*** Time for this post? Reading…3 minutes. Listening…10 minutes. Considering…at your leisure.
The death phobia that pervades our consumer culture does not serve us well…
We get to indulge in death phobia because commercial interests are right there, ready to step in and do the difficult things for us. In this way, we avoid a lot of discomfort.
But we pay a price for our comfort…and it’s not just in money. We become death illiterate, with no language for what death asks of us and no emotional capacity to recognize that death is asking something of us.
The cultural story…
Research has shown how important our attitude is, both individually and collectively. When enough of us hold a similar point of view, it becomes the cultural story. I like the term meta-narrative—the big over-arching story—because it conveys how pervasive the cultural story about anything can be.
When it comes to death, here are some of the attitudes Westerners are steeped in.
Dying is something that happens to us; it isn’t something we do.
When you’re dying, you’re not behaving right—You’re supposed to live.
We are victims of death.
We should battle against death as long as possible.
Good things should never end.
Dying is akin to failing.
[tweetshare tweet=””[tweetshare tweet=”Attitude is the most important decision you’ll make today. ~Paul Dughi #death #dying” username=”LauranaRayne”]
Not all cultures tell the same story about death…
Eastern philosophy, for example, has different perspectives that have gradually come into our field of view. The most notable catalyst for this awareness was when The Beatles went to India in 1968 for a training course at the ashram of Maharishi Mahesh Yogi.
Although the most famous, The Beatles were not the first Westerners to become intrigued with the Eastern view. Alan Watts, who died in 1973, was a British-born philosopher, writer, and speaker. He’s best known as an early interpreter and popularizer of Eastern philosophy for a Western audience.
Watts moved to the United States in 1938 and began Zen training in New York, then earned a master’s degree in theology, and was an Episcopal priest before joining the faculty of the American Academy of Asian Studies.
I find it interesting to listen to him, with his unique blend of East/West understanding. It always intrigues me to see how things that seem opposite—like East and West— can be wrapped up together to make a bigger, more coherent and dynamic whole.
Here are some of Alan Watts’ thoughts about death and dying…
“…just the end of you as a system of memory.”
Now isn’t that an intriguing thought! For more of his philosophy that helps us think in another way, here’s a compelling video about accepting death.
*** Time for this post? Reading… 9 minutes. Viewing… 4 minutes. Doing something to unhook yourself…up to you.
We live in a time when dying has been sanitized and commercialized—like most of our life experiences. In our consumer culture, commercial interests have taken over all the difficult things we used to do ourselves when someone died. In return, we get to detach from the experience and feel less discomfort.
That wasn’t always the case. Here’s a recollection shared by Nora, a reader who is now 90 years old.
My first direct experience [with death] was probably around the age of 5 or 6. In those days people still often dealt with the death of a family member at home, and my mother was often called on to help with washing of the body. In this particular instance a baby had died and I accompanied her to the farm where the family lived. They were friends. I watched as the baby was washed and placed in a small wooden box, then taken out and buried on the property. I didn’t see the burial, but can’t recall why. I only remember that I wasn’t scared and thought it was completely natural.
That had changed by the time the Baby Boomers were growing up in the 1950s and 60s. By then, the funeral industry was in full swing. Death was outsourced and we didn’t learn, as Nora did, that it is completely natural and not scary. In the absence of such experience, we’ve become fearful of the unknown and susceptible to the death phobia that pervades the culture around us.
Death phobia serves commercial interests…
Here are just a couple of ways that come to mind:
Death phobia causes us to take measures beyond all reason to stay alive or keep a dying family member alive. This keeps hospitals, cancer clinics, nursing homes, pharmaceutical companies, and high-tech medical manufacturers in business. I find it interesting that more and more of the people working in these places are speaking out—saying that we’ve got it all wrong, that we need to view death differently, to see it as a natural process rather than a medical condition. Professor Ken Hillman is one of the front-line people who is speaking out. He’s an Australian intensive care physician who has seen a lot of people near the end of life. In his view, dying in the elderly is being hijacked. People end up in and out of hospital to treat failing organs or a broken bone caused by a fall. What the system does not recognize is that frailty is a natural condition that precedes death, and the elderly should be assessed in terms of frailty, not malfunctioning body systems. You won’t want to miss the TED Talk of this sensible and compassionate man. His recent book is A Good Life to the End.
Death phobia creates the climate where funeral homes are able to profit substantially from the susceptibility of grieving people. They know to manipulate us into spending far beyond our original intention—such as paying $10,000 for a casket that goes directly into a crematory furnace, or paying for unnecessary embalming of a body that will be cremated. If you think my attitude is too cynical, watch this undercover investigation by Canada’s CBC Marketplace.
The good news is…
There is movement back to sanity and we, the people, are no longer allowing the consumer culture and economic system to completely co-opt our experience of death.
Low-cost funerals are available if you do some basic consumer research. It’s easy with the internet to do some initial screening—starting with a search for “low-cost funerals” followed by your city name. When you find funeral providers that offer the level of service you want at a reasonable price, check their reliability. Read the testimonials on their website (and wonder why they don’t have any if they don’t). Check out the company at the Better Business Bureau. There you’ll discover how long they’ve been in business, their BBB rating from F to A+, and what customers have said about their experience with that company. After this pre-screening, call companies that still interest you and do a telephone interview. By then you’ll have enough information to make your selection. In my case, I selected a low-cost provider and got what I wanted for $1600. A full-service funeral home, with a chapel and reception area I wouldn’t be using, gave me a quote of $4100 for exactly the same services (simple cremation). It takes some time up front, but the reward is that you save thousands of dollars by not leaving it to your family to make a last-minute decision after you’ve died.
Memorial societies and cooperatives are not-fo-profit organizations made up of members who have joined together to obtain dignity, simplicity and economy in funeral arrangements. Instead of directly offering funeral services, they negotiate with existing funeral homes to obtain reduced rates for their members. You pay a modest fee to join, and then make your arrangements with one of the specified funeral homes. The selected providers have funeral homes that offer a full range of services including large chapels, reception rooms, and on-site parking. For some people, this is an advantage over low-cost funeral providers, which usually do not have these facilities and cater to people who have their own locations (home or religious building) for the service and reception.
People are befriending death so they are more comfortable with planning for its arrival instead of avoiding thinking about it.
People are talking about death over dinner across the world. Between 2013 and 2016, more than 100,000 death-over-dinners were held in 30 countries. Imagine that!
I love how they are taking charge! And other people must too, because there are now coffin clubs throughout New Zealand, in the UK, and in Tasmania.
The Coffin Club was started in 2010 by Katie Williams, a former palliative care nurse, to personalize funerals and drastically reduce cost. But, she says, the biggest attraction of the Coffin Club movement is companionship. Watch this short video and don’t miss the “chook-in-the-box” around the 4-minute mark.
So…has this inspired you in any way—even a small one—to see how you can unhook your death from the dictates of the consumer culture? I’d love to hear…
’I’ am just a collection of particles that is arranged into this pattern, then will decompose and be available, all of its constituent parts, to nature, to reorganize into another pattern. To me, that is so exciting, and it makes me even more grateful to be part of that process.
This talk was posted in April 2018. Emily Levine died on February 3, 2019. Emily’s Universe carries on.
*** Time for this post? Reading…10 minutes. Viewing…17 minutes. Considering…as you wish.
Death. Dying. Have you noticed that most people dance around the subject of death when they’re in a situation that puts it in their face—whether it’s their dying or someone else’s.
Case in point—the funeral director I met with a few months ago. I was making my Plan B arrangements in case my body donation doesn’t go through. (This could happen if its condition is unsuitable at the time I die.)
Obviously, I wasn’t prepaying for a funeral since I don’t know whether or not I’ll need their services. But he was willing to meet with me, on that understanding, to fill out the paperwork. There are some tricky questions on the forms that must be submitted when registering a death, and I wanted to make sure the correct answers are on file.
Within minutes, it was obvious that the funeral director was selecting his words carefully in an effort to avoid causing me discomfort. Fair enough, in that we had just met and he was trying to assess where I was coming from.
I helped him out by saying something very direct about my death that let him know he could speak freely. The conversation was much more satisfying after that.
Elders have a responsibility…
I think it’s our responsibility, as elders, to get over ourselves and any preciousness we may feel about dying. Shifting our mindset leads to more constructive behaviours, and we will be modelling a better way for our children, grandchildren, and perhaps also our friends.
We Baby Boomers have grown up in a death-phobic culture in which dying has been sanitized and commercialized—like most of our life experiences. This has left us crippled, unable to handle death well. And that’s what our children and grandchildren are learning from us. This is the time for us to turn the tide—to learn what death requires of us and become comfortable talking about it.
I’m not a fan of euphemisms…
In a death-phobic culture, it becomes the norm to use euphemisms—substituting mild, indirect, or vague expressions for those thought to be offensive, harsh, or blunt. Legacy.com, which hosts more than 20 million on-line obituaries, lists the top ten euphemisms used in death notices. If ten isn’t enough, here’s a longer list.
Went to be with (the/his/her) Lord
Entered eternal rest
Was called home
Left this world
Lost his/her battle
Somehow, the word “die” is culturally perceived as offensive, harsh, and blunt. Yet its actual definition is straightforward: To cease functioning, to stop living or existing, to undergo the complete and permanent cessation of all vital functions.
Euphemistic expressions for death and dying have been described as “verbal tranquilizers” and I think it’s a fair description of how we attempt to avoid what are seen as harsh realities.
In her excellent article about whether euphemisms are helpful or harmful, social worker Esther Heerema says:
…using the word “dead” makes it difficult to deny the reality. And, psychologically, while denial clearly needs to turn to acceptance, a little bit of denial is not all bad as a short-term coping mechanism. Indirect language can sometimes be a helpful way to mentally and emotionally handle your feelings gradually.
She also points out that euphemisms may be used for reasons other than denial. These include protection, to avoid being rude or offensive, to avoid discomfort, to offer spiritual comfort, or because of our own grief.
Her article highlights several considerations, including using euphemisms with children and principles for knowing when direct communication is the best choice.
Using euphemisms when speaking to children about death is usually not recommended. While the intention is to be gentle and protect the child from additional pain, indirect language is often confusing to a child. A euphemism involving terms such as “asleep” or “rest” might cause them to misunderstand and become fearful of going to bed at night. Similarly, saying, “We lost Uncle Fred last night” could prevent the child from comprehending that the person died and instead prompt them to go looking for Uncle Fred because he’s “lost.”
…When you should use direct language: The words death, dead, and dying should be used when it’s important to be very clear about what is happening. This includes when critical medical decisions are being made based on the prognosis of the patient, when speaking with those who might not fully understand indirect language, and when there might be a language barrier that might hinder understanding.
Talking about death over dinner…
Death Over Dinner, an initiative by Michael Hebb, is a deliberate opportunity to talk with others about death. For the past 20 years, Hebb has been working to “understand the secrets of human connection. His projects have turned into international movements and impacted millions. His second book Let’s Talk About Death was published in 2018.”
You might wonder why anyone would have a conversation about death over dinner. Here’s how it’s explained on the Death Over Dinner website:
The dinner table is the most forgiving place for difficult conversation. The ritual of breaking bread creates warmth and connection, and puts us in touch with our humanity. It offers an environment that is more suitable than the usual places we discuss end of life.
So, it’s an intriguing idea. What I really like is how they’ve created a structure that helps you plan an event tailored to your interest in the subject. After filling in a simple questionnaire, you receive practical planning and hosting help, including
Suggested dinner invitation text, including the read/watch/listen resources you chose to share with your guests
Proposed conversation prompts for your dinner
Post-dinner activities and ways to share your experience with the community
The cool thing is you can try this out even if you don’t go ahead with the dinner. I found it a really good way to gain perspective on the breadth of the topic of dying, to review the variety of resources they have included, and see what conversation starters they suggested. I highly recommend checking it out at deathoverdinner.org
You can get more of the back story in a 2016 article in The Atlantic or the book that was published near the end of 2018. Or listen to Michael Hebb himself…
What do you think?
Would you be inclined to organize a dinner to talk about death? If not, do you wonder why you wouldn’t? That might be revealing…
I know I’m getting old when I find myself saying, “What on earth is this world coming to?!!” It’s a fair bet that I’m not alone in this.
It’s easy to get lost in the heaviness of that perspective. In those moments, I find a breath of fresh air in Jeanne Robertson. Today I’d like to share her with you…
Jeanne Robertson is an American humorist, motivational speaker, and a former Miss North Carolina and physical education teacher. You can hear many more of these short clips on her YouTube Channel. Here are a few more samples of what you’ll find there.
All relevant people should have copies and know where the originals are stored. If this involves combinations, passwords or keys, they should have that information too.
Things to think about…
Your Will ~ After you’ve died, the executor needs a working copy to begin wrapping up your affairs. The signed original is required when the application for Letters Probate is made. Where should you store it? Here are some things to consider…
The lawyer who drew up your Will may be able to store it for you.
A safety deposit box in your bank is another possibility. However, don’t put it there until you check with the bank about conditions under which they can release the will. The law generally requires that a safety deposit box be sealed until probate is granted. Yet the executor needs the original Will to submit with the application to obtain probate, and you don’t want it locked up in a bank where you can’t get it out. Your bank may allow supervised removal of the Will immediately after death. But make sure this is the case before storing it there.
The executor may be required to prove he or she is the named person by producing a photocopy of the Will along with photo identification, Therefore, it’s crucial to make sure that each of your executors has a copy of your Will.
You might be able to handle the accessibility issue by registering your executors as co-signers on your safety deposit box. Of course, that could mean they will have access to the box even when you are alive. Best thing is to discuss this idea with your banker, explaining what you are trying to achieve.
Wherever you store your Will, provide your executor(s) with a copy—and note at the top where the original is stored. If that is a safety deposit box, also note where the key is kept. If the executor does not have a key, there is a substantial charge to drill open the box.
If you keep your Will in a fireproof, non-portable safe at home, make sure more than one family member has the combination or knows where the key is.
Your Power of Attorney ~ Your Power of Attorney document is needed when you are unable to look after your financial affairs. Instead of making photocopies of a single signed original, your lawyer may recommend that you sign an original for each of your attorneys for their convenience in having a signed original with them whenever they go to an institution to act on your behalf. In addition, you need a signed original that you will store in a safe, accessible place.
Anyone named as your representative in a document should have either a copy or an original of it.
If it’s a photocopy, note on the top where the original is stored and provided access information in a way that keeps it secure—i.e. don’t put the combination to your home safe on the top of the photocopy!
In some cases, a signed original is convenient for your representative to have. This applies to the Power of Attorney, Personal Directive, and Supported Decision-Making Authorization. Ask your lawyer if this is possible for the Power of Attorney. For the other two, make the number of copies you’ll need and have both you and your witness sign all of them.
Unsigned, self-generated documents
Some of the documents I recommend are not required by law but are helpful to your survivors. They include your Paper Trail, Last Wishes Letter, encrypted file of passwords and other sensitive information, and health history.
The principle here s to distribute them so they are not just stored in one place. This ensures both safety and accessibility.
Access is particularly important because some of the information will be needed immediately after death—your last wishes about disposition of your body, for example, and what sort of funeral arrangements you want or don’t want. Even if you have given your family verbal instructions, it’s best to have it in writing because people remember conversations differently at the best of times, and even more so when under stress.
Review and update …
[tweetshare tweet=”Divorce doesn’t automatically cancel your Will. Marriage does in many places. There are unintended consequences in both cases. The take-away—revise your Will when you experience any major life change.” username=”LauranaRayne”]Major life changes should trigger an update.
Divorce To many people’s surprise, divorce doesn’t automatically cancel your Will. As you might imagine, this can lead to unintended consequences.
Marriage On the other hand, marriage automatically revokes your Will in some jurisdictions. When you think about it, this makes sense because, once married, a person has different obligations. A new Will should be made as soon as possible after marriage. If it isn’t, the person will die without a Will and the estate will be handled under intestacy legislation, which often results in things not happening the way you would have wanted.
Your children have married, you have grandchildren This may change your list of beneficiaries and how you want your assets to be distributed.
Schedule a yearly review.
I learned this good habit from my friend Diane, who has mastered the art of staying on top of things and keeping them in order. I’ve taken a page from her book, and am now reviewing my documents at the beginning of each new year.
Sometimes I’ve had very few revisions. But last year I had cataract surgery, switched to a new optometrist, and decided to donate my body to medical education.
The relevant changes have been incorporated into my documents, I’ve put revised copies in my file, and have given a set to each of my kids to replace the previous version. It feels like a big accomplishment!
So… when yours are all distributed, pat yourself on the back and give yourself 17 points for…
*** Time for this post? Reading… 3 minutes. Completing documents… unknown and worth every minute. Dancing… as long as you want!
Quick! Do your near and dear know where your mother was born? Or your father’s full name exactly as it is on his birth certificate?
They should…because the funeral home will ask for these details (unless you’ve prearranged your funeral and already given them the information).
Do your kids know if you or your spouse ever received Family Allowances or the Child Tax Credit?
They should know that too…because the government will want the answer when your family applies for the Canada Pension Plan Death Benefit.
Not me, until I began getting all my paperwork ducks in a row.
Apparently, funeral homes are required to submit information about your lineage when registering your death with the provincial government. I have no idea why the federal government needs to know about Family Allowance cheques I received half a century ago…and I didn’t ask.
But you can be sure I wrote down the answers to those tricky questions and gave them to my kids.
Here’s a blank copy with space to fill in your answers to questions that might be tricky for others. Click on the thumbnail below for a PDF version or here to download the Word File.
We all know there are documents we should have in place before we die—not just one, but about half a dozen. Where to start?!!
Here’s a checklist.
Print it and put a checkmark beside the documents you’ve already completed.
Look at the unchecked items and focus on the one closest to the top. Beside that item, write down the first thing you’ll do to get it underway. Give your yourself a completion date for that first step. Then do it.
If you feel stuck, review my blogs on the various documents.
You may find that you have more than one document on the go at the same time because you’re waiting for something—your appointment with the lawyer, a chance to get to your safety deposit box and check on an item in there, an opportunity to discuss your personal directive with your children before arranging to have your signature witnessed, etc.
The key is to keep things moving and tick off items as they are completed. When you check off the last one, do a happy dance!
***Time for this post? Reading… 1 minute. Viewing…17 minutes. Thinking about it…as long as it takes.
My last few posts have been about several major documents that we should put in place well before we’re at the end of life. But dealing with mortality includes more than signing documents. Important as paperwork is, the human aspect of death is equally significant.
When you make your personal (advance) directive, be sure your family is on board. This doesn’t mean they have to agree with what you want. The question to ask them is… Will you honour what I want?
Kit Jackson mentions a small book called Hard Choices for Loving People. I haven’t read it. Here’s where you can find out more.
Five things to say at the bedside of a dying person…
***Time for this post? Reading…10 minutes. Listening…2 minutes. Implementing…one bit at a time.
I’ve recently written about Wills, Power of Attorney, and Personal Directives. All are essential because they cover differing aspects of managing our affairs before and after death.
These documents are not necessarily quick and easy to make. It would be understandable if you’re feeling that it’s an onerous task to put things in order for your eventual demise!
Sorry! There are three more documents to consider—your Last Wishes Letter, Paper Trail, and a Supported Decision-Making Authorization. These aren’t legally required, but will ease things for you and your family in a variety of ways.
This post gives you the essential information you need to make each of them happen. They don’t all need to be done at once, but after reading this you will have in the back of your mind what is required to get each of them completed when you are ready to do it.
Even if an adult is capable of making decisions, there may be times when they need someone to help make non-financial decisions. This is called supported decision-making.
A supporter’s help is often needed when the adult is ill, has mild disabilities, doesn’t speak English well, or is facing a complex decision.
A supporter helps communicate the adult’s questions, concerns and decisions by talking to their service providers, who could include doctors, pharmacists, care centres, and employers.
A supporter has the legal authority to access the adult’s personal information like medical records and to help the adult think through decisions.
Click on the image below for a printable version of a supported decision-making form. As you will see, it allows you to appoint up to three people to provide support for you when you need it.
Witnessing the form
This form is a do-it-yourself process but it requires witnessing. The witness does not need to know or approve of what is in the document. He or she is there to simply watch you sign. The instruction sheet the came with my form says the “witness cannot be one of your supporters.” It is also understood that a witness must be the age of majority.
That’s how it is in Alberta, Canada. Elsewhere, you might find something similar. It’s worth checking. This kind of assistance can make your elder-hood easier.
Last Wishes Letter. Why?
Your Will is all business. It ensures distribution of your material possessions and financial assets after you’ve died. But there is no “touchy-feely” quality to it. A Will does not provide any means of specifying how you want your body handled after you’ve left it, who you would like notified of your passing, and how you want to be memorialized.
The solution is for you to create a Last Wishes Letter. This is not a legal document, but rather a means of “speaking” to your family. In fact, you may want to literally speak to them by going over it with them while you’re still alive.
Getting down to it…
The contents of your Last Wishes Letter are entirely up to you. The following guidelines will help you get started.
~~ Your body…
Think about things like funeral, cremation, or body donation? Do you care where the ashes are spread? Open or closed casket? Do you have a preferred funeral home? Have you pre-paid for services? Is there a family burial plot? Do you want your funeral at home? What would that involve?
Do you envision a large funeral service in a religious building? A memorial service at the funeral home? What music do you want…or not want? Is your community of friends scattered across the country or the world, making either of those options impractical? What are the key facts you’d like included in your obituary? Have you written your own obituary to ensure accuracy of details? Do you want a tree planted in your name? A plaque on a wall at the cemetery where your urn is buried or your ashes scattered? Do you care?
~~ Special items and clarifications…
Taffy & Dolly
Dolly is one of the antiques I will be passing on to my two granddaughters. She was a gift from Santa Claus in the early 1950s. Recently, my sister sent Taffy, same vintage, to live at my house. Taffy is a gift, as long as she stays in my family. However, if my granddaughters don’t want her at inheritance time, Karen has asked that Taffy be returned…a fair and important request.
Why is this important? If Karen’s request is overlooked, that could cause hard feelings which might become irreparable. Most of us can think of examples from our own families where something like this has happened.
So here’s what I did… I printed the above photo on a letter-sized sheet of paper, leaving room around it for notations. I clearly indicated which doll was which, identifying the one that belongs to my sister. Then I wrote the details of our arrangement on the page. I have sent a copy to Karen, gave a copy to both my kids, and put the original page in my death documents file. I think I’ve covered all the bases and left no room for hard feelings!
Most of us have things that we’ve promised to people—a cherished item, a sum of money, forgiveness of a loan, or who knows what else. If you want to make sure things happen as you intended, then put the details in writing and share copies with everyone who should know about it.
~~ A personal message…
What you say, or don’t say, in your Last Wishes Letter is entirely up to you. “Goodbye. I love you. I am so proud of who you’ve become” is enough.
But if you want to say more and don’t know where to start, do a web search for “legacy letters” or “ethical wills.” You’ll find many websites to help you. I particularly like this description by Bill Zimmerman…
Every parent or adult should consider passing down to a beloved child a written legacy, or letters, focusing on all the important things which they have learned in their lives. Such legacy letters strengthen that child’s ability to survive in life and deal with all the good and bad things to be experienced in years to come. These legacy letters might include family values, lessons learned, memories, and hopes or dreams for that child. Such legacy notes also convey the wisdom that a parent or relative has acquired and which would be helpful for a child to know.
…you can start your own legacy letter by answering three short questions:
How do you want to be remembered?
What’s something you’ve learned from your parents?
What challenges have you overcome?
Click on the image above for a printable template for your Last Wishes Letter with spaces for jotting down some rough notes. When the rough outline is done, you can type it out, handwrite the whole thing, dictate your thoughts onto a video, or format it however you like. And, if you happen to die at the rough-note stage, your family will still have some idea of what you wanted them to know.
Like your Will, the Paper Trail is all business. It contains particulars about your legal and financial affairs, including location of documents such as land titles, birth certificate, divorce papers, and anything else that will help your executor more easily wind up your affairs. Your Paper Trail is also a good place to record pertinent health information such as healthcare numbers, where you get prescriptions filled, name of your health practitioners with contact information. This will be helpful for your agent if your Personal Directive must be brought into effect because of a deteriorated mental state.
Click on the image below for a printable fill-in-the-blanks version. To download the Word file of this Paper Trail document, click here.
It has been a lot to take in these past few weeks. You can’t do it all at once. Take a breath and start somewhere, with one small thing…
Please note: Laws vary between provinces, states, and countries. I’m using information from where I live to illustrate principles, but you will need to check the details in your jurisdiction. The Internet is a good place to start.
*** Time for this post? Reading… 12 minutes. Viewing…13 minutes well spent. Doing the work…take the time while you have it.
A Personal Directive (Advance Directive, Health Care Directive, Living Will) is an important piece of your paperwork. It’s the legal document in which you state your wishes for your personal care and medical treatment…or non-treatment. It only comes into effect if you are found to lack capacity to make personal decisions for yourself.
You need a Personal Directive as well as your Power of Attorney. Although both of them come into effect when you’ve lost your mental capacity to decide for yourself, the Power of Attorney can only address your financial matters. So a Personal Directive is necessary to give authority to someone you trust to make your personal decisions.
It’s about directing how you want your life to conclude…
Jim McDermott is a medical doctor who has seen plenty of life and death. In a compelling TEDx talk, he reminds us of the importance of initiating conversations about how we wish to pass when the time comes. He encourages us to think and act on our own convictions while we can, putting our wishes in writing so they are known by all who will be caring for us.
As Dr. McDermott says, you go to the trouble of documenting your wishes for…
Yourself… so you go in the best possible way.
Your loved ones… to clarify your wishes and prevent emotionally upsetting disputes about what is best.
Your doctors…to free them from their ethic of prolonging life at all cost.
Your wallet…to prevent unproductive expenditures on treatments that make very little difference in the long run.
Making an Advance Care Plan…
Putting your wishes in writing isn’t easy—he’s right about that!
For me, my Personal Directive was challenging because it took a while to find helpful information about how to do it. Not because there wasn’t information, but because it was written by medical people and government officials. The resulting booklets were confusingly clinical. They did nothing to help me think about what life might bring when I’m old and frail…or what I think should happen in such circumstances. Nor did they help me gain a sense of when I would be ready to say “enough is enough.”
Dying with Dignity…
Then I discovered Dying with Dignity Canada, an organization committed to improving our quality of dying, protecting end-of-life rights, and helping Canadians avoid unwanted suffering.
Dying with Dignity has a booklet that is incredibly useful. It walks you through the thinking process by asking a series of questions about what you would want in various scenarios. Here’s an example:
You have congestive heart failure. You are always short of breath. Your swollen ankles make walking difficult. But your mind is still sharp and you enjoy time with family and friends. One day you have a severe heart attack and your heart stops beating. Do you want 911 called and CPR started?
[ ] Yes
[ ] No
[ ] I am uncertain
Their questions helped clarify my thinking. But they take it one step further, and recommend also using the questions to initiate conversation with those who will be in charge of decisions about you. To do this, they suggest giving a blank copy of the questionnaire to your agents and family members to answer the way they think you did. Comparing their answers to yours shows the discrepancies, giving you a chance to discuss and clarify your wishes. In so many cases, this sort of conversation is the missing piece in end-of-life preparations. The questionnaire process facilitates it beautifully.
You can find their planning document at the Dying with Dignity website. If you live in Canada, scroll to the bottom to find the version tailored to your province’s legal requirements. If you live elsewhere in the world, pick any province and use the booklet for the thinking process. Then do some research to learn about the legalities and appropriate forms where you live.
Some practical information…
A Living Will or Personal Directive does not apply to your financial decisions. It only applies to personal decisions—those about where you will live and what sort of medical care you will agree to have in various circumstances.
You make your Personal Directive while you are still mentally sound. In it, you specify what you want to happen to you in the time before death, and appoint someone, known as your agent, to speak on your behalf when you cannot.
It is a legal document that comes into effect when you have been deemed incapable of acting on your own behalf.
When making your Personal Directive, be sure to check the legal requirements where you live. In Alberta, a Personal Directive is optional and voluntary. However, when one is made, it must meet certain prescribed conditions to be legally valid.
To be legally binding, a Personal Directive must be signed, dated, and witnessed. A lawyer can do it for you, but that is not necessary as long as you research the legal requirements and follow them carefully.
Your Personal Directive is not written in stone. You can change your mind and write a new directive at any time. Since it does not require assistance of a lawyer, it won’t cost anything except your trouble in arranging for someone to witness your signature.
In Alberta, a witness MAY NOT be the person you named as your agent, the spouse or partner of the person you named as your agent, your own spouse/partner, or anyone under the age of 18 (the age of majority).
The witness is not required to read your document or approve its contents. The witness is there to actually see you sign the paper. That means you must complete the document except for your signature before meeting with the witness. You sign first, and then the witness signs. If ever asked, your witness would be able to swear that he or she saw you sign the document.
Before meeting with the witness, make several copies of the unsigned but complete directive form. Both you and the witness sign each of the copies. this means that you and your agents each have a document with original signatures, which will be helpful when they need to use it.
Once your Personal Directive is signed and witnessed, you may want to make copies and send them to your family. This is not legally required but will help ensure there are no misunderstandings about what you want. You may also wish to leave copies with your doctor, lawyer, and/or clergyman.
Another angle to consider…
Dementia presents a unique situation because it can take 5 to 20 years for the end of life to arrive. You might want to give thought to the kind of medical care you would want at various stages if you were to develop worsening dementia.
I recently discovered an excellent health directive for dementia with clear and direct explanations. It was developed by Dr. Barak Gaster, a medical doctor who teaches resident physicians in the clinic at the Memory and Brain Wellness Center, University of Washington. He knows a lot about the ramifications of dementia.
His Dementia Directive Form is available free. I have just made my choices, signed and dated it, and attached it to my main Personal Directive. If you don’t yet have your Personal Directive completed, at least do the dementia directive and file it with copies of your Will and Power of Attorney. (More about what to do with all your documents at another time.)
The standard advance directives tend to focus on things like a ‘permanent coma’ or a ‘persistent vegetative state,’” Dr. Gaster said. “Most of the time, they apply to a person with less than six months to live. Although it’s a terminal disease, dementia often intensifies slowly, over many years. The point at which dementia patients can no longer direct their own care isn’t predictable or obvious.
That just gives you the flavour of what a dementia directive is about. It’s worth considering.
PS I just printed the graphic with the stars and attached it to the front of my directive because I felt the document was still lacking in the spirit of what I want. I think this does it! If you’d like to print the page I used, click on the image below.
PPS Laws vary between provinces, states, and countries. I’m using information from where I live to illustrate principles, but you will need to check the details in your jurisdiction. The Internet is a good place to start.