Insights (Essays) April 2019

Everything I Really Need to Know, I Learned in Caregiving

Maggie Keresteci

care

In Everything I Really Need to Know I Learned in Kindergarten, Robert Fulghum (2003) noted that “the examined life is no picnic.” As a caregiver, I can tell that healthcare is no picnic either. Governments have come and gone, and for decades, we have struggled with how to transform healthcare to deliver care that is excellent and patient- and caregiver-inspired so that the system works efficiently and smoothly. Like Fulghum, I realized that, contrary to widely held beliefs, the approaches to achieve meaningful transformation  need not be highly sophisticated and complicated.

As Fulghum noted, wisdom does not only come from the top of the educational or professional mountaintop. There is no healthcare yogi dispensing wisdom to those on the mountaintop. Some answers are right in front of us, in the midst of the desert, in the lived experiences of patients and caregivers. As an N of 1 also working in the system, I do not speak for anyone else but do think that many of my experiences and thoughts about the health system are shared by thousands of Ontarians who are caregivers. One in four Canadians provides unpaid care to someone, which if paid for in the system would cost approximately $24bn.

Fulghum inspired me to think about some of the simple mantras we learned as children, which, I realized, serve us well when I think about how I want to live my life and be treated as a caregiver. Here is what I learned as a caregiver, about healthcare and how to make it better for all.

Share Everything

Some silos in healthcare can be fully understood only by caregivers, families and patients involved in handling health issues. Although silos probably developed for a reason at some timepoint, we at least need to make the silo walls more permeable. How can silos impact patients and caregivers? As a caregiver of a relative with a rare kind of cancer that took almost a year to diagnose and needed an extremely intricate (lengthy) surgery for potential resolution, I was very busy, and we visited doctors across the Greater Toronto Area weekly. In addition to looking after my relative, I spent almost an entire day driving between three academic centres and one family health team to pick up and deliver X-rays that the facilities could not cross share. We can send a man to the moon but cannot share images in the same city?

I had to also compile health records I had no access to, something my relative attempted doing despite not being in any shape to do so. Health records belong to the patient. Caregivers need access to that information also, especially when the patient cannot manage self-care for multiple reasons. We are willing to share our records with the people and organizations protecting our health and healthcare. Please extend the same and transparency and willingness to share everything with us.

Play Nice and Don’t Hit People

Social media has given caregivers a unique opportunity to share ideas, worries and questions with peers, patients, clinicians and healthcare administrators. When clinicians or administrators are online and use Internet anonymity to belittle caregivers and patients, or to imply that we have superficial or no knowledge, it erodes trust and puts up barriers. We need to tear down walls, not build more.

When You Go Out into the World, Watch Out for Traffic, Hold Hands and Stick Together

I belong to a supportive network of caregivers and patient advocates on social media. Individually and collectively, we benefit from the peer support. The secret to this network being so supportive though is that while we do not always agree, we stick together and support each other. I would highly value  similar support from health professionals, which would help build much-needed trust in our relationship.

After being a hallway patient for several days at a large Greater Toronto Area hospital, my relative was discharged on a Friday afternoon without any discharge plan or follow-up appointment date. In essence the hospital sent us out into the world, but we were not prepared for what the traffic might be like.. Because of the diagnostic procedures she underwent, several drains remained, significant infection was observed and white blood cell count results were abnormal. We all thought this was  a ruptured appendix and had no idea about any underlying condition. Although the hospital informed us about the arranged home care, no one called us, and on following up with them, a voice message promised a return call on Monday morning, which seemed far too late. Navigating the journey home during Friday afternoon rush hour can be scary at best and dangerous at worse, and we should be equipped with necessary tools such as a discharge plan that was planned with us not for us, and the equipment and education to ensure the patient’s physical needs would be looked after. It would help us enormously to go home or someplace else and deal with what might lie ahead if we were well prepared. We would have felt that someone was “holding our hand” and that we were “sticking together” in the traffic as we ventured out into the world.

Clean Up Your Own Mess

Mistakes happen in life…to us all.  When mistakes are made in healthcare, the results can be life-altering or life-limiting. This does not mean they would not happen but that we must learn from these mistakes. The first step is to honestly and openly talk to patients and their caregivers and show them due respect. Mistakes happen, and we know when they have happened to our loved ones. We will appreciate transparency and an apology, and we wish to be a part of the solution.

Be a Helper

I am channelling Mr. Rogers here rather than Fulghum, but humour me. When the person I am caring for is sick, perhaps dying, or the realities of caregiving become too much to bear, I could use some help, which can be as simple and profound as having a family doctor or a nurse or a friend ask me if I am okay and if I need anything. One of my fondest memories of our recent time in the ICU was of a kind nurse who offered to get me lunch. We sat in the balcony of an empty, dimly lit lecture theatre and ate lunch, mostly in companionable silence. Kindness matters and is a solid foundation upon which to build a relationship with the patient and the caregiver. While you are responsible for their healthcare, I am a big part of that healthcare and I need you too.

Listen When People Speak

Caregivers are not a homogenous group. I can only speak for myself; thus, it matters that I feel listened to as a person, a caregiver and someone with ideas to improve the system. Don’t listen to me just to respond, but really listen. The ICU clinician ignored my suggestion that my relative was nauseous because the nasogastric tube had moved down and was irritating her. The nurse’s request to pull it up a centimetre or two was also ignored. The next day, as the nausea persisted, I made the same suggestion to the surgeon, who ordered an X-ray, which showed the problem, and got the nasogastric tube repositioned. This narrative is not to prove I was right but to emphasize the importance of soliciting and incorporating caregivers’ insights. Caregivers may not always be right but their instincts and in-depth patient knowledge will aid in finding treatment solutions.

Make People Feel Welcome and Included

Remember when we were in kindergarten and the rule was simple, either everyone is invited to the party, or there is no party? In a recent ICU experience as a caregiver, I felt alienated and as if I was always in the way. I pleaded to be included in the morning rounds because I had information that could make a huge difference to my relative’s recovery. I implore medical professionals to include caregivers in decision-making and welcome them into their circle of trust, recognizing them as part of the care team. If someone is valued for their expertise and partnership in the team, you would expect them to be included at each decision point. More broadly, should I want to be a part of system change, recognize that my desire is the same as yours, to make the world a better place, and you will gain insights that you may otherwise miss.

Say Thank You

I grew up believing and continue to believe in the power of gratitude. I am grateful for our universal health system, and I want to help make it relevant and excellent for Ontarians in 2019 and beyond. I am thankful for a cadre of exceptional medical professionals who value caregivers and acknowledge the support caregivers need. They are leading the way in changing our culture. I am grateful for the care that my relatives (and I) have received in this complex system. We are fortunate to have some of the most talented doctors in the world. Despite the complexities and problems in our system, the front-line people want to make a difference, help and look after Ontarians.

Have Hope

I hope that front-line staff as well as government and administrators recognize and value the wisdom caregivers bring to system challenges and the care they provide to thousands of patients and the positive impact these have on the system. I imagine a system that recognizes and supports my contributions as a caregiver and moves the needle away from paternalistic care to an inclusive model of participatory care.

We are ready, willing and able to be a part of solutions for those we care for and for the system that we depend on. Please hear us, see us, support us and work with us.

About the Author

Maggie Keresteci, MA, CHE, is a family member caregiver intent on improving the lives of her peers and is the founder and principal consultant at MKH Solutions (Healthcare).

linkedin.com/in/maggie-keresteci @maggiekeresteci

References

Fulghum, R. 2003. All I Really Need to Know I Learned in Kindergarten. Toronto, Canada: Penguin Random House.

 


Comments

Nita wrote:

Posted 2019/04/16 at 12:33 PM EDT

Maggie,
Despite working in healthcare from a peripheral perspective (not front-line), your story brought tears to my eyes! What a wonderful analogy you've developed between what we learned in kindergarten and what healthcare could use today. Interestingly, I recently listened to a podcast (99% Invisible) that explored the origins of kindergarten and Froebel's gifts. Unfortunately, the simple lessons Froebel wanted children to learn evolved into the commercialism of today. Perhaps similar to the evolution of healthcare. What was the original vision of Canada's universal healthcare system seems to be eroding, given current cuts and the rise of privatization. I hope that your words reach many as I believe they have the power to change, as long as we start listening.

 

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