A Personal Experience Leads to a Role in the Health System

February 13, 2019

I have been involved with Alberta Health Services since February 2013 as a family advisor with Critical Care plus more recently as a Patient and Community Engagement Researcher (PaCER). My decision to become involved in critical care comes from my experiences with my wife, Barb, as she journeyed through emergency, neurology, cancer treatment and eventually the Intensive Care Unit, where she finally lost her battle with a serious late-stage cancer on Oct. 25, 2012.

Barb had been receiving regular holistic care appointments for 10 months; at no point during this period had she seen a medical doctor about her condition. Her health began to noticeably deteriorate – with nosebleeds, behaviour changes and worsening sinus problems. I finally took her to emergency on Sept. 25, 2012, where after a CT scan, we were told she had a large mass from her nasal cavity to her brain and around her eyes.

Barb was immediately admitted as a Neurology inpatient. The next day she had an MRI, two days later a bedside biopsy, and 4 days later the diagnosis of Olfactory Neuroblastoma – a nasty cancerous tumour in the nasal cavity, which had grown to her brain and around her eyes. On Oct. 5, 2012 she was discharged and I cared for her at our home for ten days. After three days of chemotherapy, Barb unexpectedly became unresponsive and lost consciousness.

Barb was rushed to the hospital by ambulance in the early morning of Oct. 20, 2012. My emergency department experience was like watching a slow motion movie – at least eight people arrived to manage all different aspects of keeping Barb alive- with IVs, blood pressure monitors and other machines of unknown purpose. With a surreal sense of ordered chaos, each healthcare worker was calm and professional while completing his or her specific roles quickly and expertly. I remember clearly when a doctor grabbed my arm- looking me in the eyes and asking if it was OK to use a ventilator, which I agreed to.

“In the ICU, as a family member you don’t fix things” and “ICU will be the biggest roller-coaster of your life” was the advice given to me by the social worker who introduced himself to me in the waiting room of the ICU Family Area before I went into the ICU to see Barb. This would later prove to be incredibly good advice- my experience with having a loved one in Intensive Care was the most challenging of my life, and something I will never forget.

Shortly after Barb was moved to ICU, I received a package of information, including a Family Journal, which had plenty of useful information, such as where to park, eat, how to get a family pager, the mission of Intensive Care, and how to attend bedside rounds. I also received a ‘Green Sleeve’ (Advance Care Planning: Goals of Care) package, which had a one-page ‘Goals of Designation Order’ as well as a 19-page booklet titled ‘My Voice’. Although the booklet was well-thought out and comprehensive, my own mental state at the time made it difficult to read and complete, and I remember wishing that there had been someone to sit with me and explain the concepts and help complete some of the forms.

Barb’s mother and I took part in the daily rounds in the ICU, which was incredibly informative. The doctors, nurses and respiratory therapists never lost hope that she might regain consciousness. Barb’s nurse would conduct Neurology tests every hour to try and get her to respond, either by waking up, or even just by squeezing his hand or finger. Sometimes she would respond. Other times she wouldn’t. This is where the ‘roller-coaster’ feeling I had been warned about really started to become apparent.

In the last two days of Barb’s life, I was able to bring in a CD player with some of her favourite music. The effect was profound- a nurse monitoring her from just outside her room came in just twenty minutes after playing Barb’s music to see why her heart rate had dropped by about 20%. There is no doubt in my mind that she could hear the music, and that it was giving her some comfort.

My experience with end of life care was very challenging- but also something I’ll never forget. The respect given to Barb and our family near and at the end of her life was mindful and greatly appreciated – from the family meeting with the medical team, to accommodations to give us extra privacy, and to the condolences from her ICU doctor who provided these in her room with us, close to the time she died.

When Barb’s ICU doctor met with me to discuss her autopsy report three months later, he asked me if I would consider becoming a Family Advisor for Critical Care. I soon accepted this role, which involves a number of activities, including co-chairing a provincial Critical Care Patient and Family Centred Care initiative which is focused on having patients, families and ICU staff working closely together to identify ways to enhance the very challenging ICU environment for everyone involved.  I’ve also had the opportunity to become involved in critical care research, which is very exciting and important work, as it will help inform change within Intensive Care.

There are many things I’ve learned about End of Life, with some of the big things being:

  • While in ICU, we always had that ‘ribbon of hope’; when End of Life (EOL) was expected and then reached, our ‘ribbon of hope’ was cut and things completely changed.
  • If handled with respect, compassion and mindfulness, the End of Life experience in ICU can be a sacred time for everyone involved.
  • End of Life is a potential reality in Intensive Care. It is incredibly tough on family members and I can only gather, on ICU providers that cared for the patient and their family members.
  • Grief and bereavement is very challenging, it comes in many different ‘forms’, and affects people differently. It typically is not dealt with well in our society, and may best be addressed by having people who ‘companion’ the bereaved instead of trying to ‘fix’ them.

Thanks for the opportunity to share my experiences.