Importance of representation agreements and advance directives

“Do I really need a representation agreement? My friend had no difficulty directing the care of her spouse when they were in the hospital with a serious illness.”

Barb, of Kelowna, e-mailed me the day my first end-of-life-related column was published atthe end of January.

She started by writing, “Here you are, not even started yet, and suggestions are pouring in!” And continued, “At some point, I would love you to tackle the situation of making sure you have a personal health directive in place prior to you becoming ill.

“Last year, I had a sister I did a health check on who ended up in hospital. What a mess! I became her advocate with health officials. All she had was a will, which kicks in only after you are dead. Such a stressful time. No one would listen.”

I asked to interview her at some point. That interview was this past week.

Barb has long been a promoter of getting “your ducks in a row.” She talked to her siblings years before about having the full gamut of paperwork done, i.e. a power of attorney, a representation agreement, an advance directive and a will.

But she still faced the quagmire of stressful uncertainty that occurs when those materials are not available.

He sister had a type of slowly progressing dementia but was living independently when she became gravely ill. Barb checked on her sister regularly and got her to the hospital.

The hospital intake went smoothly. Her sister was too ill to communicate for herself and everyone turned to Barb to learn about her sister’s history and condition. Barb was treated as the trusted sister she was.

It was after her sister was put in a ward and the practical need to have consent for medical procedures came up that the problems arose. One procedure that became necessary was to have her sister’s bladder drained. An infection was blocking the natural process and a minor procedure was required to insert a catheter to allow for drainage.

Except in an emergency, medical procedures cannot be performed on you without your consent.

Barb wasn’t armed with her sister’s advance directive, a document I referred to briefly in my last column, where you can give written consent for future medical procedures. Nor was she armed with a representation agreement, the focus of my last column, where her sister could have appointed Barb to give consent on her behalf.

Making matters worse, Barb wasn’t able to tell the medical folks those documents did not exist. She expected her sister had her “ducks in a row” like she recommended years before.

She searched her sister’s condo for the documentation and found other materials, like the useless paperwork from the sale, a decade previously, of her sister’s house. But she did not find the important stuff.

Without an advance directive or a representation agreement, medical folks can turn to a substitute decision-maker. But there was uncertainty about the existence of those materials and Barb wasn’t the top of the default list. Her sister’s daughters were, and they were in Alberta.

Barb was the person best equipped to help direct her sister’s medical care, and she was at her sister’s bedside but she had no authority.

Not only was she unable to help but she was kept in the dark. Your medical status is confidential and cannot be shared with someone without authority.

Imagine the frustration and helplessness Barb felt.

The happy news was that, although the red tape of consent resulted in some delays, Barb’s sister got the excellent care that is characteristic of the fine folks at Kelowna General Hospital and she recovered from her illness.

And, it turns out, her sister had indeed gotten her ducks in a row. Barb helped clean out her sister’s condo when she moved to Alberta to be close to her daughters. Sure enough, a representation agreement and advance directive were found with a boatload of inconsequential materials.

She had her ducks together, just not in a row.

Barb has some hard-earned advice.

First, make a representation agreement and be careful to appoint the most appropriate person as your representative. It doesn’t have to be an expensive and time-consuming process. My last column shared a link to a free form that you can use.

Most people Barb talks to about this issue are reluctant to put their minds to the possibility that they will face a level of illness needing someone to make decisions for them.

Her message to them is they are being unfair to their loved ones as they are the ones that will be are left in the lurch if those steps are not taken.

Her other advice is to keep your representation agreement, advance directive and any other important documentation about your care in a place where they can be found—and tell those who care about you where that is.

Interior Health and other health authorities suggest using a green plastic folder and keeping it on or near your fridge, noting paramedics are trained to first look there for any advance care documents. You can request a free greensleeve here.

Please e-mail me with any questions you might have about this subject matter, and I invite you to review the wonderfully informative “Frequently Asked Questions” Ministry of Health publication about advance care planning you can find here.

This article is written by or on behalf of an outsourced columnist and does not necessarily reflect the views of Castanet.