Abbreviated Reflections and Observations from my Time at a Pediatric Hospital in Auckland, New Zealand
Long time, no post - sorry! I have been busy over here on the other side of the world learning and experiencing so much about how care and support is provided in New Zealand. It has been a lot for me to mentally sort through these observations and put them into a somewhat comprehensible narrative. What you will read below is just a snippet of the discoveries I have had, the observations I have made, and the insights I have gained. If I were to put all of my thoughts below, this blog post would be about 20 pages long and would need to be revised about 50x over the next 10 weeks as I continue my experience here.
I want to preface this post with a few disclaimers.
I am no expert on basically anything! These are all observations I have made regarding the healthcare system in New Zealand as it is compared to the United States. I have a very limited perspective on both systems, so keep that in mind as you read. These statements may not be accurate representations of the differences and similarities that exist in healthcare between the two countries. All of what is below is my perception of the situations and experiences that I have had the privilege of observing in New Zealand and in the United States, coupled with some of my own lived experience in the US healthcare system.
I have been in New Zealand now for a total of 23 full days. That is practically nothing. In that time, I have had the honor to speak to, shadow, and work alongside some extraordinary professionals and people who have graciously shared their own perspectives, lived experiences, and opinions, as well as answer the hundreds of questions I have asked them about how the healthcare system functions, death rituals, cultural differences, the nature of their work, and societal expectations/perceptions/reactions/views of a wide variety of topics. These are not easy questions to answer or topics to discuss with someone from a different culture and country when you are so accustomed to your own. (I know as I found myself being asked many of the same questions over the past 3 weeks!)
I have only visited a small area of the country so far and interacted with a relatively small number of people doing the type of work I am interested in learning about during my time in New Zealand. There is much more to see, explore, and many more perspectives, cultural experiences, and integral people still left for me learn from to get a better understanding of the broader picture as it relates to my project goals.
I'm expecting that many of these observations and reflections will evolve as I continue my time in New Zealand and my partnerships with more healthcare professionals, charities, organizations, families, etc. I expect that these observations will continue to evolve and change as I keep understanding care, support, mourning, and death practices surrounding child loss through my journeys to Chile, Senegal, Belgium, Ireland, and then back to the US. This is a momentary encapsulation of what I have observed and some of the thoughts I've had thus far, which I think is important to recognize. It will be especially interesting to see how these do change as I continue to learn.
With that, I think you are well-enough prepared to hear from me and read some of the thoughts I've had over the past few weeks as I have begun my Watson Fellowship!
Navigating Healthcare Systems as a Foreigner
Going into my first month in New Zealand, I had my intentions set to intensely focus on how children and families in New Zealand are supported before, during, and after the death of the child, and what cultural differences exist between the care, grief, and mourning practices here versus those in the US and later compared to the other countries and cultures I visit. But, in my first few days at Starship hospital, I found myself making a number of fairly ego-centric observations. I caught myself jotting down notes not always about the topics described above, but, about half the time, about the challenges that some families may face in navigating foreign healthcare systems, as I found myself doing for the first time.
Before I left the US, I spent about 10 weeks with the pediatric hematology/oncology outpatient clinic at Connecticut Children’s Medical Center observing and doing some supervised play and therapeutic interactions with the patients coming through the clinic. During that time, I was able to observe a good amount of the day-to-day operations of the healthcare system in the United States to supplement my own lived experience navigating our system. Being from Ohio myself, that time allowed me to gain perspective on how the US healthcare system operates in different states.
One thing that I have found myself reminded of when entering healthcare environments, particularly when patients and families are facing complex illnesses and needing invasive or substantial care, is that the environment itself is often one that heightens stress, challenges coping skills, and creates a sense of loss of control for those navigating it. Amidst this, patients and their caregivers are tasked with caring for medical needs, personal needs, and everyday life tasks in and out of the hospital.
In 2018, the United States accounted a foreign-born population of 44.8 million people. New Zealand, according to the 2018 census has almost 28% of the population born somewhere outside of New Zealand. So, this discussion is important to keep in mind for both systems.
As I went through my first few days in New Zealand, I noticed the little things in the hospital, in how the healthcare system functioned, and in the country in general that were different from what I was used to experiencing in the United States. Keeping track, understanding, and fitting into this different culture could cause an increased cognitive load for patients and families who are used to other areas and countries’ systems of care. I would imagine that this could add to feelings of stress, overwhelm, burnout, feelings of disorientation or lack of control, and make it more difficult to comprehend, remember, and comply with important information, directions, or to think of and ask the questions since a person can only take in so many details all at once.
Now, while in New Zealand, I have the benefit of speaking the same predominant language as the doctors, nurses, social workers, psychologists, and other staff members here. Yet, I still found myself thrown off by having to traverse the differences in my expectations and reality and trying to orient myself to the system here. And, I was not a patient or caregiver dealing with a health crisis, either!
Here are some of the things I found myself internally remarking about in relation to navigating the healthcare system as a foreigner.
There are different terms for things and locations that vary culturally. General operating systems that are part of daily life also vary.
Differing terms: e.g. Lifts v. Elevators; Car park v. Parking garage
Metric v. Imperial system
DD/MM/YYYY v. MM/DD/YYYY
There is an idea from the field of medical anthropology that illness is dictated by society and culture - it is the subjective human experience of a disease. This was evident in my observations and seeing what and how symptoms are reported, including the different terms and phrases used to describe illness and symptoms that would not have been used in the same way in the US. For example, in one patient encounter, a caregiver described a patient as “kicking out” in a certain situation. The professionals from NZ knew what this was describing, but I, being from the US and not using this phrase in this manner, did not. Another example is the colloquially used phrasing for vomiting (sorry!). In the US people often say "throw up" but here they say "spew". Neither is pleasant imagery... If unfamiliar with the differences or the terms, it could be confusing or could take extra mental processing when conversing about symptoms or experiences which could add to one's cognitive load without them even realizing its burden.
It can be challenging at times understanding different accents. For example, a number of people have misheard my name as “Marley” instead of “Molly” due to my accent and there have been times I’ve had to really listen intently to understand others with their accents.
The customs for which side you are driving AND walking on can change too in different countries! Even in the stairwell, we walked on the side opposite of what I was used to. Walking across the street, I have to always be cautious to look the opposite way first and double check that I’m not walking into oncoming traffic when going across a driveway.
Places and people will use a lot of unknown abbreviations without even realizing it or that it may be confusing. On top of that, the names for services, medications, places (theatre v. operating room), may vary. And the procedures and medications may be different from typical/available treatments in the family’s home system.
I have also found that the roles and names for certain positions are different in the different healthcare systems. The main one that stands out in New Zealand is the different responsibilities in a child’s care between a “Pediatrician” and a “GP”.
Then you have to consider that a family may be away from their typical comforts, support people, other family members, routines, foods, language, community, way of life, community resources, language, etc. too.
These differences are also important to recognize for healthcare workers who receive their training abroad as they may need extra assistance in navigating and understanding or adjusting when beginning. They may need added support or guidance to prevent mistakes or miscommunications, too, as they become familiar with the new healthcare system where they are working.
Support Resources for Families and Culture Around Them
New Zealand has the densest population of charities in the world, with, in 2018, there being one registered charity for every 169 people. The US, for comparison, has one registered charity for every 648 people according to the same data set. There are many support resources and systems, both governmental-affiliated ones and not, that work with the health sector and support families in times of crisis and illness. In talking with individuals in New Zealand, I’ve learned that in the hospital system, there is a lot of “outsourcing of support”. The hospital system will contract organizations or charities to work alongside them to provide support or resources to their patients or they will advertise and spread the message about relevant charities and groups to patients who may benefit from them.
During my time so far in New Zealand, I have observed different charities providing a wide variety of services to families at all levels of need and stages of illness. Families have been supported and aided through receiving meals, baked goods, family photographs, ambulance memberships, clothing, housing for while their child is at the hospital, creating keepsakes for their child who has passed away, and community/support groups, to name a few. I have also observed charities assisting families in accessing financial support, navigating bereavement, planning funerals, and more. These charities cover a wide range of areas of need and provide their services free-of-charge to families.
With the wide availability of charities and supports and the prevalence of these programs in New Zealand, I have found that there is a greater willingness here to both accept help through these charities and supports and to ask for help by stating one’s needs as there may be an organization that could provide assistance. To me, it seemed that this sort of support is much more common and made accessible to more people throughout the healthcare system than in the US, where oftentimes charities and organizations have guidelines around specifically who they can and cannot serve and offer services to since resources are more limited. With that, these options are not offered as often until it is known if a family is able to benefit from them.
Relatedly, in the US, there seems to be a sense of shame, stigma, or feelings of taboo around asking for help, accepting help, or getting support through some of the available resources. From my perspective, there is a cultural expectation that people continue to appear as though they “have it all together” with terms like “strength” and “toughness” and “resilience” often being attributed to those who continue going without utilizing too many of these resources. So, conversations around stating needs (from the family’s perspective) or determining them (from the healthcare professional’s perspective) can be vulnerable and delicate.
My observations in New Zealand made it seem that the norm is to accept help and to access these services and supports. There was a much greater ease with which all of these resources were discussed both by the healthcare professionals and the families in determining which might be helpful for them. I think one quote that stands out to me from my time to encompass this observation is from a conversation with a parent when being asked about their willinging to provide some information about their family to a charity that could provide meals, financial support, and other assistance. They said, “No need to ask if we’d like to access a service, any support available, we will take.”
Family Involvement in Care
As I went throughout my two weeks at Starship, it was fairly rare for me to walk into a patient room or area and to not see a parent or caregiver or for a nurse to have recently seen one. During my time spent at a children’s hospital in Connecticut, it was much more common for me to go into the inpatient rooms and not see a caregiver than it was here, particularly during the workweek and during business hours. I think this has a lot to do with the culture around work and leaves available to workers in the US compared to in New Zealand. During my time I heard about the extremely supportive nature of a variety of sectors of employment for parents while their child faced illness. In the US, only 10 out of 50 states have mandates that require employers to offer sick leave. In places with leave, most employees are given 10 days of paid sick leave a year which encompasses caring for ill family members and bereavement. You can also receive up to 12 weeks of unpaid leave to care for a family member for a serious condition or to care for your own serious condition. This is not awarded to hourly workers, as when they don’t work, they don’t get paid. There is also a program at some workplaces wherein other employees can “donate” their paid leave to another employee to cover their leave with pay if it exceeds the 2 week paid period. However, in general, employees are usually discouraged from taking leave and in some sectors are expected to find their own substitute if they are calling off work.
Meanwhile according to a page from the NZ government’s employment website:
All employees, regardless of their classification (ie including part time, full time, fixed term and 'casual') but not including the Armed Forces, are entitled to at least:
- four weeks of paid annual holidays (sometimes referred to as annual leave) after each 12 months of continuous employment for their employer, for rest and recreation. (Some employees, who meet specific criteria may agree in their employment agreement to be paid annual holidays on a ‘pay-as-you-go’ basis)
- up to 11 public holidays each year, (if they are days they would otherwise work). These are days of national, religious, or cultural significance, and employees should be able to take them as leave, where possible
- access to sick leave and bereavement leave:
- after six months of current continuous employment with the same employer, or
- after working for the employer for six months for an average of 10 hours per week, and at least one hour in every week, or 40 hours in every month.
Another thing that I noticed was that the ethos of “Family- and Patient-Centered Care” seemed to be much more ingrained in the system and culture of the hospitals here compared to it seeming like a goal or something that is still being worked to be fully integrated into the functioning of hospitals in the US. I noticed a lot of open, candid conversations with parents of patients and much longer clinical encounters, allowing for conversations about life in and out of the hospital and related to illness and not, with the families. Parents appeared to be valued members of the child’s care team. They did not, from my perspective, seem hesitant to speak up about their concerns, offer their opinions on plans moving forward, ask unresolved questions they had, or vocalize the requests they wanted to be met for the betterment of their child’s care and overall family functioning and satisfaction during the time of stress and difficulty that comes with illness and hospitalization. Within the hospital system, within all the disciplines that I observed, and in clinical encounters, parents/caregivers were encouraged to speak up and articulate their views, concerns, needs, and opinions. I often saw the staff turning to the parents/caregivers to hear their thoughts on a topic or course of action, with their opinion and perspective being highly valued in decision making.
Relatedly, I observed that in the healthcare setting in New Zealand, parents often took on a role as a primary informant, documentarian, and someone who often looked at the bigger picture situation both for their child while in the hospital and out of it. Parents and caregivers appeared to be skilled at this and hospital workers seemed to often seek this information from parents during interactions. Some parents even had notebooks that served as their own charts and records - detailing which medications were given and at what times, when reactions occurred, what was said in conversations during rounds, and other details around caring for a child and daily life.
This level of involvement with care and integration into the care team and medical decisions seemed to be beyond what occurs with most families in the US. Parents often do serve as that primary documentarian and informant for life outside of the hospital but while in the hospital their accounts tend to focus more on subjective matters of their patient experience rather than both the subjective experience as well as the medical happenings. Parents and caregivers are encouraged to be active participants in their child’s care and help direct medical decisions by voicing their concerns, opinions, questions, etc. but often they need more persuading and invitation to do so than what I observed here in New Zealand.
I think another important aspect to remember when working with patients and families from different cultures and countries is that there is variation in the conceptual hierarchy between doctor/other medical professional and family. Along with this, there are customs around respect and authority that may dictate when, who, how, and how much an individual may ask questions or offer their perspective on a proposed care plan.
Now, any number of these observations and perceptions may be related to the fact that the entire healthcare system in New Zealand and the United States operate differently. The level of parental involvement may be impacted by needs for caregivers to maintain employment to retain health insurance and other benefits in the US, where that is not necessary for accessing care in New Zealand. Or, it could not be attributed to this and could just be a difference in expectation due to social norms. Many patients I saw in New Zealand were also infants, which could have impacted the parental/caregiver availability as "employees who’ve worked for ... at least an average of 10 hours a week for 12 months or more just before the expected birth of the child, or the date they’ll take over the care of the child, are entitled to:
52 weeks of unpaid parental leave, 26 weeks of government-funded parental leave payments if they will be the 'primary carer' of a child born (or coming into their care) on or after 1 July 2018." The US law, The Family and Medical Leave Act of 1993, requires that employers provide "12 weeks of unpaid leave annually for mothers of newborn or newly adopted children if they work for a company with 50 or more employees."
It is difficult to ascertain why these differences may exist and/or if they are more so just patterns I observed in the handful of interactions I encountered.
General Hospital System Observations
Pediatrics
In the US, pediatric care generally extends through the age of 18. The American Academy of Pediatrics recommends that individuals continue in pediatric care through the age of 21. Many pediatric subspecialities will see patients in their clinics well into young adulthood. While at Connecticut Children’s Hospital, I learned that it was not uncommon for adults, even those with their own children, who were diagnosed with a cancer primarily occurring in pediatric populations to get their treatment from the pediatric teams and at children’s hospitals. Generally speaking though, those under 18 will be cared for by pediatric teams and the transition to adult medicine often occurs between the ages of 18 and 26, with most recommending this transition occurring between 18 and 22.
In New Zealand, pediatrics has an earlier cut-off and the transition to adult medicine is also made earlier. At Starship, a children’s hospital, I learned that there is a strict cut-off for going into the children’s emergency department and for new admissions of ages 15 and under. There is a process that occurs when moving pediatric patients into adult care that usually begins anytime between when the child is aged 12 to 14 years old. This allows time for the patient to adjust to the changes and added responsibilities that come with being more responsible for their own healthcare. The actual transfer of care usually takes place at age 16 and when the child’s health is stable. Once they do make the transition into adult care, they are still able to bring a caregiver or friend into their appointments with them for support and assistance, but they can also choose to go alone. If a child is admitted to a pediatric service before the age of 16, they are able to stay beyond that age in some specialities and cases, but it is uncommon for New Zealand pediatric caregivers to look after any patients older than 18. It does occur that they will have patients who are 18 or 19, but it is rare.
Documentation
Another unexpected difference I discovered is in how the whole hospital operates. Ten years ago, approximately half of all hospitals and office-based physicians were using electronic health systems for records, charts, etc. in the United States. Today, those statistics are much closer to 100%.
At Starship hospital, the only hospital I have observed so far in New Zealand, most wards relied on paper charts and notes while caring for their patients. Most everything was written by hand, including medication lists, chart notes, and weight graphs. All of these were stored in a labeled binder for the patient and put into a slot for the room where they were located. These paper charts get scanned into the computer system then so they remain accessible and have a record after the hard-copy versions are safely discarded after an admission.
There are many other areas of observation that I could recount, but I think those are best to reflect on after I have gained some more experience and understanding. But, in the future, I will hope to make some other posts to document cultural differences I have learned about that occur while providing care and during important rituals, a reflection on pediatric (or paediatric) palliative care, and death and funeral practices in New Zealand. I also hope to conduct some interviews with people I meet and share those in a podcast-style format so I those directly involved in this work can share their perspectives. If you have any questions or things you are curious about with regard to any of this work or these topics, leave me a comment or send me an email so I can be sure to ask them to relevant people so that we can all learn together!
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