John and his son in boat
UHN Patient Partner John Schreiber, (R), pictured with his son, Tucker, on Georgian Bay, shares his story as part of National Advance Care Planning Day, which is Sunday. (Photo: Courtesy John Schreiber)

Late afternoon on Feb. 27, 2013, John Schreiber was an able-bodied, middle-aged man strolling confidently about the job site when a subarachnoid hemorrhage upended his life.

Like most of us, he hadn't reflected on his mortality, and he wasn't at all prepared for the months of oblivion, confusion, and uncertainty that lay ahead.

John was however, as he freely admits, blessed with an extraordinary unfolding of events. A foreman found him shortly after his stroke and promptly dialed 911; skilled specialists performed their magic in the Emergency Department and the operating room; and, once he made his way to UHN, Toronto Rehab's energetic teams ensured that he participated fully in the therapies that became his focus for the many months to come.

This chapter of John's story had a brilliant ending, but he knows that it could have been otherwise. John, who is now a UHN Patient Partner, is telling his story to UHN News to mark Sunday's National Advance Care Planning Day, a day for people to reflect on decisions made at the end of life.

Like many of us, John had taken his health for granted. Although he was a father of three, and separated from his spouse, he had not considered the potential for chaos that a failure to plan might provoke.

Ontario's Health Care Consent Act describes the hierarchy of decision-makers that are to be consulted when treatment decisions are to be made for incapable patients. Typically spouses decide for patients, or the decision falls to their parents or their adult children.

Helpful resources for Advance Care Planning

 

Some patients, however, have domestic arrangements that test our abilities to identify the right representatives. John's case was one of those. His mother was available to decide for him, but the burden of decision-making was too heavy for an elderly woman who had recently lost her spouse.

John's children weren't old enough to assume these responsibilities, and he had six siblings who (in the eyes of the law, at least) were equally ranked substitute decision-makers. Two siblings took charge of his case and the others were happy to defer. It helped that these sisters were a nurse and a doctor, but their willingness to work together to take decisions that honoured his values, and looked out for his best interests, was an especially fortuitous part of the story.

The months following the injury were filled with despair, then hope, and then strenuous labour, but no family rifts ensued and no one was crushed by the weight of decision. John now appreciates how different it could have been.

Information about Advance Care Planning isn't hard to come by. The Office of the Attorney General has downloadable forms on its website that can help any of us name a decision maker and John had glanced at a number of materials during his late father's many hospitalizations. Brochures found their way into his hands, but were swiftly dispatched to the blue bin.

"Living wills," says John, "were for those in their mid-80s."

But, even if they didn't apply to him, John soon learned how powerful they could be.

During the last of a series of hospital admissions, John's father had become agitated and refused further medical interventions. His family advocated for comfort care and a transfer home, but they were met with resistance from the clinical team in their small-town hospital.

A written directive provided the support they needed to feel confident about their position and to make an effective case. This same document later served as a template for John's mother's own directive. Witnessing her husband's over-treatment gave Audrey the resolve to clarify her values and preferences.

Years later, a nasty fall made those wishes uncomfortably relevant. John's mother's course changed as abruptly during a holiday on Georgian Bay. The sun and waterfront were hastily exchanged for a hospital admission and multiple clinical investigations. Once her prognosis was clear, her heartbroken family knew how to proceed. Her comfort was given priority and her death followed shortly after.

"Her living will didn't make us miss her less," John says. "Her loss was still sudden and devastating, but we had a document and insights that allowed us to feel strong, not afraid of the system.

"Our mother had been a nurse," he adds. "She guided all of the children, influenced their education" and they knew what to do when her age, injuries, and medical complications conspired against her.

Don't miss our special event on Friday, April 21st, 2 to 3:30 p.m. in the Astellas Conference Room, 11th Floor, Peter Munk Building (PMB), at Toronto General Hospital.

A free talk called "Advance Care Planning:  Who makes healthcare decisions for me when I can't?"

Speakers will be John Schreiber, UHN Patient Partner;

Ruby Rajendra Shanker, UHN Bioethicist;

Keith Metcalfe, UHN Spiritual Care Practitioner.

The intended audience is patients, families, staff, and community members.

Please register (by Monday, April 17th) by emailing: Becky.Quinlan@uhn.ca or calling  416 340 4800 ext. 5647.

If you can't join us in person you can watch the presentation live at webcast.otn.ca.  

This presentation will also be archived at ​webcast.otn.ca. ​

John is gregarious and open. His praise for healthcare workers is effusive and he knows that he could endure another event if his capacity for sociability and pleasure remains intact.

He knows, however, that the talented and hard-working folks who "gave him his life back" don't give up easily in the face of long odds. Their values aren't always his values, and he has some hard-won experience that will be reflected in the directive that he's now planning to write.

He has some advice for all of us: "Go swimming, love life, but accept that death is natural too. It's all tied together."

In his view, our young healthcare providers need to stop dreading these hard conversations because "it's part of the business, it's just part of life." ​

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