“Leave a legacy, not a mess”: The costs of not preparing your Advance Care Plan

In this blog post, British Columbia’s Connie Jorsvik — a former registered nurse and current independent healthcare navigator and patient advocate — shares her thoughts on the financial and emotional costs of not preparing your Advance Care Plan. She also provides tips on how you can take care of yourself and your family.

Completing your Advance Care Plan (ACP) is critical. Without preparation, people often experience shock very quickly. People are shocked if they or a loved one are diagnosed with a serious illness. In many cases, there is shock that the healthcare system isn’t completely free. People often feel like they are getting the wrong information — that it can’t possibly cost $12,000 per month, per person, to be in private long-term care, or that $5,000 a month can’t be the correct price for a certain medication. Even parking costs can be considerable when a loved one is going to require a lot of days at a hospital. It’s important to plan because anything but the most basic services are not covered by our healthcare system, and you want to protect yourself and your family.

• Download your free Advance Care Planning Kit
• Related: Tips to make your advance directive useful and usable

Government-provided care is extremely limited — the amount of money given to residential care facilities and all home care agencies is simply not enough. Without planning, you likely won’t be able to afford the services you will most likely want to have, such as additional home care, or privacy in a hospital or residential care centre. If you can’t afford the care you want, often a family caregiver ends up needing to step in.

The bulk of the time that is an adult daughter or daughter-in-law who is forced to take a step back from her own career and family. In the past six years, I have seen only one son who has stepped up to be the primary caregiver. In all other cases, it’s been a woman: an adult daughter or daughter-in-law, or sometimes a niece or a granddaughter. Many of these women are in what we call the “sandwich generation,” meaning they are still caring for their own children, working at the peak of their career, and with the addition of another responsibility, multitasking to the greatest degree possible. They have no choice but to work from six in the morning until late at night (and sometimes throughout the night, if care is needed). By not preparing financially, the emotional and physical burden on the family can be absolutely crushing.

Protect yourself and your loved ones

I’d like to share a story about a couple, Frank and Brenda, who were both in their mid-80s and had been quite successful in life. They lived in a multimillion-dollar home in the richest part of Vancouver. Frank was the primary caregiver for both himself and his wife, and as many caregivers do, he was hiding her dementia from the world. He was helping her cope on a day-to-day basis and keeping her at home as much as possible, where she was comfortable and where no one could notice how advanced her dementia was. As is often the case, the caregiver suffered serious health issues, and Frank ended up with severe peripheral vascular disease and ended up in the hospital for more than a year. He was forced to have multiple amputations that went further and further up his legs. Their three adult children travelled to Vancouver and found that, in addition to their father’s condition, their mom was in absolute disarray. Brenda was out of groceries, didn’t know where she was, and was scared because she couldn’t get to see her husband. Two months later, she fell down a flight of stairs and broke her hip.

Frank and Brenda both needed full-time care, but didn’t want to go into a public facility and wished to stay together. Between the two of them, it was going to cost more than $20,000 per month for their care. Though their house was very valuable, they didn’t have any money that was liquid and easy to turn into cash. There was no way for the family to get a line of credit on their house, and they were told they would have to sell their home as quickly as possible. They lost more than a million dollars on the sale of their house because there wasn’t a contingency plan in place.

Talk to your bank well ahead of time and ask, “If I’m in an emergency crisis, what can I do to liquidate my home value so I’m able to live and get the care I want without having to sell my house in case of an emergency?” Have cash immediately available for these kinds of situations and not locked up in investments that are going to take a while to access.

Another consideration is the need to be clear and take precautions with your money. Financial abuse of adults is the number one form of elder abuse. I’m working with a man who has an estate of several million dollars, but the family refuses to have any of that money spent on putting him into a care facility. Instead, they would like to keep the money for their inheritance. Make sure you protect yourself in a situation where you might not trust your children to make the best financial decision for you. I’ve seen where families are permanently broken because one person is using their parents’ bank account as a piggy bank while they are in the hospital or in long-term care, and suddenly the estate is bankrupt.

Take a page from Marie Kondo on your accounts and files — clean them up, then simplify and understand your finances and wishes. We need to do that when we are younger, because when we get older we get confused and often don’t have the energy to go through everything to see what’s important and what isn’t.

Plan now for peace later

One of my mottos is “leave a legacy and not a mess.” Advance Care Planning is a series of discussions that are put into documentation, but those conversations and thinking have got to come first. The number one thing in starting your ACP is thinking about your values and your beliefs about your life. These are questions like:

• If I only had one month left to live, what’s most important to me?
• What are the things I would want to have prepared ahead of my death?
• What are the things I want to say to people?

It’s really important that those wishes are clear to the people we love because families can be riddled with guilt when they get to those last moments and they have to blindly guess what you would want. It’s those cases that absolutely tear me apart, when I see families that are going to be riddled with angst for the rest of their lives because they’re not sure they made the right decision. Having conversations about beliefs, values, wishes for care, and finances makes all the difference in the world.

• Related: Advance Care Planning: When a patient’s wishes are ignored

Use this blog as a conversation starter

Don’t wait — if you’re looking for an opening to start an ACP conversation, use this post! Starting is really as difficult as you make it out to be in your own mind. I knew I had to walk the walk, since I was talking the talk in my work: I needed to talk to my adult children about my values and beliefs for future healthcare. I invited my daughter over, and said, “I just want to go over a few things about the future. They’re weighing on my mind.” We had some wine and played cards, and had a light conversation where I could review my wishes, and my personal “in-case-of-emergency” form, which I have a copy of posted on my fridge. There’s information on where to find my life insurance and my investments to take away the guessing and uncertainty if something happens.

I know there are families where death is a totally taboo subject — adult children never want to believe that their parents are going to die. If it is a totally taboo subject for you, then you must put all these things down in writing and have that in your emergency file. All of this is so that when that time comes, at least your loved ones have some instructions, and you can have peace of mind knowing that you’ve prepared to “leave a legacy, not a mess.”

Connie Jorsvik, a former RN and current independent healthcare navigator and patient advocate in B.C, is a specialist in Advance Care Planning. She speaks on this topic locally, provincially, and nationally. She has collaborated with Dying With Dignity Canada on its upcoming British Columbia ACP toolkit, and has created a comprehensive ACP workbook that includes financial considerations, “Empowered Patients, Empowered Caregivers through Advance Care Planning.”