Think surviving cancer is hard, try surviving palliative care

Ed Bernacki

I normally write on innovation and management issues. This is different. It’s a story that started in 2018 when I became a caregiver for my mom. ?In 2022, at 94, Doctors said her heart would fail. It's time for Palliative Care.? I learned things that I did not want to learn.? Her mild dementia now seemed unimportant.

This came after seven trips to the Emergency Department over two months in 2022. I was told it was congestive heart failure. I learned that Palliative Care provides “comfort measures”.? I had no idea I would give her 757 doses of hydromorphone and midazolam for her "comfort" when breathing issues started. ?For five months, day after day, I accepted that each day could be her last. ?

Then her cardiologist had an idea. It changed everything. Six months after starting palliative care, she was kicked out.?

Some context

For mom, it felt like she could not breathe.? It scared her. She hyperventilated until her blood oxygen levels fell to as low as 72 (normal is 96).? One night, a palliative nurse said she would not likely recover. ?For three hours her breathing was strained. Yet, when she finally fell asleep, her oxygen levels rose. She woke in the morning with no memory of what happened after so much medication. The nurse was amazed.?I made notes.

To watch was stressful.? Mostly I was alone with my mom, hoping I could avoid calling 911.

I produce idea journals. I used one for observations and Mom's quotes. I wrote down every medication I gave her. By doing so, I saw patterns that seemed at odds with heart failure. When I mentioned my observations to palliative nurses, I was told to stop thinking that she could recover. Finally, I ignored them and saw her cardiologist. He looked at her electrocardiogram and concluded that her heart looked typical for someone at 94. He explained a measure of heart effectiveness, the?ejection fraction ratio.?A normal ratio is over 55%.? Her ratio was 63%. This is good. ?He wondered if the problem was anxiety and mild dementia. ?He said to try a sleeping pill.? He was right.? Instead of having breathing issues at night, she fell asleep. Within six weeks, I stopped all “comfort” medications as mom slept well and most breathing issues disappeared.

The back story

I was living in Australia. When I learned my sister had cancer, I knew I had to move back to Canada. I did so in time to see her in a palliative care home. It was wonderful. Management understood the need to care for patients and their families.? It had an “Improvement” board to enhance services for “guests” and families. Staff interviewed families afterward to improve the experience.

The issue was my elderly mother. I assumed my sister would help if necessary. She was good at caring and decision-making and had the resources to accommodate Mom. I had never cared for anything with my global nomadic lifestyle, not even a cat. ?I was an expert in innovation, not caring for an elderly mother. I put aside my career to move back to a small city just before Covid-19 started.

About a year ago, it got worse. She woke me up saying she could not breathe.? This started a roller coaster of 911 calls. Paramedics would arrive and take her away. ? She hated the hospital. Several times she asked me to let her die. ???

I watched her on a?BIPap?machine in Intensive Care forcing oxygen into her lungs. I was told she may not breathe on her own. We said our goodbyes.? It was removed and I waited… The nurses seemed surprised when she started to breathe.?Despite this, doctors suggested palliative care. Reflecting back, no one talked to her cardiologist. There was no exploration of other causes. ?

I created a death action plan for Mom and waited. I slept with this plan on my bedside for months.

Using your expertise

My expertise is creativity and innovation.? As I had little to do during my long nights and weeks and months watching over her, I realized I was using these skills from my professional work: ? ?

• Observe and reflect?– I kept a journal to track everything. I recorded 757 doses of medications I gave her. By doing so, I started to see patterns. For example, the feeling of not breathing stopped 30 times while eating a meal. Why? I asked. Doctors had no idea.? Keeping a journal allowed me to pour my emotions into my writing. I wrote down quotes from my mother that she would not remember in the morning.
• Test assumptions?– my observations highlighted that her breathing returned to normal when she fell asleep. Hospital staff also noticed this. This implied that her heart worked well when she slept. ?This was confusing. I had to test the assumption that her heart was bad.

I also noticed how weak some related services were. The regional health authority which paid the bills for palliative care talked of a "plan" for people in care. I naively asked to see the plan. I envisioned a one-page plan with her details and recommendations. There was no plan written for her.

• Challenge authority?– ?Seeing the cardiologist was wrong according to palliative care nurses. It was a hard decision to make; to go against medical advice. ?When I asked the palliative care office about a sleeping pill strategy, they were angry. I was made to feel wrong.? No one followed up with me or mom to discuss her removal from palliative care. Nothing was learned through this rare example. ??
• Collaboration and teamwork?– I failed to do this effectively. While I had some family support it became clear that I would be acting alone in the daily management of mom. Instead of stepping up, some stepped away.? It was an emotional roller coaster as I felt sad to realize that no family member would see her powerful inner strength to survive such trauma and wake up happy. ?People seemed to forgot how much Mom contributed to their lives.

After her recovery, I realized that her new challenge would be dementia. I reached out to the local Alzheimer's association but this went poorly.? When I asked about the drug suggested by the cardiologist as being useful for people with dementia, I was made to feel be wrong for asking about drugs. I clearly offended staff with my questions. It was frustrating.?I have not heard from anyone since. (By chance, I received a call from a new person while writing this article.)

• Assume people will say dumb things - This is much like creativity killers. I have been criticized by people when I suggested new ideas or asked challenging questions in my professional work. I learned I had to ignore people who lacked empathy or made comments they thought were helpful that were not. Did I get any credit for being insightful and persistent in helping my mother from any medical person? No.

I used the expression, "made to feel wrong" several times. I was surprised by the discussions I had with people in which challenging something made me "wrong".

Need for innovative service design

Looking through the innovation lens, the medical world has much to learn about concepts like user experience and service design.?

By experiencing this process, I found problems with communication, service design, and inconsistent quality of basic processes. ?Perhaps the most ridiculous situation was palliative nurses filling needles with medication. By law, they must label them. A preprinted label was needed. Instead, they wasted time handwriting the details on masking tape that absorbed the ink making it unreadable. A nurse told me the private company was "too cheap" to print labels and, as it took more time, the company could make more money per visit.

Once the health service coordinator said mom no longer qualified for palliative care, I never heard from them again. This lacked professionalism.

Paramedics and several doctors said they did not know anyone removed from palliative care.? Mom’s medical condition was not predictable like cancer. Yet the system failed her. In truth, she did not beat palliative care. We should question why she was put into the program. I only wonder if a sleeping pill would have prevented 757 doses of “comfort measures”.

On November 25, she will turn 95. She still gets the feeling of “I can’t breathe”, oddly, around 5.00 pm. Instead of medication, I try to relax her and redirect her attention. Eating a meal helps.? Many times she hobbled to the dining table, struggled to eat, and then got up to wash the dishes

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That is quite an accomplishment considering the past year. She knows her memory is getting weak. Dementia is winning. It scares her. ?I make sure she gets her sleeping pill and is comfortable in bed.? We have our own private joke.? The last thing I say is, “I will see you tomorrow!”? She laughs and says, “I hope so.”?? So do I…?

I am in year two of this intense period with my mother. It is exhausting. ?I ended up having my own heart stress issues.? I am damaged. ?It also makes my future a bigger challenge. I have become very aware of services for seniors and the elderly. ?Many are poor.? There is a big need to reinvent many focused on users, not medical experts.? Perhaps someone will start to listen to users. Sometimes users of a service are also innovation experts.

Epilogue

Now that Mom is healthier, being a caregiver is even more demanding. On good days, she wants to be active. ?There are also bad days that cut into your heart.??There are more bad days now. Making a living as a caregiver is a huge problem. The financial challenge is immense when you can’t work yet need to. I will never catch up in income. Ageism will spot my future work. ??The only solution was to get up at 5:00 a.m. and head to a local coffee shop to work for an hour or two before Mom woke up.? I went back to my expertise in creating idea journals and explored the potential for one designed for innovators in this new World of Work and idea management.? This launches soon www.NavigatorJournals.com While I want online sales, my vision is to collaborate with organizations to use the Navigator concept to create new tools for staff to help them innovate. Initial interest is already looking very positive.

Ed Bernacki has many articles published on LinkedIn on innovation, conference design, and management issues. #palliastivecare #elderlycare #mom #seniors