ryan House, the bereavement room also is located in the very back of the building after a succession of rooms, but given more space, auditorial and visual privacy and a private green space. Both of these programs,

Ryan House. Orcutt l Winslow. Phoenix, Az. 2015.

George Mark Children’s House. Remick Associates. San Leandro, CA. 2016.

perhaps unintentionally, hide the end-of-life aspect to the facility from the public, though do not provide adequate privacy or reverence for the deceased and those who mourn them. In the design of The Lighthouse, the intent is to never conceal the reality of death from those uninvolved with the facility. While maintaining a respectful level of privacy, the ‘Lighthouse’ rises above the street level to provide a nondenominational space to worship, mourn, reflect or be at peace. Visible from the front entrance and Nurses’ Station, a large stained glass window floods the space and hallway with light and color, beckoning those in the main structure to come inside. Rising six feet from the main building’s floor level, the visitor is lifted into this enlightened space for whatever reason that they require. Much like the chapel at George Mark Children’s House, one must pass through nature to enter into the space. This biophilic tactic calms the individual and prepares them psychologically to enter the space. Once inside, the simple, yet brightly-lit space casts a warm, diffused light on its inhabitants. Whether the visitor is religious, spiritual or agnostic, there is a phenomenological shift in the interactions and emotions within the chapel. The bereavement room merges with the chapel, sharing in its reverential environment. A bed sits in front of a simple wall surrounded by glazing. Here, the deceased is surrounded by a frame of nature and light. Facing the Reflection Garden, rich greenery and color add a biophilic-induced peacefulness. Leaving the chapel and

George Mark Children’s House San Leandro, CA. 2016.

Ryan House Phoenix, Az. 2015.

CT Ronald McDonald House Austin, TX. 2016.

Dell Children’s Hospital. Austin, TX. 2015.

bereavement space to access the driveway below, whether it be to access their car or a hearse, a slow ramp, similar to the ramp that falls from Debartolo Architect’s Prayer Pavilion of Light, allows the visitor to descend to the Reflection Garden to gather their thoughts or simply enjoy the peaceful space. With the trickling of water and brightly colored trees, this space is both calming and whimsical. This garden contains mementos from those who have died, creating a colorful collage on the low walls surrounding the garden. This device used to pay homage and remember those who have died was used at every facility that I visited throughout my research. The visually beautiful collage of individuality and color converges with the understanding that each one of these ceramic pieces is the memory of a single child who spent the end of their life in this place. This realization is both heartbreakingly sad and utterly transcendent as I imagine all of the children sitting in that garden with me.

North-South Section

Prayer Pavilion of Light. Debartolo Architects. Phoenix, Az. 2016.

Descending further on the ramp, the visitor passes under the corridor leading from the main building to the Lighthouse, where water quietly spills from The Lighthouse Chapel wall, marking a re-entrance into reality - though more peaceful after the journey. In the Drop-Off Court, rather than experience an asphalt lot, the visitor encounters another greenspace spilling into the driveway with native vegetation and shade from the surrounding Live Oak and Elm trees.

Cathedral of Saint Mary of the Assumption. Pier Luigi Nervi, Pietro Belluschi, Angus McSweeney, Paul A. Ryan, John Michael Lee. San Fransisco. 2016.

The Lighthouse Chapel

Memory Garden

The adventures of w i n n i e th e po o h A.A. Mil ne

ibliography

â&#x20AC;&#x153;How l ucky I am to h av e so m e th i n g that makes saying go o d bye so h a r d. â&#x20AC;?

ibliography

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Michelson, Kelly. “Every Pediatric Hospital Should Offer a Palliative Care Program.” The Huffington Post. TheHuffingtonPost.com, 16 Dec. 2015. Web. 14 Jan. 2016. McGee, Beth, MS, and Anna Marshall-Baker, PhD. “Loving Nature From the Inside Out: A Biophilia Matrix Identification Strategy for Designers.” Health Environments Research & Design Journal 8, no. 2 (2015): 115-30. Accessed March 15, 2016. doi:10.1177/1937586715578644. Mogul, Fred. “Too Many People Die In Hospital Instead Of Home. Here’s Why.” Kaiser Health News, September 22, 2014, accessed March 12, 2015, LexisNexis Academic. National Hospice and Palliative Care Organization. ChiPPS White Paper: A call for change: recommendations to improve the care of children living with life-threatening conditions. October 2001. “NHPCO’s Standards for Pediatric Care.” National Hospice and Palliative Care Organization. Accessed January 24, 2016. Novak, Laura. “A Home Away From Home for Dying Children,” The New York Times, February 10, 2004, 5. Parkinson, Anne M., and Rhian Parker. “Addressing Chronic and Complex Conditions: What Evidence Is There regarding the Role Primary Healthcare Nurses Can Play?” Australian Health Review 37, no. 5 (September 13, 2013): 588-93. doi:10.1071/ ah12019. “Pediatric Long-Term Care...Long Overdue.” Melnic. Accessed February 11, 2016. http:// www.melnic.com/pediatric-long-term-care.jsp. Ruffing, Cathy, and LaDonna Pavetti. Center on Budget and Policy Priorities / SSI and Children with Disabilities: Just the Facts. Report. December 14, 2012. Rushton, Cynda Hylton. “A Framework for Integrated Pediatric Palliative Care: Being with Dying.” Journal of Pediatric Nursing 20, no. 5 (October 2005): 311-25. Accessed March 24, 2016. doi:10.1016/j.pedn.2005.03.003. Sherman-Bien, S. A., V. L. Malcarne, S. Roesch, J. W. Varni, and E. R. Katz. “Quantifying the Relationship among Hospital Design, Satisfaction, and Psychosocial Functioning in a Pediatric Hematology Oncology Inpatient Unit.” HERD: Health Environments Research & Design Journal 4, no. 4 (2011): 34-59. Accessed February 26, 2016. doi:10.1177/193758671100400404. Siden, H., M. Miller, L. Straatman, L. Omesi, T. Tucker, and J. Collins. “A Report on Location of Death in Paediatric Palliative Care between Home, Hospice and Hospital.”

Palliative Medicine 22, no. 7 (2008): 831-34. Accessed December 20, 2015. Salonen, Heidi, Marjaana Lahtinen, Sanna Lappalainen, Nina Nevala, Luke D. Knibbs, Lidia Morawska, and Kari Reijula. “Design Approaches for Promoting Beneficial Indoor Environments in Healthcare Facilities: A Review.” Intelligent Buildings International 5, no. 1 (2013): 26-50. Accessed March 12, 2016. doi:10.1080/175089 75.2013.764839. SSI Annual Statistical Report, 2013. Report no. 13-11827. Social Security Administration, 2014. Taka Tuka Land. Germany. http://www.archdaily.com/519/taka-tuka-land-baupiloten US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau. The National Survey of Children with Special Health Care Needs Chartbook 2009-2010. Rockville, Maryland: US Department of Health and Human Services

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