Quarter of the Way Through my Watson Year
I feel a strange combination of pride, disbelief, shock, and sadness typing that I am a quarter of the way done with my Watson year. This is the opportunity of a lifetime and 25% of it is already completed. Part of me wonders how it has only been about 90 days since I arrived in NZ (86 to be exact, 88 since I left the US). The rest of me wonders how it has already been that long! Time has a funny way of working like that, doesn’t it? It can move fast and slow simultaneously, causing it to feel like both yesterday and 4 years ago that navigated my way through the Auckland airport and into the country I’d call home for the next 12.5 weeks.
It is hard to encompass my time here in one post. Before I started reflecting on what I’ve done and learned throughout al of my visits, observations, and conversations, I thought that I’d use this space as a way to concisely answer my project question “How do different countries and cultures support children and families before, during, and after the death of a child?”. But, actually, that is an impossible thing to answer concisely and I think that reading through all of the other blog posts that I wrote provide a much clearer picture of how support is provided across the country than what I could write here. Even then, though, I am not sure that my other bog posts accurately capture what I have learned and experienced. Frankly, I am not sure how to actually answer the question that I posed to begin with.
I can discuss different forms of support that exist and areas in which parents and families felt they could have been better supported. I could highlight some of the Māori practices that I learned about or ways in which Māori and Pacific support liaisons support patients and families in hospital, palliative care, hospice, and community settings. I could even reiterate themes from the stories shared with me by bereaved parents about their experiences.
I’ve been wrestling with worries over whether I am doing this project right. I’m wondering if I am asking the right questions, connecting with the right people, and seeking out the best experiences. If I am generous with myself, over the past 3 months, I have learned a lot about how to support children and families before, during, and after the death of a child and how that is done in a New Zealand context. If I am slightly more pragmatic, I’ve learned very little considering how much there is to find out.
I think the trouble of trying to encapsulate the time that I spent in New Zealand, in this moment, is that I have little on which to compare my experiences. I am interested in how different countries and cultures approach this topic and so far I have been to one outside of the US. It may just take more time for that understanding and clarity to come to me. Or it might not ever come to me and I may just need to rephrase my question. The questions I am exploring are massive, in a word, and it is insane to expect to be able to have a concise answer to them after three months and a visit to one country. It is crazy to expect to have any answer even after the year is over.
With that said, I believe in this project and this work so much, and it is working with such a vulnerable group. I feel a lot of pressure to get it right and to use this amazing experience that I was given to help make a change for the better. In the past, I’ve already been known to be somewhat of a perfectionist and the past three months have been a challenge to fight against those tendencies. I want to do everything as I “should”. It is an especially hard thing to strive for when it is very unclear what that would even look like.
There are so many different avenues that I could take to learn about the support available for children and families before, during, and after the death of a child in different countries and cultures and I do have to make decisions to go down one path versus another based on time, accessibility, feasibility, etc. And yet, then I also struggle with regret over not taking the other path. Three months is a long time to spend in a country and at the same time that I feel that it is the time for me to move on to my next country and have new experiences, I can’t stop myself from thinking about all of the experiences I didn’t have or wonder if I should have pursued other opportunities. It doesn’t help that imposter syndrome is coming into play here, either, frequently causing me to question if I am accomplishing what I set out to, learning anything, or staring true to my project focus. While these questions have their benefit in helping me evaluate my progress and make sure that I am seeking opportunities and asking the right questions to keep learning, it would be nice for it to come with just a smidge less self-doubt…
When I ask myself, though, what lessons, approaches, services, etc. that I learned about during my time in New Zealand that I feel I want to incorporate into future work and believe that others should know about, I feel a lot more secure in the growth and progress I made in the past 3 months. During this time, I lived in 4 different cities, with 4 different families, worked with or had conversations with no less than 30 different organization or charities, attended a conference, went to a death cafe, sang waiatas, presented at the New Zealand pediatric palliative care education forum, filled one and a half journals with observations and musings, listened to podcasts and watched documentaries, explored art galleries and cathedrals, taken thousands of photos, visited cemeteries, and talked about death and grief on the beach, in family homes, in cafes, on buses, outside of a glacier, and at the top of the Auckland Sky Tower. Even in this list, I’m leaving out so many experiences. Every day brought with it a new understandings and learning opportunities.
I’m going to break down my time in New Zealand by week and list some of the major things that I want to remember and take with me, not only as I go through the next 3/4 of my Watson year, but as I continue on in my life and career afterwards. This list may not be a direct response to the original question that I posed, but it does provide a snapshot of what care looks like in New Zealand when viewing all together, I hope. I’m not sure exactly to what question this list is an answer for a broader public, but I am hoping it serves a purpose for those other than me. The amount of bullets in each week does not reflect the quality of experience but just are some of the important takeaways that I noted down during that time, which necessarily varied as I moved through the past 3 months.
With the lessons from each week, I also chose some photo highlights to include, too! These are not my favorites (that's like choosing a favorite child!), but rather some pictures I like that I don't think I've shared yet.
Week 1: July 31 - August 6
Parents know their child best and they are their biggest advocate. It is important to listen to what a parent has to say, answer their questions, value their opinions, and ask their input around decisions.
Good rapport with a family and effective implementation of child- and family-centered care allows parents to confidently speak up about concerns, questions, and requests for the betterment of their child’s care. But, so does trauma and constantly having to fight hard for what they feel they and their child deserve. It is important to acknowledge both and recognize where a family is coming from when in medical encounters.
The phrase “palliative care” holds a lot of stigma, so it is important to try to recognize these assumptions and work on educating patients and families about the benefits and support of palliative care when they are referred.
Health issues in a child impact the whole family and often their broader community. These are important to recognize and consider in conversations about healthcare plans, coping, and supports.
Siblings are often forgotten when there is a sick child or a child dies in a family. They need to be supported as they are facing change and challenges during these times, too.
Week 2: August 7 - August 13
It is disrespectful to talk about death and funeral planning while the person is still alive in a number of cultures. This is something to be really aware of when wishing to have conversations about end-of-life wishes and advance care plans.
The hospital setting is not the same as real life. Families function differently in and out of the hospital and may not be willing to share as freely or openly in the hospital as they are at home. What works in the hospital may not function well for their lives at home.
It is cognitive draining and challenging to navigate foreign healthcare systems. All the added challenges are not easily apparent unless personally experienced. Being culturally sensitive and competent in healthcare must include recognizing these additional barriers to patients and families.
A large part of working in palliative care is companioning. It is important to be a calm presence for families, to sit and listen, to take time to talk about what they wish (related to care or not) or to just sit silently.
Patient’s and their family’s past experiences influence their reactions and emotional responses to current events in healthcare settings. It is all connected.
Offering a small gift to a child and their caregiver(s) is a way to show that they are being looked after while in the hospital and that there is wrap-around support for their full family system available.
Week 3: August 14 - August 20
We are often guided by/taught/told how to care for the dead by elders in our communities and families. When families don’t have access to that, they can really struggle with making arrangements to honor the person they lost and may feel uncertain about if they are doing it “right.”
Many might not know what options are available to them when their child dies (i.e. taking the body home, planning own services, etc). Sharing this information is important so that families can decide what to do based on what feels best to them and how they want to honor their child.
Many charities to support bereaved parents and baby/child loss are started and led by parents following their own experiences with loss. Systems should listen and work alongside these families to make changes but not rely on them to make all of the changes themselves.
Peer support is really valuable. Having a group of people to connect with who have gone through similar experiences, understand the context of the situation, and can serve as a safe space where families don’t have to explain themselves is really beneficial.
Week 4: August 21 - August 27
It can be really hard for families to meet new people after the death of their child and know that they will never know that person who means so much to them. Keeping connections to individuals who knew their child alive is important.
Showing families that you still remember their child and acknowledge the loss with them can be really meaningful, especially after the initial rallying of support fades away.
Showing emotion with families you work with is okay, as long as it doesn’t overpower or turn to them needing to comfort/console you. It shows that you can and can often be a signal to the family that they do not need to be strong and have permission to show emotion too, particularly after a long illness.
Connecting families to supports that will be consistent and ongoing is paramount. Many supports and people disappear after hospitalization ends or the death of a child (doctors, nurses, etc). Having a community that provides support throughout those transitions is helpful.
Health disparities exist in more than just prevalence statistics. The type of care, facilities, professionals, funding, supports, etc accessible often are dependent on who you are and where you live.
It is important to care for parents in the hospital setting too. Having a child be hospitalize and ill is traumatizing and draining on parents, who need support and looking after too often.
Families should feel empowered to play a role in healthcare decisions and conversations but not feel that it is all dependent on them and that they are being asked to make calls outside of their scope or abilities.
All families need to be told about supports and services available to them early and often. Hospitalization of a child can cause shock and make processing of information challenging. Making sure that families are aware of potential support available to them is essential.
Week 5: August 28 - September 3
If local charities and organization in the same field can work together, it can save families a lot of hassle to connect with all of the groups individually, coordinate schedules, and they can avoid having to repeat their story over and over again, which is emotionally draining.
It is vital to pronounce names correctly.
When approaching a person from a different culture or background, do so with respect and humility. Show up as a caring person, set your ego aside, and listen and learn.
When working with others’ trauma and grief, it is important to care for yourself, recognize when work bleeds into other parts of your life, and not take on other people’s pain. As they saying goes, you can’t pour from an empty cup.
Medical professionals need more sensitivity training around miscarriage, stillbirth, and baby loss. There needs to be more systems in place to support families as they are going through these losses and more avenues for them to express this grief, without shame or stigma.
Week 6: September 4 - September 10
There are so many unseen additional burdens that come with caring for a sick child - financial, emotional, mental, physical. Recognize these.
Parents can experience PTSD from the hospitalization of their child. Healthcare professionals and other supports need to recognize that even if nothing happened during that particular hospital stay, clinic visit, or medical encounter, in the setting a parent is recalling all of the other times, for example when they had to forcibly advocate for their child to get their needs met, when things went wrong, when mistakes were made, when they weren’t listened to, or when their child was seriously/critically ill. That trauma accumulates. So reactions of parents to a situation in the healthcare setting may not make sense to the caregivers or professionals until the whole context is recognized, understood, acknowledged, and taken into consideration.
Children have a voice that needs to be heard, they need to be included in conversations, given a place to speak, and then they need to have their opinions, thoughts, and have their perspectives actually listened to by those traditionally making the decisions.
Using metaphor is really powerful working with adolescents and young adults facing medical crises. It is a way of storytelling and creating a shared language and understanding, but it creates distance from discussing the topic directly.
Use every opportunity to reaffirm choice, autonomy, and control to children, adolescents, and young adults in hospital settings. I really liked how one professional I spoke with refers to all of their patients as “boss”.
Week 7: September 11 - September 17
Families/individuals often need reassurance that they aren’t “grieving wrong” and that others have experienced what they are experiencing. Many find hope and comfort in seeing individuals further along in the grieving process.
Don’t forget about dads and grandparents in the experience and dealing with the grief that comes from miscarriage, stillbirth, and baby loss. The grief may be expressed differently, but it is still present and requires support.
Rituals and memorials can change and evolve with grief. They don’t have to stay the same from year to year. Traditions can be modified. They don’t have to start from the beginning, but can grow and vary based on what feels the best or most meaningful and supportive to the family or individual at the time.
Grief and joy can coexist.
Week 8: September 18 - September 24
Providing support for families experiencing miscarriage is not a nice service, but a necessary service.
There is a culture of silence around death that needs to be broken.
When people are involved and have an active role participating in supporting end-of-life care, when they go back to their own lives, they often report growing (rather than collapsing) from the experience.
At end of life, faith can be either or both a help and a hinderance to an individual and family. It is important to recognize this and offer support as appropriate.
“Just be with what is, not what if.”
Week 9: September 25 - October 1
A lot more people are involved in supporting children and families before, during, and after the death of a child than those who recognize or acknowledge that role. It is interesting to consider why that is and what impact it has on the way that services are provided.
Remembrance ceremonies are really important and impactful when working in a field that deals with death and loss. These should be commonplace and required for workers to attend to gather and reflect, in my opinion.
Week 10: October 2 - October 8
Death doesn’t discriminate.
Community and connections can be made everywhere. Kindness goes a long way.
Week 11: October 9 - October 15
People grieve differently. There need to be options available to support individuals in their grief process and desired ways of honoring their loved ones.
COVID-19 will have lasting imprint on lives. There are so many secondary losses associated with the pandemic, such as not being able to look after loved ones at the end of life, engage in normal rituals or grieving practices, or connect with community. This can have a profound impact on attitudes, responses, and reactions to death, loss, and grief.
Week 12: October 16 - October 22
Being from a specific culture does not mean the same thing to al people within that group. It is important to recognize both the culture (and its importance/significance) as well as how it functions in the life of the individual person or family.
It is important to find and recognize the support systems that are available for different patients and families - church communities, cultural groups, extended family/whānau, school community, etc.
Childhood bereavement does not fit nicely into the category of physical health or mental health (since it is inappropriate to pathologies grief and a normal, natural human experience). It is best described as a public health issue, especially considering the long-term impact on both physical, mental, and community health that unresolved and unsupported childhood bereavement can have.
Seeking and receiving feedback is essential for improvement.
There can be hope after loss.
When supporting someone who is grieving, it is okay to say that you don’t know what to say. It is better than saying something insensitive or hurtful.
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Very powerful insights and important takeaways for us all.